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Zimmerman has effectively shown that the stigma around the word “palliative” is the main barrier to access for patients who could benefit from palliative care.1 In a related commentary, Caprio considers that renaming it “supportive care” might help.2
My experience as a family physician with a focused practice in hospice palliative care included attending over 1000 patients and their families who were referred to me during the final stages of their lives. Some died in a few days. Many were with me for a year or more. I can count on my fingers and toes the ones who came into the process with an acceptance and willingness to focus on dying, asking for palliative care by its name. However, most were looking for pain and symptom relief and a bit of practical strategy and hope so that they could keep managing their lives until overtaken by the inevitable.
The discipline of hospice palliative care has grown over the past 25 years to awaken society and the profession to the need for a comprehensive approach to the patient’s experience of their condition from beginning to end.
I believe this is almost achieved, and it is time to smudge out the separation between stages of care and stop trying to name and attribute those phases to a group of practitioners or settings of care. The profession needs to own the responsibility for knowing and managing its patients’ experiences of the effects of their conditions, with help from those with special expertise. When palliative care becomes invisible because it is completely ubiquitous in our practices and the system, our mission will have been achieved.
Thank you to all who continue to stand with their patients and others with hope and perseverance in the pursuit of life until death.