The Culture of Hospice

MCL Backstory

By Krista Harrison

MCL member Krista Harrison first attended to hospice as a care model when her grandmother reached the end of her life. Her grandmother had what Harrison now recognizes as quintessentially good and bad experiences with hospice – the first too early and marked by overpromised care and too much morphine, the second in the last three days of life but marked by care titrated to goals and delivered with compassion. A better experience, she has since learned, doesn’t rely on promises and morphine. It is based on anticipatory guidance and expert interdisciplinary care of the dying and their caregivers.

Experiencing hospice with her grandmother solidified Harrison’s commitment to understanding and improving this vital healthcare institution. Harrison’s personal and scholarly perspectives on hospice are bolstered by insights from her time as director of research in a community-based hospice and palliative care organization. In that role, she worked with front-line interdisciplinary team members to conduct studies. This provided her with the unique insights that arise from long-term participant observation. During her fellowship in aging research, Harrison visited clinics and interviewed hospice organization leaders and clinicians, which produced yet further insights. Her experiences and research position Harrison to see and appreciate the clash of culture between the mission and reality of hospice.

In the United States, hospice had philosophical origins. In the 70s, volunteers and not-for-profit organizations started to care for people dying with cancer after patients opted out of hospital-based curative care. In the decades since, hospice has become part of the mainstream. It is regulated like other healthcare, and in recent years has attracted an exponentially increasing share of profit-oriented corporations, including private equity.

“There is a culture clash when organizations are profiting off hospice care since the hospice philosophy is really about reducing suffering,” says Harrison. “There’s an ethical dilemma in that the mission of hospice is to honor the wishes and mitigate distress of the dying person and family over the last months of life, but the reality is that the regulations and business model incentivizes shorten lengths of stay and minimize expensive treatments regardless of appropriateness and palliative benefit.”  Harrison has studied hospice in many settings and knows that its philosophical foundations are not extinct. Her goal: identify policies and practices that encourage a hospice culture of care in today’s healthcare system.

Hospice is part of a broader umbrella of palliative care services whose mission is to improve quality and life and reduce suffering. Hospice and palliative care can differ in: the stage of disease at which they are introduced, the settings where they are commonly available, and the medications and other care that are permitted or prohibited once enrolled. These examples – only a portion of all the differences that exist – reflect the history in which the care models developed.

Hospice care began as home and community-based programs serving people in the last 6 months of life. Some hospices then sought to provide community-based palliative care earlier in the disease course, for example, partnering with community oncology practices. Hospitals began to develop their own inpatient, and later outpatient, palliative care services. New developments did not replace past practices; the landscape simply became more complex as more choices developed. These organizational changes occurred as the business of hospice (and medicine generally) focused ever more strongly on financial return. 

The ethos, philosophy, and business of hospice reflects this complex history. Harrison notes that to understand hospice today – and improve hospice tomorrow – entails engaging the tools and skills of history, philosophy, politics, policy, economics, ethics, management, ethnography and sociology. Harrison uses these tools personally and through collaboration to make sense of hospices’ diverse cultures and practices. She sees how foundational values of supporting the dignity of dying people and their families are refracted by setting and profession. Hospices generally seek to meet patients where they are, grapple with their diagnosis or disease stage, and support anticipatory and bereaved grief. Hospice is unusual in its focus on translating complex emotional, philosophical, and social orientations into concrete plans of care executed by interdisciplinary care teams supported by a single financial model. But given the stakes, it is no surprise that the hospice process is not always smooth and conflict-free.

Community and academic clinicians approach hospice from distinct professional cultures of care and may have difficulty understanding each other. Academic palliative care providers are paid decently, and their research can attract attention from policymakers and the media. Meanwhile, home-based providers invest their time and energy travelling to connect with patients at home. This work can feel anonymous and thankless in a healthcare system that does not adequately recognize, support, or compensate. Moreover, physicians may approach hospice with a medical gaze. Whole-person support may fall to others, e.g. day to day care (nurses), functional support (aides), spiritual needs (chaplains), care coordination (social work). “Someone at a conference once said they missed the old days when hospice clinicians were cowboys trying to do what’s best for patients rather than trying to generate self-serving research and evidence,” said Harrison. Hospice is certainly not the only domain where academe and community or physicians and other professionals clash. But the field’s origins in practical, holistic, community-based care as an alternative to the medical model can make these clashes particularly acute. 

Additionally, unintended consequences of hospice policy can complicate some people’s access to hospice. Medicare began offering hospice as a benefit in the early 1980s. “The culture for hospice was built around the model of cancer, focused on pain relief and enabling the care dictated by a patient making their own decisions,” explains Harrison. To be eligible for Medicare hospice coverage, physicians had to attest that a patient had a 6-month life expectancy. These early policy choices – meant as cost containment measures - mean that hospice culture and financial reimbursements are currently oriented to the imminently dying. People with dementia syndromes, who typically have long disease courses, have challenges in accessing hospice care at the right time. Early in the disease course, when people with dementia can guide their own care, they are not eligible for hospice; physician estimates of when a person with dementia is within 6 months of death is no better than a coin flip. Meanwhile, hospice financial mechanisms incentivize enrolling dementia patients earlier in their course of illness when their needs may be lower; this allows providers to make a significant profit. A 2020 paper by Harrison and colleagues found that hospice clinicians and leaders perceive changes in regulatory oversight, starting in 2013, to reduce their ability to serve people with dementia. Research using nationally-representative data shows this to be true: changes to hospice policies and regulatory practices since 2014 have decreased the enrollment of people with dementia and increased rates of live discharge or disenrollment from hospice among people with dementia – abandoning them. 

In spite of the challenges she and her colleagues have identified, Harrison sees many ways that hospice can benefit people living with dementia. Her interviews with providers and leaders reveal they perceive the demand for hospice among persons with dementia to be increasing. Though the service is not tailored for them, Harrison’s quantitative research has shownreceipt of hospice care is associated with higher proxy ratings of last-month of life care for people with dementia.  A substantial proportion receive hospice care and die at home or in community-based settings. Home-based care is preferred or desired by persons with dementia and their care partners. Though much research on end-of-life care for dementia has focused on nursing home settings, Harrison’s research has shown a substantial number of persons with dementia live in the community with severe disability and within the last few years of life.  Yet at home there are fewer ways to easily obtain help and support for disabilities in daily activities. Medicare does not pay for social support, and Medicaid help with home and community-based services vary by state and may not be adequate compared to needs. Moreover, it’s challenging to find paid caregivers: home health aides are underpaid and home health agencies may be understaffed. Families may feel guilty not being able to provide all the care themselves or may not be able to afford paying for help, and may forgo financial, physical, and mental wellbeing. These challenges reveal opportunities where hospice – as a model of interdisciplinary care at home - could meet the needs of people living with dementia and their loved ones.

Hospice care has the potential to provide holistic, whole-person end of life care for people living with dementia and their families. The question now is whether regulation, business, and clinic culture will align themselves to realize this potential. Through research, experience, and activism, Harrison has gained a seat at the table to help make this happen.