Occasionally I get a touch cranky.
I want to clearly say that palliative medicine and those who offer it to its fullest deserve our gratitude. And I don’t want to alienate any palliative provider I might ask for assistance in the future.
But I remain highly skeptical and deeply worried because every exposure I have to palliative providers publicly discussing euthanasia reiterates their opposition to patient-directed dying where that includes death with dignity or physician aid in dying.
Because docs speak with some inherent authority and can cite their experiences of hundreds to thousands of deaths, their viewpoint seems influential.
I speak only from the experience of the traumatically hospitalized deaths of the only parents I had, where we thought we learned the ropes the first time, with — I’ll write it here as I say it to myself — buffoonery, from start to finish, incompetence, neglect, abandonment, harm both social and medical (MRSA), including in a Jayco 100 facility of regional reknown.
Once bitten, twice shy. Twice bitten, thrice shy. Since I’ve been medically “bitten” since (more in-hospital dubiousness during a sister’s midlife curative hospitalization that totally kaboshed proxy management and which occurred after I published the book so I couldn’t include the vital lesson), I’ve come to thrice bitten, a zillion times shy.
Providers must exude hope, it goes with and in their territory. That includes hope that all the gears in their worlds will mesh flawlessly so that our medical experience will come up smelling like roses, to metaphorize it. Trouble is, when we’re about to push up daisies (to euphemize it), the stakes are quite too high to expose ourselves to failure to die in peace when what we say we want, over and over, is just to die in peace.
I recommend reading Tom Preston MD’s new book, Doctor Please Help Me to Die. He articulates all what’s underneath the “palliative’s can’t help us go peacefully” quandary, cutting through all the exquisite ethical slicing and dicing to present some startling conclusions. I’ll review it in a subsequent blog post.
Meanwhile, the bone I have to pick, while mine still have meat on ‘em, is that you and I own our deaths and medicine ought to serve us. It ain’t that medicine owns our deaths and we ought to serve it (them), in any capacity.
What do you think? What does it mean to own your dying? What’s required of you, to know and to do? Do you know it? Or, is dying in peace a whimsical promise, perhaps sketched in by a living will?