HEALTH CARE DECISION-MAKING FOR INCOMPETENT PATIENTS

Making our own choices regarding the medical treatment we would want for ourselves, and the kind we would decline, is an important right that we want to exercise throughout our lives. Our legal system in turn considers this right of self-determination to be so basic to our idea of individual liberty that it seeks to honor its exercise even with patients who are no longer of sound mind.

But how can a person of unsound mind make meaningful treatment choices? Over the years the law has sought to answer that question by steadily expanding the ways in which an incompetent patient’s treatment choices can be articulated and given effect.

This article will review how this development has occurred in Pennsylvania law, and describe the current three-pronged approach to giving expression to the decisional rights of incompetent patients.

CONTENTS

■ Development of the Law Regarding Health Care Decision-Making for Incompetent Patients

■ Why Have a Living Will?

■ What’s a Durable Health Care Power of Attorney?

■ Who Can Act as a Health Care Representative?

■ How Should Agents and Representatives Make Decisions?

 

 

■ Development of the Law Regarding Health Care Decision-Making for Incompetent Patients

The health care decision-making laws that are currently available for use in Pennsylvania represent the culmination of efforts undertaken by the legislature, bench and bar, and the medical community to address the concerns of incompetent patients and their caregivers.  It is important to know some of the history of this process, in order to better understand the scope and meaning of the statutory language and the forms that are now in use.

Fundamental Right of Self-Determination

From both a legal and ethical perspective, any discussion of the right of patients and their surrogates to consent to or refuse life-sustaining treatment must start by recognizing the fundamental right of every individual, whether competent or incompetent, to make their own medical treatment choices, including the right to refuse such treatment.

This fundamental right of self-determination in health care matters has been long recognized at common law, and has been found to exist as part of the right of privacy found within the constitutional guarantee of individual liberty.

Informed Consent

From this basic right to be free from unwanted bodily invasion developed the doctrine of informed consent, which states that absent an emergency situation medical treatment may not be undertaken without the patient’s informed consent.

The right of self-determination can be exercised at any time, so that the individual can refuse medical treatment initially or can withdraw consent to such treatment after it has begun.

Right of Self-Determination Not Affected by Incapacity

The right of self-determination is considered to be so fundamental that it does not end even if the individual becomes incapacitated.

How Is the Right of Self-Determination Exercised?

Competent Individual. While patients are still competent, they are entitled to make their own treatment decisions, and can communicate these orally to their caregivers.  No document, such as a living will, is necessary for the effective exercise of this right. The client will have the right to make his or her own decisions regardless of anyone else’s opinions or feelings.

Incompetent Individual. If the individual is found to be incompetent, Pennsylvania courts have allowed for the meaningful exercise of his or her right of self-determination by sanctioning a three-stage process that looks:

✔ First, to evidence of the individual’s expressions of intent, prior to incapacity, regarding health care treatment choices, including the withholding or withdrawal of life-sustaining measures.

✔ If there is insufficient evidence of such intent then next, under the standard of substituted judgment, to whatever evidence that is available of the individual’s instructions, beliefs, preferences, and values that reflect his or her treatment choices (See section H below).

✔ Thirdly, if there is not enough evidence to use even the substituted judgment standard, then to what the surrogate determines to be in the individual’s best interests.

 

Substituted Judgment

The substituted judgment principle is intended to ensure that the  surrogate decision-maker effectuates as much as possible the decision that the incompetent individual would have made if he or she were still competent, rather than making such decisions arbitrarily or based on the surrogate’s own attitudes and beliefs.

In exercising substituted judgment, the surrogate is to consider the individual’s personal value system, any prior statements about or reactions to medical issues, including end-of-life issues, and all the aspects of the individual’s personality that the surrogate is familiar with, to arrive at what course of medical treatment the individual would have chosen.

In the leading case of In re Fiori (1996) the Pennsylvania Supreme Court upheld substituted judgment as the proper standard to use in cases where an incompetent individual has not left instructions as to the maintenance of life-sustaining treatment. The Court recognized that the only practical way to prevent the violation of the incapacitated individual’s right to refuse medical treatment is to allow a substitute decision-maker to determine what measures the individual would have desired.

