The Meaning of Palliative Care to Older Adults

Authored by Yoojin Jung, Human Development '23

Art by Ashley Chopra, Human Biology, Health, and Society '24

The constant beeping sound of the EKG (electrocardiogram) machine turns into an alarm and a team of doctors and nurses rushes into the patient’s room. At this point, there are patients and caregivers who have had the chance to make their decisions in terms of how they will move on to the next step. Palliative care allows them to receive all the necessary information in making the best decisions for patients suffering from life-threatening illnesses. Unfortunately, older adults are one of the most vulnerable populations to life-threatening health issues. According to McPherson et al. (2013), there is a “disproportionate incidence of [advanced] cancer in this age group” [1]. As a result, there is a greater need for palliative care among the older population.

Often, palliative care is used interchangeably with end-of-life care and hospice care, and in most cases, the patients and caregivers are hesitant to agree to proceed with palliative care. In the Netflix Original Documentary “End-Game,” one of the patient’s mothers did not want the palliative care team to mention hospice care because, to her, “hospice means death” [2]. She was not alone in having such reactions. Other caregivers in this documentary felt that their loved ones were still not at the end stage of their lives and choosing to receive end-of-life care takes away the possibility of miracles occurring. According to Powell and Silveira (2020), hospice care is only available for patients with “a prognosis of less than six months” while palliative care is available for patients with “longer life expectancies if their condition is burdensome” [3]. Thus, palliative care supports more patients including older adults who are suffering from “multi-morbidity” [3] in terms of “helping people live as well as possible for as long as possible [2]. The palliative care teams are usually made up of doctors, nurses, social workers, and sometimes chaplains. Having a team of various experts from different fields allow both patients and caregivers to receive “emotional, psychological, and spiritual” support [3]. For example, the social workers are able to better communicate the personal or familial stories of the patients, which allows different members of the team to have deeper insight when making suggestions for the patients and the caregivers.

Furthermore, having such a team allows them to take care of not only the patients themselves but also their caregivers. The caregivers play a crucial role in palliative care, especially since they may be responsible for making end-of-life decisions when the patients lose the cognitive and physical ability to make their own life decisions. The caregivers of older adults tend to be more “distressed” [3] as they have a higher chance of taking on the role of caregivers for a longer period of time. Therefore, the caregivers of older patients are also in need of greater support. The COVID-19 pandemic added to the emotional burden placed on caregivers. The family caregivers were heartbroken about the fact that their loved ones with limited lifespans could not even step outside of the house or the hospital for fresh air and enjoy the lives that they have left. Moreover, the caregivers felt a sense of fear of themselves and others “infecting the patient with SARS-CoV-2” [4] Both the patients and the caregivers were faced with different means of carrying out palliative care in which there was limited access to in-person support. Navigating through this new method posed even more challenges for older adults depending on their levels of competencies with the use of technology.

Although palliative care is beneficial in most cases, the outcomes of the care differ by race and ethnicity. According to Nayfeh et al. (2022), the racial and ethnic differences may be due to “different cultural values” but also “challenges related to communication and health literacy” when the patients' and their caregivers’ first language is not English [5]. The patients and the caregivers in this situation are at a disadvantage since they will not be aware of the different options and the details regarding those options. This will pose a hindrance to making the best decision for their loved ones. This may lead to a greater sense of guilt or regret after the passing of their loved ones. In order to minimize the issues faced by racially marginalized groups, translators need to be part of the palliative care team for more effective and efficient communication among all actors of palliative care. Also, Nayfeh et al. (2022) discuss that an increase in education regarding advanced care planning reduces the racial gap among patients and their families in terms of end-of-life decision-making [5]. These changes should be implemented since the patient and their caregiver’s racial and ethnic backgrounds should not affect the quality of life at the end stage of their lives.

In short, palliative care strives to make the challenging, life-changing transition smoother for both the patients and their loved ones. However, for it to carry out its goal widely, healthcare professionals should work towards equally benefiting older patients and their caregivers from different racial and ethnic backgrounds. The first plausible step the healthcare field could take is to increase quality education on palliative care for caregivers. Doing so will allow caregivers to be equipped with “proper knowledge and training” [7]. With more frequent and higher quality palliative care education, both the caregivers and patients will have access to the knowledge and information necessary for the best possible options.

Works Cited

1. Christine J McPherson, Thomas Hadjistavropoulos, Michelle M Lobchuk, & Kelly N Kilgour. (2013). Cancer-Related Pain in Older Adults Receiving Palliative Care: Patient and Family Caregiver Perspectives on the Experience of Pain. Pain Research and Management, 18(6), 293–300. https://doi.org/10.1155/2013/439594

2. Epstein, R. & Friedman, J. (Directors). (2018). End Game [Film]. Netflix; Telling Pictures.

3. Powell, V. D., & Silveira, M. J. (2021). Palliative Care for Older Adults with Multimorbidity in the Time of COVID 19. Journal of Aging & Social Policy, 33(4/5), 500–508. https://doi.org/10.1080/08959420.2020.1851436

4. Wind, G., Vedsegaard, H. W., Marsaa, K., True, T. S., & Konradsen, H. (2022). The significance of the COVID-19 pandemic for family caregivers of non-COVID-19 patients in need of specialized palliative care at home: A qualitative study. International Journal of Qualitative Studies on Health and Well-Being, 17(1). https://doi.org/10.1080/17482631.2022.2113021

5. Nayfeh, A., Conn, L. G., Dale, C., Kratina, S., Hales, B., Das Gupta, T., Chakraborty, A., Taggar, R., & Fowler, R. (2022). The effect of end-of-life decision-making tools on patient and family-related outcomes of care among ethnocultural minorities: A systematic review. PLoS ONE, 17(8), 1–16. https://doi.org/10.1371/journal.pone.0272436

6. Lyon, M. E., Squires, L., Scott, R. K., Benator, D., Briggs, L., Greenberg, I., D, A. L. J., Cheng, Y. I., & Wang, J. (2020). Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial. AIDS and Behavior, 24(12), 3359–3375. https://doi.org/10.1007/s10461-020-02909-y

7. Effendy, C., Kurianto, E., Darmayanti, A. R. I., Noviana, U., & Nurjannah, I. (2022). Palliative Care Education to Enhance Informal Caregivers’ Skills in Caring for Patients with Cancer: A Scoping Review. Open Access Macedonian Journal of Medical Sciences, 10, 69–75. https://doi.org/10.3889/oamjms.2022.7796