Decision Making At The End Of Life, Redux

In the hospital

Photo: Phalinn Ooi

When I was a third-year medical student rotating for the first time on a general medicine service inpatient ward, my team admitted a thirty-year-old woman in acute congestive heart failure. That a thirty-year-old was in congestive heart failure was unusual enough. Even more shocking was the cause: an echocardiogram revealed a tumor sitting on top of her mitral valve preventing the normal flow of blood out of her lungs to the left side of her heart. No one on my team, including the attending physician, had ever seen anything like it. A CT scan revealed widely metastatic cancer throughout her entire body—it looked as if every square inch of her had been splattered with buckshot—with no obvious dominant lesion to suggest its point of origin.With the diagnosis “metastatic cancer of unknown primary,” her prognosis was grim. Our patient’s oxygen saturation was hovering near 75% (normal being above 95%) despite the 15 liters/minute of oxygen we had flowing through her face mask. She was too weak to rise unassisted from the bed.  As we watched her lying there, laboring to breathe, we all realized we were watching someone in the process of actively dying.

When our attending physician gently explained to her there was nothing we could do to save her, she paused, mustered up the energy to give a small shrug, and from behind her oxygen mask said something in a tone I will never forget for its nonchalance:  “I guess that’s just the way it goes…”

The way she seemed to accept her fate, the courage she displayed in the face of it (if that’s indeed what we were seeing), was made all the more poignant when we learned she was a single mother of four small children.

THE CONUNDRUM OF END OF LIFE CARE

My patient’s case was as unusual as it was tragic:  thirty-year-olds rarely get cancer and those who do rarely present to hospitals only twenty-four hours before they die.  She had no real time to prepare herself or her family, and had no real decisions to make.  But in the 21st century, many of us will face a different experience.  We’ll see our deaths coming, be surrounded by caregivers attempting to prevent or forestall it, and in the technology-rich environment of the modern hospital, innumerable decisions will confront us and the medical teams in charge of our care.

One question typically dominates all end-of-life experiences.  It’s the first question that must be answered before any other, and answered again and again as circumstances change:  what is the goal of care?  Is it to cure (and palliate) or to palliate only?  How we answer this question hinges on the likelihood that cure is possible and the recognition of it, or lack thereof, on the part of the medical team, patient, and the patient’s family.

This is often far harder a question to answer than most people think.  Identifying the point at which a patient shifts from having a chance to survive a disease to actively dying is frequently difficult to nail down.  Even patients with incurable illnesses like terminal cancer can often live months or even years beyond what doctors predict.  Yet predicting likely outcomes is exactly what doctors struggle to do every single day with critically ill patients in order to be guided in choosing appropriate therapies.

At what point, then, should doctors, patients, and patients’ families step back, look at the proverbial forest for the trees, and recognize though we might reverse the kidney failure, treat the pneumonia, and anti-coagulate the pulmonary embolism, the likelihood of survival has slipped below our threshold for continuing to provide treatment aimed at cure?  The difficulty in answering this question is compounded by the fact that statistical probabilities for survival on which doctors rely predict outcomes for populations better than for individuals.  Exactly where a particular patient will fall on the survival curve for a given diagnosis like, for example, lung cancer (to the far left where survival is measured in hours or to the far right where survival is measured in months or even years—or somewhere in the middle where, by definition, most patients land) is largely unknowable.  Studies have shown repeatedly that, for all our population statistics, doctors are uniformly poor at predicting when the particular patient in front of them will die.  Yet when the spread between the shortest survival times and longest isn’t days or weeks but rather months or years, knowing where a particular patient is likely to fall really does matter.  If he or she is highly likely only to live a few hours no matter what we do, aggressive measures would be considered by most to be inappropriate.  If, on the other hand, he or she is most likely to live months or even years with whatever underlying diagnosis he or she has, the opposite is true.  What’s more, the likelihood of survival constantly changes as new complications develop or resolve.  Physicians must constantly recalculate the odds and often change strategies from cure to palliation (and even sometimes back again) depending on how a patient’s course proceeds.  It’s an enormously challenging process.

