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Victor was a man in his late 50s, hospitalized with significant bowel obstructions from metastatic cancer. Despite maximal medical care, he was dying. His ultimate wish was to spend his remaining time at home, where, from his favorite chair in the living room, he could listen to the Atlantic Ocean’s melodic waves. But he had no family to help with his physical needs and hospice only provided one-on-one care for a handful of hours per week. Ultimately, Victor had no choice but to remain in a medical facility. He never heard the ocean again.
The chasm between what patients want at the end of life and what most families can provide is regrettably common. A 2017 Henry J. Kaiser Family Foundation study found that 70 percent of Americans hope to die at home. Nevertheless, a 2019 New England Journal of Medicine study reported that 60 percent of patients still die in hospitals and nursing homes. This number is even higher now among those who died from COVID-19.
Death is one of life’s most universal experiences. Each of us will confront the death of someone we love and may even be tasked to care for them. This is especially true given the increased risk of chronic and serious illnesses in an aging population of Americans. As physicians with expertise in palliative care, geriatrics, and hospital medicine, we often witness our patients, like Victor, and their family’s devastation upon realizing they cannot fulfill a final wish to die at home.
The reason for this disconnect between what patients and families want at the end of life and what is possible cannot be attributed to one sole cause. Nonetheless, Medicare’s insufficient funding for in-home caregiving support for those receiving hospice makes dying at home unaffordable and impossible for far too many.
The importance of Medicare’s funding of end-of-life care cannot be understated. Medicare is a central pillar of America’s “death system,” a term coined by Professor Robert Kastenbaum, an expert in the field of death and dying, which means that Medicare is part of the societal system that defines how death is regulated and managed. Given Medicare’s pivotal role, why then are so many Americans’ final days spent in hospitals or nursing homes, where care is costly and devoid of the creature comforts of home?
Medicare’s hospice benefit places a relatively low daily reimbursement rate per person ($203 in FY 2022 for routine home care) for all services and places a maximum on total spending per person($31,297 in FY 2022). This constrained funding requires hospice organizations to provide care as cheaply as possible to cover all services. Furthermore, for-profit hospice agencies now make up roughly two-thirds of all hospice agencies, many of which are owned by private-equity firms and publicly traded corporations. They may therefore have different philosophies, as compared with nonprofit agencies, regarding how they spend this per person funding beyond the minimum Medicare requirements. Ultimately, this shifts the burden of personal care on to patient’s families and loved ones, which is often challenging if not impossible in the face of multiple competing demands.
What many don’t realize until personally faced with end-of-life issues is that Medicare’s hospice benefit only pays for a limited amount of hours of nurse check-ins as well as limited caregiving hours from a home-health aide. Both services depend on the patient’s individual needs such as symptom management, wound care, or bathing. While data regarding the number of patients on hospice, location of care, and total days spent on hospice are easy to locate, specifics such as how many hours of care from a nurse or home-health aid each patient receives per week are difficult to find.
Some patients report an average of 30 minutes of daily care, for a total of 3.5 hours per week. In speaking with one hospice agency in New England, this usually averages out to only three to five hours of in-home care per week. Patients with very complex needs may be seen more, and those without complex needs may be seen less because hospice agencies must also balance high-needs patient with those with lower needs.
To fill the care gap, hospice relies on families to provide the lion’s share of personal care, which can extend over days, weeks, or even months. Funding for Medicare’s hospice benefit must be more flexible and responsive to the needs of caregivers so more Americans can die at home with the dignity they deserve in their final hours.
Access to one-on-one care is imperative because at the end of life, the person who is dying is often too weak or symptomatic to do basic tasks, such as toileting, bathing, and getting in and out of bed, not to mention cooking or cleaning. In addition, most require help administering medications for comfort. Generally, this means that someone needs to be present or available to help for much of the time.
In our experience, Medicare’s restrictive coverage fails to support the majority of individuals who want to die at home but don’t have the intensive family support or financial means to pay out of pocket for extra care. Even if family members are available for short periods of time, the dying process can be lengthy.
