A large heavy package arrives at my office. I am expecting these charts after my conversation with the attorney. He says, "Doctor deMaine I'm representing a prestigious teaching hospital related to the death of a firefighter." He briefly explains the issues involved and I agree to review the case.
The large cardboard box contains hundreds of xeroxed pages from treating doctors outside the hospital as well as the complete hospital records and the autopsy report. I lug all this home and spend hours that evening sifting and sorting the time-line of events. This 34 year old female fire fighter begins to notice being easily winded with exercise over the past few months. She sees her internist who checks her heart and lungs including a chest x-ray and EKG. Her heart rate is 90 which is within a normal range but higher than her usual rate of 70. This isn't enough to raise red flags at this point, but there's no diagnosis for her symptoms.
Subsequently, at a house fire, she needs to scale a ladder carrying a hose. Becoming very winded, she collapses and has a brief "seizure-like" episode. Medic 1 responds and she is taken to the hospital where she is evaluated in the Emergency Room. Her blood pressure is fine, the heart rate is 110, and the neurological exam is normal. The neurology service admits her for observation and a "seizure workup".
After two days in the hospital, no diagnosis is established. The shortness of breath history is noted. The pulse rate never drops below 110. She is discharged from the hospital with an appointment made for the Pulmonary Clinic in two weeks. Three days later, she collapses in the shower. Her roommate calls 911 and she's brought to the hospital where the diagnosis of a pulmonary embolus is established. She has sudden cardiac arrest in the x-ray department and dies undergoing CPR.
I notice from her outpatient record buried in her history that she has been taking birth control pills for the past six months. Also there is no history of asthma, allergies, or any lung disease.
The attorney is not happy when I tell him that I can't testify for the defense. "Settle this one and try to stay away from a jury", is the best advice I can give him. "Look," I said, "if you framed the case with the appropriate information, any emergency physician would come to the diagnosis. You have a young woman on birth control pills who is becoming short of breath. This is a red flag for blood clots beginning to clog up the lungs. They start in the upper legs and pelvis and have no local symptoms - but can be deadly as they break loose and are pumped through the right side of the heart into the arteries of the lung. The heart rate goes up and I'll bet you anything that her neck veins were distended (from the obstructed blood flow). The 'seizure' was a red herring. The patient shouldn't have been discharged without a diagnosis. Basically no one put two and two together. The right questions weren't asked, so the right diagnosis was never considered. A simple lung scan would have made the diagnosis and anti-coagulation would have saved her life."
The attorney angrily told me that I wasn't being helpful to the medical profession and that I was prohibited in testifying for the plaintiff (which I very much dislike to do anyway).
Comment: This was a very sad death and very preventable if only the diagnosis of pulmonary embolism had been considered. There aren't many things that cause a young woman on birth control pills to have severe shortness of breath, but this patient was felt to have a brief "seizure" and admitted to the neurology service. Each specialty tends to focus in its area and we naturally try to fit the patient into a learned pattern. The smartest doctors I know (please count me out) have a sixth sense in a case like this; an ability to step back and ask the right questions.
All this said, I don't think the doctors sued were bad. Dragging them through the courts when they all felt guilty and terrible doesn't help anyone. I hope that in tort reform that we can develop expert review panels who can review a case like this, bring about a fair settlement, and not clog up the legal system for years with expensive "expert witnesses", discovery, rulings, appeals, etc.
Sunday, March 7, 2010
Monday, February 22, 2010
Talking to God?
"We have a patient on a ventilator here who is stable enough to transfer to your ICU, if that's OK with you."
This call, coming from the transfer coordinator, is emblematic of an insurance generated "medical care" coverage issue. I am salaried under the patient's insurance carrier so the insurer wants this patient back under its wing as soon as possible.
The community hospital has been keeping Stella Norris (not her real name), an 89 year old woman, as long as possible. She is incapacitated from a massive stroke suffered five years ago. There is a feeding tube inserted through the stomach wall and she has needed total body care. 911 was called when she stopped breathing and she was taken to the closest hospital
The daughter, Janice, seldom visits because there is no ability to communicate. The home care has been given over to George, a step grandson. George has devoted his life to care for Stella, day and night in his small apartment. He believes in miracles, he says, and spends his days reading about alternative medicine and watching televangelists on TV. He says God speaks to him.
The precipitating event at the community hospital, I learned later was this. George is found in the ICU briefly disconnecting the endotracheal tube from Stella's ventilator and inserting herbal medications down the tube. The alarms go off, and the nurses are so horrified they now designate the patient stable enough to transfer. Yes, loss of income for the hospital, but a real problem patient out of their hair. The are delighted to "turf" (medical slang for passing your problem patient to someone else) to another institution!
I admit the patient, get the scoop from the referral medical team, and examine this very debilitated ill woman. She does not respond to any verbal or physical stimuli, has shrunken limbs on the right side of her body, has bed sores, infected urine and a pneumonia on chest X-Ray. I confirm with the family that she has not been responsive or out of bed for five years. They are, however, delighted with the care that George has provided.
At our first family conference the daughter, Janice, seems reasonable and understanding when I probed the issue of Stella's wishes for invasive care. Stella had no known Advance Directives. Janice says, "I'm really not sure Mom would have wanted any of this. I'm certain I wouldn't want any extended care like this for myself, but..."
I explain in detail the poor outlook and the process of prolonging death that we are providing with a ventilator, tube feeding, antibiotics, etc. There is a dynamic that I can't figure out. George has sat there quietly with a scowl on his face, never nodding in agreement.
"George, what are your thoughts?", I ask.
"I know she's not ready to die. God and spoken to me and I know."
Janice and other family members subsequently back off, don't want to attend family conferences and defer to George. They seem intimidated to challenge him, even though I say he may not be acting in Stella's best interest.
The next week George posts a notice in the ICU for Stella's memorial service - more than three months hence! I try to confront George and the family to no avail. We discus the case at our Ethics Committee of which I'm a member and they designate the Hospital Chaplain to try to intervene. He's unable to connect in a rational way with George. The Ethics Committee reminds the daughter Janice that under Washington State law, that she has legal decision making authority. Janice again defers to George. Our legal department is contacted and says we could try for a court appointed guardian, but that the guardian would be very unlikely to go against the wishes of the daughter.
After eight weeks in the ICU, Stella begins to worsen. The circulation begins to fail and her entire left arm becomes cold and gangrenous. The orthopedic surgeon does not offer amputation because she wouldn't survive surgery.
About this time, I finally tell George that I'm unwilling to do CPR or electric shocks to restart to heart when it stops. He gives me a vacant look devoid of visible emotion. It gives me the creeps, and the nurses begin to freak out wondering what George will do at Stella's death.
The end is weirdly peaceful. She dies with George there. The heart has flat-lined but the ventilator continued to puff fruitlessly. I receive this call in the evening at home. I'm beat and really don't want to drive back in but I need an experienced forceful doctor at the bedside.
Then I remembered my buddy Don, the burly no-nonsense ER doctor was in house. "Don can you do me a huge a favor?"
So after asking the nurses to call Security to have them present in the ICU, Don agrees to pronounce Stella dead, and to tell George (I think I still owe Don for that one).
George receives the news, leaves the hospital, and we never hear from him or the family again.
Comment: Futility, is medically hard to define, except in extreme cases. This one qualified in my book, but we felt impotent because of hidden family dynamics and mental illness. Was George really crazy? Was a social security check or other financial benefit a motivator? Did George control the inheritance?
A few years back, Dr. John Luce wrote an article in the medical journal "Chest" where he compared the care of this kind of patient in France and in the USA. The French doctor said, "No problem. In France, we have limited visiting hours and the families look to the doctor to make decisions. When the family is gone and we've had discussions, we simply remove the ventilator and let the patient die peacefully." In contrast, the American doctor said she "tried for consensus and shared decision making giving autonomy the highest value. In some situations consensus was difficult or impossible to achieve".
The problem in this case was that the patient's wishes were never known, the care was futile, and everyone lost out.
This call, coming from the transfer coordinator, is emblematic of an insurance generated "medical care" coverage issue. I am salaried under the patient's insurance carrier so the insurer wants this patient back under its wing as soon as possible.
The community hospital has been keeping Stella Norris (not her real name), an 89 year old woman, as long as possible. She is incapacitated from a massive stroke suffered five years ago. There is a feeding tube inserted through the stomach wall and she has needed total body care. 911 was called when she stopped breathing and she was taken to the closest hospital
The daughter, Janice, seldom visits because there is no ability to communicate. The home care has been given over to George, a step grandson. George has devoted his life to care for Stella, day and night in his small apartment. He believes in miracles, he says, and spends his days reading about alternative medicine and watching televangelists on TV. He says God speaks to him.
The precipitating event at the community hospital, I learned later was this. George is found in the ICU briefly disconnecting the endotracheal tube from Stella's ventilator and inserting herbal medications down the tube. The alarms go off, and the nurses are so horrified they now designate the patient stable enough to transfer. Yes, loss of income for the hospital, but a real problem patient out of their hair. The are delighted to "turf" (medical slang for passing your problem patient to someone else) to another institution!
I admit the patient, get the scoop from the referral medical team, and examine this very debilitated ill woman. She does not respond to any verbal or physical stimuli, has shrunken limbs on the right side of her body, has bed sores, infected urine and a pneumonia on chest X-Ray. I confirm with the family that she has not been responsive or out of bed for five years. They are, however, delighted with the care that George has provided.
At our first family conference the daughter, Janice, seems reasonable and understanding when I probed the issue of Stella's wishes for invasive care. Stella had no known Advance Directives. Janice says, "I'm really not sure Mom would have wanted any of this. I'm certain I wouldn't want any extended care like this for myself, but..."
I explain in detail the poor outlook and the process of prolonging death that we are providing with a ventilator, tube feeding, antibiotics, etc. There is a dynamic that I can't figure out. George has sat there quietly with a scowl on his face, never nodding in agreement.
"George, what are your thoughts?", I ask.
"I know she's not ready to die. God and spoken to me and I know."
Janice and other family members subsequently back off, don't want to attend family conferences and defer to George. They seem intimidated to challenge him, even though I say he may not be acting in Stella's best interest.
The next week George posts a notice in the ICU for Stella's memorial service - more than three months hence! I try to confront George and the family to no avail. We discus the case at our Ethics Committee of which I'm a member and they designate the Hospital Chaplain to try to intervene. He's unable to connect in a rational way with George. The Ethics Committee reminds the daughter Janice that under Washington State law, that she has legal decision making authority. Janice again defers to George. Our legal department is contacted and says we could try for a court appointed guardian, but that the guardian would be very unlikely to go against the wishes of the daughter.
After eight weeks in the ICU, Stella begins to worsen. The circulation begins to fail and her entire left arm becomes cold and gangrenous. The orthopedic surgeon does not offer amputation because she wouldn't survive surgery.
About this time, I finally tell George that I'm unwilling to do CPR or electric shocks to restart to heart when it stops. He gives me a vacant look devoid of visible emotion. It gives me the creeps, and the nurses begin to freak out wondering what George will do at Stella's death.
The end is weirdly peaceful. She dies with George there. The heart has flat-lined but the ventilator continued to puff fruitlessly. I receive this call in the evening at home. I'm beat and really don't want to drive back in but I need an experienced forceful doctor at the bedside.
Then I remembered my buddy Don, the burly no-nonsense ER doctor was in house. "Don can you do me a huge a favor?"
So after asking the nurses to call Security to have them present in the ICU, Don agrees to pronounce Stella dead, and to tell George (I think I still owe Don for that one).
George receives the news, leaves the hospital, and we never hear from him or the family again.
Comment: Futility, is medically hard to define, except in extreme cases. This one qualified in my book, but we felt impotent because of hidden family dynamics and mental illness. Was George really crazy? Was a social security check or other financial benefit a motivator? Did George control the inheritance?
A few years back, Dr. John Luce wrote an article in the medical journal "Chest" where he compared the care of this kind of patient in France and in the USA. The French doctor said, "No problem. In France, we have limited visiting hours and the families look to the doctor to make decisions. When the family is gone and we've had discussions, we simply remove the ventilator and let the patient die peacefully." In contrast, the American doctor said she "tried for consensus and shared decision making giving autonomy the highest value. In some situations consensus was difficult or impossible to achieve".
The problem in this case was that the patient's wishes were never known, the care was futile, and everyone lost out.
Friday, January 29, 2010
My Afghan Introduction to Medicine
Najiba is ill with weeping infected blistering lesions around her mouth which should be easily managed with an antibiotic. I can only hope that the Afghan medic knows what to do. Her child looks even more ill. They have been waiting with
forlorn patience for hours sitting on the ground outside the clinic in Laskar Gah in the desert heat of the Helmand Valley . As a medical student in 1962 working for the summer in Afghanistan, this is my introduction to medical deprivation.
The Afghan medic briefly looks at her and the child, writes a prescription on a piece of paper in Farsi and says, "next." As an observer collecting research data on infant mortality (continues at 30% within the first year of life), I feel so helpless.
Another mother on the way out begs me to look at her child's ear. An otoscope is produced, and I see a protruding black object from the child's left ear canal. Somehow with a hemostat I manage to remove a wriggling cockroach. One small thing accomplished but such a feeling of overwhelming impotence.
The child drinks water is from an open ditch. She has round worm (Ascaris) infestation in her bowels, a nearly universal finding in Afghan children who have no access to clean water. Immunizations are rare with smallpox common. In the late 1960's Peace Corps female health worke
rs travel from village to village with an eradication campaign. Small pox disappears from Afghanistan but water born diseases remain.
Infant diarrhea and dehydration leading to death is all too common. Two ex-US Army nurses enlist as Peace Corps pediatric nurses in a Kabul Hospital. I watch them with disbelief. The child arrives sick, dehydrated and with a weak cry. He needs intravenous hydration but no IV fluids are available. Also not available are sterile needles, saline, or gloves. The nurses boil up a saline IV formula along with some reusable needles and 50 cc syringes. Bare handed they place their finger over the end of the syringe, pour in saline, attach a needle, and inject the saline into the infants left flank. They then repeat the procedure with the same needle, into the right flank. The infant is gently handed back to the mother who left with a glint of hope in her eyes, saying "Tashakor." (thank you).
A woman from a village 50 miles away is pregnant for the 8th time, having lost four of children to illness. But this time she is very ill, at term pregnancy, in labor yet having severe abdominal pain. The Afghan doctor says, "It's likely a ruptured uterus." The visiting American OB-GYN says, "No one could walk in with a ruptured uterus, it must be an ectopic pregnancy." At surgery, the uterus has indeed ruptured and the child amazingly survived. They explain to me that Afghan women lack Vitamin D, have no sun exposure, and lose calcium from breast feeding and multiple pregnancies. The bones
soften and the birth canal narrows, leading to the obstetrical emergency and uterine rupture.
