Friday, April 30, 2010

Help at the End - the Reality

At the University Hospital in Madison Wisconsin in 1938, a patient was dying from a very painful bone cancer which had produced fractures. The young interns knew that more morphine injections were needed but they feared they might be blamed for giving a lethal dose. So a tacit agreement was reached. Every hour or so,one of them would come into the patient's room and give a shot of morphine. This was rotated between four or five of doctors so no one really knew who gave the final dose. My father told me this story before he died. He was one of the interns - and he felt strongly that they had taken the right action in a moral sense.

In 1980, I saw a patient I'll call Sam with a malignancy of the lining of his lungs. It was related to working around asbestos in the shipyards during World War II. The asbestos would come in bags which they dumped into barrels, added water, then applied the paste to steam pipes in the holds of ships for insulation. They were covered with asbestos dust by the end of the day - dust similar to the spray used for fire protection on the steel girders in the high rises of downtown Seattle where the white clouds of asbestos settled onto the city streets during construction. Several of Sam's co-workers had already died of the asbestos related cancer - mesothelioma.

Surgery was unsuccessful in that all Sam's tumor couldn't be removed. Fluid kept building up in his chest and he was progressively short of breath to the point of gasping and not being able to lie flat. I could tap some fluid giving temporary relief and even tried to scar down the area using a talc solution without much success. Sam would come in with his wife Helen feeling more discouraged and depressed. Over time he began asking for frequent refills on his sleeping pills along with more narcotics. I felt he was likely planning to take a lethal overdose of these medications I was prescribing which, of course, was against Washington State law at the time - and continues to be against the law in 47 other states.

"Sam, are you planning to take a large dose at the end?"

"I don't know doctor, but I want to be able to decide when things are no longer tolerable."

Since I was a member of the hospital ethics committee, I decided to present Sam's case to the group. These discussions are helpful and advisory. The recommendations are not the feared "Death Panels" being referred to in political debate. Ethics Committees have the benefit of broad representation: nurses, doctors, social workers, clergy, consumers, pharmacists, and many others. We had an intense and lively discussion. This was in the days before Dr. Kevorkian, before Hospice, and before any state had a "Death with Dignity" law. After much debate, the consensus of the committee was that ethically Sam had the right to self-determination and to end his life when the suffering was too great (assuming that he was mentally clear and competent). The committee acknowledged, however, that physician assisted suicide is against the law.

I saw Sam several more times, each time he was worsening. Two weeks later, I got a call that he had died at home. The death certificate was delivered to my office the next day. Cause of death assigned by me: Mesothelioma - his cancer.

I called Helen a few weeks later with my condolences and asked her if she'd be willing to come in and discuss Sam's dying with the Ethics Committee. She rather hurriedly replied, "No way," an answer that I kind of expected.

There are now more options are available at the time of death to help patients avoid or ameliorate severe pain or severe shortness of breath - conditions that are not at all uncommon at the end of life.

Modern Hospice care is now widely available in the USA and is a covered Medicare benefit. The benefit commonly adds increased coverage of medications, equipment, nursing visits, spiritual care, etc. during the last six months of life. Some health plans offer Hospice for terminally ill patients under 65 as well. Hospice, for unclear reasons tends to be underutilized with patients being referred there often only a few days before death.

Although Hospice is constantly improving, three states (Oregon, Washington, and Montana) allow "Death with Dignity" - basically allowing physicians to prescribe lethal doses of a barbiturate in specific situations. The Wall Street Journal, discusses Washington's I-1000 Initiative which passed with a 59% voter approval rate in November of 2008.

Oregon's similar "Death with Dignity Law" has been in effect for over a decade. In an Oregon State report, "During 2009, 95 prescriptions for lethal medications were written under the provisions of the DWDA compared to 88 during 2008. Of these, 53 patients took the medications, 30 died of their underlying illness, and 12 were alive at the end of 2009. In addition, six patients with earlier prescriptions died from taking the medications, resulting in a total of 59 DWDA deaths during 2009. This corresponds to an estimated 19.3 DWDA deaths per 10,000 total deaths." So for every 500 natural deaths, there is one DWD death.

