How did it happen that palliative care lost the dignity debate? Palliative care is a discipline dedicated to improving quality of life by preventing and alleviating suffering. There can be few higher callings in medicine.
Yet those who advocate “dignity in dying” have successfully claimed that the idea of dignity lies not in palliative care but in assisted dying for the terminally ill. A large majority of the public seems to agree.
Those in favour of assisted dying have portrayed palliative care as somehow antithetical to patient autonomy. According to this view, palliative care is conservative and paternalistic.
Last week, the Lancet Commission on Alleviating the Access Abyss in Palliative Care and Pain Relief launched its findings and recommendations at the University of Miami. Led by Felicia Knaul, the Commission described how 61 million people are affected by severe health-related suffering,
Commissioners called on the entire health community, indeed the whole of society, to take pain and suffering more seriously.
It’s hard to understand how the medical community has missed what Eric Krakauer called this “sea of suffering”. But miss it we have, so obsessed have we been with prolonging survival at almost any cost.
- Life expectancy,
- years of life lost,
- years of life lived with disability, and
- disability-adjusted life-years (DALYs)
have come to dominate the debate about progress in health.
These are powerful measures, to be sure. But the great innovation of the Lancet Commission was to devise a new metric—severe health-related suffering—to uncover the epidemic of suffering afflicting communities worldwide.
This makes so much sense, and intractable pain would certainly fall within this metric.
Yet, there are those who tell us that “pain is normal, but suffering is optional”, as though some clever mental jiujitsu could transform the unrelenting assault of pain into a mere inconvenience.
If we do suffer from our pain, we’re accused of catastrophizing, exaggerating the negative, dwelling on our losses, mourning our lost capabilities, instead of cheerily “accepting” the pain that’s wrecking our lives.
Universal health coverage will only be universal if it includes palliative care.
The forces that continue to marginalise palliative care are powerful.
Stigma tops the list. Medicine regards the alleviation of suffering as someone else’s problem.
Palliative care is too often seen to indicate failure—the failure of medicine to cure
The hubris of modern medicine is that it cannot face up to failure.
The deification of biomedicine as a discipline dedicated exclusively to survival has created an anti-humanist and quasi-theocratic science of health.
Indeed, like measuring and controlling the number of opioid milligrams instead of measuring and controlling our pain.
…palliative care is not about failure. It is fundamental to any notion of human dignity in the face of illness or disease
Measurement is a first step towards independent accountability.
And measuring pain would require action, but we’ve just recently dropped the requirement to measure pain (as a 5th vital sign).
Pain and suffering seem irrelevant in modern healthcare. Medical treatment is considered successful only if it can manipulate your biochemistry to keep you alive.