Aggressiveness of care at end of life (EOL) can lead to worse patient outcomes and more difficulty for their caregivers in dealing with their grief after death.1
This may include hospital stays, new chemotherapies in last 30 days of life, and intensive care unit admissions. African Americans receive more aggressive care at EOL than other groups and, as a result, have prolonged suffering and a worse quality of life at EOL compared with Caucasians. 2-4
National studies examining racial differences in EOL planning reported that African Americans were half as likely as Caucasians to have an advance directive.
Oncology nurses are instrumental in facilitating advance directive planning.7,8
The Oncology Nursing Society recognizes that oncology nurses are key to advocating for patient EOL care.13
One way to facilitate advocacy is to continue to understand the factors that lead to treatment decisions so that nurses can continue to gain in their knowledge and comfort in assisting patients and caregivers with discussing EOL care, goals, and advance directives. 5-7
FACTORS INFLUENCING TREATMENT DECISIONS AT EOL
Preliminary data from an ongoing research study (NRO14856) focused on factors influencing treatment decisions at EOL and goals of care at EOL for adult patients with stage IV gastrointestinal and lung cancer.9 All patients were interviewed at baseline and every 3 months for the 15-month study period. They were asked questions using reliable tools (eg, an 8-item scale and questionnaire) that focused on their goals of care and importance of factors that influenced their treatment decisions.10-12
The average age was 63 years old. Among the group, 28% were African American and 50% were women.
African Americans identified 3 factors that influenced their treatment decisions as more important to them than they were to Caucasians: (1) a wish to live as long as possible, (2) the role that spiritual/religious beliefs play in influencing their treatment decisions, and (3) their desire to be free of pain.Regarding the most important goals of care—length of life versus comfort care—there was no difference between African American and Caucasian patients. The study is ongoing, but these preliminary results on 225 patients provide some insights related to implications for practice.
IMPLICATIONS FOR PRACTICE
Our finding that there were some differences by ethnicity regarding the importance of some factors influencing treatment decisions at EOL reinforces the need for EOL communication tailored to race and ethnicity. Understanding the key role that religious/spiritual beliefs have on treatment decisions in the African American community is important when facilitating advance directive discussions, and including the patient’s family in the discussion has been identified by experts as the key to the success of such discussions.6,7
Other research has shown that when people do not have advance directives, they are more vulnerable to having decisions made that do not follow their wishes and do not allow for a dignified death. Sharing such information is important if we are to ensure that all patients will make the most informed decisions regarding plans at EOL.
Finally, acknowledging the patient’s wish to live as long as possible is important. Although it is vital to respect individuals’ rights to be hopeful and wish for miracles, healthcare professionals also need to discuss the importance of planning, in case the outcome is not as hoped for. This can often be seen as a difficult task. However, it is crucial for the healthcare community to continue to strive to recognize the need for tailored discussions for advance directives and EOL planning, to include the family whenever possible, and to recognize the patient and family’s needs to continue to hope for the most positive outcomes.
1. Wright, A., Baohui, Z., Ray, A., Mack, J. Trice, E., Balboni, T., Mitchell, S., … Prigerson, H. (2008). Associations between EOL discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 300(14):1665-1673. doi:10.1001/jama.300.14.1665.
2. Sanders, J., Robinson, M., Block, S. (2016). Factors impacting advance care planning among African Americans: Results of a systematic integrated review. Journal of Palliative Medicine, 19(2):202-27. doi: 10.1089/jpm.2015.0325.
3. Zhang, A. Y., Zyzanski, S. J., & Siminoff, L. A. (2012). Ethnic differences in the caregiver’s attitudes and preferences about the treatment and care of advanced lung cancer patients. Psycho-Oncology, 21(11), 1250-1253. doi:10.1002/pon.2031.
4. Earle, C., Landrum, M., Souza, J., Neville, B., Weeks, J., Ayanian, J. (2008). Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? Journal of Clinical Oncology, 2008(26),3860–3866.
5. Moss, K. O., & Williams, I. C. (2014). EOL preferences in Afro-Caribbean older adults: A systematic literature review. Omega, 69(3), 271-282. doi:10.2190/OM.69.3.
6. Ramnarace, C. (2011). Fewer African americans plan for end-of-life care. AARP Bulletin, January 7, 2011.
7. Rao, JK, Anderson, LA, Lin, FC, Laux, JP. (2014). Completion of advance directives among US consumers. Am J Prev Med; 46(1):65-70.
8. Ryan, D. & Jezewski, M. (2012). Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncology Nursing Forum, 37(6), E400-10 doi: 10.1188/10.ONF.E400-E410.
9. Lipson, A., & Douglas, S. (2015). Factors influencing care decisions for patients with advanced cancer. Oncology Nursing News,9(2), 53.
10. Winter, L., (2013). Patient values and preferences for EOL treatments: are values better predictors than a living will? Journal of Palliative Medicine, 16(4), 362-368. doi: 10.1089/jpm.2012.0303.
11. Neal, J., Weinfurt, K., Burnett, C., Balshem, A., Benson, A., Castel, L., … Schulman, K. Perceptions of Patients and Physicians Regarding Phase I Cancer Clinical Trials: Implications for Physician-Patient Communication. (2003) Journal of Clinical Oncology. 21(13) 2589-2596. doi: 10.1200/JCO.2003.10.072 12. Plante, T. G. (2010). The Santa Clara strength of religious faith Questionnaire: Assessing faith engagement in a brief and nondenominational manner. Religions, 1, 3–8.
13. National Consensus Project. Clinical practice guidelines for quality palliative care, 3rd ed. 2013. http://nationalconsensusproject.org/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf.