Finding out what matters most at the end of life
When Ellen Goodman and her mother would speak about end-of-life wishes, it was always in the most general terms. “My mom would see somebody in a terrible condition and she’d say, ‘If I’m ever like that, pull the plug,’” says Goodman.

When Ellen Goodman and her mother would speak about end-of-life wishes, it was always in the most general terms. “My mom would see somebody in a terrible condition and she’d say, ‘If I’m ever like that, pull the plug,’” says Goodman.

It wasn’t until her mom developed dementia in her 90s and her health began declining that Goodman realized it was too late for a more detailed conversation on the topic. “She basically couldn’t decide what she wanted to have for lunch, let alone what she wanted to have for health care,” says Goodman, who went on to make all of the health decisions for her mother, including turning down various unnecessary tests that doctors suggested and medications they offered. “It put a huge amount of stress on me because I was making these decisions and I always wished that I could hear her voice in my ear,” says Goodman.

Looking back, Goodman wishes someone had told her about a specialty of medicine called palliative care, which aims to reduce the pain and stress associated with serious illness or the end of life, while putting the person and his or her wants front and center.

“ We need to change from a death denying culture to one that supports people to live as well as possible with serious illness straight through the end of life. ” Amy Berman, Senior Program Officer, The John A. Hartford Foundation





Amy Berman, a senior program officer with The John A. Hartford Foundation, an organization helping to improve the care of older adults, works to educate people and shift discussions to focus on living well in the face of serious illness and dying with dignity. Her goal is to make an experience like Goodman’s the exception, rather than the rule, when it comes to palliative care. Berman believes that can happen by encouraging people to have conversations early in life with their families and clinicians about their wishes for care. Should they become seriously ill, they would receive care that matches their goals and preferences. In many cases, this means families receive support and health costs are lowered by limiting unwanted medical interventions.

“We need to change from a death denying culture to one that supports people to live as well as possible with serious illness straight through the end of life,” says Berman.

Treating the person, not the disease

People frequently confuse palliative care with hospice, or end-of-life care, says Berman, or they assume that it means someone has given up. That’s simply not the full picture. Palliative care can relieve symptoms and pain and address the stress that comes with serious illnesses such as cancer, congestive heart failure, lung disease, dementia and more. When opting for palliative care, a person will express to palliative doctors, nurses, social care workers and other specialists what he or she wants in life and at the end of that life, and that team can work to create a more dignified, personalized and humane course for the patient and their family. Palliative care can be provided alongside curative care at any stage in a serious illness or towards the end of life.

The John A. Hartford Foundation The John A. Hartford Foundation is a private, nonpartisan philanthropy dedicated to improving the care of older adults. Since 1982, they have awarded $565 million in grants to partner organizations. Learn More

“Palliative care should be viewed as the best friend of the seriously ill,” says Berman. “When it becomes part of care early on, whether somebody is going to get better or live with a chronic condition or at the end of life, the outcomes really shift because it focuses on the whole person, not just the disease.”

In the United States, life expectancy has gotten longer, but with advances in medical treatment, it may also be more painful, filled with medical procedures that go against a person’s own goals. According to the Center to Advance Palliative Care, 90 million Americans are living with serious illnesses — a number that will only rise as the baby boomer generation ages. The Dartmouth Institute for Health Policy and Clinical Practice found that 32 percent of total Medicare spending goes to pay for patients with chronic illness in the last two years of living. They also found that in the last six months of life, people in the United States spend, on average, 7.9 days in the hospital.

32% 32 percent of Medicare spending pays for patients with chronic illness in the last two years of living





Aggressive intervention in the late stages of an illness can bring more harm than good, and no evidence exists that says spending more money on health care and medical procedures results in a better quality of death. In fact, evidence points to the contrary. A study published in the New England Journal of Medicine compared outcomes of newly diagnosed patients with metastatic non-small-cell lung cancer, which is the leading cause of cancer-related death globally. Of the 151 patients, one group received palliative care and the other received standard care. Those who received palliative care reported better quality of life, lower rates of depression and they lived 2.7 months longer than those receiving aggressive treatment.