Reactions Reported to Act 169

Robert Clofine, an experienced elder law attorney practicing in York, PA, recently addressed to me his concern about a key section of Act 169 of 2006. His message was posted on the member listserv of the Probate & Trust Law Division, of the Real Property, Probate & Trust Law Section, of the Pennsylvania Bar Association.

Recently, I responded to him personally by email and on that listserv.

Rob is concerned about the reasoning behind, and the implementation of, the following provisions of the new Act in Section 5456 (C) ("Authority of health care agent"):

(C) HEALTH CARE DECISIONS.

(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 OF 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, 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 P 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 THE 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 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.

(6) THE DEPARTMENT OF HEALTH SHALL ENSURE AS PART OF THE LICENSURE PROCESS THAT HEALTH CARE PROVIDERS UNDER ITS JURISDICTION HAVE POLICIES AND PROCEDURES IN PLACE TO IMPLEMENT THIS SUBSECTION.

Following was my response to Rob. It represents my personal views on the new provision:

What you identify clearly is a key new section of the Act. It was attained as a compromise from various positions of interested advocacy groups. Bob Wolf, of Pittsburgh, participated in those discussions, and will comment on the tension & the resolution during the PBI Call-In Conference now scheduled for January 16, 2007, from 12:30 to 1:30 pm.

[UPDATE: On 12/12/06, PBI extended the time to 2:00 pm, for a one & one-half hour Telephone Conference, which I previously described in PBI Announces Act 169 Call-In Course. See further course information & registration information on PBI's website here.]

This section can be better understood in the context of the health care decision-making that occurs on the spot in the medical facility. It is a complex issue.

See my post entitled PSU/Law & PSU/Med Symposium on "Quality of Life". I reference a "Toolkit" developed by a geriatric center affiliated with Brown Medical School that considers, in great detail, the various elements of "Quality of Life" as measured near the end of a life.

As lawyers, we got used to the simple checklist form that, in the actual circumstances of application, usually was worthless in providing guidance -- and even presented a hindrance -- in the view of physicians, caregivers, and hospice workers.

Act 169 reflects the more relevant elements of such an end-of-life decision, without becoming, in itself, an "assessment instrument". Such quantitative measures or procedures may be developed further through the Physician Ordered Life-Sustaining Treatment (POLST) order that the Act required be studied by a new task force.

Could the language in the section that you quote be better? Sure. But it passed. And hopefully, as experience is gained under the new law, it could be revisited for revision.

Already reactions to Act 169 of 2006 are reported by the press.

In an article that appeared on Monday, December 4, 2006, in the Pittsburgh Post-Gazette, available here, entitled "Advocates praise PA end-of-life law, but want more protections", by Gary Rotstein, reactions were reported from western-Pennsylvania physicians, caregivers, and other professionals, including Attorney Bob Wolf (who was quoted).

Advocates for better end-of-life care in Pennsylvania applaud a new law covering decision-making relating to it but say more steps are needed to protect terminally ill individuals from undesired, medically invasive treatment.

Gov. Ed Rendell last week signed legislation approved unanimously by both the House and Senate, updating state law on living wills and health care powers of attorney.

Perhaps most importantly, since the majority of people have neither of those advance directives when hospitalized, the new measure creates guidelines for treatment decisions involving such individuals. Health care providers, elder- law attorneys and others who assist seriously ill adults say such steps are important in aiding the comfort of people receiving late-life treatment. * * *

But more work is to be done, say officials involved in a Western Pennsylvania committee examining such issues. They are awaiting a statewide report that was expected to be released months ago on end-of-life care. They also hope the legislation will spur Pennsylvania to copy other states that encourage physicians and patients to jointly put late-life treatment preferences into writing.

"Many people don't know what their options are at end of life, so they end up with more care and service than they might have wanted," said Nancy Zionts, vice president of the Jewish Healthcare Foundation.

Participants in the legislation's development and on committees working on the topic acknowledge they have to be careful to consider religious, disabilities and minority groups that raise concerns about premature cutoff of medical services, when lives are at stake.

Those interest groups had a role in crafting the new legislation and in the work of the statewide Task Force for Quality at the End of Life, which has been preparing a comprehensive report on the topic.

Read the entire article to appreciate the complexity of the issues, the genuine concerns of advocates, the need for a legal framework in health care decision-making, and the likely continued evolution of both laws and medical procedures in addressing these matters.