BRATTLEBORO — With the coronavirus pandemic on everyone's mind, now might be a good time to plan for medical care in the event of not being able to make decisions on one's own or to update a previous plan, local experts advise.
"It can be a frightening conversation for people to have," said Don Freeman, coordinator for Brattleboro Area Hospice's Taking Steps. "We try to do it with tenderness and caring in a safe environment."
Taking Steps is a program meant to provide assistance for those who want to complete an "advance directive" for health care. That is a legal document used to inform a medical treatment team and family about health care wishes, and/or name a healthcare agent in the event that someone is unable to speak for themselves.
Joanna Rueter, founder of Taking Steps Brattleboro and active volunteer in the program, said people are going to be scared about COVID-19. But she is encouraging anyone without an advance directive to make one.
"It's talked about as a gift to the people you love," she said.
Cindy Bruzzese, executive director and clinical ethicist at the Vermont Ethics Network, said an advance directive documents plans and preferences for an individual in the event that something unexpected happens and the person cannot make choices for themselves. That might detail what kinds of situations someone is trying to avoid and what they are willing to do to get better.
The directive is put in writing so family, friends and health care providers can have access to the information. A person or group of people can then speak on the person's behalf and be "a good advocate," Bruzzese said.
Rueter noted it is important to have these conversations with loved ones before an emergency situation.
Freeman said anyone 18 and older should have an advanced directive. In some states it may be referred to as a living will.
Bruzzese's group has general documents and a questionnaire to help get the process started. More information can be found at vtethicsnetwork.org.
Some people just want a personal statement describing what they want and value, Bruzzese said, and a health care agent can apply that information to the scenario. She noted that it can be difficult to imagine what situations individuals might find themselves in.
Rueter described the directive as "a safety net." She said the authority of those named to speak on a person's behalf ceases once the patient is able to make decisions again.
What makes the document a legal one in Vermont is signing and witnessing, Bruzzese said. There must be two witnesses and they cannot be the person's health care agent, spouse, parents, siblings, children or grandchildren.
Bruzzese said she is talking with the state's health department about how to get creative about witnessing in the age of social distancing, as Vermont law requires the directive to be signed in the presence of the witnesses. She urges people, if need be, to complete the document and ask witnesses via virtual meetings if they would sign. Instead of signing, the space could include the date and a note about the way the witnessing took place and COVID-19 concerns.
While that does not meet legal requirements, Bruzzese believes it meets the spirit of the law. She said health care providers will use whatever means of value available to make decisions.
Rueter said for those who cannot think of someone to speak on their behalf, it is still good to have a conversation and write down wishes. Ideally, family members should have copies of the directive and revisit the document as things change.
Making decisions without such planning has "really torn apart" families sometimes, Rueter said.
In Vermont, it is not automatically next of kin who make those decisions. Bruzzese said the state is one of very few, maybe four or five in the country, to not give that power by default.
"The law is just silent on this question," she said.
Things unexpectedly happen to people regardless of baseline health and age, Bruzzese said. For example, she called to mind a 20-year-old hitting their head while skiing. She said documentation should at least make clear who can make health care decisions in situations where the person cannot.
When someone turns 18, they are legally an adult. Freeman said things get further complicated with the federal Health Insurance Portability and Accountability Act or HIPPA, which makes information about an adult patient unavailable to parties without consent or knowledge.
Rueter pointed to The Conversation Project, which started in Boston in 2010 and can be found at theconversationproject.org, as a resource for talking about such planning.
"It's acknowledged that people don't have this conversation on a regular basis, perhaps when it's most needed they don't have it," she said. "It's been found absolutely that if people have this conversation early and again over time, it's easier for everyone and people are happier with what happens. In the hospital, satisfaction rates are better. And after there's a death, the family, there's less depression and sort of less shock."
With new context given the current pandemic, Bruzzese said people are feeling the need to complete or update their directives.
"Our phones have been ringing like mad," she said.
Her group is helping with inquiries via phone and computer. She sees the process of advanced care planning as giving some peace of mind at a time where things are feeling out of control.
Locally, Freeman has been fielding calls from those who want to change some of their answers given all the attention now being given to ventilators. He said people are updating or making plans as they adjust to the situation and have more time on their hands.
His group is having people leave their name and number in phone messages. Then a volunteer will call back and help them get forms or take them through them. They also are offering to host virtual meetings through videoconferencing software. These are free consultations.
As part of precautions to limit the spread of coronavirus, the group is no longer offering in-person informational services at Brattleboro Memorial Hospital. They previously were stationed at the lobby of the Richards Building on Wednesdays.
"We're trying to be responsive even with some of the limitations we have right now," Freeman said.
April 16 is National Healthcare Decisions Day. Freeman said a banner will be hung over Main Street in downtown Brattleboro.
His group helped 285 people with advanced care directives in 2018 and 180 the year before. Freeman reported being on pace this year, prior to the pandemic, to assist about 300.
Bruzzese said the state health department has a registry of the directives online, which averages about 350 submissions a month.