How to Prevent a Real-Life Nightmare at Life’s End

A Next Avenue Influencer in Aging urges conversations around death

Editor’s note: This article is part of Next Avenue’s 2015 Influencers in Aging project honoring 50 people changing how we age and think about aging. 

To my everlasting shame, this boomer spent many of her formative years as an ICU nurse, thoughtlessly pushing tubes down the noses and pounding on chests of dying patients, torturing them with electric shocks, instead of allowing death to come peacefully.

The tragic reality is people who do not communicate their values and priorities for end-of-life care often pay dearly for this failure, by enduring futile, agonizing tests and treatments that only prolong the dying process. It is equally important for people to empower a loved one in writing to be their decision-maker if they are unable to speak for themselves.

Unfortunately, only one out of six Americans (17 percent) say they’ve had advance care planning conversations with a doctor or other health care provider, according to a recent Kaiser Health Tracking poll. This figure is a huge red flag for boomers, and their parents, who may not have had these conversations.

Changing the Conversation

Knowledge of a person’s values and priorities is often crucially important. In fact, the Institute of Medicine‘s 2014 Dying in America report concluded:

“Most people nearing the end of life are not physically, mentally or cognitively able to make their own decisions about care … The majority of these patients will receive acute hospital care from physicians who do not know them. As a result, advance care planning is essential to ensure that patients receive care reflecting their values, goals and preferences.”

The day you need to consider end-of-life options is no time to discover your doctor's values and beliefs don't match your own.

One positive development to facilitate advance care planning is the recent decision by the Centers for Medicare & Medicaid Services (CMS) to reimburse doctors, starting in January, for conversations about priorities in the setting of advanced illness with their Medicare patients.

This is great news for millions of boomers who already are enrolled in Medicare. But what about the millions of boomers who are not old enough to qualify for Medicare?

At the organization I lead, Compassion & Choices, our mission is to advocate for policies to improve care and expand choice at the end of life. That’s why we urge adults of all ages to interview their physician. The day you need to consider end-of-life options is no time to discover your doctor’s values and beliefs don’t match your own. You might like some clues now about what your physician’s approach may be. What kind of questions would engage your doctor as your ally?

Questions for Your Physician

I recommend starting with a positive, upbeat declaration that you feel healthy, you love life and you intend to savor its fullness as long as humanly possible. But you also believe in preparedness, and you’d like to make sure your physician and you would be on the same wavelength in an end-of-life situation. Try one of these questions:

  • If I had an illness that looked pretty grim, how would you feel if I wanted to pass on the heroics and let nature take its course?
  • I wouldn’t want my family fighting over keeping me alive if I had little chance to recover a good life quality. How would you handle a situation like that?
  • What if I were dying and really struggling with pain or other agonies? Would you prescribe enough pain medication and sedatives to keep me comfortable, even if it meant my life might be a little shorter?

Above all, value humility in your physician. Find a doctor who utters the words, “You are in charge,” and you’ve found true gold.

By Barbara Coombs Lee
Barbara Coombs Lee serves as the longtime president of the nonprofit Compassion & Choices, which according to its website, is “committed to helping everyone have the best death possible.” Coombs Lee and her organization work to lessen the suffering of the terminally ill and give them control in their last days. They offer free consultation, resources for planning and referrals. They also advocate on the state and national level for right-to-die legislation and laws to ensure people receive full information and access to end-of-life care options, including the choice to refuse care. Coombs Lee previously spent 25 years as a nurse practitioner and physician assistant, often caring for dying patients. She then became an attorney and worked in health policy, advocating for personal choice in health care. She co-authored the Oregon Death with Dignity bill and served as a senior adviser for the Washington state Death with Dignity ballot initiative.

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