Feb 1 2020

Medium: A Five-Point Plan for Meaningful Change, 30 Years After the Cruzan Case

The landmark Supreme Court ruling did not solve the problem  yet.

By John G. Carney and Jeff Zucker for Medium

It’s not often a Supreme Court decision triggers a national movement. But arguably that’s what happened 30 years ago this month with Cruzan v. Director, Missouri Department of Health. The well-intentioned movement became a flurry of legal forms and new processes, yet too many Americans still risk not having a voice in their healthcare decision-making if they don’t express themselves clearly in advance. The good news is, we’ve learned a lot in the past 30 years. Society is now armed with ethicists, social workers, caregivers, religious leaders and medical professionals who are more aware and ready to help people. The rapid convergence of healthcare reform, an increasingly empowered consumer demographic and easy-to-use technology gives us the chance to express, update and share our voices in real-time. In short, from the spark of the Court’s opinion, this is a healthcare challenge we can solve today.

But first, a little background.

In 1983, 25-year-old Nancy Cruzan was in a car accident; she never regained consciousness. The accident left her in a “persistent vegetative state,” a condition from which doctors believed she would never recover and one her parents argued she would not want to continue to persist in. For seven years, she subsisted on artificial feedings administered through a feeding tube. In 1988, Cruzan’s parents asked to have the tube removed; however, the hospital refused and the state asserted its right to protect and preserve human life. The Missouri Courts held that without clear instructions, it could not honor the parents’ request and that no clear and convincing evidence had been presented to warrant the state’s terminating the patient’s treatment.

The ensuing legal case eventually made its way to the U.S. Supreme Court. Even though the Court upheld by a 5–4 decision the state Supreme Court’s ruling regarding the requirement of Cruzan’s preferences through clear and convincing evidence, the case was returned to the state for further consideration. Within days, evidence was presented to the State of Missouri sufficiently meeting the threshold, and the family’s request to have the feeding tube removed was honored by an appeal to a probate court.

Justice Sandra Day O’Connor’s concurring opinion agreed with her colleagues that people have a constitutionally protected right to refuse medical treatment, and that states had a duty to “protect the patient’s liberty interest in refusing medical treatment.” But Justice O’Connor went on to acknowledge that duty because few individuals “provide explicit oral or written instructions regarding their intent to refuse medical treatment.” This call for evidence triggered efforts to get citizens to create documents, name agents and state their wishes. A series of state laws were adopted, but, unfortunately, the policies and documents took many forms that created confusion and too often encouraged procrastination. As the American Bar Association Commission on Law and Aging Director Charles Sabatino has said, we focused too much on the form and forgot the substance. From our perspective, we got in our own way and created something more complicated than necessary. Legalese, check boxes, yes or no answers, and always or never options became the norm when, in reality, this was supposed to be as easy as writing one’s thoughts on the back of a napkin.

Lost in all the paper documents was the substance: who do I want to speak for me when I can’t speak for myself? Have I made that decision clear to that person, secured their understanding and shared with them what’s most important to me? Are there any goals, preferences and priorities of care and treatment that I would want a provider and my agent to know? At a practical level, where is the document providing the evidence? Is it easy to update as thoughts change?

An overwhelming majority of Americans believe it is important to have discussions with their families about their goals if they have a sudden, incapacitating health crisis, but only about 30 percent of us do. Of the few advance care plans that are created, most are not readily accessible. Thus, treatments are delayed while overworked practitioners try figuring out what’s going on, often relying on emergent default medical decision-making or acting more from standard protocols than individualized considerations to honor personal goals. In short, in the 30 years since the ruling, society is still at risk of another Nancy Cruzan case; or not honoring the patient’s voice and treatment preferences.

Americans deserve better. We recommend our leaders encourage these five steps:

1. Normalize the ask: Former Department of Health and Human Services Secretaries Tommy Thompson and Kathleen Sebelius specifically called for employers and health insurers to get involved and normalize advance care planning for everyone over 18 years of age. This would make these important steps a routine part of our lives, similar to filling out an organ donor card at the DMV.

2. Start with naming an agent: Ensure there is someone to speak for you when you can’t speak for yourself. Make sure they accept the role and their contact information is easily retrievable.

3. Update or re-confirm your plan and your agent annually: National Healthcare Decisions Day falls within the same week as Tax Day, which makes it easy to execute or update your living will and remind your agent about your values and goals.

4. Make it accessible: Ask your providers if they know where your documents are in your electronic health record, and share them with loved ones. Health insurance payers have a vested interest in helping you.

5. Make it clear and make it audible: No employer, doctor, or health insurer owns your voice. Give consent for others to know about your plan and act on your behalf.

Thirty years later, let’s ensure that Nancy Cruzan’s lasting legacy is one for all Americans — share your values, talk about your goals, name someone who can speak for you and then document it. We can do this. It’s time — and it matters.

John G. Carney is the President and CEO of the Center for Practical Bioethics, creators of the Caring Conversations® advance care planning workbook.

Jeff Zucker is the CEO of ADVault, Inc., creators of the and MyDirectives MOBILE digital advance care planning platform and the Most Unselfish Selfie.

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