February 27, 2018

Can One Person Make a Difference? Celebrating National Healthcare Decisions Day

Karren Pope-Onwukwe

Did you know that National Healthcare Decisions Day (NHDD) occurs annually on April 16th? It is one of more than 1,200 national days celebrated in the United States.

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 Kattkamp organized the Virginia Advance Directive Day with participation from all the hospitals in the state. There was 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 is 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, 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. In these scenarios, the doctor needs a surrogate decision-maker to give informed consent to medical treatment. However, this often 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, the parents of Karen Ann Quinlan—a 21-year-old woman in a persistent vegetative state—had to sue the hospital to remove their daughter from life-support. In 1990 the husband and parents of 26-year-old Terri Schiavo began a legal battle to determine whether she should be disconnected from her feeding tube. The case went before the Florida Supreme Court, the US Supreme Court, even Congress and the White House. In 1990, the US Supreme Court heard the case of Nancy Cruzon—a 24-year-old woman who had been in a permanent vegetative state for seven years and was being kept alive by a feeding tube. Nancy’s parents were suing for the right to remove the feeding tube, but 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 Cruzon’s ruling that individuals have a constitutional right to be free of unwanted medical intervention.

In 1991, Congress passed the Patient Self-Determination Act (PSDA) mandating that patients be informed of their rights and be offered information about advance directives. 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 more than 90 percent. 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. Kattkamp sat on several hospital ethics committees. Over the years, attorney Kattkamp became dismayed at the number 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 if you could not communicate? It appears that the hardest ethical cases involve a young adult who has suffered a catastrophic event. Therefore, 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 Kattkamp took his idea national in 2008, more than half a million Americans have received advance directives education, more than 14,000 advance directives have been executed, and the day has raised awareness of the importance of advance directives for every adult (not just the elderly). Although attorney Nathan Kattkamp remains the chair of NHDD, in June of 2016 the Conversation Project (https://theconversationproject.org) became responsible for the management, finances, and structure of NHDD. The NHDD vision is that:

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 to provide this pro bono community service such as the Area Agency on Aging, local nursing homes, local senior housing facilities, local government aging groups. 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 American Bar Association Senior Lawyers Division 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.