Palliative care is specialized care for those with a serious illness that focuses on relieving both the patient’s symptoms and stress for the patient and family.
Sometimes seen as the step before hospice, palliative care is actually appropriate at any stage of a serious illness. Unlike hospice — which requires that treatment stop – palliative care can be offered while a cure is pursued.
The first palliative care program began in the mid-1980s. So why is it – 30 years later – that we’re still working on defining and standardizing palliative care?
Because palliative care is first and foremost a philosophy – one that’s counter to the business-as-usual mode that our healthcare system operates in.
Like much of today’s healthcare, this system is heavily task oriented. Medical specialties focus on curing the underlying condition, and depend on breakthroughs in science and technology with increasing technical expertise in “hard” science to advance their effectiveness.
In contrast, the value of palliative care comes primarily from the way a healthcare professional observes, communicates and relates to the patient. It’s holistic, team-based, patient-centered, family-oriented care.
Not the kind of thing that fits neatly into a “to do” list.
How do we institute a philosophy rather than a treatment or procedure? Particularly a philosophy that, at its heart, contradicts the systems and institutions in which it operates?
With palliative care it’s done slowly, step by step.
So far, significant progress has been made in places of power. Because doctors have more influence than other healthcare professionals, for palliative care to be taken seriously, it was critical that it be seen as a legitimate medical specialty on par with others like oncology and cardiology.
This is happening, and through the work of the National Consensus Project for Quality Palliative Care, the clinical standards for palliative care have become well defined.
Another challenge is establishing palliative care standards in both hospitals and community settings.
Hospitals have more power and influence than other healthcare settings for a variety of reasons – particularly because most healthcare professionals receive their medical training inside these acute settings. Making team-based palliative care a standard service helped legitimize palliative care within hospitals.
The Center to Advance Palliative Care is leading the national movement to establish hospital-based palliative care programs as a normal part of hospital care, including a tremendous number of resources that define and outline the core elements of hospital-based palliative care.
With these two foundational pieces in place – legitimizing palliative care as a medical specialty and as a hospital-based service – we’re now in an important second phase.
The key area now under development is to create a measurement system – or metrics – to measure the quality of this care.
While a number of potential measures exist, identifying those that realistically and reliably can be collected across our fragmented health system is proving daunting. Often the information needed for these metrics are scattered across multiple organizations. At other times, key information isn’t being collected, and changing that isn’t particularly feasible. The American Academy of Hospice and Palliative Medicine and the National Quality Forum are taking leadership roles to improve these metrics.
Infusing palliative care into hospital settings and measuring it have been important movements.
The new frontier for standardization is “community-based palliative care,” which embraces palliative care in all non-hospital settings – a doctor’s office, cancer clinic, nursing home, assisted living facility or a patient’s home. Clearly that’s a big challenge given the breadth and diversity of these settings.
Nationally, The Center to Advance Palliative Care is busy creating tools to help create these community-based standards.
Within California, a tremendous amount of activity is also occurring.
The California Health Care Foundation recently gave grants to six pairs of healthcare payers and providers to support them in developing operational and financial plans to deliver palliative care services in community settings.
SB 1004, passed by the California legislature in 2014, requires Medi-Cal managed care plans to provide access to palliative care services for Medi-Cal beneficiaries. The Department of Health Care Services recently issued guidance on patient eligibility and scope of services covered by SB 1004. The agency’s guidance is strongly informed by a pilot conducted by Partnership HealthPlan of California, which makes palliative care services available in home and community-based settings.
In addition, the Coalition for Compassionate Care of California and Blue Shield of California are co-leading a multi-payer, multi-provider collaboration to establish high-level standards for community-based palliative care. The next phase of this work will focus on piloting the standards across multiple organizations.
Even with all this activity in California and nationally, it’s likely to be several more years before community-based palliative care is solidly defined and standardized.
And while the task of defining palliative care from an operational standpoint will continue, its philosophical definition is already well established: maintain the highest quality of life consistent with a person’s wishes in the face of serious illness.
Judy Thomas is the CEO for the Coalition for Compassionate Care of California.