Imagine that you are caring for Ted, a patient in hospice who would like to go from Los Angeles to Michigan to see his family one last time. His same-sex partner opens up to you that he is worried about what would happen if Ted became sick while in Michigan, as his family there are very religious and don’t necessarily agree with Ted’s end-of-life wishes. Not to worry, you say, Ted has a valid advance directive that his same-sex partner is his health care agent. Then you pause and think. Hmmm… Maybe there is something to worry about.
According to a new study in the Annals of Internal Medicine you should be worried. The study, authored by Lesley Castillo, Brie Williams, Sarah Hooper, Charles Sabatino, Lois Weithorn, and GeriPal’s very own Rebecca Sudore, surveys the medical and legal literature from across the United States. There is a lot of great information in the article making it a must read for anyone interested in advance care planning or the confusing intersection of health and law.
The authors note five main barriers that prevent individuals like Ted from making and communicating their end-of-life wishes and having them honored. These barriers include:
- Inadequate reciprocity: this is what should keep you up at night when Ted flies to Michigan. An advance directive document executed in one state may not be accepted in another. Michigan, Kentucky, and Wyoming have no reciprocity laws. Even if there were reciprocity laws, the patchwork of mandatory language and restrictions makes it anyone’s best guess what will happen when advance directives get interpreted in other states
- Agent or surrogate restrictions: What if Ted didn’t name a health care agent? Would a same-sex domestic partner still have standing? Only 8 states recognize domestic partners in their health decisions law (Arizona, Maine, Maryland, New York, New Mexico, Nevada, Oregon, Wisconsin, and the District of Columbia). Married same-sex partners may be recognized as valid default surrogates in some states. In others, a domestic partner may fall to the end of the next of kin priority order (relegated to a “close friend”). Also, there may be restrictions in what a surrogate can do in regards to withdrawal or withholding of life-sustaining treatments like artificial nutrition or hydration.
- Poor readability: Aside from the example of Ted, there are other vulnerable populations that are put at risk with some existing barriers. Some states require that advance directives documents be in English, regardless of the patient’s native language, or that certain legal terms be used in these documents. These barriers can make it hard for low literacy individuals from communicating their preferences in advance directives.
- Execution requirements: Oral advance directives, a mainstay of my practice in the hospital, are not accepted in some states. States also have varying requirements for legally valid advance directives. For instance, most require 2 witnesses and some also require a notary.
- Religious/social/cultural concerns: Advance directives may not permit the expression of certain cultural, religious, or social preferences. These include whether one wants a family instead of one individual to serve as the surrogate, or that certain religious rituals be observed after death.
The authors have some suggestions to “help restore the clinical effectiveness of advance directives and ensure that patients’ wishes are heard and honored.” These include having all states adopt nonrestrictive reciprocity laws for directives from other states; taking out mandatory legal language to ease readability; relaxing health care agent and surrogate limitations to expand the potential pool of medical decision-makers; and promoting universal acceptance of oral advance directives and lifting of witness and notary requirements.
The merits of some of these suggestions are questionable, as they may relax some of the legal provisions that protect against abuse. For instance, wouldn’t the recommendation of allowing medical personal, like case managers, to act as surrogates increase the potential of having conflicts of interest? I do worry about this especially in for-profit entities.
But, lets get back to Ted. Do we tell him to go to Michigan and hope that he won’t get sick while there? Do we recommend that he stay in LA? Should we recommend him hire a lawyer in Michigan prior to boarding the plane?
Unfortunately, I don’t think we know for sure what would happen if Ted got sick without a Michigan advance directive. I’m guessing most health care providers would go by the California advance directive. Most probably wouldn’t even know that a California advance directive isn’t legally binding in Michigan. Therein lies the problem with this all. Law and medicine talk different languages. They both think that the other understands what they are saying. Experience has shown that they don’t. Sorry Ted.
by: Eric Widera