August 25, 2021
A study shows older adults aren’t getting the care they want at life’s end
— By Laine Bergeson for Next Avenue | Photo by Thinkstock —
A new poll shows that almost one in four older Americans — approximately 25 million people — experience excessive or unwanted medical treatment. This is especially true in the last year and very last days of life.
During their final 24 to 48 hours, many terminally ill patients go to the hospital and receive treatments that don’t improve quality of life, says Daniel Wilson, national and federal programs director for Compassion & Choices, a nonprofit end-of-life advocacy organization. In fact, a person’s last days in the hospital are often “more traumatic than peaceful,” he says.
Why, when 70 percent of us say we want to die at home, are we so often dying in the hospital? Several factors are driving the trend. A main issue is cultural discomfort with death and dying. “In America, we avoid these conversations,” says Wilson.
A Need to Start Talking
A 2012 survey conducted by the California HealthCare Foundation found that 60 percent of respondents feel it is “extremely important” that their families not be burdened by tough decisions about their end of life care. Yet, 56 percent of those surveyed had not communicated their end-of-life wishes with their families.
Anxiety about death also keeps people from talking openly with their doctors, leaving patients with incomplete or false information about many palliative care and end-of-life alternatives that would keep them out of the hospital in their last days.
“This is your body, your health,” says Wilson. “You need to have the comfort level with your doctor.” If you don’t feel comfortable asking questions and having these types of conversations with your healthcare practitioner, he says, it might be time to find a new one.
Some doctors also find it difficult to start these conversations. It can be challenging, admits Wilson: “They look at a frail 89-year-old with no family and wonder how they are going to say, ‘You’re going to die.’”
Even when doctors are forthright, people “hear what they want to hear,” says Wilson. Overwhelmed by anxiety and grief, many patients and families simply refuse to accept a terminal diagnosis.
Thirty-eight percent of doctors, however, feel comfortable making end of life decisions without consulting the family at all, a new study published in the Journal of Trauma and Acute Care Surgery revealed.
This is directly at odds with patient wishes and perception: The Compassion & Choices poll found that most patients are very confident their families and doctors will honor their medical wishes (though fewer than half have the same faith in emergency rooms, intensive care units, nursing homes and assisted living facilities). A striking 95 percent of respondents said it is important for healthcare providers to respect end-of-life medical wishes.
All people deserve the right to have their end-of-life wishes appreciated and respected, adds Wilson. “Twenty-five million Americans receiving excessive or unwanted medical treatment is 25 million Americans too many,” he says.
How to Protect Yourself (Or a Loved One) Against Excessive Medical Treatment
Here’s how to empower yourself and advocate for your rights and wishes at the end of life:
Have the conversation
When Pulitzer-prize winning writer Ellen Goodman sat beside her dying mother, she realized they’d never talked about end-of-life wishes. Her mom already had dementia, making an honest and lucid conversation about end-of-life impossible. But it wasn’t too late for others, Goodman realized. So she launched The Conversation Project, where Goodman offers valuable information, advice and resources on how to start these difficult conversations with loved ones.
If you don’t have family, talk with a trusted friend. Seek out someone you trust at your community center, church, synagogue, or on your block. Visit the Compassion & Choices website for resources on communicating your wishes, advanced planning, writing advanced directives and getting end-of-life consultations.
Find a doctor you trust
Get one who you feel comfortable with, will answer all your questions and talk openly with you about end-of-life choices, says Wilson.
When making choices about medical treatment, whether aggressive or less intrusive, ask key questions before making the decision. Questions like: What are the possible side effects of this treatment? How will I feel after this treatment? How will the procedure and recovery affect my quality of life? How long will I be in the hospital?
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