Close to Home: Palliative care by the people, for the people

Most baby boomers – numbering in the millions – are going to die during the next 25 to 40 years. It’s not something we like to think about, but it’s true.

To the extent that we do think about it, we hope to have what many writers in recent years have referred to as “the good death” - a death of compassion, grace, peace and understanding. Unfortunately, neither our health care system nor our culture is prepared to make that happen. If things are going to change in time to benefit us and those who come after, we need to launch a political and social movement that supports people’s rights to appropriate health care.

American society has certainly recorded advances in its approach to death and dying over the past half century, particularly in the past 15 to 20 years.

It is no coincidence that the hospice movement happened simultaneously with the civil rights and women’s movements. As Dr. Eric Cassell reminds us in the film “Pioneers of Hospice,” “In the 1960s the private life became public. The personal became public and suffering became public.” The personal, as we understood from the women’s movement, also became political - and the subject of public policy.

Hospice legislation was put in place as part of Medicare in 1982. Pain and suffering and how we care for our elders and our sick finally became a public discussion, and the mandate to relieve that suffering became the work of our health care professionals.

However, most people still die in hospitals and nursing homes. To change health care at the end of life, we need to go beyond hospice to more fully develop and embrace the medical approach known as palliative care.

Palliative care is not the same as hospice care, although many people, including professionals, are confused about its meaning. Palliative care addresses symptoms of distress on every level - physical, emotional, spiritual, psychological - throughout the course of an illness, not just in the last six months of life, which is the realm of American hospice care.

Palliative care offers additional layers of support to people already dealing with serious medical issues but who need more than what our fragmented system can offer. Palliative care includes communicating about what it feels like to have a disease, understanding the impact of social and financial issues and appreciating the spiritual aspects of people’s lives - whether that is religion, a love of music or nature or something completely personal.

None of us will get out of here alive - not politicians, insurance company executives or anyone else. All of us will need and want holistic, compassionate care when facing serious illness, but this type of care will not be widely available unless we understand it and demand legislation and policies that reflect the needs of an aging population and honor that great mystery that we call life.

What can we do?

Talk with our families and friends about our wishes and our advance directives for health care. Support public policies that further the conversations about palliative care and hospice. ?Find out who the palliative care practitioners are in your community. Encourage people to access palliative care early on in any serious illness so that they can receive adequate support. Show up at the bedsides of loved ones who are dying and offer presence and support.

Finally, we must redesign a health care system so that anyone with a serious or terminal illness benefits from a holistic, palliative approach to care.

Seniors At Home is the senior services division of Jewish Family and Children’s Services, a 163-year-old nonprofit serving people of all backgrounds in five Bay Area counties, with home care, care management, counseling and many other programs.

It is the only social service organization in California that has its own palliative care program, which includes a nursing director, a volunteer physician, a social worker and an interfaith chaplain. They provide intensive palliative care volunteer training annually in their San Francisco office.

This is one of the few palliative care consultation programs outside of a hospital setting.

Judith Redwing Keyssar is a nurse and director of the Palliative Care Program at Seniors at Home, a division of Jewish Family and Children’s Services of the San Francisco Bay Area.