Saturday, July 3, 2010

Palliative Care or Supportive Care? Which Would You Prefer? (Research, Video 3:04)

Would a rose by any other name smell as sweet?

I have met quite a few people who don’t have a clue as to what palliative care is. Some are even in the healthcare profession. To add to the confusion, many who do know what it is refer to palliative care using various pronunciations (sound pronunciation). Then there are those healthcare organizations such as the American cancer centers that have adopted use of the name palliative care but continue to get referrals late for those needing it. Is this due to an association of the name palliative care with hospice care?  Would all these problems regarding the name palliative care be resolved by just replacing the name with a more user friendly one such as supportive care?

Obviously, the name palliative care carries several barriers that need to be explored. That’s why this research caught my interest. This study by the Anderson Cancer Center in Houston, Texas reports how the name palliative care versus the name supportive care may impact cancer patient referrals.

Can a name be a barrier to patient referrals for care? Medical oncologists and their midlevel providers (advance practice nurses and physician assistants) at a comprehensive cancer center think so. 140 out of 200 of them participated in a survey to determine the impact of the name palliative care compared with the name supportive care on patient referrals and to determine whether there was an association between demographic factors and the perceptions of the two names. What were the results?

1)    The name palliative care compared with the name supportive care was perceived more frequently by medical oncologists and midlevel providers as a barrier to referrals, decreasing hope, and causing distress in patients and families.

2)    Participants significantly preferred the name supportive care compared with palliative care. They also stated more likelihood to refer patients on active primary and advanced cancer treatments to a service named supportive care.

While these results are not surprising, where does this leave the name palliative care? Is this a matter of educating the public more to the meaning and appreciation of what palliative care can provide? Or is this a matter of phasing out usage of the term palliative care with patients and replacing it with the name supportive care? What do you think?

This video explains palliative care: “Palliative Care: What is it and who is it for?”

Frances Shani Parker, Author


  1. Frances -- Thanks very much for this terrific post, and mentioning the MD Anderson study, of which I was not aware. I share your experience, because I often ask people outside the field if they are familiar with the term palliative care and if so what do they know about. Most have not heard of it, and those who have think it applies solely to hospice care and excludes treatment or curative care. Health care professionals have told me the same thing.

    This lack of knowledge and the misperception that all palliative care is hospice care is common.

    Besides the term “supportive care”, others have been suggested such as “comfort care,” and “whole person care.” I don't think any of these have yet got it right. However, it's very important that the profession grapple with this issue. I believe the answer will lie with a major public education effort, which Diane Meier and others urge, plus coming up with short sound bites that everyone can adopt. For instance: Palliative care treats the whole person -- body, mind, and spirit. Palliative care reduces patient and family suffering. Palliative care helps patients with a serious, life-changing illness and their families make informed decisions about their treatment options that are consistent with their values. Palliative care helps patients live as well as they can as long as they can.

    We in the palliative care field are up against a huge lack of awareness of the benefits of palliative care made worse by the myth and lie of the term "death panels." I am convinced that when Americans know what palliative care truly is, they will ask for it and they will tell their family and friends about it.

    Thank you for stimulating the conversation.

    Jim Siegel
    Director of Marketing & Communications
    HealthCare Chaplaincy

  2. Frances -- I add one more sound bite courtesy CAPC's Diane Meier: "Palliative care is about matching treatment to patient goals.

    Jim Siegel
    Director of Marketing & Communications
    HealthCare Chaplaincy

  3. Thank you for contributing to this discussion, Jim. You are correct about the great need for public education on this topic.

  4. I support keeping the name palliative care. The English language is constantly evolving with new words having varying degrees of difficulty in pronunciation, spelling, and meaning. As misunderstood as the word hospice still is, a sizeable and growing group of people who had no idea what hospice meant only a few years ago use it now in everyday conversations. How long ago was it when many of us didn’t understand words such as emoticon, modem, and even browser?

    I see palliative care as another name trying to worm its way into the English language. It’s having a harder time partially because of its association with death, but it’s way too soon to give up on using it. The key to keeping the name palliative care around, of course, is focused education of healthcare workers and the public. As we continue to support terminal illness with dignity and emphasize healthcare terms such as hospice and palliative care, we will empower others to embrace these terms as well.

    Finally, the public has a way of shortening words and phrases on its own. For example, in a very short time, our downtown Renaissance Center in Detroit became known as the RenCen. There is also text messaging language (OMG, IMHO, LOL, etc.) that has wandered into general conversation. I envision palliative care evolving into PAL care. Now, that would really be sweet!

  5. Frances -- I agree, let's not try to conjure up a new term to replace the official medical subspecialty of palliative care. Your point about the RenCen abbreviation and the text messaging acronyms reminds me how we all use the term EKG today. I love your dream of PAL care!

  6. I voice my agreement in keeping the name. Our hospital's palliative care team started 10 years ago with the name Advanced Illness Assessment Team, then we changed to Symptom Care Team for several years. We called ourselves the Palliative Care Team for the last 2 years. All the while, we have been doing the same things...managing the discomfort of chronic illness, assisting patients and families in determining goals of care, providing spiritual support and emotional support with our interdiscplinary team.

    Just like other programs, we are constantly educating and re-educating our colleauges about our service. Recently, an ICU clinician suggested in a meeting that we should change our name because palliative care "scares people". She has been a part of this hospital's administrative team since the beginning of our program and is certainly aware that we have gone by other names. Currently, our service is busier than ever.

    Some people are not going embrace palliative care no matter what. We could call ourselves the Mickey Mouse Club and, eventually, that name would become associated with end of life. That is what scares people.

    We need to stick to the name. We need to keep educating our colleagues, our hospitals, and our communities.

    Thanks for this thought provoking post.

    Julie Carpenter, NP
    Palliative Care Clinical Coordinator
    Maryville, Tennessee

  7. Thanks for your detailed response with everyday examples. I agree that education is the answer.