Presented to the National Business Institute’s Estate Planning and Recovery For Elderly Clients
December 8, 2008
By Thomas J. Murphy
Murphy Law Firm, Inc.
When the durable healthcare power of attorney and living will is needed: discussing the Teri Schiavo case with your client and some misunderstandings created by it.
What is a living will?
Most living wills that I have seen appoint an agent to carry out the patient’s desires regarding end-of-life decisions. The patient decides and the agent implements that decision. It is a question of what the patient chooses (ie, substituted judgment) and not what the agent thinks is in the best interests of the patient.
Having a living will would not have avoided the ugly fight.
The Schiavo case points out two problem areas with most living wills. Living wills will usually only apply to the terminally ill, most often defined as unavoidable death within six months. The problem was that is was undisputed that Teri Schiavo was not terminally ill. The second problem involves implementing the patient’s desires. The Schiavo fight was a dispute over what those intentions were. Living wills will need to be re-drafted to include more specificity.
Make your intentions known.
Michael and Teri Schiavo lived with her parents during the first year of their marriage yet the end of life issue was never discussed.
Withholding life support is not an uncommon event.
According to the Chairman of the President’s Council on Bioethics, each year there are approximately 1.75 million deaths that occur in healthcare facilities. Of these, 1.5 million deaths (85%) are preceded by an explicit decision to stop or not start medical treatment. It is variously estimated that the number of patients in a persistent vegetative state (ie, where the cerebral cortex is irrevocably injured) ranges between 20,000 to 35,000. There is an additional 150,000 patients in a minimally conscious state, in which there is some minimal interaction with the environment.
End of life issues are not only for the elderly.
Both Terry Schiavo, Nancy Cruzan and Karen Ann Quinlan were in their 20’s when tragedy struck
Florida law was clear.
Florida has a surrogate decision making statute that is very similar to Arizona’s. ARS 36-3231. Both statutes name the spouse before the parents. This is also in keeping with our clients who invariably name the spouse before the parents when determining priority of appointment. The statutory order of priority in Arizona is 1) spouse, 2) adult child, 3) parent, 4) “domestic partner”, 5) brother or sister and 6) “close friend”.
A paradigm shift.
Until the 1990 Cruzan case, the medical community was steadfast in opposing the withdrawal of life support. Yet, only 15 years later, the medical community seemed to be quite united in approving the withdrawal. For an excellent book on the Cruzan case, read “The Long Goodbye: The Deaths of Nancy Cruzan” by William Colby. For a very informative panel discussion that included Mr Colby, obtain a videotape of the May 2004 MCBA seminar on end-of-life issues, available from the MCBA (602-257-4200 or www.mcbabar.org.)
An eating disorder may have caused this whole controversy over artificial nutrition and hydration.
Terry Schiavo weighed 250 lbs at age 18. She weighed 110 when tragedy struck, apparently due to a severe electrolyte imbalance caused by the weight loss and improper diet
The Schiavo fight started over money.
For the first five years after Terri’s heart attack, the husband and parents were in agreement. But then a $1M malpractice verdict was obtained. $300,000 went to Michael Schiavo and $700,000 went to a special needs trust created for Terri’s benefit. There are differing stories as to what happened next. Some sources say the Schindlers wanted half of Michael’s recovery. Other sources say it was a dispute over how the $700,000 was to be spent.
There are three deficiencies that I commonly see in the living wills (including my own) that I have reviewed. First, they often only apply to a patient who has been diagnosed as terminally ill. However, many patients, to include Teri Schiavo, may be gravely ill and in an irreversible condition but are not considered to be terminally ill.
Second, virtually all living wills are premised on the fact that all family members know what the patient would want to have done and are all in agreement on this. But when a dispute erupts, as in Schiavo, living wills are silent on how to address and resolve this.
Third, living wills typically offer very little practical or precise guidance to the decisionmakers beyond some general platitudes about undertaking no heroic measures.
Terminal and non-terminal conditions as the triggering event
Most living wills specifically apply to a terminally ill patient. But often the term “terminally ill” is not defined, which can create problems for healthcare providers. The most workable option is to use the Medicare definition of “terminally ill”, defined as death occurring within six months of the diagnosis if the condition runs its normal course.
But this does not solve all the problems. Several gerontologists have emphasized to me that patients with advanced Alzheimer’s or who have suffered a serious stroke are never considered to be terminal. It would also not include those patients in an irreversible coma or persistent vegetative state as well as those patients who may be conscious but enduring an unacceptable quality of life due to the injury or illness.
As a result, I have revised my living will to address three categories of conditions that will allow the agent or agents to make the decision regarding end-of-life care:
- a) an incapacitated person who is terminally ill,
- b) irreversible coma, brain death or persistent vegetative state and
- c) a greatly diminished and hence unacceptable quality of life.
