Palliative care: Our language matters
Palliative care is specialized medical care for people with serious illnesses. 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. Here, Daniel Johnson discusses the relevant issues and provides tips for better coverage of palliative care.
(Centers to Advance Palliative Care, 2011 Public Opinion Research on Palliative Care)
Much press in 2010: More than “Comfort Care"
In a randomized trial of 151 patients with lung cancer, patients were selected to receive usual care, or usual care plus early (integrated) palliative care. Those with early palliative care had:
- Higher quality of life scores (p=0.03)
- Fewer depressive symptoms (16% vs. 38%, P=0.01)
- Less “aggressive” EOL care (33% vs. 54%, P = 0.05)
- Longer survival (11.6 months vs. 8.9 months, P = 0.02).
(Temel JS et al. NEJM, 2010)
Roadblocks to Palliative Care
Myths and misconceptions:
- “She’s not that sick!”
- “They’re not ready yet...”
- “Death panels.”
- “That’s just hospice.”
- “We don’t have enough staff.”
- “I’m not sure what to say.”
- “I need more time.”
- “This is all about saving money!”
- Referral challenges
- Limited clinician knowledge and skills
- Limited access to specialty support in palliative care
What do consumers believe about palliative care?
It is important that patients with serious illness and their families be educated about palliative care options available to them together with curative treatment .
Palliative care is appropriate at any age and at any stage in a serious illness,and can be provided together with curative treatment.
Discussions about palliative care treatment options with a doctor should be fullly covered by health insurance.
Discussions about palliative care treatment options with a doctor should be fullly covered by Medicare .
(CAPC, 2011 Public Opinion Research)
Advance Care Planning (ACP)
ACP has received much attention in the last five years. It is not synonymous with palliative support, but is one aspect of it. The recommended changes in reimbursement for ACP led to "death panel" rhetoric, but there has been a recent resurgence of efforts to improve care planning. Nearly eight in 10 persons say that if seriously ill, they would want to speak with their doctor about end-of-life care, but fewer than one in 10 report having had a conversation, including just 13% of those 65 or older.
(California HealthCare Foundation survey, Final Chapter: Californians' Attitudes and Experiences with Death and Dying, 2012)
A Few Writing Tips
Avoid war metaphors and euphemistic language:
- “giving up”
- “starving to death”
- “He lost his battle with cancer”
Avoid destination language:
- “Is she ready for palliative care?”
Refer to hospice as a support service instead of a place, and don't use passive language:
- Not Good: “Is he in hospice?"
- Better: “Is John receiving hospice support?”
Remember that the medical cost of palliative care is a sensitive topic:
- Avoid polarizing phrases like "all about saving money" or "death panels."
- Instead, communicate the "win-win-win" triple aim of palliative care by emphasizing how everyone benefits.
Share varied perspectives. Include those of the patient, family, and the physician or clinician, as well as societal views and any other available viewpoints relevant to the story.
Remember that the goal is to stimulate authentic dialogue!
Example: Sharing Varied Views on a Policy Recommendation
Emerging (but rarely discussed) stories:
- The devaluing of person-centered care by not reimbursing goals-of-care conversations
- Premature/ unwarranted hospice discharge
- Why debating “physician-assisted death” is the wrong conversation for America
- The evolution of Medicare Hospice Benefit
- The end of life is about far more than just loss; it is an incredibly important time of opportunity
A Few Resources
Advance Care Planning
- Respecting Choices, located in LaCrosse, Wisc. and featured on the recent NPR podcast “The Town that Loves Death”
- The Conversation Project, a campaign encouraging people to make end-of-life plans
- Consider the Conversation, a film on end-of-life care
- Advance care planning videos from ACP Decisions, a nonprofit with the goal of empowering patients and families
Daniel Johnson, M.D., F.A.A.H.P.M., is the National Physician Lead for Palliative Care, Care Management Institute, Kaiser Permanente; Director Emeritus at Life Quality Institute; and Faculty Associate at University of Colorado Center for Bioethics and Humanities. You can email him at email@example.com.