Copyright 2007 by Jeffrey A. Marshall, Marshall, Parker & Associates, 49 E. 4th Street, Suite 200, Williamsport, PA 17701, www.paelderlaw.com.

Pennsylvania has revised and updated its laws covering health care decision making for incapacitated persons. The new law, Act 169 (the “Act.”),2 took effect on January 29, 2007. It regulates advance health care directives like living wills and health care powers of attorney. It also authorizes family members to make decisions for their loved ones.

This article is intended to help lawyers, health care providers, and consumers understand the requirements of the new law, and assist them to implement effective advance care planning. To go directly to a particular section of the Guide, please click on the hyperlinks below.

1-1 Overview

For many years, Pennsylvania was criticized for having out-of-date laws regarding health care powers of attorney and other advance directives. This deficiency contributed to poor end-of-life care.6 In 2006, Pennsylvania enacted sweeping legislation designed to enhance the right and ability of individuals to control the fate of their health care. Act 169 of 2006 codifies a comprehensive set of laws governing health care decision making for incompetent persons.

Act 169 creates statutorily-sanctioned methods for competent adults to provide instructions for their health care in the event of incapacity. The Act authorizes a qualified individual, referred to as the “principal,” to appoint a surrogate decision maker(s) who can be authorized to make any health-care decision, including those concerning end-of-life treatment. It updates Pennsylvania ”s laws regarding living wills and out-of-hospital do-not-resuscitate orders. And, it authorizes family members and other informed adults to make health decisions for individuals lacking a designated surrogate.

The legislation was the result of years of discussion, lobbying, and negotiation by many interest groups.7 (An earlier version, SB 492, was vetoed in 2004). The Act shows the effects of its collective parentage – it is lengthy and intricate and occasionally inconsistent.8 Unfortunately, its complexity increases the potential that its provisions will be either misunderstood or disregarded by health care providers.

Act 169 amends and restructures the prior Chapter 54 of Title 20 of the Pennsylvania Consolidated Statutes. It incorporates laws regarding advance health care directives and decision-making by agents and representatives into a revised Chapter 54. It repeals prior Chapter 54A. The new Chapter 54 is organized in five sub-chapters:

Subchapter A (General Provisions). This subchapter provides general provisions and definitions of some of the terms that are used in the Act. However, some notable terms such as “sound mind” are not defined.

Subchapter B (Living Wills). updates Pennsylvania ”s 1992 law regarding health care “declarations” (which are now referenced using the more common term “living wills”). A living will is operative when a patient is determined to be incompetent and has an end-stage medical condition or is permanently unconscious.

Subchapter C (Health Care Agents and Representatives). Subchapter C covers the authority and responsibilities of health care agents and representatives. A health care agent is a proxy decision maker appointed by a principal to make health-care decisions in the event the principal later becomes incompetent.9 The Act sets forth a set of standards for the agent to follow in making decisions.

Where another surrogate decision maker is not otherwise available for an individual who lacks decision making capacity, the Act provides for decision making authority by a “health care representative.” An individual “of sound mind” may designate this representative. Otherwise, the statute creates the following default order of priority:

(1) The spouse, unless an action for divorce is pending, and the adult children of the principal who are not the children of the spouse.

(2) An adult child.

(3) A parent.

(4) An adult brother or sister.

(5) An adult grandchild.

(6) An adult who has knowledge of the principal”s preferences and values, including, but not limited to, religious and moral beliefs, to assess how the principal would make health care decisions.

Subchapter D (Combined Form). The Act contains a form10 that combines a health care power of attorney with living will end of life treatment instructions. This form is offered solely as an example and its use is optional, but will likely become widespread.

Subchapter E (Out-of-Hospital Nonresuscitation). A do-not-resuscitate (DNR) order is a medical order written by a patient”s attending physician that directs medical personnel to forgo cardiopulmonary resuscitation (CPR) if the patient”s heart or breathing stops. There are two varieties of DNR orders. The traditional DNR order is given by the doctor of a hospital in-patient directing that resuscitation not be performed in the event that the patient”s heart or breathing stops. The order, often referred to as a “no code” or “comfort care” order, is usually placed on the patient”s chart. The second variety of DNR gives similar instructions for non-hospitalized individuals.

A patient”s desire to forgo CPR can be more difficult to implement when the patient does not reside in an institutional setting. Well-meaning family members and other caregivers tend to call 911, drawing the response of an emergency medical services ( EMS ) team, which is trained to provide CPR and has no time to investigate the patient”s instructions for care. In 2002, Pennsylvania enacted Chapter 54A to provide a means for non-hospitalized, but terminally ill, patients to ensure that their choices regarding end-of-life care are honored by EMS personnel. The new Act repeals Chapter 54A and essentially incorporates the prior law into Chapter 54.

The Act also requires the Department of Health to consider, in consultation with an advisory committee, adoption of a standardized form for a physicians-order-for-life-sustaining-treatment (POLST), which would provide for continuity of DNR and other life-sustaining treatment orders from one treatment setting to another.

Updating Pennsylvania ”s health care decision making laws was badly overdue. Prior statutory provisions were in conflict with the realities of medical practice and the conventions followed by health care providers. Applicable standards and procedures for health care agents were not clearly defined and there was no statutory authorization for the common practice of decision making by an incompetent patient”s family members.

Despite its complexity, Act 169 will hopefully enhance patient decision-making autonomy while providing protection for both patients and health care providers. It should encourage the preparation of more flexible advance directives, such as health care powers of attorney, over the problematic living will. However, it is important for lawyers, health care providers, and consumers to recognize that the preparation and execution of an advance directive is merely one step in what needs to be an advance care planning process. Advance directive documents are insufficient in themselves to address the long term needs of those who suffer from age related illness, debility and dementia.11 To be most effective, planning must involve reflection, discussion, and communication with family members and health care providers.

1.2 Living Wills

1-.2.1 What is a “Living Will”

“Living will” laws were an early legislative attempt to devise a method by which incapacitated individuals could exercise their qualified legal right to refuse unwanted treatment.

With a living will, an individual provides treatment instructions regarding the types of medical treatment and care he or she wants to receive or refuse at the end of life. This document is typically used by people to describe the point at which they would no longer desire certain types of life-prolonging medical treatment, but it may also document an individual”s desire for continuation of treatment.

These documents and the related law are very much misunderstood even by the physicians and other health-care providers who are responsible for their implementation. Reality and legality are often in conflict.12

In 1992 Pennsylvania enacted its first statute authorizing the use of living wills.13 The 1992 law referred to these directives as “declarations.” But virtually everyone continued to refer to them as “living wills.” Act 169 uses the more common term “living will.”

1-2.2 Who may make a “Living Will”14

Under Act 169, the person signing a living will is called the “principal.” The principal must be 18 years old, or married, or a high school graduate or emancipated minor. The principal must also be of “sound mind.” The Act does not define the term “sound mind,” which leaves open the difficult issue of the level of capacity required to execute the document.15 The drafters of the Act noted that their intention was to rely on the general presumption of sound mind, absent clear evidence to the contrary. A health care provider, in good faith, can rely on the presumption of a principal”s sound mind.16

A living will must be dated and signed by the principal by signature or mark. In the alternative, it may be dated and signed by another individual on behalf of and at the direction of the principal if the principal is unable to sign, but specifically directs the other individual to sign for them. A health care provider and its agent may not sign a living will on behalf of and at the direction of a principal if the health care provider or agent provides health care services to the principal.1

A living will must be witnessed by two individuals, each of whom is 18 years of age or older. A person who has signed the advance directive on behalf of the principal may not also be a witness.19 There is no requirement that the document be notarized.

1-2.4 When Does a Living Will become Operative20

The term “operative” is not defined by Act 169. Impliedly, the use of the term means that the living will has no force or effect prior to all of the operative conditions being in existence. A number of conditions must exist for a living will to be “operative.”

A living will becomes operative when:

(1) a copy is provided to the attending physician; and

(2) the principal is determined by the attending physician to be incompetent and to have an end-stage medical condition or to be permanently unconscious.

Thus a living will is operative only if all three of these conditions exist:

(1) the attending physician has received a copy of the document.

(2) the attending physician has determined that the principal is incompetent.

(3) the attending physician has determined that the principal has an end-stage medical condition or is permanently unconscious.

The Act defines “attending physician” as follows:

“”Attending physician.” The physician who has primary responsibility for the health care of a principal or patient.”20

The Act defines incompetency as follows:

“”Incompetent.” A condition in which an individual despite being provided appropriate medical information, communication supports and technical assistance, is documented by a health care provider to be:

(1) unable to understand the potential material benefits, risks and alternatives involved in a specific proposed health care decision;

(2) unable to make that health care decision on his own behalf; or

(3) unable to communicate that health care decision to

any other person.

The term is intended to permit individuals to be found incompetent to make some health care decisions, but competent to make others.”22

The Act defines “end-stage medical condition” as follows:

“”End-Stage Medical Condition.” 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. Except as specifically set forth in an advance health care directive, the term is not intended to preclude treatment of a disease, illness or physical, mental, cognitive or intellectual condition, even if incurable and irreversible and regardless of severity, if both of the following apply:

(1) the patient would benefit from the treatment, including pallative care.

(2) such treatment would not merely prolong the process of dying.”23

The Act defines “permanently unconscious” as follows:

“”Permanently unconscious.” A medical condition that has been diagnosed in accordance with currently accepted medical standards and with reasonable medical certainty as total and irreversible loss of consciousness and capacity for interaction with the environment. The term includes, without limitation, an irreversible vegetative state or irreversible coma.”24

Will most health care providers be cognizant of and follow these exacting specifications before giving operative effect to a patient”s living will?25

1-2.5 Duties of Health Care Providers26

The Act places a number of obligations on physicians and other health care providers. Health care providers who attempt to meet these obligations in good faith are exonerated from criminal, civil, and professional liability and discipline.

When a living will has become operative, the attending physician and other health care providers must either act in accordance with its provisions or comply with the transfer requirements of the Act. The transfer requirements are set out in Section 5424 of the Act.27

A health care provider may not be subject to criminal or civil liability, discipline for unprofessional conduct or administrative sanctions and may not be found to have committed an act of unprofessional conduct as a result of causing or participating in the initiating, continuing, withholding or withdrawal of life-sustaining treatment or cardiopulmonary resuscitation from a patient or principal, if the health care provider believes in good faith that he has followed the patient”s or principal”s wishes as expressed in a living will, order or revocation.28

Health-care providers are at-risk of assuming too much from the mere existence of a living will. Assumptions may be unwarranted. If a living will may be relevant to treatment decisions, providers should carefully review the actual document. It may include all sorts of counter-intuitive limitations and contingencies. The document might state that the principal wants all medical treatments to sustain life for a period of time after a diagnosis of permanent unconsciousness, but after that period of time, certain treatments should be withheld or withdrawn. Or, the document may direct that life supportive treatment should be withdrawn, but only after a family member agrees.

