PALLIATIVE CARE AND HOSPICE

Both palliative care and hospice in the United States originally focused on the care of cancer patients, but now both encompass care of patients with other severe illnesses such as kidney disease or heart disease.

What Is Palliative Care?

Palliative care is a recognized subspecialty by the American Board of Medical Specialties. The word palliative comes from the Latin word palliare, which means “to cloak” or “to disguise.” The purpose of palliative care is to reduce the symptoms of a medical condition in order to provide the patient with comfort (Merriam-Webster Dictionary, 2022).

Palliative care and hospice care are not the same (see box “Palliative Care vs. Hospice Care” below). Palliative care is not limited to end-of-life care. As people are living longer with formerly fatal illnesses, palliative care may be used to give patients comfort in conjunction with more aggressive, lifesaving measures. It includes:

• Relieving symptoms that negatively affect a patient’s quality of life, such as pain, anxiety, dyspnea, confusion, hunger, thirst, nausea and vomiting, diarrhea, agitation, and sleep disturbances
• Alternative nursing comfort measures that do not require a physician’s order, such as massage, repositioning, heat, ice, a peaceful environment, distraction, guided imagery, and good hygiene

In patients with life-limiting illnesses, palliative care can be used to provide comfort, reduce hospital stays, and reduce the use of healthcare resources. Palliative care is provided in a number of settings such as physician practices, hospitals, cancer centers, dialysis units, homes, hospices, and long-term care facilities (NHPCO, 2022b).

Palliative care’s focus on communication in addition to pain and symptom management occurs long before the end of life. Primary care providers explore their patients’ values, cultures, and goals in deciding how aggressive to be in treating diseases such as cancer and caring for the patient during treatment. Palliative care workers provide social and spiritual support for both the patient and the family in a team-based approach to care delivery.

Palliative care for those with life-limiting illness ideally begins at the time of diagnosis. Unfortunately, however, referrals to palliative care tend to occur late in the trajectory of illness. This may be related to the misperception of palliative care as “giving up.” Some patients, families, and healthcare professionals may believe that trading aggressive treatment of potentially fatal conditions for improved quality of life will shorten survival and decrease the patient’s lifespan. However, recent studies into the effects of early palliative care show that early introduction of such care leads to improved quality of life and mood and may even extend life as the patient feels better (NCI, 2021).

Initially, the introduction of palliative care to ICU patients helped to facilitate the patient’s progression to a medical-surgical unit and possibly discharge to home on hospice care. This sort of care has morphed into the use of palliative care for resident ICU patients for comfort measures and family support. The symptoms that are treated by palliative care include targeted analgesia, terminal sedation (to the point of unconsciousness for end-stage patients), management of dyspnea, and determination of do-not-resuscitate (DNR) status or choice of extraordinary measures. The American College of Critical Care Medicine recommends early palliative care to reduce the cost of care and shorten the ICU length of stay (Pan et al., 2022).

An assessment of the patient and family’s needs for palliative care and support is an important part of planning the best care for the end of life.

ACCESS TO PALLIATIVE CARE “REPORT CARD”

Grade	Hospitals with Palliative Care Programs (percentage by state)
(CAPC/NPCRC, 2019)
“A” Top performers (programs in 81%–100% of hospitals)	Delaware, 100% New Hampshire, 100% Rhode Island, 100% Vermont, 100% Connecticut, 95.8% Maryland, 95.0% Utah, 92.9% Wisconsin, 92.7% New Jersey, 91.8% Massachusetts, 90.7% Oregon, 88.9% South Dakota, 88.9% Washington, 88.9 % Virginia, 86.5% District of Columbia, 85.7% North Dakota, 85.7% Ohio, 84.8% Nevada, 84.2% Illinois, 81.6% New York, 80.8% Colorado, 80.6%
“B” On their way (programs in 61%–80% of hospitals)	Arizona, 79.4% Nebraska, 77.8% California, 77.3% Maine, 76.9% Pennsylvania, 76.6% Minnesota, 76.3% Michigan, 75.4% Missouri, 71.2% Iowa, 70.4% North Carolina, 67.6% Hawaii, 66.7% Indiana, 66.7% Idaho, 66.7% Georgia, 65.0% Florida, 64.5% Tennessee, 61.7% Louisiana, 61.4% South Carolina, 61.4%
“C” States in the middle (programs in 42%–60% of hospitals)	Montana, 57.1% Kentucky, 57.1% Kansas, 56.7% West Virginia, 56.5% Texas, 52.2% Alaska, 42.9% Arkansas, 41.2%
“D” States that need significant improvement (programs in <40% of hospitals)	Alabama, 39.3% New Mexico, 38.5% Oklahoma, 37.5% Wyoming, 37.5% Mississippi, 33.3%

What Is Hospice Care?

