Living Will, Dying Well

I glanced at the chart. New patient, female, age 72.

I have adopted the practice with new patients of quickly scanning the medication list before opening the door to greet them. In the old days patients hand wrote their medications on a paper intake form prior to the office visit. Now I click the “medications” tab in the electronic health record to review the data already entered.

A medication list can tell a doctor a lot about a patient. One glance and I know immediately what active health problems a person has, what risk factors she might have for heart disease or stroke, whether I should worry about lung cancer, whether our interaction might be complicated by mental illness, and how quickly I should move through any aspect of the office visit.

Christina Cook (name changed) recorded no medications on her form. Great! I thought. An opportunity actually to talk with my patient! I wasn’t very far into my primary care career when I realized that medical complexity is inversely proportional to how well I feel I know a person at the end of our first office visit. Sure, I see patients with complex medical problems more frequently, and over time that does amount to a greater opportunity to build relationships. But such visits typically center around managing medicines, ordering tests, and reviewing the recommendations of the specialists. At least as far as the new patient visit goes, the less complicated the patient, the more I come away with a sense of who she is.

I knocked and opened the door. Ms. Cook sat upright, with a smile on her face. Clad in a sophisticated black, she was true to form for a certain type of New Yorker. She kept an apartment in “the City” and a home in Connecticut. She read the Times and held season tickets to the opera. She was a widow but far from lonely. She had borderline blood pressure which she managed through the salt substitute Mrs. Dash and a daily three-mile walk. Though her cholesterol was probably deserving of a statin, she committed to a life of morning oatmeal: “I will discipline myself not to have to take a pill. I will learn to like that stuff.” And she cut back on red meat to once a month or less.

At some point during the visit, she asked if I would like a copy of her living will. Taking it, I asked casually, “Can you summarize it for me?” I ask this question for a couple of reasons. The first is that I typically don’t have time during the office visit to read the document in its entirety; patients can explain quite quickly if they “don’t want to live on machines if there is no hope.” Also, I like to confirm that patients understand what they have signed. Though far from the norm, I have met some people who have signed living wills that they don’t really understand.

Ms Cook’s response surprised me. She never wanted cardiac resuscitation or mechanical ventilation. “Ever!” she declared. She went on: “Look, I’ve watched friends die hooked up to machines they didn’t want. Besides, my niece and nephews are doctors, and I’ve heard their stories for years. I know that life support can keep me alive, but I’ve lived a long and healthy life. If something happened to me now, I’m okay with dying. Just let me go! And don’t prolong my suffering!”

Really? I was incredulous. Among my medical colleagues, such a choice would not be unusual and would perhaps be affirmed with the insider’s nod. Physicians routinely witness the awesome power of life-sustaining medical technology, but such experiences go hand-in-hand with the death-delaying suffering inflicted by that same technology. And when it’s their turn to die, doctors opt for fewer life-sustaining interventions. But who ever heard of this from a nonphysician patient, a young 70-something-year-old and in excellent health? Surely she would want a trial of mechanical ventilation if she developed a pneumonia.

I made a note of her wishes in the chart. Then, separately, I wrote her name on a yellow sticky note and put it in my desk. I vowed to remember this specific conversation and to ask about her wishes at the next visit, perhaps in a different way, just to confirm.

Six months later Ms. Cook returned to my office for a blood pressure check and a review of her cholesterol test. The former was much the same – still requiring no treatment – and the latter had improved markedly. “I’ve found new ways to tolerate the oatmeal,” she said. “It’s actually grown on me.”

I brought up the question of end-of-life wishes. She had not changed her mind in the slightest. “Nor will I!” she concluded. Six months after that, she was still resolved to avoid life-sustaining technology. And throughout subsequent years her position has remained the same.

As a primary care doctor, I am well-acquainted with sick patients who choose to forgo life support only to change their minds when death comes knocking. With such patients in view, I cannot help but wonder at Ms. Cook’s decision; she is my only “young and healthy” geriatric patient who has signed such an austere living will. And I am sure that if she were to develop a pneumonia requiring intubation and mechanical ventilation, a team of doctors would come clamoring to put a breathing tube down her throat. “She’s so healthy,” they would say, “We can’t just let her die.” But with the benefit of years of relationship with Ms. Cook, I can insist that they stop, and that they let that old man’s friend pneumonia do its work.

Scenarios like this underscore our widespread discomfort with death. It is common for patients to want “everything” done; rare is the patient who willingly succumbs to diseases that for millennia have been escorting the elderly over the threshold. Doctors say they don’t want extreme life support measures for themselves, but they can’t accept that their patients could feel the same way. Decisions not to employ technology in otherwise healthy individuals can be mistaken for hastening death or even killing, and no one wants blood on her hands. And besides, aren’t the goals of medicine ultimately reducible to the fight against death?

For nearly 700 years, Western society embraced an ars moriendi or “art of dying” which was characterized by deliberate preparation for death by individuals and their communities. Preparing to die well was seen as an important aspect of living well. Ultimately, a host of factors combined to bring about the demise of the ars moriendi, and the loss of these practices has resulted in countless tragedies at the contemporary deathbed. The reinvigoration of an art of dying is critical to allowing doctors and patients to achieve a level of mutual understanding about goals for end-of-life care.

How then does one revive an art of dying? The simple answer: talk about death. A more nuanced approach might depend on who you are and how you may be related to end-of-life experiences. As death’s custodians, physicians must talk with their patients about life’s end, well before their patients arrive there. Medicare now pays for an “annual wellness visit” – a comprehensive overview of health prevention – which requires doctors at least to ask if their patients wish to address end-of-life matters. I, for one, have had many fruitful discussions with patients as a result.

Since not all doctors are comfortable talking about death, it becomes important for patients to take the initiative in making their own preparations. This may mean prodding their doctors where appropriate. But it may also mean talking with family members about end-of-life wishes, assigning a health care power of attorney, creating a living will, drawing up a will for one’s estate, ensuring that both spouses’ names are listed on the mortgage, vehicle deed, credit cards, and other financial assets. And as one recently widowed colleague reminded me, “Don’t lose those frequent flyer miles.”

But death invites broader existential questions, and individuals and their community leaders must wrestle through these questions together. In keeping with the ars moriendi tradition, clergy and teachers must engage questions of suffering and brokenness, healing and restoration, purpose and hope. The bedside should once again become a place of restoring relationships and distributing blessing.

Formalizing the living will alone does not guarantee a good death. But preparing for death more comprehensively – while in the company of family, community, and physician – may go a long way toward resurrecting the art of dying well.

Lydia S. Dugdale, M.D., 36, is an assistant professor of medicine at Yale School of Medicine. This story is posted with the permission of her patient.