Sunday, January 23, 2011

Legal Restrictions Compromise Effectiveness of Advance Directives

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:

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. 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

7 comments:

risaden said...

Excellent review of this sketchy and potentially harrowing issue. From a palliative care communications position, it would seem that, since Ted wishes to go home, that he stipulate with his family beforehand that they honor his wishes. Or request that they come visit him on his terms. Perhaps someone from his palliative care team (or hospice team) could help negotiating this difficult, and all to common, situation.

Christian Sinclair said...

Great post and very timely as I am helping the National Healthcare Decisions Day team implement their new website and social media efforts. Will likely post on this as well, even though at first it seems to undermine any efforts to get more people to complete advance directives. I see this as more of a rallying cry. Like trying to get better reciprocity laws in those states.

I would say give Ted my cell phone number and have the doctor call me when he get to Michigan if there are any issues.

ken covinsky said...

The article is a fascinating and an important lesson about the over legalization of medical care. The article suggests that a central problem is that the law views an advance directive as a legal document, almost like a contract. This leads to excessive rigidity that deters their effectiveness.

Nathan said...

The patchwork of state laws is truly unfortunate, and it does serve as a barrier to having people make their wishes known.

There are a variety of resources, including free advance directives for each state available at the National Healthcare Decisions Day website: www.nhdd.org, so I'd encourage Ted to download one for each state.

Even if people are daunted by the documents, they should still have the conversation about their wishes with their loved ones. In many cases, that piece of the puzzle is missing, and it needs to come before (or at the same time as) the document(s).

Fern Wasserman said...

This article is excellent.

I am a nurse and I work with people on completing their advance directives.

Often when I am working with someone on their Advance Directives I am asked if they will be accepted in another state. I suggest that if they plan on staying or living in a particular place for a length of time complete that states advance directives as well. I further suggest having the document notarized regardless that New York state does not require it. I am aware that many states have reciprocity but not all states.

In my experience, I don't know many physicians that know the legal requirements of these documents. I find that it is the nurse and the social worker who advise on these requirements.

Primarily, I feel the key issue on advance directives is for the person to share their wishes with next of kin and their identified health care agent and alternative agent so that they may advocate for them as their surrogate and make this person's wishes known to the health care team that is caring for them.

It is frustrating that the law can be obstructive. I suggest to my clients that if there is an issue to contact the legal department of the hospital. I know that the requirements are different across states but the primary goal is to provide the patient the ability to make decisions in advance and to have these decisions honored. If the agent is able to communicate these wishes to the health care team and is able to make a case that this is what the person wants, do they just throw out the document just because it came from another state? Certainly the health care agent needs to go through more steps, but can the agent make this persons wishes known and have them honored.

I am curious to know if there is any case law on this.

I think this is a work in progress. We need to frame this in that advance directives were only around since 1967 and PSDA (the Pateint Self Determination Act) is only around since 1991. The way we treat patients has evolved. A time of doctor knows best has come and gone. People are living longer in various levels of ability and disability. Medical advances have allowed these different levels of existence.

The primary issue is getting people to complete the advance directives but more so share their wishes with their health care agent, family and loved ones so that everyone is on the same page. I feel that this conversation should not take place in a vacuum. Health Care professionals need to be involved in this conversation so that the person completing these advance directives is able to clearly understand the ramifications of their choices.

This is not an easy conversation. It is not filled with absolute yeses and nos.

DieLaffing said...

Georgia accepts advance directives from other states as long as the care that the patient desires is legal in Georgia.

However, if you want your DNR wishes honored, stay out of our hospital system.

Our PallMed MD and I just spent the preceding 9 weeks preparing for a debate with our hospital legal team about state law, advance directives, POLST, and patient rights.

We collected state and federal code, case laws, the Federal Omnibus Budget Reconciliation Act of 1990 (PL 101-508), and relevant EOL opinions from leading US bioethics think tanks.

It was a harrowing, frustrating meeting. The legal team's decision stands firm: a person with capacity may not refuse CPR, nor may a health care agent refuse CPR for a patient without capacity, unless the patient has "a terminal disease" and "is in a state of permanent unconsciousness" or "is deemed to be someone for whom CPR would be futile".

When does a physician know unconsciousness is permanent, particularly if a patient does not meet 'brain death' criteria?

There is no legal definition of 'futile CPR' in Georgia. I could not find a federal code definition. Do other states have a code that legally defines this?

Am I wrong to fear it is possible that every patient at our hospital is a candidate for CPR regardless if they want it or not?

pharmacy feedback said...

Certain laws affect medical procedures.