By Danielle Sapega
Advance care planning is an interesting blend of clinical, ethical, moral, and legal issues. Some complex scenarios require the input of a multi-disciplinary team consulting on conflicting opinions of a large family. Other situations might simply involve a quiet conversation between a staff member and the patient’s spouse. Laws provide guidance and can help resolve conflict, but the letter of the law does not always settle outstanding problems and arguments around healthcare decision-making.
While advance care planning is still a relatively new concept (the associated laws and legal documents did not appear until the second half of the 20th century), its underpinnings are rooted in the ethical principle of autonomy, which can be traced to ancient Greek philosophy. Autonomy is the principle of self-governance or self-determination, that every human being has the right to dictate how to live his or her own life and make choices. In the context of healthcare, autonomy translates to every human having the right to control every aspect of his or her medical care. Healthcare autonomy has made the legal spotlight multiple times in the past few decades in the form of “right-to-die” cases, including the U.S. Supreme Court cases involving Karen Quinlan, Terri Schiavo, and Nancy Cruzan. These cases arguably represent the worst-case scenarios that can arise, but each case could have been potentially avoided if the patients had prepared advance care planning documents.
In 1991, the federal government enacted the Patient Self Determination Act, which requires healthcare providers to (1) inform patients of their rights to make decisions concerning their medical care under state law; (2) document in the patient’s chart whether or not the patient has executed an advance directive; (3) not discriminate against patients who have executed an advance directive; (4) ensure that advance directives and documented medical care wishes are respected and implemented to the extent permitted by law; and (5) provide education for staff, patients, and the community on ethical issues concerning medical choices and advance directives. The act recognizes a patient’s right to refuse medical treatment, including life-sustaining interventions, and the importance of advance care planning.
The Patient Self Determination Act was not the only legislative development resulting from these controversial cases. Many states responded by passing legislation — or amending already-existing legislation — governing living wills and powers of attorney to help avoid legal uncertainty and confusion. States continue to update their advance care planning laws, and while the laws must comply with the federal law, each state’s laws might be slightly different. This can be crucial when assessing validity of a power of attorney or living will, the extent of the healthcare agent’s powers, and many other issues that could potentially arise during the course of a patient’s treatment.
For example, Pennsylvania law requires that a healthcare power of attorney document must be signed by the patient and witnessed and signed by two adult individuals. However, in New Jersey, such a document is valid if signed by the principal and two witnesses, or if signed in the presence of a notary and the document is notarized. Whether the New Jersey healthcare power of attorney is valid in another state would depend on whether the other state has permitted legal reciprocity to New Jersey’s laws, or whether that state would hold the document to the standard of its own laws.
However, while a healthcare power of attorney document might not be “valid,” it does not necessarily mean the document will be set aside entirely. To provide another example, if a patient arrives in a Pennsylvania hospital with a document considered invalid for one reason or another, Pennsylvania law provides that the patient’s writing still directs the staff to look to the individual named as the agent to serve as the healthcare representative. In some states, an individual named in a healthcare power of attorney document is considered a “healthcare agent,” while an individual otherwise designated by the patient or by the state laws as the decision-maker is a “healthcare representative.” Other terms include “surrogate decision maker” or “representative.” In many states, a healthcare representative/surrogate decision maker has almost the same extent of decision-making authority as a healthcare agent. So chances are good that the legally invalid document would not mean any disruption in care or a hectic search for available next of kin.
While it might not always be readily apparent, laws are intended to create structure and help society function, and laws governing advance care planning are intended to preserve a patient’s autonomy and help guide healthcare providers and family on decision making. Healthcare providers and patients alike are encouraged to, above all, create advance care planning documents, but they should also familiarize themselves with their respective states’ laws.
Danielle Sapega is associate counsel at Lancaster General Health/Penn Medicine in Lancaster, PA.