Let’s be honest: the words “palliative care” can evoke fear for patients and family members.
I fully understand the definition of palliative care. After all, I have worked as a non-clinician in the health care system and palliative care education for the last 6 years. Yet when the time came that a close family member was labelled “palliative,” the fear and dread still came.
I wanted to write this blog, not to explore debates – on the use of palliative care, or changing the name, or any of the other questions currently being discussed in this field – but to share my and my family’s experience with what the true meaning of a palliative care approach is.
The World Health Organization defines palliative care as:
“…an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness….”
I never fully appreciated this statement before being a family member of someone who has received, in the true sense, a palliative approach to their care. A palliative approach to care is all-encompassing and depends on physicians, nurses, allied health and volunteers. A palliative approach to care relies on person-centered care and the philosophy that, no matter how ill a person is or what stage of their journey they are in, they are always a person first. A palliative approach to care is a “philosophy to care.”
In my experience I saw this reflected in the nurses, physicians and even the housekeeping staff on a palliative care unit. Everyone continually announced when they entered the room and explained to my Nana what they were doing, even in the last days and hours when there was no response. As someone who watched the decline of a very strong (and strongly opinionated) woman, this meant so much as it reinforced that although she could not voice her wishes, she was still being considered and respected. This approach to care was also reflected in the care my family received. Volunteers came every day to offer food and any kind of support they could while being respectful of the difficult journey that we, as a family, were on.
The health care providers on this unit came into the room fully aware of the energy they brought and were continually dedicated to ensuring that the atmosphere was peaceful, respectful, and that the needs and wishes of the patient were fully met right to the end of the journey. One never truly thinks about the energy they bring into a room; I, myself, am always multi-tasking and thinking of the next item on my to-do list. But these nurses, when they entered the room, did so calmly and focused. They took my grandmother’s hand, called her by name, and even in the final days when she could not respond she knew that they were there to care for her.
The palliative approach to care even continued after death, as health care providers shared in the grief of our family. They continued to care for her with respect and dignity even after she died. When she died my mother and uncle were with her and her nurse came in and kissed her forehead and said his own goodbye. The nurses were invested in my grandmother, not as a name on their roster but as a person with a unique attitude, family life experience, and (if we’re being perfectly honest) a certain amount of sass. This person, who meant so many things to so many people, was never just a “patient” in the system – she was treated as a person who will be forever missed, and it provided me and my family great comfort.
When a person is labelled “palliative,” many equate that to only end-of-life. But in my experience, true palliative care is care focused solely on the person, their needs, and ensuring that dignity is conserved through each stage of the journey. Our experience shows that this type of care can be provided by every single member of the team, both clinical and non-clinical. It is, in the truest and most meaningful sense, a “philosophy to care.”
Written by: Nathalie Gravelle-Ray