End of Life Decision-Making in African Americans Overcoming Disparities

End of Life Decision-Making in African Americans Overcoming Disparities

The PICO question of this project is “In elderly African American patients, with a chronic medical condition, does having End of Life Care discussions with a healthcare provider increase the likelihood that a patient and /surrogate decision maker will be comfortable stating his or her End of Life Care wishes and making an Advance Directive (AD) ?”

Introduction

The average United States life expectancy has dramatically increased over the last few yeas due to advancements in healthcare treatments and technology, improved living conditions, better nutrition, and increased utilization of disease prevention measures, e.g., screenings and immunizations. In 2016, African Americans made up 13.3% of the United States population (United States Census Bureau [USCB], 2017). Approximately 8% of African Americans have completed a living, will compared to 43% of Caucasian Americans (United States Census Bureau [USCB], 2017). The National Hospice and Palliative Care Association (NAHPCA) released an updated annual report on percentages of Medicare recipients receiving hospice and palliative care.  In 2016, 58.6% of hospice recipients were women while 41.4% were men. An average of 64% of hospice recipients were over the age of eighty. Approximately 86.5% of Caucasian Americans received hospice care; in contrast, only 8.3% of African American Medicare patients received hospice care (NHPCO, 2018).

Many African Americans often neglect to engage in end of life care discussions with loved ones and are more likely to receive aggressive life-sustaining treatments during the final months of life, compared to many other racial or ethnic groups; despite the futility of such measures (Johnson, Hayden, True, Simkin, Colbert, Thompson, Stewart, & Martin, 2016). The reasons for underutilization of end of life care options are due to a variety of factors including; limited access to the healthcare system, lack of knowledge regarding clinical diagnosis or disease prognosis, lack of knowledge regarding end of life care options, personal or spiritual beliefs, and/or mistrust (fear) of the healthcare system (Johnson et al., 2016). Continuing aggressive medical treatments in futile situations results in wasted healthcare resources, additional suffering for the patient/family and increased costs (Smith-Howell, Hickman, Mehani, Perkins, & Rawl, 2016).

Avoidance of the healthcare system may contribute to unfamiliarity with disease process and/or prognosis, diagnostics, treatments, and end of life care options. Many African American family members erroneously interpreted placing a loved one in hospice or palliative care meant that they had given up on the patient; some African Americans thought the terms hospice care and palliative care were interchangeable (Yancu, Farmer, Graves, Rhinehardt, & Leahman, 2015). There were also an increased number of African Americans who falsely believed that placing a patient on hospice or palliative care meant the patient would suffer due to being deprived of hydration, nourishment, comfort measures, or pain management (Moss, Deutsch, Hollen, Rovnyak, Williams, & Rose, 2018). Withdrawal of Care, Do Not Resuscitate orders, and Hospice Care may be considered a humane option; particularly, when the patient is suffering, death is imminent, and/or continued medical efforts are futile.

Hospice care is non-curative compassionate care for individuals diagnosed with a terminal illness and life expectancy of six months or less. Palliative care is compassionate comfort care designed to provide relief from distressing symptoms and may be curative or non-curative. Both hospice and palliative care services may enhance a patient’s quality of life via comfort measures such as optimal pain management. Hospice and palliative pare services may also relieve stress among family members and friends caring for the patient because hospice care providers will assist in attending to the patient’s needs. Failing to utilize palliative or hospice care services may needlessly prolong suffering of patient and prolong stress of loved ones due to lack of support (NHPCO, 2018).

The goal of this paper will attempt to answer the following question: illuminate the impact and influence of social determinants of health, i.e., socioeconomic status, spirituality and healthcare system mistrust on end of life decision making in African Americans. This paper will also discuss effective ways of overcoming disparities of end of life decision-making in African Americans.

African American historical beginnings in the United States are vastly different from other minorities or immigrants due to institutions of racism, slavery, discrimination, and segregation. Knowledge of social injustices and healthcare atrocities inflicted on African Americans have been communicated through generations and influence present-day mistrust and/or fear of the healthcare system.

The Tuskegee Syphilis experiment was conducted on hundreds of African American men in rural Alabama between 1932 and 1972. Individuals participated in the study without informed knowledge regarding the true purpose of the experiment. The men were told that they were receiving free medical care from the government; however, the purpose of the experiment was to study the natural progression of syphilis in humans and document findings for research purposes. Once the patients began exhibiting symptoms, they were not treated despite penicillin being readily available. Approximately 100 men died and several others became blind, developed mental health issues, or other complications from the disease (CDC, 2013).

