NEW SERIES: A SNEAK PEEK AHEAD OF THE 12TH WORLD RESEARCH CONGRESS ONLINE OF THE EUROPEAN ASSOCIATION FOR PALLIATIVE CARE (EAPC)
There are just 103 days to #EAPC2022! With live sessions on 18 to 20 May 2022, and lots of on-demand content before and after the congress, this is the place of meeting for all of us in palliative care research. Today, Professor Holly Prigerson, plenary speaker, is joined by Dr Alan B Astrow and Dr Paul K Maciejewski in this glimpse of what you can expect from her presentation on 18th May.
Left to right: Holly Prigerson, Alan B Astrow and Paul K Maciejewski
Patients with advanced cancers often seek hope, meaning and comfort from religion and spirituality, particularly as death nears. Unfortunately, while the vast majority of advanced cancer patients (88%) report that religiousness and/or spirituality are important to them, most (72%) also say that the medical system has not met these needs. Support of dying patients’ religious/spiritual needs may prove especially beneficial to patients and family members who are religious, including African American patients who often rely heavily on religion to cope with cancer.
Our research has shown that advanced cancer patients who receive religious/spiritual care are not only more likely to have their spiritual care needs met, but also report less physical pain and are more likely to die where they wish compared to those not receiving such care. We find that healthcare chaplain visits promote patients’ peaceful acceptance of being terminally ill, which has been linked to higher rates of advance care planning (e.g., end-of-life discussions and completion of Do Not Resuscitate (DNR) orders). Advance care planning has proved an effective way to enhance a dying patient’s quality of life and the odds of getting care in line with their preferences (e.g., desired intensive or palliative care). Intriguingly, our preliminary results suggest that healthcare chaplain visits are associated with higher rates of completing DNR orders (AOR=4.50, p=0.03) among African American cancer patients and higher rates of engaging in end-of-life discussions with providers (adjusted Odds Ratio=2.46, p=0.02) among white patients. Thus, visits with healthcare chaplains appear to enhance advance care planning, but in different ways for African American and white cancer patients.
Given a long, disturbing history of medical abuses committed against African Americans (e.g., withholding of life-saving treatment), medical mistrust is both ubiquitous and understandable. Medical mistrust may be critical to accounting for why we find that African American patients are less likely than white patients to acknowledge being terminally ill and to engage in advance care planning. Results suggest that like other religious people, African American patients have a strong belief in miracles, which we show can undermine the impact of end-of-life care discussions on prognostic understanding. Because African American patients often rely on religious beliefs as a basis for prognostic understanding (e.g., believing that God, not doctors, decides when one’s ‘time has come’), visits with healthcare chaplains may enhance prognostic understanding and African American patients’ sense of being seen beyond “the veil,” which W.E.B. Du Bois described as obfuscating the view of another person’s humanity. We hypothesise that healthcare chaplain visits may foster positive thoughts and emotions (e.g., feelings of being seen, respected, and supported, of hope and meaning, of peaceful acceptance of one’s terminal illness) while reducing negative ones (e.g., feelings of being discriminated against and medical mistrust). We, thus, hypothesise that the effects of healthcare chaplain visits on advance care planning among outpatients with advanced cancer are mediated by the positive and negative thoughts and emotions they conjure.
We also propose to evaluate the promise and feasibility of conducting a future randomised controlled trial (RCT) of early integration of healthcare chaplaincy into outpatient oncology care to promote and reduce racial disparities in advance care planning. Our race-specific models propose that mitigation of negative thoughts and feelings such as medical mistrust and enhancement of positive thoughts (e.g., trust, hope, and support) will mediate race-specific associations between involvement of healthcare chaplaincy in outpatient oncology services and advance care planning (see Figure 1 below for our model of African American effects of chaplains on ACP).
In conclusion, we expect that the early integration of healthcare chaplaincy into outpatient oncology clinics will address unmet spiritual care needs as well as reduce African American-white cancer patient disparities in end-stage cancer care and care outcomes. We welcome feedback on how the role of healthcare chaplaincy might address unmet spiritual care needs and reduce racial disparities in the delivery of end-stage cancer care.
Join Professor Holly Prigerson on 18th May 2022 when she gives her plenary lecture: ‘A Divine Intervention to Reduce Black-White Disparities in End-stage Cancer Care’ at the EAPC 12TH World Research Congress Online. Find out more about the congress here https://eapccongress.eu/2022/
Links and resources
- Weill Cornell Medicine Center for Research on End-of-Life Care
- @wcm_eolcare https://twitter.com/wcm_eolcare
- Want a copy of the PG-13-R? Please go to: https://endofolife.weill.cornell.edu/pg-13-R
- Try our new website: Finding Our Way: Together While Apart: https://findingourway.prolongedgrief.com
- Balboni TA, Paulk ME, Balboni MJ, Phelps AC, Loggers ET, Wright AA, Block SD, Lewis EF, Peteet JR, Prigerson HG. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol. 2010 Jan 20;28(3):445-52
- Phelps AC, Maciejewski PK, Nilsson M, Balboni TA, Wright AA, Paulk ME, Trice E, Schrag D, Peteet JR, Block SD, Prigerson HG. Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer. JAMA. 2009 Mar 18;301(11):1140-7
- Trevino KM, Zhang B, Shen MJ, Prigerson HG. Accuracy of advanced cancer patients’ life expectancy estimates: The role of race and source of life expectancy information. Cancer. 2016;122(12):1905-12
- Astrow AB, Kwok G, Sharma RK, Fromer N, Sulmasy DP. Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment. J Pain Symptom Manage. 2018 Jan;55(1):56-64.
- Ratshikana-Moloko M, Ayeni O, Tsitsi JM, Wong ML, Jacobson JS, Neugut AI, Sobekwa M, Joffe M, Mmoledi K, Blanchard CL, Mapanga W, Ruff P, Cubasch H, O’Neil DS, Balboni TA, Prigerson HG. Spiritual care, pain reduction and preferred place of death among advanced cancer patients in Soweto, South Africa. J Pain Symptom Manage. 2020 Feb 8. pii: S0885-3924(20)30071-3.
- Balboni TA, Prigerson HG, Balboni MJ, Enzinger AC, VanderWeele TJ, Maciejewski PK. A scale to assess religious beliefs in end-of-life medical care. Cancer. 2019 May 1;125(9):1527-1535
More about the authors
Holly G Prigerson, PhD, is the Irving Sherwood Wright Professor in the Department of Medicine at Weill Cornell Medicine where she co-directs the Cornell Center for Research on End-of-Life Care. Her research focuses on psychosocial influences on the quality of life and death of patients and their family caregivers. Read more and contact her either through the Center website: http://endoflife.weill.cornell.edu/
Alan B. Astrow, MD, Dr. Alan Astrow is Chief of Hematology and Medical Oncology in the Department of Medicine at New York-Presbyterian Brooklyn Methodist Hospital. An expert in the medical management of breast and ovarian cancer, Dr Astrow has a special interest in improving physician-patient communication, supporting patients through treatment, and addressing human concerns as they relate to cancer care.
Paul K. Maciejewski, PhD, is Associate Professor of Biostatistics in the Department of Radiology at Weill Cornell Medicine where he co-directs the Cornell Center for Research on End-of-Life Care. He applies his transdisciplinary training in engineering, philosophy, and statistics to studies of end-of-life care and bereavement.
WELCOME TO THE EAPC 12THWORLD RESEARCH CONGRESS ONLINE – 18 – 20 MAY 2022
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