Submitted by: Nancy Joyner, MS, CNS-BC, APRN, ACHPN®
November is Hospice and Palliative Care Month. This year’s theme is “Meeting You Where You Are.” Patients and healthcare professionals don’t understand the distinction between these two medical terms. Hospice care focuses on care near the end of life. However, all of hospice is palliative care but not all palliative care is hospice.
The Latin root for patient is “one who suffers” and the Latin root for palliative is “to cloak, cover, protect, reduce the violence of.” Therefore, palliative care is a basic human right for patients with serious illness and is needed everywhere.
Palliative care is specialized medical care for people living with serious illness. This care is focused on providing relief from the symptoms and stress of the illness and the medical interventions. The goal is to improve the quality of life for both the patient and the family. Palliative care is based on need, not on prognosis, age, setting, or stage of disease. This care involves skilled, intensive communication, ability to treat complex physical and emotional symptoms, as well as spiritual care.
Palliative care can help patients live longer while addressing the patient’s preferences and wishes for treatment and care. Serious illness is best defined as a “health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains the caregiver.”
Palliative awareness, education and interventions have been my passion for over 20 years. The nature of serious illness has been driven by disease in the health industry which has created more emphasis on “doing everything”. Aggressive treatment does not necessarily conform to patient-centered care or quality of life. Often, by default, fear of dying and death may cause misunderstanding by patients and families. Palliative care is not part of a death panel. DNR does not mean do not treat. Being kept comfortable is never futile care.
Medical discussions that provide true understanding to patients do not occur easily or naturally. These Serious Illness conversations take time and energy and often more than one discussion. Trust, dignity, and respect will lead to genuine and thoughtful conversations. When providers and specialists say, “there is nothing more I can do”, they are forgetting the three little words, “for the disease”. There is always more we can do. Palliative care “done right” involves four “Cs”: Comfort, Communication, Choices and Control (patient-centered care).
Many of the patients I work with struggle with serious illness. Start with simple questions or statements —how are things going? tell me more. help me understand.— which are fundamental expressions of human conversations.
Introduce the Go Wish card game or provide them with the booklet, Hard Choices for Loving People. These are examples I have in my toolkit for quality palliative care.
For more information, please feel free to contact me at njoyner@nancyjoyner.com, nancyjoyner.com, or my LinkedIn site.
* Originally featured in the Q Insider | Great Plains Quality Innovation Network – November 08, 2021 – Vol 2, Issue 11