So far, many of the worrisome concerns about the law have not come to pass: such as abuse of the weakened elderly; abuse of the handicapped or mentally ill; expanding the criteria for qualifying patients; substituted judgment; etc. I still do read and hear worrisome comments though like the following: "It's too bad we can't just give the medication through his feeding tube; he's a vegetable costing society and his family so much of their resources; she can't speak for herself now, but I know she would want to receive the drugs - just like her beloved dog did; although he does have more than six months to live he should have the right to go anytime he wants."

There are likely going to be organized attempts to broaden the criteria for assisted suicide (DWD) in coming years by election initiatives and court rulings. the issue is far from settled. It is unknown whether the ratio of 1 DWD death to 500 natural deaths will remain stable.

There's a controversial organization called Dignitas in Switzerland promoting Suicide Tourism, see March 2010 Atlantic Monthly. Also Frontline, a documentary show on PBS has a well done video of an American traveling to Switzerland specifically to commit suicide. Switzerland allows non-residents to receive physician assisted suicide. Other European countries like the Netherlands, Belgium and Luxembourg allow physician assisted suicide only for residents.

The unfortunate patient, Craig Ewert, had severe ALS, was losing muscle function and needed the support of a breathing machine. He wanted to be in control and did not want to suffer at the end. It was clear he would prefer to live but saw no hope for the future.

In my practice in Pulmonary and Critical Care Medicine I cared for many patients with ALS at the end. With the aid of hospice and aggressive palliative care with the intent of relieving pain and terrible shortness of breath, a patient like Mr. Ewert can receive care at home with the loved ones nearby. This type of death does not apply the "Death With Dignity" Washington law of a self-administered intentional lethal drug. It would mean giving small doses of morphine and/or midazolam (a sedative), removing the ventilator support, and giving enough medication to relieve symptoms. The intent is to relieve suffering and to adhere to the patient's wishes. Yes, the life ends but it is not a suicide, the loved ones are nearby, and the patient's wishes are met.

With the advent of care like this, we are seeing more terminal patients being referred to hospice, fewer hospital deaths, and more comfort for the patient and loved ones.

The DWD law in Washington, Oregon, and Montana does remain an option. But with good hospice care and good communication, the use of terminal lethal overdoses will remain at a minimum. The law has actually made the medical and nursing profession step up and provide more knowledge, more research, and more care focused on the end of life.

Saturday, April 24, 2010

One More Trip to Guam

Marie is too young to have a fatal diagnosis. She has Primary Pulmonary Hypertension. This condition is called "Primary" because we have no idea of the cause. Medical lingo has a variety of ways of labeling unknown causes such as "Idiopathic" or "Essential", but in Marie's case, it's "Primary" - as if that label somehow shows some understanding.

Actually, I do understand that this is a devastating diagnosis which tends to affect adult women about three times as often as men.

Her family physician sends her to me for puzzling shortness of breath. Marie is a delightful soft spoken woman of Asian descent, born in Guam but moving to the USA many years ago. She has raised three children, been healthy, and helps out in her husbands business as a bookkeeper. She has a beautiful smile and tends to downplay her symptoms.

A non-smoker, her lung functions are normal, but she has some swelling of her ankles. Her heart tones are normal except for a split second heart sound, a sign of delayed closure of the valve leading from the heart to the lungs - the pulmonic valve. The EKG shows strain in the right ventricle. All this points to possible pulmonary hypertension which is confirmed later by heart catheterization and cardiac ultrasound.

We rule out things like fen-phen or blood clots and begin some drug treatment to try to dilate the vessels going to her lungs. Essentially all the blood returning from the body needs to be pumped out to the lungs where it gives off carbon dioxide and picks up oxygen. It's normally a low pressure system, but not in Marie's case.