Hospice is considered the “gold standard” for end-of-life care. The central paradigm of hospice is that each person is entitled to a high quality of life using a holistic approach and that families are entitled to the support necessary to allow that to happen (NHPCO, 2022c).

In part, hospice care provides a delivery system for the palliative care services described above. However, hospice requires determination from a physician that an individual’s life expectancy is less than six months. (Or if the patient lives beyond six months, they may remain in hospice unless they choose to no longer participate.)

Hospice care is based on an interdisciplinary approach that includes physicians, nurses, spiritual counselors, social workers, home health aides, bereavement counselors, trained volunteers, and speech, physical, and occupational therapists, if needed. The team develops an individualized care plan with family caregivers as shared decision makers to meet each patient’s needs for pain management and symptom control. When the patient is cared for at home, hospice staff is on-call 24 hours a day, 7 days a week (NHPCO, 2021).

The services delivered by a hospice multidisciplinary team include:

• Managing the patient’s pain and symptoms
• Assisting the patient and family with the emotional, psychosocial, and spiritual aspects of dying
• Providing needed drugs, medical supplies, and equipment
• Instructing the family on how to care for the patient
• Delivering special services like speech and physical therapy when needed
• Making short-term inpatient care available when pain or symptoms become too difficult to treat at home or the caregiver needs respite
• Providing bereavement care and counseling to surviving family and friends
  (NHPCO, 2021)

Many people mistakenly think the term hospice refers to a place. Although there are some residential hospice facilities, most hospice care takes place in the patient’s home or the home of a loved one, and less frequently in hospitals and nursing homes.

Hospice is also not just for people with cancer. In fact, the majority of hospice recipients in 2019 were people with a noncancer diagnosis: dementia (20.9%), respiratory (7.4%), circulatory/heart (6.4%), stroke (5.4%), and chronic kidney disease (1.6%) (NHPCO, 2021).

Participating in hospice care allows dying patients more time to spend with family and loved ones rather than focusing on medical care. It is far less expensive than other types of end-of-life care (e.g., aggressive chemotherapy, intensive care), and hospice patients are more often able to die at home (NHPCO, 2021).

The Medicare hospice benefit, instituted in 1983, guarantees comprehensive, high-quality care at little or no cost to terminally ill Medicare beneficiaries and their families. Hospice is paid for by Medicare funds in 99% of all such cases (NHPCO, 2022a).

“Open-Access” Care

Programs called open-access hospice, bridge hospice, concurrent care, or outpatient palliative care offer terminal patients both disease-modifying and comfort-focused hospice care in their home, nursing home, or assisted-living facility. Patients may be on hospice and continue to receive curative medical treatments such as IV antibiotics, IV nutrition, IV cardiac medications, ventilators, chest tubes, hemo- or peritoneal-dialysis, palliative radiation, or biological response modifiers such as Epogen, Neupogen, or Procrit. Patients also have access to an interdisciplinary team of experts to address psychosocial and special care needs. The hope is that these new programs will encourage more patients and their families to enter hospice earlier and avoid the costly final weeks of hospitalization that so many Americans experience at the end of life (accentCare, 2022).

Open-access programs are available to those without the ability to pay and are usually available through larger hospice facilities. Smaller agencies, various visiting nurse associations, or home health agencies may provide a program of palliative care for terminal patients and their families that is not restricted by the expectation of death within six months or the requirement to forego life-prolonging treatments.

The Medicare hospice benefit (MHB) is the main method of payment for hospice care. Since the MHB per diem payment structure does not allow some costly palliative treatments, open-access programs can “bridge” the period between hospitalization and aggressive treatment and hospice care at the end of life. One quarter of hospices have open-access care (CMS, 2022).

Paying for Hospice Care

Medicare, Medicaid (in most states), the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations pay for hospice care. Community contributions, memorial donations, and gifts allow many hospices to provide free services to patients who cannot afford payment. Some programs charge patients according to their ability to pay on a sliding scale (ACS, 2019).

According to the Patient Protection and Affordable Care Act of 2010, the majority of patients in hospice care are covered by Medicare. To qualify for the first 180 days of hospice care, the patient’s physician and the hospice medical director (also a physician) must see the patient and certify that the patient has less than six months to live if the disease runs its normal course. The hospice doctor or nurse practitioner must recertify the patient in a face-to-face visit before each benefit period after that. Medicare offers a one-time-only hospice consultation with a hospice medical director or hospice doctor to discuss care options (ACS, 2019).

