‘What Are My Chances?’ Crucial Conversations at the End of Life

In his best-selling book, Being Mortal: Illness, Medicine, and What Matters in the End,¹ Atul Gawande, MD, MPH, makes frequent references to Leo Tolstoy’s famous 1886 novella, The Death of Ivan Ilych.² Tolstoy’s story takes place at the end of the 19th century, in Saint Petersburg, Russia, where the title character works as a magistrate. Ilych strives to live a pleasant, proper, and conventional life, with little concern for the well-being of others. Like his colleagues, Ilych is socially and professionally ambitious. His life moves pleasantly along until he develops a mysterious, deadly illness. Soon he is the subject of intense medical interest. His physicians are perplexed by his symptoms and clinical presentation. Although they make home visits and do frequent physical examinations, the physicians are emotionally detached from their patient. They also are uncomfortable speaking the truth to Ilych. This is unfortunate, because Ilych desperately wants his doctors and family to stop pretending that he is not dying. He wants them to care about him as a person, one who has significant physical, emotional, social, and spiritual needs.

If Ilych’s dilemma sounds familiar more than 100 years later, it should: Many patients now find themselves in similar situations. Even though we have more diagnostic and therapeutic tools to help patients like Ilych, the same questions occur to patients and physicians today: What are the goals of care? Is it worth doing more tests, more procedures, and more treatments? Who decides whether it’s worth it—patients, families, or doctors? If the goal becomes strictly palliative, who can be trusted to help a person achieve a good death?

Why Are End-of-Life Talks So Hard?

Many physicians are uncomfortable having conversations with patients and families about these questions. In the fall of 2014, the Institute of Medicine released a detailed report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.³ In the report, the expert committee of authors makes many recommendations to clinicians, public policy makers, educators, and payers. The authors note a worrisome pattern in the education of health professionals, particularly physicians: “[T]he lack of attention to developing clinicians’ ability to talk effectively to patients about dying and teaching them to take the time to truly listen to patients’ expression of their concerns, values, and goals.”

There are other reasons for why physicians avoid advance care planning and end-of-life conversations. They are time-consuming. They are poorly reimbursed. Few primary care physicians follow their patients’ cases in the hospital. This is unfortunate, because hospitalist physicians usually are less familiar with a patient’s long-held values, beliefs, and preferences.

In a recent New England Journal of Medicine article,⁴ Diane E. Meier, MD, adds to the critique: “In an ideal world, every clinician … would have the training and the team support to care for their patients throughout the course of their illness, especially during its most difficult and challenging phases. Most primary care clinicians and specialists don’t have time to manage complex symptoms, as well as emotional, practical, spiritual, and family needs, amid the escalating productivity requirements characterizing medical practice in the United States.”

There is another obstacle: If physicians broach the subject of end-of-life care, it sometimes is perceived that they are giving up on the patient. When they do bring up the topic, it’s often difficult for them to provide accurate prognoses. As Dr Gawande notes, “Given the diagnostic, medical, and surgical tools available to physicians today, it’s often hard to know when patients are really dying, ‘exactly.’ There are always new therapies to consider, which give hope to desperate patients. Most physicians can recount stories about patients who defied the odds and recovered. Finally, there are legal and financial incentives for physicians to do more.”¹

‘What Are My Chances?’ The Case of Ms Y

Consider the case of Ms Y. She is a 67-year-old woman with severe chronic obstructive pulmonary disease (COPD). She has been hospitalized many times for COPD exacerbations. Last month, she spent 5 days on a mechanical ventilator. She is oxygen-dependent and uses a wheelchair to get around her apartment. She lives with her daughter, who helps her with bathing, transfers, and dressing.

Ms Y is in my office today. I decide to readdress the goals of care with her. Before speaking, I wait for her to stop coughing. I notice her hair is in a bun, and her skin looks paler than I remember. She purses her lips to breathe.

“Ms Y, I know you had a rough time in the hospital last month,” I say. “That must have been very difficult for you. Do you feel like talking about that experience today?”

She turns away from me and slowly crosses her arms.

“Not really, doc. It’s behind me now. I’ve recovered, mostly. I’m weak, of course, and I get tired more easily,” she replies.

“Well, I was wondering whether it might be useful to talk about what your goals of care are and whether they’ve changed since we last talked. You know—what you would want me to do for you if your lung condition worsens. Can we talk about that?”

“I want to live, Dr G, if that’s what you’re asking.”

“So does that mean you’re okay going back on a ventilator if it’s needed to keep you alive?”

“I don’t know, doc. What do you think about that? I mean, what are my chances?”

Shared Decision-Making Is Key

Justin Sanders, MD, writes about finding the right words at the right time, what he calls high-value advance care planning.⁵ He makes the point that patients like Ms Y—patients with advanced cardiac, pulmonary, or renal disease—are the proper patients with whom to have end-of-life care discussions. “Asking a physician, ‘Would you be surprised if this patient died in the next year?’—the so-called surprise question—is highly predictive of a poor prognosis in patients with cancer or end-stage renal failure and thus may serve as an appropriate trigger for [advance care planning],” Sanders writes.