The key thing to know as a patient facing a potentially (or known) terminal illness is this:  no one can predict when you will succumb.  Where on the survival curve you’ll find yourself is anybody’s guess.  When to shift from an intent to cure to and attempt to palliate must always be individualized.  Unless you’re in the medical field yourself and have watched others die, you don’t know what to expect as you go through your own experience, so it’s difficult to know when you’re entering waters that will ultimately prove intolerable for you.  The best advice I have to give for people trying to decide about when to shift strategies is:

  1. Know yourself.  How important is a pain-free (or minimally painful) existence to you?  How much pain can you tolerate on a chronic basis before life is no longer worth living?  What self-management skills are most important to you (being able to feed yourself?  Dress yourself?  Clean yourself up after you go to the bathroom?).  You often won’t know the answers to these questions until you experience the circumstances that cause you to ask them.  But consciously asking and answering them can be empowering.
  2. Communicate.  With your family.  With your physician.  With your nurses.  Talk in general terms about your preferences surrounding dramatic life-saving measures (CPR, defibrillation, artificial ventilation) before you ever come close to needing them.  Do this even before you’re even diagnosed with anything that might make such conversations necessary.  If you change your mind (and you always can) revisit the subjects as many times as necessary, no matter how awkward it may be for you or your family.

WHO DECIDES WHEN TO PALLIATE?

The answer, at first glance, might seem as if it should be doctors and patients and patient’s families all working together.  And this is usually, in my experience, how it goes.  But making a collaborative decision to switch from an intent to cure to an intent to palliate only, or leaving the decision entirely in the hands of a patient’s family when the patient is unconscious or otherwise unable to decide for themselves often has an unintended consequence:  guilt.  Family members who find themselves burdened with decision-making authority over their ill loved one who decide to withdraw aggressive medical care even for the most logical and compassionate of reasons are often left feeling, whether rational or not, that they themselves killed the very person they meant to protect.

Having seen this multiple times early in my career, I’ve since taken to telling families when further attempts to cure seem hopelessly futile that, though their agreement is necessary to switch to palliative care only, I’m more informing them that’s what we should do than asking their permission.  It may seem at first glance overly paternalistic to say, “This isn’t your decision to make, and it’s not mine, either.  The disease made the choice for us all.”  But in all the years I’ve been caring for terminally ill patients, the only reaction I’ve ever encountered in response to my saying this, usually after days or even weeks of emotional ups and downs as their loved one improved then worsened then improved and then worsened again, is relief.

WHERE TO DIE?

Most patients express the desire to die at home when asked (which itself happens rarely) but few do.  Why?  Because even when a plan to die at home is laid out in advance, complications invariably arise that weren’t foreseen and patients and families panic.  They then come back to the hospital for reevaluation and reassurance.  Despite the extensive home services we’ve had available in this country for decades, dying at home still seems to be the exception rather than the rule.  My only piece of advice here:  if you’re certain you want to die at home, if it’s important to you, discuss in advance the panic your family will undoubtedly experience and plan for it.  Recognize and discuss the possibility of your own panic and plan for that as well.  But also know that if in those final moments you change your mind and go the hospital, that’s okay, too.

PAIN MANAGEMENT

There are thankfully few circumstances in which modern medicine can’t adequately control a terminal patient’s pain (though, of course, exceptions do exist).  There is sometimes, however, a choice to be made between pain control and level of alertness (narcotics are good pain relievers but may impair a patient’s consciousness at the high doses sometimes required to quell pain).  Surprisingly, almost every patient for whom I’ve cared who was faced with this trade off has chosen to endure more pain rather than clouding of their consciousness.

Doctors are notoriously undertrained in the principles of good pain management, often reluctant to go after their patient’s pain aggressively.  Patients should communicate directly and concretely their fears about needless suffering and their expectations that their doctors will work with them to keep them comfortable.  I always make a point to say two things to my terminal patients that in my experience has never failed to provide reassurance:  “No matter what, I will not abandon you” and “I will keep you comfortable.”  And I mean both.  If your doctor fails to convince you he or she can and will as well, find another.

IN THE END

I came back to see our patient several times during the day to check in on her, to see if she needed or wanted anything, only to discover that each member of my team had done the same thing, bringing her what she’d asked of each of them:  candy bars.  Torn Kit Kat, Snickers, and Three Musketeers wrappers lay strewn about her bed.  She seemed grateful for these small gestures.  I wanted to ask her about her children but couldn’t work up the courage (I think I deliberately wanted to avoid learning an answer I would find heartbreaking).  So instead I came back later with a candy bar myself.  Unfortunately by then the team had turned up the morphine drip to help her with pain and she’d lapsed into unconsciousness.

