As the U.S. population becomes increasingly diverse, minorities are strikingly underrepresented in hospice and palliative care programs. Health care disparities are commonly documented for African-Americans, Hispanics, and other groups compared to whites across a range of diseases, including cancer and cardiovascular disease. Similarly, studies have consistently demonstrated a disparity in hospice use of older adults within minority groups than for whites across diagnoses, geographic areas, and settings of care. It is for this reason I wanted to put together something that highlights some of the barriers and benefits of palliative and hospice care among minority groups.
While the list of barriers to the use of palliative care by minorities can be extensive, I will try to focus on those that are more prominent and have been researched in some way. Several factors may account for underutilization of hospice care among specific minority groups. Some of these include confusion about terminology (both medical and non-medical), misperception about the intent and scope of care, spiritual and religious beliefs, and mistrust of the motives and services involved.
Studies have commonly shown a disproportionate gap in knowledge about palliative care among minority older adults. Research has shown that many African-Americans often do not have the information they need to make decisions about hospice care. Specifically, they lack knowledge of the nature of hospice services, possible locations where they can receive hospice care, and information on how they can pay for hospice.
Also, the confusion about terminology (e.g. hospice vs. palliative care) and misperceptions about the intent and scope of hospice and palliative care are deep-rooted among minorities. These services are often thought to be for patients with only terminal or malignant diagnoses (such as cancer), or they are believed to only be administered in an inpatient hospital setting.
Other research suggests that within certain cultures, especially within minority communities, spiritual and religious beliefs may conflict with the goals of palliative care. Spirituality is a large component of many cultures. One study found that within African-American culture many families would pray for a miracle rather than accepting death through hospice often because the latter was looked at as “giving up”. Other studies have shown that in many cases African-Americans also value caring for and being cared for by family member. They view this as a way to express respect and dignity for loved ones and for this reason steer clear of hospice and palliative care.
Mistrust of the health care system due to past injustices in research (e.g. The Tuskegee Experiment, Henrietta Lacks, Cold War Radiation Tests, etc.) and ongoing disparities have also led to concerns about forgoing palliative or hospice services. Most cultures trust loved ones to make the best end-of-life decisions on their behalf, and minorities have displayed this concept far more frequently than whites. As a result, many of these cultural groups may use advanced directives less often as well.
Studies also consistently document greater preference for life-sustaining therapies regardless of prognosis among African-Americans and Hispanics compared to whites. So uncertainty of disease prognosis poses an additional barrier for physicians, patients, and families alike. Unpredictable disease courses, physician overestimation of remaining life expectancy, and a lack of familiarity with various prognostic tools can all play a role in the decreased minority utilization of palliative and hospice services.
Other beliefs that may present a barrier to the use of palliative care include less positive attitudes toward disclosure of terminal illness among specific minority groups, concerns about cost and insurance coverage of the services, and the absence of minority staff, interpreters, and community involvement among the organizations providing the services.
Palliative care aims to relieve suffering by identifying, assessing, and treating pain and other physical, social, and spiritual problems. It often improves the quality of life for patients with life-threatening illnesses and their families.
Hospice is a type of palliative care that can be provided when curative treatment is no longer found to be beneficial or desired, and when life expectancy is measured to be several months or less. It supports patients and their families while focusing on symptom relief and comfort.
Palliative care can be provided whether an illness is potentially curable, chronic, or life-threatening, and can be administered in conjunction with curative-aimed therapies at any stage of the illness.(6) Both can be provided to patient and families at home or in skilled nursing facilities and studies have shown that patients who receive hospice care have improved quality of life, with less depression and symptom burden.
Patients often feel more in control while receiving these services and are able to avoid risks associated with treatment and hospitalization. Small studies of home-based palliative care and inpatient palliative care consultation have reported favorable outcomes for African-Americans, Hispanics, and Asians/Pacific Islanders, including increased satisfaction, greater rates of home deaths with loved ones present, and increased documentation of patient treatment preferences.(5)
It should also be known that patients with a terminal illness do not usually have to pay for hospice care. These costs are covered by Medicare through the Medicare Hospice Benefit, Medicaid in most states, and The Veteran’s Health Administration.
According to Medicare.gov, depending on the terminal illness and related conditions, the plan of care your hospice team creates can include any or all the following services:
- Doctor services
- Nursing care
- Prescription drugs for symptom control or pain relief
- Hospice aide and homemaker services
- Physical and occupational therapy
- Speech-language pathology services
- Social work services
- Dietary counseling
- Short-term inpatient care (for pain and symptom management)
- Grief and loss counseling for you and your family
- Medical equipment (like wheelchairs or walkers)
- Medical supplies (like bandages and catheters)
What may be even more shocking is that in a study of patients with metastatic lung cancer, those who received palliative care had improved survival rates compared with matched patients (controls) who received standard treatment. So in some instances terminally ill patients survived longer than those who did not go into or receive palliative or hospice care.
That means more time with loved ones, family, and friends during a difficult but important time in life for these terminally ill patients. More time is something that families will not hesitate to have with those they care for deeply which is perhaps the greatest benefit you can gain from all of this. So one can see how these services may be of benefit to people of different cultures, spiritualities, economic standings, and educational levels.
The take home point from the aversions and advantages of using palliative care and hospice services is that this is not just a simple or easy topic to discuss or think about. The studies that were referenced show that because there are a lot of interesting complexities within different cultures it also does not have a one size fits all solution. It will take efforts from the patient, their loved ones, healthcare professionals, and the organizations providing services to address how beneficial palliative or hospice care might be in an individual setting. As this continues to happen, minority cultures can begin to be more educated about, and accepting of, these services on a more consistent basis.
– Supreme Soul