Human Exceptionalism

Invisible National Hospice/Palliative Care Month

Did you know that November is National Hospice and Palliative Care Month? A time when hospice organizations publicize the truly compassionate care for the dying and those in pain? A time when media should be presenting high-profile stories of dying patients receiving excellent care and living quality lives?

Oh, you didn’t hear any of that? Neither did I.

All we hear and see in the media on this important issue are: SUICIDE IS DIGNITY! BRITTANY MAYNARD! Hospice? What’s that?

Indifference has many mothers:

1. Assisted suicide advocates damn hospice with faint praise and falsely imply–or state–that the care is inadequate to prevent death with agony. Indeed, Maynard eschewed hospice, stating both that she wanted to put herself out of her family’s misery (my words) before significant decline, and apparently, accepted a worst case scenario for her own future. Hmmm. I wonder who might have given her that idea. 

2. Hospice has gone silent on fighting assisted suicide–betraying their own calling–as hastened-death is directly antithetical to its purpose of helping dying people live with dignity. Part of the problem, I think, is that hospice has been partially co-opted by assisted suicide advocacy and, in my experience, those in charge fear controversy and its potential impact on fund raising.

3. Hospice is seen wrongly by many as an “abandon hope, all ye who enter here,” endeavor. Why? In the USA, we force people to forego life-extending treatment or curative care to receive the benefits of hospice. But hospice is all about hope! As Art Caplan and I wrote in USAToday recently:

Hospice is all about realistic hope: hope of not being in pain; hope of being able to enjoy family until the very end; hope of maintaining a good quality of life throughout the dying process; hope of dying at home surrounded by those you love.

4. A few hospices alienate those they serve, by making the service about death instead of life. For example, by refusing tube-supplied food and water, on the basis (false) that it is life-sustaining care. (If sustenance isn’t comfort, what is it?) In any event, ending the cruel choice would do away with confusions that cause some hospices to pursue wrong strategies of care.

5. The media chases blood and controversy. A dying patient saying that he or she wouldn’t have missed the experience for anything–happens all the time, in hospice–is not seen as selling newspapers or getting internet clicks.

6. The media are deeply ideological, generally loving transgressive and radical causes at the expense of traditional forms of care and values. Assisted suicide fits the bill, hospice impedes the change-for-change’s sake agenda.

7. People avoid dying issues like the plague. We don’t like being reminded of our mortality.

That’s not an exclusive list, but the many factors thwarting hospice vitality are causing unnecessary suffering that could readily be relieved.

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