For the substituted judgment standard to be used effectively, there must be sufficient credible evidence available to the surrogate concerning the individual’s expressions of directions or preferences regarding the types of medical procedures or health-care treatment that he would or would not refuse in certain situations.

Best Interests Standard

If there is insufficient information regarding the individual’s expressed directions or preferences, the surrogate may then employ the best interests standard, i.e., choosing the proposed treatment or medical procedure that is in the best interests of the individual.

The Pennsylvania Supreme Court in In re Fiori defined the best interests standard by citing a 1983 President’s Commission Report that the analysis of the individual’s “best interests” is an objective standard that considers the individual’s relief from suffering, the preservation or restoration of functioning, and the quality and extent of sustained life.

The Impact of Cruzan

The constitutional issues underlying the right of the individual, even if incompetent, to refuse treatment reached the United States Supreme Court in Cruzan v. Director, Missouri Department of Health (1990).  As to competent individuals, the Supreme Court recognized their constitutional liberty to be free of unwanted medical treatment. However, the court left to the states to develop appropriate procedures for safeguarding this same liberty interest on behalf of incompetent patients.

The Cruzan decision proved to be a watershed event, in that its effect was to encourage states to enact legislation that would allow individuals to exercise their right to refuse medical treatment in the event they would be later unable to communicate such intentions directly, and to appoint surrogates to ensure that their directives would be carried out. Today, all the states have some form of statutory framework allowing individuals to plan for their medical treatment in the event they later become incompetent.

Statutory Solutions

The three statutory solutions that have emerged from states’ efforts to protect the rights of incompetent individuals are:

✔  Living Will laws that allow individuals to exercise their right of self-determination by specifying in writing their wishes about the use of artificial life-sustaining treatment in the event they become incompetent to make decisions.

✔  Health care durable power of attorney statutes that allow individuals to appoint another person to make decisions about health care matters for them if they become incompetent.

✔ Surrogate/family decision-making laws that authorize certain family members or other persons to make decisions on behalf of an incompetent individual who has not executed a living will or health care power of attorney.

 

Pennsylvania’s Solution to Health-Care Decision Making for Incompetent Patients

Since the enactment of Act 169 of 2006, codified at 20 Pa. Cons. Stat. §§ 5421 – 5488, Pennsylvanians have available all three approaches to health care (including end-of-life) decision making that were sanctioned by the United States Supreme Court in Cruzan.  Act 169 includes the following specific subchapters:

✔  Living Will Act that authorizes advance written instructions regarding life-sustaining treatment.

✔  Health Care Agents and Representatives Act that provides for:

Health Care Agents to be appointed by a principal and empowered to exercise substituted judgment and apply the best interests standards on behalf of the principal, which could include directing that life-sustaining treatment be withheld or withdrawn.

Health Care Representatives who can step forward to act when no agent was appointed by the principal, or if one was appointed is unwilling or unable to serve. The Health Care Representative may also exercise substituted judgment and use the best interests standards on behalf of the individual.

Act 169 Not Exclusive

Act 169 explicitly states that nothing in it is meant to affect or supersede the holdings of the Pennsylvania Supreme Court in In re Fiori, which is even cited directly in the statute.  As a result of this non-exclusive approach, the underlying principles of self-determination, substituted judgment, and best interests standard remain important concepts in the drafting of advance directives and health care powers, as well as in any analysis of the meaning of their terms.
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■ WHY HAVE A LIVING WILL?

Purpose of the Living Will

As defined in Pennsylvania’s Living Will Act, the purpose of a living will is to allow adult individuals to exercise their right of self-determination by expressing their wishes and instructions for the withholding or withdrawal of life-sustaining medical treatment if they are determined to be incompetent and have either an end-stage medical condition or are permanently unconscious.

 Who Is Eligible to Sign a Living Will?

A living will can be executed by an individual of sound mind who is:

18 years of age or older

✔ has graduated from high school

✔ has married

✔ is an emancipated minor.

What is “Of Sound Mind”?

The term is not defined in the statute, but at common law being “of sound mind” means  having the capacity needed to enter into legal transactions, such as a commercial contract or lease.

A living will must be set forth in a writing that is dated and signed

By an individual by his or her signature or mark, or

✔ By a third party on behalf of and at the direction of the individual if he or she is unable to sign.