The limitations on liability and sanctions apply only if the health care provider believes in good faith that it is following the instructions in the living will. It may be difficult for a provider who has not read the document to claim good faith.

If an individual does not make a living will, no inference should be drawn regarding the intent of the individual to consent to or to refuse the initiation, continuation, withholding or withdrawal of life-sustaining treatment.29

Any health care provider to whom a copy of a living will is furnished shall make it a part of the medical record of the principal and, if unwilling to comply with the living will, promptly so advise the principal, or the principal”s health care agent or representative.30 The obligation to make the living will a part of the principal”s medical record, does not require a health care provider to maintain copies of medical records beyond the requirements otherwise imposed by applicable law and regulation.31

If a living will is revoked by the principal, the attending physician or other health care provider must make the revocation part of the principal”s medical record.32

If the attending physician has made a determination that the principal has an end-stage medical condition or is permanently unconscious, the attending physician must promptly certify this status in writing.33

An emergency medical command physician may instruct emergency medical personnel to withhold or discontinue cardiopulmonary resuscitation for a principal whose living will has become operative34 although an out-of-hospital DNR order takes priority.35 (See the additional discussion below regarding such DNR orders).

If a specific direction in a living will is held to be invalid, the invalidity does not negate other directions in the living will that can be put into effect without the invalid direction.36

1-2.6 Duration37

A living will does not become ineffective solely due to the passage of time. Unless a living will states a time of termination, it is valid until revoked by the principal, notwithstanding the lapse of time since its execution.

1-2.7 Revocation38

The Act indicates a preference for the continuation of life-sustaining treatment. Thus, a principal may revoke a living will at any time and in any manner regardless of the mental or physical condition of the principal. The revocation is effective upon communication to the attending physician or other health care provider by the principal or a witness to the revocation.

1-2.8 Validity of non-conforming documents39

Individuals do not have to update their prior advance directives due to the enactment of Act 169. However, they may want to update documents that are inadequate or inconsistent with their current philosophy and preferences.

Pre-existing and out of state living wills are valid so long as they do not permit treatments that are inconsistent with Pennsylvania law. This means that pre-existing living wills such as the “check the box” living will form that was included in the 1992 law are valid. Indeed, the prior form, with all of its deficiencies, can continue to be used.

1-2.9 Optional Form40

There is no required form or format for a living will. A living will may be in any written form which expresses the wishes of a principal regarding the initiation, continuation, withholding or withdrawal of life-sustaining treatment. It may include other specific directions and may designate an agent to make health care decisions if the principal is incompetent and has an end-stage medical condition or is permanently unconscious.

The Act includes an example of a living will. The example appears as part of the combined form which is set forth in Subchapter D of the Act. Because it is included in the statute, it can be anticipated that the example form will be widely utilized and distributed to the public by physicians, hospitals, and nursing facilities. On the other hand, a living will is a very personal document that should be expressive of the individual”s own autonomous circumstances, values, and goals. The use of any kind of standard form document runs counter to these considerations.

Living wills were the first and remain the best-known and most widely used form of advance directive. Unfortunately, many consumers and their advisors fail to appreciate the significant limitations of the living will as a tool for incapacity planning. Living wills are operative only if the principal has been declared by the attending physician to be in an end-stage medical condition or permanently unconscious. Most incompetent individuals who need decisions regarding health care are not in an end-state medical condition or permanently unconscious. A living will is neither operative nor relevant with regard to questions about day-to-day care, placement, or treatment options, and the many other health decisions that need to be made for non-end of life patients who lack capacity.

The limitations of the living will go beyond its narrow applicability. The living will begins with a contradictory premise – that a principal can provide truly informed consent about unknown treatment alternatives in unknown circumstances at an unknown future time.41 It is informed consent based on lack of information. The inadequacy of living wills, and to some extent of advance directives in general, is described by The President”s Council on Bioethics:

“Advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.

Living wills, although much talked about and recommended by many people, are not a panacea. They address, at most, but a small fraction of the decisions caregivers must make for incapacitated persons. Even if everyone executed a living will, and even if the instructions were followed as written, the big questions of long-term care and ethical decision-making would not disappear or become readily manageable: there are too many situations in which following orders is not the best way to give care, and giving care always requires more in terms of resources, character, support, and judgment than any legal instrument can possibly provide. We firmly believe that the American people-both potential patients and potential caregivers-should not be misled or encouraged to think otherwise. Moreover, in addition to the practical difficulties with living wills that we exposed in Chapter 2, the duties of actual-as opposed to imagined-human caregiving always arise within concrete situations experienced in the present, not conjured situations imagined in the past. Precisely because the obligation of caregivers here and now is always to the patient before them here and now, instructions written long in advance can rarely be simply authoritative or dispositive.

To be sure, a few of the difficulties with living wills could be ameliorated by improved and more prudent drafting: for example, every writer of a living will should be asked to consider writing into such a document-after, of course, discussing it with the relevant parties-a provision acknowledging that the wishes expressed in the document are based on incomplete information and explicitly authorizing family members and clinicians to override the specific instructions if they judged it would serve the patient”s present welfare to do so. Also, rather than write blanket exclusions of specific kinds of potential treatment interventions, advance instructions might explicitly allow for temporary trials of certain treatments, permitting the patient”s caregivers to see if the treatments might actually be beneficial without creating a situation in which the treatment cannot be easily stopped. But even such improvements do not address the fundamental limitations and shortcomings of advance instruction directives, which can never replace prudent judgment by devoted caregivers about what a patient now needs. Ethics committees, drafters of professional guidelines, policymakers, and legislators at both the state and federal levels should address these failings and search for more practical and responsible alternatives.”42

1-3 Health Care Agents

1-3.1 Overview – Health Care Power of Attorney.

As a result of the limitations of the living will, most commentators recommend that individuals authorize a trusted agent to make decisions for them in the event of incapacity. As noted by the President”s Council on Bioethics:

“Advance proxy directives are much more valuable [than living wills] and should be encouraged.

Instead of attempting to specify what should be done, advance proxy directives specify who should make crucial decisions on our behalf. These instruments ratify our fitting desire to be placed in the hands of loving caregivers whom we trust with our well-being when we can no longer act to promote it ourselves. Naming of proxy decisionmakers provides clear identification of who shoulders responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care.”43

Act 169 acknowledges the importance of proxy decision making by providing for both health care agents44 and representatives (if an agent is unavailable).

A health care power of attorney appoints a person chosen by the principal to make decisions whenever the principal lacks capacity. By using a health-care power of attorney, the principal can authorize an agent to make health-care decisions whenever the principal is unable to do so. The agent can act regardless of whether the principal is terminally ill or permanently unconscious. Guidance as to the principal”s philosophy regarding end-of-life care and other situations that may arise can be included in the document.

The appointment of an agent combined in one document with living will end-of life guidance is sometimes referred to as a “comprehensive health care advance directive.” “Because it is more comprehensive and flexible than the other available planning tools, a comprehensive health-care advance directive is the preferred legal tool for planning these types of decisions.”45

The example form included in Act 169 is a comprehensive health care advance directive.

The appointment of an informed and forceful agent can help to ensure that the principal will receive appropriate health care, be treated with dignity and respect, be able to limit pain, and will avoid treatments and interventions that are not desired. A health care power of attorney can express the principal”s general values and philosophy, provide specific instructions regarding care and potential treatment modalities, and empower the agent to serve as health-care advocate for the principal.

The agent can be a trusted family member or friend who is close to the principal and understands the principal”s values. The agent can be empowered to advocate for the application of those values to whatever situation may arise. The agent can review the circumstances, consult with the health-care providers, consider the prognosis, and then apply the principal”s values as set forth in the document, or as otherwise known to the agent, in making decisions.

The health-care power of attorney traditionally has been drafted as a “springing” agency that is effective only when the principal has been determined to be unable to make health-care decisions. However, Pennsylvania , unlike some states, does not prohibit a principal from creating an immediately effective document. This is fortunate. As a result of the HIPAA privacy rules, discussed hereafter,46 it may be desirable to authorize the agent to receive protected health information even though the principal has not been determined to be incapable of making health-care decisions.

The appointment of a health-care agent can be combined with the appointment of an agent for financial matters in one comprehensive power of attorney, or financial and health-care issues can be covered in separate documents.

Act 169 provides extensive statutory guidance for health care decisions made by health care agents and health care representatives. It directs the Department of Health to supervise implementation by providers.47

While the comprehensive advance health care directive is the preferred planning tool, the principal can execute a separate living will. If a comprehensive document is used, it should contain appropriate end-of life guidance from the principal and conform to the requirements for end-of life decision making set forth in the Act. To facilitate the use of comprehensive advance health care directives, the execution requirements for health care powers of attorney mirror those for the living will.

1-3.2 Execution Requirements.48

The execution requirements for a health-care power of attorney are essentially the same as those for a living will under section 5442 (discussed above). They differ markedly from the requirements for non-health care powers of attorney under Chapter 56. When combining financial and health-care agency in one document, the lawyer should be careful to observe the execution requirements of both Chapter 54 and Chapter 56.

The principal must be of “sound mind.” The principal must be 18 years old, or married, or be a high school graduate or emancipated minor. A health care power of attorney must be dated and signed by the principal by signature or mark or by another individual on behalf of and at the direction of the principal if the principal is unable to sign, but specifically directs another individual to sign the document. A health care provider and its agent may not sign a health care power of attorney on behalf of and at the direction of a principal if the health care provider or its agent provides health care services to the principal.

A health care power of attorney must be witnessed by two individuals, each of whom is 18 years of age or older. A person who has signed the advance directive on behalf of the principal may not also be a witness. There is no requirement that the document be notarized.

1-3.3 Mandatory and Optional Provisions49

A health-care power of attorney is a flexible document with few mandatory requirements. It can be adapted to the principal”s unique circumstances and preferences. The document may be as simple as merely identifying the principal and agent and authorizing the agent to make heath care decisions on behalf of the principal. Or it may be as expansive as the principal desires and contain any other provisions the principal may desire regarding the implementation of health care decisions and related actions by the agent.