Hospice agencies receive per diem payments that vary according to the site where services are received and any other insurance coverage the patient may have. The payment varies according to state and county. For example, in 2022, in the San Francisco-Redwood City-South San Francisco area in California, the payment for routine home hospice care was $316.81/day for the first 60 days of care and $259.36/day after that. Payments are used to manage all care related to a patient. The benefits continue, provided that physicians certify that the patient continues to meet the eligibility requirements (after the initial six months). Medicare enforces an aggregate cap for agencies, effectively limiting the total amount they can receive per patient. The 2022 cap was $31,297.61 for the whole year (CGS, 2022).

Hospice services covered by Medicare are listed below. In addition, many private healthcare plans and Medicaid cover hospice services.

All Medicare-certified hospices are required to employ physicians and nurses with special expertise in pain management and symptom relief. Nonpain symptoms include (but are not limited to) constipation, dyspnea, nausea and vomiting, dry eyes, and dry mouth. Bereavement and spiritual counselors are also available to help the dying and their families explore their needs and preferences as they come to terms with death.

Disparities in Palliative and Hospice Care

Variation in sociodemographic factors, clinical factors, physicians’ beliefs, and the availability of services all contribute to the wide variation of hospice services received by end-of-life patients. Areas of higher socioeconomics with regard to healthcare spending proved to have physicians who professed to be less knowledgeable about and less comfortable with introducing hospice to their patient’s treatment plans (Wen et al., 2019). Hospice is a less costly means of treatment for terminally ill patients, which may also explain its prevalence as a method of treatment.

GEOGRAPHIC DISPARITIES

Access to palliative care and hospice programs varies from state to state and between rural and urban populations. States with more concentrated population centers have a greater number of clinical settings other than patient’s homes in which hospice care can be provided (Sengupta et al., 2022).

A nationwide survey of the 4,840 Medicare-certified hospice programs in the United States revealed wide geographic variation in the prevalence of these programs (NHPCO, 2021). Medicare patients in rural areas are much less likely than those in metropolitan areas to use hospice care. Discrepancies also exist in the provision of palliative care (see also “Access to Palliative Care Report Card” earlier in this course).

RACIAL/ETHNIC DISPARITIES

Disparities between White and non-White populations exist across the spectrum of healthcare, including end-of-life care. Most patients express a wish to die at home in the event of a terminal illness and not to receive life-prolonging drugs or mechanical ventilation. However, Black families were less likely than White families to receive information about what to expect during end-of-life care. Black patients were more likely than White patients to be admitted to the emergency department, to be admitted to the hospital, and to prefer spending their last days in the hospital (Bezargan & Bezargan-Hejazi, 2021).

Racial and ethnic minority patients are 22% less likely than Whites to request hospice services prior to death. African Americans and Asian/Pacific Islanders are underrepresented and are less likely to die at home or under hospice care (Paredes et al., 2020; Stephens et al., 2020).

National statistics found the percentage of Medicare decedents using hospice by race to be Caucasian (53.8%), Hispanic (42.7%), Black (40.8%), Asian-American (39.8%), and American Indian/Alaskan Native (38.5%) (NHPCO, 2021). White patients are also much more likely than African American patients to have admissions to hospice in counties with more physician specialists and more hospital beds (Bezargan & Bezargan-Hejazi, 2021).

Other disparities in end-of-life care include lack of adequate pain care and poor management of pain by healthcare practitioners (NIH, 2022a). Hispanic and non-Hispanic Black patients are more likely to report more pain sites, worse pain intensity, and higher levels of pain. They were also more likely to have concurrent depression and pain self-efficacy than White hospice patients.

Other factors contributing to disparities include lack of knowledge about end-of-life care options, mistrust of the healthcare system, and poor communication between clinicians and patients. Hospice care may be perceived as a luxury in some communities, even though Medicare and Medicaid benefits require little out-of-pocket expenditure.

Language differences can lead to misunderstanding and misinformation that affect medical decision-making. For example, the word hospice may be translated to hospicio in Spanish, meaning “orphanage” or “place for poor people or poorhouse” (Reverso Dictionary, 2022).

Recent studies show minority cultures, such as Latinx and African Americans, use hospice services to a lesser degree than White patients. African American patients may suspect that since hospice care is less costly than more aggressive care, it is being offered for the financial gain of the hospital. They may also feel that hospice care is being offered to deprive them of the more acute care they deserve. African American, Hispanic, and other racial minorities may also believe that the absence of lifesaving treatments is forbidden by their particular religion (Bezargan & Bezargan-Hejazi, 2021).

Black and Latinx people are more likely to consider religion/spirituality as important when compared to White people and less likely to use hospice or palliative care services. Latinx patients are also more likely to rely on family-based decisions at the end of life than to make autonomous choices. Some Asian/Pacific Islanders are also less likely than White people to use hospice or palliative care services (Stephens et al., 2020).