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March 28, 2024

Celebrating National Healthcare Decisions Day

Karren Jo Pope-Onwukwe
The PDF for this issue which includes footnotes and endnotes can be found at here.

Did you know that National Healthcare Decisions Day (NHDD) has its own website: www.nhdd.org and that it occurs on April 16th every year? It is one of over 1,200 national days celebrated in the United States (nationaldaycalendar.com). The Maryland General Assembly passed legislation that became effective October 1, 2016 adding NHDD to the list of state Commemorative Days requiring the Governor to issue an annual proclamation.  In 2006, attorney Nathan Kottkamp organized the Virginia Advance Directive Day and had participation from all of the hospitals in the state, he had even more participation in 2007 and in 2008 he made it a national day.

How Did We Get Here?

Have you ever been in a hospital waiting room and the doctor comes out to discuss a patient’s status? Normally, this type of interaction is pretty routine, the doctor shares information with the family gathered at the hospital and everyone is relieved. Unfortunately, in some cases the doctor may inform the family that the patient is in a coma or a persistent vegetative state or a drug-induced coma. Sometimes the doctor must inform the family that there is nothing medically that can be done for the patient and a decision must be made to discontinue life-sustaining treatment. Under these scenarios the doctor needs a surrogate decision-maker to give informed consent to medical treatment. For many Americans this presents a problem because the patient has never signed an Advance Medical Directive.

Most Americans are familiar with the litigation that may arise out of these types of scenarios caused by conflicts between legal, medical and faith/social constraints. There are three cases that stand out: In 1976 Karen Ann Quinlan the 21year-old young lady in a persistent vegetative state whose parents had to sue the hospital to remove their daughter from life-support.  In 1990 Terri Schiavo’s husband and her parents began a legal battle to determine whether the 26 year-old should be disconnected from her feeding tube as her husband wished or allowed to stay on as her parents wished. The case went before the Florida Supreme Court, the US Supreme Court, even the US Congress and the White House.  The 1990 the US Supreme Court heard the case of Nancy Cruzon, a young woman who at the age of 24 had been in a permanent vegetative state for seven years and was being kept alive by a feeding tube. Nancy’s parent’s were suing for the right to remove the feeding tube, the state of Missouri argued that it needed, “clear and convincing evidence” of what Nancy would have wished to occur. The Court ruled in favor of the Cruzons, ruling that individual’s have a constitutional right to be free of unwanted medical intervention.

In 1991, Congress passed the Patient Self-Determination Act (PSDA) that mandated that patients be informed of their rights and be offered information about advance directives. In response to and in an effort to avoid litigation, hospitals created Ethics Committees to help address conflicts or uncertainty. According to the American Medical Association, the 1990’s saw the number of hospital ethics committees grow from 60 percent to over 90 percent of all hospitals. Generally, the ethics committee is comprised of hospital staff (physicians, nurses, social workers, chaplains and others) and members of the community.  As part of his health law practice Mr. Kottkamp sat on several hospital ethics committees. Over the years, attorney Kottkamp became dismayed at the amount of cases that came before the committee that could have been resolved if the patient had executed an Advance Medical Directive.

Can One Person Make A Difference?

Have you talked to your family members and friends about your wishes in the event that you could not communicate? It appears that the hardest ethical cases involve a young adult who has suffered a catastrophic event. This is why it is important to have multigenerational conversations. Your children know your wishes and you know their wishes. You can be the leader in your family, or in your community. You can make a difference.

Since Nathan Kottkamp took his NHDD idea national in 2008, over half a million Americans have received advance directives education, over 14,000 advance directives have been executed and the day has raised awareness of the importance for every adult (not just the elderly) to complete an advance directive.  Although attorney Nathan Kottkamp remains the chair of NHDD, in June of 2016 the Conversation Project (theconversationproject.org) became responsible for the management, finances and structure of NHDD. The vision for the NHDD Is:

“Across the country, every healthcare facility will participate as the flagship venues for the public engagement. Other participating organizations/facilities that have their own physical spaces will work in conjunction with others or at non-healthcare venues (libraries, grocery stores, drug stores, etc.) to support the initiative. A variety of churches, synagogues, and mosques around the country will also support the effort by highlighting the importance of advance care planning with their congregations.”

Although the national day is celebrated on April 16th, it is not mandatory that the celebration occurs on that day. The Elder Law and Disability Rights Section of the Maryland State Bar Association has been celebrating NHDD on May 1st as a part of Senior Law Day observances. The Maryland Volunteer Lawyers Association provides malpractice insurance to volunteer attorneys across the state. Each county finds partners such as the Area Agency on Aging, local nursing homes, local senior housing facilities, local government’s aging groups and they provide this pro bono community service. In 2015, the section received an award from the Maryland Pro Bono Resource Center for providing this valuable service to older adults and persons with disabilities. With groups such as the Elder Law Committee of the Senior Lawyers Division of the American Bar Association providing a spotlight on April 16, 2018 as National Health Care Decisions Day, perhaps the day when the NHDD vision is realized is closer than we think.

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