The young man lies on a charpoi bed in a remote village near Maimana in the north. His father pleads with me to come to his house and examine him. The young man is thin, a teenager, embarrassed and uncomfortable - possibly in pain. The father gently lowers the bed cover and I'm shocked. The left testicle is hugely swollen about five times the normal size. It is rock hard with similar hard enlarged lymph nodes in the groin. The cancer is obvious, even treatable. Again I'm helpless as a medical student. I write out the name of an excellent surgeon at Kabul's Avicenna Hospital and advise the father that some help may be available there. I told him I hope that his son does well. The father nods, and adds accepting his fate, "Enshallah." (Allah willing).
Comment: I returned to Afghanistan in 1965, a relatively peaceful time under King Zahir Shah. In the US Public Health Service assigned to the Peace Corps, I provided health care for the volunteers and did programming work for the volunteer health care workers. The Afghans were eager to learn English and improve their skills in many fields. Yet they were proud and naturally mistrustful of foreigners given their history. We were "non-believers". The stories of the British invasion and occupation in the mid 1800's were passed from generation to generation. They are a proud people, tribal, and independent. Yet we found them respectful and friendly with a quick smile.
I have great respect for the young Americans serving in the Peace Corps. These were the early days of the Peace Corps when Sargent Shriver was still the director. I still remember my interview with him and the huge picture of the Kennedy family hanging on his office wall - quite daunting.
Dysentery was a way of life for the Peace Corps there and bowels became the frequent subject of complaint and humor. There were amoeba, giardia, salmonella and, of course, worms.
An urgent call comes from a volunteer, "I've got worms, I've got worms."
"OK, it's OK. We've got really good medication to get rid of them. Come on in."
She replies, "But you don't understand!"
"What don't I understand?"
"It's only half way out!"
These round worms are often not a major issue and pretty easily treated. But they can enter the appendix or bile duct and cause acute obstruction - or even at times bowel obstruction.
We hear a lot about war injuries, but lack of basic medical care continues to be a huge problem. An Afghan doctor is trying to open a large outpatient urgent care center in Kabul, built with funds from the US military. But the local university medical graduates have very marginal training. 80% of them failed a very basic skills test and none of them had ever sewn up a laceration. There's a long road ahead, even after the violence ends.
forlorn patience for hours sitting on the ground outside the clinic in Laskar Gah in the desert heat of the Helmand Valley . As a medical student in 1962 working for the summer in Afghanistan, this is my introduction to medical deprivation.
The Afghan medic briefly looks at her and the child, writes a prescription on a piece of paper in Farsi and says, "next." As an observer collecting research data on infant mortality (continues at 30% within the first year of life), I feel so helpless.
Another mother on the way out begs me to look at her child's ear. An otoscope is produced, and I see a protruding black object from the child's left ear canal. Somehow with a hemostat I manage to remove a wriggling cockroach. One small thing accomplished but such a feeling of overwhelming impotence.
The child drinks water is from an open ditch. She has round worm (Ascaris) infestation in her bowels, a nearly universal finding in Afghan children who have no access to clean water. Immunizations are rare with smallpox common. In the late 1960's Peace Corps female health worke
rs travel from village to village with an eradication campaign. Small pox disappears from Afghanistan but water born diseases remain.
Infant diarrhea and dehydration leading to death is all too common. Two ex-US Army nurses enlist as Peace Corps pediatric nurses in a Kabul Hospital. I watch them with disbelief. The child arrives sick, dehydrated and with a weak cry. He needs intravenous hydration but no IV fluids are available. Also not available are sterile needles, saline, or gloves. The nurses boil up a saline IV formula along with some reusable needles and 50 cc syringes. Bare handed they place their finger over the end of the syringe, pour in saline, attach a needle, and inject the saline into the infants left flank. They then repeat the procedure with the same needle, into the right flank. The infant is gently handed back to the mother who left with a glint of hope in her eyes, saying "Tashakor." (thank you).
A woman from a village 50 miles away is pregnant for the 8th time, having lost four of children to illness. But this time she is very ill, at term pregnancy, in labor yet having severe abdominal pain. The Afghan doctor says, "It's likely a ruptured uterus." The visiting American OB-GYN says, "No one could walk in with a ruptured uterus, it must be an ectopic pregnancy." At surgery, the uterus has indeed ruptured and the child amazingly survived. They explain to me that Afghan women lack Vitamin D, have no sun exposure, and lose calcium from breast feeding and multiple pregnancies. The bones
soften and the birth canal narrows, leading to the obstetrical emergency and uterine rupture.
The young man lies on a charpoi bed in a remote village near Maimana in the north. His father pleads with me to come to his house and examine him. The young man is thin, a teenager, embarrassed and uncomfortable - possibly in pain. The father gently lowers the bed cover and I'm shocked. The left testicle is hugely swollen about five times the normal size. It is rock hard with similar hard enlarged lymph nodes in the groin. The cancer is obvious, even treatable. Again I'm helpless as a medical student. I write out the name of an excellent surgeon at Kabul's Avicenna Hospital and advise the father that some help may be available there. I told him I hope that his son does well. The father nods, and adds accepting his fate, "Enshallah." (Allah willing).
Comment: I returned to Afghanistan in 1965, a relatively peaceful time under King Zahir Shah. In the US Public Health Service assigned to the Peace Corps, I provided health care for the volunteers and did programming work for the volunteer health care workers. The Afghans were eager to learn English and improve their skills in many fields. Yet they were proud and naturally mistrustful of foreigners given their history. We were "non-believers". The stories of the British invasion and occupation in the mid 1800's were passed from generation to generation. They are a proud people, tribal, and independent. Yet we found them respectful and friendly with a quick smile.
I have great respect for the young Americans serving in the Peace Corps. These were the early days of the Peace Corps when Sargent Shriver was still the director. I still remember my interview with him and the huge picture of the Kennedy family hanging on his office wall - quite daunting.
Dysentery was a way of life for the Peace Corps there and bowels became the frequent subject of complaint and humor. There were amoeba, giardia, salmonella and, of course, worms.
An urgent call comes from a volunteer, "I've got worms, I've got worms."
"OK, it's OK. We've got really good medication to get rid of them. Come on in."
She replies, "But you don't understand!"
"What don't I understand?"
"It's only half way out!"
These round worms are often not a major issue and pretty easily treated. But they can enter the appendix or bile duct and cause acute obstruction - or even at times bowel obstruction.
We hear a lot about war injuries, but lack of basic medical care continues to be a huge problem. An Afghan doctor is trying to open a large outpatient urgent care center in Kabul, built with funds from the US military. But the local university medical graduates have very marginal training. 80% of them failed a very basic skills test and none of them had ever sewn up a laceration. There's a long road ahead, even after the violence ends.
Friday, January 22, 2010
Doctor for the Family?
In retirement I get a lot of inquiries from family and friends about aspects of their disease or care. I try not to be intrusive and to mostly provide reassurance, but sometimes I just can't stand by.
My sister in rural Pennsylvania had severe shortness of breath and also a known leaky heart valve (stable since childhood). A local cardiologist told her she needed three heart valves replaced! This was so over the top that I "interfered" by advising her to head to the relatively nearby Cleveland Clinic (her records didn't arrive so it took two trips there). The description of the consultant she saw there was a disinterested "cold fish." He told her no surgery was indicated and that all she needed to do was lose weight. He saw no need for further tests or referrals.
So I entered the picture again and contacted a Pulmonologist at the University of Pittsburgh Medical Center who was very gracious. Doctor's don't necessarily look forward to being the third consultant - basically a referee. He did pulmonary functions, CT scans and cardiac ultrasounds to evaluate her pulmonary hypertension. My sister subsequently went all the way through a thoracoscopic lung biopsy which unfortunately showed a serious irreversible lung disease.
I check in by phone with my sister every few days. She is now on Hospice care, but the Hospice base is 40 miles away and several different RN's have been to see her. In treating her shortness of breath she got pretty goofy and unstable on the sedative/narcotic regimen so they put her in the inpatient Hospice Unit for a week. She's pretty much bed ridden, on oxygen and at peace with her fate.
After coming home from the Hospice Unit, she casually mentioned that she really felt hyper, shaky and jittery. After reviewing her meds, we discovered that she was on both long acting plus short acting asthma inhaler meds. So I said, "check with your medical team, but for now stop the short acting albuterol and use it only as needed." The jitters resolved. I told her to send my apologies to her team and that I'm sure they would have given the same advice.
In general, doctor's are advised not to provide direct care for their families. That certainly didn't apply to our family when we were kids. My father was an "old time" family doctor. We got our ears checked, penicillin shots, etc. by going into dad's office after school.
I sewed up my son's laceration at a Boy Scout Camp when I was the doctor there. It would have been silly to send him back to Seattle. Of course my son, now a lawyer, still points to the scar on his knee and says, "boy, you can sure tell that wasn't sewn up by a plastic surgeon."
The label of nurse or doctor carries over to the stage of retirement. I hope I have been of some help to my sister, but it's a balancing act. In general, being supportive with bits of education and reassurance is probably the best medicine we have to offer for our families.
My sister in rural Pennsylvania had severe shortness of breath and also a known leaky heart valve (stable since childhood). A local cardiologist told her she needed three heart valves replaced! This was so over the top that I "interfered" by advising her to head to the relatively nearby Cleveland Clinic (her records didn't arrive so it took two trips there). The description of the consultant she saw there was a disinterested "cold fish." He told her no surgery was indicated and that all she needed to do was lose weight. He saw no need for further tests or referrals.
So I entered the picture again and contacted a Pulmonologist at the University of Pittsburgh Medical Center who was very gracious. Doctor's don't necessarily look forward to being the third consultant - basically a referee. He did pulmonary functions, CT scans and cardiac ultrasounds to evaluate her pulmonary hypertension. My sister subsequently went all the way through a thoracoscopic lung biopsy which unfortunately showed a serious irreversible lung disease.
I check in by phone with my sister every few days. She is now on Hospice care, but the Hospice base is 40 miles away and several different RN's have been to see her. In treating her shortness of breath she got pretty goofy and unstable on the sedative/narcotic regimen so they put her in the inpatient Hospice Unit for a week. She's pretty much bed ridden, on oxygen and at peace with her fate.
After coming home from the Hospice Unit, she casually mentioned that she really felt hyper, shaky and jittery. After reviewing her meds, we discovered that she was on both long acting plus short acting asthma inhaler meds. So I said, "check with your medical team, but for now stop the short acting albuterol and use it only as needed." The jitters resolved. I told her to send my apologies to her team and that I'm sure they would have given the same advice.
In general, doctor's are advised not to provide direct care for their families. That certainly didn't apply to our family when we were kids. My father was an "old time" family doctor. We got our ears checked, penicillin shots, etc. by going into dad's office after school.
I sewed up my son's laceration at a Boy Scout Camp when I was the doctor there. It would have been silly to send him back to Seattle. Of course my son, now a lawyer, still points to the scar on his knee and says, "boy, you can sure tell that wasn't sewn up by a plastic surgeon."
The label of nurse or doctor carries over to the stage of retirement. I hope I have been of some help to my sister, but it's a balancing act. In general, being supportive with bits of education and reassurance is probably the best medicine we have to offer for our families.
Tuesday, January 19, 2010
You Killed My Mother
Martha's death was difficult but not unexpected. She had been in and out of the hospital three times in the past six weeks. Her husband was there at the end.
About an hour later I got a call from the son, John, who hadn't been around much. He was upset, angry and aggressive: "Doctor, you killed my mother. I want to meet with you and my lawyer there today!"
I think I must have surprised him by saying, "OK, how about 2PM today." I had just had a patient cancel and had a free spot. I arranged for a conference room since I didn't know how many people would be there. Medically, I didn't think I had done anything wrong and was reluctant to generate unnecessary tension. I was pretty certain that if I called the hospital's legal department that they would want to meet with me first and then perhaps be at the meeting. I had been in enough contentious situations over the years and I didn't want this one to escalate. Also, I had enough gray hairs, that I'd been in similar situations before.
So I ordered up all Martha's records and took them to the third floor conference room next to the library. Four family members arrived: John the son, Ed the husband, Mike the brother-in-law and Sue the patient's sister.
I asked whether their attorney was coming, and Mike said he was a tax attorney in Seattle. So John's initial challenge that he would bring "his attorney", turned out to be a family member who wasn't a litigator.
After introductions, I asked John what the concerns about his Mom's care were. He said, "I think she got too much morphine and it killed her."
I said, "Let's review the care and medications she received. Here's the chart so we can all review it and look at the medication record and the nurses notes. First, I think we all know that Martha had very severe emphysema. At age 81 she was weakening and her lung function worsening despite aggressive use of prednisone and inhalers. Infectious were vigorously treated with antibiotics. But she was slowly suffocating even with oxygen."
Mike said, "Well, where does the morphine come in."
"Good question. Martha had decided that she didn't want to be put on a ventilator because her quality of life was so poor, yet she felt panicked often being unable to catch her breath. She said she felt like a fish out of water. Indeed her carbon dioxide was climbing and her oxygen levels falling in her blood gas samples. The end wasn't far away."
"OK, but what about the morphine, John interjected."
"Well, your Mom was becoming agitated, not making sense and beginning to cry out. At that point I talked to your dad, John, and told him morphine or a sedative would help your mom be more comfortable. So we began small doses to try to titrate care for comfort."
Mike said, "Is that right dad?"
"Yes, Martha was so uncomfortable and so confused. I felt we needed to do something to make her more peaceful. I felt she was dying."
"Let's look at the medication sheet. The nurses gave her 1 or 2 mg of morphine at each of these times over a three hour period. The total dose was 10 mg. Although it could be argued that the morphine speeded up her death by a matter of minutes, the morphine did several positive things for her. It releaved her anxiety, decreased her sense of shortness of breath, and basically relaxed her as she drifted into sleep and ultimately death. Without the morphine she would have had a miserable death."
By this time John had calmed down and began to realize that he needed to support dad. I relearned the lesson that all family members need to be involved at the end - with active outreach if they aren't there. There seems to be a direct correlation between anger and distance from care.
Comment: Over the years, I would come to insist that all family members be involved in the family conferences. We would arrange conference calls so "Aunt Minnie for Minneapolis" could be there and feel included. Allowing all concerns to be addressed, transparency of medical records, admitting our own shortcomings, and wishing that things were different were all "OK." In this case, I should have brought John, the son, in much earlier so he could understand the issue of palliative use of morphine in end stage lung disease.
About an hour later I got a call from the son, John, who hadn't been around much. He was upset, angry and aggressive: "Doctor, you killed my mother. I want to meet with you and my lawyer there today!"
I think I must have surprised him by saying, "OK, how about 2PM today." I had just had a patient cancel and had a free spot. I arranged for a conference room since I didn't know how many people would be there. Medically, I didn't think I had done anything wrong and was reluctant to generate unnecessary tension. I was pretty certain that if I called the hospital's legal department that they would want to meet with me first and then perhaps be at the meeting. I had been in enough contentious situations over the years and I didn't want this one to escalate. Also, I had enough gray hairs, that I'd been in similar situations before.
So I ordered up all Martha's records and took them to the third floor conference room next to the library. Four family members arrived: John the son, Ed the husband, Mike the brother-in-law and Sue the patient's sister.
