Knowledge of and Attitudes Toward Hospice, Decision-making Around Hospice in Older Black Adults
Phase: NA
Conditions: Hospice Care, Decision Aid, Decision-Making, Aging, Knowledge, Attitude
Sponsor: University of Colorado, Denver

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w 
COMIRB Protocol 
COLORADO MULTIPLE INSTITUTIONAL REVIEW BOARD 
CAMPUS BOX F-490    TELEPHONE:  303-724-1055  Fax:  303-724-
0990 
 
 
 
Protocol #: 23-0899 
Project Title: Underutilization of Hospice Care in Older Black Adults 
 
 
 
Principal Investigator:  Channing E. Tate, PhD, MPH 
Version Date: 03.21.23 
 
 
 
 
 
  
 
I. Hypotheses and Specific Aims: This research aims to recruit a nationally representative 
sample of older Black adults to assess their knowledge, opinions of hospice, decision making 
agency, and evaluate if the hospice PtDA improves these outcomes. The larger sample will 
support exploration of important subgroup variations such as socioeconomic status and 
geography (e.g., urban vs rural settings) that my prior research was unable to address. 
 
Aim 1: To assess baseline hospice knowledge, opinions of hospice, and decision self-efficacy in 
a nationally representative sample of Black adults aged 65 and older. 
 
Aim 2: To evaluate the effect of the hospice PtDA on improving hospice knowledge, opinions of 
hospice, and decision self-efficacy in a nationally representative population of Black adults. 
 
Aim 3: To evaluate the appropriateness and acceptability of the hospice PtDA and explore 
specific barriers to hospice qualitatively. 
 
II. Background and Significance:  
Hospice care remains underutilized. The prevalence and severity of chronic and terminal 
conditions continues to grow in the US.1,2 Consequently, there are a greater number of people 
living with these conditions who may benefit from hospice care. Yet, hospice remains an 
underutilized healthcare benefit. Currently fewer than 50% of hospice eligible Medicare decedents 
enrolled in hospice prior to death.3,4 Further, one-third of all hospice recipients receive care for less 
than 7 days prior to death.5,6 Short stays in hospice prevent patients and families from benefiting 
from the full spectrum of services offered by hospice care but also imposes strains on Medicare. 
Medicare is the primary payer for persons over the age of 65 and individuals receiving hospice 
care.  
Racial and ethnic disparities in hospice enrollment are striking. The number of Black 
adults reaching the age of 65 is one of the fastest growing demographics in the US. Black adults 
make up 9% of all people over the age of 65 and this will increase to 13% of adults over age 65 in 
2060.7,8 Approximately 24% of all persons over the age of 65 identify as a race other than White. 
One-fourth of Medicare beneficiaries are racial and ethnic minorities, more than 10% of whom are 
Black.9 Yet only about 40% of Black Medicare decedents receive hospice care while 53% of White 
Medicare decedents enroll in hospice.6,10 Black adults experience more mortality and morbidity 
than their White peers and suffer disproportionately from the top three diagnoses of hospice 
enrollees: cancer, cardiovascular disease, and dementia.2,5,7 Further, older Black adults are more 
likely to be diagnosed with more severe forms of disease and be diagnosed later in the disease 
trajectory than older White Americans,2,7,11 thus making hospice care a critical healthcare service in 
this population. The disparities in health between Black Americans and other racial and ethnic 
groups is well documented in the literature.12-15 With respect to hospice, there are several 
misperceptions and mistrust experienced in Black communities. However, there is clear evidence 
that it is possible to overcome these barriers and that Black adults value and benefit from the 
services provided by hospice care.16-20 Yet disparities in knowledge and exposure to hospice 

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prevent many from accessing care21-23 making interventions that build trust and increase 
knowledge and exposure to hospice important to providing the best possible care at the end of life.  
Benefits of hospice care. Hospice provides specialized medical treatment to patients with 
life-limiting diseases by prioritizing quality of life over quantity of life. Research demonstrates that 
Black Americans benefit from hospice care, report improved quality of life outcomes, and report 
receiving better quality of care in hospice compared to non-hospice care,17,24,25 yet very few Black 
adults enroll in hospice care. The reasons driving low enrollment are numerous and multifactorial. 
Some barriers include late referrals from providers, religious and/or cultural beliefs, a perceived 
inherent preference for more aggressive treatments, lack of knowledge about hospice services, a 
prevalence of misinformation about hospice care, and mistrust in healthcare.26-32  Given the 
numerous medical and psychosocial benefits of hospice, the evidence that Black Americans do 
benefit from hospice services and the growing number of Black older black adults experiencing life-
limiting conditions there is an urgent need to devise interventions to make hospice accessible to 
older Black adults.  
 
