By NANCY FRAZIER O'BRIEN
April 15, 2020
Although National Healthcare Decisions Day has been marked on April 16 for more than a decade, its observance this year takes on a particular urgency due to the swift and sometimes deadly nature of COVID-19, the disease caused by the novel coronavirus.
The COVID-19 pandemic "is helping us as a people to think about what matters most to us," said Dr. Matthew Gonzales, chief medical information officer at Providence St. Joseph Health's Institute for Human Caring in Gardena, California. "To me that is essentially what advance medical planning is all about."
But the legal requirements surrounding advance medical directives can sometimes bog down the process, especially when a self-quarantined population has limited access to the needed witnesses, a notary public or sometimes even a printer.
To fill that gap, the Providence St. Joseph institute developed a simple "trusted decision maker" form with only two questions as an easier alternative to a formal advance directive. It is not a legal document, so no witnesses or notary is needed. "The institute has partnered with Cake, a free digital platform for end-of-life planning, to make the form more widely available. In a statement on Cake's website, Dr. Ira Byock, founder and chief medical officer of the Institute for Human Caring, attests that the document "will be taken seriously by a clinical team."
The form asks for the name and contact information of a "trusted decision maker" who can speak for the patient if he or she loses decision-making capacity. It also asks the patient to choose from among four options as guidance to both the medical team and family members.
Down to basics
The options are:
- "I am not sure at this time which statements below I most agree with. I trust my health care agent to do what is best for me.
- "I want to continue living even if my quality of life seems low to others and I am unable to communicate with people. In general, I would accept support of my breathing, heart and kidney function by machines that require me to be in a hospital or special care unit.
- "Life is precious, but I understand that we all die sometime. I want to live as long as I can interact with others and can enjoy some quality of life. I would accept intensive treatments only if I had a reasonable chance of getting better.
- "It is most important to me to avoid suffering. I do not want extraordinary medical treatments, such as breathing machines" or cardiopulmonary resuscitation.
"On any given day people may not know what specific treatments they want or would refuse, but most adults can tell you who they would trust to speak for them if they were in a critical life situation," said Byock.
Lifting a burden of care
"This public health crisis offers opportunities for us to reinvest in what matters most, and for everybody I know, the top of that list is our families," he added. "One way of caring for the people we love is to have these conversations, as hard and uncomfortable as they may be."
The trusted decision maker form became formal policy at Providence St. Joseph in November after vetting by clinical and legal corporate teams and the system was "working to create a systemwide rollout" when the coronavirus pandemic hit earlier this year, Byock said.
Suelin Chen, co-founder and chief executive of Cake, said end-of-life planning "has always been something everyone 18 and over should do, but it's even more urgent now."
Providence St. Joseph Health’s Institute for Human Caring’s National Healthcare Decisions Day – COVID-19 toolkit, includes this poster encouraging patients to complete their advance directives.
It's not just about getting the health care you want, she said, but about removing burdens about those decisions from your loved ones and from the front-line medical professionals working with limited resources.
Gonzales agreed. "This year not only is National Healthcare Decisions Day a reminder of what is personally prudent, but also of what is socially responsible," he said. "The last thing we want to do is to inflict ICU treatments on people who would not have wanted them."
Chen said the Boston-based Cake — so named as "a warm and inviting symbol of celebrating and honoring life," according to the website — experienced a 427 percent increase in those completing an end-of-life plan during the month of March and a 165 percent increase in those who shared their plan with others.
The site, with more than 1,000 articles and interactive tools for end-of-life planning, receives more than a million hits each month, she said.
The COVID-19 pandemic is "changing everyone's relationship with mortality," Chen said. "There's so little we can control in this world now, but we can control guidance about our health care decisions."
National Healthcare Decisions Day, begun in 2008 by a Virginia health care attorney, has been sponsored since 2016 by The Conversation Project, an initiative of the nonprofit Institute for Healthcare Improvement.
A 2018 survey by The Conversation Project found that while 92 percent of Americans say it's important to discuss their wishes for end-of-life care, only 32 percent have had such a conversation.
"We all have that little to-do list of things that fall further and further down the road," Gonzales said.
"This crisis is casting a bright light on what healthy adult behaviors have always been, but which now have become critically important," said Byock, who serves as an adviser to The Conversation Project.
The trusted decision maker form "is a good-faith effort to elicit and record people's choices for who speaks for them and their general preferences for care," he added. "The best practice is for all adult patients to have an advance directive on file, but when that's not possible the trusted decision maker form is the next best thing."
The Trusted Decision Maker form can be accessed here: www.joincake.com/trusted-decision-maker.