Health Care for Black Patients with Serious Illness: A Literature Review

In 2021, CAPC’s Project Equity workgroup conducted a comprehensive literature review to understand what is known about disparities in health care experiences and quality of life for Black people living with serious illness, and their families. This is the first time such a literature review has taken place. The Center to Advance Palliative Care (CAPC) has now released the key findings.

The review included peer-reviewed journal articles from the following sources: PubMed, Scopus, and recommendations from the initiative’s steering committee members. Since “serious illness” was the overarching theme, research on various diseases fell within that umbrella, including cancer, heart disease, dementia, end-stage renal disease, and HIV. The inclusion of a study in these key findings does not imply that CAPC endorses or recommends the article. Please refer to the cited articles for more information on their methodology.

Last updated August 2021

Key Findings

  • Generally, Black patients receive less pain assessment[1] and treatment[2],[3],[4] than their White peers over the course of their serious illnesses.

  • In a 2017 study, researchers found that Black patients were more likely to report pain of any severity than White patients.[5]

  • Other research, however, found no difference in opioid use between racial groups (of stage IV breast cancer patients).[6]

  • Black family members were less likely to have concerns about unmet pain needs when served by hospices with higher proportions of Black patients.[7]

  • Potential barriers to pain management identified for Black cancer patients include patient fear of addiction, a dislike for taking pills, concern about opioid-induced constipation, and the belief that doctors should focus more on curing illness than on pain control.[8]

  • Some participants in a small, qualitative study of Black patients with Sickle Cell Disease reported that they had been accused of pill-seeking behavior.[9]
  • Various studies found that medications used for symptom management (such as benzodiazepines and bowel regimens for opioid-induced constipation), were used less for Black patients.[1],[2],[3],[6]

  • A study of data contained in the Global Palliative Care Quality Alliance’s QDACT Registry reported that Black patients were more likely to have a Palliative Performance Score (PPS) of ≤ 30 at the time of palliative care consultation, illustrating more unmet needs.[5]
  • Qualitative studies found that Black patients identified a “lack of communication” and the absence of positive relationships with their doctors as negative aspects of their care.[9],[10]

  • In a study of the communication skills of hospital-based physicians, lower-quality nonverbal communication (e.g., open body language, physical distance) occurred when interacting with Black patients compared to White patients.[11]

  • In a small study of bereaved Black family members of Black patients, the participants rated the quality of end-of-life communication lower than that for general communication with their health care providers. Lower scores in communication quality were also associated with higher feelings of decisional conflict.[12]

Note: Studies referenced in this section used either the identification of a palliative care consult in the medical record or the presence of the ICD-9 or ICD-10 code for a “palliative care encounter.” Differences in the methodology used to identify palliative care interventions may contribute to the diversity of the results.

  • Across different disease processes, studies have found that Black patients are less likely to receive palliative care than White patients.[13],[14],[15] In one study, none of the Black patients included in their sample of patients with non-traumatic intracranial hemorrhage received a palliative care consult even though their Glasgow Coma Scale (GCS) scores at hospital admission were significantly worse than those of White or Asian patients. The authors wondered if this finding could be due to practitioner bias or patient preference.[16]

  • A 2019 study found that patients treated by hospitals that serve predominantly non-White patients were less likely to receive palliative care (defined as the patient’s goals of treatment being palliative in nature rather than curative), regardless of their race or ethnicity, when compared to patients treated at hospitals that serve predominantly White patients.[13]

  • Other studies, however, found that Black patients were just as likely or more likely to receive a palliative care consult.[2],[17],[18],[19]
  • Several studies found that Black patients, across various serious illness diagnoses, including cancer and severe acute brain injury, were less likely to be referred to hospice[20] or use hospice,[4],[21],[22],[23],[24] as well as more likely to dis-enroll or graduate from hospice services.[25]

  • Other articles found either no statistically significant difference in hospice referral and enrollment[26],[27],[28] or higher referral and enrollment rates for Black patients in certain situations.[29],[30]

