Utah Bar Journal

The Terri Schiavo case took place in Florida, but was headline news in Utah for months. The dispute - whether to remove a feeding tube from a Florida woman who had been in a persistent vegetative state for 13 years - forced Utahns to think about their end-of-life preferences. A KSL/Deseret Morning News poll found that, among 413 Utahns surveyed, "51 percent believe Schiavo should not have a feeding tube, [and] 69 percent said if they were in Schiavo's position they would not want a feeding tube inserted . . . ." Rick Klein, Schiavo Ruling is Pending, Deseret Morning News, March 22, 2005.

Neither the Weitzel case nor the Schiavo case changed Utah law. Utah's Personal Choice and Living Will Act ("the Act"), which gives legal authority to advance care planning documents in the state, was enacted in 1985, updated in 1993, and amended to address emergency medical services in 1999. Utah Code ¤¤75-2-1101 to 1119. Similarly, no changes have been made to Utah law that would affect the opioid-prescribing practices of physicians. The two cases have, however, forced Utahns to consider end-of-life decisionmaking and pain management.

In the intent statement of the Act, the legislature recognized "the dignity and privacy which all individuals are entitled to expect" and "the right to make binding written directives." This seems simple: under state law, Utahns can expect "dignity and privacy" and make binding written directives. The reality, however, is far more complex than the intent statement suggests, as cases like Weitzel and Schiavo reveal.

Advance Care Planning
End-of-life decisionmaking and advance care planning should be grounded in a process that evaluates the individual's wishes and weighs those wishes against medical interventions. The first step in the process is to identify the goals of care.

What does the individual want from medical care? The answer will be different from individual to individual, depending on factors such as stage in life, fears, and individual and social values. Goals of care are contextual and often change over time. Often, people accept more care than they initially thought they would want as their condition deteriorates. Setting goals of care involves an exploration of difficult subjects: death, disability, painful and difficult treatments, and an individual's place in society and family.

Consider an 80-year old who wants to see her first great-grandchild born. The baby is due in 5 months. The woman suffers from congestive heart failure (CHF). She has been hospitalized twice, and was successfully treated both times with diuretics and oxygen. During the previous hospital admissions, she requested a "do not resuscitate/do not attempt resuscitation" (DNR/DNAR) order and refused to be put on a ventilator because she did not want to risk ending up ventilator-dependent or, in her words, "on machines." One goal was to avoid aggressive care; the other competing goal was to be alive for the birth of her great-grandchild.

After identifying goals of care, the individual needs an understanding of prognosis. What are the relevant medical conditions, and what are foreseeable crises that the individual may face? For a young healthy person, the issue that is most likely to strike unexpectedly is a trauma or illness that damages the brain resulting in a condition similar to that of Terry Schiavo. For someone with a serious life-threatening or life-limiting condition, the physician can discuss the crises that may arise that would render the individual unable to make or communicate medical decisions.

Our hypothetical CHF patient knows that she will probably experience periodic crises that are likely to require hospitalization. Her physician has explained that she may not be able to direct her own care during these crises. Some of the decisions her loved ones might have to make for her are whether to put her on a ventilator, whether to use diuretics, and whether to consent to blood transfusions. The physician told her that it is likely that one of these crises will cause her death, but she cannot predict when that will happen.

Finally, before accepting or rejecting a medical intervention, an individual must understand the benefits and burdens of the intervention. In the case of the CHF patient, the physician explained that the use of a respirator and other interventions will increase the chance that she will survive a crisis, though probably at a diminished level of function. The physician also said that even with aggressive medical care, the next crisis could be fatal. She explains that the down side of agreeing to the use of a ventilator is that, once a respirator is started, it is sometimes hard for families and physicians to agree to withdrawal, even when it is clear that the patient will never recover. In other words, her family could find it difficult to honor her wish that she not be kept alive on machines.

Only after this process has been completed is it time to document wishes, whether on a Living Will, Medical Treatment Plan, or other document. It is unfortunately unusual, however, for an individual to be walked through the process outlined above as effectively as our hypothetical patient. Rather, individuals are handed a "Living Will Packet" by an admissions clerk or are asked to sign the statutory Living Will form by their attorney when they execute their estate planning documents.

