At the conclusion of this activity, participants will be able to do the following:
- Compare and contrast palliative care and hospice care
- Describe the benefits of palliative care
- Discuss the obstacles of expanding palliative care
- Describe methods for determining a patient’s appropriateness for participation in a palliative care program
Serious illness and dying—frequent companions of getting old—certainly do require great courage. Perhaps this is why our patients tend not to seek out information about those topics. And because many physicians are trained to focus on fighting and curing disease, they may give only passing attention to the emotional, psychological, spiritual, social and symptom needs of the person before them.
The stressors involved in the process of aging are many— denial, logistics and finances, to name a few. Unfortunately, the medical community frequently adds to the list by focusing only on illness and curative treatments. As the illness turns serious, the options are further limited to two: palliative care or hospice. At this point in the treatment continuum, it is important to understand the similarities, differences and appropriateness of these choices at various stages in the disease process.
Palliative Care vs. Hospice Care
Palliative care and hospice are sister practices. Both seek to comfort the seriously ill person. Both use many of the same techniques. Hospice is, in fact, a form of palliative care. In the United States, hospice is defined in federal and state law as palliative care for terminally ill persons with a limited life expectancy, often six months or less. Palliative care, in contrast, is appropriate at any stage in the disease process but is most often called for with seriously ill patients whose life expectancy might be a year or two.
Palliative care and hospice care have many practices in common, including these:
- Both call on plans of care that incorporate the wishes of the patients and families.
- Both engage caregivers beyond physicians and nurses, such as social workers and spiritual caregivers.
- Both involve a range of caregivers in case review and goal modification.
However, despite the similarities, in the United States, the two protocols are usually identified with different caregiving teams. Palliative care is largely a hospital-based, consultative service, closely directed by a physician with support from a multidisciplinary team of professionals, and its expense is often cobbled together from a variety of sources. Hospice care, on the other hand, is largely delivered by professional caregivers wherever the person lives (mostly private homes and nursing homes) and is paid, almost always, by the Medicare Hospice Benefit or other insurance.
Palliative Care: An approach to clinical management that improves the quality of life of patients—and their families—facing problems associated with life-threatening illness; this includes relieving suffering by establishing appropriate goals of care, identifying and treating disabling symptoms and attending to relevant psychosocial and spiritual issues.
Hospice Care: A type of care that focuses on palliation of a terminally ill patient’s discomfort by attending to issues of pain control and emotional and spiritual needs.
Hospice is largely nurse-driven, with the physician playing the role of certifier, prescriber, educator and mentor to the team.
Both entities show considerable variety in practice with hospice largely defined by regulation and palliative care flavored more by the style, knowledge and resources of the directing physician. Without meaning to stereotype either constituency, a grid comparing hospice and palliative care might look like the one presented in Table 1. (Download the full article to read more.)
Benefits of Palliative Care
Palliative care adds many benefits to the patient continuum. These benefits certainly contribute to the fact that palliative care is on the upswing.
A Stepping Stone
Palliative care can accustom the patient and family to having care provided in the home (rather than in the hospital or physician’s office) and to having direct family involvement in caregiving—especially important in times of crisis for avoiding trips to the emergency department and/or hospital readmission. This introduction of home healthcare takes on special meaning when one considers that although most people want to die in the familiar surroundings of their own homes, 80 percent of Americans, nonetheless, die in healthcare facilities of one kind or another, usually hospitals or nursing homes.2
Palliative care can also be a valuable asset when the patient, family or physician is reluctant to use the word “hospice” or even to talk about end-of-life or advance care planning. A stepping stone into palliative care for a few weeks or months can often be a useful segue to the home-based focus on comfort that hospice maximizes.
Continued Curative Care
Many palliative care patients appreciate the fact that, unlike with hospice, curative treatment can continue. (Although several experimental models are now exploring whether hospice use would grow if patients didn’t have to forego curative treatment while in hospice, at the present time, this distinction is a major difference between choosing palliative or hospice care.)
Palliative care often brings a high level of patient/family satisfaction. There are many reasons for this: the lower stress of being in one’s own home; longer and more relaxed visits with caregiving professionals; more communication between professionals, patients and families than is usually found during strictly curative treatment; more attention to the needs and wants of the entire family; and the attention to the patient’s emotional, psychological and spiritual needs.