✔ Witnessed by two individuals, each of whom is 18 years of age or older.

 

Other Documentary Requirements:

✔ A health care provider or its agent may not sign a living will on behalf of a principal, if the health care provider or agent is also providing health care services to the principal.

✔ A third party who signs a living will on behalf and at the direction of an individual may not also act as a witness to the living will.

Notarization of the individual’s and/or witnesses’ signatures is not required, but is still desirable in the event that the living will must be used in a different state that has such a requirement.

 

Optional Provisions to Include in a Living Will

Define the Scope of Life-Sustaining Treatment

The statute provides numerous definitions of terms that are used in the Living Will Act, as well as in other subchapters. Among the important terms is “life-sustaining treatment,” since it is typically “life-sustaining treatment” that the living will directs be withheld or withdrawn. “Life-sustaining treatment” is defined as “Any medical procedure or intervention that, when administered to a patient or principal who has an end-stage medical condition or is permanently unconscious, will serve only to prolong the process of dying or maintain the individual in a state of permanent unconsciousness.”

State Your Intentions Regarding Artificial or Invasive Forms of Nutrition and Hydration

The statute adds that the term “life-sustaining treatment” will cover nutrition and hydration administered intravenously or by gastric tube or any other artificial or invasive means only if the advance health care directive or order so specifically provides.

NOTE: As a result of this distinction and the solution expressly offered by the statute, the living will should specifically declare whether or not the individual wants artificial or invasive forms of nutrition and hydration to be treated the same as other types of life-sustaining treatment, or if they should be withheld or withdrawn only under special conditions.

Specify whether advanced stage dementia or Alzheimer’s disease should be a condition that triggers the living will

The statute uses “end-stage medical condition” and “permanently unconscious” as the conditions that will trigger the living will.

“End-stage medical condition” is defined as an incurable and irreversible medical condition in an advanced state caused by injury, disease or physical illness that will, in the opinion of the attending physician to a reasonable degree of medical certainty, result in death, despite the introduction or continuation of medical treatment.

The statute further provides that the term “end-stage medical condition,” if used in an advance directive without further description, will exclude advanced stage dementia or Alzheimer’s disease as conditions triggering the living will.

If the individual wants a diagnosis of advanced-stage dementia or Alzheimer’s disease, or any other severe and incurable medical condition, to trigger his or her living will, he or she must specifically express that intention in the living will to avoid the limitations of the statute.

State the specific treatment choices that you would want withdrawn or withheld

Examples of such treatment choices are:

✔Cardiopulmonary resuscitation (CPR)

✔ “Chemical code”

✔ Ventilator support

✔ Continuous positive airway pressure (CPAP) and bilevel positive airway pressure (BiPAP)

✔ Dialysis

✔ Total parenteral nutrition (TPN)

✔ Intravenous (IV) fluids

✔ Enteral tube placement

✔ Surgery

✔ Chemotherapy

✔ Radiation treatment

✔ Transfusions with blood and blood products, and antibiotics.

 

When Does a Living Will Become Effective?

A living will takes effect only if and when:

✔ A copy has been provided to the attending physician and

✔ The attending physician has determined the individual to be incompetent and have an end-stage medical condition or be permanently unconscious.

 

Compliance with the Living Will

When a living will becomes operative, the attending physician and other health care providers must act in accordance with its provisions, or comply with the transfer provisions of the Living Wills Act if they cannot in good conscience comply with the living will.

 

Revocation of a Living Will

The Living Will Act recognizes the right of individuals to revoke their living will at any time and in any manner, regardless of their mental or physical condition at the time.

While seemingly illogical, the legislative choice to allow even incompetent individuals to revoke a living will is based on the underlying right of self-determination, and a desire to avoid questions of competency as a condition of recognizing the revocation.

A revocation is effective upon communication to the attending physician or other health care provider by the individual or a witness to the revocation.

Practical Effect of Revocation. Under other provisions of Chapter 54 that grant decision-making authority to a health care representative, the practical effect of an incompetent individual revoking a living will, in the absence of any contrary direction, is that a family member will then be authorized to step forward and make decisions on behalf of the individual as health care representative.
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■ WHAT’S A HEALTH CARE POWER OF ATTORNEY?

