The Hospice Bake Sale: Why Are Hospice and Palliative Care so Underfunded?

Google "hospice bake sale" and you'll get 32,600 hits. Forty thousand hospice care workers in the US are volunteers. (The latest figures on hospice patients dates from 2005 which means that not a lot of study is going on.) Then, 1.2 million Americans, or roughly one third of all deaths, were under hospice care.

We just don't get end of life care right in a majority of the US. It's a mystery to me why an essential phase in our lives, our death, is left to hospitalization when most wish to die at home or left to organizations funded by rummage and bake sales. Don't take this as a slight to the amazing, dedicated and professional hospice volunteers. But the fact that death is left to volunteers says something about how we value the dying process. Shouldn't hospice workers be paid for their necessary work? And why have hospitals been so slow to develop hospice care facilities or palliative care divisions? Could it be there there's no money in it? Studies show that the typical hospice patient saves Medicare $2 to 3 thousand dollars.

Today, BuffaloNews announces that with the help of grants (one private, one governmental), three organizations have joined to form the Palliative Care Institute in Buffalo: The University of Buffalo; Veterans Affairs Medical Center; and The Center for Hospice & Palliative Care. The article states:

“At a time when Americans are concerned about rising health care costs and are demanding health care reform, the Palliative Care Institute is a powerful ally to improve health care for one of our community’s most vulnerable populations — people diagnosed with long-term chronic diseases and debilitating illnesses,” said William E. Finn, president and chief executive officer of the Center for Hospice & Palliative Care.

Terminally ill patients, many suffering from long-term chronic illnesses, are frequently burdened by costly and unwanted therapies, unnecessary hospitalizations, poorly controlled symptoms, financial stress and poor communication with their caregivers, according to Finn and others.

“We hope to change behaviors and practices to encourage palliative care and expand the amount of research in the field,” he said.

UB is one of 17 medical schools that partner with a hospice to train specialists in palliative care. One goal of the institute — one of only a handful of such programs in the country— will be to coordinate similar training programs in UB’s schools of nursing and social work.

The article continues:

Research into the value and effectiveness of hospice remains in its infancy, and hospice is often mistakenly associated with euthanasia. By having a separate local organization focusing on the expansion of research to prove the benefits of hospice and the training of people in different disciplines, palliative care can gain greater acceptance among the public and policy-makers, officials said.

Until our society engages in a frank discussion of end of life care, our hospice and palliative organizations will be underfunded and under-resourced, elder abuse will continue, elder choice in care will remain limited, and end of life care costs will continue to cripple our medical systems.