Opinion | Hospice Care Is Not Giving Up, It Is Leaning In

When the news recently broke that Jimmy Carter, who first announced he had metastatic melanoma in 2015, was entering hospice care, many media resources reported that the former president “decided to forgo further medical treatment” and enter hospice care.

The reports further drive the misconception that hospice care isn’t medical care.

As a geriatrician with a focus on palliative medicine, I believe it’s imperative to clarify that hospice care is not “forgoing” medical treatment or care — far from it. In fact, it is a model of medical care focusing on symptoms and whole person care at end of life.

In my clinical role as a specialist caring for older adults, I care for people through their health journey, which often includes promoting longevity, safety, and independence. I also help manage them and their families through medical illnesses, crises, and the end of life. I find that educating patients and families about the benefit of hospice early in an illness allows the patient to have control as to when they may want to discuss or consider the use of this benefit.

Hospice care is part of my medical care — it’s an added layer of support in caring for my patients. Hospice offers medical, nursing, chaplaincy, pharmaceutical, and social work services when a person needs this care most. It is multidisciplinary care with a goal of keeping a person out of the hospital by alleviating symptoms they may face in their final stages of life.

Barriers to Hospice Care

Hospice care is recognized as healthcare, and paid for by Medicare and most commercial insurances. Sadly, my state, New York, ranks 50 in the nation for hospice care enrollment through Medicare. It is a woefully underutilized service, yet many patients who decide to utilize the benefit tell me they wish they knew about hospice earlier.

There are many reasons for this. Often my medical colleagues feel they are messaging “giving up” to their patients and hesitate to have this discussion — a discussion that takes time and sensitivity, an often-insurmountable challenge in a busy medical office or in a hospital setting.

But studies show that discussing end of life care with patients can increase their quality of life as they near death, and honor the preferences of many to be cared for and die at home. Unfortunately, like other aspects of healthcare, there are disparities in hospice care.

Hospice care at home remains out of reach for those who don’t have a caregiver. Caregiving is an invaluable — and hard to find — resource for many.

Former First Lady Roslyn Carter, a caregiver from a young age to many in her family, founded the Roslyn Carter Institute for Caregivers. She understands all too well the importance of caregiving and how it can affect a family and a person’s ability to face illness with comfort and dignity. Hospice care can supply some personal care services through home health aide coverage, but this is often far less than what is needed. President Carter has a home, family, and caregiving support, which makes him a good candidate to receive hospice care. Unfortunately, his situation isn’t the norm.

That’s why I support expanding hospice benefits to include better access for those who can’t lean on caregivers for help.

This could include investing in and paying for services related to the tasks that caregivers perform, such as delivering meals, and providing showers and bathing services. It could also include covering the cost of implementing video cameras for safe monitoring, or devices such as Alexa or robot companions, which are not currently paid for through the Hospice Medicare benefit.

Expanding telehealth services would also help, as it would decrease transportation requirements, and, in theory, allow for more check-ins by the social workers or chaplains.

Other policy changes would make a difference in care too, including incentivizing the hospice benefit in skilled nursing and assisted living facilities. The hospice benefit is often limited in skilled nursing facilities by federal and state payment models. For example, assisted living facilities often require that family caregivers deliver controlled substance medications needed for symptom management. However, many people in assisted living facilities are there because they may not have family caregivers available. Therefore, the needed medical care may not be provided, patients may suffer, and may seek care at a hospital to relieve their symptoms. When this occurs, hospice services may be stopped.

The hospice benefit should be broadened so that payment model helps provide integrated services from home to hospital and skilled nursing facility — across the continuum of care.

Lastly, we must support caregivers by lessening barriers for hospice in skilled nursing and assisted living, and advocate for the development of more affordable hospice residences.

Despite its limitations, hospice care is a vital piece of healthcare in the U.S. It is a way to cloak a patient and their family with support at the most difficult time.

It is not “giving up,” it’s leaning in.

Maria Torroella Carney, MD, is chief of the division of geriatrics and palliative medicine and medical director for continuing care at Northwell Health in New York. She is also a Health and Aging Policy Fellow for 2022-2023.