Purpose of Health Care Power of Attorney

The purpose of a health care power of attorney is to both:

✔ Appoint one or more health care agents, and

✔ Authorize the health care agents to make health care decisions on the principal’s behalf.

Incompetency Is Not Necessarily a Pre-Condition for Effectiveness of Health Care Power of Attorney

Unlike a living will, which by definition cannot be effective unless and until the individual is found to be incompetent, the principal can elect to make the health care power of attorney effective immediately upon its execution.

An intent that the health care power be effective prior to incompetency must be expressly stated in the document.  Otherwise, a health care power of attorney will only become operative when a copy is provided to the attending physician and the attending physician determines that the principal is incompetent.

While there are good reasons not to make the document a “springing” power that conditions the agent’s authority upon a finding of incompetency, in practice a physician or other health care provider will be unlikely to obey the directions of an agent at a time when the principal is competent to make their own health care treatment decisions.

Appointment of Health Care Agent

Naming the agent or agents whom the principal wants to act on his or her  behalf, and providing such agents with all the authority they will need to perform their duty, is an important goal of any health care power of attorney. Thus, the provisions dealing with agents should receive the drafter’s special attention. As to the eligibility to serve as an agent:

✔ Only individuals can be appointed as a health care agent.

Disqualified Persons. Unless related to the principal by blood, marriage or adoption, a health care agent may not be the principal’s attending physician or other health care provider, or an owner, operator or employee of a health care provider in which the principal is receiving care.

One Agent or Multiple Agents?

Does the principal prefer more than one person to act as health care agent? If so, the consequences flowing from that choice should be spelled out.

If two agents are named –

✔ Is their unanimous consent required?

✔ Can either one can act independently of the other?

If three or more agents are named –

✔ Does majority vote rule?

✔ Is their unanimous consent required?   

Be aware of the default result. Under the Pennsylvania statute, multiple health care agents must act jointly unless the health care power of attorney expressly provides otherwise.

HIPAA Authorization

It is essential that a HIPAA authorization be included in the document so that the agent can receive all health care information necessary to carry out his or her duties.

 

Optional Provisions for the Health Care Power of Attorney

✔ Nominate a guardian of the person of the principal, if such appointment becomes necessary.

✔ Request that the health care agent consult with the principal’s relatives, clergyman, or physician if the agent  is uncertain as to the principal’s wishes or what would be in his or her best interests.

✔  Authorize your agent to discuss with the physician or other health care professional responsible for your care, if you are in a terminal condition, the level and types of medical treatment that you would want to receive or would choose to decline at such time, and to sign a Pennsylvania Orders for Life-Sustaining Treatment (POLST) as your surrogate. (Go to our article on POLST for more information.)

✔ Authorize the agent to consent to an autopsy and to make anatomical gifts.

✔ Disqualify an individual from acting as a health care representative (discussed in the following section), prohibit the appointment of a health care representative, or provide for an order of priority of appointment of a health care representative that is different than that set forth in the statute.

Successor or Alternate Agents

The options are to:

✔ Name one or more successors in the document, to serve either consecutively or concurrently.

✔ Delegate the appointment of successors to the then-serving agent.

 

Specify When an Existing Agent’s Authority Will Cease

The transfer of authority from an existing agent to a successor can be problematic, especially if the existing agent is of marginal capacity but is unwilling to give up authority. The statute does not address the issue  of how an existing agent’s authority will end and the successor’s authority commence.

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WHO CAN ACT AS A HEALTH CARE REPRESENTATIVE?

The role of health care representative is entirely new in Pennsylvania.  It is intended to fill in the gap that existed under prior law by designating certain family members to make health care decisions for incompetent patients who do not have a heath care agent who is able and willing to make decisions for them.

In effect, the health care representative in most cases will be selected by the statute, not by the patient himself or herself.

Conditions for Health Care Representative to Act

Before anyone can validly act as a health care representative for an individual, all four of the following conditions must be met:

✔ The attending physician must first determine that the individual is incompetent to make his or her own health care decisions.

✔ Second, the individual:

Does not have a health care power of attorney; or

Has a health care power of attorney, but the health care agent named therein:

Is not reasonably available or

Has indicated an unwillingness to act, and no alternate health care agent is reasonably available.