She died later that night, in the hospital, but pain free.  I found out later her children only learned their mother had been admitted to the hospital after she’d already died.

7 comments to Decision Making At The End Of Life, Redux

  • Derek Freyberg

    A sad story with a “teaching moment.” The issue of decisions on end-of-life treatment is a tricky one, especially if you are asked well before your *expected* end of life what you would like done.

    As an example, I have a health care power of attorney, allowing my wife to make health care decisions for me if I cannot while specifying my general desire that my life not be unnecessarily prolonged if recovery (from the condition that makes me unable to decide for myself) is unlikely. My primary care doctor, knowing this, asked me: “But what would you like done if you were to collapse out in the waiting room as you walk out of here?” Right now, the answer is “see if I can be revived,” assuming that revival brings me back to something like my condition at the time of the conversation; but 20 years from now, if I live that long, my answer might be “stand back and let nature take its course.”

    It’s tough from my point of view to resolve these in the context of legally binding instructions (HCPOA and POLST).

    Derek: I completely agree. Research also suggests many of us are pretty terrible at predicting how we’ll feel when an anticipated disaster actually comes to pass. Many of us would find life still worth living in circumstances that today we might think would have us pulling the plug on ourselves.

    Alex

  • Derek Freyberg

    Alex:

    Thanks for your answer.

    Your friend Jerry Coyne asked, a few days ago on his website, something like: “How would you like to die?” The classic male answer, of course, was “shot, in bed, at the age of 90, in the middle of intercourse, by a jealous husband”; but that’s not really helpful to the rest of us—not to mention that a number of the female correspondents took exception to the idea that having their partner die on them, by whatever mode, in the middle of the act, was attractive/fair/reasonable to them.

    So, as a practical matter, what should I or someone like me do, when they are not imminently dying or even under sentence of imminent death, but are suggested to be making these decisions? [I’m of course not looking for a prescriptive answer; rather how do you think that people should address such things as HCPOAs and POLSTs?]

    Derek: My answer is that while these documents are valuable and important, medical teams always look first to family members and/or people with medical power of decision making. It falls to these people to guide decision making based on their knowledge of the patient’s wishes, which they then must apply to whatever situation arises. Such people are invariably called upon to exercise their judgment and interpret the patient’s wishes as best they can. So my best advice is: 1) pick the people you trust to decide for you carefully and 2) communicate your wishes in as much detail as you can, knowing that there will always exist the risk that, when faced with an unforeseen situation, despite everyone’s best attempts, those wishes may not be followed exactly as you would have wanted had you been capable of making decisions yourself. If you read the post I put up about my father’s death, you’ll get a sense of just how difficult these choices can be.

    Alex

  • Jean Manly, LSW

    As sad a story as I have read in this blog. Thank you for your coverage of what must have been a difficult day, and for sharing in some detail the lessons you learned.

    But it left me with some haunting questions. Who was caring for the children when Mom came to the hospital? When was that person notified? Were social services called, and if so, when? (Most hospitals have rotating 24/7 coverage for social work services, and these people have been trained to ask the questions that you were not comfortable asking, and can often provide practical resources as well.)

    Jean: This was so long ago that I don’t remember. I do remember that our social services people were involved. As a medical student, I just didn’t have the experience/maturity to ask her myself.

    Alex

  • Phyllis

    I am confused as to why, when it was acknowledged that this young mother of 4 was clearly dying and her children were not present, medical personnel were “reluctant” to ask about her children. If only to assure that the dying mother could express how they should be cared for after her death. But also to give the children an opportunity to see their mother before she died. That is a sad part to the helpless feelings of the treaters here, but to me is the teaching moment.

    Phyllis: It wasn’t the team that was reluctant to ask about her children. It was just me, which I chalk up to my inexperience/immaturity as a medical student.

    Alex

  • Susan

    “The disease made the choice for us all.”

    What an INCREDIBLY kind way to phrase this. I haven’t (yet) been in the position of having to make this decision for any human family members. I have, on the other hand, made this decision for two extraordinarily loved cats. Though it was clear medically that it was time to euthanize them—they were both suffering—it’s still the two hardest decisions of my life. I dread being in this position for a human family member. Bless you for recognizing how utterly destroying guilt can be in a situation like this.

