By Christopher M. Hughes, M.D.
Act 169, Pennsylvania’s new advance directive law, was signed late last year by Governor Rendell and went into effect in February of this year. There are many changes that will be important to medical practice in the bill. In this article, I will give an overview of the prior advance directive law, its problems and limitations, and then review Act 169 in enough detail for the practicing clinician.
Pennsylvania’s prior advance directive law, passed in 1992, was among the last of such bills enacted in the United States, and was very limited in its scope. It essentially only addressed the basic advance directive without any direction provided to the health care community beyond the extremely limited circumstances of what to do when the patient was incompetent and either terminally ill or permanently unconscious, and had an advance directive. While an advance directive may have given clinicians some general guidance as to the wishes of the patient, it certainly was not satisfactory in addressing the overwhelming majority of cases that fell somewhere between a clearly terminal condition and everything else. Because of this and other limitations, practices developed in Pennsylvania to address these gray areas. In spite of the lack of direction from the Legislature, there was no explicit prohibition in the state to prevent institutional development of end-of-life care policies that reflected advances in bioethics occurring over the years. Therefore most institutions developed policies for withholding or withdrawing life-sustaining treatment in patients who were seriously or hopelessly ill but who did not have an advance directive or a health care power of attorney. While many institutions were comfortable with this ambiguity, many were not, and problems arose when dealing with situations that were not clearly expressed in the law. The most common problem related to the authority of the incompetent patient’s family and friends when there was no advance directive. Another was the lack of transferability of “do not resuscitate” orders to other care settings.
Many factors came together to prompt the reformulation of Pennsylvania’s advance directive act. Most importantly, the landscape of ethics and end-of-life care has changed significantly in the past 15 years. As examples, Oregon passed its “Death with Dignity Act” in 1994 and launched the Physician Orders for Life-Sustaining Treatment program (POLST) in 1995. That same year Pennsylvania’s Supreme Court rendered an opinion on the Fiori case. Greater awareness of end-of-life issues was an outcome of the Robert Wood Johnson Foundation and PBS’s “On Our Own Terms,” by Bill Moyers. And, of course, there was the Terri Schiavo case.
Also in this mix was a general recognition that, in spite of so much good faith effort, standard advance directives were not serving us well. Only 20 to 30 percent of the population had advance directives, and they were often so limited in their direction that they were not helpful. And while clearly good medical practice demands that physicians discuss end-of-life issues and advance directives with their patients, the message of Medicare, Medicaid and insurers through their reimbursement policies is that this is not valuable. So, in many ways, Act 169 represents an effort to remedy the deficiencies in the system by allowing for decision-making even in the absence of an advance directive. Additionally, the Act requires consideration by the Department of Health of orders similar to “do not resuscitate” orders that are transferable among health care facilities and the community.
Act 169 specifically reaffirms the use of living wills and explicitly delineates the powers of health care powers of attorney, and health care representatives (absent an advance directive). It provides for the Pennsylvania Department of Health to establish a committee to advise it on the mandatory use of a standardized physician order form that can effectively communicate the wishes of seriously ill patients to have or to limit medical treatment as they move from one care setting to another. Act 169 also provides clear rules governing decision-making for incompetent patients, has special rules presumptively favoring artificial nutrition and hydration, has protections for the disabled, and expands immunity protection for physicians and other health care providers.
With regards to the provisions of the standard advanced directive and health care power of attorney, Act 169, except in a particularly significant definition, reaffirms current practice. Now, instead of the classic triggering mechanism of a patient having a “terminal condition,” the new standard is an “end-stage condition.” While the definitions of these two terms are virtually identical, the penumbra of meaning surrounding “terminal” has always been difficult for physicians. Its implication of certainty and its entanglement with Medicare definitions has often made it difficult for physicians to confidently declare someone “terminal.”
“End-stage condition,” on the other hand, implies a degree of certainty with which most clinicians will be comfortable. Examples include the patient with Alzheimer’s disease who begins to have difficulty swallowing or is becoming anorexic, the emphysema patient on extensive multimodality treatments, or the stage IV cancer patient. There is likely to be significantly less disagreement among patients and clinicians in the assessment that the condition has become end-stage as opposed to the more emotionally loaded term, “terminal.”
