4 reasons why hospice care is not what you think

Most people who enter hospice care in the U.S. spend less than two weeks receiving that care — despite the fact that free, six-month hospice care is available.

“Average hospice care is 10 to 14 days,” said Steve Cone, chief of communications, marketing and philanthropy at the nonprofit Capital Caring Health, one of the original two hospice providers in the country.

That’s not only too short, it’s tragic, Cone said during an interview with WTOP. That’s because the Medicare Hospice Benefit provides access to free care for patients diagnosed as terminally ill.

“There’s this perception that hospice is for the very last minute, when someone is really about to die,” said Audrey Easaw, executive director of Capital Caring Health’s Center for Health Equity.

WTOP talked to Cone, Easaw and others on the Capital Caring Health team to understand why people don’t take advantage of this care but, more important, to share why they should and benefits that come from spending more than two weeks in hospice care.

“What we’re trying to do is to break down those barriers, those obstacles that are for some reason causing people, especially in communities of color, to resist the hospice benefit,” Easaw said. “We’re working with partners. We’re working with faith-based leaders to understand what are some of those underlying issues. And we are finding that there is a lack of trust with health care providers. We are also finding that there are some cultural issues.”

No. 1: Why hospice should not wait until end of life

A major misconception is that hospice care happens in a hospital. It’s homecare so that people can spend time with their families, Cone said. Locally and across the country, 98% of hospice care is provided in patients’ homes.

“It’s just a terrible tragedy that people don’t take advantage of the months of care, where the patient will be comfortable and happy in their home setting, not having to be rushed to the hospital, having lots of memories exchanged with family and friends, a much better life for the last few months of life,” he said, adding that it’s “much better than the alternative of not using hospice care until the last minute.”

No. 2: Why hospice is holistic comfort not an immediate death sentence

What’s critical to know is that hospice care is about improving experiences for the patient, not medicating them so they’re nonresponsive and unaware of their surroundings, said Dr. Matt Kestenbaum, chief medical officer at Capital Caring Health.

“There is a big fear about pain medications and that it can shorten life,” he said. “And the reality is, in studies, we know that when pain medication is used properly, by skilled professionals, it doesn’t shorten life. … People who have their pain and other symptoms controlled well can actually live longer.”

Hospice care focuses on all aspects of the patients and their families. Patients have dedicated hospice care teams that include a doctor, nurses, social workers, pastoral counselors, home health aides, bereavement counselors and other volunteers, Kestenbaum explained.

“It’s not just living longer — in some studies as much as 29 days,” he said. “It’s not just the time. It’s that the time is better spent. The time has better quality. They feel better. Their symptoms are better controlled. They’re emotionally better controlled.”

To understand more about holistic care during hospice, watch the WTOP interview with Dr. Matt Kestenbaum now.

No. 3: Why hospice gives time and more back to caregivers and family

Hospice care is patient-centric. But to provide the best experience for a patient, hospice must include the patient’s caregivers and family too, said Capital Caring Health CEO and President Tom Koutsoumpas.

“The needs of the family members, the support of the family members, both emotionally as well as physically, is really a critical part of what we do and how we think,” he said.

That support can include helping financially, helping with care and prescription needs, providing grief counseling and even offering pet care. Ultimately, the goal is to take the “burden away from the caregiver, so their focus can really be on their loved one,” Koutsoumpas said.

To learn more about how hospice care also includes support to the family and caregivers, watch the WTOP interview with Tom Koutsoumpas now.

No. 4: Why hospice lets you take back quality of life versus give into death

Each patient is unique, so each care plan must be unique, said Lin Maurano, chief of clinical operations at Capital Caring Health.

It’s not focused solely on the death of the terminally ill patient, though it can and will include the details shared by the patient about how they wish to die, she said. But really, the care plan is about how the patient wants to live and spend those last months and days — the things they want to do and the things they do not, she said. “We make sure we honor those as much as we possibly can.”

“They’re getting this unique care in their home by this team of professionals who have made this their livelihood,” Maurano said.

To discover more about the hospice teams and how they care for each patient, watch the WTOP interview with Lin Maurano now.

By entering hospice far sooner than two weeks before death — hopefully six months, Easaw said — patients and their families have the chance for many more pleasant memories. But that’s only possible if people understand hospice better, she said.

Cone summed it up succinctly: “It’s a whole lifestyle of care. And it’s a shame that we hear so often, ‘Gosh, if we had only known sooner.’ ”

Facts about hospice care in the DMV and beyond
  • 70% of people living in the U.S. don’t understand hospice care is free for six months or more.
  • 83% of people who take part in hospice care are Caucasian, 8% are Black, 6.4% are Hispanic, and 2% are Asian.
  • Hospice care for family members continues for 13 months after a patient’s death.

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