Here are some examples of the types of provisions that the document may include:

(1) Describe any limitations that the principal imposes upon the authority of the health care agent.

(2) Indicate the intent of the principal regarding the initiation, continuation, withholding or withdrawal of life sustaining treatment.

(3) Indicate whether the principal wants tube feeding or any other artificial or invasive form of nutrition or hydration.

(4) Disqualify an individual from acting as a health care representative, prohibit the appointment of a health care representative or provide for an order of priority of appointment of a health care representative pursuant to section 5461(d) (relating to decisions by health care representative).

(5) Nominate a guardian of the person of the principal as provided in section 5460 (relating to relation of health care agent to court-appointed guardian and other agents).

(6) Contain other provisions as the principal may specify regarding the implementation of health care decisions and related actions by the health care agent or health care representative.

(7) Request that the health care agent or health care representative exercise his sole and absolute discretion to consult the principal”s relative, cleric or physician should the health care agent or health care representative be uncertain of the principal”s wishes or best interests.

1-3.4 When Operative50

Unless the document specifies otherwise, a health-care power of attorney is a springing power of attorney. The agency only becomes operative when two events have occurred:

(1) a copy is provided to the attending physician; and

(2) the attending physician determines that the principal is incompetent.

These default rules can create a trap for the unwary. Under federal health care privacy laws a health care agent is the personal representative of the principal and has access to the principal”s health information.51 However, with a springing power of attorney, the agent may not gain the status of personal representative until the incompetency determination has been made by the attending physician. But, how does an as yet inoperative agent obtain the information needed to make the health-care power of attorney operative?

To resolve this issue, the power of attorney can specify that it is immediately effective for the limited purpose of determining the principal”s capacity to make health care decisions and that the agent is authorized to access information concerning the principal”s capacity to make health-care decisions. In addition, many individuals want certain family members to have immediate access to their protected health information. This broader authorization can be made immediately effective.

[Practice Tip] Language similar to the following may be included where the principal wants to allow both the initial agent and alternate agents (e.g. various children) to have access to the principal”s protected health information.

In addition to the other powers granted by this document, my Agent shall have the full authority to serve as my personal representative for all purposes of the Health Insurance Portability and Accountability Act of 1996, (Pub. L. 104-191), 45 CFR Section 160 through 164. I consent to and direct covered entities to provide my protected health information to all persons designated in this document as my Primary Agent and, in addition, to all persons designated in this document as a Successor Agent or serving as Substitute Agent. The authorization and consent to disclosure set forth in this paragraph shall apply whether or not I am competent to make or communicate health care decisions for myself and whether or not a copy of this Health Care Power of Attorney has been provided to my attending physician. The Act specifies that a health-care power of attorney does not become “stale” with the passage of time. Unless the health-care power of attorney states a time of termination, it is valid until revoked, notwithstanding the lapse of time since its execution.52 However, clients should be counseled to reconsider and update their advance directives periodically, especially in the event of the occurrence of one of the 5 D”s:

(1) You reach a new DECADE

(2) You experience a DEATH of family or friend

(3) You DIVORCE

(4) You receive a new and significant DIAGNOSIS

(5) You have a significant DECLINE in your condition as measured by Activities of Daily Living or cognition.53

1-3.5 Appointment of Health Care Agents54

The principal may name multiple and/or successor agents. Co-agents must act jointly and are not authorized to act independently unless the document expressly provides otherwise.

Consider naming an alternate agent if the initial agent is unavailable for any reason. If multiple agents are named, include a mechanism for resolving disagreements.

The Act attempts to reduce dependency and limit conflicts of interest by specifying that health care providers may not be appointed as agent for the principal.

Who may not be appointed health care agent. –Unless related to the principal by blood, marriage or adoption, a health care agent of the principal may not be any of the following:

(1) The principal”s attending physician or other health care provider.

(2) An owner, operator or employee of a health care provider in which the principal is receiving care.55

These limitations appear to be mandatory and apparently cannot be waived by the principal. Thus, a patient may not validly appoint his or her physician as agent unless they are related by blood, marriage or adoption.

1-3.6 Authority of Health Care Agent56

1-3.6.1 Extent of Authority

By default, a health-care agent”s authority is nearly extensive as the principal”s would be, if the principal were competent.

In a key provision, Act 169 specifies that, except as limited in the document or by the Act”s restrictions in regard to life-sustaining treatment, a health care agent has “the authority to make any health care decision and to exercise any right and power regarding the principal”s care, custody and health care treatment that the principal could have made and exercised.”57

The implications of this broad authority should not be ignored. For example, it appears that an agent may be authorized to decline health care necessary to preserve life even though the principal has neither an end-stage medical condition nor is permanently unconscious.58

The existence of such potentially sweeping authority makes it crucial to personalize the document to reflect any limitations that the principal wants to place on the agent”s powers.

The agent”s authority can carry over to some post-mortem issues. “The health care agent”s authority may59 extend beyond the principal”s death to make anatomical gifts, dispose of the remains and consent to autopsies.”60

1-3.6.2 The Agent”s Decision-Making Process61

1-3.6.2.1 Responsibilities of the Agent

The Act sets out detailed requirements for the decision-making process to be followed by health care agents (and representatives).

The agent is required to consult with health care providers to obtain information. Special informational requirements apply to life-sustaining treatment decisions.62 After review of the information, decisions are to be made based upon the following criteria in this order of priority:

(1) In accordance with the agent”s understanding and interpretation of the instructions (including clear verbal instructions) given by the principal;

(2) In the absence of instructions, in conformity with the agent”s assessment of the principal”s preferences and values, including religious and moral beliefs;

(3) In the absence of knowledge of (1) and (2), in accordance with the agent”s assessment of the principal”s best interests.

The Act requires the agent to proceed through the following decision-making sequence:

(1) The health care agent shall gather information on the principal”s prognosis and acceptable medical alternatives regarding diagnosis, treatments and supportive care.

(2) In the case for procedures for which informed consent is required under Section 504 of the Act of MARCH 20, 2002 (P.L. 154, NO.13), known as the medical care availability and reduction of error (MCARE) Act,63 the information shall include the information required to be disclosed under that Act.

(3) In the case of health care decisions regarding end-of life of a patient with an end-stage medical condition, the information shall distinguish between curative alternatives, palliative alternatives and alternatives which will merely serve to prolong the process of dying. The information shall 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.

(4) After consultation with health care providers and consideration of the information obtained in accordance with paragraphs (1), (2) and (3), the health care agent shall make health care decisions in accordance with the health care Agent”s understanding and interpretation of the instructions given by the principal, at a time when the principal had a capacity to understand, make and communicate health care decisions. Instructions include an advance health care directive made by the principal and any clear written or verbal directions that cover the situation presented.

(5) (I) In the absence of instruction, the health care agent shall make health care decisions that conform to the health care agent”s assessment of the principal”s preferences and values, including religious and moral beliefs.

(II) If the health care agent does not know enough about the principal”s instructions, preferences and values to decide accordingly, the health care agent shall take into account what the agent knows of the principal”s instructions, preferences and values, including religious and moral beliefs, and the health care agent”s assessment of the principal”s best interests, taking into consideration of the following goals and considerations:

(A) The preservation of life.

(B)The relief from suffering.

(C)The preservation or restoration of functioning, taking into account any concurrent disease, illness or physical, mental, cognitive or intellectual condition that may have predated the Principal”s end-stage medical condition.

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

(B) The presumption may be overcome by previously clearly expressed wishes of the principal to the contrary. In the absence of such clearly expressed wishes, the presumption may be overcome if the health care agent considers the values and preferences of the principal and assesses the factors set forth in subparagraphs (I) and (II) and determines it is clear that the principal would not wish for artificial nutrition and hydration to be initiated or continued.

Unless specifically provided otherwise in the health care power of attorney, the health care agent has the same rights and limitations as the principal to request, examine, copy and consent or refuse to consent to the disclosure of medical or other health care information.64 However, a health care agent may not disclose health care information regarding the principal except as is reasonably necessary to perform the agent”s obligations to the principal or as otherwise required by law.65

1-3.6.2.2 Special Requirements for Life-Sustaining Treatment Decisions66

The Act contains special requirements regarding life-sustaining treatment decisions made by an agent.

“”Life-sustaining treatment” is 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. In the case of an individual with an advance health care directive or order, the term includes nutrition and hydration administered by gastric tube or intravenously or any other artificial or invasive means if the advance health care directive or order so specifically provides.”67

A life-sustaining treatment decision made by a health care agent is subject to the decision-making process discussed below and also to the provisions of Sections 5429 (relating to pregnancy), 5454 (relating to when health care power of attorney operative) and 5462(a) (relating to duties of attending physician and health care provider).

In the case of health care decisions regarding life-sustaining treatment of a principal with an end-stage medical condition, the agent must gather information that distinguishes between curative alternatives, palliative alternatives and alternatives which will merely serve to prolong the process of dying. The information must 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.68

In the absence of a written direction to the contrary, the Act creates an initial presumption that the principal would not want nutrition and hydration withheld or withdrawn. It specifies how that presumption may be overcome.69 In establishing whether the presumption has been overcome, the Act distinguishes between clearly expressed wishes of the principal regarding nutrition and hydration and the absence of such clearly expressed wishes.70

[Practice Tip]

Because there is a presumption that a principal with an end-stage medical condition or permanently unconscious would want nutrition and hydration, it is especially important for the lawyer to discuss this issue with the client. The client”s desires in this regard should be clearly expressed in any advance directive document.

1-3.6.3.3 Supervision by the Department of Health

The Act requires the Pennsylvania Department of Health to ensure that health care providers under its jurisdiction have policies and procedures in place to implement the decision making process described in this subsection of the Act.71

This means that providers will need to develop appropriate policies and procedures where decisions are to be made by agents and representatives.

1-3.7 Countermand72

The principal need not be “of sound mind” to reverse any decision made by the agent that would withhold or withdraw life-sustaining treatment. A life-sustaining countermand may be made at any time and in any manner and regardless of the mental and physical capacity of the principal by personally informing the attending physician.

To countermand other decisions made by the agent, the principal must be “of sound mind.”

As with other usages of this term in Pennsylvania statutes, “sound mind” is not defined in the Act. This raises a number of difficult questions: (1) when does a patient no longer have the “sound mind” capacity to countermand a health care decision (decisional capacity), (2) how and by whom is the existence or lack of sound mind capacity determined; (3) how does “sound mind” capacity differ from incompetency as defined in the Act?