  • Barriers to hospice use have also been identified, including discrimination,[31] lack of awareness of hospice services,[32] conflict with religious views,[32],[33] and a desire to continue life-prolonging treatment.[34]
  • A 2018 study of dementia decedents found that Black households provided more informal, and therefore unpaid, caregiving compared to White households.[35]

  • Another study found that when compared to White patients and caregivers, high Black caregiver-reported burden was associated with higher depressive symptoms in the patient. However, caregiver burden overall was similar between the two racial groups.[36]

  • Family resources and capacity and the difficulty of providing care in the home have been identified as barriers to hospice use by Black patients and families.[32],[33]

  • When asked what community resources would help a sample of Black caregivers of dementia patients, responses included entertainment, social, and self-care resources. Black caregivers also noted that the inability to leave their loved one unattended is a challenge to the long-term provision of care in the home. In order to help increase the use of community services, caregivers requested specific eligibility criteria and an indicator of whether the service had dementia care capabilities.[37]
  • Multiple studies found no statistically significant difference in satisfaction (e.g., satisfaction with pain management and hospice care) between Black patients and other racial groups.[38],[39]

  • Various authors reported Black family members to be either more likely[40] or less likely[41],[42] to report excellent care at the end of life.

  • One study found that compared to White patients, Black patients were less likely to receive a visit from hospice staff during their last two days of life.[43]

  • Another study found that Black caregivers reported some better hospice outcomes (e.g., receiving the training necessary to help care for their loved one) than White caregivers when served by the same hospice. However, on average, Black patients were treated by poorer quality hospices (using CAHPS data).[44]
  • Studies have consistently found that Black patients have higher rates of hospitalization,[4],[45] ED visits,[46],[47],[48] and ICU admissions[49],[50],[51] than White patients with similar serious illnesses at the end of life.

  • Several research teams also found Black patients were more likely to die in the hospital than in a hospice facility or at home when compared to White patients.[20],[52],[53],[54]

  • Another study compared the number of times a patient transitioned between care settings (e.g., long-term care facility to hospital) during the last six months of life. On average, Black patients had 3.4 transitions compared to 2.9 for White patients. They also found that Black patients were more likely to have had at least four transitions.[55]

Note: While a greater proportion of Black patients preferred life-sustaining treatment than White patients, it does not mean a majority of Black patients held a given belief. For example, while significantly different, one study found that Black patients had slightly higher odds (20%) of tracheostomy.[21]

  • Several studies found that when compared to White patients, more Black patients state a preference for life-prolonging treatment, with the potential to extend life, over comfort care only.[56],[57] For example, one study of patients with end stage renal disease found that Black patients had higher odds of preferring extending life versus comfort care only if they became critically ill.[57] This could also extend to a preference to spend their last days in the hospital.[58]

  • Not all studies, however, followed this pattern. In one study, researchers provided a list of six health scenarios (e.g., always having severe pain, living in a nursing home for the rest of their lives) to a sample of Black patients living with HIV, and asked which scenarios would be worse than death. Forty-three percent of respondents reported that all scenarios would be worse than death, suggesting a hypothetical future preference for less life-prolonging treatment, or comfort care.[59]

  • In contrast to preferences stated when asked about hypothetical end-of-life decisions in the future, other evidence suggests that compared to White patients, Black patients choose the more life-prolonging treatment in real time when the decision becomes necessary.[60],[61],[62],[63] For example, one study found that compared to White women with metastatic breast cancer (MBC), Black women with MBC had higher odds of choosing life-prolonging treatment.[60]

  • A 2016 systematic review suggested that clinician adherence to the end-of-life preferences of Black patients with cancer was lower than that for White patients.[22]