Over the next few years she begins to fail. Other drugs are tried even a battery powered continuous IV. Oxygen is now needed. Marie somehow arranges an annual trip to Guam, her birthplace where many relatives still reside. Between office visits, she hardly ever calls and we have to reach out to see what's going on.

"Marie, how are you doing?"

"Oh, just fine. A little limited but I can't complain."

I have her come in. There's no doubt things are worsening and that more drastic measures need to be considered.

"Marie, we need to have a talk about next steps. Your cardiac echo is showing very high pulmonary artery pressure. This is becoming life threatening. The drugs are no longer working well. I'd like to refer you to the University Hospital to consider the possibility of lung transplantation."

"Oh, doctor. I'd never want anything like that."

"Why not?"

"Well you see, I'm at peace with God. What will be will be. I don't expect any miracles. Surgery seems so risky to me. I think I'd rather just go on."

I ask Marie to bring in her husband Gerald who is hardly ever in the exam room with her. I want to make sure he and the children understand what the situation is. She smiles at him when I bring up lung transplantation. Gerald smiles back at her and doesn't show frustration, "Look doctor, we've already talked about this. She doesn't want surgery. She knows her time is short, and we're flying back to Guam next week for a month's visit."

After more conversation, I begin to understand that they are further along in accepting her impending death than I am. They are Catholic, having a strong faith along with a kind of fatalism that I don't often see in my practice. They have accepted her destiny, while I'm still ready to fight on!

I OK the oxygen use on the airline and they have arranged for oxygen in Guam. During that month I receive a postcard basically saying, "Don't worry, I'm OK."

But on return to Seattle, Marie is worse. She can no longer walk across the room, has episodes of severe shortness of breath, and is becoming bed-bound. Marie and Gerald agree to a hospice referral. Hospice steps in with their usual grace and provides amazing support to Marie and the family.

From that point on I receive mainly electronic progress reports from the hospice nurses and an occasional call for medications. Small doses of palliative medications are keeping her comfortable.

Then the hospice nurse calls me, "Doctor deMaine, we're wondering if you could visit Marie at home. She and the family would really like to see you."

I don't know what to expect when I leave the office at 6PM to stop by their Bellevue home. The house is in a pleasant well groomed neighborhood. A child shyly answers the door and calls for her Grandpa, Gerald. The scene surprisingly seems festive to me. Food abounds on the large dining room table, music is playing, and kids are running around playing games. The living room has been transformed into a bed room. There in the middle of it all is Marie. Her hospital bed's head is propped up a bit so she can see. A sleepy smile appears on her face when she sees me.

"Why don't you get something to eat doctor, you must be tired and hungry."

I sit with her for awhile, listen to her chest with my stethoscope and hold her hand. The warmth and love surrounding her and her family is palpable. I feel tremendous respect for her emotional strength.

Within a week Marie is gone from this life. She has left a beautiful legacy of love and acceptance of death - a blessing for her family, and me too. I come away with the hope that I can some day face my own death with such equanimity, and that I can have my loved ones close by.

Thursday, April 15, 2010

A Call to Jerusalem

I'm not at all sure what is going on and that's not a very comfortable spot for a doctor to be in. The call from the ER doctor tells me that he's admitting a very sick Boeing engineer to the intensive care unit. Abdul Yasu (not his real name) has been in normal health, until he had sudden onset of stabbing left chest pain and violent coughing this morning. This was followed by sweats, a fever to 104, and trouble breathing. His blood pressure is thready and he is wheezing.

The strange thing is that I know Abdul. He's a neighbor living just a few houses away and our kids have gone to school together. A brilliant aeronautical engineer with an equally brilliant wife mathematician Maryam, they immigrated from northern Galilee about 30 years ago. They were Christian Palestinians looking for a better life for their children. Boeing and Seattle have been their secular savior. Abdul has explained to me that his name in Arabic means "servant of Jesus" - a name he is proud of. He last visited his native land three years ago.

