Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN
Editor-in-Chief OncLive Nursing
Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing
Louisiana State Health Sciences Center in New Orleans, Louisiana
Brittany Maynard is now the face of the “right-to- die movement” after the news media began covering her controversial decision to end her life, on her own terms, on November 1, 2014. Her YouTube video about her decision, made for the advocacy group Compassion & Choices, has been viewed over 11 million times (http://goo.gl/F3FSKQ
Her decision ignited a timely and much needed discussion about autonomy, decision-making, and options at the end of life.
In September 2014, the Institute of Medicine (IOM) issued the Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life report that concluded that end-of-life care in the United States is deficient at every level. The IOM noted that our current healthcare system is geared to doing more and more, which often does not improve outcomes, nor is it cost-effective or necessarily want patients want.
Understanding Advance Directives
We can expect questions from our patients about Maynard’s decision, and in order to respond accurately and effectively, we need to be well informed about end-of-life choices and resources. No one would argue that advance planning should occur well before the very end of life. Plans should be documented and communicated in a living will, which lists end-of-life preferences, and a medical durable power of attorney, which identifies who will speak on behalf of the individual, should the individual become incapacitated to make decisions.
Each state has its own guidelines and forms for advance directives, and the Compassion & Choices website (www.compassionandchoices.org) lists each state’s requirements. Additional provisions (eg, dementia provision, hospital visitation authorization) may be considered, and contrary to popular belief that an attorney must be consulted to complete advance directives, the forms become legally valid as soon as they are signed in front of the required witnesses. It’s recommended that advance directives be reviewed periodically to ensure that the most current, state-approved format is used and that they continue to accurately reflect the individual’s wishes, which may change over time.
In a patient-centered model of care, unwanted treatment should not be delivered, and patients should always be the focus of care. Patients have the legal right to refuse medical treatment, and the 1990 Patient Self-Determination Act states that healthcare facilities that participate in Medicare and Medicaid must follow state laws, educate patients about their right to make their wishes known through advance directives, and document whether or not a patient has advance directives. By law, when healthcare providers do not want to uphold a patient’s wishes, they are required to facilitate a transfer to providers and/or facilities that will honor the patient’s wishes.
As our patients approach the end of life, they may be interested in an out-of-hospital do not resuscitate (DNR) order, which applies to death occurring at home or anywhere outside of a medical facility. This document, signed by a physician, must be accessible and in some states must be displayed (eg, a few states require that a specific colored paper copy of the DNR order is posted on a refrigerator). Patients also may be unaware of the Sectarian Health Care Directive, an optional addendum to advance directives that was implemented in 2011. The addendum clarifies that admission to a religiously affiliated facility does not imply consent to particular care mandated by the facility’s religious policies and directs a transfer to another facility when the facility declines to follow wishes outlined in an advance directive.
Five states (Oregon, Washington, Vermont, Montana, and New Mexico) have right-to-die laws (bills have been introduced in some other states). Maynard moved from California to Oregon, the first state to pass these laws.
Oncology nurses need to continue the conversation— and in some cases, start the conversation—about dying and honoring an individual’s preferences at the end of life. Patients want, and deserve, compassionate patient-focused care in their final days.