“Reasonably available” means “readily able to be contacted without undue effort and willing and able to act in a timely manner considering the urgency of the individual’s health care needs.”

✔ Third, no guardian of the person has been appointed for the individual.

✔ Finally, the individual (not the health care representative) must be at least 18 years of age, have graduated from high school, have married, or be an emancipated minor.

 

Who May Act as Health Care Representative?

Oral or Written Designation by Individual. The individual himself, if of sound mind, may designate one or more individuals to act as health care representative by a signed writing or by personally informing the attending physician or health care provider.

Statutory Designation. In the absence of the individual’s own designation or if no such designee is reasonably available, any member of the following classes, in descending order of priority, and who is reasonably available, may act as health care representative:

✔ Spouse of the individual (unless an action for divorce is pending) and the individual’s adult children who are not the children of spouse

✔ Adult child of the individual

✔ Parent of the individual

✔ Adult brother or sister of the individual

✔ Adult grandchild of the individual

✔ Any adult who has knowledge of the individual’s preferences and values, including but not limited to religious and moral beliefs, to assess how the principal would make health care decisions.

NOTE:  In the event multiple members of the same class assume the authority, see below for how disputes between or among them are to be resolved.  An individual may by a signed writing, including a health care power of attorney, provide for a different order of priority.  An individual with a higher priority who is willing to act as a health care representative may assume the authority to act notwithstanding the fact that another individual has previously assumed that authority.

Disqualification to Act as Health Care Representative

An individual of sound mind may disqualify one or more individuals from acting as health care representative in the same manner as specified for designating such representative as described above.  An individual in a health care power of attorney may also disqualify one or more individuals from acting as health care representative.

Upon the petition of any member of the classes set forth above, the court may disqualify for cause shown an individual otherwise eligible to serve as a health care representative.

Unless related by blood, marriage or adoption, a health care representative may not be the principal’s attending physician or other health care provider, nor an owner, operator or employee of a health care provider in which the principal receives care.

Duty to Promptly Communicate Assumption of Authority to All Family Members

A person who has determined that (1) the individual in question meets the four requirements described above and (2) the person is himself or herself qualified by the statute to act as such individual’s health care representative, can unilaterally commence to exercise the powers of health care representative, with no need to first obtain the individual’s or some third party’s prior permission or consent.

However, the health care representative must communicate the assumption of such authority to all members of the individual’s family as specified above who can be readily contacted.

EXAMPLE:  Norbert, a 60-year old  widower with three adult children, requires immediate surgery, but his doctor has determined that because of early-onset Alzheimer’s disease he is not competent to give the consent required before surgery can be performed. Norbert never signed a health care power of attorney.

Mary, one of his children, decides to act as her father’s advocate. Rather than going to court to ask for a Guardian to be appointed for her father, Mary unilaterally declares herself to be his health care representative and communicates this to her two siblings and other family members.

Based on these facts, the hospital must recognize her authority as Norbert’s health care representative and accept the consent to the surgery she gives on her father’s behalf.

 

Written Declaration of Health Care Representative

The attending physician or health care provider may also require a person claiming the right to act as health care representative for a principal to provide a written declaration made under penalty of perjury stating facts and circumstances reasonably sufficient to establish his or her claimed authority.

Resolution of Disputes Among Multiple Health Care Representatives

Majority Vote If Odd Number. If more than one member of a class assumes the authority to act as health care representative and they do not agree on a health care decision, the attending physician or health care provider may rely on the decision of a majority of the members of that class who have communicated their views to the attending physician or health care provider.

Resolution if Evenly Divided. If the members of the class of health care representatives are evenly divided concerning the health care decision, no decision shall be deemed made until the parties have resolved their disagreement.  The method of dispute resolution is left to the members. The existence of a dispute does not permit an individual in a lower class to act as a health care representative. While the class remains evenly divided, health care treatment can be given in accordance with accepted standards of medical practice.

 

ADDITIONAL CONSIDERATIONS WITH HEALTH CARE AGENTS AND REPRESENTATIVES

Health Care Agent’s Scope of Authority

A health care agent generally has the authority to make the same health care decisions regarding the principal’s care, custody, and health care treatment that the principal himself or herself could have made and exercised, subject to any limitations contained in the power of attorney.

The authority of the health care agent may continue beyond the principal’s death to make anatomical gifts, dispose of the remains, and consent to autopsies.

