We’ve all got to-do lists. Some of the things are immediate, such as going grocery shopping or getting the car inspected.
Other to-do lists consist of bigger projects, like getting the roof repaired or cleaning out the garage.
Then there’s the list of things that we just don’t want to deal with but know we should, like the one where we think about how we should really start figuring out retirement planning or make out our will. “I’ve got time to get to that,” we tell ourselves.
Then there is the case of creating our advance directive in Vermont, which is sometimes called a living will. This is something that really shouldn’t wait. Anyone 18 and older should have an advance directive and, in the Southeastern Vermont area, we are lucky to have the free services of Taking Steps Brattleboro to help us make that a reality.
An advance directive, or AD, is a document that outlines your wishes should you be unable to make health care decisions for yourself because of serious illness or injury. Untold numbers of Americans end up in nursing homes as a result of these medical interventions. Many times, patients with dementia are treated for medical issues that they would have preferred were handled differently. We all want to be strong and independent, but, if your wishes are not made clear, you might end up in a situation where you are dependent on machines to stay alive or completely dependent on others for your care. Or you might want to stay alive if at all possible, and an AD will communicate those wishes.
Unfortunately, tragic stories of young people are at the core of the creation of the AD. The 1983 case of Nancy Cruzan went all the way to the U.S. Supreme Court. She’d ended up on life support after a car accident when she was 23, and her parents struggled to communicate Nancy’s wishes to her health care providers. In 1990, and in response to Nancy’s case, Congress passed the Patient Self Determination Act, which ensures that a person’s right to determine health care decisions is protected and communicated.
Above and beyond incapacitating accidents and injuries, the COVID-19 pandemic resulted in countless stories of people who were placed on ventilators, unable to make their wishes known. For the families of those COVID patients with an AD in place, having a plan helped to remove some of the strain and distress around making health care decisions.
Part of the process of filling out your advance directive is naming the people, or agents, who will be designated to carry out your wishes and communicate with the health care providers if you are unable to. This step is a common stumbling block to getting the AD off your to-do list. Maybe you don’t really want your spouse to be the agent and prefer it to be one of your siblings, or maybe you are concerned that if you choose who you really want, then someone else’s feelings will be hurt. The solution is to just get started on the process. A Taking Steps advance care planner can help you find a way forward. The most important part of creating your AD is the conversation you have with the person named on the form. There is no way to create a directive for every potential scenario; the conversation will create an understanding of your wishes that your agent can then convey.
When my good friend, Juliet, received the call that her mother had been in a bad car accident, leaving her in a coma with severe injuries, she was able to engage in the process of making decisions for her mother’s care in step with what her mother wanted. There had been a series of conversations between the two of them, and Juliet felt clear about her mother’s wishes. Importantly, there was also a written advance directive that she took to the medical team and, together, they discussed the options. “The situation was awful,” Juliet said, “but because my mom had an advance directive there was a clarity that made the decision to let her go the easy part.” When another family member wanted to keep her alive at all costs, Juliet was able to clearly share her mother’s wishes.
In the case of psychiatric illness or dementia, an AD can be a vital tool for creating a plan for optimal mental health and wellness. It protects the person’s autonomy and allows them to direct their own care. A psychiatric advance directive can consist of medication preferences, inpatient treatment plans, and guidelines that could help reduce the occurrence of involuntary procedures and prolonged illness. In Vermont, this is available in the long form of the AD.
Taking Steps Brattleboro is part of Brattleboro Area Hospice, and all services at Brattleboro Area Hospice are available free to anyone living in Southeastern Vermont and the neighboring towns of New Hampshire. Call Brattleboro Area Hospice, and staff will do an intake on the phone, connect you with a volunteer and help with filling out the AD form. If you would like to have your advance directive in the national registry, they can assist with that as well. They also witness, copy, and distribute the form to your local health care team.
Advance care planners are even available to work with groups. For my 40th birthday, I hosted an advance directive party! A small group of us had wine and cheese and snacks, as we gathered around in a circle and were guided through the process. It was a wonderful way for us all to become closer while creating a document that is an act of love for those closest to us.
The feeling of security and calm that comes from knowing you have an advance directive in place is wonderful. And there is the relief of getting this off your to-do list. You will have the comfort of knowing those closest to you won’t have to guess what you would have wanted, in a complicated emergency situation, and that you won’t end up with unwanted outcomes.
As Juliet said about the tragic loss of her mother, “Anything to make it easier is a blessing.”