Abdul gives me a weak smile when he sees me walk into his ICU room. The cardiac and oxygen monitors are already in place and he's receiving an aerosol treatment for his wheezing: "Praise God that you're here to see me Dr. deMaine. I'm very sick."

That is not news to me! Maryam is at the bedside, very worried and their son who works at nearby Microsoft is on the way over.

Trying to be methodical and not miss anything obvious, I try to get more history. Any recent colds? Any unusual exposure to fumes, sprays or toxins? Any allergy history? Any history of heart or lung disease or smoking? Any history of HIV exposure (this important question is always hard to ask in front of family)? Tuberculosis history? Any friends or family ill? Any new medications or change in medications. Any new health food or alternative medications?

The answers were all to the negative. His list of chronic medications is very short. A diuretic for blood pressure, a multivitamin, and a baby aspirin. That is it. He's not taking any over-the-counter or herbal medications.

About this time the chest X-Ray arrives and I'm very concerned. There's a huge 10 cm cavity in the middle of the left lung which has very strange characteristics. Usually a cancer will be thick walled and irregular. Usually TB is also thick walled with a dense area of infection around it in the upper part of the lung. Abdul's large cavity (basically a hole) in the left lung is very thin walled and has some fluid gathered in the bottom - much like a cup holding water.

Looking further there is a possible second spot in the other lung, about 2 cm in diameter - something we would call a "coin lesion" in medical descriptive talk. This adds to my worry. An old X-Ray is located from two years ago that's entirely normal.

The exam doesn't add much to my knowledge base. There are no enlarged lymph nodes or skin lesions. The throat is clear. The lungs reveal diffuse raspy wheezing. He's not coughing up anything for testing, specifically no blood or off colored sputum. The heart is regular but fast at 120. The abdomen is benign. Orders are written for cytology (cancer check), and for multiple cultures - routine, TB, and fungus.

The blood work begins to return. The main remarkable feature is in the white blood count. This is very elevated with lots of eosinophils. These are the kinds of cells containing red-stained granules that we commonly associate with an allergic reaction. His count is 24% when it would normally be 0-2%. Thankfully the kidney function, liver function, and blood sugar are all normal.

All this was very puzzling. What could cause an sudden allergic-type reaction and a new lung cavity? I begin to think I might have an answer but I need a quick trip upstairs to the medical library. There are a number of syndromes involving eosinophils and the lungs, but in Abdul's case the acute dramatic onset of symptoms suggest a rare diagnosis - a pulmonary hydatid cyst which has acutely ruptured and produced his critical status.

I haven't seen a patient like this for 30 years. My current knowledge of what's called tropical medicine is very rusty. Fortunately in the 1960's I had a great teacher named Harold Brown. He was a Professor of Tropical Medicine at Columbia's School of Medicine and the author of a definitive medical textbook about parasites. The good doctor taught me about intestinal parasites at the CDC in my preparation to care for Peace Corps Volunteers in Afghanistan. Affectionately known as "Stoolie Brown", he made the parasitic intestinal diseases come alive.

Hydatid disase starts as a worm in a domestic or wild dog's intestine. The eggs are shed into the dog feces which often litter the pastures where sheep graze. The unwitting sheep (or an occasion human) ingests contaminated vegetation. The eggs hatch in the new host and penetrate into the liver (or lungs) where they form cysts. The cycle is completed when other uninfected dogs feed on the liver or lung cysts and develop intestinal worms. Humans in sheep raising countries are "innocent bystanders" becoming infected when the salads they eat are contaminated.

But does Abdul really have Hydatid Cysts in his lungs? We're taught as students to first look for uncommon presentations of common diseases, so I still need to rule out cancer, tuberculosis, etc. Abdul agrees to a bronchoscopy, CT scan of the chest and abdomen, and more blood work - specifically a serology for echinococcus (the medical names for hydatid cysts). The CT scan shows no cysts in the liver and demonstrates the large air and fluid filled cavity within the left lung. This is a 2.4 cm small low density (water density) rounded lesion at the base of the right lung.