The term “sound mind” may have a different import in the medical treatment context than in it”s other usages. For example, “sound mind” is the capacity required to make a will, 20 Pa.C.S. §2501, but are the factors to be considered in making a determination of capacity in testamentary situations the same as with health care?73 While lawyers may think of “sound mind” by analogy to testamentary capacity, health care providers will be more likely to conceptualize it in terms of informed consent.

By not defining “sound mind” the Act provides little direction on the question of the extent to which the principal must understand the nature and consequences of his or her countermand action. By default, great discretion resides with those receiving the countermand (e.g. hospital and nursing home staff, nurses, doctors) in making the “sound mind” determination.

This approach is particularly troubling in the medical treatment context. Legally, all adults may be presumed competent unless proven otherwise. But, older hospital patients and nursing home residents are at particular risk of paternalistic we-know-what”s-best-for-you attitudes that are antagonistic to personal autonomy. Without guidance that emphasizes patient self-determination, some provider staff may presume that their aged residents lack “sound mind.”

The Act”s failure to define this key term “sound mind” thus seems to run counter to the Act”s emphasis on protecting the right of patients to fully participate in and direct their own health care decisions.

A countermand of a particular decision does not affect the authority of the agent to make other decisions.74

1-3.8 Amendment75

While of sound mind,76 a principal may amend a health care power of attorney.77 An amendment must be in writing. It may include the revocation in part of the health care power of attorney or the designation of new or additional health care agents.

1-3.9 Revocation78

“Sound mind” is required to revoke a health-care power of attorney. Unlike an amendment, a revocation need not be in writing. The Act specifies two methods of revocation:

(1) by a writing executed in accordance with the provisions of section 5452 (relating to execution); or,

(2) by personally informing the attending physician, health care provider, or health care agent that the health care power of attorney is revoked.

The Act provides no guidance as to who makes the decision as to whether the principal is of sound mind to revoke the power of attorney.

A health care provider may rely on the effectiveness of a health care power of attorney unless notified of its revocation. A health care agent, knowing of the revocation of the health care power of attorney, may not make or attempt to make health-care decisions for the principal.79

1-3.10 Relation of Agent to Guardian80

A health-care power of attorney can include a provision nominating a guardian of the person for the principal in the event of incapacity proceedings. If a court determines that the appointment of a guardian is necessary, the court shall appoint a guardian in accordance with the principal”s most recent nomination except for good cause or disqualification.81

If a guardian of the person to make health care decisions is appointed by a court, the health care agent is accountable to the guardian as well as to the principal. The guardian may revoke or amend the appointment of the health care agent but may not revoke or amend other instructions in an advance health directive absent judicial authorization.82

1-3.11 Payment of Expenses83

In fulfilling the health care needs for a principal, a health care agent may incur reasonable expenses, including the purchase of health care insurance, to the extent the expenses are not otherwise covered by insurance or other similar benefits. Payment for the expenses or reimbursement to the health care agent for the expenses from the principal”s funds shall be made by either of the following:

(1) A guardian of the estate of the principal.

(2) An agent acting on behalf of the principal under a power of attorney if the agent has the power to disburse the funds of the principal.

1-3.12 Validity of Non-Conforming Powers of Attorney84

The Act does not limit the validity of powers of attorney executed prior to the Act”s effective date. Health care powers of attorney executed in another state or jurisdiction in conformity with the laws of that state or jurisdiction are valid, except to the extent that they would allow an agent to make a health care decision that is inconsistent with the laws of this Commonwealth.

While health care providers will usually respect an individual”s out of state advance directive, persons who spend significant time in two different states may wish to make certain that the directive will be accepted, understood, and enforceable in each. In some cases, it may be appropriate to have separate directives for the separate jurisdictions.

1-4 Health Care Representatives85

1-4.1 Overview

Perhaps the most significant aspect of Act 169 is the statutory authorization of health care decision-making by the family of an incompetent principal. This brings Pennsylvania law into conformity with long prevailing medical practice.

If a patient cannot make decisions and has created no advance directive, health care providers traditionally have turned to family members for treatment decisions. A close family member is allowed to exercise “substituted judgment” on behalf of the patient.

Family members are considered to be in the best position to know what treatment decisions the patient himself would make if competent. And resort to family decision making for incapacitated patients usually does provide decision makers who are concerned and available.

However, decision making by family members is not without some problems and risks. Conflicts among family members are possible. The most knowledgeable surrogate decision maker may not even be a member of the family. And family members may make decisions based upon ignorance, a desire to end the family”s stress, or downright bad faith and ill motives.

There have been troubling studies that have cast doubt on the commonly held belief that family members can accurately predict what kind of treatment a patient would want.86 These studies present statistically significant deviations between family members best guess of a patient”s preferences and the patient”s actual preferences.

It is better for everyone, patients, providers, and families, if advance directives are in place and the individual has directed the order of surrogate decision making and provided guidelines for the decisions that the surrogate will be making. It is better still, if the individual has also discussed his or her values and preferences with the surrogate.

Nevertheless, where another surrogate decision maker is not otherwise available for the individual who lacks decision making ability, decisions must still be made. In these circumstances, the Act provides for the passing of decision making authority to a “health care representative.” Acting without court appointment or involvement, a representative can make health care decisions for individuals in circumstances specified in the Act.

The authority and responsibilities of representatives are similar to those of health care agents. The default powers of the representative are more limited than the agent in regard to life-sustaining treatment. The Act sets out methodologies for resolving a number of family consent related issues, such as the order of decision-making priority and the handling of disagreements among members of the same representative class.

1-4.2 For Whom May a Representative Make Decisions87

A health care representative may only make a health-care decision for what might be termed a “qualified person.” To be qualified for decision-making by a health-care representative, an individual must meet all of the following criteria:

(1) the attending physician has determined that the individual is incompetent;

(2) the individual is at least 18 years of age, has graduated from high school, has married or is an emancipated minor;

(3) (i) the individual does not have a health care power of attorney; or

(ii) the individual”s health care agent is not reasonably available or has indicated an unwillingness to act and no alternate health care agent is reasonably available; and

(4) a guardian of the person to make health care decisions has not been appointed for the individual.

1-4.3 Authority of Health Care Representative.88

A representative”s authority, responsibilities, and decision-making process mirrors that of a health care agent. However, a representative may not decline health-care necessary to preserve life unless the patient is in an end-stage medical condition or permanently unconscious.89

1-4.4 Who May Act as Health Care Representative.90

Act 169 should help ensure that qualified persons will have an available surrogate decision-maker.91 This should limit the need for resort to the courts.92 The Act specifies the methods for determining who is authorized to serve as representative:

(1) Designation by the Principal. An individual of sound mind may, by a signed writing or by personally informing the attending physician or the health care provider, designate one or more individuals to act as health care representative.

(2) Designation by Default.

If a higher priority decision maker is not reasonably available, the Act specifies that any member of the following classes, in descending order of priority, who is reasonably available, may act as health care representative:

(i) The spouse, unless an action for divorce is pending, and the adult children of the principal who are not the children of the spouse.

(ii) An adult child.

(iii) A parent.

(iv) An adult brother or sister.

(v) An adult grandchild.

(vi) An adult who has knowledge of the principal”s preferences and values, including, but not limited to, religious and moral beliefs, to assess how the principal would make health care decisions.

An individual may by signed writing, including a health care power of attorney, provide for a different order of priority of representatives. Note, however, that a writing is not required to appoint a representative or disqualify anyone from serving as representative.

Although a representative is appropriate only if an agent is not reasonably available, a principal of sound mind can inform a health care provider of the revocation of the power of attorney and appointment of a representative. This raises a concern that a compromised patient may be influenced to ill-advisedly undue well-considered advance planning.

There may be a change in representative when a person with higher priority becomes available. 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 with lower priority has previously assumed that authority.

(3) Disqualification93

An individual of sound mind may prohibit anyone from acting as their health care representative. This may be accomplished by a signed writing or by personally informing the attending physician or the health care provider.

Any member of any of the classes set forth in 20 Pa.C.S. § 5461(d) may petition the court to disqualify an otherwise eligible individual from serving as health care representative. This provision recognizes the concern that the default order of priority may not designate the most appropriate decision maker. In some cases a member having a lower priority might be better suited to serve as a health care representative because of that member”s relationship with the principal.94

(4) Limitation on Health Care Providers95

Unless they are related by blood, marriage or adoption, an individual”s attending physician or other health care provider may not serve as health care representative.

1-4.5 Resolution of Disagreements96

There can be more than one member of the class of persons who are eligible to serve as health care representative. Where more than one member of a class has assumed authority to act as a health care representative and agreement is not reached, the attending physician or health care provider may rely on the decision of the majority of the members of that class who have communicated their views to the attending physician or health care provider.

“If more than one member of a class assumes authority to act as a health care representative, the members do not agree on a health care decision and the attending physician or health care provider is so informed, 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.”

If the class is evenly divided, no decision is deemed made until the class resolves the disagreement. An individual having a lower priority may not act. For example, if the adult children are evenly divided, neither a parent nor an adult brother or sister may act as health care representative to make that decision. This subsection recognizes that the decision-making process is an evolving one.97

“If the members of the class of health care representatives are evenly divided concerning the health care decision and the attending physician or health care provider is so informed, an individual having a lower priority may not act as a health care representative. So long as the class remains evenly divided, no decision shall be deemed made until such time as the parties resolve their disagreement. Notwithstanding such disagreement, nothing in this subsection shall be construed to preclude the administration of health care treatment in accordance with accepted standards of medical practice.”

1-4.6 Communication with other Family98

A representative is required to communicate to other family members who can be readily contacted of the representative”s assumption of the authority to act. The class of persons who are to be notified are those persons specified in 20 Pa.C.S. § 5461(d):

(i) The spouse, unless an action for divorce is pending, and the adult children of the principal who are not the children of the spouse.

(ii) An adult child.

(iii) A parent.

(iv) An adult brother or sister.

(v) An adult grandchild.99

No particular form of communication is specified.

1-4.7 Countermand100

The Act permits the principal to countermand individual health care decisions made by the health care representative. This parallels the right of countermand under a health care power of attorney.

(1) A principal of “sound mind”101 may countermand any health care decision made by the principal”s health care representative at any time and in any manner by personally informing the attending physician or health care provider.