I asked whether their attorney was coming, and Mike said he was a tax attorney in Seattle. So John's initial challenge that he would bring "his attorney", turned out to be a family member who wasn't a litigator.
After introductions, I asked John what the concerns about his Mom's care were. He said, "I think she got too much morphine and it killed her."
I said, "Let's review the care and medications she received. Here's the chart so we can all review it and look at the medication record and the nurses notes. First, I think we all know that Martha had very severe emphysema. At age 81 she was weakening and her lung function worsening despite aggressive use of prednisone and inhalers. Infectious were vigorously treated with antibiotics. But she was slowly suffocating even with oxygen."
Mike said, "Well, where does the morphine come in."
"Good question. Martha had decided that she didn't want to be put on a ventilator because her quality of life was so poor, yet she felt panicked often being unable to catch her breath. She said she felt like a fish out of water. Indeed her carbon dioxide was climbing and her oxygen levels falling in her blood gas samples. The end wasn't far away."
"OK, but what about the morphine, John interjected."
"Well, your Mom was becoming agitated, not making sense and beginning to cry out. At that point I talked to your dad, John, and told him morphine or a sedative would help your mom be more comfortable. So we began small doses to try to titrate care for comfort."
Mike said, "Is that right dad?"
"Yes, Martha was so uncomfortable and so confused. I felt we needed to do something to make her more peaceful. I felt she was dying."
"Let's look at the medication sheet. The nurses gave her 1 or 2 mg of morphine at each of these times over a three hour period. The total dose was 10 mg. Although it could be argued that the morphine speeded up her death by a matter of minutes, the morphine did several positive things for her. It releaved her anxiety, decreased her sense of shortness of breath, and basically relaxed her as she drifted into sleep and ultimately death. Without the morphine she would have had a miserable death."
By this time John had calmed down and began to realize that he needed to support dad. I relearned the lesson that all family members need to be involved at the end - with active outreach if they aren't there. There seems to be a direct correlation between anger and distance from care.
Comment: Over the years, I would come to insist that all family members be involved in the family conferences. We would arrange conference calls so "Aunt Minnie for Minneapolis" could be there and feel included. Allowing all concerns to be addressed, transparency of medical records, admitting our own shortcomings, and wishing that things were different were all "OK." In this case, I should have brought John, the son, in much earlier so he could understand the issue of palliative use of morphine in end stage lung disease.
Friday, January 15, 2010
Viva Puerto Villarta
Mike sat by his mother's bed saying to her, "Mom, hurry up and get well so we can go to Puerto Vallarta. The problem was there was no way to tell if anything was registering with Midge Jackson, his mom. She was on life support, heavily sedated and things didn't look good. Mike was a firefighter and an upbeat take charge kind of guy. He was with Mom most of the time he could spare and, as her doctor in the ICU, Mike and I were in frequent communication.
I first met Midge and the family in medical crisis - unfortunately not an unusual mode of initial contact in the ICU. The call came from my surgical colleague, "We're sending a patient to the ICU post triple A and her pressure is falling, could you see her?" The "triple A" was an abdominal aortic aneurysm replacement in this 76 year old woman. The large trunk of an artery in the lower abdomen was threatening to burst and she had just survived the urgent surgery which replaced the aneurysm with a sizable graft.
Initially Midge seemed to improve and we thought she was stabilizing, but then an intestinal bleeding occured. After transfusions, the GI specialists found stress ulcers in the stomach and got the bleeding stopped. She remained on life support and the lungs began to fill up with fluid. It became hard for the ventilator to give enough support. We were concerned about both giving too much oxygen or too little, too much pressure or too little ventilation. It was difficult but I advised the family that she had a reasonable chance of pulling through this new complication, adult respiratory distress syndrome.
At week three in the ICU Midge's lungs weren't much better, but they weren't worse either. Mike the firefighter kept saying to Midge, "Come on Mom, get better. Remember we're going to Mexico." Midge was minimally responsive to her environment but could open her eyes and more all her limbs, so the family knew she was still there.
At week five after surviving a bout of urinary infection, Midge's temperature spiked to 104 and the blood pressure and urine output fell drastically. We did the usual cultures and big gun antibiotics but in a day found out that a yeast type fungus was growing out of her blood. We began antifungal medications, but things didn't look good.
Some of the staff began to wonder if we were really doing Midge a favor keeping her alive this way. Mike, however, correctly stated "I don't think you can say she has a terminal diagnosis. Do you think so?"
We had a family conference frequently and were almost at the eighth week now. Some family members began to say that they weren't sure that Mom would want to keep going like this. But they, and Mike, all described Midge as a vital person who really loved life and "wasn't going to go easily."
I felt that the family was indeed acting in Midge's best interest but told them that if there were further complications like a stroke or heart attact or kidney failure that the outlook would be grim.
One day in the 10th week, like magic bowel function returned, the blood count normalized and then the lungs began to clear. We lightened sedation and she began to respond and have weaning trials off the ventilator. Mike kept saying, "Mom remember, it's Puerto Villarta for a cerveza."
After nearly three months in the ICU, we celbrated the day that Midge was able to transfer to the medical unit under the care of the Hospitalists there. It felt like a graduation, but the attempts at rehabilitation had just begun. She needed lots of strengthening and physical therapy. At that point I lost track of Midge except that I heard subsequently that she had gone to a skilled nursing facility for intensive physical therapy.
Comment: Unlike many elderly ICU patients Midge's case was gratifying and one that the nurses and I would long remember. It was humbling to think that we were becoming discouraged and wondering if it was wise to push on with life support. The huge advantage that Midge had is that she didn't have a terminally disabling medical condition. Her care could never be called futile.
My readers may not believe the following, but it is absolutely true! In the spring of the year Midge was discharged from the hospital, our family was at the airport boarding a flight to Puerto Vallarta. Out of nowhere and from across the lobby, I heard a shriek, "There's my doctor, you saved my life." I only saw a nice white haired well groomed elderly lady and wondered whom she was calling out to. Then I saw Mike, and began to recognize Midge with a smile. We were on the same flight to Puerto Vallarta and even managed to have a cerveza together there.
I first met Midge and the family in medical crisis - unfortunately not an unusual mode of initial contact in the ICU. The call came from my surgical colleague, "We're sending a patient to the ICU post triple A and her pressure is falling, could you see her?" The "triple A" was an abdominal aortic aneurysm replacement in this 76 year old woman. The large trunk of an artery in the lower abdomen was threatening to burst and she had just survived the urgent surgery which replaced the aneurysm with a sizable graft.
Initially Midge seemed to improve and we thought she was stabilizing, but then an intestinal bleeding occured. After transfusions, the GI specialists found stress ulcers in the stomach and got the bleeding stopped. She remained on life support and the lungs began to fill up with fluid. It became hard for the ventilator to give enough support. We were concerned about both giving too much oxygen or too little, too much pressure or too little ventilation. It was difficult but I advised the family that she had a reasonable chance of pulling through this new complication, adult respiratory distress syndrome.
At week three in the ICU Midge's lungs weren't much better, but they weren't worse either. Mike the firefighter kept saying to Midge, "Come on Mom, get better. Remember we're going to Mexico." Midge was minimally responsive to her environment but could open her eyes and more all her limbs, so the family knew she was still there.
At week five after surviving a bout of urinary infection, Midge's temperature spiked to 104 and the blood pressure and urine output fell drastically. We did the usual cultures and big gun antibiotics but in a day found out that a yeast type fungus was growing out of her blood. We began antifungal medications, but things didn't look good.
Some of the staff began to wonder if we were really doing Midge a favor keeping her alive this way. Mike, however, correctly stated "I don't think you can say she has a terminal diagnosis. Do you think so?"
We had a family conference frequently and were almost at the eighth week now. Some family members began to say that they weren't sure that Mom would want to keep going like this. But they, and Mike, all described Midge as a vital person who really loved life and "wasn't going to go easily."
I felt that the family was indeed acting in Midge's best interest but told them that if there were further complications like a stroke or heart attact or kidney failure that the outlook would be grim.
One day in the 10th week, like magic bowel function returned, the blood count normalized and then the lungs began to clear. We lightened sedation and she began to respond and have weaning trials off the ventilator. Mike kept saying, "Mom remember, it's Puerto Villarta for a cerveza."
After nearly three months in the ICU, we celbrated the day that Midge was able to transfer to the medical unit under the care of the Hospitalists there. It felt like a graduation, but the attempts at rehabilitation had just begun. She needed lots of strengthening and physical therapy. At that point I lost track of Midge except that I heard subsequently that she had gone to a skilled nursing facility for intensive physical therapy.
Comment: Unlike many elderly ICU patients Midge's case was gratifying and one that the nurses and I would long remember. It was humbling to think that we were becoming discouraged and wondering if it was wise to push on with life support. The huge advantage that Midge had is that she didn't have a terminally disabling medical condition. Her care could never be called futile.
My readers may not believe the following, but it is absolutely true! In the spring of the year Midge was discharged from the hospital, our family was at the airport boarding a flight to Puerto Vallarta. Out of nowhere and from across the lobby, I heard a shriek, "There's my doctor, you saved my life." I only saw a nice white haired well groomed elderly lady and wondered whom she was calling out to. Then I saw Mike, and began to recognize Midge with a smile. We were on the same flight to Puerto Vallarta and even managed to have a cerveza together there.
Monday, December 21, 2009
Going to the Prom
Marcie transitioned to my care when she turned sixteen. She felt too grown up now to be in the same waiting room with "kids" at the children's clinic. But she wasn't doing well.
Her Pediatrician had suspected the problem shortly after birth. She wasn't growing normally, had nasal congestion, and more respiratory infections than usual. A sweat chloride test was ordered which was positive. The diagnosis was cystic fibrosis (CF). The diagnosis was devastating to Rich and Sally, her mom and dad. Both of them were free of the disease, yet they were "carriers" of an abnormal gene which meant that statistically 25% of their children would have both abnormal genes and thus have CF. Marcie was the unlucky one. Her sister was free of the disease but a "carrier" by genetic testing.
Sally was very committed to learning and focusing on what could be done for Marcie. Rich was angry about the whole thing and distancing himself. By the time Marcie transferred to my practice, Rich and Sally had been divorced several years earlier. Sally, as many parents with CF children, had become very well versed in CF care, advocacy, and support. She had a very close bond with Marcie. Much of their education came from support of the Cystic Fibrosis Foundation and their national registry for CF.
She learned that CF problems were related to very thick mucous secretions in the lungs and that a variety of aerosols were very beneficial. Early treatment of lung infections was very important as was watching the levels of fat soluble vitamins in the blood (D,E,A and K). The pancreas did not secrete enzymes normally so enzyme pills were part of the daily regimen along with vitamins. Calories were counted and weight closely monitored because normal digestion was impaired.
At least once or twice a year there would be a severe flare up with respiratory infections requiring hospitalization. Much to her chagrin, the hospital would insist on putting Marcie on the pediatric unit where the nurses were much more versed in CF care. But this way she did get a private room which pleased her.
Marcie was excelling in school and growing into a lovely young lady. She hoped to train as a nurse and, in early high school years, volunteered at a local hospital. She had started dating and had a wide circle of friends.
During a hospitalization at age 16 she complained of "peeing all the time". I asked the nurses and resident if they had done a urinalysis or checked a blood sugar. The latter turned out to be 310 (normal less than 100). So Marcie's pancreas was failing and she was now diabetic complicating her care further. Additionally her liver was becoming involved and she'd had some bleeding from veins in her lower esophagus which ultimately required more intervention.
Despite this Marcie tried to set goals for herself. Her friends and Mom were her lifeline. She knew her time was limited and the goals became more near term.
Partly to reassure Marcie, the family (and me) that all was being done that could be done medically, I referred her to the University Adult CF clinic which was actively involved in research and patient care. As pediatric care has improved, the average lifespan of a CF patient has expanded from early childhood now to age 35. The consultation was supportive but didn't offer new avenues of care. Marcie had so many complications that her outlook was looking progressively poor and the hospitalizations more frequent. At that time she did not meet the criteria for lung/liver/pancreas transplant unfortunately.
So I was faced with the difficult situation of discussing end of life issues with a young woman who was just turning 18 and about to graduate from high school. All along, Sally encouraged Marcie to "go for it" and live life to the fullest. But time was running out. Marcie had seen CF friends die and found discussing her own mortality very difficult and depressing. She did manage to say that if there was really no hope that she wouldn't want to keep going on machines.
As Marcie neared the end of her senior year the deterioration in lung function continued, but she had her heart set on going to the senior prom. Her boyfriend said "it was no big deal". Marcie though pictured this as an all important once in a lifetime event. She new it was risky in terms of her health as the day approached so she and Sally, her very supportive mom, had a heart to heart discussion. Sally managed to find the inner strength to support Marcie's wish. So Marcie, delighted, went out for the big night - and had a wonderful time.
But within a week she had acute respiratory failure, presented to a nearby emergency room where was intubated and placed on a respirator. She was then transferred to my care in the ICU.. There was no improvement over the next three days. The very poor lung function at baseline showed no improvement. Heavy sedation was required to keep Marcie comfortable and from pulling out her tubes.
There were daily conferences in the ICU. Sally, as a mom, was reluctant to accept that her daughter wasn't going to get better. I discussed the situation with my colleague at the University Hospital and was very delighted that he offered to come across the lake to help with the family discussion and decision making. He affirmed that Marcie could not make it off the ventilator and that keeping her alive this way was only prolonging the dying process.
At the end, it was agreed to wait until Sunday since her birthday was on Saturday. Sally, the boyfriend, sister and pastor were all at the bedside. I turned off all the monitors in the room gave them all time to say their goodbyes and shed tears. It was a sad scene for all the nurses who had given her such excellent care. After asking the family to briefly step outside, we gave enough sedation for comfort and removed the endotracheal tube. I had prepared the family to expect shallow respirations. They held her and talked to her at the end.
Her mom, Sally, said to me though tears, "When she was a little girl I dreamed of so many things for Marcie. She was stronger than I and helped me through my sadness. The one bright spot is that she achieved a special goal - going to the prom."
Comment: In the modern Intensive Care Units, there are many patients on ventilators to support their breathing while trying to heal and recover from a variety of diseases and injuries. Some do heal and return to reasonable function. But some worsen, develop complications, and have multiple organs fail. Surprisingly about 70% of deaths in the ICU's are related to withdrawal of the ventilator - the only thing that is prolonging the dying process. The decision to withdraw the ventilator, even when expected and supported, is never easy but it does show respect for the wishes of patient as reflected in family discussions. There are times when the ventilator is continued for days, weeks, or even months when the surrogate decision makers disagree - but fortunately the futile continuation of care is unusual. Ethics consultations and recommendations are invaluable in such situations.
Her Pediatrician had suspected the problem shortly after birth. She wasn't growing normally, had nasal congestion, and more respiratory infections than usual. A sweat chloride test was ordered which was positive. The diagnosis was cystic fibrosis (CF). The diagnosis was devastating to Rich and Sally, her mom and dad. Both of them were free of the disease, yet they were "carriers" of an abnormal gene which meant that statistically 25% of their children would have both abnormal genes and thus have CF. Marcie was the unlucky one. Her sister was free of the disease but a "carrier" by genetic testing.