Between 1929 and 1974, nearly 5,000 African American men, women, teen girls, and teen boys were sterilized without their explicit knowledge or consent through North Carolina’s state-sanctioned Eugenics Board. In 2014, the state of North Carolina passed legislation that would compensate living survivors that were subjected to sterilization; however, many of the victims that applied for compensation were denied and subsequently, encouraged to participate in an appeals process, which could take years to resolve. The denials further nurture an environment of government distrust within the African American community. Today, many of the victims range in ages from seventy-to-eighty. Another salient issue, there is no provision that would allow their heirs to receive compensation on victims’ behalf in the event of their deaths prior to a resolution of claims (Kaelber, 2014; Brophy & Troutman, 2016).

Socioeconomic status is determined by an individual’s income, education level, occupation, and other factors, e.g., social status within the community. Socioeconomic status may be a predictor of an individual’s access to education, high-level occupations, health insurance, and quality living conditions. Historical racial improprieties, i.e., slavery and discrimination, that have been perpetuated against African Americans for centuries has drastically hindered the advancement of higher socioeconomic status within this racial group (Townsend, March, & Kimball, 2017).

African Americans and those with lower socioeconomic status are at increased risk of being diagnosed with late-stage disease compared to Caucasian Americans and those with higher socioeconomic status. Many African Americans and low socioeconomic status individuals may forego health screenings or delay going to a healthcare provider due to lack of transportation, inadequate finances, or lack of health insurance. Many African Americans with adequate health insurance and high socioeconomic status may still opt not to see a medical doctor for screenings or preventative care due to a variety of reasons that may include personal or cultural beliefs, spiritual or religious beliefs, or fear or mistrust of healthcare systems (Moss et al, 2018).

Some African Americans believe screenings or seeing a provider is unnecessary unless they are exhibiting disabling or discomforting signs and symptoms of illness (Noh, Kim, Sims, Ji, & Sawyer, 2018). A vast number of African American men and women feel certain examinations, such as gynecological, urological, and colorectal examinations are ‘intrusive’ and will decline to undergo. Sadly, late diagnosis of certain diseases, such as cancer, can often mean advanced progression resulting in high morbidity and mortality rates (Moss et al, 2018). Rhodes et al., (2015) conducted a qualitative study involving 12 healthcare providers and their perspectives on why they believed African Americans utilized end of life care options at a lower rate than other ethnicities. The providers that participated in the study concluded that lack of knowledge about clinical prognosis and end of life options, personal beliefs, spirituality/religion, and mistrust of the medical system were the primary reasons many African Americans patient/families failed to utilize services.

Spirituality and religion may have a major impact on some African Americans faced with end of life decision-making due to faith or belief that God can and will heal them. Rather than relying on the healthcare providers knowledge or recommendations, many African Americans choose to rely on their own beliefs or recommendations of a trusted family member, friend, or spiritual leader. A common belief among many African Americans is that healthcare providers are trying to play the role of God; therefore, God is the ultimate healer and has the final say on whether a person will live or die (Johnson et al., 2016).

Educational factors that may influence end of life decision-making may include lack of knowledge regarding the overall purpose advance directives and hospice care/palliative care. Some African American patients and family members incorrectly equate end of life options as a form of euthanasia or devaluation of a loved one’s life. Other contributors, such as poor communication between the patient and family members; the patient and healthcare providers; the healthcare provider and the patient; and the family members amongst each other, may be the most significant factors contributing to the reluctance to engage in end of life decision-making (Smith-Howell et al., 2016).  Further mistrust may be fostered between healthcare workers attempting to persuade discussions of end of life care options with patients and family members who are simply not interested. Very nice section summarizing the various SDOH and their impact

Interventions to Impact Social Determinants of Health

Healthcare providers should learn how to comfortably and compassionately engage in end of life care discussions with family members to clarify ambiguities and explore personal, cultural, or religious beliefs, which may assist in deciding the best way to proceed (Johnson et al., 2016). Living a long life is highly valued within the African American community, even in situations where the patient’s quality of life is extremely poor. Providers should feel comfortable characterizing and discussing quality of life versus quantity of life with patients and family members when engaging in communications about disease progression and overall prognosis with emphasis placed on quality of life. Providers have the option of making referrals or deferring questions to the Case Manager, Social Worker, or Palliative/Hospice care provider during situations in which family members trust one provider’s explanations over another (Rahemi, Williams, Tappen, & Engstrom, 2018).