(2) Regardless of the principal”s mental or physical capacity, a principal may countermand a health care decision made by the principal”s health care representative that would withhold or withdraw life-sustaining treatment at any time and in any manner by personally informing the attending physician.

The attending physician or health care provider is required to make reasonable efforts to promptly inform the health care representative of a countermand. A countermand does not affect the authority of the representative to make other health care decisions.

1-4.8 Written Declaration of Representative102

The Act permits a health care provider to require a written declaration from the person asserting the authority to act as health care representative which states facts and circumstances reasonably sufficient to establish the claimed authority. However, this subsection of the Act is not intended to impose a duty on a physician or health care provider to investigate the qualifications of the health care representative or to search for a health care representative.103

Prudent health care providers will likely require the representative to sign an acknowledgment of the representative”s relationship to the principal, and the lack of reasonable availability, to the best of the representative”s knowledge, of a person of higher priority.104

1-5 Duties and Protection of Health Care Providers

1-5.1 Duties of Providers105

The Act sets forth various duties imposed on attending physicians and other health care providers in regard to advance directives. Many of these are set forth in Section 5462.

(a) Duty to certify end-stage medical condition. The attending physician must promptly provide written certification of a determination that a patient has an end-stage medical condition or is permanently unconscious.

(b) Communication of Decisions. Decisions made by agents and representatives must be communicated promptly to the principal. This requirement must be observed if the principal is to have an opportunity to countermand the decision. It is designed to preserve patient autonomy.106107

(c) Compliance with decisions by agents and representatives. Subject to any limitations set forth in the principal”s advance directive, health care providers must comply with health care decisions made by agents and representatives to the same extent as if the decision had been made by the principal. However, health care necessary to preserve life shall be provided to an individual who has neither an end-stage medical condition nor is permanently unconscious, except if the individual is competent and objects to such care or a health care agent objects on behalf of the principal if authorized to do so by the health care power of attorney or living will.108

(d) Medical Record. The health care power of attorney and any amendment or revocation of it must be made part of the principal”s medical record.

(e) Record of Determination. The Act requires that a determination that the principal is unable or has regained the ability to make and communicate health care decisions be entered in the principal”s medical record and that the principal and health care agent be informed of the determination.

In addition, health care providers are subject to:

∙ the notification and transfer requirements of Section 5424;

∙ the pregnancy provisions of Section 5429;

∙ the living will requirements of Section 5443;

∙ the revocation provisions of Section 5444;

∙ making competency determinations under Section 5454;

∙ the restriction of Sections 5455(b) and 5461(f) limiting service as agent or representative;

∙ responsibilities in regard to life-sustaining treatment decisions by agents and representatives under Section 5456(c).

Health care providers might also take note of the Act”s legislative findings regarding the importance of providers initiating discussions with patients regarding end-of life planning.109

1-5.2 Protection of Providers

The Act employs a “good faith” standard to protect provides from any form of liability for actions in regard to advance directives, health care agents, and representatives.110 The term “good faith” is not defined.

1-6 Out-of-Hospital Do-Not-Resuscitate Orders

1-6.1 Overview

A do-not-resuscitate (DNR) order is a medical order written by a patient”s attending physician that directs medical personnel to forgo cardiopulmonary resuscitation (CPR)111 if the patient”s heart or breathing stops.

There are several varieties of DNR orders. The traditional DNR order is given by the doctor of a hospital in-patient directing that resuscitation not be performed in the event that the patient”s heart or breathing stops. The order, sometimes referred to as a “no code” or “comfort care,” is usually placed on the patient”s chart. A second variety of DNR which gives similar instructions for non-institutionalized individuals is the Out of Hospital Do-Not- Resuscitate order.

These documents are a unique form of advance directive. They are physician treatment orders.

CPR can be inappropriate for terminally ill patients who have made the decision that they do not want to prolong the process of dying.112 But, a patient”s desire to forgo CPR has been difficult to enforce when the patient does not reside in an institutional setting. Well-meaning family members and other caregivers tend to call 911, drawing the response of an emergency medical services ( EMS ) team, which is trained to provide CPR and has no time to investigate the patient”s circumstances.

In 2002, Pennsylvania enacted the Do-Not-Resuscitate Act113 (Chapter 54A) to deal with such out-of-hospital situations and to provide a means for non-hospitalized, but terminally ill patients to ensure that their choices regarding end-of-life care are honored by EMS personnel. It empowered terminally ill persons (or their surrogate decision makers) to obtain an out-of-hospital do not resuscitate order, bracelet or necklace that directs that EMS personnel not provide CPR in the event of cardiac or respiratory arrest.

Act 169 deletes Chapter 54A in its entirety and replaces it with Chapter 54 Sections 5481-5488.114 However, the regulations adopted under the former Chapter 54A remain effective unless they are inconsistent with the new Chapter 54 or until they are superceded by regulations promulgated by the Department of Health.115

1-6.2 Orders, bracelets and necklaces116

A patient who has an end-stage medical condition or is permanently unconscious and who chooses (or whose authorized surrogate chooses) to forego CPR can obtain an approved order and bracelet or necklace to alert EMS personnel that CPR should be withheld in the event of cardiac or respiratory arrest. An out-of-hospital DNR order can be issued only by the patient”s attending physician.

The order must be signed by the attending physician and patient (or surrogate)117 and must follow certain requirements set forth in Section 5484. The Department of Health is directed to create standard form orders, bracelets and necklaces.

Even though a terminally ill patient already has an advance health-care directive that declines CPR, they may wish to take the added step of requesting an out-of-hospital DNR order and bracelet or necklace. EMS personnel are trained to look first for the bracelet or other approved DNR direction before commencing CPR.

1-6.3 Revocation118

If a patient has obtained an order, only the patient may revoke the patient”s DNR status. If a surrogate has obtained an order, either the patient or the surrogate may revoke the patient”s status. Revocation may be done at any time, without regard to the patient”s physical or mental condition, and in any manner, including verbally or by destroying or not displaying the order, bracelet or necklace.

1-6.4 EMS Compliance119

Even in the absence of an order, bracelet, or necklace, EMS personnel must comply with instructions of their authorized medical command physician to withhold or discontinue resuscitation. If made aware of an order, bracelet, or necklace EMS personnel are to examine it and comply. Compliance means to withhold or discontinue CPR. EMS personnel must also comply with orders, bracelets, or necklaces issued by another state if the criteria for their issuances are consistent with Pennsylvania law.

1-7 Example Advance Directive Form

An advance health care directive may be in any written form that contains the information required by Act 169 regarding living wills and health care agents.120 The Department of Health cannot prescribe a mandatory form.121 A living will and health care power of attorney may be combined in one document.122

Section 5471 provides an example of an advance directive that combines a living will with a health-care power of attorney. The use of the example form is optional.123

Should you use the Section 5471 example form in preparing advance directives for your clients? While including an example form in the legislation, the drafters made clear that any form should be no more than a starting point in the drafting process. The Joint State Government Commission”s comment on Act 169”s predecessor legislation is instructive.

Comment: There is no prescribed or preferred health care

power of attorney form because the health care power of

attorney should be tailored to meet the principal”s individual

circumstances. A health care power of attorney may be

adapted so that the principal may provide for the following,

available under this chapter: (1) the designation of successor

health care agents, (2) the ability of multiple health care agents

to act together, (3) a health care power of attorney that is

effective immediately, (4) a health care power of attorney that

terminates at a certain time and (5) most important, particular

choices about health care, including life-sustaining treatment.124

The Joint State Government Commission was particularly critical of the living will declaration form which was included in the original Chapter 54:

“The form set forth in former section 5404(b) provided a

checklist of treatment options. However, the checklist tended

to invite a declarant to engage in self-diagnosis by choosing

future treatment options without fully considering the medical

consequences of those choices. A declaration could be made

long before the onset of a serious illness that would effectuate

the declaration, thereby potentially making the declaration

counterproductive to the declarant. In addition, the checklist

failed to recognize that medical treatment could be merely lifesustaining in one instance but beneficial in another. For

example, surgery, one of the check-off categories, is sometimes

appropriate to make an individual with a terminal condition

more comfortable. However, an individual who used the form

and checked off surgery as a treatment option removed

surgery as a beneficial treatment option, perhaps without truly

understanding the potential consequences.”125

Legislatures authorize statutory health directive forms in the hope of increasing the number of individuals who will execute a directive. The hope is that the existence of a form in the state will make advance directives available to consumers at little or no cost. The user does not have to seek assistance from a lawyer or consult a health care or social service professional.

In addition to the example advance health care directive form included in Act 169, there are many other form advance directives available.126 Forms can be good starting points.

However, numerous medical and social science studies suggest that even when advance directives are in place they often fail to appropriately direct care because: (1) the directives don”t provide much guidance; (2) the principal didn”t understand the form he/she signed; (3) the agent doesn”t understand the principal”s wishes; (4) health care providers don”t know about or fail to consult or misinterpret the document.127

If the goal is to help ensure that the client gets the care, especially the end of life care, they would desire under currently unknown future circumstances, then the lawyer needs to do more than prepare a document.

To enhance our clients” personal autonomy and increase the likelihood that their goals and values will be respected in the event of incapacity, the lawyer needs to help clients embark upon the advance planning process.

“Advance Directives are not worth the paper they are written on. They are only worth the discussion they are based on! Public policy has traditionally encouraged the use of standardized forms. But good planning is in the process. What”s a counselor to do? Remember that, ultimately, the advance directive document is intended to assist and supplement discussion among client, providers, and family. It should not replace such discussion. Good health care decision-making requires ongoing communication and reflection, before and after an advance directive is executed.”128

The preparation of an individualized advance directive is an important step, but it is only one step in what needs to be an evolving process of planning. “Advance Planning is a Process, not an Event and not a Document.”129

The lawyer can use the consultation with the client as an initiation point for that process.

1-8 POLST130

Act 169 requires the Department of Health to establish a committee to assist it in determining the advisability of using a standardized form containing physician orders detailing the scope of life-sustaining medical treatment to be provided to patients. These orders are commonly referred to as POLST – physican-order-for-life-sustaining treatment.