The first category is for the incapacitated terminally ill patient. I use the Title 14 (probate code) definition of incapacity, ie, the inability to make or communicate responsible decisions about the person.
The second category of a patient’s condition is for an irreversible coma, brain death or persistent vegetative state (“PVS”). Teri Schiavo would have come within this category. Because of the media coverage of Ms Schiavo, I have already had several clients question the appropriateness of using PVS as a standard because much of media raised questions about what a PVS diagnosis meant and even if such a condition actually exists.
Unfortunately, much of this discussion was very inaccurate and misinformed. Since the early 1990’s, PVS has come to be a well-defined and recognized condition. The leading authority is the Multi-Society Task Force on PVS that issued a two-part article in 1994 in the New England Journal of Medicine that set forth the definition and clinical aspects of PVS. A diagnosis of PVS requires no awareness of self or the environment and an inability to respond to any visual, auditory, tactile or noxious stimuli. The distinguishing feature is intermittent sleep-wake cycles, where the patient opens his or her eyes with some reflexive response to external stimuli. But the response is only reflexive. There is no sustained visual tracking of an object or any fixation on a visual target. Likewise, other reflective actions such as gagging, coughing, chewing, blinking, smiling, grimacing or sighing may occur. Most PVS patients have fairly normal breathing and gastrointestinal functions and maintain a normal body temperature but are unable to experience pain, thirst or hunger
There seem to be two main points to emphasize to a client who may have some reservations about appointing an agent if the client should ever lapse into PVS. One point is that the diagnosis can only be made if the patient lacks all awareness. The second point is that at least one month must elapse since the onset of the condition before a diagnosis of PVS can be made. In other words, a doctor cannot make this diagnosis within hours or days of admission to a hospital. This has been a frequent concern of my clients since Schiavo.
The third category of a patient’s condition that will authorize an agent to act is if the non-terminal patient is incapacitated and suffering an unacceptable quality of life. The patient may be conscious and somewhat alert but the illness or injury has caused the patient’s condition to deteriorate to the point where live may no longer be worth living. This category would include the advanced Alzheimer’s patient or the patient who has suffered serious and irreparable injury from a stroke.
Guidance to the agent/decisionmaker
It is difficult for many of my clients to define or describe exactly when it becomes fruitless to continue treatment and accept a death occurring sooner than it otherwise might. It is also impossible to plan for every medical treatment or possibility.
This is where estate planning practitioners will need to get creative and even seek assistance of the medical community in drafting living wills. Most living wills are couched in terms of treatments, or what the medical community calls “interventions”. The typical living will have the client check off yes/no boxes dealing with specific interventions like CPR, dialysis, transfusions or chemotherapy. But this is just a tiny portion of all possible interventions. What of the other thousands of interventions or future interventions not yet invented or widely used?
The doctors that I have spoken with strongly discourage this approach. Instead, they recommend a broad, goal-oriented approach. It focuses on the result the patient wants to achieve and not on how to reach that result. My new, revised living will lists the following criteria for the agent to consider when making a decision:
- Inability to walk without the assistance of others or a wheel chair
- Experiencing pain most of the time
- Experiencing discomfort (such as nausea, diarrhea or weakness) most of the time
- Inability to control my bladder and bowels
- Having a feeding tube inserted into my stomach and/or being unable to be fed by a spoon
- Use of a ventilator that is required to keep me alive
- Inability to recognize family or close friends
- Incurring costs for the provision of medical care that will create a financial hardship for me, my family or other loved ones
The idea is to provide some objective guidance to the decisionmaker. The living will should indicate that any one or more of these criteria tend to support the decision to withhold or terminate life support. In other words, the decisionmaker is not compelled to withhold life support if one or more of the criteria exist. Rather, they are simply factors for the agent to weigh when exercising his or her discretion.
When I began to use this approach, I was surprised with my clients’ reaction. Some wanted to include some of these criteria but not all. Different clients removed different criteria. As a result, I have the client initial which ones they agree with. I am also considering having a blank space next to each criteria and having the client use a scale of 1 to 5 to rank them in order of importance.
This is far preferable to the approach often taken by practitioners that simply authorize the withdrawal of life support treatment if the burdens of treatment outweigh the benefits. Such an imprecise test is an invitation to litigation if a dispute within the family erupts. It will also create problems in those states where legislation may be enacted to impose higher standards in proving the patient’s intentions.
Schiavo emphasizes the need to provide the decisionmaker with some delineated and objective criteria to consider when making the decision. This is not an easy task for the estate planning practitioner who is discussing this with a young and healthy client who has never given much thought to any of this. A goal-oriented approach has worked well for me.
