The Ways We Might Die: Reflecting on the Conversations We Don’t Have
This year, for the first time, Medicare is reimbursing physicians for the time spent discussing patients’ preferences for care at the end of life. For Dr. Larry D. Cripe, a hematologist with expertise in palliative care at Indiana University Melvin and Bren Simon Cancer Center, caring well for people who die is an important part of his commitment to his patients and their families. So we asked him for his thoughts on what the new rule can- and cannot accomplish. Here’s Dr. Cripe’s reflection:
Lori’s mother died in September. Lori and my wife have been close friends since medical school. Lori made many trips back and forth from her home in Washington, D.C. to her mother’s home in Illinois in the weeks between when she was first hospitalized and when she died. She often talked to her mother’s doctors. She talked to her mother and her brothers. She talked with my wife and with me. We shared our opinions and the stories of how our parents died.
When we saw Lori over Thanksgiving she was sad. And, I think it is fair to say, Lori was profoundly ambivalent and disappointed by how her mother died. Was her mother’s illness truly terminal or had they given up too soon? Despite being older with several chronic illnesses, her mother’s doctor had not discussed the outlook before her health declined precipitously. So all were caught off guard. Was her mother really making the right choice when she elected to receive hospice care?
The real goal of the conversations to plan for the end of life is to nurture the relationships between a patient, the patient's family and her doctor necessary to avoid a bad death.
Like so many of us, Lori and her mother had never discussed her feelings about life support and what would be most important to her if she were dying, And then there was the abrupt transition from hospital stays, medications, tests, and numerous consultants to the difficult days in hospice until Lori’s mother died. No one was prepared.
Lori had done the best she could do. Yet she often wonders if she should have done more. Her mother’s death was not a good death.
More than 1,800,000 people 65 years of age or older died last year in the United States. Depending on your perspective the care many received towards the end of their lives was overly burdensome and, perhaps futile. Many suffered unnecessarily. As a consequence on January 1, our country took one small, tentative, but potentially significant step toward providing a good death to more Americans. The goal of the new policy is to clarify what a person wants toward the end of life. We want the perspectives of the people who matter most, the dying.
In reality, dying in America is complicated. Figuring out if a person is at the end of life and how to best care for him requires multiple conversations. The real goal of the conversations to plan for the end of life is to nurture the relationships between a patient, the patient’s family and her doctor necessary to avoid a bad death. I see three reasons why building this relationship is important.
How you die will affect how well your loved ones do when you are gone. What happens after we die is incomprehensible. But we know the different ways we might die and some are rotten. Sometimes when we push too hard—the person gets lost among the heroic technology that breathes the air and pumps blood needs to remain medically alive—and then we discover what might be worse than death. We see how the weeks and months of aggressive medical interventions that potentially sustain life without leading to recovery produce debilitating side-effects and detract from time spent in comfort with family and friends. Most deaths are less dramatic, less traumatic. But it’s worthwhile to imagine the regrets, the emotional trauma, the debt you might leave behind based upon not talking about how you want to die. Think about it as one final gift to your family.
End-of-life decisions are difficult, but conversations can prepare you and ease the burden. People want to avoid two things: unnecessary suffering and premature death. It is very difficult, however, to know when someone is dying from rather than living with a life-threatening disease. After thirty years in practice I suspect there are people who would have lived longer had I not recommended against treatment. And I know many people endured debilitating side-effects because I recommended treatments. As a physician, I try engage the patient’s family in decision-making by asking about their goals if they were dying and how they would prefer to die.
Working with a physician who understands and respects your values will lead to better outcomes at the end of life. During the debates over the Affordable Care Act in 2009 the idea of government funding for end-of-life conversations was criticized, with Sarah Palin saying such a rule would lead to bureaucrats deciding whether or not the sick should receive life-prolonging treatment. Palin’s “death panels” seemed plausible because of a long-standing distrust of the government and the medical profession. You may fear the government will ration care, but the truth is medical treatments are already rationed. That’s why health care providers are obliged to check patients’ insurance benefits. Conversely you may fear the arrogance of a medical profession that adheres to survival at any cost. Most likely you trust your physician. But how would you know? Have you discussed her thoughts and feelings about your care toward the end of your life?
There are no simple answers. But I do see some benefit to the new Medicare rule. Some physicians and patients will take advantage of the opportunity and talk about the ways in which we die. And during the conversations they will learn that making decisions about care at the end of life is a very complex process, and that taking the time once in a while to check in is not that frightening. Most importantly, these conversations provide the chance to cultivate the relationships that just may help the very ill suffer less without risking dying too soon.