Sally was very committed to learning and focusing on what could be done for Marcie. Rich was angry about the whole thing and distancing himself. By the time Marcie transferred to my practice, Rich and Sally had been divorced several years earlier. Sally, as many parents with CF children, had become very well versed in CF care, advocacy, and support. She had a very close bond with Marcie. Much of their education came from support of the Cystic Fibrosis Foundation and their national registry for CF.
She learned that CF problems were related to very thick mucous secretions in the lungs and that a variety of aerosols were very beneficial. Early treatment of lung infections was very important as was watching the levels of fat soluble vitamins in the blood (D,E,A and K). The pancreas did not secrete enzymes normally so enzyme pills were part of the daily regimen along with vitamins. Calories were counted and weight closely monitored because normal digestion was impaired.
At least once or twice a year there would be a severe flare up with respiratory infections requiring hospitalization. Much to her chagrin, the hospital would insist on putting Marcie on the pediatric unit where the nurses were much more versed in CF care. But this way she did get a private room which pleased her.
Marcie was excelling in school and growing into a lovely young lady. She hoped to train as a nurse and, in early high school years, volunteered at a local hospital. She had started dating and had a wide circle of friends.
During a hospitalization at age 16 she complained of "peeing all the time". I asked the nurses and resident if they had done a urinalysis or checked a blood sugar. The latter turned out to be 310 (normal less than 100). So Marcie's pancreas was failing and she was now diabetic complicating her care further. Additionally her liver was becoming involved and she'd had some bleeding from veins in her lower esophagus which ultimately required more intervention.
Despite this Marcie tried to set goals for herself. Her friends and Mom were her lifeline. She knew her time was limited and the goals became more near term.
Partly to reassure Marcie, the family (and me) that all was being done that could be done medically, I referred her to the University Adult CF clinic which was actively involved in research and patient care. As pediatric care has improved, the average lifespan of a CF patient has expanded from early childhood now to age 35. The consultation was supportive but didn't offer new avenues of care. Marcie had so many complications that her outlook was looking progressively poor and the hospitalizations more frequent. At that time she did not meet the criteria for lung/liver/pancreas transplant unfortunately.
So I was faced with the difficult situation of discussing end of life issues with a young woman who was just turning 18 and about to graduate from high school. All along, Sally encouraged Marcie to "go for it" and live life to the fullest. But time was running out. Marcie had seen CF friends die and found discussing her own mortality very difficult and depressing. She did manage to say that if there was really no hope that she wouldn't want to keep going on machines.
As Marcie neared the end of her senior year the deterioration in lung function continued, but she had her heart set on going to the senior prom. Her boyfriend said "it was no big deal". Marcie though pictured this as an all important once in a lifetime event. She new it was risky in terms of her health as the day approached so she and Sally, her very supportive mom, had a heart to heart discussion. Sally managed to find the inner strength to support Marcie's wish. So Marcie, delighted, went out for the big night - and had a wonderful time.
But within a week she had acute respiratory failure, presented to a nearby emergency room where was intubated and placed on a respirator. She was then transferred to my care in the ICU.. There was no improvement over the next three days. The very poor lung function at baseline showed no improvement. Heavy sedation was required to keep Marcie comfortable and from pulling out her tubes.
There were daily conferences in the ICU. Sally, as a mom, was reluctant to accept that her daughter wasn't going to get better. I discussed the situation with my colleague at the University Hospital and was very delighted that he offered to come across the lake to help with the family discussion and decision making. He affirmed that Marcie could not make it off the ventilator and that keeping her alive this way was only prolonging the dying process.
At the end, it was agreed to wait until Sunday since her birthday was on Saturday. Sally, the boyfriend, sister and pastor were all at the bedside. I turned off all the monitors in the room gave them all time to say their goodbyes and shed tears. It was a sad scene for all the nurses who had given her such excellent care. After asking the family to briefly step outside, we gave enough sedation for comfort and removed the endotracheal tube. I had prepared the family to expect shallow respirations. They held her and talked to her at the end.
Her mom, Sally, said to me though tears, "When she was a little girl I dreamed of so many things for Marcie. She was stronger than I and helped me through my sadness. The one bright spot is that she achieved a special goal - going to the prom."
Comment: In the modern Intensive Care Units, there are many patients on ventilators to support their breathing while trying to heal and recover from a variety of diseases and injuries. Some do heal and return to reasonable function. But some worsen, develop complications, and have multiple organs fail. Surprisingly about 70% of deaths in the ICU's are related to withdrawal of the ventilator - the only thing that is prolonging the dying process. The decision to withdraw the ventilator, even when expected and supported, is never easy but it does show respect for the wishes of patient as reflected in family discussions. There are times when the ventilator is continued for days, weeks, or even months when the surrogate decision makers disagree - but fortunately the futile continuation of care is unusual. Ethics consultations and recommendations are invaluable in such situations.
Wednesday, December 9, 2009
Seeing Through Another's Eyes
I have tried to write a letter of thanks but don't know what to say or even how to begin. I don't know the persons I am writing to, but part of their loved one is literally now a part of me.
It began with a phone call from my brother. "Jim, what the hell is Fuchs' Dystrophy anyway - do you have it too?"
I racked my brain and tried to dust off distant learning from medical school, but I had to turn to the internet for answers. My brother had begun to have hazy vision and could no longer follow the flight of a golf ball, or even a hard line drive in baseball. He couldn't read clearly until early afternoon. The problem was that his cornea (the outer layer of the eye) was waterlogged. Blowing a hairdryer into his eyes helped some as did a strong solution of salt water - but these really didn't help enough and the problem was worsening.
His ophthalmologist explained to him that this was an inherited disease. Our parents had passed away and we knew that their eyesight wasn't the greatest in their 80's and 90's but they were never diagnosed with Fuchs. The treatment options were explained to him: no treatment (leading possibly to scarring and blindness), the traditional corneal transplant, or the relatively new Descemet's membrane transplant (called DSAEK which is basically a partial corneal transplant).
The cornea, I discovered, is an absolutely amazing part of our body. This window for our vision has five layers and, with its curvature, provides two-thirds of the refraction needed for clear vision. The innermost layer, the endothelium, produces Descemet's membrane. The function of this region is to pump water out of the cornea to keep it crystalline clear. So basically it's our own sump pump built into the cornea. In Fuchs, the endothelial cells start to die off prematurely and consequently the cornea starts to swell affecting vision.
So my brother underwent the DSAEK procedure in both eyes and had a stunning result. He's now back to golf (without a spotter) and has excellent vision.
But then it was my turn. I thought initially it was cataracts, but it turned out that I was, like my brother, in the unlucky 50% inheritance chain. The procedure felt strange. I was in my own clinic where I knew everyone, but they appropriately kept a professional demeanor asking my name and birth date three times as part of the safety controls. The corneal surgeon had extensive experience and my confidence was high. The procedure was under local with "conscious sedation". After an tiny incision and stripping a button of the ineffective endothelium from my eye, a similar sized button from a cadaver was inserted. An air bubble was then introduced to keep the graft in place while I laid on my back for an hour before going home and lying on my back some more. Amazingly the vision after 4 days cleared, the images were sharp and the halos gone.
So what about the cadaver? I hadn't given my donor much thought until I tried to write a letter of thanks to the loved ones. My transplant of course was pretty minor compared to a kidney or lung transplant, yet every time I open my eyes I'm most thankful that someone was so thoughtful in giving part of themselves to others.
I had so many questions. What happened to my donor? How old? Was it expected or sudden? How can I really express my thankfulness? I've always checked the box "organ donor" on my driver's license but never really given it much thought. But the fact is I now am literally seeing more clearly through another's eyes as I write this. An anonymous gift of one person to the person of another. I still must try to write the letter.
It began with a phone call from my brother. "Jim, what the hell is Fuchs' Dystrophy anyway - do you have it too?"
I racked my brain and tried to dust off distant learning from medical school, but I had to turn to the internet for answers. My brother had begun to have hazy vision and could no longer follow the flight of a golf ball, or even a hard line drive in baseball. He couldn't read clearly until early afternoon. The problem was that his cornea (the outer layer of the eye) was waterlogged. Blowing a hairdryer into his eyes helped some as did a strong solution of salt water - but these really didn't help enough and the problem was worsening.
His ophthalmologist explained to him that this was an inherited disease. Our parents had passed away and we knew that their eyesight wasn't the greatest in their 80's and 90's but they were never diagnosed with Fuchs. The treatment options were explained to him: no treatment (leading possibly to scarring and blindness), the traditional corneal transplant, or the relatively new Descemet's membrane transplant (called DSAEK which is basically a partial corneal transplant).
The cornea, I discovered, is an absolutely amazing part of our body. This window for our vision has five layers and, with its curvature, provides two-thirds of the refraction needed for clear vision. The innermost layer, the endothelium, produces Descemet's membrane. The function of this region is to pump water out of the cornea to keep it crystalline clear. So basically it's our own sump pump built into the cornea. In Fuchs, the endothelial cells start to die off prematurely and consequently the cornea starts to swell affecting vision.
So my brother underwent the DSAEK procedure in both eyes and had a stunning result. He's now back to golf (without a spotter) and has excellent vision.
But then it was my turn. I thought initially it was cataracts, but it turned out that I was, like my brother, in the unlucky 50% inheritance chain. The procedure felt strange. I was in my own clinic where I knew everyone, but they appropriately kept a professional demeanor asking my name and birth date three times as part of the safety controls. The corneal surgeon had extensive experience and my confidence was high. The procedure was under local with "conscious sedation". After an tiny incision and stripping a button of the ineffective endothelium from my eye, a similar sized button from a cadaver was inserted. An air bubble was then introduced to keep the graft in place while I laid on my back for an hour before going home and lying on my back some more. Amazingly the vision after 4 days cleared, the images were sharp and the halos gone.
So what about the cadaver? I hadn't given my donor much thought until I tried to write a letter of thanks to the loved ones. My transplant of course was pretty minor compared to a kidney or lung transplant, yet every time I open my eyes I'm most thankful that someone was so thoughtful in giving part of themselves to others.
I had so many questions. What happened to my donor? How old? Was it expected or sudden? How can I really express my thankfulness? I've always checked the box "organ donor" on my driver's license but never really given it much thought. But the fact is I now am literally seeing more clearly through another's eyes as I write this. An anonymous gift of one person to the person of another. I still must try to write the letter.
Saturday, November 28, 2009
What Comes Next?
William would come to see me every three months for his COPD (Chronic Obstructive Pulmonary Disease). We would chat about his disease, his meds, and his grief. He had lost his wife a few years back, but after 52 years he found it very hard to be without her.
On one visit he said, "Doctor deMaine, can I tell you something - and promise you won't think I'm crazy?"
"Sure."
"Well, my wife and I always had a favorite restaurant where we'd go for our dinner on Sundays. Let me tell you why I still go there. I wear my old tie and coat and sit in our favorite booth. And I swear that I see her. Her image is perfect, younger, and smiling. She looks beautiful. She doesn't really communicate except with the smile - which seems to me to say that she's waiting for me."
Other patients related different views. A very sweet British lady told me on an office visit that she had been a widow now for six months.
"That's sad," I said. "Do you believe in an afterlife?"
"Of course", she replied.
"How about marriage in Heaven?"
"Yes."
Trying to tie this together I said, "That's wonderful. Perhaps you and your husband can spend eternity together."
She paused, tilted her head, smiled and said, "Well, I might play the field a bit first!"
There are many views of the afterlife that vary from none to quite fanciful. Harvard theologian Huston Smith gave his views in the Ingersoll Lecture called Intimations of Immortality. In his lecture he highlighted Swedenborg's expositions on the next life. Also, he discussed the near death experiences in Raymond Moody's book "Life After Life".
Helen Keller with her blindness and deafness was, in those senses, cut off from the world. Yet she was a great student of the Bible and eventually became very influenced by Swedenborg's writings. ... "she began to read much of Swedenborg's works as had been put into Braille:
The 1998 movie, What Dreams May Come, gives a vivid and possibly realistic picture of what Heaven and Hell could be like. The film has many parallels with Swedenborg's book, "Heaven and Hell." We are alive, active, useful, on the go and finding a home with those we love.
Mark Twain's irreverent views on religion are highlighted in humorously poignant ways: "Go to Heaven for the climate; go to Hell for the company." Further, from Captain Stormfield's Visit to Heaven, .."Now you just remember this - heaven is as blissful and lovely as it can be; but it's just the busiest place you ever heard of. There ain't any idle people here after the first day. Singing hymns and waving palm branches through all eternity is pretty when you hear about it in the pulpit, but it's as poor a way to put in valuable time as a body could contrive. It would just make a heaven of warbling ignoramuses, don't you see?"
My education along these lines was when I attended Bryn Athyn College for two years. I was immersed in studies of Plato, Aristotle, and others right up though the age of enlightenment including Swedenborg. The emphasis was that there are two capabilities that make us uniquely human: freedom and rationality. We were charged to wisely apply learning to life - heady stuff for a 20 year old.
So does any of this carry over into medical practice? Since we are all in some sense spiritual beings as well as natural beings, it seems logical for a physician to deal with the whole person, particularly around the time of crisis or death. I'm not one who thinks Christians have the "inside path" or die easier than atheists. I had some confirmed non-believers in my care who died comfortably believing that "that was that." They appeared to be good people who had led good lives.
But others want to talk, are afraid, or have regrets. All hospitals now have chaplains. Many ministers, rabbis, imams and priests make frequent hospital and nursing home visits. Doctors of course, need to respect all beliefs and understand boundaries. Although I loved having philosophical and religious discussions with patients, I always tried to approach it from their interest and comfort zone.
One Pulmonologist in the area here would ask patients to pray with him before he did their procedure such as a bronchoscopy. Clearly this was inappropriate and boundaries were violated (his group let him go). Patients can, at times, cross boundaries but the "power differential" is much less. I had one very sweet lady who was so sad I wouldn't make it to Heaven because I hadn't been baptized in her faith!
If common sense and good will prevail, spiritual beliefs can be an important part of the conversation as we approach the end of life. I encouraged my students, interns and residents to not avoid exploring these areas. Healing occurs on many levels.
On one visit he said, "Doctor deMaine, can I tell you something - and promise you won't think I'm crazy?"
"Sure."
"Well, my wife and I always had a favorite restaurant where we'd go for our dinner on Sundays. Let me tell you why I still go there. I wear my old tie and coat and sit in our favorite booth. And I swear that I see her. Her image is perfect, younger, and smiling. She looks beautiful. She doesn't really communicate except with the smile - which seems to me to say that she's waiting for me."
Other patients related different views. A very sweet British lady told me on an office visit that she had been a widow now for six months.
"That's sad," I said. "Do you believe in an afterlife?"
"Of course", she replied.
"How about marriage in Heaven?"
"Yes."
Trying to tie this together I said, "That's wonderful. Perhaps you and your husband can spend eternity together."
She paused, tilted her head, smiled and said, "Well, I might play the field a bit first!"