Rhodes et al. (2015) conducted a study exploring barriers to end of life care for African Americans from the healthcare providers’ perspective. The study concluded that culturally sensitive education regarding communication methods might teach providers how to engage in effective and non-offensive end of life care discussions with African Americans. Discussing advanced directives prior to advanced stages of disease progression could provide the patient an opportunity to unequivocally state his or her wishes and complete the necessary documentation to solidify those wishes in writing. A variety of educational methods, e.g., pamphlets, videos, question and answer sessions, may be utilized depending on the patient or family members learning preference (Rhodes et al., 2015). In an effort to avoid misinformation or misunderstanding, providers should consider communicating information in the simplest terms, encouraging open, and encouraging the patient and family members to ask questions to clarify ambiguities (Moss et al., 2018; Smith-Howell et al., 2016).

Moss et al. (2018) conducted a qualitative study involving 18 African American caregivers with the goal of determining their interpretation of End of Life. Some of the caregivers were recruited from Programs of All-Inclusive Care for the Elderly (PACE), while others were recruited across the community from health fairs or a variety of other community events. Many of the responses of individuals that had not participated in PACE were extremely illuminating. A few caregivers felt that end of life meant once the decedent has been buried while some felt that it meant the doctors could no longer help; therefore, it was all up to God. The caretakers that were recruited from PACE had a more in-depth understanding of the meaning of end of life terminology and had participated in end of life pre-planning prior to their loved one’s death. The Moss study validates the significant impact that communication, education, and training could have in bridging the gap of end of life decision-making in African Americans (Moss et al., 2018).

The hospice/palliative care health care team functions in collaboration with the patient and family to provide end of life care in the setting of choice, which may be a home, nursing home, or hospital inpatient unit. The hospice providers focus on symptom management and may also integrate psychosocial and spiritual support for the patient and caregivers. Spirituality is a component that assists in providing culturally based care. The healthcare provider should inquire about spiritual/cultural beliefs when providing care to the patient and make efforts to incorporate (Yancu et al., 2015).

Smith-Howell et al. (2016) assert that end of life discussions can be very emotional and distressing for all parties involved but they are a vital component in the delivery of compassionate care. Healthcare providers must learn to be cognizant of personal biases when discussing end of life decisions with the patient and family members as misinterpretations of discussions could lead to further suspicions and mistrust (Moss et al., 2018). Enhanced communication regarding pathophysiology of the disease process, treatment options, and prognosis may help bridge-the-gap of mistrust some African Americans have against healthcare providers (Smith-Howell et al., 2016).

Healthcare providers should communicate with additional providers involved in caring for a terminally ill patient prior to discussing end of life care options with the patient and family to ensure conflicting messages are not being conveyed. Conflicting messages may foster mistrust. When discussing end of life decisions with a patient and family members, the healthcare provider may consider encouraging the patient and family members to vocalize their thoughts and feelings (including thoughts of mistrust).  Information obtained by allowing the patient/family member to vocalize thoughts and feelings could assist the healthcare provider in clarifying ambiguities or misinformation. The information gathered could also signal the provider to initiate referrals (Rhodes et al., 2015).

Conclusions and Future Directions

The ideal time to discuss advanced directives with patients is when they are in an optimal state of health and wellbeing. Providers should consider incorporating education of advance directives during annual physical examinations once the patient has reached the age of 18 and deemed competent to make healthcare decisions. The provider can use the opportunity to explain the importance of having end of life care discussions and clarify any ambiguities. Healthcare facilities may also consider live-streaming videos regarding advance directives in patient waiting rooms, inpatient hospital education channels, and have literature available as other means of education (Rhodes et al., 2015).

When discussing advanced directives or end of life care options, healthcare providers should use layman’s terminology, especially when speaking to elderly African Americans or individuals who convey signs that they are having difficulty understanding what is being communicated. Oftentimes, a patient and family member will nod in agreement conveying to the provider that they understand when in actuality they do not fully comprehend. Try to engage in open-ended discussions with the patient and family members whenever possible (Rhodes et al., 2015).