To understand why the decisionmaking process sometimes does not take place, it is important to review the Personal Choice and Living Will Act.

Personal Choice and Living Will Act
The Personal Choice and Living Will Act is the Utah statute that creates legally-binding advance care planning documents for Utahns. Utah Code ¤¤75-2-1101 to 1119. The Act creates four documents: a Living Will ("Directive to Physicians and Providers of Medical Services," 2-1104); a Medical Treatment Plan ("Directive for Medical Services After Injury or Illness is Incurred," 2-1105); a Special Power of Attorney (2-1106); and an Emergency Medical Services Do Not Resuscitate form. The first three of these documents are discussed below. The last is rarely used and has largely been supplanted by the Physician Order for Life Sustaining Treatment ("POLST") form, which is discussed below.

Living Will
Utah law allows competent individuals over the age of 18 to complete and sign a Living Will, or as it is called in Utah, a "Directive to Physicians and Providers of Medical Services." Utah Code 2-1104. The law requires the use of the statutory form or a form that is "substantially similar." Id. The statutory form states that the individual desires that "life not be artificially prolonged by life-sustaining procedures." Id.

An individual who signs Utah's form directs medical providers to withhold or withdraw life-sustaining procedures and allow the individual's death to "occur naturally:"

(a) if the individual has an injury, disease, or illness, that is certified to be a terminal condition or persistent vegetative state both

(i) in writing and

(ii) by two physicians who have personally examined the patient, and

(b) in the opinion of [the] physicians, the application of the life-sustaining procedures would serve only to unnaturally prolong

(i) the moment of my death and

(ii) the dying process.

Id.

The statute defines "life-sustaining procedures" as "any medical procedure or intervention which would in the judgment of the attending physician serve only to prolong the dying process," including "artificial nutrition and hydration unless the declarant elects in the declaration to exclude artificially administered nutrition and hydration." Utah Code 2-1103. The definition of life-sustaining procedure "does not include the administration of medication or the performance of any medical procedure which is intended to provide comfort care or to alleviate pain." Id. The statute does not define "unnaturally."

The language in Utah law that addresses Living Wills is very different from the language and approach described in the Advance Care Planning section, above. Whether treatment will be withheld or withdrawn turns on a physician's interpretation of what it means to "unnaturally prolong the moment of . . . death" or "to unnaturally prolong the dying process," not on an assessment of whether the patient's goals of care will be furthered or hampered by the treatment. The language in Utah's law would not have added clarity to a case like Schiavo.

If individuals believe that they have done all they need to do to get their affairs in order by signing Utah's statutory forms, they may forego the more complicated - but necessary - process of advance healthcare planning outlined above. It is important for attorneys to realize that signing Utah's statutory form will do little, perhaps nothing, toward assuring that their clients' end-of-life care wishes will be honored.

While attorneys are not obligated to get the training necessary to engage in the advance planning process with clients, they should understand the process and reinforce the need for the client to seek advice on how to plan for the end of life. The Living Will is simply not enough. The Toolkit for Healthcare Advance Planning, developed by the ABA Commission on Law and Aging, and reprinted with Utah-specific content at www.carefordying.org, is a document that can help clients to begin an end-of-life planning process.

Medical Treatment Plan
A second advance directive established in Utah law is the "Directive for Medical Services After Injury or Illness is Incurred." Utah Code 2-1105. This document is commonly referred to as the "Medical Treatment Plan." While this document is flexible and has much potential, it is rarely used outside of nursing facilities, and will therefore not be discussed in further detail herein.

Although the Medical Treatment Plan is not often used, 2-1105 establishes two important elements of Utah end-of-life law. First, it allows an attorney-in-fact appointed under Utah law for the purpose of making end-of-life decisions to override a Living Will by completing a Medical Treatment Plan with different, conflicting, or contradictory directives. This will be discussed in greater detail below with the discussion of the Special Power of Attorney. Second it establishes a prioritized list of proxy decisionmakers who can sign the directive on behalf of an individual who is not competent to make medical decisions. This list can be very helpful to healthcare providers and family members, struggling with the question, "Who decides?" when a disagreement arises.

