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Palliative care needs a new name

An uncomfortable name. A new study uncovers a surprising reason why patients with advanced cancer may not be getting the comfort care they need at the end of life.

Last week, Federal Justice Minister Jody Wilson-Raybould tabled legislation on doctor-assisted death. It lays out strict parameters about who can receive help in dying. While some critics complain that the legislation doesn't go far enough, others say that a forgotten issue in the debate is access to palliative care. But a new study concludes that palliative care may be just as problematic to some patients.. as doctor-assisted death is to others.

It starts with the perceptions of patients who receive palliative care.  The study by researchers at Princess Margaret Hospital in Toronto involved interviews with 48 patients and 23 caregivers.  The patients all suffered from cancer of different kinds  including lung, stomach, colon, breast, and others; all of them had an estimated survival time of between six and 24 months. All received standard cancer treatment; roughly half the patients got an early referral for palliative care as well.  In interviews, the patients in both groups said their initial perceptions of palliative care were of death, hopelessness, dependency and end-of-life comfort for hospital patients. 

The WHO defines palliative care as an approach that improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual. It's an approach that affirms life and regards dying as a normal process; intends neither to hasten or postpone death, offers a support system to help patients live as actively as possible until death, and is applicable early in the course of illness, in conjunction with other therapies.

The direct and early experience of those who received palliative care to view it as treatment that is available not just at the end of life but for a much longer period of time. They came to believe that palliative care improves a patient's quality of living - not just to manage their symptoms when they're dying. 

So far, so good.  Still, the patients who received it at an earlier stage in their illness also told researchers that the concept of palliative care needed to be re-framed and explained better by health care professionals. They told the researchers that palliative care would be less stigmatizing and received better if it went by a different name.

The attitudes of patients are crucial because the negative stigma leads patients and their family members to fear and even avoid the professionals who offer palliative care.  That stigma even makes some patients reject palliative care outright. If you think that sort of care is only for people who are dying, then rejecting it means you don't think your dying, or you're saving comfort measures so you'll have them if and when you need them at the end of life.  The problem with that logic is that you're depriving yourself of treatments that improve your quality of life while you're vigorous enough to participate more fully in life and enjoy it.  Studies show that early access to palliative care increases satisfaction with life, and helps alleviate depression.

The patients involved in the study had some good ideas on how to re-brand palliative care.  One suggestion to rename it 'supportive care' met with approval from most of them.  A study published several years ago in the journal Cancer found 80% of health professionals preferred the term supportive care; only 19% preferred palliative care.  At least one study of cancer specialists concluded that changing the name to supportive care resulted in more patient referrals  suggesting that the name change had a positive effect.

I have to say I find the phrase 'supportive care' a bit lame.  I wonder what advertising executives might call it.

\Whatever term you like, the patients said it's important that patients receive it from the initial diagnosis. They also think that the people who provide it be introduced as part of the team from the outset.

Palliative or supportive care is critical to our deliberations on doctor-assisted death.Some proponents of palliative or supportive care argue that improved access would mean a decrease in support for doctor-assisted death.  That has led some to believe that the government should focus on improving palliative care instead of passing legislation on assisted death.  Proponents of doctor-assisted death argue that countries with supportive legislation have seen an increase in palliative care services as a direct result.  Whatever one thinks about doctor-assisted death, people on both sides agree that palliative care services in Canada are inadequate and must be increased. 

The study in CMAJ shows that improved services will only make an impact when palliative care becomes widely accepted.