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Words matter when clinicians discuss palliative care with patients
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Last month’s Supportive & Palliative Care column by Biren Saraiya, MD, highlighted a recent ASCO position paper that recommended palliative care be considered early in the course of illness for patients with metastatic cancer and/or high symptom burden.
What does this mean for patients and their families? How will they respond, and how do oncologists introduce these new recommendations?
Patients often define palliative care as hospice. Although that is incorrect, those perceptions remain, so how do we redefine palliative care in this new era?
Public opinion polling has revealed a key message: Words matter.
In 2011, the Center to Advance Palliative Care — with the support of the American Cancer Society and the American Cancer Society Cancer Action Network — commissioned research by a Public Opinion Strategies, a national polling firm, to study the public’s attitudes and perceptions about palliative care.
The poll of 800 adults aged 25 years or older revealed that most of the public does not feel knowledgeable about palliative care.
In some ways, this is good news, as it allows us to help define it for them. A good portion of the polling dealt with language perceptions and preferences. For example, most of those polled indicated they prefer the term “serious illness” rather than “advanced illness,” believing “advanced illness” connotes terminality.
Stephanie Harman
The findings also can help physicians determine what to say to patients and their families to help them better understand what palliative care is — and, just as important, what it is not.
Based on their qualitative data, the researchers crafted a revised definition of palliative care that had a significant positive effect on members of the public. The researchers suggested clinicians use this definition when describing palliative care:
“Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing patients with relief from the symptoms, pain and stress of a serious illness — whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”
Once informed of this definition, 95% of those polled said patients who have a serious illness should be educated about palliative care options, as well as curative treatment.
Too often, palliative care has been introduced as end-of-life care. Because that carries so many negative and misleading connotations, patients and families don’t want anything to do with it.
The conversation in which we introduce palliative care serves as a gatekeeping function, and the words we use are critical. Sometimes, clinicians describe palliative care too cryptically or too vaguely to avoid reminding patients and families that they are dealing with a serious and potentially fatal illness.
This new definition has changed my practice, specifically related to how I introduce our services and what I recommend to clinicians who are describing palliative care to their patients.
I have found the above definition to be well-received by patients and families. While speaking with them, I use this definition and elaborate further, incorporating their specific situation and explaining how we collaborate with their primary oncologist.
Again, words matter. A new definition can mean the difference between a patient accepting a visit with a palliative care clinician or missing the opportunity for more support.
References:
- Center to Advance Palliative Care. 2011 public opinion research on palliative care. Available at: capc.org/tools-for-palliative-care-programs/marketing/public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf. Accessed April 20, 2012.
- Smith TJ. J Clin Oncol. 2012;30:880-887.
For more information:
- Stephanie M. Harman, MD, FACP, is a palliative care physician at Stanford University Medical Center and director of its inpatient palliative care service. Dr. Harman reports no relevant financial disclosures.