There are many views of the afterlife that vary from none to quite fanciful. Harvard theologian Huston Smith gave his views in the Ingersoll Lecture called Intimations of Immortality. In his lecture he highlighted Swedenborg's expositions on the next life. Also, he discussed the near death experiences in Raymond Moody's book "Life After Life".
Helen Keller with her blindness and deafness was, in those senses, cut off from the world. Yet she was a great student of the Bible and eventually became very influenced by Swedenborg's writings. ... "she began to read much of Swedenborg's works as had been put into Braille:
Here was a faith [she says] that emphasized what I felt so keenly -- the separateness between soul and body, between a realm I could picture as a whole and the chaos of fragmentary things and limited physical senses met at every turn . . . As I realized the meaning of what I read, my soul seemed to expand and gain confidence amid the difficulties which beset me. ."
The 1998 movie, What Dreams May Come, gives a vivid and possibly realistic picture of what Heaven and Hell could be like. The film has many parallels with Swedenborg's book, "Heaven and Hell." We are alive, active, useful, on the go and finding a home with those we love.
Mark Twain's irreverent views on religion are highlighted in humorously poignant ways: "Go to Heaven for the climate; go to Hell for the company." Further, from Captain Stormfield's Visit to Heaven, .."Now you just remember this - heaven is as blissful and lovely as it can be; but it's just the busiest place you ever heard of. There ain't any idle people here after the first day. Singing hymns and waving palm branches through all eternity is pretty when you hear about it in the pulpit, but it's as poor a way to put in valuable time as a body could contrive. It would just make a heaven of warbling ignoramuses, don't you see?"
My education along these lines was when I attended Bryn Athyn College for two years. I was immersed in studies of Plato, Aristotle, and others right up though the age of enlightenment including Swedenborg. The emphasis was that there are two capabilities that make us uniquely human: freedom and rationality. We were charged to wisely apply learning to life - heady stuff for a 20 year old.
So does any of this carry over into medical practice? Since we are all in some sense spiritual beings as well as natural beings, it seems logical for a physician to deal with the whole person, particularly around the time of crisis or death. I'm not one who thinks Christians have the "inside path" or die easier than atheists. I had some confirmed non-believers in my care who died comfortably believing that "that was that." They appeared to be good people who had led good lives.
But others want to talk, are afraid, or have regrets. All hospitals now have chaplains. Many ministers, rabbis, imams and priests make frequent hospital and nursing home visits. Doctors of course, need to respect all beliefs and understand boundaries. Although I loved having philosophical and religious discussions with patients, I always tried to approach it from their interest and comfort zone.
One Pulmonologist in the area here would ask patients to pray with him before he did their procedure such as a bronchoscopy. Clearly this was inappropriate and boundaries were violated (his group let him go). Patients can, at times, cross boundaries but the "power differential" is much less. I had one very sweet lady who was so sad I wouldn't make it to Heaven because I hadn't been baptized in her faith!
If common sense and good will prevail, spiritual beliefs can be an important part of the conversation as we approach the end of life. I encouraged my students, interns and residents to not avoid exploring these areas. Healing occurs on many levels.
Monday, November 16, 2009
Where's the Best City to Die?
When I ask patients about their greatest hopes or fears at the end of life I often get a comment like this, "Well, my biggest fear is that no one will understand what I want and that I'll end up being a burden to my family. I'm just afraid that the people caring for me might put me through hopeless painful attempts to keep me alive and that I won't have any say."
As we go through the discussion, often people haven't even begun to have conversations with their families and loved ones about death. It often takes a scare or serious illness to raise the topic, but then we might not be mentally competent. Even people who've had the discussions might not have completed a Durable Power of Attorney for Health Care or a Living Will. Or if they have done these, they are at times filed away in a hard to access spot and may not have been reviewed for years. Electronic records and national living will registries have now made it possible for some medical systems and individuals to retrieve important information like Living Wills 24/7.
In general medical system defaults to treatment when it comes to saving lives. When 911 is called or you present to an emergency room, if there are no instructions to the contrary (such as a POLST form) and it's very urgent, the medics will understandably and appropriately initiate treatment. But this is similar to having surgery without understanding the risks or benefits. When we have a cancer diagnosis, are very elderly, or have a combination of serious chronic conditions, we may want to ask for limitations in "heroic care". Hence a program like Respecting Choices in La Crosse Wisconsin which is actively reaching out and helping people complete advance directives.
The Gunderson Clinic in La Crosse has shown us a powerful way to bring end of life discussions to a community in such an effective way that 96% of all deaths there have advance directives completed. The main reason for the directives is to respect a patient's wishes. The ethical principles involved are to respect a person's autonomy and to do no harm. There have been significant expenses incurred by the hospital to keep this program operating. Even so, they funded the program because it was the right thing to do.
"At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it's more than $75,000."
This is not rationing. There aren't (and never were) proposals for "death panels". But there is a proposal —"it's in the health bill passed by the House of Representatives — that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it."
It's encouraging that the medical professions, the public, and now the politicians are seriously engaging in this area. La Crosse is a powerful model leading the way.
As we go through the discussion, often people haven't even begun to have conversations with their families and loved ones about death. It often takes a scare or serious illness to raise the topic, but then we might not be mentally competent. Even people who've had the discussions might not have completed a Durable Power of Attorney for Health Care or a Living Will. Or if they have done these, they are at times filed away in a hard to access spot and may not have been reviewed for years. Electronic records and national living will registries have now made it possible for some medical systems and individuals to retrieve important information like Living Wills 24/7.
In general medical system defaults to treatment when it comes to saving lives. When 911 is called or you present to an emergency room, if there are no instructions to the contrary (such as a POLST form) and it's very urgent, the medics will understandably and appropriately initiate treatment. But this is similar to having surgery without understanding the risks or benefits. When we have a cancer diagnosis, are very elderly, or have a combination of serious chronic conditions, we may want to ask for limitations in "heroic care". Hence a program like Respecting Choices in La Crosse Wisconsin which is actively reaching out and helping people complete advance directives.
The Gunderson Clinic in La Crosse has shown us a powerful way to bring end of life discussions to a community in such an effective way that 96% of all deaths there have advance directives completed. The main reason for the directives is to respect a patient's wishes. The ethical principles involved are to respect a person's autonomy and to do no harm. There have been significant expenses incurred by the hospital to keep this program operating. Even so, they funded the program because it was the right thing to do.
"At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it's more than $75,000."
This is not rationing. There aren't (and never were) proposals for "death panels". But there is a proposal —"it's in the health bill passed by the House of Representatives — that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it."
It's encouraging that the medical professions, the public, and now the politicians are seriously engaging in this area. La Crosse is a powerful model leading the way.
Thursday, November 12, 2009
Who's in Control?
Vonnie was new to my practice. She came in, looked me in the eye and said, "I'm here because I have sarcoidosis. I've looked you up in the Directory of Medical Specialists, talked to friends at the University, and have decided that I want you to be my doctor. Vonnie, I quickly surmised, would be fun but maybe a challenge to care for.
She taught medical terminology to medical assistants so knew all about pulmonary functions, prednisone, rales, wheezes and all the organs which could be affected by her disease. I was just a young pulmonologist at that time and tried to assert some control or at least set some boundaries. We negotiated what tests needed to be done. She was fine with that, but treatment was another issue.
Her disease was serious and progressive. Sarcoidosis was initially named for its red lumpy skin lesions, the name literally meaning "flesh-like" (sarcasm on the other hand literally means "cutting through the flesh"). Small clusters of lymphocytes can multiply and congregate in literally any organ in the body: particularly lungs, liver, eyes, and skin. Researchers have spent a lifetime looking for the cause such as an infectious agent or some kind of environmental exposure. Lots of theories have led up blind alleys. Most patients with sarcoidosis have a benign course often with complete spontaneous resolution, but then there are some like Vonnie, where it is relentlessly progressing.
Vonnie hated the prednisone side effects. The common ones of weight gain, puffiness, bruising, etc. she could put up with, but the mental effects were disabling. She felt spacey, irritable, and just not herself. It was straining family relationships which were all important to her.
Over time, I learned to listen to Vonnie. She reminded me, "Dr. deMaine, you do remember Francis Peabody's dictum don't you."
I nodded.
"The secret of caring for the patient is to care for the patient."
In repartee I said, Vonnie do you remember what the root word of "doctor" means?
"Of course" she smiled "docere 'to teach'. You're my teacher aren't you?"
As things worsened Vonnie's family rallied. Her strong Catholic faith helped her to persevere. She smiled and said, "We Catholics understand suffering!" The end came quickly perhaps from a pulmonary embolism. The family described her wake to me. Vonnie had it all planned: the music, the poems, the silver, china and crystal - and made a wish that all would raise a glass (or two) and wish her well in her new adventure with God.
A few days after her death, a note from Vonnie arrived in my in-box: "Dear Doctor deMaine, Because it is the aim of the physician to heal and to extend life, it must have been difficult for you to let go and allow me to reject the steroids. Yet without the anxiety produced by the prednisone, my spirit is healed. I am 'myself' again. (I did not ask for a personal healing at Lourdes, only that the cause and cure of sarcoidosis be found.) As a result, I am able to embrace life and to live it with a great degree of peace. My children now know me as I am and can learn that death is a companion, not a tyrant. In your own inimitable way, you've give me the kindest of care - a mirror of love with which God tends me. Thanks and prayers, Vonnie."
Comment: One evening about 9 years ago, I was giving a talk to a patient group about sleep apnea. In the middle of the talk, I crossed my arms and felt a very large firm rubbery non-tender lymph node near my elbow. This alarmed me, but I was able to limp through the rest of the talk. Examining myself at home later, I found enlarged lymph nodes all over my body. Immediately I assumed the worst, non-hodgkins lymphoma (cancer of the lymph system). I called the surgeon on call the following day, a Friday, and he took out a lymph node for diagnosis that afternoon. I waited all weekend and then got the smiling message from the surgeon: "You dodged a bullet, it's sarcoidosis".
Mine was different than Vonnie's in that it involved the skin and eyes and not much the lungs. A newer use of the "steroid sparing" drug, methotrexate, worked beautifully for me making me disease free. I wonder if Vonnie is smiling down at me and thinking, "See, doctor and patient, there really isn't much difference. We're a team. Do you remember my prayers at Lourdes?"
She taught medical terminology to medical assistants so knew all about pulmonary functions, prednisone, rales, wheezes and all the organs which could be affected by her disease. I was just a young pulmonologist at that time and tried to assert some control or at least set some boundaries. We negotiated what tests needed to be done. She was fine with that, but treatment was another issue.
Her disease was serious and progressive. Sarcoidosis was initially named for its red lumpy skin lesions, the name literally meaning "flesh-like" (sarcasm on the other hand literally means "cutting through the flesh"). Small clusters of lymphocytes can multiply and congregate in literally any organ in the body: particularly lungs, liver, eyes, and skin. Researchers have spent a lifetime looking for the cause such as an infectious agent or some kind of environmental exposure. Lots of theories have led up blind alleys. Most patients with sarcoidosis have a benign course often with complete spontaneous resolution, but then there are some like Vonnie, where it is relentlessly progressing.
Vonnie hated the prednisone side effects. The common ones of weight gain, puffiness, bruising, etc. she could put up with, but the mental effects were disabling. She felt spacey, irritable, and just not herself. It was straining family relationships which were all important to her.
Over time, I learned to listen to Vonnie. She reminded me, "Dr. deMaine, you do remember Francis Peabody's dictum don't you."
I nodded.
"The secret of caring for the patient is to care for the patient."
In repartee I said, Vonnie do you remember what the root word of "doctor" means?
"Of course" she smiled "docere 'to teach'. You're my teacher aren't you?"
As things worsened Vonnie's family rallied. Her strong Catholic faith helped her to persevere. She smiled and said, "We Catholics understand suffering!" The end came quickly perhaps from a pulmonary embolism. The family described her wake to me. Vonnie had it all planned: the music, the poems, the silver, china and crystal - and made a wish that all would raise a glass (or two) and wish her well in her new adventure with God.
A few days after her death, a note from Vonnie arrived in my in-box: "Dear Doctor deMaine, Because it is the aim of the physician to heal and to extend life, it must have been difficult for you to let go and allow me to reject the steroids. Yet without the anxiety produced by the prednisone, my spirit is healed. I am 'myself' again. (I did not ask for a personal healing at Lourdes, only that the cause and cure of sarcoidosis be found.) As a result, I am able to embrace life and to live it with a great degree of peace. My children now know me as I am and can learn that death is a companion, not a tyrant. In your own inimitable way, you've give me the kindest of care - a mirror of love with which God tends me. Thanks and prayers, Vonnie."
Comment: One evening about 9 years ago, I was giving a talk to a patient group about sleep apnea. In the middle of the talk, I crossed my arms and felt a very large firm rubbery non-tender lymph node near my elbow. This alarmed me, but I was able to limp through the rest of the talk. Examining myself at home later, I found enlarged lymph nodes all over my body. Immediately I assumed the worst, non-hodgkins lymphoma (cancer of the lymph system). I called the surgeon on call the following day, a Friday, and he took out a lymph node for diagnosis that afternoon. I waited all weekend and then got the smiling message from the surgeon: "You dodged a bullet, it's sarcoidosis".
Mine was different than Vonnie's in that it involved the skin and eyes and not much the lungs. A newer use of the "steroid sparing" drug, methotrexate, worked beautifully for me making me disease free. I wonder if Vonnie is smiling down at me and thinking, "See, doctor and patient, there really isn't much difference. We're a team. Do you remember my prayers at Lourdes?"
Tuesday, November 10, 2009
Where to Die?
Speaking recently at a class for patients called "Your Life Your Choices", I stated that most Americans prefer to die at home. Bob raised his hand and said, "Not me!" He was in the minority ten percent. He adamantly didn't want to die at home. I met with him later to learn his story.
It all started when he had trouble swallowing. Liquids went down fine, but a piece of meat seemed to get stuck. The GI specialist recommended an endoscopy to look at the esophagus. Bob reluctantly agreed if he could be sedated enough. The procedure went smoothly, but the pictures showed a rough angry narrowed area which restricted the passage. The diagnosis proven by biopsy was cancer. This was three years ago.
There was the subsequent surgery where a large portion of the esophagus was removed and a portion of his colon inserted to bridge the gap. It worked fine, but the cancer came back with a vengeance. Chemotherapy and radiation therapy seemed to help but his treatment options had been exhausted. The cancer was running its course.
Bob was ninety now but looked much younger. He had to force himself to eat and was loosing weight. A hacking cough had developed because of intermittent aspiration of liquids into his lungs. He knew that pneumonia was around the corner and that his time was limited.
But Bob didn't want to die at home, "Listen doc, I just don't want to have my wife and children watch me die. It's too much of a burden for them. Also, no one wants to buy a house where someone just died."