This broad plenary power given to agents is consistent with the principle that an individual does not lose the right of self-determination in the event of incapacity, and his or her agent can exercise this right even if the principal is incompetent.

Pregnancy-Based Limitation on Life-Sustaining Treatment Decisions. A decision made by an agent regarding life-sustaining treatment is subject to special rules when the patient is pregnant, discussed in a prior section of this Article.

Authority of Health Care Representative

The authority of a health care representative, and the process for making decisions, are the same as those applicable to a health care agent, except as to the power to object to health care treatment in certain circumstances, as discussed below.

Compliance with Decisions of Health Care Agent and Health Care Representative

An attending physician or health care provider generally must comply with a health care decision made by a health care representative or a health  care agent (subject to any limitations set forth in the health care power of attorney) to the same extent as if the decision had been made by the principal.

Exception for Principal Not In End-Stage Medical Condition or Permanently Unconscious

An exception to the duty of an attending physician or health care provider to comply with a health care decision made by a health care representative or a health care agent is recognized where the principal is not in an end-stage medical condition nor permanently unconscious.

In that case, health care necessary to preserve the principal’s life must be provided, and can be withheld or withdrawn only if:

✔ The principal is competent and objects to such care, or if

✔ A health care agent objects to the care on behalf of the principal and the agent is authorized to object to such care by the health care power of attorney document.

For the agent to have such authority, the power of attorney document must expressly state that the agent has the power to object to the provision of health care necessary to preserve the principal’s life, even if the principal neither has an end-stage medical condition nor is permanently unconscious.

Right to Object to Care Limited to Health Care Agent. Based on the statutory language, this right to object is limited to a health care agent.  A health care representative, whose authority comes not from a power of attorney signed by a principal but from the statute, does not have the power to object to health care on behalf of an individual who neither has an end-stage medical condition nor is permanently unconscious.

Countermand of Health Care Decisions

The Health Care Agents and Representatives Act (referred to herein as “the Act”) reserves to the principal the right to countermand (i.e., negate) decisions made by the health care agent or health care representative, in some cases even if the principal is incompetent.

Principal of “Sound Mind.  A principal of “sound mind” may countermand any health care decision made by the health care agent or representative at any time and in any manner by personally informing the attending physician or health care provider.

Incompetent PrincipalThe Act states that, regardless of the principal’s mental or physical capacity, a principal may countermand a health care decision made by the principal’s agent or representative that would withhold or withdraw life-sustaining treatment at any time and in any manner by personally informing the attending physician.

The statute requires the attending physician or health care provider to make reasonable efforts to promptly inform the agent or representative of the countermand.

Countermand in Practice. How will the countermand provisions be interpreted and enforced by physicians and other health care providers? Since there is no minimum level of competency needed to countermand a decision to withhold or withdraw life-sustaining treatment, it is easy to imagine situations of abuse of the countermand right, such as a third party who is unduly influencing an incompetent principal trying to use the Act to cancel an agent’s or representative’s health care decision with which the third party disagrees.

Since the statute mandates that the principal must personally inform the attending physician or health care provider of any countermand, that required face-to-face meeting will be an opportunity for the physician or provider to discuss the countermand with the principal. In that setting, attempted countermands that are clearly against the best interests of the patient can hopefully be withdrawn.

As a last resort, a countermand that may harm the principal or be the product of undue influence could serve as grounds for the agent, representative, or other party to petition the Orphans’ Court to adjudicate the principal to be incapacitated and to appoint a Guardian of the Person to assume control over healthcare decision-making. A guardian would not be subject to a countermand.

Effect of Appointment of Guardian of the Person

What happens if an incompetent principal for whom an agent has been making health care decisions is later formally adjudicated to be an “incapacitated person” by the Orphans’ Court, which then appoints a Guardian of the Person for that person?

This should be the unusual situation, since the presence of an agent willing and able to act under a power of attorney is a statutory basis for a court to decline to appoint a guardian.

In such a case, the statute provides that the health care agent will be accountable to both the Guardian of the Person and the principal, and authorizes the Guardian to revoke or amend the health care agent’s appointment to the same extent that the principal would have if he or she were not incapacitated.