Special Power of Attorney
The single most important advance care planning document in Utah is the Special Power of Attorney, established in 2-1106. In this document, an individual can appoint another individual to make end-of-life decisions when the individual is incapacitated. Physicians prefer this document to the Living Will because they want an individual with whom they can communicate who can provide the context discussed above that is so central to making the end-of-life choices the patient would have made. The Living Will often does not answer the physician's questions about goals of care or patient preference.

The law's prioritized list of proxy decisionmakers in 2-1105 reflects the importance that Utah law places on the individual's choice of a proxy decisionmaker: an attorney-in-fact named under 2-1106 has priority over a court-appointed guardian to make medical decisions for an incapacitated individual.

Two elements of 2-1106 are counterintuitive to many individuals and are often misunderstood.

Many individuals - attorneys included - think that the Living Will is etched in stone and cannot be reversed, changed, or revoked, except by the individual to whom it applies. But 2-1106 allows an attorney-in-fact appointed under 2-1106 to give directions that differ from or contradict those in the Living Will. This recognizes a fact that end-of-life decisionmaking is contextual and changes with the patient's preferences and circumstances. Attorneys should explain this provision to their clients.

A second misunderstood provision is the one that appoints an attorney-in-fact:

with lawful authority to execute a directive on my behalf under Section 75-2-1105, governing the care and treatment to be administered to or withheld from me at any time after I incur an injury, disease, or illness which renders me unable to give current directions to attending physicians and other providers of medical services.

Utah Code 2-1106. In other words, the statutory form gives the attorney-in-fact the authority to complete a Medical Treatment Plan. Nothing more. It does not give the attorney-in-fact the authority to admit the principal to a nursing home or hospital, or to give oral or written consent to treatments outside the context of the Medical Treatment Plan.

The reality of medical practice in Utah, however, is that most providers use the statutory form as a blanket power of attorney for healthcare that authorizes the attorney-in-fact to make any and all medical decisions for the principal. There is a significant disconnect between what the document says and how it is used. This suggests that there is either a need to update the statute to reconcile practice with the legal form, or the need for education of providers who are interpreting the form more broadly than the narrow language of the document would justify.

Many questions - how an attorney-in-fact should make medical decisions for another person, the principal's obligation to inform a designated attorney-in-fact of her wishes, and how to reconcile conflicts among family members or between proxies and healthcare providers - are not addressed in this article. While they are important, an exploration of the issues could fill a book.

POLST Form
In 2002, the Utah Department of Health enacted a rule creating a Physician Order for Life-Sustaining Treatment (POLST) form. Utah Administrative Code, R432-031. The purpose of the rule is to "provide[ ] for the orderly communication and transfer of patient preferences for life-sustaining treatment when a patient transfers from one licensed health care facility to another." A separate rule, R426-100-6, allows emergency medical personnel to honor a patient's wishes for treatment when the wishes are documented on the POLST form.

The POLST form has some benefits over the Living Will form. For example, it asks whether the patient wants specific interventions such as resuscitation, antibiotics, and artificially administered fluids and foods. It is a very good way to document the results of an advance care planning process.

But the POLST form is not an advance directive. As a Department of Health rule, it lacks the force of law that the Living Will, Medical Treatment Plan, and Special Power of Attorney forms carry. It is also meant to document current preferences, not hypothetical future ones. It asks: "What do you want done today?" rather than "What would you want done in the event that the following criteria are met?"

The POLST form is most effective when it is used to document advance planning decisions made by individuals with serious or life-threatening conditions. It is less relevant to those who are healthy with no imminent risk of decline. Furthermore, the POLST form cannot be completed without access to good information about the individual's condition, prognosis, and benefits and burdens of treatments being accepted or rejected. It should not simply be handed to a patient or family to be completed without guidance, but often it is. Attorneys should encourage clients to go through the form with a healthcare professional and to get questions answered before signing the form.

Utah Post-Schiavo
During the final days of Terry Schiavo's life, and in the aftermath of her death, local papers published articles titled "A Living Will Would Have Prevented Schiavo Tragedy," (Deseret Morning News, March 25, 2005), "Schiavo Predicament has Utahns Planning Early," (Salt Lake Tribune, April 1, 2005), "Baby Boomers Flock to Lawyers for Financial, Health-Care Planning," (Deseret Morning News, April 17, 2005), and "Make Choices Before a Crisis," (Deseret Morning News, April 8, 2005) to name only a few. But would Utah's Personal Choice and Living Will Act have prevented a case like Schiavo?

