AIMEE'S BULLETIN
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Aimee's Bulletin
Pennsylvania Bulletin, dated January 15, 2011
SCOPE:
Administrative Entity Administrators or Directors
County Mental Health and Mental Retardation Administrators
Supports Coordination Organization Directors
Providers of Community Mental Retardation Residential Services
State Center Directors
NonState ICF/MR Directors
PURPOSE:
The purpose of this statement of policy is to clarify surrogate health care decision-making procedures applicable to individuals with mental retardation who are 18 years of age or older in light of Act 2006 - 169 (Act 169) (20 Pa.C.S. Chapter 54 (relating to health care)) and other applicable laws. The Department recognizes that it has no statutory authority to interpret Act 169 and the Department does not assume any liability that may arise from the application of these guidelines with respect to private providers. This statement of policy, therefore, is neither binding on such entities and does not offer protection against claims that may arise with respect to those entities.
Agencies are encouraged to consult their own legal counsel for advice on the implementation of the statutes discussed in this bulletin.
BACKGROUND:
When situations arise where a health care decision is necessary and an adult individual is not able to make that decision, then a decision must be made on that individual’s behalf. Bulletin 00-98-08, “Procedures for Substitute Health Care Decision Making”, issued on November 30, 1998, detailed the applicable standards for surrogate decision-making for individuals with mental retardation over the age of 18. Act 169
amended Pennsylvania’s law concerning advance health care directives and authorized “health care representative”(HCR) to make health care decisions for individuals who are not competent and do not have valid and applicable advance health care directives or court-appointed guardians of the person.
This statement of policy updates the Department’s interpretation of the laws and procedures for surrogate health care decision-making for individuals receiving mental retardation services through the Department under Act 169 and other applicable law.
DISCUSSION:
Act 169
State law and general standards of practice establish health care standards to which all individuals are entitled without discrimination. Individuals with mental retardation have the right to receive the same health and life-sustaining treatment as offered to individuals without disabilities.
Generally, health care can be provided only with the consent of the patient. There are, however, exceptions in emergencies or if the patient is incompetent to make health care decisions. If a patient is incompetent, a surrogate health care decision maker is authorized by Pennsylvania law to make health care decisions on behalf of the patient. Historically, there has been some uncertainty about who can serve as a surrogate health care decision maker, and the extent of the surrogate health care decision maker’s authority, particularly in doctors’ offices, clinics, and hospitals.
The autonomy of persons who have the capacity to make particular health care decisions as they arise should be respected. In the event that a health care decision becomes necessary, a reasonable effort should be made to explain the proposed course of action, any alternate options, and the risks and benefits for each to the individual prior to instituting a course of action. However, situations may arise where a health care decision is necessary and the individual, whether incompetent as defined by Act 169 or adjudicated incapacitated, does not have the capacity to make that decision. In such cases, a decision must then be made on that individual’s behalf by a surrogate health care decision maker, as identified in several state statutes.
Though Act 169 covers many aspects of health care, several other statutes also govern health care decision-making, and were not repealed by Act 169. Accordingly, they remain in effect. These statutes include the following:
- Title 18 Pa. C.S. § 2713 (relating to neglect of care-dependent person).
- Title 20 Pa. C.S. Chapter 55 (relating to incapacitated persons).
- The Medical Care Availability and Reduction of Error (MCARE) Act
- (40 P.S. §§1303.101–1303.115).
- Section 417(c) of the Mental Health and Mental Retardation (MH/MR) Act of 1966 (50 P.S. § 4417(c) (relating to powers and duties of directors)).
Mental Health and Mental Retardation (MH/MR) Act of 1966
For multiple reasons, § 417(c) of the MH/MR Act of 1966 (50 P.S. § 4417(c) (relating to powers and duties of directors)), survives Act 169:
1. Act 169 itself declares that “this chapter shall not impair or supersede any existing…responsibilities not addressed in this chapter.” 20 Pa. C.S. § 5421(b) (relating to applicability). In addition, Act 169 does not address the situation that § 417(c) does-- the identification of a surrogate health care decision maker for a resident of an MH/MR facility who has no other surrogate health care decision maker, not even a health care representative.
