Decision Making At The End Of Life
When I was a third-year medical student rotating for the first time on a general medicine service inpatient ward, my team admitted a 33-old woman in acute congestive heart failure. That a 33-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: 33-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 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:
- 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.
- 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 might seem at first glance as if it should be doctors, 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.
There are thankfully few circumstances in which modern medicine can’t adequately control a terminal patient’s pain. 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.
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An issue that really haunts me is suppose the patient is not terminal but just doesn’t want to suffer any longer as when there is a chronic illness. What are the guidelines?
Dear Dr. Lickerman,
Thank you for this eloquent post.
I’m an internist who since 1990 has been in-and-out of rx for an indolent lymphoma. As I mention today on my blog, “less aggressive care and early referral to hospice can be considered proactive steps in the pursuit of high quality care at the end-of-life (and not just ‘giving up.’)” https://tinyurl.com/HS-032110
You probably saw Jane Brody’s NYTimes Personal Health column last week, but just in case: https://tinyurl.com/HS-032010
With respect and hope, Wendy
Thank you, Alex, for this thoughtful post. I would add one more entry to the To Do list for end of life planning: do the paperwork. Make or update your will; double-check who’ve your named as beneficiary of any life insurance or retirement account you might have; execute a power of attorney; appoint an executor. These steps will ease some of the burden on your survivors and help to ensure your intentions are carried out.
You skipped an essential first question, one very much germane to this blog, and without which the question How much pain can you tolerate…before life is no longer worth living? is unanswerable.
What makes life—your life—worth living in the first place? It’s a harder question than most think.
If I can piggyback on Chris, the paperwork should include explicit instructions on this subject. In my state, it’s called an Advance Directive; in others, a living will. Often, the form is set by statute and requires only a single witness (not an attorney, notary, etc.). My state’s is very comprehensive in terms of medical situations and possible responses (every measure to prolong life, ventilator or no, nutrition or no, pain relief only, etc.).
A lot of the anguish for the family is trying to do what the patient, when that person can no longer speak for himself or herself, would want done. An Advance Directive takes the guess work out of that. For those who avoid the issue because of the painful and awkward conversations that would be involved, it can make it easier to be able to just prepare a form, give it to the people who will be at your side when the time comes, and say, “I’ve filled this out to make my wishes clear. Let me know if you have any questions.”
A documentary that played on PBS a few years back, “A Lion in the House,” followed several children with cancer, and as someone who had a parent die while I was in high school, it was shocking to see my own and my family’s drama played out in this film. I guess the end-of-life drama is pretty much the same for all of us, and we’ll tend to make the same mistakes if not given forewarning of what’s in store. It’s a tough film to watch, but it’s worth it.
What a heartbreaking story. She was lucky to have you on her team.
Thank you, Dr. Lickerman, for that poignant story. You are right that planning in advance of a serious illness is the wise course, but it’s one few actually follow, and particularly young people. We have found with “Five Wishes” that people will begin and complete these conversations if the discussion is framed in terms that are meaningful. People will turn away from talk of ventilators and feeding tubes, but they will freely discuss maintaining dignity, comfort, family issues and forgiveness. National Healthcare Decisions Day is April 16, a good day to think about and plan for what kind of care you want or don’t want. As with Terri Schiavo, these decisions will be made for you by somebody else if you don’t put your wishes in writing and designate your health care agent—Paul Malley, President, Aging with Dignity.
We all desire the information to “control” this messy process of death. There’s much to be learned to help us prepare, but ultimately, it’s rarely the way we envisioned it; it’s a shock, and the survivors are left with many questions about whether they did the “right thing.” Even if we were more familiar with (non-medicalized) death, it still remains one of the most life changing events, in both good and bad ways, for those left behind.
Thanks for your post,
I read Jane Brody’s moving column in the NY Times and realized it was time to do some serious thinking about end-of-life issues. And now, you’ve put “meat on the bones” so to speak. I’ve hit the print button and will use your post to begin a discussion with my husband and our two grown children. Once again, thank you so much, Alex.
Your eloquent and touching story and discussion of what doctors must deal with is deeply moving. It’s been obvious in many of your other posts, but this one really makes it clear that while medicine is science, it is also so much an artful blend of intuition, experience, teamwork, compassion, and being human.
I am a hospice nurse and can say for sure that many do not die at home because many MDs are reluctant to refer them to hospice. And when they do, it is often at the request of the patient or family.
I called one highly respected Boston MD recently about his patient who was on home hospice care, to ask about increasing his Morphine dose. His reply? “If he is that sick, shouldn’t he be seen in the ER?” (The patient was an 88 year old with end-stage CHF.)
Most patients get their cues from the treating MD and most MDs do not understand hospice care.
Hospice care can and often does provide for a comfortable death at home or even in the hospital as a hospice general inpatient. There we work with the medical team to offer palliative services and also to provide bereavment support to the family and loved ones.
Your blog is good work. I enjoy reading it.