Lack of Palliative Care Definition Impacts Patients, Hospice Business

Community-based palliative care is expanding exponentially nationwide with hospice providers at the forefront, but efforts to build care and payment models are hitting a wall due to the lack of a standardized definition for those services.

Patients and families who are facing serious illness need palliative care, and providers need sustainable payment and clinical models. The lack of a definition can have serious business implications for hospices, who are increasingly diversifying their services to include palliative care but struggle to make their programs profitable or even sustainable.

“We need to define what palliative care is in the marketplace and whether it’s a community-based palliative care benefit, and it can’t be that you ask 10 different people what palliative care is and you get 13 different answers,” said Nick Westfall, CEO of VITAS Healthcare, the hospice subsidiary of Chemed Corp. (NYSE: CHE), at the Home Health Care News Summit conference in September. “It can’t be the scenario anymore, because you can’t produce a sustainable care delivery model. The government can’t think about how to map a sustainable, federal reimbursement model that makes that work, because it is really a cost avoidance piece. That’s why different entities have wanted to get into the space; they recognize the value of that.”

Interest in palliative care is growing among health care providers (including hospices), payers and policymakers due to the substantial potential savings in health care costs and the need to care for an aging population, a high proportion of which suffers from serious or chronic illness.

Palliative care consultation can reduce direct hospital costs by $3,000 per patient admitted, and up to $4,800 per admission for patients suffering from four or more diagnoses, according to a 2018 study. It can also reduce the frequency of 911 calls, emergency department visits, and unnecessary hospitalizations.

Home-based palliative care could reduce societal health care costs by $103 billion within the next 20 years, the nonprofit economic research group Florida TaxWatch said in a report.

A number of organizations have developed definitions of palliative care. Some consider palliative care to be transitional care that takes place when curative treatment is no longer effective, but the patient has not reached the point where they are are hospice eligible. Others recognize that patients can benefit from this care at any point in the course of their illness without interrupting other treatments, particularly when it comes to serious or chronic illness.

The Center to Advance Palliative Care (CAPC) has developed a definition based on evidence from scientific literature and the organization’s own research.

“Palliative care is specialized health care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family,” according to CAPC. “Provided by a specially-trained team, palliative care specialists work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at point in a serious illness and can be delivered with curative treatment.”

The point about basing palliative care on the needs of the patient, rather than prognosis, is important. One of the hardest barriers to expanding palliative care is that people often conflate it with hospice, for which regulation and clinical practice require a six-month terminal prognosis.

The World Health Organization (WHO) has also developed a definition, though some question the evidence base the organization applied. According to WHO, palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Patients and families who not yet facing end-of-life may be put off from choosing palliative care due to misplaced fears that they would have to end curative treatment.

“If patients are not clear about what [palliative care] is — or if it gets co-mingled with hospice — people would likely be concerned about doing that. I think that confusion leads to lack of adoption or an unwillingness to ask questions about it,” John Griscavage, CEO of health care data analytics firm PlayMaker Health, told Hospice News. “There may be a compromised life span, but we could be looking at a period of five to 10 years rather than a course of six months. People really don’t understand how important it could be for quality of life.” 

A Journal of Palliative Medicine study, published in April, found that as many as 71% of people in the United States have little to no understanding of what palliative care is, including many clinicians in a position to refer patients to palliative care or hospice.

Close to 60% of patients who would benefit from palliative care do not receive those services, despite the availability of community-based palliative care as well as hospital-based palliative care, according to a recent report from the New England Journal of Medicine Catalyst Insights Council.

“It causes confusion when everybody is saying a different thing. [Palliative care] is a team approach. There are many things that you need to include to really understand what [palliative care] is if you are not in the field,” Lisa Morgan, director of marketing and communications for CAPC, told Hospice News. “Research has shown us that discussing end of life in the context of explaining palliative care — even when you are just saying that it is not end-of-life care — just reinforces the misperception. That’s a major reason that we need to go with the evidence-based definition. If people use it they won’t accidentally mix the messages.”

Lack of education is just one of several barriers to the adoption of an industry-wide standardized definition. Even in light of advocacy efforts by groups such as CAPC, one clear barrier is that no single organization exists that can build consensus at the necessary scale.

The term “palliative care” is a descriptor, not a brand that any entity can own or promote. While this doesn’t detract from the service’s value, it can complicate efforts to standardize its meaning.

“The No.1 barrier is that no one entity owns the field of palliative care of course. There are many organizations and many different kinds of providers providing palliative care,” Morgan told Hospice News. “In palliative care, there is no one overseeing body. The big barrier here is getting people to understand what it means to have a common definition, why it’s important, and how to adopt it.”