2. The prohibition in Act 169 on a health care provider’s being a HCR,
20 Pa. C.S. § 5461(f) (relating to decisions by health care representative), is not applicable to the facility director under § 417(c) because the facility director is made a guardian under § 417(c), not a HCR. While both guardians and HCRs are surrogate health care decision makers, the constraints specifically applicable to HCRs are applicable to them only. Act 169 does not affect the rules for the identification of guardians. There are policy justifications for the distinction. In ordinary nursing homes, the need for a facility director as an HCR is less because there will usually be others available, and the facility may have had only days or weeks of contact with the patient; therefore, a facility director would not likely be a good HCR. In contrast, at an Intermediate Care Facility for the Mentally Retarded (ICF/MR) or group home, some residents lack any involved family, thereby triggering the need for default surrogate health care decision makers. Facility staff in ICF/MRs and group homes have often known the residents for years or even decades, thereby becoming aware of the residents’ preferences, unlike the circumstance in the ordinary nursing home.
3. Section 417(c) of the MH/MR Act of 1966 (50 P.S. § 4417(c)) and Act 169 need to be read in pari materia. The plain purpose of both statutory provisions is to permit surrogate health care decision-making for incompetent individuals without the need to obtain a court order. If Act 169 were construed to repeal § 417(c) of the MH/MR Act of 1966, court orders would be required where no HCR existed, thereby defeating a principal purpose of Act 169 itself.
In addition, although § 417(c) of the MH/MR Act of 1966 explicitly references only “elective surgery,” § 417(c) should be read as applicable to health-care decisions generally. There are several reasons for this:
1. Section 417(c) was enacted at the dawn of the doctrine of informed consent, when only elective surgery was thought to require explicit informed consent. Consent to emergency surgery was (and still is) implied in law, and consent to routine medical procedures such as immunizations and x-rays was thought to be implied by the mere fact of the patient’s cooperation. See Fay Rozovsky, Consent to Treatment §1.10.1 (3d ed. 2000). See also Paul Appelbaum, et al, Informed Consent (1987). Even today in Pennsylvania, only a limited number of procedures require “informed consent,” see 40 P.S. §1303.504 (relating to informed consent) , but competent patients, or in the case of incompetent patients, their surrogate health care decision makers, are often expected in practice to “sign for” a wide range of procedures, whether informed consent is required by law or not. Because statutes are to be construed liberally to effectuate their purposes (with certain exceptions not applicable here), see 1 Pa. C.S. §1928(c) (relating to rule of strict and liberal construction), and because the obvious purpose of § 417(c) is to provide for a surrogate decision maker for medical decisions where such decision makers are needed, and to do so without petitioning a court, its scope must be read in light of its purpose.
2. Under the legal doctrine that “the greater power includes the lesser,” see, e.g., Griffin v. SEPTA, 757 A.2d 448 (Pa. Commw. 2000), the power to consent to “elective surgery,” for example, amputation of a leg with a malignant tumor, necessarily includes the power to consent to diagnostic procedures to determine the appropriateness of any such amputation. Similarly, the facility director’s authority under § 417(c) should be construed to include authority to make decisions regarding palliative and life-sustaining care for persons in an end-stage (terminal) condition.
3. Section 417(c) explicitly limits the facility director’s authority to decision-making after receiving “the advice of two physicians not employed by the facility”. This requirement, however, will rarely create a practical problem. For necessary care and treatment provided in the mental retardation facility itself, no consent from a surrogate is needed because 18 Pa.C.S. § 2713 (relating to neglect of care-dependent person) requires that necessary care and treatment be provided without such consent. For care outside the mental retardation facility, such as in a doctor’s office or hospital, the primary care physician and the specialist performing the procedure can serve as the two physicians (except in the rare circumstance where a primary care physician is a payroll employee of the mental retardation facility) as required under § 417(c).
GUIDELINE:
The guideline is contained in Annex A to this Bulletin.
EFFECTIVE DATE:
This statement of policy is effective immediately upon publication in the Pennsylvania Bulletin.
