A new study published this week in the New England Journal of Medicine shows that more Americans are dying at home than in the hospital — the first time that’s happened since the early 20th century. In 2017, 29.8% of natural deaths occurred in hospitals, compared to 30.7% at home.

The report is the latest evidence that our views on what constitutes a “good death” are shifting.

The study’s authors, Sarah H. Cross, M.S.W., M.P.H. and Haider J. Warraich, M.D., say their findings are encouraging, but warn there’s a darker side.

Writing in STAT, the researchers note that the current hospice model is not able to provide the level of care every patient requires, and families are unprepared to care for the seriously ill. “Given the rising number of people dying at home, ensuring the availability of services to support them and their caregivers is a matter of urgency.”

“Lifting the veil”

Atul Gawande, surgeon and author of Being Mortal, talked about the shift towards hospice care in a 2016 interview:

“When I grew up, everybody died in the hospital. You know, I’d never seen anybody who’d died until I was in medical school. Now, each of my kids has been in the home of somebody who was on hospice, because it was a mother of a family member or my daughter’s piano teacher or those kinds of circumstances. And suddenly, that makes it feel much more normal, that it’s part of life. In that sense, we’re lifting the veil.”

As Gawande explained in The New Yorker, the difference between medical care and hospice is about priorities. “In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now — by performing surgery, providing chemotherapy, putting you in intensive care — for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now.”

Finding quality hospice caregivers

If you’re looking for hospice services for a loved one, be alert to anyone offering extra caregiving or pain management services without using the word hospice or explaining hospice rules. 

“We need a new movement, one that embraces the best of what hospice pioneers envisioned but that also adapts to the reality of modern health care and society.”
–Sarah H. Cross, M.S.W., M.P.H. and Haider J. Warraich, M.D.

As Walecia Konrad wrote for Considerable earlier this year, you should also check on the following:

What services are offered. Quality hospice should offer, at minimum, 24-hour on-call service, in-person visits, medical equipment, related medications, inpatient care to manage acute bouts of pain, and continuous care in the home.

The most recent satisfaction survey. Most hospice facilities conduct satisfaction surveys. Ask to see this data. You’ll get a sense right away of how well the program is functioning. 

Accreditation. Any hospice you are considering should be approved as a Medicare provider. In addition look for extra accreditations from NHPCO and other industry organizations. 

The 24 hour on-call service. Even if the facility says they provide it, you need to dig deeper. One of the most common complaints concerns patients and caregivers who needed help during an acute episode. But no one from hospice showed up, leaving both the patient and caregiver in a panic. That’s exactly the scenario hospice is designed to avoid. 

So ask: Does the hospice guarantee calling back within a certain amount of time? Ask how many people are on call during the daytime, evening, night and weekends. Is there’s a back-up person or people to cover when assigned staff is busy?

Improving the system

As Cross and Warraich write in STAT, we need to do more than just work within the current hospice system. “We need a new movement, one that embraces the best of what hospice pioneers envisioned but that also adapts to the reality of modern health care and society.”

Watch this

Remembering: Katherine Johnson