Bob was now enrolled with Hospice which, in his health plan, was home focused. He loved the nurses, and they had agreed to move him to an inpatient unit at the end though he was still insecure about that actually happening. He had standing orders in a POLST form (Physician Orders for Life Sustaining Treatment) which both he and his doctor had signed. He didn't want CPR but he did want aggressive management of pain and shortness of breath. He was ambivalent about fluids but didn't want a feeding tube. He was worried if he died suddenly when away from the house that Medic I would be called and CPR attempted. To deal with that his wife copied the POLST form and carried it with them whenever out of the house. Hospice continues to be his lifeline and gives him a sense of control. He came up to me after class and thanked me for the review, but mainly for listening and validating his wishes about not dying at home.
Comment: Although I think I would prefer to die at home, Bob's preference was fine and needed to be respected. Bill Moyer has a PBS series on dying called "In Our Own Terms" . In one of the stories, a doctor with esophageal cancer said, "Dying without Hospice care would be like having surgery without anesthesia."
In contrast in the 1960's when I was in medical school at the University of Pennsylvania, we only whispered about death and dying. We were lectured by an eminent surgeon, "Students, never tell a patient that they have cancer. Talk to the family and they will decide what to do." Additionally, I vividly recall the Chief of Surgery at the hospital (for whom a pavilion is now named). I saw patients with him in his private clinic. An elderly woman was referred to him with a far advanced neglected fungating breast cancer which was obviously wide spread. He said to her disingenuously as he held her hand, "My dear, thank goodness you got to me in time."
Fortunately these paternalistic approaches are no longer used or taught, thanks to true pioneer born in 1929. Elizabeth Kubler-Ross, MD , a Swiss psychiatrist taught us about dying in her landmark book "On Death and Dying.". Her work led to the hospice movement and understanding the stages of grief.
Thanks to these dramatic improvements in patient care, I'm hopeful that Bob can feel peaceful and cared for at the end which isn't far away.
It all started when he had trouble swallowing. Liquids went down fine, but a piece of meat seemed to get stuck. The GI specialist recommended an endoscopy to look at the esophagus. Bob reluctantly agreed if he could be sedated enough. The procedure went smoothly, but the pictures showed a rough angry narrowed area which restricted the passage. The diagnosis proven by biopsy was cancer. This was three years ago.
There was the subsequent surgery where a large portion of the esophagus was removed and a portion of his colon inserted to bridge the gap. It worked fine, but the cancer came back with a vengeance. Chemotherapy and radiation therapy seemed to help but his treatment options had been exhausted. The cancer was running its course.
Bob was ninety now but looked much younger. He had to force himself to eat and was loosing weight. A hacking cough had developed because of intermittent aspiration of liquids into his lungs. He knew that pneumonia was around the corner and that his time was limited.
But Bob didn't want to die at home, "Listen doc, I just don't want to have my wife and children watch me die. It's too much of a burden for them. Also, no one wants to buy a house where someone just died."
Bob was now enrolled with Hospice which, in his health plan, was home focused. He loved the nurses, and they had agreed to move him to an inpatient unit at the end though he was still insecure about that actually happening. He had standing orders in a POLST form (Physician Orders for Life Sustaining Treatment) which both he and his doctor had signed. He didn't want CPR but he did want aggressive management of pain and shortness of breath. He was ambivalent about fluids but didn't want a feeding tube. He was worried if he died suddenly when away from the house that Medic I would be called and CPR attempted. To deal with that his wife copied the POLST form and carried it with them whenever out of the house. Hospice continues to be his lifeline and gives him a sense of control. He came up to me after class and thanked me for the review, but mainly for listening and validating his wishes about not dying at home.
Comment: Although I think I would prefer to die at home, Bob's preference was fine and needed to be respected. Bill Moyer has a PBS series on dying called "In Our Own Terms" . In one of the stories, a doctor with esophageal cancer said, "Dying without Hospice care would be like having surgery without anesthesia."
In contrast in the 1960's when I was in medical school at the University of Pennsylvania, we only whispered about death and dying. We were lectured by an eminent surgeon, "Students, never tell a patient that they have cancer. Talk to the family and they will decide what to do." Additionally, I vividly recall the Chief of Surgery at the hospital (for whom a pavilion is now named). I saw patients with him in his private clinic. An elderly woman was referred to him with a far advanced neglected fungating breast cancer which was obviously wide spread. He said to her disingenuously as he held her hand, "My dear, thank goodness you got to me in time."
Fortunately these paternalistic approaches are no longer used or taught, thanks to true pioneer born in 1929. Elizabeth Kubler-Ross, MD , a Swiss psychiatrist taught us about dying in her landmark book "On Death and Dying.". Her work led to the hospice movement and understanding the stages of grief.
Thanks to these dramatic improvements in patient care, I'm hopeful that Bob can feel peaceful and cared for at the end which isn't far away.
Friday, October 30, 2009
It Lasted Until the End
I always looked forward to Harold's visits. Harold knew that he had life threatening pulmonary fibrosis. He also knew that doctor's didn't have the faintest idea as to what was causing it and used quite toxic medications to try to keep it under control. Prednisone seemed to work the best for him.
Somehow he forgave me for all the shortcomings of medical science. He liked to chat about his life during office visits: how his grandson was playing football at Notre Dame; how a granddaughter was loving soccer; how the holiday celebrations were special with his family. Over time I thought I had gotten to know Harold pretty well. But did I really?
He would come in cheerful and bubbling with a tendency to minimize his shortness of breath. His lungs were progressively filling up with scar tissue thus blocking the oxygen in the air from effectively getting through into his blood. An oxygen tank helped and he actually accepted it with grace. We did have some serious discussions with his wife present and he had completed an advance directive stating that he wouldn't want to ever be placed on a breathing machine unless he could rapidly return to meaningful existence. His wife would be in charge if he couldn't make the decision.
One day, during a routine follow up visit in the office, I noted that his severe lung dysfunction had been quite stable for over a year. In the conversation I said, "Harold, you know you're really lucky to still be alive." I was referring to his tests and it was meant to be encouraging, but the result stunned me.
Harold burst into tears and started shaking. I rather helplessly said, "What's going on, did I say something?"
"You don't know how lucky I really am to be alive."
"What do you mean?"
"I was a paratrooper on D-Day. I came down behind the German lines like all my buddies. I didn't know where I was or where they were. It was pure terror. I saw a lot of terrible things and did a lot of shooting. It's never out of my mind."
I immediately understood how wrong I was. I really didn't know Harold well. Here was a true WWII hero, trying to live a normal family life, trying to fight a serious illness, yet suffering from disabling post traumatic stress disorder from 50 years ago!
Harold's defenses took hold fairly rapidly and he actually apologized! I tried to reach out and refer him for counseling but he would have none of it. In future office visits he would deflect questions about his WWII experiences, though he wife would confide to me that he would have night terrors with shouting and waking with drenching sweats.
Harold survived two more years until his pulmonary fibrosis finally caused his demise. I wish I could say that his death was peaceful, but as he weakened his terrors took hold. Our palliative care team fortunately used enough sedation and narcotics to take the edge off. But his PTSD didn't really die until he did.
Somehow he forgave me for all the shortcomings of medical science. He liked to chat about his life during office visits: how his grandson was playing football at Notre Dame; how a granddaughter was loving soccer; how the holiday celebrations were special with his family. Over time I thought I had gotten to know Harold pretty well. But did I really?
He would come in cheerful and bubbling with a tendency to minimize his shortness of breath. His lungs were progressively filling up with scar tissue thus blocking the oxygen in the air from effectively getting through into his blood. An oxygen tank helped and he actually accepted it with grace. We did have some serious discussions with his wife present and he had completed an advance directive stating that he wouldn't want to ever be placed on a breathing machine unless he could rapidly return to meaningful existence. His wife would be in charge if he couldn't make the decision.
One day, during a routine follow up visit in the office, I noted that his severe lung dysfunction had been quite stable for over a year. In the conversation I said, "Harold, you know you're really lucky to still be alive." I was referring to his tests and it was meant to be encouraging, but the result stunned me.
Harold burst into tears and started shaking. I rather helplessly said, "What's going on, did I say something?"
"You don't know how lucky I really am to be alive."
"What do you mean?"
"I was a paratrooper on D-Day. I came down behind the German lines like all my buddies. I didn't know where I was or where they were. It was pure terror. I saw a lot of terrible things and did a lot of shooting. It's never out of my mind."
I immediately understood how wrong I was. I really didn't know Harold well. Here was a true WWII hero, trying to live a normal family life, trying to fight a serious illness, yet suffering from disabling post traumatic stress disorder from 50 years ago!
Harold's defenses took hold fairly rapidly and he actually apologized! I tried to reach out and refer him for counseling but he would have none of it. In future office visits he would deflect questions about his WWII experiences, though he wife would confide to me that he would have night terrors with shouting and waking with drenching sweats.
Harold survived two more years until his pulmonary fibrosis finally caused his demise. I wish I could say that his death was peaceful, but as he weakened his terrors took hold. Our palliative care team fortunately used enough sedation and narcotics to take the edge off. But his PTSD didn't really die until he did.
Wednesday, October 7, 2009
A Body for the Morgue, please!
Cheryl and Susan arrived at the hospital at 6:30 AM. As was their routine, they stopped for their Starbuck's latte and shared family stories as they walked toward the ICU. The two were well known pranksters but were widely respected for being top notch ICU nurses. The whole crew there was like a family. They went to baseball games, picnics, and vacations together. Today was like most other days. They were laughing as they walked into the ICU to meet up with the night shift, but could immediately see something was wrong.
Room three was, in ICU lingo, a disaster scene. There was a crash cart with defibrillator in the room with all drawers open with multiple vials and kits removed. IV poles, procedure trays, towels, drapes, and instruments seemed to tell the story of a failed heroic effort to save a patient, now under a sheet on a gurney.
The night crew was really bummed out. Carol, the night lead, told the story. A 32 year old woman had been admitted in severe sepsis, probably from a liver abscess which ruptured. She had severe internal bleeding, went in to shock and all efforts failed trying to stabilize her for surgery. She died about two hours ago. The heartbroken family had just left.
Cheryl and Susan immediately shifted in to professional mode in order to help Carol and the other RN's, by saying "What can we do to help? Look, you have a bunch of calls to make and lots of charting to do before you can leave. What can we do for you?"
Carol responded, "The best thing you could do to help is to take the body to the morgue while we finish up here. We've prepped the body and it's on the transport cart. We hate to ask but ....."
"We'll do it."
Cheryl and Susan were glad the hour was early, that the family had left, and that they we're unlikely to bump into visitors coming up the back elevator. They could see the form of a fairly small woman under the sheet, but neither of them wanted to look. They were familiar with death, but this case was different. It felt close to home. They were silent in the elevator as they went to the sub-basement where the cold lockers in the morgue were located.
.
It was fairly dim in the long sterile hallway, the only noise being the rubber wheels of the squeaking cart. Then they heard the noise. It sounded like a moan, "oooohhhhh". They stopped, stunned and looked at each other. They knew that gases can escape from deceased bodies making noise on occasion, but this was weird.
After another 15 feet down the hall, the noise came again, even louder, "ooooooohhhhhhmmmmm". Then it was quiet. As they approached the morgue doors, again "ooooooohhhhhmmmmm" and the body began to sit up.
Cheryl and Susan had had enough! They both screamed and ran away leaving the body now sitting upright on the cart. They ran down the hall straight into the arms of their laughing colleagues. The "body" was a co-worker, an RN target of prior pranks. "Revenge" was sweet.
Comment: Gallows humor seems to have a place in high stress occupations such as nursing, medicine, fire fighters, police, teachers, etc. It seems that if we can laugh we can deal with stresses much more effectively. Freud, as might be expected, had a much more complex view: In his 1927 essay Humour (Der Humor) he states his theory of the gallows humor: "The ego refuses to be distressed by the provocations of reality, to let itself be compelled to suffer. It insists that it cannot be affected by the traumas of the external world; it shows, in fact, that such traumas are no more than occasions for it to gain pleasure". An interesting theory, but I personally view gallows humor as a only a temporary release and a momentary deflection with the reality of the traumatic situation remaining at the center.
Currently, gallows humor is surprisingly the subject of an academic conference and has surfaced in Presidential comments. It is also the subject of a review concerning its appropriateness in seriously ill cancer patients.
The above story I know is true. I walked into the ICU that morning just as the hilarity was underway. The RN's are still really good friends. The names, of course, have been changed. I hope you won't offended by this story which may appear disrespectful to some. But I'd agree with George Bernard Shaw who said, "Life does not cease to be funny when people die any more than it ceases to be serious when people laugh." I'd love to have you respond with your reactions and stories.
Room three was, in ICU lingo, a disaster scene. There was a crash cart with defibrillator in the room with all drawers open with multiple vials and kits removed. IV poles, procedure trays, towels, drapes, and instruments seemed to tell the story of a failed heroic effort to save a patient, now under a sheet on a gurney.
The night crew was really bummed out. Carol, the night lead, told the story. A 32 year old woman had been admitted in severe sepsis, probably from a liver abscess which ruptured. She had severe internal bleeding, went in to shock and all efforts failed trying to stabilize her for surgery. She died about two hours ago. The heartbroken family had just left.
Cheryl and Susan immediately shifted in to professional mode in order to help Carol and the other RN's, by saying "What can we do to help? Look, you have a bunch of calls to make and lots of charting to do before you can leave. What can we do for you?"
Carol responded, "The best thing you could do to help is to take the body to the morgue while we finish up here. We've prepped the body and it's on the transport cart. We hate to ask but ....."
"We'll do it."
Cheryl and Susan were glad the hour was early, that the family had left, and that they we're unlikely to bump into visitors coming up the back elevator. They could see the form of a fairly small woman under the sheet, but neither of them wanted to look. They were familiar with death, but this case was different. It felt close to home. They were silent in the elevator as they went to the sub-basement where the cold lockers in the morgue were located.
.
It was fairly dim in the long sterile hallway, the only noise being the rubber wheels of the squeaking cart. Then they heard the noise. It sounded like a moan, "oooohhhhh". They stopped, stunned and looked at each other. They knew that gases can escape from deceased bodies making noise on occasion, but this was weird.
After another 15 feet down the hall, the noise came again, even louder, "ooooooohhhhhhmmmmm". Then it was quiet. As they approached the morgue doors, again "ooooooohhhhhmmmmm" and the body began to sit up.
Cheryl and Susan had had enough! They both screamed and ran away leaving the body now sitting upright on the cart. They ran down the hall straight into the arms of their laughing colleagues. The "body" was a co-worker, an RN target of prior pranks. "Revenge" was sweet.
Comment: Gallows humor seems to have a place in high stress occupations such as nursing, medicine, fire fighters, police, teachers, etc. It seems that if we can laugh we can deal with stresses much more effectively. Freud, as might be expected, had a much more complex view: In his 1927 essay Humour (Der Humor) he states his theory of the gallows humor: "The ego refuses to be distressed by the provocations of reality, to let itself be compelled to suffer. It insists that it cannot be affected by the traumas of the external world; it shows, in fact, that such traumas are no more than occasions for it to gain pleasure". An interesting theory, but I personally view gallows humor as a only a temporary release and a momentary deflection with the reality of the traumatic situation remaining at the center.