He is so sick, I did the bronchoscopy at the bedside. With mild sedation and lidocaine aerosols, I slide the bronchoscope through the left nostril and follow its course on the video screen. The vocal cords are healthy and move well, The trachea and bronchial passages look normal, much like one is gazing up a hollow tree trunk. I do a saline lavage of 100cc's in order to get fluid from the affected area of the left lung. Then I do a biopsy of the mucous membranes nearby. I decide not to try to get into the cavity of the lesion which might induce more havoc.

By the next day, he's feeling much better. The biopsy and lavage are all negative except for the presence of eosinophils. I walk over the the radiology department to review the CT scan with my favorite radiologist. She notices that both on the chest x-ray and CT scan that there isn't just fluid at the bottom of the cyst - there's what she calls the "Water Lilly sign" - crumpled cyst wall at the bottom. She pulls out the CT text books which confirm the suspicions.

All this is beginning to finally make sense. The thin walled cyst acutely ruptured on the day of admission, spilling it's liquid product into the patients lung airways. He had an anaphylactic-type reaction, which can be fatal to some persons - so Abdul is fortunate to survive.

The following day the blood serology confirms a very high level of antibodies to echinococcus, the causative organism. False positives can occur but given the clinical presentation I'm sure I finally have a diagnosis.

But what should be done? I have no experience here, despite doing an Infectious Disease Fellowship years ago. So I pick up the phone and make several calls; to the CDC, and several medical schools with expertise in tropical medicine. The consensus was to begin treatment with a drug called Albendazole, but the big downside was that it provided a cure in only 30% of the patients. Surgery was an added option.

I discussed this with Abdul and Maryam. Their immediate response was, "You must call Maryam's brother in Jerusalem." He is a thoracic surgeon at Hadassah Hospital and must see a lot of this disease.

Dr. Nassir is just back from additional training at the University of Pennsylvania and was most helpful. After hearing the story, he explains that Hydatid Cysts are endemic in northern Galilee and a relative common reason for lung surgery there. He is definite, "It must come out."

Fortunately, my thoracic surgery consultant has worked abroad and is fearless in tackling a case like this. Abdul and the family feel comfortable going ahead and removing the cyst, which means about a third of the left lung. The operation itself doesn't take place for about two months, waiting for the Albendazole drug treatment to kick in and hopefully sterilize the infection so surgery wouldn't spread it to new sites.

The surgery goes well and Abdul makes an uneventful recovery. The Albendazole is stopped after about 18 months. Over the next five years, we follow his chest x-rays and with an occasional CT scan. The remaining right lung spot doesn't disappear, so it is removed with thoracoscopic surgery. It indeed is a small hydatid cyst but sterile and would not have caused problems.

His "near death" experience no doubt affects him and perhaps makes him even closer to his religious faith than before. Beyond that, he's very proud to be an American and considers himself most fortunate - and I think we'd agree.

Comment: A case such as this never leaves me. I feel fortunate to have spent two years in Afghanistan and a year in Saudi Arabia practicing medicine. With modern travel, we can see diseases such as malaria, worms, etc arriving back here where we are very unfamiliar with the diagnosis and treatment. With travel medicine clinics and referral areas of expertise like the CDC we can get the backup we need - if we ask the right questions and make the right calls. This one to Jerusalem certainly helped my patient - and me.

I did present this case at a local chest conference as an unknown - and of course didn't mention the patient's name. The Pulmonary Fellow really struggled with the presentation and couldn't come up with a diagnosis: the reason being that he forgot to ask about "Travel History". Once it was clear that the patient had lived and traveled in the middle east, the diagnosis wasn't so hard. It reminds me that our lives and medical care are really accidents of zip codes - a lottery over which we have limited control. But Abdul managed to win the lottery. His father had told him the streets of America are paved with gold. Abdul tells me this and smiles, "And you know they really are!"