  • Vijaya Chandramouli

    The disease made the choice for us!

    Yes—indeed the disease and the place in we were in Time decided everything for us!

    Every day since that fateful day in April 2014 I question myself as to what might have happened had we not taken my husband to hospital for treatment. My husband was diagnosed suddenly with AML—Acute amyloid leukemia without any symptoms. My husband declared clearly that he did not wish to have any treatment but my son-in-law calmed us all by saying we would decide after talking to the doctors at the hospital.

    Harsh chemotherapy was begun after mechanically lowering the white platelets as the count had risen by a shocking 500%. The first round went off reasonably without any considerable “suffering” or perhaps it was due to my husband’s patience and consideration towards me—his immense caring and love for me and the family that he was so full of equanimity. The second round was begun after a pause of a week and this time his system could not mange to fight the poison injected into him.
    However, when his condition became very serious with high temperature and diarrhea he was transferred to the Emergency Section. And yet the physicians involved did not speak of repercussions nor the imminent end. One of the assistants observed his breathing to be labored and without any warning put him on a partial ventilator and that was the end of the conversations I could have had with my husband. I had been asked to leave the room for them to install the ventilator and when I returned he was in a state of stupor that keeps haunting me. They had given him pain killers etc. and he was in no position to even open his eyes. The next day the young doctor from the ER called the whole family to the hospital to just inform me even as my husband lay on the bed in the room.

    “Today your husband is going to die.” Coming from a different culture and being of an older generation these words were “unreal and unimaginable.” I did tell him as to how he could say such a thing for despite being a doctor no one can ever predict something as death! I sincerely believe that he did not do it out of sadism but just routine “surgical observation” of my husband’s various medical parameters.

    To this day I feel such remorse and regret that I could not speak to my husband in his last moments. Had the medical team spoken to us frankly about my husband’s deteriorating condition we could have spent our last moments in our own intimate togetherness. Having been married for exactly 39 years it is still a pain that will only leave me when I close my eyes.

    Strangely, the team of doctors who treated my husband did not even contact our family to say a few words of sympathy—not that it would have mattered but after all in the end we are all human beings and have feelings and emotions. All of us shall also go the same way!

    Your empathy towards this young woman is touching. Empathy is the fundamental pre-requisite of anyone becoming a doctor. In fact each and every human being irrespective of what he is has to first be humane and sensitive. I hold no rancor against anyone and finally can only come to peace with myself with the thought that it was our joint “karma” aligned with each other and that despite such a wonderful togetherness throughout life we could not say our goodbyes!

    Such is life!

    Vijaya: I’m so sorry to hear of your husband’s death. I’m sorry also it didn’t proceed as you wished.

    Alex

  • Suzann

    The woman who raised my purebred cat was extremely obese and 81 years old. She had gotten blood poisoning from a blood blister that was not adequately treated and that began the hospital/secondary care series that eventually brought her to a decision on ending her life. Her lungs had gotten so bad due to mouth breathing that she had a choice: hospice until she passed on or the doctor would assist her departure.

    She told me she was afraid to die; the unknown was too scary. With all that I’ve studied on reincarnation through the University of West VA and many other works like the Journey of Souls, I’m a strong believer. So we had a discussion about it and in the end she decided to go ahead with the assisted departure. Her husband later described the process as increasing sedation as they decreased oxygen. It didn’t take long as she could not survive without it; she was ready to move on. I was very relieved to hear that the medical community would actually do that.
    While the family finds it very hard to lose a loved one, I have long heard that we choose when to leave. Living in a 55+ cooperative I see this quite often with the those in their 90’s who know it’s their time and are ready, period.

    It is not the end of our soul; it is the end of our current body. As they say, we are souls having a human experience. Half the world’s population now believes in reincarnation but I’ve found you only really learn that concept when you are really ready. Up until then it’s just another story we don’t understand and therefore ignore.

    So yes, we grieve them when they leave us but really, they are always with us no matter what. We often sense that and it’s really comforting to know they are still there.
    I also know I am being guided due to all of the experiences I’ve had over the past several years. It’s very amazing and I’m so grateful to have this very spiritual experience happening in my life, pointing me in the right direction.

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