Living Will and Health Proxy Ramblings

Summary: Living wills, health proxies and HIPAA releases are all essential documents everyone over age 18 must have. Since it seems that the only planning topic folks can talk about lately is estate tax repeal we hope this topic is a break from “repeal” and will serve to emphasize that tax issues remain but one part of the much larger estate planning picture. There have been a number of recent articles in general media that raise some interesting questions about health care decision making.

Basics and Definitions

While everyone knows what these 3 documents are, let’s define them quickly before exploring some of the issues that can arise. A living will is a statement of your health care wishes. What do you believe, how do you view end of life decisions from a religious, philosophical and personal perspective? Although not recognized in some states signing a personalized (not boilerplate got it off the internet cheap) living will can serve as a wonderful tool for communicating in clear written terms what you do and don’t want done. A health care proxy is a document in which you appoint an agent to make medical decisions for you. You should also name several successors and be certain to enumerate in some detail powers or rights you do, or don’t, want your agent to have. A HIPAA release is an authorization that can be used to authorize medical providers to release private health information. While all this sounds simple the complexities and potential for problems are huge. Let’s explore some of these.

Communicate!

How important is specifying your wishes in these documents and discussing your feelings with loved ones? Plenty! A recent blurb in Bottom Line Personal newsletter noted that hospital delirium is common. 25%-50% of older adults admitted to general medical wards are affected and 68-80% of those on surgical floors or in intensive care experience delirium. The delirium includes reduced ability to focus, disorientation, agitation, etc.

Religious Differences

Religious considerations can be very important to consider when preparing your living will, in selecting an agent for your health proxy, and in delineating the authority granted to that agent. Too often people rely on standard forms and never address religious issues. That’s a problem. If there is no mention of religion in the documents your wishes cannot realistically be interpreted. If coupled with unclear appointment of agents and family differences concerning religion, it could be a tinderbox.  But does specifying your religious preferences in these documents avoid any conflict? Unfortunately not. It is a good start but differences between the religious views of family and loved ones may need to be addressed to minimize conflict. Grandson is quite devout, while mother is barely observant. How might this play out? Do religious undercurrents exist? Great care should be taken to be very specific in mom’s living will and health proxy about any matters pertaining to religion, and issues that might raise religious differences. Generic statements as to religious observance can sometimes be more difficult to interpret and apply than documents that don’t address the issue. The health proxy should be very clear about the appointment of agents: Who is to serve? Is a single agent instead of multiple agents? Is there consistency in your religious views and those of the agents?  If your living will violates the family’s overall religious beliefs tremendous conflict may follow. Can you mitigate this by discussing these issues in advance? Can you slightly modify your statements so that you remain generally true to your feelings while creating less offense to others?

No Religious Adherence

If you do not wish your faith’s restrictions and rituals to apply, can you address this in a manner to at least limit the collateral damage? Consider: “I am of the X faith and wish to expressly state that I do not wish X faith religious law to apply in the determination of end of life medical and related decisions. Those decisions shall be made in accordance with the provisions of this Living Will regardless of the impact of X faith law. I do not lightly make this statement, and I am aware that this statement may offend the religious perspectives of some of my descendants. It is not my intent to offend or hurt anyone in any manner, but merely to carry out my personal beliefs in what I believe to be very private matters. If any particular agent is unable to carry out the wishes I have set forth because they view them as inappropriate, I respect that decision and merely request that they resign as agent.”   

Whacky Personal Provisions

Tailoring your documents to reflect your personal wishes can be a good thing. But too often attorneys will seemingly put anything a client suggests in a document with little discussion of the impact. Tailor yes, but don’t suspend reason. The following provision was found in an existing health proxy. While this one might make the Guinness Book for the worst provision the issues raised are instructive in a broader context: “Therefore, at the onset of a disease such as Alzheimer’s, and if it doesn’t entail undue legal risk, I request that my health care providers or health care attorney-in-fact assist me in the termination my life in a painless, dignified and private manner.” Whoa! ◙ At what point does the “onset” of a disease occur?  A recent New York Times article discussed a possible genetic test to determine 10 years in advance of symptoms that a person has Alzheimer’s disease. Would that be “onset”?  ◙ Alzheimer’s is a chronic illness that progresses over time.  It progresses at different rates for different people.  Research studies have shown that the level of care that a person receives impacts life expectancy.  The average life expectancy for someone diagnosed with Alzheimer’s disease is approximately 4.5 years.  Apart from possible religious principals, would anyone willingly give up 4.5+ years of life? ◙ Aricept, as an example, a drug currently indicated for mild to moderate Alzheimer's, may be effective for moderate to severe disease. Other drugs are also in development. Should current and future drug therapies be left out of the equation?  ◙ What is a disease “such as Alzheimer’s”?  Every chronic illness has a different disease course.  Is Parkinson’s disease sufficiently similar to Alzheimer’s? What of vascular dementia?  The terminology is so vague as to be impossible to appropriately interpret. ◙ What is undue legal risk? Should your agent first relocate your domicile to a state like Washington, or a country like Holland, were assisted suicide is permitted under certain conditions?

Of Nutrition and Feeding Tubes

Ask almost anyone if they want to be kept alive on feeding tubes and you’ll hear a definite “No!” But it is far from simple. Just what is a “feeding tube?” Is the reference to the feeding tube you don’t want a temporary naso-gastric tube inserted through the nose into the stomach while you are awake? Or is it a PEG (Percutaneous Endoscopic Gastric) tube which is inserted in a more invasive procedure?  Were you aware of these when you made a generic objection? Under what circumstances would you really not want or not wish one or the other? If you are conscious and aware, would you really turn down measures that would prolong your life? Most people when asked the questions assume, erroneously, that they are in a vegetative state when a feeding tube would be administered. Details are important. Many faiths have issues with not providing nutrition. A concern of some religious advisers is that if a feeding tube is inserted its later removal would be an affirmative act to cause starvation. They might contrast this to a decision not to insert the tube initially as being a passive act that may be less objectionable from a religious perspective. There was recently an article in the New York Times about palliative feeding that might change this entire analysis from both a practical drafting and religious perspective. The article concluded based on various studies that feeding tubes do not in fact prolong life. Instead, careful hand feeding to the extent the patient will take food, a tedious but perhaps loving process, can maintain life for just as long. What does this suggest for re-evaluating the entire process? Should living wills from a humane and religious perspective suggest the use of palliative feeding in lieu of more invasive procedures?  Whatever you decide, communicate it clearly and in writing.

Conclusions