Monday, June 24, 2013

Proposed Changes to Organ Donation Blur The Line on End of Life Care

Rolling into work this morning, NPR reported on a radical change in organ donation policies which could profoundly change how palliative care is perceived and how families and health care professionals make those very challenging decisions at the end of life.  At the heart of the effort is an attempt to increase the number of organ donors of course but the ethical question is in how to achieve that noble goal. Among the changes under consideration is the ability for hospitals and organ procurement organizations (OPOs) to make their own policies on how to approach families and patients about organ donation instead of following national guidelines.

I've have worked with OPOs in the hospital setting and have had overall some very good professional and ethical experiences.  But allowing too much individual variation could lead to abuses of the system which would negatively impact patients and families.  Why wouldn't their be best practices from which all the sites could rely on? To go from national standards to individual policies that could be unduly influenced seems to be a regression of ethics.

There must always be a clear line between the clinical team treating the patient and the team with the skills and ability to harvest organs from a deceased patient.  That has been a long held standard of transplant ethics and is reinforced in the story by a bio-ethicist, Dr. Stuart Youngner.  In the audio version of the story (not the print version) Dr. Youngner also mention that in one hospital he works with the organ transplant team tries "to be introduced to families early, not as organ procurement organizations but as end-of-life care specialists."

Hello!  Alarm bells?!  Palliative care teams need to be very aware of this potential and need to talk to OPOs and their transplant teams about this potential blurring.  We need to have cooperation and discussion to make sure we are collaborating but again a firewall is needed to protect the patients currently under our care.  I think there are several ways hospice and palliative care can work with OPOs.  National Healthcare Decisions Day and advance directives for starters? Interestingly I could not find anything more than this NPR story about the UNOS meeting today and tomorrow.  There is an open session and I for one would be very interested in the outcomes.

If you have experiences as a palliative care professional (hospice or hospital) with OPOs, please share them in the comments below.

Coda
After listening to the article I also have two tips for any journalists covering stories like this:
1. Avoid phrases like 'increasingly popular' when describing organ transplant methods.  This isn't a homecoming contest.
2. Do not say 'discontinue care.' Care is never stopped.  We always keep caring.  Technology and treatments can be stopped, but never caring.

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