It’s time for Americans to start thinking about how they wish to die

July 4, 2014
July 4, 2014

The default, if unconscious assumption when you fall ill and are admitted into a hospital is that the doctors will give you the best possible care—that they would do unto you what they would want to have done to themselves. We’d like to think this is true but a new study reveals an area of hypocrisy: a startlingly high percentage of doctors, 88.3% it turns out, do not want high intensity, invasive care at the end of their lives even though they provide such care to their patients.

Indeed, many of them jokingly talk about having “DNR” (Do No Resuscitate) tattooed on their chest, according to Vyjeyanthi S. Periyakoil of the Stanford School of Medicine who is the lead author of the study, “Do Unto Others: Doctors’ Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives” published in May in PLOS.

The study raises questions about why medical practitioners make such persistent efforts to prolong the life of hopelessly and critically ill patients while choosing to avoid such a circumstance for themselves. Medical practitioners acknowledge that most aging and critically-ill patients do not want aggressive treatments. Indeed, the Dartmouth Atlas of Health Care indicates that 80% of patients wish to avoid hospitalization at the end of their lives. Yet, in the crisis of the moment, or in the momentum of care that is delivered at ICUs, doctors overrule patient desires when they attempt to save their lives. They subject their terminally ill patients to ventilators, intravenous fluids, tracheostomies, and other procedures that erode the quality of life and personal dignity.

Twenty-five years ago, the Patient Self-determination Act was passed by Congress to help the elderly and medically ill determine what kind of treatments and procedures they wished to allow, or avoid, when they became ill. Also called advance directives or living will, the protocol nudged people into thinking about the level of invasive care they were willing to tolerate if they were to become terminally ill.

The act spawned a cottage industry that sought to help people come up with legal documents that combined a living will with a durable power of attorney. Although it differs by state, today most hospitals are mandated to help elderly and/or terminally ill patients sign advance directives as part of the hospital admission procedure. But hospitals aren’t mandated to follow these directives; therefore, patients don’t necessarily receive the kind of care they want.

The problem often begins at home before aging or terminally ill patients enter the hospital. Surveys by the California Health Foundation show that, while 70%-80% of Americans want to die at home, less than one third of people have talked to a loved one about how they wish to die. Fewer still have actually thought about and written down advance directives. Most terminally ill patients want palliative care that focuses on comfort and dignity, rather than invasive, aggressive treatments. Without prior consideration, in the absence of a pre-written living will, patients are forced to come up with advance directives while admitted into hospitals. The 15 minutes they spend with doctors during this process does not provide enough time to chalk out a treatment plan when things get worse.

As America ages, conversations about how we live; how long we live; and how we die are becoming increasingly (and painfully) resonant in many families. Many of us are caring for octogenarian and older parents, in-laws, aunts and uncles who are physically disabled and some who are terminally ill. The situation is only going to escalate: According to a report from the US Census Bureau, the number of Americans aged 90 and older has nearly tripled since 1980, reaching 1.9 million in 2010 and growing to more than 7.6 million over the next 40 years. This “silver tsunami” of older adults is the largest public health challenge facing society today.

The first order of business, many feel, is to actually get the elderly to make up a living will. The nonprofit organization, Aging with Dignity came up with Five Wishes, a program that helps people make detailed and tough choices about how they wish to be treated at the end of their lives: how long they wished to be sustained if they went into a coma; whether they wished to be on life support; whether they wish to be resuscitated; the level of pain medication they wanted; whether they wanted a cold moist cloth put on their foreheads if they had a fever; whether they wished to be held or not; whether they wanted someone praying by their bedside or not.

Websites such as Mydirectives do the same thing and help people formalize their choices into a legal document. The fundamental question all these documents ask is one we’re afraid to ask: how do you wish to die?

Hardly anyone wishes to die in a hospital. “It takes the heart out of dying,” as Periyakoil said in an interview with 1:2:1 podcast from the Stanford School of Medicine, “the organ becomes more important than the individual.”

However, hospitalization has become the first and default choice in our society. Today, hospices or palliative care is often the last resort because of the number of sub-specialists involved and the fragmented nature of healthcare. This may change, given rising healthcare costs. According to the Dartmouth Atlas of Healthcare, “older Americans account for an estimated 32% of the total Medicare spending on costs related to repeated hospitalizations in the last two years of their life and higher spending has not been associated with better health outcomes.”

As Arnold Relman’s poignant article, “On breaking one’s neck,” points out, hospitals are very good at not allowing people to die. What they don’t do as well is addressing questions of personal dignity and patient comfort. Doctors too, are squeamish about death and dying; and are often uncomfortable about discussing these issues with patients. Indeed, as Benjamin W. Corn writes, most doctors are not emotionally equipped to confront such questions, preferring to act and direct rather than sit and listen. Perhaps the time has come to cease playing ostrich and think about the patient’s quality of death in addition to his quality of life.

Follow Shoba on Twitter @ShobaNarayan. We welcome your comments at ideas@qz.com.

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