OBSOLETE BULLETIN:
This bulletin replaces and supersedes Bulletin 00-98-08, “Procedures for Substitute Health Care Decision Making”.
CONTACT PERSON:
Jill Morrow-Gorton, M.D.
Medical Director
Office of Developmental Programs
(717) 783-5661
ANNEX A
STATEMENT OF POLICY
DEPARTMENT OF PUBLIC WELFARE
OFFICE OF DEVELOPMENTAL PROGRAMS
[55 Pa.Code Chapter 6000]
Statements of Policy
Subchapter R. Procedures for Surrogate Health Care Decision Making
GENERAL PROVISIONS
§ 6000.1001. Scope.
Administrative entity administrators and directors, county Mental Health/Mental Retardation administrators, supports coordination organization directors and providers of mental retardation services may consider this statement of policy with respect to the decisions of surrogate health care decision makers identified under Pennsylvania law.
§ 6000.1002. Purpose.
The purpose of this statement of policy is to clarify surrogate health care decision-making procedures applicable to individuals with mental retardation who are 18 years of age or older in light of Act 2006 - 169 and other applicable law.
§ 6000.1003. Definitions.
The following words and terms, when used in this subchapter, have the following meanings, unless the context clearly indicates otherwise.
Act 169 — Act 2006 - 169.
Act 28 facility — A nursing home, personal care home, domiciliary care home, community residential facility, state-operated intermediate care facility for the mentally retarded, privately operated intermediate care facility for the mentally retarded, adult daily living center, home health agency or home health service provider whether licensed or not. 18 Pa.C.S. § 2713 (relating to neglect of care-dependent person).
Advance health care directive — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422). An advance health care directive is a signed and witnessed document which directs health care in the event that the individual (the principal) is incompetent and has an end-stage medical condition or is permanently unconscious. It also may designate a person to carry out the individual’s wishes regarding health care at the end of life.
CPR — Cardiopulmonary Resuscitation — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Competent — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422). Under Act 169, the attending physician determines competency.
Do not resuscitate order (DNR Order) — An order in the individual’s medical record that CPR should not be provided to the individual.
End stage medical condition — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Facility director —
(i) For those facilities that are MR facilities as defined in MH/MR Act, the facility director is the administrative head of a facility1.
(ii) In facilities licensed under 55 Pa.Code Ch. 6400 (relating to community homes for individuals with mental retardation), “facility director” means the Chief Executive Officer as per 55 Pa.Code § 6400.43 (relating to chief executive officer).
(iii) In facilities licensed under 55 Pa.Code Ch. 6500 (relating to family living homes), “facility director” means the Chief Executive Officer as per 55 Pa. Code § 6500.42 (relating to chief executive officer).
(iv) In intermediate care facilities for persons with mental retardation, the “facility director” means the administrator appointed under 42 C.F.R. § 483.410(a)(3) (relating to condition of participation: governing body and management).
(v) In facilities licensed under 55 Pa.Code Ch. 5310 (relating to community residential rehabilitation services for the mentally ill), “facility director” means the director selected under 55 Pa.Code § 5310.11 (relating to governing body).
(vi) In facilities licensed 55 Pa.Code Ch. 5320 (relating to requirements for long-term structured residence licensure), “facility director” means the program director selected under 55 Pa. Code § 5320.22 (relating to governing body).
Health care — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Health care agent — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Health care decision — The term as defined in § 4 of Act 169 (20 Pa.C.S.
§ 5422).
Health care power of attorney — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422). A health care power of attorney is the actual document declaring an individual to make health care decisions for the principal. The person designated in a health care power of attorney is sometimes referred to as the “health care agent”.
Health care provider — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Health care representative — The term as defined in § 4 of Act 169 (20 Pa.C.S.
§ 5422). In addition, Act 169 specifies the following limitation on designation of the health care representative: Unless related by blood, marriage or adoption, a health care representative may not be the principal’s attending physician or other health care provider, not an owner, operator or employee of a health care provider in which the principal receives care.
lncompetent — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Living will — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422).
