It’s been called “The terrible choice” for the seriously ill. Choose hospice and imminent death… or treatment in hopes of a cure.
But not both.
That’s the choice many patients must make when faced with advanced serious illness. Those who choose to pursue a cure often go without palliative care, which provides the kind of pain relief, emotional comfort and social support that all seriously ill people need – not just those who are near death.
For patients facing advanced illness and end-of-life choices, the legacy of modern medicine isn’t limited to miracle cures, but often extends to prolonged pain and intense suffering.
Yet much of this despair is preventable.
Patients with private insurance are seeing a rise in palliative care to address the excruciating limbo period of advanced serious illness that occurs before qualifying for hospice (which is typically defined as the last six months of life). New palliative care programs are blossoming to offer the best of both worlds: care and comfort for the living as well as for the dying.
And California is helping lead the way.
With Governor Brown’s signature on a bill requiring health plans to provide palliative care to their low-income Medi-Cal managed care patients, experts hail the move as a bellwether for all states to spur innovation and define comprehensive standards for palliative care.
The goals: reduce unnecessary suffering, improve care, and reduce costs.
The move towards expanding palliative care for those not ready – or ineligible – for hospice, can be traced back to the Aetna insurance company, which a decade ago pioneered its Compassionate Care Program that proved a safe haven for families struggling with “the terrible choice.” It offered patients and their families additional support – case managers to discuss treatment options along with resources for emotional support, pain management and respite care.
Stressed families were relieved to access both home-based palliative care together with hospice — which Aetna expanded from six to 12 months – thus easing the burden for families once forced to choose one or the other.
And Aetna discovered something shocking. When patients weren’t forced to choose, they accepted palliative care earlier. Symptoms were managed better, and quality of life improved. Patients were also more likely to choose hospice sooner.
With greater acceptance of both options — palliative care and hospice – Aetna also saw a decrease in hospital stays. The insurer scored a 22% cost savings.
Expanding palliative care is fast proving to be that rare healthcare scenario where everybody wins: patients, families, clinicians, hospitals and health insurers.
After Aetna pioneered Compassionate Care, other California insurers followed – Anthem Blue Cross, Kaiser Permanente, Blue Shield of California, Health Net, and United HealthCare – yet they took very different approaches.
Some offered advanced pain management programs. Others featured round-the-clock home nursing visits. Most expanded case management to help patients and families navigate the complex healthcare system.
With the momentum gaining after passage of California’s palliative care bill, experts hope the state is heading towards standards of care that highlight programs of excellence.
“California is one of the states we’re most excited about,” says Emily Warner, health policy director for the national Center to Advance Palliative Care, which has launched a training program to help providers create or improve their own palliative care networks.
Notable state programs include Sutter Health, Sharp HealthCare, and the University of California, San Francisco.
What needs to happen for palliative care to blanket the state?
Today, it’s focused on hospital settings. The key to improving palliative care will be extending into non-hospital “community settings” — clinics and doctors’ offices along with long-term care facilities like assisted living and skilled nursing. One model California program was launched in 2005 at the Motion Picture & Television Fund’s continuing care facility, which houses Hollywood veterans.
Yet there remain a number of other barriers.
Medical students prefer higher-paying specialties rather than the modest incomes provided by either geriatrics or palliative care. And becoming board-certified requires additional training for physicians who already have many of the needed skills to provide palliative care. (Palliative care experts want all clinicians who handle advanced illness to have basic training in these skills.)
Finally, hovering like a dark cloud over all of palliative care is reimbursement.
How can providers be adequately reimbursed for palliative care when it involves a vast interdisciplinary network of doctors, nurses, chaplains, social workers, and services like a 24-hour hotline?
Medicare, for example, pays only a single daily sum to hospitals for either palliative or hospice care, a rate that is often inadequate for robust palliative care aimed at both comforting patients and treating disease.
To address the vexing payment problem, in December the California HealthCare Foundation issued 10 planning grants to community providers and payers in hopes of spawning new payment solutions.
The need for palliative care is great, and will only continue to grow.
There were 14 million Californians suffering from at least one chronic illness in 2013, including seven million with multiple chronic illnesses.
California is now on the precipice of national leadership in palliative care, which can seem like The Wild West: vastly different programs, even different definitions of palliative care.
Yet what is most heartening is that the state’s stakeholders, led by the Coalition for Compassionate Care of California, are working together to solve these problems. They meet again in early July.
A tipping point will arrive when palliative care is standardized across the nation’s healthcare delivery spectrum.
With continued dialogue and cooperation, California may be critical in that effort.