End-of-Life Choice, Palliative Care and Counseling

Posts TaggedICU

Facing Death? Frontline Shows Who Will and Will Not

Last week the Dartmouth Atlas Project released startling information about how many Americans with end-stage cancer die in intensive care units and acute care hospitals, with all the attendant invasive procedures, family isolation and suffering that implies. About one third, as it turns out. Too many, considering almost everyone’s stated preference is to die at home.

The Project’s other revelation was astronomical variation by location . People dying of cancer in New York City are seven times more likely to end their days tethered to tubes, probes and machines than those dying of the same diseases in Iowa City. Seven times. The cancer patients in New York don’t live longer than those in Iowa City. It’s just that technology and agony are more likely to dominate their last days.

Tonight, the PBS show Frontline illuminates the Dartmouth data with a bedside view of the New York style of end-of-life care. Called “Facing Death: Families make end-of-life choices” it offers examples of physicians, patients and families who do face death honestly and others who studiously avoid facing it. I encourage those who want to understand how current medical practice fails patients at the end of life, and glimpse avenues toward hope, to watch the Frontline documentary with these questions in mind:

  • Several doctors are highlighted, working with patients and talking to us about their experience and philosophy. Which doctors seem to center their work and perspectives on patients? Which focus on procedures and symptoms?
  • Where does effective, clear communication among doctors, patients and families appear? Are some communication styles ineffective?
  • Among all the patients, families and physicians portrayed, who acknowledge death is approaching?
  • Who initiates discussion of the quality of the patient’s remaining days? Who stops the discussion by changing the subject?
  • Who speaks with a clear and forthright voice about a patient’s situation, needs and desires? Who blurs their statements with phrases like “I’m not sure . . . .?”
  • When do doctors present full information about options – potential harms and benefits – and allow patients to make explicit informed choices?

Will the medical profession – particularly those in New York – be affected by this Frontline documentary? Will it spur medical educators to develop classes on how to talk meaningfully with people nearing the end of life? Young doctors need to learn to ask more open-ended questions, take more time to find out what is on people’s minds and be more honest about what to expect from the treatments they offer. It should persuade acute care physicians to enlist chaplains, psychologists or others prepared to support patients and families through the grief of impending death, if they cannot do it themselves.

“Facing Death” should spur everyone to work hard to extract a candid assessment of any treatment’s chance for success. We should prepare our loved ones with knowledge of our beliefs, attitudes and preferences. Sadly, most of the physicians shown here do not work from a model with their patients at the center, and few communicate in a style that gives full and frank information and solicits patient input. Until they change, patients and families must themselves face an approaching death and drive the discussion of end-of-life choices.

60 Minutes Highlights Problem of Americans “Dying Badly”

Wishing to be at home, still millions die in Intensive Care Units

CBS News will broadcast a story this Sunday, Nov. 22, at 7 p.m. ET/PT on dying in America. Compassion & Choices, the nation’s oldest and largest nonprofit working to expand end-of-life care and choice, today applauded the effort to highlight how many Americans meet death in contradiction to their values, beliefs and stated desires, but disagrees with the focus on cost.

“Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse,” says Dr. Ira Byock in the broadcast. “Most generally, it’s having someone you love die badly – dying, suffering, dying connected to machines.” Byock heads the palliative care program at Dartmouth-Hitchcock Medical Center in Lebanon, N.H.

“Much end-of-life care merely prolongs a miserable dying process,” said Barbara Coombs Lee, president of Compassion and Choices. “As individuals face the end of life, and try to navigate the health care system, their own values and choices should be paramount. We know the greatest tragedy is the human cost, not the monetary cost.”

The story of Margaret Furlong demonstrates how badly end-of-life care can stray from patient wishes. Margaret entered the hospital with an advance directive, stating she was not to receive CPR or extraordinary efforts to keep her alive. Suffering from ulcers on her shoulder and hip, she was in constant pain. The hospital had Furlong’s advance directive, but mistakenly believed she wanted every effort to keep her alive.

Margaret suffered cardiac arrested and was put on a mechanical ventilator and transferred to the ICU. Hospital personnel inserted tubes into her mouth and down her throat to her lungs, up her nostrils, into her bladder and into her veins. She was tied to her bed to keep her from pulling all these many tubes from her body. She lived for 10 more days in extreme pain.

“Stories like Margaret’s remain common across the nation,” said Coombs Lee. “Too many people die in pain. Too many suffer needlessly. Too many linger in distress, tied down and attached to tubes and machines as their advance directives go unheeded. Our nation can do better and we must do better.”

Compassion & Choices is a national organization serving patients and their families, advocating for expanding legal end-of-life choices, and educating the public. Our experts are available for interviews.

Individuals seeking information about end-of-life decisions can access our End-of-Life Consultation service at no cost by calling 1-800-247-7421.