Dear Friends,
Earlier this month, the Pennsylvania House Health Committee held a hearing on legislation I am proposing to modernize Pennsylvania’s health care decision-making law and improve how individuals and families plan for future medical care.
My interest in this issue is deeply personal. Several years ago, I brought my mother to Pennsylvania for treatment for acute myeloid leukemia. During that experience, I became much more familiar with Pennsylvania’s current framework for advanced healthcare planning and end-of-life decision-making, including the use of POLST forms (Pennsylvania Orders for Life Sustaining Treatment), and the Healthcare Decisions Act.
A POLST form is a medical order designed to help ensure that a patient’s treatment preferences are followed across different health care settings, including hospitals, nursing homes, and assisted living facilities. These forms can be extremely important tools and are generally intended for patients with serious health conditions, who are at increased risk of experiencing a medical emergency, and who want to clearly communicate their wishes regarding treatment and end-of-life care.
The form addresses difficult but important questions involving CPR, intubation, mechanical ventilation, antibiotics, and feeding tubes. Given my mother’s leukemia diagnosis, completing a POLST form was appropriate and medically necessary. However, she was uncomfortable with how rigid the form felt and believed it did not fully capture the nuances of her wishes, values, and goals of care. My mom similarly felt that some of the aspects of the current Act, a sample form of which can be found here was limiting as well. Like many families facing serious illness, we found that real-life medical decisions are often far more complicated than checking boxes on a form.
While some people may have the resources to hire an attorney to create customized legal documents with greater flexibility, many Pennsylvanians cannot afford that option. Across the country, many families and even many attorneys rely heavily on the standard state forms that are available as the basis for discussions on these topics. When those forms are too narrow or outdated, patients and families can be left without tools that reflect their care goals, and far too many go without making their wishes known.
That experience stayed with me and helped shape my belief that Pennsylvania should modernize its laws to give people more flexible, accessible, and patient-centered options for advance care planning, as well as close existing loopholes.
My legislation, which is still in draft form, would adopt key provisions from the updated Uniform Health-Care Decisions Act, a model law developed by the Uniform Law Commission to help states modernize advance-care planning and surrogate decision-making laws. Delaware enacted this framework last year, as did Oklahoma, and several other states are now considering similar reforms. Having a hearing allowed us a better understanding of where Pennsylvania law is working and where it lacks, and practitioners’ insights into how the proposed legislation will impact Pennsylvanians.
The Uniform Law Commission is a bipartisan body made up of legal experts from across the country that develops carefully researched model legislation for states to consider in areas where consistency and modernization are important. The Commission does not enact laws or advocate for partisan outcomes. Instead, it provides states with thoughtful legal frameworks that can be adapted to meet each state’s needs.
The Commission's original Uniform Health-Care Decisions Act was drafted more than thirty years ago, long before today’s advances in medical technology, electronic legal documents, modern understandings of mental health care, and changing family and caregiving structures. Recognizing how much has changed, the Uniform Law Commission convened experts and stakeholders from around the country in 2021 to update the law. The revised Act was approved in 2023 after extensive review and input from medical, legal, patient, and advocacy organizations.
At the hearing, experts testified that the updated law would make it easier for Pennsylvanians to create advanced directives, clarify who can make decisions when a patient loses capacity, and better protect patients’ values and preferences during serious illness.
The testimony highlighted several important improvements:
• Making advance directives more accessible by recognizing electronic signatures and remote witnessing.
• Clarifying who may serve as a surrogate decision-maker when no formal health care power of attorney exists, reducing confusion and family conflict during medical emergencies.
• Better reflecting modern families and caregiving relationships by recognizing domestic partners, cohabitants, and other trusted individuals who may know the patient best.
• Strengthening patient rights by creating clearer standards for determining incapacity and allowing patients to object to those determinations.
• Supporting individuals with chronic mental health conditions through specialized mental health advance directives.
• Providing clearer guidance and legal protections for health care professionals acting in good faith.
The model legislation also recognizes that capacity can vary over time and that some people, who might currently be deemed to lack capacity under our current law because they use help or need plain language explanations, should be given the ability to make decisions on their own terms. Modern approaches to advance-care planning increasingly recognize that decision-making capacity is not always all-or-nothing and that many people can make informed decisions with appropriate support and accommodations. One such example is through Supported Decision Making. My bill provides clearer standards for determining incapacity and creates safeguards to allow individuals to object to capacity determinations or choose trusted supporters and surrogates who understand their values and preferences in helping them reach decisions. This ensures that people with disabilities are treated with dignity, respect, and full recognition of their right to direct their own care whenever possible.
As physicians and legal experts explained during the hearing, many patients never complete formal legal paperwork, even though they have trusted people in their lives who understand their wishes and values. Unfortunately, under current law, uncertainty about who can make decisions often creates unnecessary conflict, delays care and adds stress for families during already difficult moments.
This legislation is about ensuring that every Pennsylvanian has the tools to plan for their future care and that medical decisions reflect the patient’s own values, goals, and wishes.
I was fortunate to be in the room when my mother suffered a seizure caused by a brain bleed that ultimately led to her passing. She had wanted to update her POLST form but found the process and the form itself overwhelming. Fortunately, we had spoken extensively about her wishes over the years, and we were both incredibly lucky that, during one of her final moments of clarity, she was able to tell her doctors directly that I should make decisions on her behalf. Because of that, we were able to transition her to comfort care in a way that honored her wishes and values.
I am deeply aware that many families do not get those moments of clarity or the opportunity to appoint a decision-maker in time. No one should have to rely on being physically present in the room at exactly the right moment to ensure their loved one’s wishes are respected. That is why I want to ensure families across the Commonwealth have clearer, more accessible tools to guide them through and prepare them for these difficult situations with certainty, dignity, and compassion.
Pennsylvania has a strong foundation in its current advanced directive law, but after nearly two decades, it is time to update that framework to reflect the realities of today’s health care system.
I look forward to continuing this conversation and working to ensure that all Pennsylvanians have access to a modern, compassionate, and patient-centered health care decision system. I hope this glimpse into how some legislation develops and moves forward was informative.