Utah Bar Journal

The collaborators identified the following objectives:

1. Improve the likelihood that an individual’s documented health care preferences will be honored when the individual can no longer make health care decisions;

2. Remove barriers to the creation of written or oral advance directives;

3. Allow individuals to choose among end-of-life care options;

4. Protect individuals’ rights to make health care decisions; and

5. Expand the pool of surrogates available to make routine and extraordinary decisions for adults who lack medical decision-making capacity.

Every aspect of the statutory form and the new law was measured against these objectives. The result is a law that is on the cutting edge of advance health care directive laws in the nation. This article highlights the major changes in the law and discusses the role of an attorney in the advance health care planning process.

Why Change?
Before and after passage of the Advance Health Care Directive Act, attorneys have asked, “Why change?” The short answer is that the current system does not work. The system’s failure has many sources: advances in medical technology that have outpaced the law’s language; a legal system and medical system that each knows too little about how the other operates; a tremendous gap between what individuals think their living wills say and the very limited scope of the language of the statutory forms; and the list goes on.

Under the Personal Choice and Living Will Act, an attorney can quickly and easily review and provide Utah’s living will2 and special power of attorney3 forms to their clients for signature. But the limited amount of thought put into the process is reflected in the limited value of the signed forms when difficult decisions have to be made. If a client thinks that end-of-life planning is complete after the forms are signed, and if that misperception results in failure to communicate with a health care agent or family about end-of-life wishes, chances are that family members will be left guessing about the client’s wishes. Rarely would the living will form be relevant.

The limited value of the form has its roots in the language of the Personal Choice and Living Will Act. The law was state-of-the-art when passed in 1985. At that time, advocates feared that living wills would be used to improperly withdraw care, perhaps even leading to euthanasia, so the scope of application was very narrow. For the statutory living will form to be relevant, two physicians must certify, in writing, that the patient suffers from a “persistent vegetative state” or “terminal condition.”4 While Utah sees more than 13,000 deaths each year, it is hard to find examples of either triggering condition. A persistent vegetative state is very rare; at most, a very small handful of Utah’s deaths each year would follow this diagnosis.

The statutory definition of “terminal” also has a very limited application, which has become even more limited as medical technology has advanced. While the medical literature recognizes many conditions as terminal, the definition is so narrow that a conservative reading of the statute would make it extraordinarily difficult to find a condition to be terminal. Rarely would any patient suffer from a condition for which treatment with life-sustaining procedures would “serve only to postpone the moment of death,” as the statute requires.5 For many patients, the application of all available life-sustaining procedures, such as feeding tubes, respirators, cardiac support devices, and dialysis, could prolong life for hours, days, weeks, months, or even years. Most deaths in Utah occur when a decision to refuse life support is made when the patient would reject the care, not because the statutory definition of terminal is met. But even a change in the statute to broaden the scope of the law would have left two significant problems in place.

The statutory living will form fills in the blanks for the declarant, rather than offering the declarant a choice among end-of-life care options. The form does not allow for an advance directive expressing a preference in favor of life-sustaining procedures; the only choice is to reject life-sustaining care. In the 1970’s and 1980’s, living will laws were drafted in the face of a medical ethic that had difficulty stopping life-sustaining care, whether or not the patient would have wanted care. The current ethic more readily allows the termination of life-sustaining care, but some fear this ethic too readily allows termination of care, particularly for the elderly and disabled. Aging individuals and advocates for the aging and disability communities expressed a desire for an advance directive that allowed the declarant to choose care for the purpose of prolonging life.

The second challenge, which also arose from the absence of choice, was a presumption on the part of some health care providers that the mere existence of a living will meant that the individual wanted very limited or no care. Anecdotes abound: do not resuscitate (DNR) orders improperly placed in a patient’s file without consent after the patient acknowledged that she had a living will; antibiotics withheld from a patient suffering from pneumonia because she had signed a living will, even though antibiotics could have restored her to the condition she was in before the illness. In my experience educating health care providers about living wills, I found that many sincerely thought they knew the contents of the statutory form, but few did. The lack of choice, discussed above, makes it easy for a provider to never lay eyes on the form. Rather than carefully scrutinizing each living will, the provider may simply assume that all living wills express a preference to forego life-sustaining care.

The new Advance Health Care Directive lets individuals choose among options and will force health care providers to consider each patient’s choices, as they are documented in the Advance Health Care Directive.

Adding to the challenges raised by the Personal Choice and Living Will Act is the limited nature of the statutory Health Care Power of Attorney, which authorizes the appointed agent to do only one thing: “to execute a directive on [the declarant’s] behalf under Section 75-2-1105.”6 Outside of nursing facilities, it was, and it remains, very unusual to see a directive under section 75-2-1105, typically called a Medical Treatment Plan. While appointed agents and family surrogates routinely make end-of-life decisions for patients in Utah, such decisions are rarely made in compliance with this statutory scheme. This system’s design was innovative and made sense in theory, but it did not take hold in most corners of the health care community. The new form encourages appointment of an agent and an alternate agent with broad authority to make decisions in any manner that is appropriate.