These patients have life-limiting illnesses and are at greatest risk of losing their decision-making capacity. It’s difficult for healthy, young patients to imagine end-of-life scenarios. They resemble Ilych before he gets sick—they ignore or deny the possibility of illness and death. Disease and death happen to other people.

Debate is ongoing about whether physicians should make specific recommendations to patients or their surrogates regarding the goals of care. Robert M. Veatch, PhD, argues strongly against it, stating that physicians do not know what is best for patients.⁶ It’s up to patients or their surrogates to make these decisions, he says. According to Dr Veatch, physicians should provide only medical information.

Paul J. Hutchison, MD, makes an alternative case for shared decision-making⁷:

“For treatment decisions at the end of life, medical facts and a patient’s values and preferences are so intimately entwined that the responsibility to integrate the two falls on both the surrogate and the physician,” Dr Hutchison writes. “The physician’s recommendation is the means by which the physician communicates his clinical judgment that has been shaped by years of education, apprenticeship, and independent practice. Without a recommendation, the decision is not truly ‘shared.’”

I believe Dr Hutchison has it right. In the example here, Ms Y and I are engaged in a “crucial conversation”: A conversation characterized by high stakes, potentially opposing viewpoints, and high emotion.⁸ The goal of the conversation is to delineate the goals of care for Ms Y. We contribute to a pool of shared meaning: her values, goals, and preferences; my medical knowledge and experience. We come to a decision together.

It's a dialogue. I want to emphasize that. She cannot make intelligent decisions without accurate information from me. But it’s more than information sharing. I share my opinions and experiences to help her make the decision that is best for her. I help her to make decisions that are consistent with her values and preferences. My job is to make it safe and easy for her to share her feelings and preferences. This will happen only if she trusts me to keep her interests ahead of my own.

The Art of Crucial Conversations

When Ms Y asks me, “What are my chances?” What exactly is she asking? Her chances for full recovery? Her chances of returning to her present condition? Her chances of getting off the ventilator next time? I cannot give her certainty regarding any of these questions. At best, I can give her educated opinions based on medical evidence and my experience. In the end, if I slant my answers in an optimistic way, she will make one decision; if I emphasize the burdens, she probably will make a different decision. Being hopeful and truthful, that is the challenge. The way I carry on the conversation, with empathy, attentive presence, and concern for what is best for her, ultimately will determine whether she trusts the recommendations I share with her.

Crucial conversations at the end of life take time, skill, and practice to get right. They are conversations that occur over time with a trusted physician. One conversation usually is insufficient. It took Ms Y several intubations before she changed her mind and asked for hospice care. Throughout her long medical journey, I supported the decisions she made, whether I agreed with them or not. She died at home with friends and family at her bedside, a good death as defined by her.

The course of Ms Y’s illness and death illustrate that “[d]ying rarely lends itself to workarounds. It is a messy, nuanced, unpredictable, deeply human, labor-intensive ordeal, and for most of us, it will always be so. It may involve suffering and take time. We need to get honest about this.”⁹ 

Dean Gianakos, MD, is the director of medical student education at the Centra Lynchburg Family Medicine Residency and Geriatrics Fellowship in Lynchburg, Virginia.

References:

1. Gawande A. Being Mortal: Illness, Medicine, and What Matters in the End. New York, NY: Metropolitan Books; 2014.
2. Tolstoy L. The Death of Ivan Ilych and Other Stories. Pevear R, Volokhonsky L, trans. New York, NY: Alfred A. Knopf; 2009.
3. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2014:13.
4. Tolle SW, Back AL, Meier DE. Clinical decisions: end-of-life advance directive. N Engl J Med. 2015;372(7):667-670.
5. Sanders J. Finding the right words at the right time—high-value advance care planning. N Engl J Med. 2015;372(7):598-599.
6. Veatch RM. Counterpoint: do physicians have a responsibility to provide recommendations regarding goals of care to surrogates of dying patients in the ICU? No. Chest. 2015;147(6):1455-1457.
7. Hutchison PJ. Point: do physicians have a responsibility to provide recommendations regarding goals of care to surrogates of dying patients in the ICU? Yes. Chest. 2015;147(6):1453-1455.
8. Patterson K, Grenny J, McMillan R, Switzler A. Crucial Conversations: Tools for Talking When Stakes Are High. 2nd ed. New York, NY: McGraw-Hill; 2012.
9. Butler K. Aid-in-dying laws are just a start. New York Times. July 12, 2015:SR2. http://opinionator.blogs.nytimes.com/2015/07/11/aid-in-dying-laws-are-just-a-start/. Accessed December 8, 2015.