Pennsylvania Code
Title 55 - HUMAN SERVICES
Part VIII - Intellectual Disability and Autism Manual
Subpart A - Statements of Policy
Chapter 6000 - STATEMENTS OF POLICY
Subchapter R - PROCEDURES FOR SURROGATE HEALTH CARE DECISION MAKING
HEALTH CARE DECISION MAKING
Section 6000.1014 - Individuals who are not competent and who have either end-stage medical conditions or are permanently unconscious

Universal Citation: 55 PA Code § 6000.1014

Current through Register Vol. 54, No. 44, November 2, 2024

(a) Under Act 169, when a guardian, health care agent or health care representative will be making the decision, the attending physician determines whether an individual has an end stage medical condition or is permanently unconscious.

(b) In contrast, the MH/MR Act, which applies to health care decisions by facility directors, requires the advice of two physicians for recommended treatment of health care conditions, including end stage medical conditions.

(c) When a surrogate health care decision maker is needed to make a nonemergent health care decision for an individual who has an end-stage medical condition or is permanently unconscious and who has not executed a valid living will that governs the decision, the surrogate health care decision maker should be chosen in the following order:

(1) Health care agent. If the individual, while competent, has executed a valid advance health care directive that designates a health care agent and the health care agent is available and willing to make the decision, the health care agent should make health care decisions for the individual.

(2) Guardian of the individual's person.

(i) If, under Pennsylvania's guardianship statute, a court has already appointed a guardian of the person to make health care decisions on the individual's behalf, the guardian should make the decisions for the individual.

(ii) If a person who executed a valid health care power of attorney is later adjudicated an incapacitated person and a guardian of the person is appointed by the court to make medical decisions, the health care agent named in the health care power of attorney is accountable to both the guardian and the individual.

(iii) The guardian has the same power to revoke or amend the appointment of a health care agent as the individual would have if he were not incapacitated, but may not revoke or amend the instructions in an advance health care directive absent judicial authorization.

(3) Health care representative.

(i) In the absence of a health care agent designated under a valid advance health care directive or a court-appointed guardian of the person with authority to make health care decisions, an available and willing health care representative should make the health care decision.

(ii) In descending order of priority, the following individuals can act as health care representatives for individuals:

(A) A person chosen by the individual (in a signed writing or by informing the individual's attending physician) while the individual was of sound mind.

(B) The individual's spouse (unless a divorce action is pending).

(D) The individual's parent.

(E) The individual's adult brother or sister.

(F) The individual's adult grandchild.

(G) An adult who has knowledge of the individual's preferences and values.

(4) Facility director.

(i) In the absence of any other appointed decision maker or willing next of kin, the facility director in his discretion becomes the surrogate health care decision maker under section 417(c) of the MH/MR Act.

(ii) Section 417(c) of the MH/MR Act specifies that the facility director may authorize elective surgery, but the Department has consistently interpreted that section to recognize that the facility director's authority also encompasses health care decisions generally.

(iii) The facility director may authorize elective surgery and other treatment only with the advice of two physicians not employed by the facility.

(iv) When the facility director becomes the surrogate health care decision maker for an individual who has an end-stage medical condition or is permanently unconscious, the director shall first review the individual's support plan and relevant medical history and records to help identify the individual's medical status historically and immediately prior to making a surrogate health care decision.

(v) The facility director must be informed of the decision to be made and gather information based on the direct knowledge of those familiar with the individual.

(vi) In this manner, the facility director will have sufficient information to make the decision that the individual would make if able to do so.

(vii) For a decision to withdraw treatment or life-sustaining care for a person who is not competent who has an end-stage medical condition or is permanently unconscious, the Department recommends a facility director seek judicial authorization prior to the withdrawal of treatment or life-sustaining care due to a risk of conflict of interest claims.

(viii) For a DNR order for a person who is not competent who has an end-stage medical condition or is permanently unconscious, the Department recommends a facility director seek judicial authorization prior to requesting the issuance of a DNR order due to a risk of conflict of interest claims.

(ix) Pending the judicial authorization under subparagraphs (vii) and (viii), the Department recommends a facility director direct that treatment or life-sustaining care be continued for a person who is not competent who has an end-stage medical condition or is permanently unconscious.

(x) Even when another surrogate health care decision maker is identified, the facility director should continue to monitor the situation to ensure that decisions are made with the best interest of the individual as the paramount concern.

(xi) In the event of a short-term absence of the facility director, the director may assign a designee to perform these functions.

(xii) The assigned designee may only be a person authorized to perform the facility director's functions in the director's absence.

(d) In the rare circumstance that the individual with an end-stage medical condition or who is permanently unconscious does not have a living will, health care agent, court-appointed guardian, available and willing health care representative or facility director, then a court should appoint a guardian with authority to act. Appropriate medical care should be provided pending the appointment of a guardian.

(e) In reaching decisions about appropriate care, the following may be helpful:

(1) Holding a team meeting including the health care provider, the family/health care representative, the mental retardation service provider and any other interested parties to clarify the issues and each party's understanding of the situation.

(2) Involving the palliative care team, the patient advocate, or both, at a hospital to act as an objective party and help communicate issues and assist each party in understanding the situation.

(3) Using hospital ethics committees to review situations.

(4) Having a second medical or surgical opinion, which can sometimes clarify the prognosis or possible treatments for a particular condition.

(5) As a last resort, pursuing resolution through the courts.

Disclaimer: These regulations may not be the most recent version. Pennsylvania may have more current or accurate information. We make no warranties or guarantees about the accuracy, completeness, or adequacy of the information contained on this site or the information linked to on the state site. Please check official sources.

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