My Capstone Project: Hospice Care’s Bad Rap

I am finishing up an Academic Online Research project and had to write a blog post in response to a research question I developed.  So … here is my attempt at a psuedo-research blog post about a subject near to my heart:  Hospice Care. 

Ed Note:  There are no links to the websites, blogs or articles because I just finished uploading this assignment and have two more papers to write tonight and I’m just too darn lazy.  You found this on the internet … you can probably find those things too.  Kthkxbai.

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I found a post on the blog The Doctor Weighs In, that talks about how hospice involvement can extend life and save money for the patient. While the author speaks about the amount of money saved by involving hospice into patient care, one fact from the post that particularly interested me, taken from the New England Journal of Medicine, talked about how terminally ill cancer patients who “chose palliative care and hospice lived three months longer and had a better quality of life, with fewer side effects, than those who opted for aggressive treatment.” The author also notes that in spite of this fact, “fewer than 40% of U.S. cancer patients who eventually died from the disease used hospice or palliative care services.” Most of those who did were referred to hospice about a week before their death. The author goes on to talk about issues with expectations about what medicine can do for terminally ill patients and that surveys have shown that both physicians and patients shy away from end-of-life care conversations.

Working as a nursing assistant in an oncology clinic, I take care of patients all day who are facing the end of their lives. I see first hand how difficult it can be for our physicians to have the discussion about involving palliative care and hospice into a care plan. It seems to me that most patients and their families have the perception that mention of the word Hospice equates to a death sentence that looms in the very near future. This post had me asking myself, what can be done, if anything, to turn the perception of hospice and palliative care around, so that the discussion becomes easier for the physician, patient, and family?

While researching this question I found sources that in some way pointed to a lack of clarification. From not having a clear idea about when hospice should be involved to no clear definition or language about what hospice care is, what palliative care is, and what these types of care mean for patients.

Starting with the when, the National Hospice & Palliative Care Organization’s Caring and Connections web page has a basic FAQ for patients and families. The Caring Connections site is the patient and consumer education site for the NHPCO. When asked when is the right time to talk about hospice, the NHPCO says that “Now is the best time to learn more about hospice care and ask questions about what to expect.” It suggests that discussing this early allows for a possibly less emotional conversation as well as the involvement and input from family members and loved ones. Similarly, an article in the July 2008 issue of the Journal of Advanced Nursing titled: Letting go before death: a concept analysis, also discusses an early approach to these kinds of discussions, before health declines to the point where the talk is too difficult either physically, emotionally or both.

When you move to the confusion over language and definition, things can get even more dicey. Going back to the Journal of Advanced Nursing article, the main concept they discuss is the concept of “letting go” and the various ways that phrase can be interpreted. From letting go and accepting that death is imminent, which could possibly bring peace, to letting go of hope of a cure, which can bring sadness, depression and a loss of acceptance of the situation. Even at the most academic level there seems to be confusion. In the July 2011 issue of the International Journal of Critical Illness & Injury Science article titled: An overview of end-of-life issues in the intensive care unit, the researchers found that while “Nearly all medical schools now teach about end-of-life issues because it is required by the Liaison Committee on Medical Education …” , there remains … “even after a decade of the effort, students report their schools’ curricular attention to death and dying, pain management, and palliative care as inadequate.” The study goes on to note that “If there is a deficient effort at the medical school level, then the same shortcomings may be applied to residents.”

With all of this confusion, there is no wonder that there is such a gap between the public, and professional, perception of hospice care and what early involvement of this type of care can do to actually benefit and prolong good quality living in terminally-ill patients. The Journal of Advanced Nursing article states that “Through a better understandingof this phenomenon, clinicians can support families with loved ones near the end of life by recognition of and response to its attributes.” The article goes on to conclude that this area should be the focus of further research, and I wholeheartedly agree. Studies have shown the benefits of involving hospice or even having a conversation about hospice early in the diagnosis of a terminal illness. Further research and public education can only help to turn the false perception around and will ultimately benefit all patients and families in the future.