Currently, gallows humor is surprisingly the subject of an academic conference and has surfaced in Presidential comments. It is also the subject of a review concerning its appropriateness in seriously ill cancer patients.
The above story I know is true. I walked into the ICU that morning just as the hilarity was underway. The RN's are still really good friends. The names, of course, have been changed. I hope you won't offended by this story which may appear disrespectful to some. But I'd agree with George Bernard Shaw who said, "Life does not cease to be funny when people die any more than it ceases to be serious when people laugh." I'd love to have you respond with your reactions and stories.
Thursday, October 1, 2009
Tragic Medical Mistakes
Scene 1: A medical student at a prestigious East Coast medical school, is doing a BSP test (now very outdated) to evaluate a patient's liver functions. The BSP clear fluid vials are in the same container on the cart as the epinephrine. The student accidentally administers a lethal dose of IV epinephrine to the unsuspecting patient - sudden excruciating headache, then cardiac arrest.
Scene 2: There's a diagnosis of recurrent lymphoma in the ICU. The oncologist gives a phone order for cytoxan, prednisone, and vincristine. The recorder, working a double shift, mistakenly writes the vincristine daily for 5 days similar to the prednisone order. The fatal dosage is given to the patient over the ensuing days. He dies in bone marrow failure.
Scene3:In a radiology department, a cleaning solution rather than a dye is accidentally injected into a patient's femoral artery leading to a painful death.
Scene 4: A pharmacist fills a prescription for a patient with asthma. Instead of prednisone, the pharmacist mistakenly counts out digoxin, a pill given for heart disease. Digoxin can have severe side effects even at a dosage of one a day. The prescription is followed by the patient: take 8 a day for 3 days, 6 a day for 3 days, etc. The patient calls the MD about the symptoms of severe nausea and notes the pills look different than usual. The medication is stopped and with treatment the patient luckily survives digoxin poisoning.
Medical errors frequently hit the headlines. Also, there are a number of published articles in the medical literature, even a report to the President. Magazine articles, such as "How the American Health Care System Killed My Father", can be both thought provoking, and provocatively accusatory. Stress and fatigue often play a role.
Medicine is not only a proud profession; it is also highly regulated. Currently doctors, nurses, pharmacists and others can face hospital sanctions, medical disciplinary boards, media scorn, and malpractice threats when they make mistakes. In most situations, a number of things have to go wrong at the same time in order for the mistake to occur. None of the above are my personal mistakes, but "I've been there, done that" and I guess I'm still reluctant to publish my own!
On a personal level it's humiliating and devastating to be involved in a serious mistake. I sat down with a psychiatrist friend after a significant mistake and it helped to talk it out, but the hospital's legal department had to be notified, affected family members met with, and eventual reports to the state dealt with (and this is in the middle of a 60+ hour week). Fortunately I was not sued, but the worry was palpable.
There's pretty good data now, that fessing up is the best thing to do from a legal standpoint and certainly from the moral view. But believe me, it's not easy when you'd rather hide. When one patient died after a procedure that I probably shouldn't have attempted because he was so sick, I sat down with the family and explained the whole sequence. The son had lots of questions, but then looked reflective and said "It must be hard to be a doctor sometimes. Look it's OK. Dad was going nowhere and he's in a better place now." Basically, he had let me off the hook.
On the prevention side, there's good data from systems engineers (like Toyota and Boeing) that critical mistakes can often be prevented with good quality management and systems surveillance. All hospitals and major clinics have extensive quality control and review. The answers can be simple or complex. For example, for some recent eye surgery I had, I was asked my name and birth date three times by three separate people (even though they all knew me) - along with what operation I was having and on which side. These quality/safety techniques require constant review, updating, and reporting.
There are quality ratings of hospitals by procedures that can be reviewed. The hospital that does large numbers of, for example, carotid surgeries will almost always have better outcomes and fewer mistakes than the hospital that only does a few. It brings into question the future role of the smaller hospitals. The issue is not so much mistakes as the inability to match the experience and quality of an institution that does large number of a complex procedure.
How do we deal with all the parties involved in a mistake (the patient, family, providers, institution, legal, insurer, etc.)? Mistakes can be honestly dealt with. It is best for all involved to personally make a face to face apology! Sometimes one is forgiven, then sometimes not. But if animosity can be decreased, often a settlement can be reached after an honest admission of a mistake.. Involving the patient and/or loved ones in a case review with all present can be very powerful. It's very hard to stay angry or want to punish someone who can look you in the eye and sincerely apologize, plus actively listening to all your concerns. There comes a point that we all recognize that we're "only human."
Scene 2: There's a diagnosis of recurrent lymphoma in the ICU. The oncologist gives a phone order for cytoxan, prednisone, and vincristine. The recorder, working a double shift, mistakenly writes the vincristine daily for 5 days similar to the prednisone order. The fatal dosage is given to the patient over the ensuing days. He dies in bone marrow failure.
Scene3:In a radiology department, a cleaning solution rather than a dye is accidentally injected into a patient's femoral artery leading to a painful death.
Scene 4: A pharmacist fills a prescription for a patient with asthma. Instead of prednisone, the pharmacist mistakenly counts out digoxin, a pill given for heart disease. Digoxin can have severe side effects even at a dosage of one a day. The prescription is followed by the patient: take 8 a day for 3 days, 6 a day for 3 days, etc. The patient calls the MD about the symptoms of severe nausea and notes the pills look different than usual. The medication is stopped and with treatment the patient luckily survives digoxin poisoning.
Medical errors frequently hit the headlines. Also, there are a number of published articles in the medical literature, even a report to the President. Magazine articles, such as "How the American Health Care System Killed My Father", can be both thought provoking, and provocatively accusatory. Stress and fatigue often play a role.
Medicine is not only a proud profession; it is also highly regulated. Currently doctors, nurses, pharmacists and others can face hospital sanctions, medical disciplinary boards, media scorn, and malpractice threats when they make mistakes. In most situations, a number of things have to go wrong at the same time in order for the mistake to occur. None of the above are my personal mistakes, but "I've been there, done that" and I guess I'm still reluctant to publish my own!
On a personal level it's humiliating and devastating to be involved in a serious mistake. I sat down with a psychiatrist friend after a significant mistake and it helped to talk it out, but the hospital's legal department had to be notified, affected family members met with, and eventual reports to the state dealt with (and this is in the middle of a 60+ hour week). Fortunately I was not sued, but the worry was palpable.
There's pretty good data now, that fessing up is the best thing to do from a legal standpoint and certainly from the moral view. But believe me, it's not easy when you'd rather hide. When one patient died after a procedure that I probably shouldn't have attempted because he was so sick, I sat down with the family and explained the whole sequence. The son had lots of questions, but then looked reflective and said "It must be hard to be a doctor sometimes. Look it's OK. Dad was going nowhere and he's in a better place now." Basically, he had let me off the hook.
On the prevention side, there's good data from systems engineers (like Toyota and Boeing) that critical mistakes can often be prevented with good quality management and systems surveillance. All hospitals and major clinics have extensive quality control and review. The answers can be simple or complex. For example, for some recent eye surgery I had, I was asked my name and birth date three times by three separate people (even though they all knew me) - along with what operation I was having and on which side. These quality/safety techniques require constant review, updating, and reporting.
There are quality ratings of hospitals by procedures that can be reviewed. The hospital that does large numbers of, for example, carotid surgeries will almost always have better outcomes and fewer mistakes than the hospital that only does a few. It brings into question the future role of the smaller hospitals. The issue is not so much mistakes as the inability to match the experience and quality of an institution that does large number of a complex procedure.
How do we deal with all the parties involved in a mistake (the patient, family, providers, institution, legal, insurer, etc.)? Mistakes can be honestly dealt with. It is best for all involved to personally make a face to face apology! Sometimes one is forgiven, then sometimes not. But if animosity can be decreased, often a settlement can be reached after an honest admission of a mistake.. Involving the patient and/or loved ones in a case review with all present can be very powerful. It's very hard to stay angry or want to punish someone who can look you in the eye and sincerely apologize, plus actively listening to all your concerns. There comes a point that we all recognize that we're "only human."
Monday, September 21, 2009
Ethics on Thin Ice
A call came about noon a few years ago that a patient I'll call Stella was being admitted once again. She had come into the ER from her nursing home to receive transfusions. These were now needed every two weeks to keep her alive. The problem was that every time Stella was moved she decompensated. Her Alzheimer's was severe. She no longer recognized her family. She was now 83 and slowing dying, but not terminal if one defines it by an expectation to die within 6 months.
Stella had aplastic anemia. Her bone marrow could no longer make enough red blood cells to keep her alive. Transfusions, by medical protocol, could not be given in the nursing home. Hence the ambulance to the ER and back to get two units of packed red blood cells every two weeks. But many times poor Stella would start screaming due to the needle sticks, require sedative medications and then wind up getting admitted. It was kind of a medical not so merry-go-round.
This was one of perhaps 10 admissions, but it was the first time she was on my service. I knew Stella and the family and decided to try to get her husband, children, and in-laws together to discuss her end of life wishes. In my own mind, I wasn't sure whether the transfusions were prolonging beneficial life for Stella or making her death prolonged and miserable.
We set aside an hour late one afternoon when everyone could make it to a hospital conference room. My favorite social worker who had been working with the family joined us as did her primary nurse. We reviewed Stella's history and had the family fill in some details actively participating. We allowed time for expression of feelings and "if only's" and wishes. The family seemed together and realistic about her very poor outlook and even poorer quality of life.
Then we discussed options about the transfusions. When we began to talk about the option of hospice and no further transfusions, the husband "Morrie", jumped out of his chair very agitated almost shouting, "This is like Dachau." The room was silent as he stomped out.
The others, though, wanted to keep talking. They noted that Morrie had a diagnosis of early Alzheimer's himself and was needing more care, supervision and guidance. But they honored his opinion and didn't want to do anything he objected to. Stella never completed an advance directive, but the family felt she would never want to continue living in her current state. I suggested that I meet individually with Morrie to discuss the transfusions further.
The next day, I sat down with Morrie. He wasn't agitated and seemed eager to discuss Stella's care. In discussing the ethics of the transfusions, I told him that I feared that the transfusions might actually be harming her. To my great surprise he said, "You know, I agree with you, she might get AIDS!"
With Morrie fixated on the AIDS fear, the family was content with no further transfusions . Hospice was consulted and provided wonderful support to Stella, Morrie and the family as she went downhill and died peacefully in her nursing home several weeks later.
Comment: The ethics of this case may seem cavalier on my part in that I stumbled on a way to have Morrie agree with me and the rest of the family. But Morrie's decision making ability appeared impaired. I think the "do no harm" ethical principle was the primary driver in this case, but it was anything but textbook.
Stella had aplastic anemia. Her bone marrow could no longer make enough red blood cells to keep her alive. Transfusions, by medical protocol, could not be given in the nursing home. Hence the ambulance to the ER and back to get two units of packed red blood cells every two weeks. But many times poor Stella would start screaming due to the needle sticks, require sedative medications and then wind up getting admitted. It was kind of a medical not so merry-go-round.
This was one of perhaps 10 admissions, but it was the first time she was on my service. I knew Stella and the family and decided to try to get her husband, children, and in-laws together to discuss her end of life wishes. In my own mind, I wasn't sure whether the transfusions were prolonging beneficial life for Stella or making her death prolonged and miserable.
We set aside an hour late one afternoon when everyone could make it to a hospital conference room. My favorite social worker who had been working with the family joined us as did her primary nurse. We reviewed Stella's history and had the family fill in some details actively participating. We allowed time for expression of feelings and "if only's" and wishes. The family seemed together and realistic about her very poor outlook and even poorer quality of life.
Then we discussed options about the transfusions. When we began to talk about the option of hospice and no further transfusions, the husband "Morrie", jumped out of his chair very agitated almost shouting, "This is like Dachau." The room was silent as he stomped out.
The others, though, wanted to keep talking. They noted that Morrie had a diagnosis of early Alzheimer's himself and was needing more care, supervision and guidance. But they honored his opinion and didn't want to do anything he objected to. Stella never completed an advance directive, but the family felt she would never want to continue living in her current state. I suggested that I meet individually with Morrie to discuss the transfusions further.
The next day, I sat down with Morrie. He wasn't agitated and seemed eager to discuss Stella's care. In discussing the ethics of the transfusions, I told him that I feared that the transfusions might actually be harming her. To my great surprise he said, "You know, I agree with you, she might get AIDS!"
With Morrie fixated on the AIDS fear, the family was content with no further transfusions . Hospice was consulted and provided wonderful support to Stella, Morrie and the family as she went downhill and died peacefully in her nursing home several weeks later.
Comment: The ethics of this case may seem cavalier on my part in that I stumbled on a way to have Morrie agree with me and the rest of the family. But Morrie's decision making ability appeared impaired. I think the "do no harm" ethical principle was the primary driver in this case, but it was anything but textbook.
Friday, September 18, 2009
A Letter For My Loved Ones
Death at age 84 can be peaceful and expected or sudden and tragic. Mom's was the latter. She was in the ICU after having an abdominal aortic aneurysm repaired, a pretty major operation in this age group (many of these are now handled by much less invasive techniques). My 87 year old Dad received the call from the hospital. Mom had suffered a cardiac arrest and CPR was ineffective.
When the call was relayed to me I had a whole mix of emotions: the sadness that I wasn't there with her; wondering if she suffered; concerned that her surgeon may not have been the best; and grief for Dad.
I flew back to Pennsylvania for the funeral. The memorial service was given in the beautiful Bryn Athyn Cathedral. The Swedenborgian service was upbeat but didn't deny the sense of loss we all felt. Someone said to me, "We Swedenborgians are among those who cry tears of joy at weddings and laugh though our sadness at funerals as we picture our loved one awakening in the next life."
The burial was a simple affair in the old Bryn Athyn graveyard and a nephew offered to hand carve a headstone. There was respect for the natural body, but nothing elaborate thus accenting the belief that one is very much alive in their much more perfect and youthful spiritual body in the afterlife. The burial site, near the Pennypack Creek where deer roamed, often looked more like a path through the woods than a graveyard.
Dad seemed like he was in a daze. He looked lost and plans needed to be rapidly made for extra care. The hardest thing was going through all of Mom's old papers. We knew she had typed up a family history, sketched out genealogy trees, and collected volumes of papers from all us kids including report cards going back through first grade.
But then we found the letter. It was a sealed envelope with no stamp, which was titled, "In case anything happens to me." We were all so stunned to have this posthumous letter that it took awhile to gather together, sit down, and read it. Basically it was a love letter to Dad, but there we're affectionate references to all of us and our spouses. It felt like Mom talking to us, urging us to love one another, not to chase after worldly possessions, and to be useful human beings. She even chastised herself for nagging us to do more. There was no self praise, no accusations, no regrets - only love.
Such a letter is now called an "Ethical Will." This is a powerful way to leave a positive legacy of your thoughts and values. I encourage patients to consider reading about ethical wills when doing end of life planning so that more of us can receive a love letter from beyond like the one Mom left.
