Doctors, patients need to discuss end-of-life issues

By Amy Tucci

A recent survey of physicians underscores the challenges they face when attempting to talk with patients about end-of-life care issues.

While most doctors agree it’s important to talk with their patients about the care they want in their final days, almost half did not know what to say or when to raise the topic. Supported by The John A. Hartford Foundation, the survey found that only 29 percent reported having had any formal training specifically on talking with patients and their families about end-of-life care.

Such discussions are becoming increasingly important as baby boomers reach their golden years. By 2030, an estimated 72 million Americans will be 65 or over, nearly one-fifth of the U.S. population. Because of advances in medicine and other factors, all of us are likely to face decisions about the dying process.

Fortunately, efforts are being made on several fronts to foster conversations between doctors and patients on this sensitive topic. As of Jan. 1, Medicare began reimbursing physicians to discuss end-of-life care during office visits or in hospitals. Doctors are now paid to explain hospice, living wills, do-not-resuscitate orders and other advance care planning issues.

The recent rebroadcast of the “Frontline” episode “Being Mortal” on PBS stations nationwide helped reinforce the importance of doctors having these discussions with patients who are nearing end of life. The documentary, based on the best-selling book by physician Atul Gawande, follows Dr. Gawande as he thinks about death and dying in the context of being a healer.

The renowned writer and Boston surgeon shares stories about experiences at the end of life from patients and his own family.

Hospice Foundation of America (HFA) is using “Being Mortal” as the centerpiece of a national, year-long public awareness campaign on the importance of talking about end-of-life care wishes with both family and medical professionals. With support from the John and Wauna Harman Foundation, HFA is spearheading the screening of “Being Mortal” in more than 300 communities nationwide. With audiences that include the public and clinicians, to goal is to spark reflection and discussion about the need for these critically important conversations.

HFA’s campaign is helping participants take concrete steps to identify and communicate their end-of-life preferences and goals. In communities that have held screenings so far, surveys found that after seeing the film and participating in a discussion, more than 95 percent of respondents would now act to decide who would make health care decisions for them if they’re unable to speak for themselves (95.5 percent), talk to a loved one about their end-of-life care preferences (96.3 percent), consider putting their end-of-life care wishes in writing (96.8 percent), and think about the care they’d want if they were seriously ill or dying (97.3 percent).

Even Congress is taking notice of this emerging issue. U.S. Sens. Susan Collins, R-Maine, and Sheldon Whitehouse, D-Rhode Island, held a hearing recently to provide insight into models of care that empower patients to make treatment decisions that align with their end-of-life preferences and goals. The hearing came on the heels of a star-studded event hosted by the National Hospice and Palliative Care Organization for Capitol Hill’s legislative community to hear about HFA’s “Being Mortal” campaign from Dr. Gawande and country singer Rory Feek.

This growing chorus of voices has helped create a greater awareness of the need for these meaningful conversations between individuals and families and between patients and physicians. Having these talks will help make shared decision-making easier for patients and families, especially when patients can no longer participate in the discussion.

It’s time for doctors and patients to expand their conversations to include not only how to live a healthy life, but also how to die a better death.

Amy Tucci is president and CEO of Hospice Foundation of America.