Perceptions of Palliative Care

Do you know what palliative care is? According to the Center to Advance Palliative Care (CAPC), “Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. 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. Palliative care is based on the needs of the patient, not on the patient’s prognosis. This care is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”¹

Palliative care is not hospice care

However, many people, including physicians, confuse palliative care with hospice care and think it is something that a patient with lung cancer only can access when all treatments have stopped working and they near end-of-life. This is not true at all.

Palliative care, as described in the above definition, is appropriate for patients with lung cancer in all phases of treatment or post-treatment. It is a critical part of living well with lung cancer and can greatly improve quality of life. Unfortunately, many patients are not offered palliative care as part of their treatment and often do not know that they can ask for this supportive care.

What does the data say?

I recently presented a poster on behalf of the EGFR Resisters and LUNGevity Foundation at IASLC’s World Conference on Lung Cancer 2020 entitled “Perception of Palliative Care and Prognostic Awareness of Lung Cancer Treatment in an Oncogene-Driven Lung Cancer Community.” This poster was based on responses from our patient-founded and patient-driven Project PRIORITY study, developed as a partnership between the EGFR Resisters and LUNGevity, to understand the lived experience of EGFR positive patients with lung cancer.

We asked respondents about their perceptions of symptom management, palliative care, and supportive care both before and after reading a definition of these phrases. The definition used for palliative care was the one from CAPC quoted above. Post definition, nearly 20% of our respondents showed an increase in how favorably they viewed palliative care, significantly higher than favorability improvements for symptom management and supportive care. This underlines the misconceptions that exist about what palliative care means and the need for increased education about palliative care services. The fact that respondents had different perceptions of symptom management, palliative care, and supportive care shows how critically important it is to use consistent language when using these phrases for discussions with patients and caregivers.

While most respondents were aware of palliative care, they reported that they do not use it for themselves. Only 35% of survey participants indicated current usage of palliative care. Interestingly, in all subsets of respondents, people were more likely to recommend the use of palliative care as important for their loved ones, as opposed to themselves.

Communication matters

It is unfortunate that there currently is limited use of palliative care in the EGFR positive lung cancer community despite awareness of its benefits. Communication matters! We critically need more patient-centered communication and assessment of supportive care needs in the lung cancer community.

You can view my entire poster presentation. I also discuss the awareness of prognosis reported by survey respondents in the EGFR community in this presentation.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.