Saturday, July 7, 2012

Quick Links: You should be reading...

It's been one hell of a long spring, one unnaturally stretched to the front edge of July by a conference at work and a conference in Chicago.  The later was the product of efforts by Compassion & Choices to gather and motivate the troops (the former was a gathering of religion and media luminaries hosted by my employer, NYU).  In Chicago I got to hang out with some of the folks who are busy working at the intersections of faith, advocacy, ethics and medicine.  The trip out there payed off in a chance to cavort with people I've been in touch with since I started paying attention to end of life issues, participation and attendance of some informative panels, a new research location for my book, and one particularly interesting panel invitation (NY Law School, I'll keep you posted).

As I prepare to head out on a longer research trip in a few weeks (Montana, Seattle, LA) and, god willing, getting some rest after two whirlwind work years, I'll be hanging out here more often.  I hope you'll join me.

And while you're at it, read Bill Peace's comment to my prior post!  Bill and I are friends; he's disabled and I'm not; we disagree on a number of things--and not always respectfully, of course--but we keep the friendship going.  My response to his comment is:  What--legislatively, practically, pragmatically--does his experience as a discriminated member of society have to do with the legalization of aid in dying (or even removal of terminal patients from unhelpful treatments, etc)? 

I think I know what Bill's answer would be.  Discrimination is real and so is fear.  People confuse and conflate disability with terminality all the time.  I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including "pro-life" organizations that have worked very hard to recruit disabled individuals and groups to "their side"--with scary threats of a "culture of death" just waiting around to kill off the "abnormal."  But--and this is really, really important to my point--Bill's had to fight his entire life to make his own health care decisions, to convince everybody that his pain and his life are worth something to him.  Individuals wanting to do the same are no threat to Bill.

Some good links I came across this week:

Alex Smith at GeriPal on how to explain what hospice is new medical students, interns...

What's wrong with eradicating breast cancer in newborns?  Or Down Syndrome?  I want a real answer that doesn't romanticize disability and doesn't compromise the respect given to those currently living with disability.

Simon Rippon at The University of Oxford tries to pull apart the three strands of what we now call persistent vegetative state (PVS):  "locked in," minimally conscious, and PVS.  The reason for his diligence?  To ask who can end their life.

The August issue of the Journal of Hospice and Palliative Nursing is now available.  Note that you don't have to subscribe or be a member, you can purchase individual articles.

Don't miss the recent flare-ups about aid in dying in Canada (and here and here).


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