Obstacles to Expanding Palliative Care
With all these advantages in the use of palliative care, it is reasonable to wonder why its use hasn’t expanded in tandem with the growth in hospice care, which now benefits more than 48 percent of Medicare decedents.3 Several factors include funding, physician concerns, lack of public awareness and the difficulties of delivery of services in home-based care.
Although hospice pioneers made several compromises with legislators in developing the original Medicare Hospice Benefit in the early 1980s (such as its use only with patients who have a life expectancy of less than six months), the resulting program was reasonably well defined and adequately funded. This encouraged an influx of providers and after a significant rate increase in 1989, even greater growth.
On the other hand, palliative care, at present, has no such global reimbursement stream, making it a challenge to establish and sustain programs at hospitals, physician partnerships and other settings. Palliative care is a “hightouch” practice. There is misalignment between the clinical and financial incentives in funding palliative care—the time limitations of fee-for-service funding clashes with the time needed for meaningful communication among the palliative care provider, patient and family.
Further complicating funding is the fact that the use of social workers and chaplains in palliative care usually does not bring in additional revenue from reimbursement sources. Instead, social workers are often part-time or “borrowed” from a hospital, and chaplains are drawn from the community as volunteers—both subject to the caregiver’s availability at a time of patient/family need.
An additional obstacle to the expansion of palliative care comes from physicians themselves. A poll in 2011 by National Journal and The Regence Foundation found that 42 percent of polled physicians had a concern that introducing palliative care could interfere with therapy directed at extending life as long as possible. “Inadequate patient resources” was cited as a concern by 78 percent of polled physicians, perceived lack of reimbursement was cited by 82 percent and “shortage of palliative care physicians and services” was raised by 78 percent.4
Lack of Public Awareness
Lack of public awareness about palliative care discourages its use. A Center to Advance Palliative Care (CAPC) poll with Public Opinion Research in 2011 found that three-fourths of the sample had never heard of palliative care.5 Another study surveyed 800 New York State adults in 2016 regarding palliative and hospice care and found similar results.6
Delivery of Services in Home-Based Care
Home-based palliative care providers find additional barriers to effective delivery of services. Medical records may not be as readily accessible. Physician referrals and payor authorizations may slow the start of service. Time may also prove a challenge—appointment schedules, travel time, on-call service and visit frequency, for example.
One of the greatest difficulties in the home setting may be distinguishing between the need for pain management and for true palliative care, given the increasing concern in our society regarding opioid abuse and diversion. Communicating the value of palliative care will need to emphasize that it is not (and is, in fact, far more than) pain management, even though many people seeking palliative care would do so out of pain management concerns.
Despite these obstacles, palliative care continues to gain ground. The Center to Advance Palliative Care notes that 90 percent of hospitals with at least 300 beds have palliative care programs. CAPC gives New Jersey an “A” in palliative care, with an overall approval score of 91.2 on its scale of 100. Many nearby states also ranked high in the percentage of hospitals with 300+ beds having palliative care programs. Rhode Island, Connecticut and Maryland all rated as “A” with 88.9 percent, 84 percent and 87.5 percent, respectively. Washington, D.C., Delaware and Pennsylvania each got a “B” with 71.4 percent, 75 percent and 68.7 percent, respectively. West Virginia rated a “C” with 55.6 percent of hospitals with 300+ beds having palliative care programs.7
This rating has been achieved through a variety of creative avenues. Although most funding of palliative care is still done through the professional providing services, particularly physicians and advance practice nurses (APNs) through Medicare Part B and private insurers, alternative payment models are beginning to benefit palliative care. Overall movement away from fee-for-service reimbursement structures can accommodate a bit more funding for the added time palliative care teams need with patients and families.
The growth of accountable care organizations (ACOs) in recent years has also helped with funding. Through ACOs, hospital-and system-based palliative care programs can call upon the varied resources found elsewhere in their parent organizations on a case-by-case basis.
While facing funding challenges, prospective administrators have a range of organizational models available for palliative care programs, and each can impact program viability. A few are the following:
- Individual practice provider
- Palliative medicine provider group
- Home health-based
In some of these settings, fledgling palliative care programs can be launched through foundation grants. (History shows, however, that these programs often fade away quickly when the foundation funding ends if sufficient effort has not been made for post-grant maintenance.)
Programs have also contracted with third-party payors and sought support from hospitals and facilities to help make ends meet. Palliative care is especially attractive to private payors because it tends to enhance family satisfaction, prevent medical crisis and deter emergency department visits and hospital readmissions.
