You’re sick, constantly in and out of the hospital, faced with an unending series of tests, tubes and monitors. You may soon qualify for hospice, but not yet. Instead, you remain stuck in that frustrating netherworld between acute medical interventions and end-of-life care.
Treatment… or surrender? It’s a conundrum for both patients and families.
Palliative care – which focuses on relieving the pain and stress of serious illness – is quickly filling this void. And while this new, evolving world of care has few norms or hard definitions, a Bay Area program is helping to establish a gold standard that includes intimate spiritual and emotional support from a team of primarily non-medical community providers.
“Community-based palliative care is really the wave of the future,” says J. Redwing Keyssar, director of palliative care for Jewish Family and Children’s Services of San Francisco Bay Area.
A national expert in palliative care, Keyssar says its role is widely misunderstood by clinicians who see it merely as pain management before the inevitable slide towards hospice.
Instead, her program weaves together a network of social service professionals to provide a web of support for patients and overwhelmed families. This includes emotional counseling, financial guidance, translation services, and case management with team members “who can take on the role of an adult child,” says Keyssar.
While palliative care was first spawned in hospital settings, community providers like Keyssar often do what overtasked medical workers can’t.
“We can spend the time to do the intensive hand-holding that many people need,” she says. “Palliative care is really the practice of holistic medicine.”
Barb Silver, who directs the Women’s Health Resource Center at California Pacific Medical Center, offers kudos to the Jewish Family and Children’s Services program, saying sick patients need help far beyond their own bed: with food, housing, navigating the health system, or acting as a patient advocate.
“A disease affects every part of their lives – financially, spiritually, psychologically, emotionally,” says Silver. “Their program is really comprehensive.”
Its interdisciplinary team includes Keyssar plus a social worker trained in gerontology, a chaplain-rabbi, and a volunteer physician who help alleviate suffering of all kinds.
Together, they address another critical yet often taboo topic: learning how to die.
“Families do not get the kind of closure most people want when they’re standing around the bedside with rails and tubes and they’re even afraid to touch their loved ones,” says Keyssar.
A registered nurse, Keyssar has also been a death midwife for a quarter of a century, her experiences chronicled in the 2010 book Last Acts of Kindness.
What has she learned from her experiences?
“I learned how not to die, and how many people don’t want to die,” says Keyssar. “The default in our medical system is to resuscitate people… when bodies should be letting go on their own.”
She says says 80% of those actively dying want to do so at home when, in reality, fewer than half actually do.
Keyssar fondly references legendary end-of-life expert Elisabeth Kubler-Ross: when the science of medicine no longer serves the patient, it’s the art of medicine that takes over.
More than 100 volunteers have received intensive training in palliative care from Jewish Family and Children’s Services, including guidance in spiritual comfort and bereavement counseling.
Essential to the program’s success are its local partners.
“Your collaboration with other community partners is critical,” says Keyssar, citing a plethora of Bay Area organizations including local medical clinics and assisted living facilities, the Family Caregiver Alliance, chapters of the Alzheimer’s Association, faith-based groups, and LGBTQ advocates. Recently, Keyssar’s program cared for 19 patients in collaboration with the outpatient palliative care team at the UC San Francisco Symptom Management Service.
Spawned in the United Kingdom in the 1960’s, palliative care was imported into the United States 20 years later. After a few hospitals like the Cleveland Clinic pioneered the field, palliative care became common nationwide – although not always evenly accessible throughout California.
And palliative care finds itself facing another strong headwind: worker shortages.
A 2010 California study estimated that there was only a single palliative care physician for every 1,300 patients with serious illness – and one for every 20,000 older adults with chronic disease.
“How are we going to provide this care to the millions of people who need it without the thousands of clinicians to provide it?” wonders Keyssar.
Since its launch in 2007, her program has served over 800 patients throughout the greater Bay Area, including 200 last year.
Jewish Family and Children’s Services typically targets families caught in a fiscal middle ground; not wealthy enough to hire caregivers, nor poor enough to qualify for Medi-Cal and a program which funds home caregiving. It supports those who would likely become impoverished without its help.
“Part of what we’ve done over these years is offer a lot more support to people who are trying to stay at home,” says Keyssar. “And we see what a difference that makes.”
She compares the growth in palliative care to the birthing process, which was once reserved only for doctors. Strict delivery room rules were eventually eased and husbands were allowed inside the sacred space. Today, birthing centers, water births and midwives are commonplace.
“The dying process and the birth process are similar in many ways.”