Close to Home: It’s about living, even at life’s end

For the past quarter century and more, I’ve worked personally and professionally as an elder advocate dedicated to advance care planning, community-based long-term care and palliative care. As director of the Community Network Journey Project, and the Senior Residential Care Council before that, I’ve had the ongoing privilege of working with and for people living through life’s end. And I’ve worked closely with caregivers, physicians, area hospices and other service providers all along the way.

Never have I been asked by anyone nearing the end of life to help hasten their death. The focus is always on quality of life, even in the face of serious illness and/or life winding down.

Individually and as families, we have very personal ways of dealing with serious illness and dying. Some choose to have all modern medicine has to offer and may risk “death by intensive care” as a result.

Most prefer being home as life draws to an end. Hospice and palliative care make that doable with their wonderful skill, care and support tending to the physical, psychological, emotional and spiritual needs of the person and their family members.

Unfortunately, the hospice benefit that’s available has access barriers that cause many people dying to forgo hospice or never even learn about it.

On average, people receive hospice care only a few weeks before dying. Routinely, patients are admitted within days of death. Palliative care (sometimes referred to as supportive care) can help bridge this huge gap.

Unlike hospice, palliative care can be provided together with curative treatment at any stage in a serious illness. With amazing skills in communication and symptom management, palliative care professionals work as a team to improve quality of life for the patient and his or her family.

California has a new law (SB 1004) requiring managed Medi-Cal health plans to ensure delivery of palliative care services to those they serve. Guidelines for implementation of this new Medi-Cal benefit are under development in Sacramento.

SB 1004 is a step in the right direction. However, it only will make palliative care available to the Medi-Cal population.

For people in other health plans, palliative care may be available but not routinely offered or provided from onset of serious illness as it should be. Payment rewards volume of care provided rather than quality of care and outcomes.

There is a major shortage of health care providers trained and skilled to offer and provide palliative care.

Our community is blessed to have some exceptional palliative care practitioners, several hospices and “My Care My Plan - Speak Up Sonoma County,” a county level program dedicated to improving end-of-life care.

To achieve the best possible care, people must be fully aware of their options and advocate for themselves and their loved ones based on personal goals of care and a clear understanding of health status. Advance care planning is essential to the process.

In Sonoma County and across California, major work is in progress to bridge the gaps and improve end-of-life planning and care for all. Numerous prominent studies confirm that people living with serious illness derive great benefit from advance care planning, palliative care and community-based long-term care.

We need more media attention focused on these wonderful models of care and the health reforms needed to make these models the standard of care for all of us.

Susan Keller is director of the Community Network for Appropriate Technologies, a nonprofit educational and charitable organization serving Sonoma County since the 1970s. She also serves on the steering committee for “My Care My Plan - Speak Up Sonoma County,” a county Health Action initiative.