On Nov. 30, 2006, Governor Rendell signed into law Act 169, which provides a comprehensive statutory framework governing advance health care directives and health care decision-making for incompetent patients.
Advance health care directives
The act uses the term advance health care directive to cover a living will, a health care power of attorney, or a combination document that incorporates features of both.
A living will is a written statement of the patient’s personal desires regarding life-sustaining treatment and other care.
A health care power of attorney is a written document in which the patient appoints another person to serve as the patient’s health care agent and make health care decisions for the patient.
When presented with an advance health care directive, health care providers must place a copy in the patient’s medical record.
Health care providers who are notified that a patient has revoked or amended an advance directive must likewise document the revocation or amendment in the patient’s medical record.
] Execution requirements
Generally speaking, only adults of sound mind may adopt an advance health care directive.
An advance health care directive must be:
- In a writing that is dated and signed (by signature or mark) by the patient or, if the patient is unable to sign, by an individual acting at the patient’s direction, and
- Witnessed by two individuals who are at least 18 years of age.
An advance health care directive does not have to be notarized. An individual who signs for the patient may not also be a witness.
Health care providers and their agents—including physicians and their office staff—may not sign an advance health care directive on behalf of a patient who they are treating.
Health care providers generally may assume that an advance directive presented to them was valid when made and has not been amended or revoked.
Advance directives executed under the prior law remain valid.
] Key definitions
Physicians must document in the patient’s medical record (i) when they determine that a patient is incompetent, and (ii) when they determine that a patient is permanently unconscious or has an end-stage medical condition.
These determinations are important because they impact whether a living will is operative and also may affect the authority of a health care agent or health care representative. See more details and important features of the “Act 169 Definition of Incompetent
- Incompetent generally means that the patient is not able to understand, make, and communicate health care decisions, even when provided appropriate information and aids.
- Permanently unconscious means a medical condition in which the patient has total and irreversible loss of consciousness and capacity for interaction with the environment, such as an irreversible vegetative state or an irreversible coma.
- End-stage medical condition means an incurable and irreversible medical condition in an advanced state caused by injury, disease, or physical illness that will result in death despite the introduction or continuation of medical treatment. (This term is defined similarly to “terminal condition” in the existing living will law. In the Medical Society's view, it better describes the qualifying conditions.)
Note that there is no maximum life-expectancy parameter in the definition of end-stage medical condition. For example, there is no requirement, as in some states, that the patient be expected to die within six months. The condition need only be “advanced.”
]Definition of incompetent
Act 169 makes a number of key improvements in the legal framework for health care decisions in the commonwealth.
|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 unable to: |
The term is intended to permit individuals to be found incompetent to make some health care decisions, but competent to make others.
- Understand the potential material benefits, risks, and alternatives involved in a specific proposed health care decision;
- Make that health care decision on his own behalf; or
- Communicate that health care decision to any other person.
New definitions for the terms “incompetent” (see sidebar) and “competent” are among the most important of these improvements.
Unlike other statutory definitions used for determining a person’s legal status related to the custody of his person or finances, the new definitions are designed to be a practical set of standards for use in a health care setting by individuals, families, and health care practitioners.
The Act 169 definitions have several important features.
First, in order to afford people the maximum level of control over their own lives, the Act 169 definitions limit an assessment of competency to a specific health care decision.
Unlike a legal competency determination in which there is a global finding, they recognize that people may be able to make some decisions but unable to make others. The new law permits people to make whichever decisions they can.
Next, the new definitions recognize that incompetence may be a transient phenomenon or a life-long situation or something in between. A practical definition of incompetence should be fluid and dynamic in order to protect individuals’ autonomy rights across the life spectrum and during evolving illnesses.
The new definitions also recognize certain pre-conditions to competence, such as being provided information in a way that can be understood.
As well, they acknowledge that determining competency is often a group effort involving family members, translators, lay educators, and health care practitioners who together assess whether the individual is able to make a particular decision.
Finally, the Act 169 definitions of incompetence and competence define three critical elements in sound health care decision making:
- Understanding the risks, benefits, and alternatives;
- Making a decision; and
- Communicating the decision to any other person.
If the ability to perform any of these decision elements is absent, the individual is incompetent to make that specific decision. When all three are present, the person is competent and his choice should be respected. Living wills
Living wills focus on life-sustaining treatment and other end-of-life care.
The Act generally defines life-sustaining treatment as treatment that merely prolongs the process of dying or maintains the patient in a permanently unconscious state.
A living will is not even operative (i.e., in effect) unless the patient is incompetent, and the patient has an end-stage medical condition or is permanently unconscious.
]Health care agents and representatives
A health care agent may be given authority as broad as the patient would have if competent.
In contrast to living wills, health care agents are not restricted to end-of-life decision-making.
Although health care agents generally are given authority only when the patient is incompetent, a health care power of attorney may vest an agent with authority even when the patient is competent.
A health care agent—when duly authorized—generally may direct the provision, continuation, withholding, or withdrawal of all forms of medical care from the patient.
Act 169 does not impose a requirement that the patient be permanently unconscious or have an end-stage medical condition for a health care agent to direct the withholding or withdrawal of health care necessary to preserve the patient’s life.
Generally speaking, a health care representative may make health care decisions for an incompetent adult patient who has no controlling living will, health care power of attorney, or guardian of the person.
Unless a patient designated otherwise, the patient’s health care representative will be determined by a statutory list that generally gives priority in the following order:
- spouse and adult child who is not the child of the spouse
- adult child
- adult sibling
- adult grandchild
- close friend
As in the case of a health care agent, a health care representative generally may direct the provision, continuation, withholding, or withdrawal of medical care including life-sustaining medical care.
In contrast to a health care agent, a health care representative may direct the withholding or withdrawal of care necessary to preserve life only when the patient is permanently unconscious or has an end-stage medical condition.
However, in most situations in which it is appropriate to direct the withholding or withdraw life-preserving medical care, the patient will be considered to be permanently unconscious or to have an end-stage medical condition.
Decision-making by health care agents and representatives
Health care providers are required to provide information to health care agents and representatives to aid them in their decision-making. The various state and federal privacy requirements generally will not restrict what may be disclosed.
Health care agents and representatives generally are required to make decisions for patients based upon the patient’s express wishes, the patient’s preferences and values, and the patient’s best interests, in that order of priority.
Modified rules apply to withholding or withdrawal of artificial nutrition and hydration. There is a “rebuttable presumption” that the patient would want this treatment in the absence of the patient specifically stating otherwise in writing. Generally speaking, the presumption may be overcome if the patient clearly expressed wishes to the contrary or it is clear from the patient’s preferences and values that the patient would not want the artificial nutrition and hydration.
Hospitals and other health care facilities will need to adopt policies and procedures to implement the prescribed decision-making process for health care agents and representatives.
A direction to withhold or withdraw life-sustaining treatment generally does not prohibit the provision of comfort care or other beneficial care.
Special restrictions apply to withholding or withdrawing life-sustaining treatment from pregnant women.
The prescribed decision-making process for health care agents and representatives includes requirements to protect against discrimination of patients because of a disability.
Health care providers who, for reasons of conscience, object to the withholding or withdrawal of life-sustaining treatment are not required to comply if they provide notice and take reasonable steps to attempt to transfer the patient to a willing provider.
Health care providers are not required to provide futile care, but physicians generally should not issue a DNR order without consent via a living will or a duly authorized health care agent or representative.