“[T]he wishes expressed by an advance directive may in some cases not be honored due to the unavailability of completed forms or a health care professional”s inability to quickly translate the language of the document into orders for treatment of specific medical conditions. Health care professionals caring for persons in various settings may in good faith initiate or withhold treatments that are medically not indicated or contrary to the desires of the person. The Physician Orders for Life-Sustaining Treatment (POLST) and similar forms are designed to help health care professionals honor the treatment wishes of their patients.”131

“POLST orders provide for continuity of DNR and other life-sustaining treatment orders from one setting to another, such as when a patient is transferred from a nursing facility to a hospital or vice versa.”132 The physician”s POLST order is transferred with the patient when the patient moves to a new health care delivery setting which helps assure that the patient”s end-of-life decisions are honored in the new setting. Because the POLST is in a standardized and unique format and is already signed by a physician, it is capable of being implemented at once by any clinician who encounters it. As a result, the POLST form of instruction directive has shown high rates of compliance and effectiveness.133

“The POLST is a concise form containing specific medical instructions that can be acted on immediately by nurses, doctors, or emergency personnel; it may include “do not resuscitate” and “comfort measures only” orders, and it may indicate whether to administer CPR (cardio-pulmonary resuscitation), antibiotics, intravenous fluids, feeding tubes, artificial respiration, and other medical interventions. Unlike the living will, the POLST governs medical issues that are considered very likely to arise in the near term. According to its developers, it is really only suitable for those expecting to die within the year.”134

Even without the encouragement of Act 169, the POLST program movement has been spreading in Pennsylvania and throughout the nation.135 For more information about POLST see https://www.polst.org.

1-9 General Provisions of Act 169

Sections 5421 through 5434 of Act 169 contain generally applicable definitions and provisions. These include:

5421. Applicability.

5422. Definitions.

5423. Legislative findings and intent.

5424. Compliance.

5425. Conflicting advance health care directives.

5426. Death not suicide or homicide.

5427. Life insurance.

5428. Health care instruments optional.

5429. Pregnancy.

5430. Effect of divorce.

5431. Liability.

5432. Criminal penalties.

5433. Forms.

5434. Construction.

2-1 Mental Health Declarations and Powers of Attorney136

2-1.1 Overview

Advance health care planning can provide special benefits for people with mental illness. It may enable them to have greater control of their treatment, may provide important information to guide health care providers in making treatment decisions, may reduce the need for formal court adjudications of treatment, and may reduce the costs associated with involuntary care. Written advance directive instruments may also have significant therapeutic value and play a role in the recovery process by allowing an individual to take responsibility for and control of his or her mental health treatment.137

Act 194 of 2004 authorizes individuals who are age 18 or older or an emancipated minor to draft Mental Health Care Advance Directives (MH-AD).138 These directives, sometimes referred to as psychiatric advance directives, provide individuals with mental health illnesses the opportunity to give or withhold consent to mental health treatment in advance of when the treatment may be needed.

2-1.2 What is a Mental Health Care Advance Directive

A Mental Health Advance Directive (MH-AD) is a written document that expresses a capable individual”s choices for treatment related to mental health care in the event that mental illness makes them unable to make decisions.

“Many decisions may need to be made for you if you have a mental health crisis or are involuntarily committed and become unable to make treatment decisions. For example, the choice of hospital, types of treatment, and who should be notified are decisions that may be made for you.

Unfortunately, at the time of crisis, you may not be able to make your wishes known, and therefore you may end up with others making decisions that you would not make. One way to be sure that your doctor, relatives, and friends understand your feelings is to prepare a Mental Health Advance Directive before you become unable to make decisions. Pennsylvania law allows you to make a Mental Health Advance Directive that is a declaration, a power of attorney, or a combination of both.”139

There are two basic forms of MH-AD: Declaration and Mental Health Power of Attorney.

2-1.2.1 Declaration.

A “Declaration” expresses the declarant”s wishes instructions for mental health care140 treatment. It may contain other specific directions, such as:

∙ The mental health treatment facility to which the declarant would prefer to be admitted;

∙ Preferences regarding medications for psychiatric treatment;

∙ Preferences regarding electroconvulsive therapy (ECT);

∙ Preferences for experimental studies or drug trials;

∙ Additional instructions or information. Examples of other instructions or information that may be included: Activities that help or worsen symptoms. Type of intervention preferred in the event of a crisis. Mental and physical health history. Dietary requirements. Religious preferences. Temporary custody of children. Family notification. Limitations on the release or disclosure of mental health records.

∙ Other matters of importance.

2-1.2.2 Mental Health Power of Attorney

A “mental health power of attorney” designates an individual to make mental health care decisions for the principal.141 The power of attorney can include a statement of the principal”s instructions and preferences such as those listed above.

2-1.3 Who can execute a “Mental Health Advance Directive.”142

An individual who is at least 18 years of age or an emancipated minor and has not been deemed incapacitated143 or severely mentally disabled,144 may make an MH-AD governing the initiation, continuation, withholding or withdrawal of mental health treatment and the appointment of an agent.

Individuals are presumed capable of making mental health decisions, including the execution of a mental health declaration or power of attorney, unless they are adjudicated incapacitated, involuntarily committed or found to be incapable of making mental health decisions after examination by a psychiatrist and one of the following: another psychiatrist, psychologist, family physician, attending physician or mental health treatment professional. Whenever possible, at least one of the decision makers shall be a treating professional of the declarant or principal.145

2-1.4 Execution Requirements.146

A MH-AD must be:

(1) Dated and signed by the declarant/principal by signature or mark or by another individual on behalf of and at the direction of the declarant/principal.

(2) Witnessed by two individuals, each of whom must be at least 18 years of age.

(A) An individual who signs a declaration on behalf of and at the direction of a declarant may not witness the declaration.

(B) A mental health care provider and its agent may not sign a declaration on behalf of and at the direction of a declarant if the mental health care provider or agent

provides mental health care services to the declarant.

2-1.5 Criteria for Operation.147

A MH-AD becomes operative when:

(1) A copy is provided to the attending physician.

(2) The conditions stated in the power of attorney are met.

As with other forms of advance directive, MH-ADs are generally “springing;” they become operational at a future time upon the happening of a specific event described in the document. With an MH-AD that event may be a determination that the declarant/principal is incapable of making mental health care decisions. However, it can be another condition as described in the document.148 In any event, the document should contain clear criteria under which it will become operational.

2-1.6 Time Limits on Validity

Individuals must execute or amend their declarations or mental health powers of attorney every two years; however if a person is incapable of making mental heath care decisions at the time the document would expire, the document remains in effect to be reviewed at the time when the person regains capacity.14

2-1.7 Forms

Section 5808 of the statute contains a combined Mental Health Care Declaration and Mental Health Power of Attorney Form. A copy of this form can be found in the Appendix to this chapter.

3-1 Preparing Advance Directives After Act 169

3-1.1 Advance Care Planning: A Process not a Form

To be most effective, advance care planning must be a process, of which the preparation of an advance directive document is only one step.

“The limits of controlling one”s own future does not mean that individuals and families should not plan for the future together. The shortcomings of living wills should not obscure the real advantages, both to the patient and to his family, of thinking ahead about some of the dilemmas that might arise as one”s capacities diminish, through conversation and prudent planning before an illness like dementia takes its course. Such conversation might focus not so much on the specific medical treatments a patient would or would not want as on other aspects of aging and dying that might matter even more to the person: for example, being steadily cared for during the long period of illness, having the company of one”s family and friends at the end, making peace with God, having a chance to say good-bye to a particular person, dying in a quiet and dignified setting, sparing one”s family additional anguish, and other considerations not strictly medical. Is the patient concerned more about pain at the end of life or about loneliness? About mental deterioration or about physical dependency? What are his deepest fears, what are her fondest hopes? Knowing how the person feels about these matters, at a stage of life when true collaboration is still possible, can give both guidance and comfort to family members who must eventually make wrenching decisions for the patient, including in many cases the decision to stop treatment and accept death.

Such conversations do not make the decisions, of course, but enrich the perspective of the decisionmakers. For in the end, the best laid plans always require devoted and prudent caregivers, who know what it means to benefit the lives of those in their care, and who possess the character to care well even in the darkest times.”150

When end-of life decisions are made, the law is seldom the determining factor. The limiting of life-sustaining treatment occurs in hospitals and nursing facilities throughout the country on a day to day basis. The American Hospital Association estimated in its brief in the Nancy Cruzan case that between 1976 and 1990 about 15 million people died in hospitals when life support was discontinued, withheld or limited in some fashion. During the same period of time it was estimated that approximately 4000 to 6000 cases were brought in the courts of this country on right to die issues. That represents only a minute fraction (0.0003) of the decision making situations.

As lawyers, we can recognize that while Act 169 and court decisions are helpful in determining right to die issues, the vast majority of decisions are made without resort to the courts or consideration of the legalities of the situation. Help your client understand the importance of talking with family and potential caregivers, especially the designated agent, about end of life issues.151

3-1.2 A Few Advance Directive Drafting Considerations

3-1.2.1 Choice of Agent

Usually the most important decision to be made by the principal is the choice of an agent. “The real job description should read: ”assertive advocate who understands my values and wishes and who will steadfastly pursue them despite opposition.””152

In advising clients about this choice, the lawyer may wish to consider the following kinds of criteria:

(1) Availability.

(2) Reliability.

(3) Willingness to serve.

(4) Advocacy skills.

(5) Ability to Understand Medical Issues.

(6) Understanding of and respect for the Principal”s values.

Clients frequently want to appoint may wish to appoint two or more persons to serve as co-agents. Most commentators feel that this should be discouraged. “One “ultimate” authority would ideally be named. Suggest drafting a provision that allows others to be consulted during decision-making processes when possible and appropriate.”153 Appoint other chosen family members as alternates (successor agents) in case the primary agent is unavailable.

The best choice of agent will know the principal well and be willing to engage now in difficult conversations about sensitive end of life issues. The ideal agent will be comfortable with the responsibility, able to deal with any potential family conflicts, and be a strong advocate for the principal.154

Name a successor agent, if the primary agent is unavailable to serve. Consider how much discretion to give to the agent. If there is a conflict between the principal”s instructions in the directive, and the agent”s decision, specify which will prevail.155

3-1.2.2 Including Treatment Instructions.

Act 169 does not require that a health care power of attorney include any instructions regarding the principal”s treatment preferences. However, it may be prudent to include at least some limited end of life directions.

Of particular importance is the inclusion of a direction regarding the authorization to withhold or withdraw nutrition and hydration.

Act 169 creates a presumption that the principal does not want nutrition and hydration withdrawn. “In the absence of a specific, written authorization or direction by a principal to withhold or withdraw nutrition and hydration administered by gastric tube or intravenously or by other artificial or invasive means, a health care agent shall presume that the principal would not want nutrition and hydration withheld or withdrawn.”156

Also consider including an instruction to ensure maximum pain control and comfort.