For adults who work one or more jobs, are raising children, or have other responsibilities, providing this level of caregiving is impossible even if the desire is there. In a study published recently in the Journal of Pain and Symptom Management (JPSM), “Approximately 61 percent of family caregivers in the United States are also working outside of the home.” Furthermore, for the one in six adults over the age of 55 without children, access to family caregivers may be more difficult than for those with children.
It’s also important to recognize that women and individuals from marginalized communities often shoulder most of this personal care burden. This disproportionately threatens the economic and mental well-being of communities who already face inequities.
In a study published in February 2022 in the JPSM, which focused on hospice caregiving for cancer patients, 69 percent of hospice family caregivers were found to be women. From an economic standpoint, a 2014 review published in the Journal of the American Medical Association reported that, “The economic value of this informal caregiving dramatically surpasses spending for formal home health care and nursing home care.” From a mental health perspective, a 2017 study in the Journal of Multidisciplinary Healthcare reported, “more depressive symptoms, insomnia, and health care utilization,” for working family caregivers.
Economic disparities have already widened for women and people of color in the US during the pandemic. This will only continue to worsen if unpaid informal caregiving is the norm for the majority of individuals at the end of life. The 2022 JPSM study also found that caregivers who did not have adequate family support or experienced financial challenges reported greater anxiety and depression. Behavioral health needs have also been on the rise throughout the pandemic. This will only continue to worsen for Americans who must take on caregiving roles as the pandemic continues.
In February 2022, the Lancet published the “Report of the Lancet Commission on the Value of Death: Bringing Death Back into Life,” which was authored by more than 20 international experts on end-of-life care. In this report, the authors state, “The story of dying in the 21st century is a story of paradox. While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated … without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for this Commission.” While the US is touted as having some of the most advanced medical care in the world, this report demonstrates that we have a long way to go in striking a better balance between optimizing quality of life versus supporting end-of-life care. Furthermore, although it’s often a universal desire to die with dignity and comfort, our policies do not sufficiently support this societal value.
The US paradox is that Medicare spending, which as of 2019 was $799 billion and costs an average of $80,000 per patient in the last year of life, has far fewer financial limitations when it comes to costly life-saving treatments such as dialysis, coronary stents, and chemotherapy. The program’s generous coverage of aggressive interventions—no matter how expensive and even when death is imminent—abruptly ends when individuals transition their care to focus on comfort with hospice at home.
Ultimately, this reimbursement paradox shines a light on Medicare’s priorities: We’ll pay to try to extend your life, but when you want to die at home, most of the costs of your care needs will fall on you or your family to figure out. This is a significant reason why so many individuals like Victor spend the end of their lives in medicalized settings such as hospitals or nursing homes.
To be sure, we recognize that bolstering funding for one-on-one caregiving is costly to an already taxed Medicare budget. However, it’s much more costly when patients defer hospice care due to the limited support available and continue repeated cycles of hospitalizations and nursing home admissions.
To truly accompany Americans throughout their life course, Medicare’s financial restrictions for in-home caregiving support for individuals on hospice at home must be liberalized. We must increase Medicare’s daily reimbursement rate and total payment maximum to provide additional funding for in-home care. Furthermore, this must occur simultaneously with increased transparency regarding how hospice agencies spend this money, especially given that agencies have different motivations.
Patients and families should be able to easily see and understand the hours of services—including nursing care and home health aides—that they are allotted as well as the average number of hours various agencies provide. While Medicare currently has a tool to compare agencies, this level of detail is not available.
We should also support programs that make earlier transitions to hospice care possible. For example, some hospice agencies are piloting programs and advocating for patients to access hospice care earlier while continuing certain treatments that focus on quality of life, such as transfusions, radiation, or dialysis, which typically have to be stopped to receive hospice care. Increasing access with new funding models such as this could help patients spend more quality time at home and decrease high-cost hospitalizations toward the end of life. We need to do better for our society’s sickest and most vulnerable.
Dying at home should not just be a luxury for those who have enough family close by, or for those affluent enough to pay. As the Lancet Report suggests, it’s time to reconsider our values, especially in the face of an ongoing pandemic. Rather than prioritizing expensive overmedicalized care, let’s institute Medicare hospice policies that augment reimbursement for in-home caregiver support. Such support will give those like Victor the chance to spend their last days where they want—at home.