Wednesday, April 14, 2010

Dying Wishes at Lunch

Larry surprises me during a visit to my pulmonary clinic in 1983. “Doc, I want to take you out to lunch. There’s something I want to discuss with you.”

I am a little nervous about the invitation coming from my patient, because he is a super salesman, very nice but a take-charge type of guy. I’m concerned he might to try to sell me something - and in a way he is. He's a favorite of mine coming across as a bit crusty but a straight shooter.

Larry has severe COPD (Chronic Obstructive Pulmonary Disease) and is in a downward spiral. He always appears well groomed and has a piercing gaze which acquires a twinkle when he cracks one of his frequent jokes. But Larry was serious this time. He’s just been discharged from the hospital after another of several flare-ups with severe wheezing, gasping and coughing due to infection.

His waterfront home on Vashon Island where he lives alone at age 77 is becoming a prison to him: “Doc, I can’t handle the stairs, go crabbing, or even lean over to dig clams. This is the pits.”

“Larry, how about hiring someone in or moving over to Seattle to be nearer your family and medical care”

“No way, I don’t want to move and bother my sons or have some stranger in my home!”

On examining Larry, I can see the distended neck veins and the barrel shaped chest. It is apparent that the lungs were over expanded and the diaphragms flattened and moving poorly. There is a trace of swelling in his legs. The blood gases now show an elevation in his carbon dioxide. He can’t breathe sufficiently to either maintain oxygen or get rid of the CO2. Chronic respiratory failure due to chronic tobacco abuse is his long standing diagnosis. He finally kicked the habit 5 years earlier which helped some but not enough. He hates the oxygen tubes and prednisone side effects. He now has the “moon face”, bruising of the arms, muscle wasting, and weakness – all the scourge of chronic prednisone use.

A few weeks after his request I arrange to meet Larry at a restaurant nearby the hospital. After some pleasantries, Larry lets he know that he wants to talk about dying: “Look, I’ve lived a long time and what I’m doing now isn’t really living. These flare-ups are torture, I feel like a fish out of water and I don’t want to die that way. My biggest fear is suffocating to death.”

We talk about ventilators to support breathing, “No”; ICU care with aggressive support, “No”. Larry is clear; he wants to be in control. “Look Doc, all I want you to do is promise me that you’ll help me at the end”.

I continue to listen as he explained his feelings and fears. He doesn’t appear significantly depressed but I need to check. “Larry, do you feel sad or depressed?” He replied, “No, just mad as hell that I can’t get better.” Actually, I guess that Larry had very natural “situational depression” from his illness and I suggest a low dose antidepressant, but he refuses - perhaps avoiding some unpleasant medication side effects.

So we talk options for what would now be called aggressive palliative care. “Larry, look I’m not Dr. Kevorkian but there are options. Other than the meds and oxygen you are using to help breathing, the best drug at the end is morphine. This drug takes away the suffocating feeling, treats any pain, sedates you and produces euphoria.”

“Well doc, that’s what I want”. I reply, “Larry there’s a significant catch, it would likely speed up your death by several hours or even a few days. If the intent is to relieve suffering in a terminal patient, drugs like morphine are acceptable even it might hasten death.” Larry responded, “Look, I just want to die comfortably. I know I’m dying so what’s a few hours or days in my condition.”

Later I discuss this with a few of my colleagues and got mixed responses. One says, “There are situations that you just can’t jump into. This is too close to assisted suicide.” Another replies, “The patient should have the right to ask for help from suffering. After all, since you can’t cure him you are at least obligated to relieve his intolerable symptoms.” A Swedenborgian scholar friend of mine has a broad view, “Everything in the Lord’s Providence has a reason and the Lord is always trying to bend bad toward good. Your patient is suffering and you have tools to help him. I don’t think it wise to abandon him in his need. He will be transitioning from this life to the next soon. Why needless suffering?”