When the call was relayed to me I had a whole mix of emotions: the sadness that I wasn't there with her; wondering if she suffered; concerned that her surgeon may not have been the best; and grief for Dad.
I flew back to Pennsylvania for the funeral. The memorial service was given in the beautiful Bryn Athyn Cathedral. The Swedenborgian service was upbeat but didn't deny the sense of loss we all felt. Someone said to me, "We Swedenborgians are among those who cry tears of joy at weddings and laugh though our sadness at funerals as we picture our loved one awakening in the next life."
The burial was a simple affair in the old Bryn Athyn graveyard and a nephew offered to hand carve a headstone. There was respect for the natural body, but nothing elaborate thus accenting the belief that one is very much alive in their much more perfect and youthful spiritual body in the afterlife. The burial site, near the Pennypack Creek where deer roamed, often looked more like a path through the woods than a graveyard.
Dad seemed like he was in a daze. He looked lost and plans needed to be rapidly made for extra care. The hardest thing was going through all of Mom's old papers. We knew she had typed up a family history, sketched out genealogy trees, and collected volumes of papers from all us kids including report cards going back through first grade.
But then we found the letter. It was a sealed envelope with no stamp, which was titled, "In case anything happens to me." We were all so stunned to have this posthumous letter that it took awhile to gather together, sit down, and read it. Basically it was a love letter to Dad, but there we're affectionate references to all of us and our spouses. It felt like Mom talking to us, urging us to love one another, not to chase after worldly possessions, and to be useful human beings. She even chastised herself for nagging us to do more. There was no self praise, no accusations, no regrets - only love.
Such a letter is now called an "Ethical Will." This is a powerful way to leave a positive legacy of your thoughts and values. I encourage patients to consider reading about ethical wills when doing end of life planning so that more of us can receive a love letter from beyond like the one Mom left.
Wednesday, September 16, 2009
Moral Distress in the ICU
"Doctor, the patient in room 8 is ready to go to heaven, but no one really seems to understand that but the nurses. Could you please talk to the family?" When I would come on service in the ICU it was not uncommon for the nurses to feel a mixture of frustration, sadness and at times moral outrage at the prolonged care of a terminal patient. The cost of the care really wasn't their issue. The nurse had spent hours at the bedside doing total body care; consoled the distressed family; listened warily to the various specialists who wanted to push on with a treatment like dialysis in a 90 year old patient; tried to titrate pain medications for comfort without oversedation; and extensively documented all information in the patient's medical record.
With a social worker, we developed a methodology of family conferences that basically operates like a mini-ethics committee. The goal is to give information, listen, validate concerns, gain trust, explain options with benefits and burdens, then try to match this with the patient's wishes if known. We had done this many many times, so I would joke with the nurses typical of the dark humor in stress medicine, "Well, let me put on my black cape and let's make rounds before we meet up with the family."
R.N. Theresa Brown's essay in the New York Times points out the devastating effect of prolonged futile care on nurses in the ICU. Also, I think there is likely undocumented similar distress among doctors and other care gives like social workers. Many critical care doctors retire early, move laterally into sleep medicine, or move into being a concierge doctor. The burnout surfaces in a number of ways. I know of one doctor who divorced his first wife to marry an ICU nurse, divorced her later to marry a second ICU nurse and then left ICU work for a limited low stress practice.
The social worker in our ICU would hold frequent debriefings with the staff and try to be helpful for the mental anguish that occurs particularly in the situation of medical futility where a dysfunctional family is involved with poor decision making skills at times magnified by alcohol or drug abuse. These are the really tough situations.
There is finally more attention, training, and research being done on how to deal with the issue of medical futility, but those at the bedside will have to endure the realities, stresses, and moral suffering. Hopefully, medical and nursing training and communication will continue to improve in this area - and lessen moral distress.
With a social worker, we developed a methodology of family conferences that basically operates like a mini-ethics committee. The goal is to give information, listen, validate concerns, gain trust, explain options with benefits and burdens, then try to match this with the patient's wishes if known. We had done this many many times, so I would joke with the nurses typical of the dark humor in stress medicine, "Well, let me put on my black cape and let's make rounds before we meet up with the family."
R.N. Theresa Brown's essay in the New York Times points out the devastating effect of prolonged futile care on nurses in the ICU. Also, I think there is likely undocumented similar distress among doctors and other care gives like social workers. Many critical care doctors retire early, move laterally into sleep medicine, or move into being a concierge doctor. The burnout surfaces in a number of ways. I know of one doctor who divorced his first wife to marry an ICU nurse, divorced her later to marry a second ICU nurse and then left ICU work for a limited low stress practice.
The social worker in our ICU would hold frequent debriefings with the staff and try to be helpful for the mental anguish that occurs particularly in the situation of medical futility where a dysfunctional family is involved with poor decision making skills at times magnified by alcohol or drug abuse. These are the really tough situations.
There is finally more attention, training, and research being done on how to deal with the issue of medical futility, but those at the bedside will have to endure the realities, stresses, and moral suffering. Hopefully, medical and nursing training and communication will continue to improve in this area - and lessen moral distress.
Monday, September 14, 2009
Do everything?
The room was darkened, the parents distraught, and the social worker was there as I knocked on the door of room 202 on the medical ward. My pager had buzzed me early that Sunday morning when I was on call for Pulmonary consults. The Internist asked me to see a 13 year old boy I'll call Mike who was dying. The abbreviated history was that of a previously healthy youngster who had a widespread metastatic osteosarcoma of the femur. The X-Ray showed multiple masses throughout both lungs. He was struggling to breathe even with an oxygen mask.
The amazing part of the story is that Mike had never been treated. There were potentially curative treatments which can involve chemotherapy and amputation. The parent's firm belief was that he could be healed by prayer and, not surprisingly, Mike went along. I must admit that I wasn't very happy about this consult because it seemed like there was nothing I could do and that I was just an impotent adjunct to a sad frustrating story.
Apparently early on, the medical team had tried to get a court order for treatment or at least have a legal guardian appointed who could be more of an advocate for appropriate medical treatment. None of this had been timely enough to prevent Mike's current rapidly downhill course.
He was thin, emaciated and pale. He gave me a weak smile and said that his main concern was trouble breathing. The lung exam showed abnormal crackling sounds and the heart rate was fast at 130 with a thready pulse. His pain was being well treated with narcotics. A respiratory therapist was making frequent visits trying aerosols with limited benefit.
As I began to talk about options for treatment for his breathing, I soon found out that no one had discussed the "code status" with Mike or the family. In other words, if Mike's breathing stopped or the heart beat ceased, would we do CPR? This was in 1974 before we had hospital ethics committees or talked about terms like futility. But it seemed clear to me that it made no sense to even offer CPR or a ventilator in the ICU in Mike's case. But the question was how to broach this with Mike and the family.
The social worker, nurse, respiratory therapist, parents and I met in the conference room nearby Mike's room. After introductions, I reviewed the medical facts and let them know that I thought Mike's remaining time was very limited perhaps hours to days. The parents didn't seem surprised. They had seen Mike go downhill but were still praying and hoping for a miracle. Then I talked about options and the notion of a ventilator came up. I was pretty candid with them that a breathing tube and standard mechanical ventilator would have potential harms in terms of suffering. Then the respiratory therapy had a suggestion for help, "Doctor, how about the Bird Respirator to support his breathing. This turned out to be a wonderful compromise. The family and Mike did not feel abandoned, the Bird Respirator was relatively low tech and did not require transfer to the ICU. A mask could be used for both this and the oxygen. Now days, this would be called non-invasive ventilation. The brilliant inventor, Dr. Forrest Bird who had helped save so many lives during the polio epidemics had given us the technology to help with palliative care for Mike.
Several hours later, Mike with Bird Respirator attached passed away comfortably. The parents felt that everything had been done and we're so grateful that no one chastised them on their belief in faith healing.
I did not offer transfer to the ICU or CPR. Medical futility is often difficult to define except in fairly extreme situations, and is debated often in the modern ICU, by ethics committees, and legal scholars.
When I discussed this case later with a colleague, he said "Sometimes you need to be an advocate for basically doing no harm while you're trying to relieve symptoms. You were doing the duty of a doctor."
The amazing part of the story is that Mike had never been treated. There were potentially curative treatments which can involve chemotherapy and amputation. The parent's firm belief was that he could be healed by prayer and, not surprisingly, Mike went along. I must admit that I wasn't very happy about this consult because it seemed like there was nothing I could do and that I was just an impotent adjunct to a sad frustrating story.
Apparently early on, the medical team had tried to get a court order for treatment or at least have a legal guardian appointed who could be more of an advocate for appropriate medical treatment. None of this had been timely enough to prevent Mike's current rapidly downhill course.
He was thin, emaciated and pale. He gave me a weak smile and said that his main concern was trouble breathing. The lung exam showed abnormal crackling sounds and the heart rate was fast at 130 with a thready pulse. His pain was being well treated with narcotics. A respiratory therapist was making frequent visits trying aerosols with limited benefit.
As I began to talk about options for treatment for his breathing, I soon found out that no one had discussed the "code status" with Mike or the family. In other words, if Mike's breathing stopped or the heart beat ceased, would we do CPR? This was in 1974 before we had hospital ethics committees or talked about terms like futility. But it seemed clear to me that it made no sense to even offer CPR or a ventilator in the ICU in Mike's case. But the question was how to broach this with Mike and the family.
The social worker, nurse, respiratory therapist, parents and I met in the conference room nearby Mike's room. After introductions, I reviewed the medical facts and let them know that I thought Mike's remaining time was very limited perhaps hours to days. The parents didn't seem surprised. They had seen Mike go downhill but were still praying and hoping for a miracle. Then I talked about options and the notion of a ventilator came up. I was pretty candid with them that a breathing tube and standard mechanical ventilator would have potential harms in terms of suffering. Then the respiratory therapy had a suggestion for help, "Doctor, how about the Bird Respirator to support his breathing. This turned out to be a wonderful compromise. The family and Mike did not feel abandoned, the Bird Respirator was relatively low tech and did not require transfer to the ICU. A mask could be used for both this and the oxygen. Now days, this would be called non-invasive ventilation. The brilliant inventor, Dr. Forrest Bird who had helped save so many lives during the polio epidemics had given us the technology to help with palliative care for Mike.
Several hours later, Mike with Bird Respirator attached passed away comfortably. The parents felt that everything had been done and we're so grateful that no one chastised them on their belief in faith healing.
I did not offer transfer to the ICU or CPR. Medical futility is often difficult to define except in fairly extreme situations, and is debated often in the modern ICU, by ethics committees, and legal scholars.
When I discussed this case later with a colleague, he said "Sometimes you need to be an advocate for basically doing no harm while you're trying to relieve symptoms. You were doing the duty of a doctor."
Thursday, September 10, 2009
So What's a POLST Form?
A patient I'll call Mary had terminal cancer and had completed her advance directive and had her daughter as her Power of Attorney for Health Care. She didn't want to be resuscitated if her breathing or heart stopped. Hospice was to visit her later in the week, likely to get her enrolled. A wrist band was available in those years saying "DNR" but Mary didn't know about it yet.
A neighbor friend was able to stay with Mary to allow her daughter out for a while to do some shopping and to get her hair done. The neighbor really loved Mary but didn't know what to do when Mary suddenly stopped breathing and slumped over. So 911 was called and within 3 minutes the Medic One team arrived full tilt. They couldn't get medical information from the neighbor other than, "I think she has a bad cancer."
Medic One is trained to rapidly assess and treat unless it's very clear not to intervene. Thus they rapidly diagnosed ventricular fibrillation, started CPR and applied cardioversion electrical shocks. The daughter arrived on the scene and screamed at them that her mother was dying and didn't want this. By this time, the heart had restarted and an endotracheal tube was in place. Mary was unconscious and taken to the ER at the hospital when I was on call.
The ER doc called me and said, "Jim, this is a bad situation. We have the documentation now from the daughter that the patient didn't want CPR and she's mad at Medics who were only doing their job." There were no other family members and the daughter had decision authority. The medical records were quickly reviewed (all electronic) so we had the confirmatory notes from her oncologist. There was no doubt she was terminal. Mary was allowed to die in the ER. All involved were saddened by how "the system" had failed.
In subsequent years, the POLST (Physician Orders for Life Sustaining Treatment) was implemented in Washington State. It's also in California, Oregon and a few eastern states and under development in a number of others. Basically this form takes your wishes, puts them into specific medical orders, and it is signed by you (or your surrogate) and your medical provider. The form is large, bright colored and easy to spot on a bedroom door. It can say treat or don't treat taking on such things as CPR, fluids, nutrition, palliative pain management, etc. The beauty of this form is that it is patient centered, not institution centered. It is thus honored by Emergency Rooms, Medic One, Hospitals, and Nursing Facilities.
The POLST form is really for the seriously ill or very elderly who are sure what they would or wouldn't want in terms of medical intervention. It's certainly appropriate for all Hospice patients. One lady told me that she had three of these forms posted up around her house. This 88 year old woman said, "I don't want some stranger pounding on my chest when I die."
For more information about the POLST form, please see www.POLST.org
A neighbor friend was able to stay with Mary to allow her daughter out for a while to do some shopping and to get her hair done. The neighbor really loved Mary but didn't know what to do when Mary suddenly stopped breathing and slumped over. So 911 was called and within 3 minutes the Medic One team arrived full tilt. They couldn't get medical information from the neighbor other than, "I think she has a bad cancer."
Medic One is trained to rapidly assess and treat unless it's very clear not to intervene. Thus they rapidly diagnosed ventricular fibrillation, started CPR and applied cardioversion electrical shocks. The daughter arrived on the scene and screamed at them that her mother was dying and didn't want this. By this time, the heart had restarted and an endotracheal tube was in place. Mary was unconscious and taken to the ER at the hospital when I was on call.
The ER doc called me and said, "Jim, this is a bad situation. We have the documentation now from the daughter that the patient didn't want CPR and she's mad at Medics who were only doing their job." There were no other family members and the daughter had decision authority. The medical records were quickly reviewed (all electronic) so we had the confirmatory notes from her oncologist. There was no doubt she was terminal. Mary was allowed to die in the ER. All involved were saddened by how "the system" had failed.
In subsequent years, the POLST (Physician Orders for Life Sustaining Treatment) was implemented in Washington State. It's also in California, Oregon and a few eastern states and under development in a number of others. Basically this form takes your wishes, puts them into specific medical orders, and it is signed by you (or your surrogate) and your medical provider. The form is large, bright colored and easy to spot on a bedroom door. It can say treat or don't treat taking on such things as CPR, fluids, nutrition, palliative pain management, etc. The beauty of this form is that it is patient centered, not institution centered. It is thus honored by Emergency Rooms, Medic One, Hospitals, and Nursing Facilities.
The POLST form is really for the seriously ill or very elderly who are sure what they would or wouldn't want in terms of medical intervention. It's certainly appropriate for all Hospice patients. One lady told me that she had three of these forms posted up around her house. This 88 year old woman said, "I don't want some stranger pounding on my chest when I die."
For more information about the POLST form, please see www.POLST.org
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