Shared Decision-Making is a proven effective strategy to improve patient outcomes 
in minoritized communities but is understudied.33-35 Shared decision-making (SDM) is a proven 
and recommended approach to improve patient-provider communication, patient agency and 
autonomy, to build trust, and to reduce decisional conflict in persons making complex medical 
decisions.35 One common SDM technique is the use of patient decision aids (PtDAs). PtDAs 
provide information on treatment options, help elicit patient values, and facilitate deliberation 
between patients and providers on treatment choices.36 PtDAs assume various forms including 
paper (e.g. leaflets, pamphlets, and booklets), electronic media (e.g. audio recordings, videos), and 
web-based interactive portals.35 Seriously ill patients routinely express a desire for SDM at the end 
of life,37  however, to my knowledge our hospice specific PtDA is the only freely available tool 
explicitly designed to support hospice decision-making.38  
The National Academy of Sciences (NAS) highlighted a critical need to improve 
communication around end-of-life transitions and the need for better shared decision making 
around end of life especially among communities of color.39 Additionally, SDM in Black adults is 
understudied33 despite an expressed desire to engage in SDM with their providers.34 This project 
can address the absence of SDM making interventions in Black adults and simultaneously gaining 
data on the barriers preventing Black adults from enrolling in hospice.  
 
III. Preliminary Studies/Progress Report:   
My prior research, (NIA/NIH dissertation award R36AG064135), used a novel hospice 
specific PtDA to improve awareness and decrease misconceptions about hospice in a cohort of 
Black adults aged 65 and older. The hospice PtDA consist of both a paper booklet and video. This 
was the first to quantitatively assessing hospice knowledge in a population of older Black adults.40 
The findings indicated lack of knowledge and misinformation are barriers to hospice use. The PtDA 
reduced these barriers and increased decision-making agency. This study was limited to the 
Denver Metro area and not generalizable to a broader population. 
 
IV. Research Methods 
Overview: There are two primary goals of the proposed study: The first goal is to assess baseline 
hospice knowledge, opinions of hospice, and self-efficacy in making decisions about hospice care 
as a treatment option. The second goal is to determine if a hospice specific PtDA can improve 
hospice knowledge, opinions of hospice, and self-efficacy in making hospice decisions. Both goals 
will use a nationally representative sample of Black and White adults aged 65 and older.  
 
 
A.  Outcome Measure(s):   
• 
Hospice Knowledge Test: Hospice knowledge will be quantitatively assessed using the 23-
item hospice knowledge survey.41 This survey consists of true/false questions, with scores 
ranging from 0 to 23, awarding one point for each correct answer. A higher score indicates 
more knowledge of hospice. The Cronbach’s α = 0.75 indicates a good degree of internal 
reliability.  

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• 
Hospice Beliefs and Attitude Scale (HBAS): Opinions of hospice care will be measured 
using the HBAS. The HBAS is an 8-item scale designed to measure beliefs and attitudes 
regarding hospice care.21 The HBAS is scored from 8 to 40, with a higher score indicating 
more positive views of hospice care. The scale uses a 5-item Likert scale with answers 
ranging from “strongly disagree” to “strongly agree” for all questions. The scale reports a 
Cronbach’s α = .74.  
• 
The Decision Self-Efficacy Scale (DSE): DSE is an 11-item instrument using a 5-point 
Likert scale that measures one’s self-efficacy or confidence in making medical 
decisions.42,43 The DSE has a Cronbach’s α=0.92. 
• 
Medical Mistrust Index (MMI): Medical Mistrust Index (MMI) is a 17-item scale that 
measures mistrust of societal institutions and healthcare. The MMI answers consist of a 4-
point Likert scale. Possible scores range from 5 to 75, with higher scores indicating more 
mistrust. This index helps to determine a correlation between the level of mistrust and 
hospice knowledge. The Cronbach’s α = .76 for the scale indicates acceptable internal 
reliability. 
 
 
B. Description of Population to be Enrolled: A nationally representative sample of 400 
Black adults aged at least 65 will be recruited using the IPSOS Knowledge Panel. 
Participants will be eligible if they are at least 65 years of age, can read and write English 
and self-identify as Black/African American. 
 
C. Study Design and Research Methods   
Design: The proposed project is a randomized controlled trial to determine if the hospice 
specific PtDA improves hospice knowledge, opinions of hospice, and decision self-efficacy 
in a nationally representative cohort of 400 Black adults aged 65 years or older.  
 
Aim 1 consists of a baseline measurement of hospice knowledge, opinions of hospice, and 
decision self-efficacy (survey instruments described above) in making decisions about 
hospice care. A total of 400 participants will be enrolled at baseline and complete the 
baseline surveys. 
 
