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Still haunted by a grandmother's suffering

Posted by Dr. Lachlan Forrow  April 1, 2013 03:37 PM

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"The end of my grandmother's life proved to be a nightmare", wrote Janet Lynch Schuster in yesterday's New York Times "Sunday Dialogue: Choosing How We Die", clearly still haunted by the way her grandmother died nearly 20 years ago.  

Why was it such a "nightmare"?

"Her physicians could not treat her intractable cancer pain.  I would have done anything to end her suffering, but hadn't the means or the knowledge", writes Ms. Lynch Schuster, who then goes on to observe that "Legal 'aid in dying' might have spared her such overwhelming pain..."

It was unconscionable even 20 years ago that anyone's grandmother had doctors who could not control her pain.  The right dose of narcotics for a dying patient is the dose that controls the pain, no matter how high, and doctors who do not understand this are not competent.  In difficult cases where narcotics are inadequate, recent advances in pain management give us other effective options, including deep sedation of patients if required to relieve suffering and ensure comfort.

The possibility that a patient might prefer suicide (whether physician-assisted or not), simply because s/he does not have access to clinicians who can reliably prevent or alleviate their suffering, should haunt, unite, and mobilize us all, regardless of our views on legalizing so-called "aid in dying."

I opposed the Massachusetts ballot initiative last fall that proposed legalizing physician-assisted suicide.  This was in part because I believe that a moral prerequisite to legalizing "assisted suicide" is ensuring that all patients have reliable access to other basic palliative care options, including skilled treatment of pain and other causes of suffering.

Fear of unbearable future suffering is itself a tragic source of suffering for far too many patients today.  It is true that having a lethal prescription at hand can take that fear away, as Betty Rollin wrote in response to Ms. Lynch Schusters's "Invitation to Dialogue":

...Many people in Oregon and Washington, where one can legally die with the help of a physician, get the lethal medication and wind up not using it.  They don't need to.  They have what they need without actually taking the final step: peace of mind, a sense of being in control."

For the overwhelming majority of patients, "peace of mind" about whether suffering will be adequately addressed is achievable by ensuring the prompt, universal availability of skilled palliative care.  Nonetheless we do know, based on the experience in Oregon, that a very small minority (roughly 2 out of every 1,000 patients) will still choose assisted suicide.  So we should continue to debate that issue.

But there should be NO debate about the urgency of ensuring that NO terminally-ill patient ever suffers the way Ms. Lynch Schuster's grandmother did.  We all know that this still happens.  And it will continue to happen until our health system starts being held accountable for making skilled palliative care services promptly available to all patients who might need them.

Faith communities are among the partners who could take the lead on this, especially (but not only!) those who oppose letting anyone have the option of physician-assisted suicide.  For example, as Father Myles Sheehan, currently leader of the New England Province of the Jesuit Order, said years ago in a U.S. Catholic interview,

Catholic leaders...need to lay down the law about standards our church has set for care at the end of life...Bishops should say, "I will take very seriously cases of untreated pain as a violation of Catholic ethical guidelines.  Dying in untreated pain is an offense against God and against humanity."


This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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