Over 200 million people globally have legal access to some form of aid in dying. In 2008, Washington became the second of eleven U.S. jurisdictions offering Medical Aid-in-Dying (“MAiD”). Among these jurisdictions, Washington, California, and New Mexico each require at least some healthcare entities to make their MAiD policies publicly available via their website. Most recently, Washington’s updated Senate Bill (“S.B. 5179”) requires all hospitals to post their policies regarding admission, nondiscrimination, end-of-life and MAiD care, and reproductive healthcare.
Awareness of healthcare options at the end of life is essential in supporting a person’s ability to fully access their care needs on par with other health benefits to which patients are entitled, such as non-discrimination, translator services, nursing care, and the right to refuse treatment. The scope of healthcare options at the end of life may be referred to as “ending-life care,” which spans a range of offerings from planning tools like advance directives and physician orders for life-sustaining treatment (POLST) to palliative and hospice care. Ending-life care also includes the option of assisted dying.
Improving access to care service information through clear institutional policies communicates that informed patient care is paramount to healthcare delivery. This demonstrates respect for all persons, a necessary component of ethical care as outlined in the Belmont Report. The positioning of end-of-life and MAiD information on a hospital’s public website – alongside other important hospital policies governing admissions, visitation, protected health information, financial assistance, COVID-19 regulations, and reproductive care – communicates that comprehensive end-of-life care options are essential to a patient’s overall healthcare. A Policies and Procedures section on a hospital or hospice webpage provides patients with straightforward navigation without requiring advanced digital literacy. Omitting such information prevents individuals from evaluating essential resources necessary to their decision-making.
Without strong incentives and encouragement, healthcare institutions are falling short of these statutory disclosure requirements. Our research found that compliance with disclosure provisions in both Washington and California remains between 50-60 percent. This low-level of compliance still surpasses the policy available at healthcare facilities in other jurisdictions with no posting requirements. These inadequate rates of institutional policy disclosure are not supportive of patients’ decision-making autonomy. Lack of disclosure can lead to unfortunate complications with patient care, including providers refusing to answer questions about which end-of-life services they provide and reports of hospitals and hospices obstructing access for terminally ill patients who seek MAiD.
Policy disclosure requirements are an essential step toward improving transparency within healthcare delivery, but efforts by state-level policy makers go relatively unnoticed when compliance mechanisms are absent. We must support healthcare facilities in meeting statutory requirements and determine meaningful penalties for continued non-compliance.
There are three ways that states such as Washington can support patient decision-making.
First, compliance checks and enforcement mechanisms should be integrated into original or amended statutory language. This step was taken in Colorado’s Patient’s Right to Know Act, which identifies the department that will monitor compliance and includes an enforceable monetary fine for when a covered healthcare entity does not comply with disclosure requirements.
A second option is for public advocacy to increase outreach in these jurisdictions to inquire about and monitor a healthcare entity’s compliance. This approach seeks to build bridges rather than immediately jump to punitive measures. The Hemlock Society of San Diego has undertaken a letter-writing campaign to provide information to hospices that have remained non-compliant with California’s MAiD policy posting requirements. That outreach encourages healthcare entities to become compliant with the requirement and informs them about existing referral networks. There are known public health benefits of using a collaborative approach or balanced accountability method. Providing mutual support for all parties involved and offering assistance in overcoming barriers can reduce suspicion and simultaneously strengthen the key partnerships necessary to promote increased awareness and achieve patient health objectives.
A third, final option is public advocacy to inform state regulatory authorities, Medicare/Medicaid, and the Joint Commission when repeated lapses in compliance occur. The Joint Commission enforces hospitals’ failure to comply with local rules and laws, even if the standards are not promulgated by the Joint Commission via this Commission’s Standard LD.04.01.01, EP 2.
Awareness of all care options is essential to a patient’s overall well-being as they near the end of their lives. Treating patients respectfully and ethically at all stages of life is predicated on providing easily accessible and comprehensive information about what care options exist. Directives to improve health transparency are a powerful public health tool, but they must be properly implemented and healthcare institutions held accountable. Continued work is needed to destigmatize and expand access to the entire spectrum of ending-life care, and to ensure compliance with legal mandates geared towards improving policy transparency relating to patient care.
Gianna R. Strand, MS, DBe, is a faculty teaching associate at Columbia University and serves as the director of research at the Completed Life Initiative.
Karin Sobeck, RN, MSN, MSBe, is a faculty teaching associate at Columbia University, and former chairperson of the National Hospice Organization.
Sarah J. Kiskadden-Bechtel, MSBe, is the Director of Public Policy and Programming at the Completed Life Initiative (@completedlife).
David N. Hoffman, JD, is an assistant professor of bioethics at Columbia University and a clinical assistant professor of bioethics at Albert Einstein College of Medicine (@ethicsoncall).
All authors are members of the Empire State Bioethics Consortium (@NYSBioethics).