Many of us still remember the case of Terri Schiavo, the former Pennsylvania woman who became a cause célèbre as her husband and her parents fought a highly publicized and prolonged series of legal disputes as to whether to terminate Schiavo’s life support.

Schiavo had suffered brain damage that left her in a permanent vegetative state, and her husband Michael Schiavo argued she would not have wanted to live that way. In 1998, Terri Schiavo’s husband successfully petitioned the Sixth Circuit Court of Florida in In re Guardianship of Schiavo, 780 So. 2d 176, 177 (Fla. Dist. Ct. App. 2001), to remove her feeding tube. Schiavo’s parents insisted she could recover and vehemently opposed Michael Schiavo’s efforts to remove her feeding and hydration tubes. (See Schiavo ex rel. Schindler v. Schiavo, 403 F.3d 1223 (11th Cir. 2005).) By the time Terri Schiavo’s life support was terminated after a seven-year delay in 2005, the case involved 14 appeals in the Florida courts; five suits in federal district court; Florida legislation struck down by the Supreme Court of Florida; federal legislation; and four denials of certiorari from the Supreme Court of the United States. As Schiavo left no written instructions in case she became disabled, the case focused national attention on living wills, exposing both the importance of having one’s wishes documented, and the importance of having a designated health care agent.

Sherry Barone and Cynthia Friedman had been together for 13 years when Friedman died from cancer. Backed up by Friedman’s parents, Har Jehuda Cemetery, where Friedman was buried, refused to act on Barone’s instructions to include the words “beloved life partner” on the headstone. Barone filed suit in Barone v. Har Jehuda Cemetery, No. 97-2599 (E.D. Pa. filed Apr. 15, 1997). As Friedman had left a will that appointed Barone as executor and expressly authorized her to arrange for the disposition of Friedman’s remains, the cemetery eventually settled, agreeing to erect the headstone in accordance with Barone’s wishes, in part due to Friedman’s will. Had Friedman not documented her wishes, this case would have surely had a different outcome. Instead, it highlights the vital importance of having a will as evidence of one’s wishes, especially when there may be conflict between the chosen family and family of origin.

In 2007, the Pennsylvania legislature, partly in response to the Schiavo case, changed the law governing living wills. But the new rulebook, as it were, can give greater authority to someone other than the intended person. Act 169, which took effect on January 29, 2007, made sweeping changes affecting health care powers of attorney and living wills. (See 20 Pa. C.S.A. § 5451 et seq.) The act provides a statutory means for competent adults to control their health care by written instructions, or through health care agents or representatives and requested orders. The act also reauthorized out-of-hospital do-not-resuscitate orders, and — for the first time — authorized actions by health care representatives.

The law does not recognize relationships with partners, family or friends in the same way that it recognizes those of legally married spouses. In families where the members may not have a legal connection to one another, like some lesbian, gay, bisexual and transgender (LGBT) families, medical and financial powers of attorney, living wills, wills and designation of remains documents are especially important.

Of particular concern is that unless a patient designated otherwise, the patient’s health care representative will be determined by a statutory list that generally gives priority in the following order:

i. The spouse, unless an action for divorce is pending, and the adult children of the patient who are not the children of the spouse.

ii. An adult child.

iii. A parent.

iv. An adult brother or sister.

v. An adult grandchild.

vi. A close friend. An adult who has knowledge of the principal’s preferences and values, including, but not limited to, religious and moral beliefs, to assess how the patient would make health care decisions.

As a result, without legally executed documentation, the wishes of incapacitated or deceased LGBT people can be disregarded or contested by individuals or institutions.

To this end, a free LGBT legal clinic is scheduled to be held at 11 a.m. October 27 at the William Way Community Center, 1315 Spruce St., Philadelphia. Attendees will learn what legal documents are needed for estate and family planning. Volunteer attorneys will be available to prepare these documents for clients, at no charge. The clinic is open to the public and lunch will be served. For more information on volunteering or attending the LGBT clinic, contact or call the LGBT Elder Initiative at 267-546-3448.

The LGBT legal clinic is part of a collaborative effort with the AIDS Law Project of Pennsylvania, Jerner & Palmer, Amy Steerman, Attorney at Law, William Way Community Center, Mazzoni Center Legal Services, the SeniorLAW Center, Blank Rome, Ballard Spahr and Philadelphia Gay News. •

Ronda B. Goldfein is the executive director of the AIDS Law Project of Pennsylvania and can be reached at

Adrian M. Lowe recently joined AIDS Law Project after graduating from Temple University’s Beasley School of Law. He is passionate about legal service provision at the intersections of LGBT lives and state systems, particularly public health.