Disputes Regarding the Withdrawal of Life Support
Another difficult issue in the Schiavo case was the dispute that erupted regarding decisions made by Ms Schiavo’s husband/guardian. Virtually every doctor or hospital administrator that I have spoken with have candidly admitted that it is the family member who complains the loudest who will, at least initially, control the decision regarding termination of life support treatment. In other words, a hospital ethics committee will not authorize the withdrawal of life support if there is a family member who is threatening to hire a lawyer or complain to a local television reporter. While estate planning practitioners can argue over whether a hospital can lawfully exercise such authority, it is a foreseeable situation that must be addressed when drafting a living will.
I have made three revisions to my living wills to address disputes. First, I have included a new paragraph, captioned “Resolution of Disputes”, that names a particular person to make the final and binding decision in the event of a disagreement.
Second, in that same paragraph, there is a provision that states whom is excluded from the decisionmaking process, such as a troublesome child or in-law. This is to avoid what one colleague of mine has characterized as “the black hat on the white horse”, such as the child who has not been in contact with the family for many years but who suddenly appears and wants to control the decision. This provision should prevent this messy situation from impacting the decision.
Third, I have added a paragraph that specifically allows the agent to initiate litigation against the hospital, healthcare provider or family member who fails to promptly implement the agent/decisionmaker’s directives. This is already authorized under the Patient Self Determination Act but it is always a good practice to include this language since this could be the tipping point in having the hospital honor the agent’s decision.
Likewise, a provision should be added that the patient or the patient’s estate will not be responsible for the payment of medical bills for services provided that are inconsistent with the patient’s desires. While this provision may or may not be enforceable, it may cause doctors and family members to think twice when the decision is made. Or a provision may state that any family member will forfeit their inheritance if they contest, interfere with or delay the patient’s expressed desires.
Several other points should be kept in mind when drafting living wills. First, all practitioners should reacquaint themselves with the seminal United States Supreme Court decision in Cruzan v. Director, Missouri Dept of Health, 497 US 261 (1990) that held that there is a constitutionally protected right to refuse any and all health care treatment, to include the provision of nutrition and hydration. A state is permitted to require a surrogate decisionmaker to produce clear and convincing evidence of what the patient’s desires would have been, but it cannot otherwise infringe on that right. Arizona law and the federal Patient Self Determination Act, which largely codified the Cruzan case, requires that all healthcare facilities must follow a living will or other advance medical directive. These authorities should remind practitioners that they should not be constrained by restrictive state laws. This is not a problem in Arizona, where a statutory form is suggested but not required. However, a practitioner can never be sure where the living will may be exercised. Examples of overly restrictive state laws are where a state requires the use of a statutorily-created form, limits the decisionmaking authority to only certain irreversible or terminal conditions or to a certain period of time, requires a doctor’s certification or where the cessation of nutrition and hydration is prohibited. Practitioners should cite to Arizona statutes and indicate that the living will is in compliance with applicable Arizona law.
Another point to consider concerns the termination of the provision of hydration and nutrition. The media in Schiavo repeatedly referred to “starving her to death” and of the pain that would result to Ms Schiavo. This is not so. Patients do not starve to death in these situations. It is the lack of hydration that results in death. Withholding hydration causes death much faster than withholding nutrition. The lack of hydration creates renal (kidney) failure that causes a fairly painless death, usually within days and always within a month of the withholding. It also overlooks that food or fluids can be very distressing to a dying patient by making it harder for the patient to breath and increasing the need for suctioning. It can also increase pressure on tumors, thereby increasing pain. Food and fluids can also induce nausea, diarrhea or swelling.
It should also be kept in mind that most of the justices in Cruzan stated that artificially-administered hydration and nutrition is a medical treatment. It requires consent by the patient or agent and a skilled clinician to implant and remove the feeding tube. There is nothing natural or non-invasive about it.
Encouraging clients to have “the talk”
No written document can take the place of a thorough discussion among family members about end-of-life issues. The silver lining of Schiavo is that, hopefully, more of these discussions have and will take place. Practitioners drafting living wills are simply trying to memorialize that discussion. The objective is to allow the agent/decisionmaker to make the best decision they can with the least amount of guilt. The agent should be able to say “That’s what Dad would have wanted us to do”. If so, the drafting attorney has done an exemplary job.
 42 CFR 418.3
 ARS 14-5101(1)
 Medical Aspects of the Persistent Vegetative State. New England Journal of Medicine, 1994; 330:1499-1506 & 1572-1578
Brett, A. Limitations of Listing Specific Medical Interventions in Advance Directives. Journal of the American Medical Association, 1991; 266(6):825-
 Tulsky, J. Beyond Advance Directives: Importance of Communication Skills at the End of Life. Journal of the American Medical Association, 2005; 294(3): 359-365
Meisel, A, Snyder, L & Quill, T. Seven Legal Barriers to End-of-Life Care: Myths, Realities and Grains of Truth. Journal of the American Medical Association, 2000; 284(19): 2495-2501
 42 USC 1395cc(a)
 ARS 36-3204
 ARS 36-3224