The Guardian of the Person may not revoke or amend the instructions given in an advance health care directive (“Living Will”), absent court approval.

But should the Guardian revoke the health care power of attorney?  Apart from compatibility issues that may arise between the parties, the Guardian may want to keep the power of attorney in effect and work with the health care agent, since the attending physician and health care provider may recognize the agent’s authority to make health care decisions in certain situations where they would refuse to honor the same directions if given by a Guardian.

In a 2009 case, the Pennsylvania Superior Court ruled that the Guardians of the Person of a 50-year old ward, who had suffered from profound mental retardation from birth, did not have the authority to decline life-preserving medical treatment on his behalf when the ward did not have an end-stage illness and was not in a persistent vegetative state.

The Court acknowledged that a health care agent does have such power under the  Health Care Agents and Representatives Act, but held that the Act was not intended to extend to Guardians.

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■ How Should Health Care Agents and Representatives Make Decisions?

The Health Care Agents and Representatives Act (herein “the Act”) lays out the decision-making process that both health care agents and health care representatives should follow in making health care decisions. Agents or representatives (referred to together below as a “surrogate”) are not required to follow these steps, but to better ensure that their decisions will be respected and enforced, it is highly recommended that they do so.

Adhering to the statute’s process for decision-making is particularly important as a safe harbor for the health care agent who is choosing to forgo life-sustaining treatment when the principal has not been determined to be in an end-of-life medical condition or permanently unconscious.

Stages of Decision-Making

Under the Act, the surrogate should make health care decisions by employing a three-stage process that incorporates both the substituted judgment and best interests standards.

Stage One: Information Gathering

The surrogate should gather information on the principal’s prognosis and on acceptable medical alternatives regarding diagnosis, treatments, and supportive care. Consultation with doctors would be part of this process.

In the case of surgical procedures for which informed consent is required, the surrogate should obtain all the information that is required to be disclosed under applicable law.

End-Stage Medical Condition. In the case of decisions to be made for a principal with an end-stage medical condition, the information should distinguish between:

✔ Curative alternatives,

✔ Palliative alternatives, and

✔ Alternatives that will merely serve to prolong the process of dying.

Such information should also distinguish between:

✔ The principal’s end-stage medical condition, and

✔ Any other concurrent disease, illness or physical, mental, cognitive or intellectual condition that predated the principal’s end-stage medical condition.

Stage Two: Carrying Out Express Instructions

After consultation with health care providers and consideration of the information obtained as described above, the surrogate should proceed to make health care decisions that are in accord with the surrogate’s understanding and interpretation of the principal’s express instructions, if any, given at a time when he or she had the capacity to understand, make, and communicate health care decisions.

Such “instructions” could be found in:

✔ An advance health care directive signed by the principal, and

✔ Any other clear written or verbal directions that cover the situation presented.

Stage Three: Carrying out Implied Instructions

In the absence of such express instructions, the surrogate should make health care decisions based on the surrogate’s assessment of the principal’s preferences and values, including religious and moral beliefs.

If the surrogate does not have enough evidence of the principal’s instructions, preferences, values, or beliefs on which to base a decision, the surrogate should next take into account whatever evidence there may be at hand regarding such instructions, preferences and values, including religious and moral beliefs, and the surrogate’s assessment of the principal’s best interests, taking into account the following goals and considerations:

✔ The preservation of the principal’s life

✔ Relieving the principal from suffering

✔ The preservation or restoration of the principal’s functioning, taking into consideration any concurrent disease, illness or physical, mental, cognitive or intellectual condition that may have predated the principal’s end-stage medical condition.

Presumption in Favor of Food and Water

In the absence of a specific, written authorization or direction by the principal to withhold or withdraw nutrition and hydration administered by gastric tube,  intravenously, or by other artificial or invasive means, a surrogate shall presume that the principal would not want nutrition and hydration to be withheld or withdrawn.

Grounds for Overcoming Presumption Favoring Food and Water

The presumption in favor of providing food and water may be overcome by the principal’s previous clearly expressed wishes to the contrary.

In the absence of such clearly expressed wishes, the presumption may be overcome if the surrogate considers the values and preferences of the principal and assesses the factors set forth in Stage Three above, and from them determines that the principal would not want artificial nutrition and hydration to be initiated or continued.

 

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