Getting the language of palliative care straight

Lyle Fettig has an interesting post on what adjective is best used to describe the patient needing palliative care: Serious v. Chronic v. Life-limiting v. Advanced v. Terminal? He then discusses a post by a patient with Rheumatoid Arthritis seeking a palliative care consult and concludes that patients with a serious illnesses are those that can plausibly benefit from palliative care, with the key being making it clear to patients that palliative care is not only relevant in the last days of life.

Christian Sinclair agrees that serious is the best word to describe those illnesses that are relevantly addressed by palliative care, and reports on the results of a survey of the public’s knowledge of palliative care. Bottom line:

People do not know what palliative care is.  78 % of people said they were ‘not at all knowledgeable or don’t know’ when asked about palliative care. Frustrating I am sure to those of you who beat the drum everyday but at least it is not being wholly defined and understood without us (yet).

This lack of knowledge combined with our culture’s inability to discuss and face limits in what medicine can do is what provides the space for the politics of rationing and death panels to be so potent.

 

About Don Taylor
Professor of Public Policy at Duke University (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute). I am one of the founding faculty of the Margolis Center for Health Policy, and currently serve as Chair of Duke's University Priorities Committee (UPC). My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

2 Responses to Getting the language of palliative care straight

  1. One suggestion I’ve heard is to replace the word “palliative” with “comfort”.
    The idea is that the term Palliative Care goes right over people’s head, whereas Comfort Care is something they can identify with. Comfort Care is for those with a serious illness, and is designed to keep them as comfortable as possible while they recover from their illness, or at the end of their life.
    You’re right about people not wanting to talk about death.
    I’ve spent the last year helping create a non-profit website (www.deathwise.org) to encourage people to get educated and prepared for end-of-life issues.

    • Don Taylor says:

      @Rolf Erickson
      There is a lot of resistance among many palliative care docs to change the name given how hard they have worked to build name of palliative care. However, the bottom line is that communication has to improve. I will check out the website.

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