Monday, September 21, 2009
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
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
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
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
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
Wednesday, September 9, 2009
Shakespeare's 73rd sonnet
That time of year thou mayst in me behold,
When yellow leaves, or none, or few do hang
Upon those boughs which shake against the cold,
Bare ruin'd choirs, where late the sweet birds sang.
In me thou see'st the twilight of such day,
As after sunset fadeth in the west,
Which by and by black night doth take away,
Death's second self that seals up all in rest.
In me tho see'st the glowing of such fire,
That on the ashes of his youth doth lie,
As the death bed, whereon it must expire,
Consum'd with that which it was nourish'd by.
...This thou perceiv'st, which makes thy love more strong,
...To love that well, which thou must leave ere long.
Sunday, September 6, 2009
The staff at the hospital was multicultural to put it mildly. There was the lilting accent from Kerala State in India, the soft respectful dialect of the Filipinos, the clipped English of the British, and the English of all varieties from Egypt, Lebanon, Turkey, Sudan, and Texas. My Arabic was rudimentary so I would rely on a Palestinian translator but this morning I had Mohammed, my medical student. Mohammed was typical of the rising generation of young Shia Muslim students - bright, eager to learn but with a world view quite foreign to my western eyes. I had gradually learned that they see the world through the lens of their religion. I respected that there was a lot of good intent in that but saw the inevitable clashes with western ideas.
We had gotten into a discussion about what happens after death. I knew talking religion or politics in that part of the world wasn't the wisest thing to do, but I couldn't resist trying to reason with Mohammed. He had let me know in earlier conversations that he felt disenfranchised from the Royal Family. "Look Jim, the oil comes out of the ground literally from under our feet here, but all the profits go to Riyadh. There is no real income for me here. I can't even afford to buy a wife." He added, "The oil should stay in the ground, the Americans should go home, and we should follow the Ayatollah (in Iran)."
I really didn't want to talk politics, so I pursued religion, "Mohammed, I view Allah as a merciful and a loving God (despite the extremists' interpretation of the Koran). The ten commandments are in all religions. Don't you think that all people who try hard to live a good life and show love to the neighbor would be welcomed into heaven? Mohammed had an unsmiling but sympathetic look on his face, "Jim, when you get to heaven and I'm at the right hand of Allah, I'm sorry but you can't be admitted unless you're Muslim."
Despite our vast differences in culture, we respected each other and could cooperate well in patient care, in which Mohammed was excelling. We walked to the bedside of our asthmatic patient, Sanaa which means "brilliance" in Arabic. She seemed rather calm despite receiving no sedation over night in hopes of removing her endotracheal tube which tethered her to the ventilator. The vital signs were stable, the blood gases were good and she seemed very alert having written many pages with paper and pencil.
I assumed she would be writing out the usual questions: "My throat is sore, when will this stop, where am I, what happened, let me out of here, I want my Mom." Actually, Mom was there at the bedside and all was peaceful. I asked Mohammed what Sanaa was writing and why she was so peaceful, "Jim this is not unusual. She has been praying as has the family. The prayers are to have Allah guide the doctors and nurses and to help her to be content with her lot. She has been writing poetry praising Allah."
Sanaa, doing well, went home with Mom 3 days later.
Tuesday, September 1, 2009
Note: The following case isn't really an end-of-life issue but could have been if the intentional overdose taken was larger. To me it demonstrates the unfortunate tendency for teenagers to act out and experiment.
Note: The following case isn't really an end-of-life issue but could have been if the intentional overdose taken was larger. To me it demonstrates the unfortunate tendency for teenagers to act out and experiment.
The call came from the ER doc just as I was sitting down to dinner. A young man I’ll call Jason was being admitted to the ICU who appeared to have overdosed on something – as yet unknown. The ER doc had done a good job, but it wasn’t yet apparent what the toxic substance was and she sounded worried warning me that this was a hot potato going upstairs and that I’d better come in.
A friend had called Jason earlier and stated that this 18 yo was talking gibberish. On his arrival at Jason’s apartment, the place was a mess, Jason was “out of it” so 911 was called. Their assessment in the field described a well developed male, pupils dilated, neck supple, delirious, temperature 101, heart rate 130, skin dry and warm. They located his father who sounded hostile and upset because of Jason’s tendency to experiment with drugs. The parents were separated and the mother was out of the country. No drug paraphernalia was found in his room.
In the ER, a toxic screen was done as well as the usual labs to rule out a metabolic problem. Glucose was normal as was liver and kidney function. Chest X-Ray was normal and the EKG showed only tachycardia. The screen for toxins showed no alcohol, marijuana, opiates, or other tested drugs. There was a trace of tricyclics (not enough to explain symptoms). Because a drug overdose of uncertain type seemed highly likely a charcoal lavage was done and he was admitted for observation to the ICU.
The neurologic exam was remarkable for the very large pupils and minimal reaction to light. He was jabbering, hallucinating, and unable to answer questions. His neck was not rigid and he moved all extremities well. The skin and mucous membranes were very dry. No bowel tones were heard. The bladder was distended so a catheter was inserted with 900 cc of urine resulting.
So what did this all add up to? I had my suspicions but needed to talk to Poison Control in
Poison Control was extremely useful as they always were. They noted that scopolamine or atropine could give a weakly positive response to the tricyclic screen. They also pointed me to a CDC report on Jimson Weed poisoning. 318 cases were reported in 1993 in which there was intentional misuse by teenagers eating seeds, drinking tea, or smoking Jimson Weed cigarettes.
The CDC report also noted the following: “D. stramonium grows throughout the
A colleague also reminded me of the pneumonic we learned in medical school: “Blind as a bat, mad as a hatter, hot as a hare, red as a beet, dry as a bone, the bowel and the bladder loses tone, and the heart runs alone.” Or, in the coarse vernacular of the medical student: “Can’t see, can’t pee, can’t spit, can’t shit.”
All this sent me to the internet where a wealth of information exists on the historical, medical, religious, social, and abuse aspects of this class of drugs. The pharmacology we all learned in medical school: strong anticholinergic properties: hyoscyamine, hyoscine, atropine, and scopolamine. They are competitive antagonists to acetylcholine at peripheral and central muscarinic receptors at a common binding site. As tertiary amines they can cross into the CNS. The half life is 4 hrs with hepatic metabolism
Datura Stramonium is native to Asia but in the West Indies,
Jimson is contracted from
Cornpicker’s pupil is a rare cause of a unilateral dilated pupil caused by the farmer rubbing his eye after being in contact with Jimson weed.
Two of the cases reported by the CDC were deaths in teenagers where the Jimson weed tea was mixed with alcohol and the bodies of the two boys were found on the desert in
Jason did not receive physostigmine which is controversial but at times used in life threatening situations. With supportive and observational care, he was markedly improved the next morning and discharged the following day. He candidly admitted learning how to grow Jimson weed via internet sources, then making his own tea. He was urged to have counseling but refused. The obvious conflict with parents was unresolved. He defiantly stated to the Social Worker that he intended to continue to experiment with psychoactive drugs. So the story probably didn’t end there.
Note: For further information on the history and urban legends surrounding atropine and scopolamine I’d suggest that Wikepedia as the best place to start. The drug use dramatized by mystery writers is pretty amazing.
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