Highlights of Changes
The statutory Advance Health Care Directive form:

• Combines into one form what were three forms under the Personal Choice and Living Will Act;

• Emphasizes the need to appoint an agent by placing the appointment of the agent first, with the living will portion of the document second;

• Grants to the agent broad decision-making authority within the form, but allows the declarant to modify that authority;

• Allows the declarant to choose whether the agent can disregard the declarant’s documented preferences;

• In plain language, offers choices among real-life options in the living will portion of the document;

• Allows the declarant to choose conditions that must be met before life support is withdrawn; and

• Requires only one disinterested witness to the signing of the document, eliminating the barriers of multiple witnesses or a notarized signature.

In addition to updating the form, SB 75 also made substantial changes to the law. Concerning an individual’s decision-making capacity, the new law:

• Establishes a presumption that all individuals have decision-making capacity;

• Defines capacity to make a health care decision;

• Requires a physician’s finding that an individual lacks capacity to make a health care decision to overcome the presumption of capacity;

• Defines capacity to appoint an agent;

• Recognizes that an individual who lacks health care decision-making capacity may continue to have the capacity to appoint an agent;

• Sets forth factors to consider when determining whether the individual has the capacity to appoint an agent; and

• Emphasizes that an individual’s constitutional right to make health care decisions may not be taken away without due process of law.

To eliminate barriers to the creation and use of advance directives, the law:

• Allows written or oral directives;

• Expands the authority of surrogate decision makers; and

• Eliminates the statutory requirement that a patient be terminally ill or in a persistent vegetative state before an advance directive is effective.

To allow appropriate surrogates to serve without resorting to guardianships, to clarify who can serve as a surrogate decision maker and how decisions should be made, and to protect the individual’s right to choose a surrogate, the law:

• Expands the circle of family members authorized to make end-of-life decisions on behalf of an incapacitated individual as default surrogates;

• Enables a distant relative or other person who has a relationship with an individual who lacks capacity to serve as a default surrogate decision maker when no appointed agent or close family member is available to serve;

• Adopts the substituted judgment standard for decision making, with the best interest standard to be applied only when an individual has always lacked decision-making capacity or when the individual’s past preferences are unknown; and

• Gives the individual broad authority to disqualify an appointed agent or default surrogate, even if the individual has been found by a physician to lack decision-making capacity.

To provide a mechanism for translating directives into physician orders, the law

• Recognizes the Physician Order for Life Sustaining Treatment (POLST) form;

• Clarifies the role of the form as a form that shall be honored by emergency medical service personnel;

• Allows a POLST form to be issued for a minor child after specific requirements are met.

To allow for the effective administration of the medical system and the ability of health care providers to act pursuant to a patient’s wishes, the law:

• Provides broad access to courts to determine an individual’s decision-making capacity or to adjudicate disputes among surrogates or between surrogates and health care providers;

• Confirms the status of surrogate decision makers as “personal representatives” for the purposes of HIPAA;

• Protects health care providers who comply with directives from civil or criminal liability; and

• Allows a health care provider to withdraw from caring for a patient for reasons of conscience.

Finally, to protect against abuse, the law establishes criminal penalties for falsifying, forging, or destroying a directive.

The Attorney’s Role in the Advance Care Planning Process
In Utah, the statutory forms under the Personal Choice and Living Will Act and the new Advance Health Care Directive Act were drafted as documents that could be completed and signed without legal help. Notwithstanding the drafters’ intent, estate planning attorneys in Utah and throughout the nation have offered living will and special power of attorney forms for health care as part of the estate planning process. Attorneys have provided a service to the community by integrating these documents into the estate planning process; getting the forms signed is a major barrier to more widespread use of advance directives. Attorneys have also used these forms as part of larger plans to protect clients’ rights in anticipation of future incapacity.

Attorneys who wish to continue to address these issues with their clients can no longer merely introduce the client to the statutory forms and assure that the forms are signed in compliance with the statute. The choices documented in the Advance Health Care Directive should be the product of a potentially complicated advance care planning process. This process may require that clients obtain more information from health care providers or that they work through some difficult choices in consultation with an agent or family members. With healthy clients, the process may not take much more time than it did with the old forms. The process becomes far more complicated, however, when a client is facing a life-threatening or life-limiting illness, such as cancer, chronic obstructive pulmonary disease (COPD), or congestive heart failure (CHF). An attorney who fails to understand how the choices made on the form will affect the client’s health care in the future may fail to protect the client’s interests. An attorney who plans to complete these documents with clients should therefore seek educational opportunities to learn how to facilitate an advance health care planning discussion. An attorney may also wish to educate paralegals about this process, enabling the paralegal to conduct an initial assessment and to help the client to formulate questions for health care providers, for example.