  • When studying the use of specific life-sustaining treatments, researchers found that when compared to White patients, Black patients were more likely to use breathing support,[50],[64],[65] artificial nutrition,[21],[30] and continue dialysis;[20],[66],[67] more likely to undergo CPR;[49],[68] and less likely to withdraw life-sustaining treatment.[69],[70]
  • In a survey of North Carolina and South Carolina hospices, 72.5% of respondents reported that the number of Black registered nurses on staff was too low for their population. Additionally, more than half agreed that the number of Black social workers, Black chaplains, and Black volunteers were also too low.[71]

  • Many surveyed hospices (in one study, 90%) report providing their staff with cultural competence or sensitivity training in an attempt to improve quality and utilization.[71],[72]
  • Several studies found that expenditures for Black patients living with serious illness or approaching the end of life were significantly higher than those for White patients.[73],[74],[75] A study of lung cancer patients found ICU costs for Black patients to be $4,000 higher than for White patients.[51]

  • In a study of Medicare beneficiaries, Black households were found to provide more informal (and unpaid) caregiving than non-Black families.[35]

  • One study revealed that palliative care consults that included a goals of care conversation resulted in significantly lower acute care costs for White patients, when compared to patients without palliative care consults. This pattern, however, did not hold among Black patients receiving palliative care consultations.[76]

  • Another study estimated that if Medicare hospice utilization for Black patients were equal to that of White patients (current utilization was 2.1% for Black patients compared to 2.9% for White patients), it could result in an estimated savings of $88 million per year for Medicare.[77] This does not account for a shift in out-of-pocket costs for patients and families.
  • Several studies found that Black patients are less likely to have an advance directive,[78],[79] including do-not-resuscitate (DNR) orders,[2],[80] living wills,[81] and health care proxies.[66],[81]

  • When surveying Black patients living with HIV, one study found that more than half of participants (56.2%) did not know what an advance directive or Medical Orders for Life-Sustaining Treatment (MOLST) form were. For those who had heard of ACP, those who involved their caregivers in medical decisions were more likely to have discussed ACP.[82]

  • Potential constraints to participation in ACP included the patient’s belief in its probable futility, medical mistrust (including a belief that an advance directive could result in the inappropriate or racially biased withdrawal of life-sustaining treatment against patient wishes), health literacy, and a conflict with religious beliefs.[10],[83]
  • A 2017 literature review noted social isolation, worry over burdening others, a lack of socioeconomic resources, as well as psychological distress and depression in studies of Black patients living with serious illness.[84]

  • One study found that for older Black men with serious illness, lower scores on mental and physical health-related quality of life were associated with higher levels of income difficulty and low education levels. Income difficulty was determined by participants’ response to the question, “All things considered, would you say your income (a) allows you to do more or less what you want, (b) keeps you comfortable but permits no luxuries, (c) gives you just enough to get by on, or (d) is not enough to make ends meet?”.[85]

  • In a 2020 study, researchers noted that a lack of involvement with a religious congregation was significantly associated with depressive symptoms in a sample of Black patients with cancer when compared to Black patients without depressive symptoms.[86]
  • Medical mistrust based on prior experiences in the health care system was cited in several studies as a barrier to hospice use[33],[34] and ACP.[10],[78],[83],[87]

  • In a qualitative study of Black patients and caregivers, participants stated that they felt that if they completed an advance directive, their health care providers would no longer treat them.[88]

Cultural characteristics, including the importance of the family’s responsibility in taking care of their relatives, religious beliefs, and a discomfort with discussing death, have been identified as constraints on participation in ACP[83] and hospice utilization.[31],[32],[34],[88]

  • Several studies noted that among Black patients, religious views were associated with resistance to ACP[22] and hospice enrollment.[32],[33],[34],[88]

  • Other studies, however, found that strong religious beliefs could support hospice and palliative care discussions,[89] as well as interest in quality of life interventions.[90]

  • A qualitative study found that the distribution of hospice information, when combined with chaplain efforts to support spiritual concerns, could promote hospice use in the Black community.[91]

Citations

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