Healthcare providers should be able to empathize and sympathize with patients and family members about fears or concerns after delivering a poor prognosis. Empathy and sympathy may not come naturally to some healthcare providers but repetitive encounters will usually  educating the patient and family member about hospice or palliative care services the provider should communicate that the goal is to ensure that the patient remains comfortable throughout the process and has a peaceful transition (Townsend, March, & Kimball, 2017).result in competency.  Reframing the dying process as a positive or humane option when discussing hospice or palliative care services may be more palatable to some individuals. When

A strong ally for healthcare providers may be a trusted spiritual leader within the African American community. Providing education about advance directives during church-sponsored events, such as health fairs could be beneficial in the education and dissemination of information within the African American community. Healthcare facilities should consider having formalized agreements with spiritual leaders within the African American community to conduct hospitalized patient visits and provide spiritual guidance to patients and family members during times of distress (Townsend et al., 2017). Providers may also consider including a trusted spiritual leader in end of life care discussions if the patient or family requests.

In conclusion, reasons for underutilization of end of life decision-making within the African American community are multifaceted (Smith-Howell et al., 2016). Healthcare workers may have to incorporate a variety of different measures in their practice and communication in an effort establish a trusting partnership among African American patients and family members when discussing end of life care options. Healthcare providers must also know when to concede from engaging in further discussions; particularly, in extremely tense or aggressive situations in an effort to avoid a hostile confrontation. The hospital ethics committee, if available, should be consulted.

References

Brophy, A., & Troutman, E. (2016). Eugenics movement in North Carolina. North Carolina Law Review, 94(6), 1871-1956. Retrieved from http://scholarship.law.unc.edu/cgi/viewcontent.cgi?article=4876&context=nclr.

Johnson, J., Hayden, T., True, J., Simkin, D., Colbert, L., Thompson, B., … Martin, L. (2016). The impact of faith beliefs on perceptions of end-of-life care and decision making among African American church members of end-of-life care and decision making among African American church members. Journal of Palliative Care Medicine, 19(2), 143-148. http://dx.doi.org/10.1089/jpm.2015.0238.

Moss, K., Deutsch, N., Hollen, P., Rovnyak, V., Williams, I., & Rose, K. (2018). Understanding End-of-Life Decision-making Terminology Among African American Older Adults. Journal of Gerontological Nursing, 44(2), 33-40.

National Hospice and Palliative Care Organization. (2018, March). NHPCO Facts and Figures: Hospice Care in America. Retrieved from https://www.nhpco.org/sites/default/files/public/Statistics_Research/2017_Facts_Figures.pdf.

Noh, H., Kim, J., Sims, O., Ji, S., & Sawyer, P. (2018). Racial Differences in Associations of Perceived Health and Social and Physical Activities With Advance Care Planning, End-of-Life Concerns, and Hospice Knowledge. American Journal of Hospice and Palliative Medicine, 35(1), 34-40. http://dx.doi.org/10.1177/1049909116677021.

Rahemi, Z., Williams, C., Tappen, R., and Engstrom, G. (2018). Health-Related Decisions for Serious Illness Among Ethnically Diverse Older Adults. Advances in Nursing Science, 41(1), 84-97. http://dx.doi.org/10.1097/ANS.0000000000000192.

Rhodes, R., Batchelor, K., Lee, S., and Halm, E. (2015). Barriers to End-of-Life Care for African Americans From the Providers’ Perspective: Opportunity for Intervention Development. American Journal of Hospice and Palliative Care, 32(2), 137-143.

Smith-Howell, E., Hickman, S., Mehani, S., Perkins, S., and Rawl, S. (2016). End-of-Life Decision Making and Communication of Bereaved Family Members of African Americans with Serious Illness. Journal of Palliative Medicine, 19(2), 174-182. http://dx.doi.org/10.1089/jmp.2015.0314.

Townsend, A., March, A., and Kimball, J. (2017). Can Faith and Hospice Coexist: Is the African American Church the Key to Increased Hospice utilization for African Americans? Journal of Transcultural Nursing, 28(1), 32-39. http://dx.doi.org/10.1177/1043659615600761

U.S. Public Health Service Syphilis Study at Tuskegee. (2013). Retrieved March 25, 2018, from https://www.cdc.gov/tuskegee/index.html.

US Census Bureau. (2017, July 1). Quick Facts [Press release]. Retrieved from https://www.census.gov/quickfacts/fact/table/US/RHI225216#viewtop

Yancu, C., Farmer, D., Graves, M., Rhinehardt, A., and Leahman, D. (2015). Accepting Transitions: African Americans Discuss End of Life. American Journal of Hospice and Palliative Medicine, 32(4), 380-387. http://dx.doi.org/10.1177/1049909.