Heather Welborn

by Heather Welborn

A vacation is meant to be a time of relaxation and carefree enjoyment, an escape to a tropical climate and days of leisure. Washington state residents Janice Langbehn, Lisa Marie Pond and their children embarked on a family cruise to celebrate the couple’s eighteen years together. Tragedy struck onboard ship off the coast of Florida: Lisa Marie suffered a massive stroke and was immediately rushed to Miami’s Jackson Memorial Hospital. Despite the couple having a legal advance directive that friends back home faxed to the hospital, Janice was not allowed to see her partner until five minutes before she died.

What went wrong? At first, the hospital’s cruel treatment seemed to be ugly bias against a same-sex couple. But the hospital cited a troublesome loophole: the legal document giving Janice the power of attorney to serve as Lisa-Marie’s health care proxy did not specify that Janice should be allowed to visit Lisa-Marie. The hospital may have denied other proxy-holders access to their loved ones, regardless of gender.The federal Patient Self Determination Act gives every person in the United States the right to determine their end-of-life care through an advance directive, which includes a living will and a durable power of attorney of health care where a proxy is named. Every state allows competent adults to fill out advance directives, but states do not guarantee the implementation of the advance directive at the hospital. In the health care law regarding advance directives, there are gaps in the law and confusion over what forms are necessary. We need better laws to ensure that everyone’s emergency and end-of-life care wishes are met - including the 70% to 80% of Americans who do not write advance directives.

In the absence of an advance directive, health care providers look to state law to appoint potential decision makers. Most states mandate a ranked order based on antiquated definitions of family that hinge on blood and marriage. As a result, people whose primary caring relationship(s) are not based on blood or marriage can be denied the treatment or company they would have wished for in dire circumstances.

My summer research at AtMP looked for ways to eliminate confusion over the implementation of advance directives and visitation rights documents. We outlined several recommendations, such as having states adopt a uniform, comprehensive health care law. This law would hold physicians accountable to educate their patients about their options regarding end-of-life care decision-making. It would copy Washington DC’s inclusive list of potential decision makers (or “presumptive order of hierarchy of surrogates”), and it would allow conscious patients to orally designate who is allowed hospital visitation.

Every person in the United States will benefit when everyone is able to determine their own end-of-life care, decisions are made in the patient’s best interest by the people closest to them, and we all can be in the presence of the people we most cherish during times of crisis. Our country should no longer tolerate the shameful barriers to care that caused the lonely death of Lisa-Marie Pond.

AtMP was lucky to have Heather Welborn as an intern last summer. We appreciate all the hard work she did!