Increased attention of policymakers to patient wellness has also benefited palliative programs. The focus of palliative care on restoring and sustaining health is known to deter depression, anxiety and other psychological maladies that clearly affect wellness and a person’s willingness to actively engage in restorative behavior.
And finally, correct determination of a patient’s appropriateness for participation in a palliative care program is key to overcoming obstacles. In curative treatment, the trigger is obvious: a curable disease. In hospice, it is often clear as well: a terminal illness and a life expectancy of six months or less (although prognostication remains inexact, especially for non-cancer diagnoses). However, in palliative care a multiplicity of triggers may indicate the appropriateness of a person for palliative care.
Teams may look at several factors in deciding a patient’s appropriateness. Some use the Karnofsky Performance Scale or the Eastern Cooperative Oncology Group (ECOG) performance status; others use activities of daily living (ADLs). Some turn to the hospice question, “Would you be surprised if your patient died within the next six months?” and expand the timeframe to a survival duration that is indeterminate. The Journal of Palliative Medicine identifies six more factors8:
- Poorly controlled physical or emotional symptoms
- Frequent visits to the emergency department; admission to hospital or emergency department from a nursing home
- One or more hospital admissions within 30 days
- Prolonged hospitalization
- Prolonged intensive care unit (ICU) stay
- Unclear or unrealistic goals of care in curative treatment
Correctly assessing a patient for palliative care is key to building a foundation that will withstand the other obstacles that threaten to undermine a palliative care program. All these positives, negatives and possibilities mean that anyone looking to start a palliative care service should carefully assess risk factors. They are typically higher for palliative care programs than for community-based hospices, because the length of stay in palliative care is often longer than in hospice, long-term funding is less reliable and the field is less defined by regulation (requiring more risk management). Further, palliative care should have specific quality-of-life goals, and care planning to achieve those goals can often be trickier than in curative treatment or even in hospice, where a patient’s decline is fairly predictable.
Despite the obstacles and risks, the use of palliative care continues to grow, for many reasons. One reason, unquestionably, is increasing inclusion of palliative care in medical school curricula. Further support comes from rotations in palliative care and hospice, continuing medical education (CME) and other training such as the End-of-Life Nursing Education Consortium (ELNEC) programs and adoption of Practitioner Orders for Life-Sustaining Treatment (POLST) forms by entire states and healthcare systems.
One of the many areas in which palliative care shines is in advance care planning and assistance in guiding families in end-of-life care decisions. Raising the issue of advance directives in a physician’s office or hospital, where everything and everyone are rushed, can be traumatic in itself. Care planning decisions by patients and families require time, such as that found in communication with patients and families with palliative care, and evolves more naturally in that setting, which focuses on care of the whole person.
Home-based providers, although enthusiastic supporters of advance care planning, are also starting to look at homebased palliative care, incorporating home visits more frequently into the overall palliative care plan. Usually billed under a home health benefit, accrediting organizations are now providing certification for community-based palliative care as an alternative to the hospital-based consultative services found more commonly. Home-based palliative care would surely be a boon for patients who find it difficult to make office visits or who need more time than an office visit can provide. Ideally, home care and hospice providers will lead the way in the development of home-based palliative care, given their experience in providing care in such settings.
Unquestionably, palliative care services are moving toward further growth for many reasons:
- Patients and families appreciate the goal-setting that underlies palliative care, in that it clarifies expectations and gives a different type of hope to many.
- Younger physicians are being trained more often in alternative forms of treatment than their predecessors and in communication and shared goal-setting with patients and families.
- Palliative care enhances the status of the nonphysicians on the caregiving team and gives them a more active role in outcomes, improving staff morale.
- Hospitals are seeking to reduce readmissions—a top goal of palliative care.
- Healthcare systems are looking to reduce costs, a well-established benefit of palliative care.
All those touched by healthcare—patients and professionals alike—are looking at quality-of-life issues. Perhaps more than any other medical specialty, this is what palliative care and hospice focus on. Certainly, better understanding of the field by medical professionals and the general population will help support the growth of palliative care programs and thus improve the quality of life for our seriously ill patients.
Donald L. Pendley, MA, CAE, CFRE, APR, is Director of Hospice and Palliative Care at the Home Care & Hospice Association of New Jersey.