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From Small Screen to Front Page: Getting On With Ethical Hospice

HBO’s ‘Getting On’

Getting On, an HBO workplace comedy set in a women’s geriatric clinic, features a director of medicine who collaborates with a hospice to provide bed space for the dying. The arrangement is lucrative, and it helps support the dubious research studies of the physician, Dr. Jenna James. She becomes greedy, though, and begins to enroll patients in hospice who are not nearing death. Dr James wants to generate even more profits. When the fraud is discovered, she finds her career in jeopardy.

One rarely expects TV comedy to end up being front-page news, but the story of Passages hospice shows that the lines between fiction and fact sometimes blur. Getting On followed this storyline for humor.

There is nothing funny about Passages’ lies to patients and families in order to bilk a stretched and underfunded health care system.

Luckily, such scams are rare. This is why they are so newsworthy when they occur. Most hospice caregivers are sympathetic and compassionate individuals who want to provide comfort and meaning to people at the end of life.

In 2005, I wrote a chapter for the Hospice Foundation of America’s program, Living With Grief: Ethical Dilemmas at the End of Life, about a hospice nurse who went out of her way to help a 12-year-old boy dying of cancer to fulfill his life wishes. He wanted to leave a note to his parents that they should not divorce when he dies. He also wanted to drive a car. The nurse I featured in that chapter also happens to be my aunt. She and my mother’s best friend were hospice nurses. I grew up around hospice care, and the stories they told were the reasons I was inspired to research end of life issues in my career.

Nearly half of all people on Medicare who die in a given year are hospice patients. These patients receive holistic care that addresses their needs physically, emotionally, socially and spiritually. The result is a more satisfying death for family and friends. Hospices are better at alleviating symptoms, helping patients to achieve their goals, and ensuring a better quality of life. Perhaps most importantly, hospice care leads to an easier mourning for the surviving family. That satisfaction also extends to hospice doctors and nurses; they are among the happiest providers in their respective professions.

If patients, families, doctors and nurses find meaning and satisfaction through hospice, then what accounts for the few bad actors?

The answer: not all hospices share a patient-oriented mission.

According to the Medicare Payment Advisory Commission (MedPAC), only 29 percent of hospice patients were enrolled in for-profit hospice programs in 2000. By 2015, 64 percent of hospice enrollees were in for-profit programs. The average length of stay in a nonprofit hospice is 65 days versus 105 days in for-profit programs. Many of the problems are found in this shift toward for-profit.

Nearly half of all people on Medicare who die in a given year are hospice patients

A 2014 study in JAMA Internal Medicine suggests that for-profit hospices offer fewer services and are more likely to discharge patients when they reach the cap on their Medicare benefits. For-profit hospices are also less likely to provide workforce development training, conduct research, perform charity care or offer family bereavement services. Profit motivated hospices have fewer professional staff (RN, MSW, MD) and have lower staff to patient ratios.

In terms of patient mix, nonprofit hospices have significantly higher populations of cancer patients than for-profits. While nonprofits offer services in patients’ homes and at in-patient facilities, for-profit hospices concentrate care in nursing homes and assisted living facilities. The latter are places where patients may be better funded and have better existing support.

As I have written elsewhere, problems arise when people in pain are viewed as sources of profit. When the possibility exists to manipulate a system in order to increase income and profit, it is easier to justify such actions because there are few guards against it. Nonprofits have boards and regular audits; these provide checks and balances that ensure money goes back into service.

Though Medicare is supposed to provide regular inspections of all programs, hospices can go years without visits from federal inspectors. The Centers for Medicare and Medicaid Services offers a consumer website to compare hospice programs based on the results of consumer surveys. The hope is that greater transparency from a patient/family survey will inspire hospices to better meet their needs.

Being a for-profit hospice does not mean it is less patient-focused. For example, during my years at the University of Nevada, Reno, I consulted with a for-profit hospice where we created a vibrant ethics committee to help the dedicated doctors, nurses and social workers thoughtfully deal with the challenges of providing care. The committee worked on both organizational and clinical ethics issues, providing ethics consultations and education.

Most families with whom I have worked say only positive things about hospice professionals they encounter. They are angels is a common refrain.

Hospice provides compassionate, patient-focused treatment to help patients and families through the end of life. A few bad actors should not sully the reputation of this noble endeavor. We can increase inspections and more closely regulate for-profit entities to ensure the ethical environments that put patients over profits to help make the most of life at the end of life.