An attorney who does not wish to become enmeshed in the health care planning process can appropriately choose to leave the process to others. Resource packets containing statutory forms and model instructions to be issued by the Utah Department of Health will be widely available. In addition, trained facilitators will be available in health care facilities and in the community. Deferring to other trained facilitators is a good option for attorneys. In contrast, it would be inappropriate for an attorney to pretend that nothing but the form has changed, get no additional education, and continue to facilitate the form signing, without developing an understanding of how the completed form will affect clients’ interests.

Another way to put a client’s interest at risk is to disregard the statutory form and draft a customized directive. An attorney may, with all good intention, develop an extensive, carefully drafted advance directive for clients that covers all scenarios and carefully outlines the client’s wishes. As a practical matter, however, such a document may wreak havoc if it arrives at the hospital with a client who is unable to speak for himself. If the form is not familiar, the health care provider is likely to seek input from a surrogate decision maker, if available, without regard to the directive. If no surrogate is available, the provider may then seek an opinion from risk management, legal counsel, or an ethics committee about what care should be provided in light of the directive. It would be an unusual physician who would read, interpret, and implement a directive without consulting others, particularly in the hospital setting where many of these decisions are made. Meanwhile, the client could remain in medical decision-making limbo for days, possibly subjected to interventions he has tried to explicitly reject, while the document is interpreted by various entities. The use of a statutory form to document the client’s wishes is far more likely to protect the client’s interest.

Advance Health Care Planning
The completion of the Advance Health Care Directive should be the last step in the advance health care planning process. An attorney who chooses to serve in this role needs to:

1. Understand the client’s current medical conditions;
2. Assess the client’s understanding of conditions, prognosis, and treatment options;
3. Identify goals of care;
4. When more information is needed to formulate a plan, help the client develop appropriate and targeted questions for the health care provider;
5. Facilitate a discussion of options without imposing his or her individual opinions, preferences, or beliefs on the client; and
6. Help the client to link goals of care with the choices on the form to document the plan.

Only after completing all relevant steps should the client record choices and sign the directive before a witness.

To be effective, a facilitator must also have knowledge of:

1. How directives are translated into instructions for care in physicians’ orders;

2. Basic facts about end-of-life care;

3. Common misperceptions and myths about end-of-life care;

4. Local options for end-of-life care; and

5. How changing circumstances affect medical decision making.

For an example of a question an attorney may be asked to navigate, consider tube feeding. Most healthy individuals would agree to tube feeding following a serious illness or injury from which they are likely to recover. In these circumstances, the goal of care is to survive the crisis and return to good health. Some individuals suffering from life-limiting neurological illnesses such as multiple sclerosis or ALS (Lou Gehrig’s disease) will lose the ability to swallow; some of these individuals choose a feeding tube. The goal of care is to extend life, even though tube feeding may be necessary for the duration of life. In contrast, many individuals, including some of those who would accept tube feeding in the two previous scenarios, would reject the use of tube feeding if the need arose due to advanced dementia. In this case, care is rejected because the goals of care are to promote comfort, even if doing so has the potential of shortening life, and to avoid interventions that may increase anxiety and discomfort without substantial chance of improving function or quality of life. An attorney who chooses to facilitate advance health care planning needs the skill and knowledge to navigate this type of discussion.

At the same time, an attorney needs to know when decisions are outside the scope of the practice of law. For example, if a client suffering from multiple sclerosis came to an attorney seeking advice on whether or not to agree to a feeding tube, the attorney should refer the client back to a health care provider for medical advice. An attorney who provided advice on whether or not to accept a feeding tube would be vulnerable to an accusation that he or she is practicing medicine without a license. But an attorney could properly help the same client to complete a directive that documents a plan developed with the physician, which instructs that a feeding tube may be placed but should be removed if the client is near death and can no longer communicate with family and friends.

The Committee on Law and Aging of the Utah State Bar is in the process of planning a CLE session on how to facilitate advance health care planning discussions that will be offered on September 27th and 28th of 2007. The Utah Commission on Aging will also offer facilitator training shortly after the first of the year. Additional materials, including a sample of a formatted statutory form, are available at www.coa.utah.gov.

Utah now has the opportunity to lead the nation in demonstrating how advance health care planning can improve the way people die. To effectively implement the new law, attorneys must develop new skills and obtain relevant knowledge to enable them to help their clients to develop and document health care plans.

1. Utah Code Ann. §75-2-1101, et seq.

2. Directive to Physicians and Providers of Medical Services, Utah Code Ann. §75-2-1104.

3. Special Power of Attorney, Utah Code Ann. §75-2-1106.

4. See Utah Code Ann. §75-2-1104.

5. Id.

6. Utah Code Ann. §75-2-1106.