The key role and need to interpret the phrase, "unnaturally prolong the dying process," could undermine the law's ability to avoid disputes in a case like Schiavo. The proponents of leaving the feeding tube in place in the Schiavo case would argue that there was no dying process going on. In their view, she was living, and had been living for 13 years. The proponents of removing the feeding tube felt that the dying process had begun 13 years before, when a tragic event left her severely brain damaged. Even if Terry Schiavo had completed Utah's Living Will form, the dispute may have raged.

In addition, the Schiavo case is very unusual. Few people ever receive the diagnosis of "persistent vegetative state." Rather, most deaths in Utah occur after a decision to withhold or withdraw life-sustaining treatment that comes after a diagnosis with a serious life-threatening or life-limiting illness and a period of decline. Most deaths are therefore the predictable result of degenerative conditions such as cardiovascular disease, pulmonary disease, or cancer.

Most decisions to withdraw or withhold treatment do not meet the criteria set forth in Utah's statute, in contrast to the Schiavo case. Returning to our hypothetical CHF patient, a month after her grandchild was born, she had another crisis and was hospitalized. Although she was pleased to meet her great-grandson, she was tired and frustrated that she was unable to interact with the baby, due to her frail state of health. She told her daughter, "I'm done. When my time comes, let me go." When she was hospitalized, the daughter refused to consent to use of a ventilator, and her mother died. No doctor ever certified that her condition was terminal. The physician admits that the use of medical interventions would have had a substantial chance of returning her patient to her home, until the next crisis hit.

Nothing is inherently wrong with this very common scenario. The physician knows that her patient's wishes were honored. The daughter feels secure that she did what her mother wanted. Rarely would this trigger a dispute like the one that led to the Schiavo case. But what happened is not supported by Utah law and did not conform to the requirements of the Personal Choice and Living Will Act.

This disconnect will be examined by the Utah Commission on Aging. In 2005, Utah's legislature, in recognition that issues such as these will challenge our system as the baby boom generation ages, created the Commission look at how state laws support Utah's aging population. The Commission will work to assure that the Act encourages advance care planning, allows individual wishes to be honored, and remains relevant to how people die in Utah.

Utah Post-Weitzel
Utah laws concerning pain management have not changed since the Weitzel case, and the case itself had no precedential effect on Utah pain management law. The question of whether the case changed physician behavior is a different one. At the time of the trial, it was feared that the legal action against Weitzel would discourage physicians from using opioids (morphine, oxycodone, hydrocodone, etc.) to manage pain.

To prepare for this article, I asked a number of specialists in pain management if the quality of pain management care has changed since the Weitzel trials. Physicians on the Wasatch Front responded that things are somewhat better than they were when Weitzel was first charged. These physicians attribute the positive change to a number of factors.

Some cited the effectiveness of aggressive campaigns to educate professionals and the public about appropriate management of pain. They also cited the Department of Professional Licensing's efforts to reassure physicians that appropriate pain management will be supported, not punished. In addition, the physicians noted that the Utah Medical Association has passed resolutions supporting appropriate management of pain. All of the physicians questioned, however, emphasized that Utah does not have enough physicians who are knowledgeable about the treatment of pain and end-of-life symptom management.

A rural hospice administrator asked for comment had a different experience from the Wasatch Front physicians. She noted that physicians in her small community, where no educational efforts on pain management were directed, still expressed fear of prosecution. She perceived that physicians are less likely now to prescribe opioids for severe end-of-life pain than they were before the Weitzel case.

Conclusion
The Weitzel and Schiavo cases have raised awareness of pain management and end-of-life care issues in Utah. A review of the law in light of these cases, however, points out that law could better support advance care planning and could be updated in a manner that makes it more relevant to actual medical practice. The Utah Commission on Aging will consider the best way to update the statute. While the Commission addresses policy issues, attorneys who prepare advance directives for clients should educate themselves about the realities of end-of-life decisionmaking, and should encourage their clients to engage in an advance care planning process.

Though challenges remain, it appears that increased awareness has improved the opportunities for Utahns to engage in an advance care planning process and has increased the chance that Utahns will receive appropriate management of pain.