Including specific instructions may also help ensure that the principal considers the range of potential treatments, and may become especially valuable in the event that the agent is unavailable. It provides the opportunity to discuss and document any issues about which the principal feels especially strong. And it gives guidance to the agent. Be sure that instructions cannot be read as limitations unless that is intended.

Health care powers of attorney, living wills, do-not-resuscitate orders, and mental health advance directives are all tools that we can use to maintain some control over important health care decisions that are made for us. They are most effective when combined with communication with family and health care providers as part of an ongoing advance care planning process.

Jeffrey A. Marshall

January 2007

2Act 169-2006 (SB 628). A copy of the advance directives portions of Act 169 is available online on the author”s website at https://www.paelderlaw.com/pdf/SB_628.pdf.

3 20 Pa.C.S. § 5446.

4 20 Pa.C.S. § 5464.

5 20 Pa.C.S. § 5461.

6 See, Jeffrey A. Marshall , “Study Gives PA Poor Marks For End of Life Care,” The Elder Care Law Alert, January 4, 2003 , www.paelderlaw.com.

7 Memorandum of Senator Stewart Greenleaf to other Senators dated October 13, 2006 regarding the history of SB 628.

8 See discussion in Robert B. Wolfe, “The Impact of ACT 169 on Patients and their Families, and the Health Care Providers and the Family Attorneys Who Serve Them” Personal Health Care Decision Making in Pennsylvania: An Analysis of Act 169, PBI Pub. No. 2007-4816T – page 129 (“Important caveats under Legislative Findings Not exactly correct”).

9 The principal has the ability to vary the operative event(s). For example, the principal may authorize the health care agent to act even though the principal is competent. 20 Pa.C.S. § 5454.

10 Adapted from a form originally developed by the Allegheny County Medical Society and Allegheny County Bar Association in 1994.

11 Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), p 56.

12 The author personally avoids use of the term “living will” in connection with advance directives he prepares. Health providers can misunderstand what it means to have a “living will.” Some may assume that it means “send me on my way” without ever reading the document. (Unfortunately, it may also become an excuse for a reduction in care). Thus the author is concerned that classification as a “living will patient” can actually lead to a lessening of patient autonomy and care. Even if the intended message was “send me on my way,” when the living will was signed, an individual”s philosophy towards end-of-life care can change with time and circumstances. What is needed is discussion at the time the circumstances are known. Being known as someone who has a “living will” may discourage this discussion. This is not to say that clients should not have advance directives – they should. It just means to be careful when using the much misunderstood term “living will.”

13 The Pennsylvania Advance Directive for Health Care Act, Act No. 24 of 1992.

14 20 Pa.C.S. § 5442(a).

15 See the discussion of the capacity to make health-care decisions in the President”s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decision, Vol. I (1982); See, also, Regan, Tax, Estate & Financial Planning for the Elderly, § 14.04[1].

16 “The execution requirements for a health care power of attorney are the same as those for a declaration [living will] under section 5404(a) (execution of declaration). There is a presumption of sound mind to execute a health care power of attorney, absent clear evidence to the contrary. A health care provider, in good faith, can rely on the presumption of a principal”s sound mind.” Joint State Government Commission March 1998 Report, “A Health Care Decision-Making Proposal,” page 31.

17 20 Pa.C.S. § 5442(b).

18 20 Pa.C.S. § 5442(c). This limitation is rather oddly placed under the heading “Witnesses.”

19 20 Pa.C.S. § 5442(c).

20 20 Pa.C.S. § 5443(a).

2120 Pa.C.S. § 5422.

22 20 Pa.C.S. § 5422. The Act defines a “health care provider” as a “person who is licensed, certified or otherwise authorized by the laws of this Commonwealth to administer or provide health care in the ordinary course of business or practice of a profession. The term includes personnel recognized under the Act of July 3,1985 (P.L. 164, 25 No.45), known as the Emergency Medical Services Act.” 20 Pa.C.S. § 5422. But apparently, only the attending physician can make the determination of incompetency needed to activate a living will.

2320 Pa.C.S. § 5422. The Act replaces the prior law”s use of the term “terminal condition” with the term “end-stage medical condition” while keeping the substance of the definition the same and clarifying the definition of “end-stage medical condition” to ensure that an individual”s wishes are followed and that the individual receives medical care if the individual would benefit from the treatment and it would not merely prolong the process of dying. Memorandum of Senator Stewart Greenleaf to other Senators dated October 13, 2006 regarding the history of SB 628.

24 20 Pa.C.S. § 5422.

25 See, A. Fagerlin & C. Schneider, “Enough: The Failure of the Living Will,” 34 The Hastings Center Report 30-42 (March-April 2004).

26 20 Pa.C.S. § 5443(b).

27 20 Pa.C.S. § 5424.

28 20 Pa.C.S. § 5431(a).

29 20 Pa.C.S. § 5443(f).

30 20 Pa.C.S. § 5443(d).

31 20 Pa.C.S. § 5434.

32 20 Pa.C.S. § 5444(c).

33 20 Pa.C.S. § 5443(g). The Act has removed the prior law”s requirement that after the diagnosis, the attending physician must arrange for a physical examination and confirmation of the condition by a second physician. In practice, this requirement for confirmation by a second physician was frequently disregarded. However, the living will document itself may require a second opinion before it becomes operative.

34 20 Pa.C.S. § 5445(a).

35 20 Pa.C.S. § 5445(b).

36 20 Pa.C.S. § 5443(c).

37 20 Pa.C.S. § 5443(e).

38 20 Pa.C.S. § 5444.

39 20 Pa.C.S. § 5446.

40 20 Pa.C.S. § 5447.

41 “Football analogy for those who like sports analogies: Would you write a directive telling your team to punt on 4th down with long yardage? Such an instruction would in general be the right thing to do. But, it depends on a multitude of factors: How many yards to go? The score. The time left in the game. Who the opposition is. The ability of the quarterback. How rested the offensive line is. How the game has been going… etc. Turning to medical decision-making, the reality is that decisions and the variables involved are far more numerous and complex in the face of chronic and eventually fatal illness.” Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006 , page 7.

42 Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), pp 214-215 (emphasis in original).

43 Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), p 215 (emphasis in original).

44 Since 1982, the Pennsylvania Probate, Estates and Fiduciaries Code has authorized the appointment of an agent to make at least some health-care related decisions for a principal. But until the enactment of Act 169, the statutory provisions were extremely limited.

45 The American Bar Association Legal Guide for Americans Over 50 (2006), pp 107-108.

46 See the discussion of HIPAA below.

47 20 Pa.C.S. § 5456(c)(6).

48 20 Pa.C.S. § 5442(b).

49 20 Pa.C.S. § 5453.

50 20 Pa.C.S. § 5454.

51 45 CFR § 164.502(g)

52 20 Pa.C.S. § 5454(d).

53 Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006 , page 9.

54 20 Pa.C.S. § 5455.

55 20 Pa.C.S. § 5455(b).

56 20 Pa.C.S. § 5456.

57 20 Pa.C.S. § 5456(a).

58 20 Pa.C.S. § 5462.

59 Because of the Act”s use of the permissive “may” in describing the post-mortem authority of the agent regarding the principal”s remains, it is unclear whether this power devolves on the agent by default. The power of the agent to dispose of the principal”s remains may conflict with 20 Pa.C.S. § 305.

60 20 Pa.C.S. § 5456(a).

61 20 Pa.C.S. § 5456(c).

62 See Section 4-3.3.6.2.2 below.

63 For information on the Medical Care Availability and Reduction of Error (MCARE) Act see the Office of Mcare website, https://www.mcare.state.pa.us/mclf/site/default.asp.

64 20 Pa.C.S. § 5456(d)(1).

65 20 Pa.C.S. § 5456(d)(2).

66 20 Pa.C.S. § 5456(b).

67 20 Pa.C.S. § 5422.

68 20 Pa.C.S. § 5456(c)(4).

69 20 Pa.C.S. § 5456(c)(5)(iii)(A).

70 20 Pa.C.S. § 5456(c)(5)(iii)(B).

71 20 Pa.C.S. § 5456(c)(6).

72 20 Pa.C.S. § 5457.

73 Testamentary capacity is defined as whether a testator “has an intelligent knowledge regarding those who are the natural objects of his bounty, of what his estate consists, and of what he desires done with it…” Protyniak Will, 427 Pa. 524, 529, 235 A.2d 372, 375-76(1967). “Old age, sickness, distress or debility of body neither prove nor raise a presumption of incapacity. Nor will inability to transact business, physical weakness or peculiar beliefs and opinions. Failure of memory does not prove incapacity unless it is total and so extended as to make incapacity practically certain. A testator may not be able at all times to recollect the names of persons or families of those with whom he has been intimately acquainted. He may ask idle questions and repeat himself, and yet his understanding of the ordinary transactions of his life may be sound. He may not have the strength and vigor of a man able to digest all the parts of a contract, yet he may be competent to distribute his property by will.” Lawrence Estate, 286 Pa. at 65, 132 A.2d at 789 (1926).

74 20 Pa.C.S. § 5457(d).

75 20 Pa.C.S. § 5458.

76 See discussion above regarding concerns with the use of the term “sound mind.”

77 An amendment must be in a writing that has been executed in accordance with the provisions of section 5452.

78 20 Pa.C.S. § 5459(a).

79 Can an agent or provider ignore a revocation, if the agent or provider believes the principal is not of sound mind?

80 20 Pa.C.S. § 5460.

81 20 Pa.C.S. § 5460(b).

82 20 Pa.C.S. § 5460(a).

83 20 Pa.C.S. § 5460(c).

84 20 Pa.C.S. § 5464.

85 20 Pa.C.S. § 5461.

86 Suhl , J, Simons, P, Reedy, T, et al Myth of substituted judgment: surrogate decision making regarding life support is unreliable. Arch Intern Med 1994;154,90-96; Seckler, AB, Meier, DE, Mulvihill, M, et al Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991;115,92-98.

87 20 Pa.C.S. § 5461.

88 20 Pa.C.S. § 5461(c).

89 20 Pa.C.S. § 5461.

90 20 Pa.C.S. § 5461(d).

91

The Act does not.

92 “A health care decision made by a health care representative for a principal shall be effective without court approval.” 20 Pa.C.S. § 5461(j).

93 20 Pa.C.S. § 5461(e)

94 See the Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled “A Health Care Decision-Making Proposal, A Prudent Investor Rule and Other Proposed Amendments” (March 1998).

