What are the pitfalls? If I have an Advance Directive/Living Will and have appointed a Proxy, my wishes will be carefully respected, won’t they?
Unfortunately, not necessarily.
Even if you go through the process of creating the documents, there are still several reasons why your wishes won’t be followed. If you follow all the steps above you will have dramatically increased your chances, but we included this section so you would have a realistic understanding of where things have gone wrong for people like you in the past.
Here are the top reasons your wishes may not be followed:
The right people don’t know your Advance Directive and Durable Power of Attorney exist.
If you’ve gone to the trouble of creating the documents, but they’re not in the right place at the right time (usually the hospital or ER you show up to with little advance notice), then none of your providers will know your documents exist. Usually this is due to not having provided copies of your documents to your hospital, but it’s also fairly common for the hospital to have them, but the attending physician doesn’t know it. This is sometimes a case of your documents being on paper and the treating physician focusing exclusively on your electronic health record, which may not have an indication that the paper documents exist and should be respected during your treatment.
How to avoid? Make sure your PCP, your Proxy, any specialty physicians you use, and optimally your local hospitals all have copies on record. When you are admitted, have whomever is with you confirm that they’re on record and if not, provide copies immediately. Check again with your treating physician(s).
Your Advance Directive is on file, but it’s too vague, and your treating physician decides that it doesn’t apply to your specific circumstances at the time.
The bias amongst physicians and, more importantly, the hospitals they practice within, is strongly inclined to the most aggressive treatments available. And this isn’t just based on the financial interests of the institution; they have a very legitimate concern that if they do NOT treat as aggressively as possible, the family will sue them later. No hospital that I know of has ever been sued for providing too much care. Nor have they ever been sued for prolonging the dying process and making their patients’ miserable in their final weeks, days, or hours. But while it’s not common, some have been sued for what families have decided later amounted to less than ‘every available option’.
So hospitals have reason to be defensive. This often results in an overly defensive interpretation of your Advance Directive. It doesn’t take much imagination on behalf of your treating physician or another representative of the hospital to look at your chart, look at you, look at your Advance Directive, and find reason to assert that your AD doesn’t cover the situation at hand. And this is also not helped by the relative rigidity of the templates for Advance Directive forms offered by most states.
Further, remember that physicians have a strong emotional bent toward action to save and prolong life, and it can be very uncomfortable for them to go against that.
How to avoid? Be as specific as possible in creating your Advance Directive. Add an appendix or exhibit if your form doesn’t seem to allow for you to articulate all of your desires. Have detailed conversations with your Proxy and your PCP ahead of time that go way beyond just the specific contents of the documents and help them understand you, as a person. Prepare your Proxy to stand up for you and your rights.
Your Proxy doesn’t really understand what you would want.
This comes from either not discussing your wishes with your Proxy at all, or not to the depth necessary.
How to avoid? Pick your Proxy carefully. Then talk. Be very candid. And be sure to talk broadly about your feelings, values and beliefs so that your Proxy can project what you would want under ambiguous circumstances.
“In my 15 years of medical practice, these documents rarely — if ever — preserved the patient’s voice when it was most needed. I care for seriously ill patients in a hospital setting when they are most sick and often unable to speak for themselves. I also have usually never met the patient prior to meeting them in the hospital. In the rare event that the patient has actually completed an advance directive describing their wishes and I have access to these forms, the legalistic language makes them difficult to integrate into clinical care and often don’t help clarify patients’ values.
Worse yet are forms in which patients designate a person — usually a child — to speak on their behalf when they are no longer able to. Most of the time, patients have named someone with whom they have not discussed their health care wishes. I often find myself talking about decisions with a son or daughter who never had a conversation with their parents about what they wanted. Thus, children are left with the burden of guessing what mom would have wanted.”
Dr. Angelo Volandes, ‘End of Life Care needs an overhaul’, Boston Globe, April 15, 2015
Your Proxy has a pretty good idea of what you would want, but caves to pressure from your treating physician, your family, or their own emotions.
It’s hard to appreciate ahead of time how emotionally distressing these decisions are for your Proxy.
How to avoid? In addition to having enough of a discussion to ensure that your Proxy can project your wishes in ambiguous circumstances, your Proxy also just plain needs the backbone to stand up to the many voices around them encouraging more aggressive treatment. And they need to subordinate their own emotions, values and beliefs during very difficult times. They need to represent you. So pick your Proxy carefully. This is also the situation where your advance discussions to share your desires with a broader circle of loved ones pays off. If your Proxy has the unified support and trust of all of your loved ones, their job gets much, much less difficult.
It is often just as important to discuss with all of your loved ones the decision you’ve made with respect to Proxy as it is to discuss with the Proxy. Many family difficulties, hurt feelings, and lingering dysfunctional suffering result from resentments and disagreements about “what happened when Dad died”. Make sure that all parties that have a stake in your life, perhaps especially the ones who might disagree with your decisions and values you have set down, have been included in these discussions and that you feel you have extracted from them at least an understanding of your wishes and your determination of Proxy.
While these have all been common reasons why a person’s desires have not been followed in the past – you’re already well down the road to the proper planning and preparation that will maximize your chances of having your desires respected.
Remember: We coach, support, educate, and empower. We illuminate options you may not have known you had. But we don't decide what's right for you in your unique circumstances; only you can do that. And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.