NYT:this should open even without a subscription: https://www.nytimes.com/2024/08/26/well/patients-dnr-orders-ignored.html?smid=em-share
This article brought me a flood of memories from medical practice many of which haunt me (and may haunt you).
Funny Story: I had an OBGYN partner, Dr. Drygas who was an excellent surgeon. Henry had a sense of drama and unusual stories—-he was one of the few people I have ever known who was at Woodstock. I was assisting him at surgery with an elderly woman—she was having a hysterectomy. My attention during surgery was drawn to his complaint that his surgical scrub pants were falling down. This was (and remains) unusual: Henry was morbidly obese and once the draw string pants dove south of the equator of his belly, gravity took over. Henry’s modesty was protected—he was draped in a gown for surgery but his mobility and his confidence were limited by the fact that his pants were now around his ankles. The scrub nurse and assisting nurse were aware of his situation but it was beyond the call of duty to expect that they would in fact, bend low enough and then make contact enough to rectify his problem while maintaining sterility--say nothing of dignity. The pace of the surgery had slowed as the laughter had increased because of this discomfort when the anesthesiologist raised an alarm: the patient’s heart was irregular, slowing, and her blood pressure was taking a dive. Henry, being an OBGYN, was not up to date with his CPR (recuscitation)—and he did something “not protocol,” as it was very out of date—maybe something done back at Woodstock— he did a chest thump (a clenched fist striking the sternum with moderate force) which in fact, was soon associated with an improved pulse rate and blood pressure. The surgery was stopped, no critical point having been reached, and we closed her incision rapidly. She was transferred to the ICU and Henry finally got to get his pants on, with dignity….
Know this rule: elective surgery patients are just not allowed to die in the Operating Room. It is not a question of liability. Rather, the notion that elective surgery, once committed to, is supposed to be done without death on the horizon. Most proceduralists (surgeons, gastroenterologists, urologists) focus on repairing things and do not take philosophy or end of life questions into their day to day work. Once more, the OR is not set up to do a proper resuscitation. That said, surgery is done these days to patients who would never have been considered for surgery in the past. Ninety year olds get heart surgery for example. When I had my total knee replacement done in an out patient surge-center, despite having a DNR, I signed the waiver on my DNR for the time at their facility as otherwise, the surgery was not going to take place.
A caveat: in my life I have come to know of two types of Oncologists. One would think this speciality above all others would be comfortable with issues surrounding death but it is not always so. There are humanist oncologists; these will engage a patient and the family about pros and cons of treatment, perhaps giving some editorial advice. They tend to be practical and when hope is all but gone, they are good communicators and not afraid to bring in help—like hospice. They commiserate, hug, and call to check in after hours. There are technical oncologists. These are constantly searching for, “one more thing” to try and the problem of treating cancers is one complicated technical puzzle—or video game. In my experience, when they have run out of ideas, they communicate the need for hospice to me without necessarily broaching the subject with the patient. When they do call in Hospice, it is often with a week or so life left to live—much much too late.
The first two cases of the NYT article refer to the funny story—people having procedures done in a hospital surgical center. Death was not imminent when the procedure was planned but both suffered “codes” and were resuscitated despite documents and clear expectations with their loved ones that this not happen: they wanted to die a natural death if that was the outcome of their illness—without resuscitation, a ventilator, feeding tubes, etc. What follows in the article is a common inability for the legal paperwork to be known ie allowing the medical team to not, “go there” with the resuscitation. It also speaks to many health care professional’s discomfort with their role in that decision making—does a DNR (Do Not Resuscitate) mean “No treatment” at all? What does it mean exactly—even when details are spelled out clearly in a POLST form (the—In Washington State—fluorescent green paper put on the refrigerator so that the 911 team arriving to an emergency has “permission” to not proceed with resuscitation and transportation to a hospital). This begs the question, “If you don’t want resuscitation and that is the point of our being there, why did you call 911?”
It is a good question!
Funny Story: When in residency, I came to know an elderly man (early 60’s!) who was found incidentally to have an abdominal aneurysm. In those days, the repair of the aneurism was a “slog” of a surgery, taking up to eight hours and leaving the patient pretty disabled for six or more weeks afterwards. The procedure now is much less invasive and with much less morbidity. I reviewed the repair process, inquiring as to his interest to have it scheduled as his aneurism was dangerously large. On hearing this, he nodded sagely and said what many people say in the office: “Well Doc, you know, I have lived a good life and I don’t think I want to go through that. I say, when it is my time, I will be content with that.” I thought, “How brave! I wish more people thought like that.” Six months later, I was working in the Emergency Room when he presented with abdominal pain and testing suggested he had a leaking aneurism; death was right around the corner. “God Damn! Call that surgeon, I want this fixed and fixed now; I am not ready to die.”
So what we say in the moment may not reflect reality or what we really want. We don’t always know ourselves.
I used to discuss this issue during the “Medicare Physical” which was more of an accounting for what might go right and wrong over the next decade rather than an actual examination. Often, without the spouse in the room— typically, a man— would assert that he wanted a DNR and the paperwork would be attended to. I would ask the question: “OK, so you don’t want to be resuscitated. You collapse in front of your wife, and you don’t appear to be breathing. What do you want her to do? If she calls 911, I promise you, they will resuscitate you — unless you have the POLST form on the “fridge” and your wife tells them not to do it. And even with that, they may still do it. The alternative? Do you want her to hold your hand and wait awhile? Who can do that?”