Larry and I make a tentative agreement to comply with his wishes at a future date when another inevitable severe flare-up would occur, but I tell Larry that he needs to discuss his wishes and hopefully get buy-in from his two sons, one an attorney and the other a veterinarian. A week later I confer with Larry and his sons who are in agreement with their dad, and then we wait.

In the dark Seattle Christmas season, my pulmonary practice always seems busiest. Pneumonias are at a peak, new lung cancers are being discovered, and the sad stories seem relentless. My anger at the tobacco companies flares. It seems like a losing battle seeing the continuing ravages of tobacco abuse. But my spirits are buoyed by a recent significant skirmish that we won. (Smoking was finally banned at my hospital in 1983. Prior to that, doctors smoked while making rounds and families smoked in patient rooms. When I was chair of the Smoking Advisory Committee of the American Lung Association of Washington, we surveyed all of the hospitals in the state and found that only a few had a policy and none had completely banned smoking. Now, of course, smoking in any public place is banned.)

At dinner two days before Christmas, I am called by the ER doctor. Larry is there. Shortly thereafter at the bedside I see that Larry looks awful, but is able to give me that piercing look and says in a rasping voice, “Remember what you promised.” So I once more review the plan and he nodded. Normally he would go to the intensive care unit, but tonight we bypass the ICU and admit him directly to medical unit with a do-not-resuscitate order.

I pull the nurses aside and explain the situation. Fortunately, they are experienced senior RN’s, a model of their profession’s caring and competency. They tell me that they had seen too many cases where CPR was used on terminal patients. “Doctor, I’m glad you don’t view death as a failure in this situation.” Bless the nurses, they were looking after me!

The morphine drip is started, with small supplemental boluses. His sons are there. Larry seems peaceful and I say prayers for him silently on the drive home. I sleep well until the phone rings. Larry passes from his world at 3:14 AM.

Comment: The ethics in Larry’s death revolve around my intent (Arch Intern Med 1996;156:1785–1786.). In 1983 when I was caring for Larry, there were no clear guidelines so I had to function from my own training and personal comfort zone. In recent years, specialty societies have published guidelines (American Journal of Respiratory and Critical Care Medicine 2008;177: 912-927) but they are still not totally clear – hence the recommendation to use ethics committees in difficult cases. The type of sedation we used for Larry has more recently been referred to as "palliative sedation," which avoids the implication that it is the sedation that is causing the patient's death.

The intent with palliative sedation differs from euthanasia or assisted suicide. Palliation is used to relieve severe suffering, whereas the intent of euthanasia is to cause the patient's death. Some have derided this “dual intent” as splitting hairs. However, there is a unanimous 1997 U.S. Supreme Court ruling noting these distinctions, which may give significant legal support for this type of sedation (13Vacco v Quill. 521 U.S. 793 (1997). The change in thinking in bioethics continues to rapidly evolve in this area (Beauchamp, The Right to Die as the Triumph of Autonomy, J Med Philosophy, Dec 1, 2006).

I was deeply touched by the letter of thanks from his two sons that came a few weeks after Larry’s death, “Dad would love to shake your hand if he could; he died the way he wanted to. Thanks and God bless.”

Friday, April 9, 2010

A Cat on the Bed

There's a new book out about a special somewhat clairvoyant cat named Oscar. Dr. David Dosa works caring for Alzheimer's patients in a Boston nursing home. The uncanny cat, Oscar, is noticed by the staff to have an unfailing accuracy in being able to identify a patient in their last day of life. Although Oscar is amazing in his talents, no one really knows how he knows when death is imminent.

Dr. Dosa's story is about more than Oscar. He delves deeply into the family/patient/staff interactions with pre-terminal and terminal Alzheimer's patients and families. It was very hard for many families to accept that their loved one was dying and that hospice care was the best option at the end. There are sad poignant stories of families wanting to "do everything" including intensive care, ventilators, and CPR.