Aim 2 Upon completion of the baseline assessment, 200 participants will be randomly 
assigned to review the hospice PtDA. The hospice PtDA exists as a 12-page booklet The 
PtDA is available here: https://patientdecisionaid.org/hospice/. The control group will not 
view the PtDA and will be asked to review an attention control activity similar to the hospice 
PtDA but about dementia care not hospice. The attention control activity is a 8-page 
booklet that is available here https://patientdecisionaid.org/wp-
content/uploads/2022/07/Dementia-Support-Tool-_FINAL_6.1.2022.pdf.  All participants 
will be contacted approximately 30 days after the baseline assessments to complete the 
follow-up surveys. Participants will receive $5 for completing the baseline visit and an 
additional $5 for completing the 30-Day Follow-Up for a total of $10 for completing the 
study. 
 
Aim 3 consist of up to 20 qualitative interviews with participants in the intervention arm 
who saw the hospice decision aid. The purpose of this aim is to evaluate the PtDA for 
appropriateness and acceptability. The PtDA was intentionally designed to be general and 
not culturally tailored to any specific group or disease process. These interviews will 
provide data on any modifications or revisions that may make the decision aid more 
appropriate for use in a population of older black adults. Individuals completing the 
interviews will receive a $25 gift card. 
 
 

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Recruitment: Participants will be recruited using Ipsos KnowledgePanel, which is the oldest 
and largest probability-based online panel in the U.S. Ipsos maintains a nationally 
representative panel by using address-based sampling and providing internet access to 
recruited individuals who do not have it. Ipsos guarantees sample demographics (gender, race, 
ethnicity, age, education) and will closely match U.S. census distributions. Eligibility criteria for 
this study include self-identifying as Black or African American and being at least 65 years of 
age. Participants will be excluded if they are unable to read and write English or have a 
cognitive impairment that prevents them from providing informed consent. At the conclusion of 
the 30-day follow-up visit IPSOS will ask respondents in the intervention group if they are 
willing to participate in a qualitative interview (Aim 3). If the respondent consents, they will 
contact the study PI directly to schedule the interview.  
  
 
D.   Description, Risks and Justification of Procedures and Data Collection Tools: 
 
 
    
E.   Potential Scientific Problems:   
 
 
F.   Data Analysis Plan:   
Aim 1: To assess baseline hospice knowledge, opinions about hospice, and decision self-
efficacy in a nationally representative sample of Black adults aged 65 and older. 
   -Quantitative Analysis: To achieve an alpha of 0.05 and a modest effect size of 0.3, a 
power analysis completed in SPSS44 yielded a required sample size of 139 individuals per 
group. Thus, the project will recruit a total of 400 participants (200 per group) to account for 
potential losses to follow-up. The literature on SDM and PtDAs varies in what is an acceptable 
effect size for increasing patient knowledge with PtDA interventions from 10% to 65%.35 I 
hypothesize that baseline knowledge will be low in this sample and based on the results of my 
prior work I am proposing a modest effect size of 0.3 for this project. Differences in mean 
scores between socioeconomic variables (e.g., income, education, zip code) and location (e.g., 
urban vs rural) will be evaluated using independent t-tests or X2 where appropriate. 
Additionally, multiple regression models will be used to assess differences between and within 
groups.  
 
Aim 2: To evaluate the effect of the hospice PtDA on changing hospice knowledge, opinions of 
hospice, and decision self-efficacy in a population of Black and White adults aged 65 and 
older.  
-Quantitative Analysis: Differences will be evaluated both between and within groups using 
paired and independent t-tests, respectively. Additionally, multiple regression models will be 
used to assess differences between groups pre/post-test.  
 
Aim 3: To further understand the specific barriers to hospice enrollment and to elicit feedback 
about the appropriateness and acceptability of the PtDA I will conduct qualitative interviews 
with a subset of up to 20 participants in the intervention group who reviewed the PtDA.  
-Qualitative Analysis: The interviews will be approximately 30-60 minutes. Recorded and 
transcribed verbatim. All interviews will be entered into Atlas.ti 9.0 (GmbH, Berlin) Atlas.ti was 
used for the qualitative analyses. The analysis will use inductive and deductive content 
analysis.45-47 The deductive approach evaluate the appropriateness of the PtDA by asking 
questions about the length of the PtDA, the clarity of how information was presented and its 
utility in making decisions about hospice care. Feedback and concerns will be incorporated in 
future versions of the PtDA in preparation for broader dissemination and implementation of the 
PtDA. The inductive approach allows for other domains not previously identified to emerge, 
such as potential misconceptions or fallacies expressed by participants. Analysis will be done 
by systematically organizing the data through open coding and repeated comparisons across 
coded data to identify the key themes. 

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G.  Summarize Knowledge to be Gained:   
 
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21. 
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