Important Legal Victory for People Under Guardianship in Pennsylvania

Last month, there was an important legal victory for people under guardianship in Pennsylvania.  The Supreme Court of Pennsylvania issued its ruling in the matter of D.L.H.  This appeal was made by the guardians of a man with developmental disabilities.  As reported in this 2009 blog entry, a lower court severely limited a guardian’s power to refuse life-sustaining treatment for someone who was neither in an “end-stage” condition related to disease or permanently unconscious.  The ruling applies to individuals who never had the decisionmaking capacity to have made choices to refuse treatments such as temporary use of a ventilator (to use one example).  But go back and read the original post for the full summary by Mark Murphy, Legal Director of the Disability Rights Network of Pennsylvania (DRNPA).

DRNPA filed an amicus brief in the Supreme Court case, and was joined by NDY, the Arc  of Pennsylvania, Achieva, Vision for Equality, Liberty Resources, Inc. and Pennsylvania Developmental Disabilities Council. 

Here is the brief victory message sent out to disability advocates from Mark Murphy:

The Supreme Court of Pennsylvania has issued its decision in In re D.L.H., which involved the issue of whether guardians may refuse to authorize life-preserving treatment to persons who 1) lack, and who may always have lacked, capacity to make personal health care decisions; and 2) are not in an end-of-life situation or permanently unconscious.

I am pleased to say that the Supreme Court has agreed with the arguments put forth by the Department of Public Welfare and supported by the amicus brief DRN filed on your groups’ behalf.  The holding of the court is as follows:

“We hold that where, as here, life-preserving treatment is at issue for an incompetent person who is not suffering from an end-stage condition or permanent unconsciousness, and that person has no health care agent, the Act [Act 169] mandates that the care must be provided.”

An easily accessible web-based copy of the decision has been posted at Leagle.com here.
The Court’s pdf version of the decision is here.

It looks like – for now, anyway, that’s one state that may provide relative safety for people under guardianship in regard to getting appropriate life-preserving medical treatment.  Unfortunately, that leaves a lot of states in which the status of people under guardianship status may be less protected – specifically in Connecticut and Wisconsin, where individual battles have been fought to protect the lives of people under guardianship.  Those are just the ones that we know of.  I suspect that there are problems in many other states.

Interestingly, this major court decision has gotten no mainstream press coverage.  There hasn’t been any comment or reaction from UPenn’s Art Caplan – a prominent bioethicist who writes on court decisions that relate to bioethics.  In fact, he published a column regarding the Betancourt decision in New Jersey.  In that column, he lists a lot of players that should be at the table hammering out sensible and transparent guidelines regarding the absolute limits of medical care (in other words, futile care policy).  Missing from the list is any mention of disability advocates – in this case the omission is especially interesting considering the number of disability advocacy organizations that got involved in the futile care case as co-amici.

I’ll be interested to see if he gets around to writing on important court decisions in his own state – Pennsylvania.  –Stephen Drake