This brings to mind a patient of mine I'll call Frank. He had very severe chronic lung disease and was on oxygen. Every time I brought up end-of-life care he'd get mad at me, "Listen doctor, I'll decide that when the time comes. I don't want to think about it. And if I'm unconscious then my kids can decide what needs to be done."

"Frank, have you talked about your wishes with your children?"

"No, but they love me and will know what to do."

A few months later, Frank severely gasping called 911 when he couldn't breathe. The medics found him blue with shallow breathing, so they put a tube down his throat into his trachea. He struggled so much they had to heavily drug him. At the hospital he was placed under my care in the ICU. He had pneumonia which was very slow to clear. After about four weeks on a ventilator, it was clear that this was going to be a much longer trial for Frank. A tracheotomy was done along with attempts at nutrition and muscle strengthening. Attempts to wean him off the ventilator were unsuccessful.

During all this, the family was struggling. What would Frank really want? Was he in pain? Communication was difficult because he was so agitated when awake. Finally he was sent to a chronic ventilator facility where they specialized in cases like Frank's - trying all the means to keep him going.

Indeed, Frank spent two more months there before succumbing to a stroke. His end of life wishes were unknown. It was very hard for the family to limit care. So by making no decision, Frank had really decided on the default choice - do everything.

Comment: Now there's some hope for the benefit of end-of-life discussions in the research field. In a 2008 article in the Journal of the American Medical Association the authors report the following: "The researchers found that such discussions were not associated with higher rates of major depressive disorder or more worry, but these patients received significantly fewer aggressive medical interventions near death: lower rates of ventilation (1.6 percent vs. 11.0 percent), resuscitation (0.8 percent vs. 6.7 percent), and ICU admission (4.1 percent vs. 12.4 percent). Patients who had end-of-life discussions had earlier hospice enrollment (65.6 percent vs. 44.5 percent), and longer hospice stays were associated with better patient quality of life, while more aggressive medical care was associated with worse patient quality of life.

Patients who reported engaging in these conversations were significantly more likely to accept that their illness was terminal, prefer medical treatment focused on relieving pain and discomfort over life-extending therapies, and have complete a do-not-resuscitate order.

Caregivers of patients who received any aggressive care were at higher risk for developing a major depressive disorder, experiencing regret and feeling unprepared for the patient’s death, compared with caregivers of patients who did not receive aggressive care. They also had worse quality of life outcomes, including overall quality of life, self-reported health and increased role limitations. Better patient quality of life was associated with better caregiver quality of life at follow-up.

'Our results suggest that end-of-life discussions may have cascading benefits for patients and their caregivers. Despite physicians’ concerns that patients may experience psychological harm due to end-of-life discussions, we found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders. Instead, the worst outcomes were seen in patients who did not report having these conversations." the authors write.

"Given the adverse outcomes associated with not having end-of-life discussions, there appears to be a need to increase the frequency of these conversations. By acknowledging that death is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.'"
(JAMA. 2008;300[14]:1665-1673.

Although the research, as above, is showing that end-of-live discussions can benefit both patients and caregivers, the medical profession has a long way to go. We are taught to diagnose and treat. Now prevention of illness, life styles, etc. are being rightly promoted to enhance quality and quantity of life.

However, death, the "D word", is still not effectively dealt with in our medical system. Death is universal yet achingly difficult emotionally to bring up and discuss. The time though to have these discussions with our loved ones begin is when we're healthy and in our right minds.

When Oscar eventually approaches our bed, we need to be ready. Can we say, "I've lived a full life, told everyone that I love them, apologized to those I needed to, and come to peace with my maker?"

Let's hope we can smile when Oscar hops on our bed and snuggles up close.

The funeral as we know it is becoming a relic — just in time for a death boom

By   Karen Heller April 15 Ed note: Funerals are changing in ways that will bring culture shock and a shake of the head of s...