A byproduct of the boomer generation: The single largest batch of people living at the same time in this country’s history will inevitably lead to the largest batch of people dying.
We’re still years from that demographic shift into old age and death, but baby boomers are increasingly confronted with mortality, dealing with aging and dying parents and in-laws.
That confrontation is driving a change in the way our culture deals with the end of life. It’s not a sea change, exactly, and not sudden, but it’s unmistakable.
“We’re an aging society and people now are definitely more receptive to ideas about the end of life,” said Margaret Clausen, executive director of the California Hospice and Palliative Care Association.
“There’s definitely a greater acceptance and awareness that hospice is available. We’re not as far along as some of us would like, but we’re farther along than we used to be,” Clausen said.
California, as it does on many cultural fronts, is helping set the course of change.
Nationally, California was at the forefront of a plan to offer hospice care to Medicaid beneficiaries, and it’s one of the first states pursuing a new effort to offer curative and hospice care simultaneously to terminally ill children and their families.
In Sacramento, four bills dealing with end-of-life issues are working their way through the California Legislature.
Medi-Cal, California’s Medicaid program, was one of the first in the country to adopt Medicaid’s optional hospice benefit and has stuck with it through thick and thin.
“California has retained it as an optional benefit even in the tightest of budget years,” Clausen said. “I can’t imagine Medi-Cal not retaining it this year, but this is turning out to be a unique year.”
California’s budget deficit, estimated at about $10 billion at the beginning of the year, may be twice that, according to Gov. Arnold Schwarzenegger’s estimate at the end of April.
“It was in the governor’s proposed budget on the first go-round. I’m holding my breath for the 14th,” Clausen said, referring to Schwarzenegger’s revised budget plan due May 14.
California — along with Colorado, Florida and a few other states — are pursuing waivers from Medicaid that would allow the use of funds to pay for services outside of a traditional hospice program for children and their families.
The goal is to provide what advocates call “concurrent care” — a blend of treatment aimed at curing disease along with end-of-life care through hospice.
Unlike traditional hospice programs often geared for people expected to die within six months, the Medicaid waivers would allow coverage for children earlier in the course of a terminal disease. The waiver program also wouldn’t force patients and families to choose between curative treatments and hospice care.
If approved, the California waiver program will be rolled out in a few counties the first year, then expanded in following years.
In Sacramento, California lawmakers are pushing for changes at the state level that could change the way Californians’ lives draw to a close.
AB 3000, by Assembly member Lois Wolk (D-Davis), would require health care providers to honor Physician Orders for Life Sustaining Treatment. Unlike advance health care directives and do-not-resuscitate orders, POLST directives carry the weight of a doctor’s order and must be honored across care settings.
Advance directives and do-not-resuscitate orders often cannot be located when needed, wordings are sometimes too vague to provide sufficient guidance for specific clinical situations or there is some question about one state’s laws versus another’s, according to the California Coalition for Compassionate Care, which is sponsoring AB 3000.
POLST forms, once signed by a doctor, would have to be honored in all care settings including ambulances and emergency rooms, and in all states recognizing the forms. POLST directives have been adopted in 15 states.
The Assembly Judiciary Committee approved the bill 10-0 last week. It now moves to the Assembly floor.
“By enabling patients to use a single form recognized across all treatment settings, AB 3000 provides patients with a user-friendly mechanism to ensure that their wishes are honored towards the end of life,” Wolk said in statement after the committee vote.
“This bill also improves existing law by recognizing patients’ right to choose life-sustaining treatment, not just their right to forego such treatment,” Wolk said.
Other initiatives include:
- AB 2747, by Assembly member Patty Berg (D-Eureka), which would require an attending physician, after making a diagnosis that a patient has a terminal illness, to provide the patient an opportunity to receive information and counseling regarding all legal end-of-life care options, including hospice.
- SB 462, by Sen. Tom Torlakson (D-Antioch), which would permit licensed hospices to provide inpatient care in a freestanding hospice facility or within an existing licensed facility. Under current California law, hospice has no option to establish a physical home base to offer care.
- SB 1196, by Sen. George Runner (R-Antelope Valley), which would amend existing law to require county coroners to inquire into the circumstances of deaths of people who were attended by a physician or hospice care giver in the 20 days before death. The intent is to create a uniform process to handle expected deaths across the state.
Advocates for patient rights and palliative care at the end of life say hospice is maturing as a discipline. It was about four decades ago when hospice began its journey from new idea to household term in this country.
“Hospice — and end-of-life care in general — is moving out of adolescence and into young adulthood,” said Jon Radulovic vice president for communications at the National Hospice and Palliative Care Organization.
“I think we’ll begin to see changes in how the culture and the medical world interact with hospice organizations. I think we’ll begin to see differences in reimbursement, for one thing.
“And,” Radulovic added, “I wouldn’t be surprised if a lot of those changes begin to take root first in California.”