95 20 Pa.C.S. § 5461(f).

96 20 Pa.C.S. § 5461(g ).

97 See discussion of this section in the Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled, “A Health Care Decision-Making Proposal, A Prudent Investor Rule and Other Proposed Amendments” (March 1998).

98 20 Pa.C.S. § 5461(h).

99 The Act”s use of the term “family” in § 5461(h) could reasonably be read to imply that the representative does not need to notify priority class (vi) individuals – (vi) An adult who has knowledge of the principal”s preferences and values, including, but not limited to, religious and moral beliefs, to assess how the principal would make health care decisions.

100 20 Pa.C.S. § 5461(h).

101 See discussion of the concept “sound mind” in Section 4-3.3.7 above.

102 20 Pa.C.S. § 5461(k).

103 See the Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled “A Health Care Decision-Making Proposal, A Prudent Investor Rule and Other Proposed Amendments” (March 1998).

104 Pennsylvania Medical Society, “Advance Health Directives and Health Care Decision-making for Incompetent Patients, A guide to Act 169 of 2006 for physicians and other health care providers,” page 6.

105 20 Pa.C.S. § 5462.

106 See the Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled “Proposed Health Care Decision-Making Provisions Under Chapter 54 of Title 20 of the Pennsylvania Consolidated Statutes” (February 2002). https://jsg.legis.state.pa.us/HCPOA.PDF.

107 This section raises an interesting clinical question: “must a physician attempt to remove sedation and/or analgesia from a critically ill patient in an attempt to have that patient participate in, or at least be made aware of, a decision regarding withdrawal of support?” Mark R. Tonelli, MD, MA “Waking the Dying – Must We Always Attempt To Involve Critically Ill Patients in End-of-Life Decisions?” (Chest. 2005;127:637-642.)

108 The Act”s reference to “living will” in this section is curious. A living will is not operative for an individual who has neither an end-stage medical condition nor is permanently unconscious.

109 20 Pa.C.S. § 5423(c)(5)&(6).

110 20 Pa.C.S. § 5431(a)&(b).

111 CPR refers not only to one discrete intervention, but to a variety of procedures which may be used to restore and maintain circulation and respiration. Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006 , page 3.

112 See Legislative findings and intent, 20 Pa.C.S. § 5482.

113 20 Pa.C.S. Chapter 54A (§§ 54A01-54A13) now deleted in its entirety by Act 169 and replaced by 20 Pa.C.S. §§ 5481-5488.

114

Act 169-2006, Section 5; 20 Pa.C.S. §§ 5481-5488.

115 Act 169-2006, Section 6.

116 20 Pa.C.S. § 5484.

117 A “surrogate” is defined as a health care agent or representative. 20 Pa.C.S. § 5483.

118 20 Pa.C.S. § 5485(a).

119 20 Pa.C.S. § 5486.

120 20 Pa.C.S. § 5433(a)(1).

121 20 Pa.C.S. § 5433(a)(2).

122 20 Pa.C.S. § 5433(b).

123 The example form set out in Section 5471 is included in the Appendices to this Chapter.

124 Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled “Proposed Health Care Decision-Making Provisions Under Chapter 54 of Title 20 of the Pennsylvania Consolidated Statutes” (February 2002), page 49. https://jsg.legis.state.pa.us/HCPOA.PDF.

125 Joint State Government Commission Advisory Committee on Decedents” Estates Laws ” report entitled “Proposed Health Care Decision-Making Provisions Under Chapter 54 of Title 20 of the Pennsylvania Consolidated Statutes” (February 2002), page 39.

126 Here are some examples of other advance directive forms:

– Five Wishes Advance Directive. Can be purchased and downloaded from their web site: www.agingwithdignity.org.

– Shape Your Health Care Future with Health Care Advance Directives. Published jointly by the American Bar Association, the American Medical Association, and the American Association of Retired Persons. Available for free on the ABA web site at: www.abanet.org/elderly.

– The Medical Directive, by Linda L. Emanuel, M.D., and Ezekiel J. Emanuel, M.D. Can be purchased and downloaded from their web site: https://medicaldirective.org.

– Jehovah”s Witness” Advance Directive and DPAHC, available at: https://www.ajwrb.org/watchtower/durable.shtml and https://www.ajwrb.orWwatchtower/cud.shtml.

127 See Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006; Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), Chapter 2 – The Limited Wisdom of Advance Directives. See also, Journal of the American Geriatrics Society 45 (April 1997), “Do advance directives provide instructions that direct care?” by Joan Teno, M.D., Sandra Licks, Dr. Lynn, and others (pp. 500-507), “Advance directives for seriously ill hospitalized patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention, by Dr. Teno, Dr. Lynn, Neil Wenger, M.D., and others (pp. 508-512), and “The illusion of end-of-life resource savings with advance directives,” by Dr. Teno, Dr. Lynn, Alfred E. Connors, Jr., M.D., and others (pp. 513-518).]

128Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006, pg 8. (Emphasis in original).

129 Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006, pg 8. (Emphasis in original).

130 20 Pa.C.S. § 5488.

131 www.polst.org.

132 The Pennsylvania Medical Society Advance Health Care Directives and Health Care Decision-making for incompetent patients, a guide to Act 169 of 2006 for physicians and other health care providers, (2006), page 1. https://www.pamedsoc.org/.

133 Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), Chapter 2 – The Limited Wisdom of Advance Directives.

134 Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), Chapter 2 – The Limited Wisdom of Advance Directives.

135 “Advocates Praise PA. End-of-Life Law, But Want More Protections”, Pittsburgh Post-Gazette ( 12/04/06 ). “First developed a decade ago in Oregon and now in use in fifteen other states as well, a POLST document (unlike a standard living will) takes the form of a signed doctor”s order; it is not completed by the patient, but by a doctor or nurse-practitioner after consulting with the patient or his surrogate. The POLST is a concise form containing specific medical instructions that can be acted on immediately by nurses, doctors, or emergency personnel; it may include “do not resuscitate” and “comfort measures only” orders, and it may indicate whether to administer CPR (cardio-pulmonary resuscitation), antibiotics, intravenous fluids, feeding tubes, artificial respiration, and other medical interventions. Unlike the living will, the POLST governs medical issues that are considered very likely to arise in the near term. According to its developers, it is really only suitable for those expecting to die within the year.” Taking Care: Ethical Caregiving in Our Aging Society, The President”s Council on Bioethics, (2005), Chapter 2 – The Limited Wisdom of Advance Directives.

136 For a general discussion of Mental Health Advance Directives in Pennsylvania , Mental Health Association of Pennsylvania, “Mental Health Advance Directives for Pennsylvanians,” (2005). For a discussion of Mental Health Advance Directives from the health care provider”s perspective, including discussion of conflicts between directives and professional standards and their interaction with the Mental Health Procedures Act, see Pennsylvania Psychiatric Society, “Mental Health Declarations and Powers of Attorney,” January 2005. Information for Agents is discussed in Mental Health Association of Pennsylvania “Mental Health

Advance Directives Instructions and Responsibilities,Guide for Agents” (2005), https://www.mhapa.org/documents/MentalHealthAgents.pdf. A comprehensive national resource on Mental Health Advance directives is the National Resource Center on Psychiatric Advance Directives, https://www.nrc-pad.org/index.php.

137 See, Robert D. Fleischner,”Advance Directive for Mental Health Care: An Analysis of State Statutes”

https://www.napas.org/issues/advdir/Advance%20Directive%20for%20Mental%20Health%20Care.htm.

138 20 Pa.C.S. §§5801-5845. See also,”Pennsylvania Guidelines for Following Mental Health Advance Directives in State Mental Hospitals,” Commonwealth of Pennsylvania Mental Health and Substance Abuse Services Bulletin September 19, 2006 . https://www.mhanp.org/omhsas.guide.html.

139 Mental Health Association of Pennsylvania , “Mental Health Advance Directives for Pennsylvanians,” (2005) p4.

140 20 Pa.C.S. §5802. “Mental health care” is any care, treatment, service or procedure to maintain, diagnose, treat or provide for mental health, including any medication program and therapeutical treatment. 20 Pa.C.S. §5802.

141 20 Pa.C.S. §5802.

142 20 Pa.C.S. § 5822(a) [Declaration]; 20 Pa.C.S. § 5832(a) [Power of Attorney].

143 Pursuant to 20 Pa.C.S. §5511 (relating to petition and hearing; independent evaluation).

144 Pursuant to Article III of the act of July 9, 1976 (P.L.817, No.143), known as the Mental Health Procedures Act.

145 20 Pa.C.S. § 5807(a).

146 20 Pa.C.S. § 5822(b)-(c) [Declaration]; 20 Pa.C.S. § 5832(b)-(c) [Power of Attorney].

147 20 Pa.C.S. § 5824 [Declaration]; 20 Pa.C.S. § 5834 [Power of Attorney].

148 For example, when the declarant/principal exhibits certain symptoms or behavior, such as excessive credit card use in a patient with bipolar disorder. See, Pennsylvania Psychiatric Society, “Mental Health Declarations and Powers of Attorney,” January 2005, p 6.
149 20 Pa.C.S. § 5807(a).

150 President”s Council, pp 90-91.

151 Some lawyers give their clients a health care advance planning workbook to help them work through the process. Two examples are: The ABA Commission on Law and Aging”s “The Consumer”s Tool Kit for Health Care Advance Planning” which is available for free download at https://www.abanet.org.aging (a lawyers version is also available for purchase); and, “Caring Conversations Workbook,” published by the Center for Practical Bioethics, which can be downloaded for free from their web site: https://www.practicalbioethics.org/.
152 Sabatino, Effective Planning for Health Care Decision Making, ALI-ABA Elder Law Program, September 29, 2006, p 9.

153 Regan, Gilfix, Morgan and English, Tax, Estate & Financial Planning for the Elderly: Forms and Practice, (2005), Volume 2, p k-63.

154 ABA Commission on Legal Problems of the Elderly, “Lawyer”s Toolkit for Health Care Advance Planning,” Tool 1, page 1 (2000), www.abanet.org/elderly.

155 Act 169 requires an agent to “make health care decisions in accordance with the health care agent”s understanding and interpretation of the instructions given by the principal.” 20 Pa.C.S. §5456(c)(4). To give the agent maximum discretion, be clear that instructions in the document are only guidance and that the agent”s decisions prevail.

156 20 Pa.C.S. § 5456(C)(5)(III) (A).