Moving towards a culture of care during end-of-life conversations

Americans are waking up to the fact that the $170 billion that Medicare spends on the last six months of life is not helping us die well. Instead, the way we die today tends to be protracted, undignified, and painful. Sarah Palin’s “death panel” debacle temporarily stifled all discussion on the subject, but the silence has been broken by dialogue inspired by the Institute of Medicine’s recent report, Dying in America and Atul Gawande’s book, Being Mortal, among others. Although the majority of Americans want to die comfortably at home, the medical system is programmed to a default setting of aggressive care for the terminally ill.

Many factors contribute to this unhappy ending, including our society’s fear and defiance of death, the allure of new life-sustaining technologies, and doctors’ perceptions of a patient’s death as a failure of care. In the blogosphere, some writers take aim at doctors for ignoring patients’ wishes. Doctors counter by asserting that patients have unrealistic expectations. Rather than finding someone to blame, we need to look at how existing end-of-life policies shape our expectations. We should reform policies that inadvertently contribute to this drive toward overly aggressive care at the end of life.

I interviewed 58 physicians in the United States and United Kingdom for a study in JAMA Internal Medicine, and found that institutional policies and culture influence doctors’ attitudes on patient autonomy. These attitudes affect their willingness to make clinical recommendations regarding do-not-resuscitate (DNR) orders, which withholds cardiopulmonary resuscitation (CPR) at the end of life.

Some hospitals in the U.S. and U.K. have policies that focus on achieving an outcome that is in the patient’s best interest. Frequently this means a process of shared decision-making, in which the patient is the expert on her goals and values, and the physician is the expert on guiding the patient towards clinical interventions that best fulfill those goals.

At other U.S. hospitals, DNR policies focus on promoting patient autonomy. Some states such as New York, have very stringent laws: a physician must administer CPR even if it is deemed medically futile, unless the patient or a surrogate consents to a DNR order. This might mean, for example, giving CPR to a frail 95-year old woman dying from incurable, widespread cancer, where resuscitation would not meaningfully prolong life but would probably prolong suffering.

I found that experienced doctors and palliative care experts were willing to recommend against CPR when resuscitation was unlikely to work. But in hospitals that prioritized autonomy, less experienced physicians such as interns and residents felt obligated to offer patients the choice of CPR even when they believed it would be futile.

They interpreted laws on patient autonomy to mean that they had to neutrally present a full menu of choices and make no recommendations. Interestingly, at hospitals where policies favored decision-making in the patient’s best interest, doctors relatively new to medicine, like their more experienced peers, felt that it was a physician’s responsibility to guide patients and, sometimes, to recommend a DNR order.

Most medical professional organizations, such as the American Medical Association, state that futile therapies should not be offered and physicians should provide recommendations about end-of-life decisions. Yet, I found that a hospital culture that places patient autonomy front and center leads to the belief that doctors should not bias patients by sharing their medical “opinion.”

These policies were based on a well-founded desire to respect patients’ autonomy. However, the policies’ narrow focus appears to have led to un-reflective deference to the concept of autonomy. We must recognize that true autonomy requires not just choice, but the tools and understanding to make an informed choice. We must not deprive patients and surrogates of the professional guidance they need to make these difficult decisions. Offering treatments that won’t work in the name of autonomy does no one any favors.

In our consumer-driven health care environment, the rhetoric of patient empowerment and individual choice has trumped an ethos of humanism and compassionate care. An unwavering dedication to choice guarantees neither positive outcomes nor patient satisfaction. Instead, it abandons patients at their time of greatest need. Patients and families facing the most trying times of their lives are given a bewildering array of choices without the tools and advice to make the best decision. Hospitals that have fully embraced this ideology of choice might inadvertently be training young doctors to withdraw from their professional obligation to first, do no harm.

We should never go back to the “doctor knows best” attitudes of years past. However, physicians should not forget that it is our responsibility to use our expertise and experience to guide patients to the best decision. One way to help patients achieve the good death that most of us hope for, is to reform hospital policies and the laws that shape them. The public may be better served by state laws and policies that allow for more shared decision-making. By making these changes, we can start shifting the current culture of choice to one of care and compassion.

Elizabeth Dzeng is a general internal medicine fellow and can be followed on Twitter @LizDzeng and on her self-titled site, Elizabeth Dzeng, MD, MPH.

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