Providing the highest quality, patient-centered care for people with serious, advanced or terminal illness must become a core competency of every discipline in our care settings. The published data support conclusions that early, high quality palliative care reduces symptom burden, supports advance care planning, eases fears and worries, and allows patients to choose medical treatment that is consistent with their values and preferences. In essence, palliative care improves quality of life in advanced illness.
Yet there are many barriers to providing palliative care, in every setting. In a recent project to improve and align messages to the public about advance care planning (ACP), palliative care (PC) and hospice, Back, Grant and McCabe (2021) reported that “… misunderstanding of ACP, PC, and hospice is wide ranging and deep.” This finding is consistent with many previous studies, and at the same time that it engenders disappointment (haven’t we made more progress??) it also points to the clear opportunity and further work that needs to be done.
In its broadest sense, palliative care matches medical and other treatment to a patient’s goals. Often confused with hospice care, palliative care is comprehensive, person-centered care aimed at improving symptoms and quality of life for persons with advanced illness and their family members. The Center to Advance Palliative Care (CAPC) includes in its definition of palliative care that, “Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support.” I would go one step further. To me, “extra” sounds optional – I believe that palliative care is an essential layer of support. Hospice care, in contrast, is an application of palliative care at end of life, typically for persons whose life expectancy is judged to be 6 months or less.
In addition to confusion about palliative and hospice care, lack of skills in conducting goals of care conversations is also cited as a barrier to palliative care. Why should we talk about palliative care with persons who have advanced illness? Because communication about patient goals and preferences for care and patient/ family understanding of illness is the single common pathway to better care. Engaging in these types of conversations is a skill that can be taught and learned – in other words, even really good clinicians need to learn this. I have often heard that a very sick patient was deemed “not ready to talk about palliative care.” I question this conclusion, as talking about palliative care is really a conversation about the patient’s goals and preferences. It is a starting place for continued values clarification and decision making. I can’t remember any patient I ever cared for as an RN or APRN who refused to engage in a conversation about their understanding of illness, options and goals. Instead, I think that when we say the patient is not ready, what we might really mean is that we clinicians are not ready to have a difficult conversation. In every care setting we need clinicians who are prepared for and comfortable with engaging in conversations about goals of care.
Anthony L. Back, Marian S. Grant, and Patrick J. McCabe. Public Messaging for Serious Illness Care in the Age of Coronavirus Disease: Cutting through Misconceptions, Mixed Feelings, and Distrust. Journal of Palliative Medicine. Jun 2021.816-819.http://doi.org/10.1089/jpm.2020.0719
Center to Advance Palliative Care (CAPC). About palliative care. Available at: https://www.capc.org/about/palliative-care/