Palliative care providers face an uphill battle when it comes to communicating and defining the scope of their interdisciplinary services not only to seriously ill patients, but also referring clinicians across the continuum.
Misconceptions abound in and around the spheres of serious and terminal illness care. The public and health care providers alike often conflate palliative care with hospice, according to Robin Stawasz, program development executive, Acclivity Health.
“Many still associate palliative care very closely with hospice. This is true for consumers as well as providers, including providers both within and outside of the hospice field,” Stawasz told Hospice News in an email. “This defines the entire specialty by a single sub-specialty. It would be like defining all orthopedics by the standards of sports medicine.”
Top palliative care misconceptions
Palliative care is often perceived as an ancillary service, a “soft science” or a supplement to end-of-care rather than its own realm, Stawasz added.
A key to combating these notions is to communicate the full scope of interdisciplinary care involved, and the circumstances in which a patient may benefit from it, she said. Palliative’s inclusive focus encompasses behavioral, emotional, spiritual and social services alongside pain and symptom management in serious illness care is crucial to communicate, Stawasz indicated.
A main issue with understanding palliative services is the lack of a standardized definition for this type of care, according to Dr. Balu Natarajan, chief medical officer of AccentCare’s hospice division. This has led to widespread variances around the delivery and perceptions of palliative care, he said.
“There are a lot of misperceptions about palliative care because there is no such thing as a defined ‘Palliative Care Benefit,’” Natarajan emailed Hospice News. “Some companies may offer a nurse, others a nurse practitioner, and some may have an entire interdisciplinary team.”
To date, the U.S. Centers for Medicare & Medicaid Services (CMS) has not established a dedicated palliative care benefit to lay out quality standards and guidelines. CMS has defined this care as services that “ease symptoms of serious illnesses,” provide relief from suffering and “address patients’ physical, mental, social and spiritual well-being.”
A leading misunderstanding is that patients must forgo curative treatments in order to receive palliative care, Natarajan said.
“Another misperception is that once patients opt for the palliative care service, they will no longer receive curative treatment for their disease,” he stated. “It’s often misconstrued as care for those who are about to die, when in reality it could be part of a treatment plan for someone who has a year or years left to live. This misconception often delays patients from getting access to palliative care, which could help ease symptoms and suffering while they are being treated for things like cancer, or kidney disease. A patient who is on palliative care can still receive treatments intended to cure, control, or modify their serious illness.”
Though misconceptions can hinder palliative access, widespread unfamiliarity, insufficient reimbursement and lagging volumes of trained providers represent the largest hurdles to improve reach, according to Alivia Care President and CEO Susan Ponder-Stansel.
“A big barrier to palliative care access isn’t misperceptions but lack of familiarity with it and how it helps,” Ponder-Stansel told Hospice News. “[It’s also a] lack of availability or access to the service and payment, which often involves Part B Medicare and involves a co-pay.“
Various value-based payment models and state-level programs include reimbursement channels for palliative. However, these payment avenues are often in the form of supplemental benefits, such as in the hospice arena, and don’t cover the full spectrum of interdisciplinary services involved in palliative care.
Strategies to promote understanding
Moving the needle towards improved understanding around palliative care takes an increased effort to communicate the value and purpose of these services out in a providers’ community, according to Natarajan. Having a palliative care team with strong communication skills to connect with patients and families in the community is a significant factor, he added.
“Education is key to breaking down the myths and misconceptions about palliative care,” Natarajan said. “Providers must reiterate to families and patients what the differences are between palliative care and hospice. The biggest success is when palliative care team members connect with patients and families and are able to sit down with them and first understand their perception of disease and prognosis. The team can then help fill in any knowledge gaps. When successful at scale, patients and families are more comfortable while pursuing curative care, minimizing side effects.”
Payment is at the crux of the misunderstandings, according to Stawasz. Without a clearly defined palliative care reimbursement model, misconceptions and access issues will ongoingly plague the field, she stated. Without an established benefit in place, community-based primary care models provide the most promising reimbursement avenue for palliative providers to reach and support patients, Stawasz indicated.
“Until the field defines the standards of non-hospice palliative care and builds a CMS palliative care benefit, this variation will continue,” Stawasz said. “Programs build direct care into the palliative care model, working to provide primary care services to their patients in the home setting. Doing so expands billing opportunities and can build patient alignment, which is the driving force in taking on shared risk and value-based contracting. That is where success and sustainability can be found.”
Though hospices represent nearly half (41%) of community-based palliative care providers nationwide, the space is seeing an increasingly diverse mix of other health providers, including those in primary care.
“We are in an evolutionary time in palliative care where we’re seeing groups of different providers trained in various specialties,” Ponder-Stansel said. “And that’s where some of the problem starts – is how we train providers on the procedures and interventions needed in this care.”