The definition of end-stage as opposed to terminal conditions also plays an important part in the authority of decision makers when there is no advance directive. Act 169 specifically designates “healthcare representatives” to act for incompetent adult patients who have no controlling living will, health care agent, or legal guardian. The priority list for determining representative status is as follows:
· Current spouse and adult child or children of another relationship.
· Adult children.
· Adult sibling.
· Adult grandchild.
· Close friends.
When necessary, the decision of the majority of the highest ranking class may be used for decision-making. These representatives have the authority to engage in decision-making on behalf of the patient, but when it comes to withdrawing or withholding life sustaining treatments, representatives are only granted this authority when the patient meets the definition of being incompetent and having an end-stage condition or permanent unconsciousness.
It is worth saying that there was no intent by those of us who worked on the bill to use this priority list as an excuse for not trying to achieve consensus among family and friends who are involved in the care of the patient. Clearly, the ethically correct process is to try to achieve consensus in decision-making in these difficult cases. In my opinion, this should always be the goal. Defaulting to the representatives by their position on the priority list and not doing the hard work required to provide excellent end-of-life care by listening, caring, communicating and advising is a missed opportunity to be a better physician. There will, unfortunately, be situations where this cannot be achieved. Hopefully, as we become more comfortable and competent with these situations, they will become more and more rare.
The decision-making process for agents and representatives is delineated in the bill. The general criteria for these decisions are first, to follow the clearly expressed oral or written wishes of the patient; second, to reflect the preferences and values, including religious and moral beliefs of the patient; and finally, to act in the best interests of the patient when these other preferences are unknown. The goals and considerations of the best interests evaluation include preservation of life, relief from suffering, and preservation or restoration of functioning.
Another very important component of Act 169 is provision for the patient to countermand decisions made by the agent or representative. A patient, even if deemed incompetent, may countermand decisions to withhold or withdraw life-sustaining treatments. This provision represents a compromise position and a situation arose in my own practice only days after Act 169 took effect. The dilemna of that case was resolved, though undoubtedly to no one’s ultimate satisfaction. How problematic this provision will be remains to be seen.
The disability community had a significant impact on act 169 and on our thinking about the decision-making process. Surrogate decision-making has often been problematic for the disabled. Dr. Kit Gorton, a board member for the Arc of Pennsylvania, a disabilities advocacy organization, has been particularly helpful in reaching out and helping us to understand the concerns of the disabled, and so I will paraphrase him here. People with disabilities often have conflicted views of health care professionals: they respect our knowledge and skills but they question whether we devalue people we can’t fix completely. They understand that they are heavy consumers of health care and they are complicated, challenging people to care for, yet their perception is sometimes that health care professionals frequently view them as burdens and sometimes even seem to blame for having disabilities. Health care professionals may only experience people with disabilities when they are ill and may fail to recognize that they lead full, rich lives when they are well. People with disabilities know about “slow codes” and other disparities in access to care and worry about not being “worth saving.” People with disabilities want to be empowered to make choices that affect their lives. Some feel health care professionals may sometimes seem to value “normal” as the only meaningful outcome and to confuse chronic disability with acute reversible conditions. People with disabilities generally come to terms with who they are – they donwant to be fixed, but instead supported always and healed when possible.
As noted previously, Act 169 requires the Department of Health to establish an advisory committee, recently established as the “Patient Life-Sustaining Wishes Committee.” Its mission will be “to determine the advisability of using a standardized form containing orders by qualified physicians that detail the scope of medical treatment for patients’ life-sustaining wishes.” This committee will be meeting soon and I hope will bring a program to Pennsylvania similar to that of the POLST Program established in several other states.
The POLST and similar forms are designed to help health care professionals honor the treatment wishes of their patients, particularly the seriously ill. The form contains physician orders regarding CPR code or no code status; levels of intervention (comfort care, limited treatment or full treatment) and use or withholding of antibiotics and feeding tubes. POLST forms accompany patients as they are transferred from one care setting to another and are recognized across care settings. This may turn out to be the most important piece of Act 169, but it is still too soon to know. As this committee completes its work, we will hopefully have a program and form that does right by Pennsylvania’s citizens.
For more information on POLST, please go to www.polst.org
For more details about Act 169, please go to www.pamedsoc.org/advancedirectives
For information for patients, go to www.myfamilywellness.org
Christopher M. Hughes, M.D., FACP, FCCP, FCCM, is a trustee of the Pennsylvania Medical Society, and is Co-Director, Critical Care Services, St. Clair Hospital, Pittsburgh, Pa.