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Are We Failing Families at the End of Life?

A graphic op-ed on the weight of end-of-life care on loved ones

By Duke Today Staff

Dr. Nathan Gray is an assistant professor of medicine and palliative care at Duke University School of Medicine. As part of his work, he explores health care issues through graphic opinion pieces. Previously, he collaborated with another Duke doctor on how cancer care can bankrupt families.

This article previously appeared in the Los Angeles Times.

When I started making house calls for seriously ill patients after their hospital discharge, I had no idea how much time I would spend wiping tears on the porch.

Today, more Americans are dying at home than in the hospital. Most patients prefer it, but cost incentives as well as quality measures tracking in-hospital deaths have further driven health systems to embrace hospice care at home.

While this may seem better for everyone, seeing the brutal realities of caring for a sick loved one at home has sobered my enthusiasm for sending people home to die. Often it feels like we’re failing patients and families at the end.

Visiting patients at home introduces you to their world in a way you never get to see in the hospital. The things that give life color and meaning for them are on full display.

But when you stand with caregivers on the porch, you can also sense the overwhelming weight of exhaustion, doubt and inadequacy that families feel when trying to navigate the frightening landscape of advanced illness at home.

Modern medicine is helping people live longer, but it often involves intensive, around-the-clock care. At the same time, caring for someone with serious illness is a foreign practice in a society where a person’s last days are usually spent in a hospital.

Even the natural physical decline of ordinary dying is an unfamiliar process to many of us.

When isolation, lost sleep and financial strain are added to the grief of losing a loved one, the results are devastating.

The distress is so universal that I’ve actually started carving out time at the doorstep after each visit. I try to provide comfort and resources where I can. Unfortunately, I’m usually left wishing there was more help to offer.

Home hospice can provide expertise, equipment and help with symptoms such as pain or shortness of breath, but hospice only visits a handful of times each week. The remainder of 24/7 caregiving falls squarely on the shoulders of family members.

While a night in the hospital costs around $2,000, home hospice receives a fixed rate of less than $200 per day to cover all care and expenses. For some this may be sufficient, but for others, this one-size-fits-all approach is woefully inadequate.

Inpatient care at a hospice facility provides skilled, 24/7 support, but insurance restrictions limit this care to crisis situations. Less than 2% of hospice care is delivered in a hospice facility, and in many areas, inpatient units aren't available.

The U.S. spends more each year per capita on healthcare than any other country. As much as 25% of total Medicare costs occur in the last year of life, but our health system devotes little to caregiving needs at home.

Few health insurers cover daily home support. For families trying to hire help, the cost of a health aide adds up quickly, meaning it’s often an option only for the wealthy. For those who still have longer to live, the burdens of care can cripple a family

When we send people home to crisis, we’re not necessarily saving costs; often we’re simply shifting them from hospitals and insurers onto the backs of struggling families — families that will lose wages, savings and risk their own health to provide care.

In a system where new cancer drugs cost on average $100,000 a year per patient, we can’t expect end-of-life care at home to happen on a shoestring budget in order to offset escalating costs elsewhere.

Many of us will have our last days extended by hospitals, devices and drugs, but ALL of us will still die. If we’re going to make dying outside the hospital the norm again then we must invest more in helping people live well at home till the end.

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