The third case in the NYT article is that very scenario—where the ambulance crew takes the POLST form with them at the wife’s insistence as the patient, still breathing but gravely ill, is transported to the hospital. He goes downhill, the POLST form is lost in the chaos, and the patient ends up a vegetable requiring nursing home care.
No more funny stories: this is a practical problem we all will face for both ourselves and our loved ones. No legal document protects you. In fact, in the face of the POLST form lying on the chest of the very sick patient in an ER or Hospital bed will find virtually every doctor ignoring it, especially if no one is there to argue differently. They welcome someone in the family arguing differently even it it contradicts what were clearly the patient’s wishes. If this is important to you, it requires energy—someone has to be at the bedside of whoever is sick and dying--to achieve this goal. If the patient desires a natural death, an advocate is needed or the momentum of well-intended medical care ie many many interventions will take place.
Strangers can help, as can doctors you know: I met an old man in the hospital and I was there to admit him to the hospital. He was not known to me but his record showed that he was 80, had lung cancer, and was suffering his third pneumonia in 6 weeks. He had been admitted to the hospital twice before and being sick enough, the ER doctor had reserved him a bed in the ICU. He had two daughters in attendance. They looked frantic with concern. I spoke with him and carefully explained that I could admit him to the hospital and he would likely follow the same path as that of the recent two pneumonias. And I added, “you have cancer in your lungs making these infections happen, and there is no cure for that. It is going to happen over and over. If you haven’t considered it, another possibility is you can go home and I can enroll you in Hospice.” I reviewed what that meant for him and his family (home supports, equipment in the home, nursing visits, pain relief). He nodded and agreed that he would prefer that. The daughters did not object. I never saw him again. Years later, on the phone with a county official, the woman asked, “Are you Doctor Moeller?” It turned out, she was one of the daughters. While I could not remember her father’s name, her praise and thanks for that suggestion, and the peace that came to the patient and his family after that night brought me close to tears.
That was a great call, and not enough of us doctors think to suggest it. Too many family members are afraid to ask about it because our culture equates Hospice with giving up. That is a psychological/perception problem because I have had patients on Hospice for years—how about that Jimmy Carter? Hospice patients have a guarded prognosis and usually no longer seek life extended disease-specific therapies but there is no change in the treatment for common illness (urine infection, pneumnia, skin infection) or discomfort without the patient directed that specifically. Hospice is not just for the dying patient, but for all their supports in attendance, family especially.
A very good friend of mine worked in an Urgent Care. He had seen my patient the night before and had diagnosed an acute MI (heart attack). The patient refused to go to the hospital and signed out against medical advice. My friend was distraught as he had just gotten a phone call from the coroner noting that the patient had been found dead—from the MI—at his hime that morning. I knew this patient well. His wife had died a few years before and his concerns about his memory and ability to cope with his bachelor life revealed a progressing dementia. He knew of this diagnosis. His refusal to go to the hospital, I believe, was a conscious act with this diagnosis in mind. Having an MI at home is not a death sentence, but it was certainly an obvious risk, one that was clearly laid out before he left the Urgent Care. My comment to my friend, after I added this information, was, “I hope I am as brave as he was when it is my time.”
I hope I know myself well enough to actually follow his example.
The Medicare Physical conversations often found me giving advice: whether you have the legal paperwork expressing your desires or not, you need to have a conversation with your spouse and children with some specific scenarios in mind—you can’t cover them all—What is your philosophy and what are your choice points regardless of whether it is your brain or heart or pancreas that is leading to death? Have enough of a conversation that if in the ER, when you are unconscious, and your children are caught up in the drama, the fear, and sadness, when asked for a decision about, “What would you like us to do?”, they can respond accurately to the question, “If you dad were in the corner over there, watching us, what would he advise?”
Not enough of us future patients think to actually do that…..
Last story: An old friend grew despondent after we had lost track of each other. He attempted suicide by taking a cabinet full of medications. He was transported to a hospital where I did not work. I learned of his admission to the ICU on a ventilator from his sons who expected him to die. He did not die. We visited him and could not really assess how he was doing as he was sedated heavily, being on a ventilator. He was frail and in his late 80’s so his prognosis was not good. On day ten, I, having talked to his sons, called his doctor and presented him with a problem: “He has been on the ventilator for then days. If you are going to continue with this, he is going to need a tracheotomy (minor surgery to place a tube for breathing in the neck) and his sons will not consent to that. I advise against that. So you have a decision to make! We would like him extubated.” The doctor was annoyed. “He tried to commit suicide. If I take that tube out, he may die.”
“You are right,” I said, “He may well have succeeded.”
After consulting with the hospital lawyer, my friend was extubated the next day. No longer drugged, he awoke and smiled, recognizing his boys and Kernie in the room. When asked, if there was anything we could do, he response, “Well, I would like some Daiquiri Ice from Baskin and Robbins.”
That sealed the deal. He recovered slowly (he was 88 years old) and we visited him every week until he died of old age, years later. He had a great series of years after this event having agreed to never, “try that again…..”
Advocacy for end of life care sometimes holds surprises.
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