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Lenard W. Kaye is the director of the University of Maine Center on Aging and a professor in the University of Maine School of Social Work.
In order to better understand why hospice and end-of-life care services tend to be underutilized, the Collaborative for Hospice and End of Life Care commissioned the University of Maine Center on Aging to conduct a survey of community residents and health care professionals in Greater Bangor. Carried out in the Fall of 2019, that research sheds light on the extent to which the general public and health care provider attitudes and knowledge about hospice and end-of-life care might help explain why we are not taking full advantage of these critical services and supports during times of need, and especially now, during a pandemic.
The surveys were distributed to community residents 18 years and older who lived within a 25-mile radius of Bangor, as well as hospice and health care professionals who work in the area. Two hundred and thirteen adults participated in either an online or a paper survey. Twenty-two health care professionals also took part in the research.
Our findings suggest that a significant proportion of the adult public is not well informed concerning the purpose and availability of hospice and end-of-life care services in and around Bangor. Although a wide range of these kinds of services were rated as highly important by community residents, survey participants were generally unaware if such services actually existed in the region.
Overall, one in every two residents surveyed did not know if particular kinds of end-of-life care services were locally available (ranging from a low of 27 percent that were unsure whether grief support services were available to 67 percent unaware of the presence of a community hospice house). The participating hospice and health professionals agreed, maintaining that the public did not have a clear understanding of the intent of hospice and end-of-life care services. Interestingly, community residents felt that the area’s health care professionals were, themselves, relatively uninformed as well when it came to knowing about such services and were also not likely to refer their patients to hospice and end-of-life when such supports might have been needed.
Based on survey findings and other research, it seems clear that significant barriers to the timely utilization of hospice and end-of-life care services continue to exist. Those barriers include: stigma and fear surrounding issues of death and dying; a lack of readily available information as to the purpose of these services; financial barriers believed to exist in terms of the affordability of such services; and scarcity in terms of the presence of certain kinds of end-of-life care services, especially in rural communities.
For local community residents and health care professionals, the top-ranking suggestions for increasing the use of existing hospice and end-of-life care services were: having earlier discussions between health care providers and their patients concerning the need for such services; and offering increased public and professional education around death and dying and how these kinds of services can help terminally ill individuals live with less pain and suffering and enjoy greater physical, emotional, and spiritual quality of life.
The continued devastating negative impacts of COVID-19 only serve to further emphasize how important increased public and professional awareness and timely utilization of hospice and end-of-life services and supports are for the most vulnerable of our fellow Mainers and their families.
The Collaborative for Hospice and End of Life Care launched in 2019 to increase understanding of and access to high quality end-of-life care in Greater Bangor. The collaborative is committed to improving both community and provider awareness of end-of-life care options, reducing stigma, increasing access and utilization, and maximizing quality of care provided. Members of the collaborative are: Beacon Hospice/Amedisys, Community Health and Counseling Services New Hope Hospice, Kindred Hospice, Maine Hospice Council, Northern Light Home Care and Hospice, Penobscot Community Health Care, St. Joseph Healthcare, and University of Maine Center on Aging.