Mental health advance directive — A document that directs mental health services and supports that an individual might want to receive during a crisis if the individual is unable to make decisions because of the individual’s mental illness. This is a separate document from an advance health care directive. See 20 Pa.C.S. Chapter 58 (relating to mental health care).
Permanently unconscious — The term as defined in § 4 of Act 169 (20 Pa.C.S.
§ 5422).
Person — The term as defined in 1 Pa.C.S. § 1991 (relating to definitions).
Principal — The term as defined in § 4 of Act 169 (20 Pa.C.S. § 5422). The principal is at least 18 years of age, has graduated from high school, has married, or is an emancipated minor.
Surrogate health care decision maker — A person that makes health care decisions for another individual.
HEALTH CARE DECISION MAKING
§ 6000.1004. Competent Individuals.
RECORDS
§ 6000.1021. Access to records.
Under the Health Insurance Portability and Accountability Act (HIPAA), guardians, agents or representatives as medical surrogates have the same access to medical records that the principal does. 45 C.F.R. §§ 164.502 (g) and 164.510 (b) (3) (relating to uses and disclosures of protected health information: general rules; and uses and disclosures requiring an opportunity for the individual to agree or to object).
STATUTES
§ 6000.1031. Applicable statutes.
Several other statutes also govern health care decision-making, and were not repealed by Act 2006 - 169. Accordingly, they remain in effect. These statutes include the following:
(1) Title 18 Pa. C.S. § 2713 (relating to neglect of care-dependent person).
(2) Title 20 Pa. C.S. Chapter 55 (relating to incapacitated persons).
(3) The Medical Care Availability and Reduction of Error (MCARE) Act (40 P.S. §§1303.101 – 1303.115).
(4) Section 417(c) of the Mental Health and Mental Retardation (MH/MR) Act of 1966 (50 P.S. § 4417(c) (relating to powers and duties of directors)).
§ 6000.1032. Applicability of 50 P.S. § 4417(c) to health-care decisions.
(a) Notwithstanding that 50 P.S. § 4417(c) (relating to powers and duties of directors) explicitly references only “elective surgery,” § 4417(c) should be read as applicable to health care decisions generally.
(b) A facility director’s authority under 50 P.S. § 4417(c) should be construed to include authority to make decisions regarding palliative care for persons in an end-stage (terminal) condition.
(c) For care provided in the mental retardation facility itself, no surrogate consent is needed because 18 Pa. C.S. § 2713 (relating to neglect of care-dependent person), requires that necessary care and treatment be provided without it.
(d) For care outside the mental retardation facility, such as a doctor’s office or hospital, the primary care physician (PCP) and the specialist performing the procedure can serve as the two physicians (except in the rare circumstance where the PCP is a payroll employee of the mental retardation facility) required under 50 P.S. § 4417(c).
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1 Mental Health and Mental Retardation Act of 1966, 50 P.S. §§ 4101-4704.
2 Health Care Act, 20 Pa.C.S. §§ 5422-5487
3 The Medical Care Availability and Reduction of Error (MCARE) Act, 40 P.S. §§ 1303.101 – 1303.1115. In re Dorone, 534 A.2d 452 (Pa. 1987).
4 Health Care Agents and Representatives Act, 20 Pa.C.S. §§ 5451-5465.
5 20 Pa.C.S. §§ 5501-5555, known as Guardianship Law.
6 Health Care Agents and Representatives Act, 20 Pa.C.S. § 5460(a) (relating to relation of health care agent to court–appointed guardian and other agents).
7 Health Care Agents and Representatives Act, 20 Pa.C.S. §§ 5451-5465.
8 Mental Health and Mental Retardation Act of 1966, 50 P.S. § 4417(c)(relating to powers and duties of directors).
9 Mental Health and Mental Retardation Act of 1966, 50 P.S. § 4417(c).
10 Mental Health and Mental Retardation Act of 1966, 50 P.S. § 4417(c).
11 Health Care Act, 20 Pa.C.S. §§ 5422, 5454(a)(relating to definitions; and when health care power of attorney operative).