Advance directive completion rate low among African Americans with cancer
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Few African American individuals with cancer completed advance directives despite a high level of advance care planning readiness in this population, according to results presented at the virtual Oncology Nursing Society Congress.
“We were pleased to see higher rates of advance care planning conversations and advanced directive completion in our sample compared with national averages. We suspect this may be due to the setting of an academic medical center with robust palliative care services,” Jeannette M. Kates, PhD, CRNP, AGPCNP-BC, GNP-BC, associate professor and program director for adult gerontology and primary care nurse practitioner at Thomas Jefferson University College of Nursing, said during a presentation. “Interestingly, though, there was a moderately high level of advanced care planning readiness, and we wonder why advanced directive completion was not higher.”
Kates and colleagues hoped to analyze whether several variables predicted advance directive completion; however, they were unable to enroll a sufficient sample size to identify associations.
The death rate among people with cancer is higher for Black patients than any other racial or ethnic group.
Prior research yielded “consistent evidence” that suggests African Americans are less likely than white individuals to engage in discussions about goals of care, complete advance directives, or enroll in palliative care or hospice. Previous studies also identified Black race as an independent predictor for low rate of advance directive completion, according to study background.
This may contribute to why African American patients receive higher-cost, lower-quality care in the last months of life as characterized by untreated pain, avoidable hospitalizations, poor provider-patient communication and lower likelihood of hospice enrollment, Kates said.
Kates and colleagues conducted a pilot study to assess the associations between medical mistrust, decisional control preference and advance care planning readiness among African American individuals with cancer.
The study followed a cross-sectional, descriptive, correlational design. Investigators assessed patients using a demographic questionnaire; the Group-Based Medical Mistrust Scale, which measures race-based medical mistrust; the Control Preferences Scale, which measures the degree of control a person wants to assume in decision-making about their medical treatment; and the Advance Care Planning Readiness Scale, which measures readiness of patients to discuss advance care planning issues.
Researchers determined a sample size of 125 patients was needed to ensure appropriate power for correlational statistical analysis for each of the scales and subscales used.
Due to slower-than-expected recruitment and the end of grant funding, Kates and colleagues did not achieve their intended sample size, making the study a descriptive study.
Kates and colleagues recruited 66 patients (mean age, 55.7 years; range, 22-83; 68.1% men) with cancer from the NCI-designated Sidney Kimmel Cancer Center at Thomas Jefferson University Hospital. All patients self-identified as African American or Black.
The most common diagnoses in the cohort included breast cancer (33.3%), hematologic malignancies (22.7%) and gastrointestinal cancer (10.6%). Two-thirds (68%) were receiving active treatment.
The majority of study participants (71.1%) had not graduated college, and more than half (53%) reported annual income less than $20,000.
Less than half (43.9%) of study participants reported having an advance care planning conversation with a health care provider at any time. About one in five (22.7%) had completed an advance directive.
“Interestingly, almost 11% of participants did not know if they had an advance care plan,” Kates said.
Results showed the study participants demonstrated moderately high advance care planning readiness (mean score = 39.2 ± 8.6). However, they tended to prefer shared responsibility for treatment decision-making (mean score = 2.69 ± 1.1 on a scale of 1 to 5) and exhibited moderate levels of medical mistrust (mean total score = 29.5 ± 5.3; support subscale, mean = 7.8 ± 1.9; suspicion subscale, mean = 11.2 ± 4.6; discrimination subscale, mean = 10.5 ± 3.8).
“The level of medical mistrust was consistent with what has been demonstrated in the literature,” Kates said. “This is concerning, though, because we were in an urban setting with a diverse patient population and do have a strong presence in the community.
“Our sample did show a greater tendency toward shared decision-making compared with much of the literature, which shows more of a passive role,” Kates added. “Again, we wonder if this is a product of the academic medical center location.”
In addition, the instrument used to measure advance care planning readiness had not been well-validated among non-white participants, so that may have affected results, Kates said.
Researchers were disappointed they did not recruit a sufficient sample size to determine correlations between the variables examined and advance care planning, Kates said. Further research with a larger sample size may help determine what barriers exist to advance directive completion, she added.
“Given that this was a small sample from an urban academic medical center, we cannot make any generalizations or sweeping conclusions,” she said. “However, it would be interesting to explore further potential correlates to medical mistrust at the institutional or provider level. The majority of our participants had lower socioeconomic status, so we are not sure if repeating the study with a more socioeconomically diverse sample of African American patients may yield different results.”
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Kates J, et al. African American patients with cancer and advance care planning: Where is the gap? Presented at: Oncology Nursing Society Congress (virtual meeting); April 20-29, 2021.
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