BY JON STONE | MARCH 26, 2019
16 times over the past five winters, an unsuspecting person took to a snowmobile or an ATV or a car, drove it onto a frozen Minnesota lake or river, broke through the ice and later died.
“I was just watching the news about a horrific snowmobile accident where the passenger on the back of the snowmobile is now in the intensive care unit and is non-communicative,” says Karen Peterson. “Decisions have to be made.”
Karen Peterson, Executive Director, Honoring Choices Minnesota
The decisions to which Peterson is referring are often literally ones of life or death. If the patient will likely never regain consciousness, should doctors remove life support allowing him or her to pass away? Or should they do everything in their power medically to keep that person alive?
“In the absence of all other information, we do everything possible to keep the person alive. And so that’s the default that we fall back to if we know nothing else,” Peterson says.
But what if the patient wouldn’t have wanted to be kept alive without having any chance of recovery, or regaining any semblance of a quality of life?
Peterson is executive director of Honoring Choices Minnesota, a Minneapolis/St. Paul-based organization whose focus is on preventing anyone from being in a situation in which their end-of-life wishes are not known and acted upon.
“No one can know what tomorrow will bring,” she says. “It’s our firm belief that all adults — everyone ages 18 and older — should spend at least a minimum amount of time thinking about what they would want to happen if they could not speak for themselves.”
The way to make sure that your wishes are known – arguably, the easy way, and unequivocally the best way to stave off an otherwise agonizing process for your family and loved ones – is to have done Advance Care Planning, which has two components. The first is to talk with loved ones about goals, values and preferences, so that the people who will be involved if something happens to you will know what you want. The second piece is to complete a Health Care Directive (HCD). These legally-binding documents let medical teams and loved ones know who you have chosen to make health care decisions for you if can’t do so yourself (in Minnesota that person is known as your Agent; other terms used include “surrogate”, “proxy”, “substitute decision-maker” or “health care power of attorney”). HCDs also allow you to express considerations for your treatment that reflect your goals, values and beliefs, as well as the specific medical treatments that you would want or not want. This might include receiving or choosing not to receive those that keep you alive artificially.
“It just makes everything so much smoother for the family, and for the health team,” Peterson says.
The problem: an estimated three out of four American adults have not filled out an HCD. And this is where matters can become complicated, especially in a state like Minnesota.
Most states have enacted laws that govern the “legal next-of-kin” who are empowered to make health care decisions for a person who does not have an HCD and can no longer communicate. Generally, the succession of decision making established in these state laws is, first, a spouse, then parents, then adult children, then siblings, then other relatives, and then friends.
But by choice, Minnesota is one of several states that doesn’t have a legally-defined hierarchy of who makes health care decisions in this situation. It reflects some concerns. For example: that a non-married partner – who would otherwise serve as the best decision-maker — would be excluded; and, that a spouse who might have been abusive and have contributed to the patient’s trauma could inherit decision-making responsibility.
So while Minnesota’s and some other states’ law might address inherent flaws in pre-determined next-of-kin decision making, it leaves, unresolved, the gaping question of “who, then, will decide”?
Honoring Choices – the advance care planning model that began in Minnesota and now exists in eleven other states –aims to address the existential implications of this question.
Most fundamentally, Honoring Choices Minnesota is attempting to inspire as many adults as possible in the state to start their Advance Care Planning and complete a Health Care Directive, and to help prepare health care teams for situations where there are ambiguities or unanswered questions.
The key is education. The organization spans the far reaches of the state to help numerous entities – health systems, community centers, religious institutions, local clinics – with their Advance Care Planning efforts. In addition, it trains health care professionals to have the skills and confidence to hold challenging conversations with patients and their loves ones.
Central to this effort is a process of sharing information, technology and best practices that Honoring Choices Minnesota established with the Twin Cities’ largest health systems a decade ago when they each decided to incorporate the model and work together to execute it.
“From the very beginning that’s been our base that we built on, that in this one area of health care we are not competing. We are working with each other and we are helping each other,” Peterson says.
This non-competitive collaboration has since expanded well beyond the Twin Cities area. As patients increasingly switch doctors, specialists, health insurance companies and geographies, migrating from one health system to another, it’s becoming easier for their electronic medical record (EMR) to be accessible to their new health care team in any participating system. If a patient’s HCD is included in their EMR, the health care team can quickly access and understand the patients’ wishes for their care.
But one of the most potent contributions which Honoring Choices Minnesota makes to the HCD movement is guidance in training health care teams on how to make the correct decisions.
This is a formidable process with correspondingly high stakes.
Sometimes, it involves locating and talking with the agent named in a patient’s HCD, if that person is not physically present and, when notified of the situation, had no awareness of being chosen for that role.
“There would need to be a discussion of ‘why do you think your uncle picked you?’ and exploring the relationship”, says Peterson. “The attempt would be to spend some time really talking with that agent. Maybe if you can get the nephew talking, he may all of a sudden remember, ‘oh my gosh, you are right. I did talk to Uncle John and we talked about being on a respirator and he said he never wanted that.’ So a well-trained advance care planning communicator would probe for that kind of information to facilitate the best decisions for the patient.”
More frequently, the health care team finds itself needing to navigate a waiting room full of relatives in the absence of an HCD or a named surrogate.
“If there’s no disagreement, if a physician comes in and says ‘this is what we think we need to do for your mother, or sister, or brother-in-law, and they present their recommendation to the group of caring people who are in the hospital, and everybody says, ‘Absolutely, let’s do it,’ then you can move forward,” she says.
“It’s when the physician presents a status report and makes a recommendation, and you have five people in the room and five different reactions to that recommendation, that’s where we have to figure out, ok, how do we come to agreement? Because if you have five people and five different opinions, how are you going to determine what the patient would have wanted if you don’t know who the patient trusted above all others to make those decisions?”
“Sometimes one of them is a really strong, forceful personality, who overtakes the power of the group, and ends up making decisions. Then, later, you find out that in fact, the patient’s preference would have been the quiet and thoughtful cousin, but it was never written down legally,” Peterson says.
Educating health teams throughout the state on how to gather facts and nuances, and “read the room” full of well-meaning loved ones, has converted the uncertainty surrounding undeclared health care wishes into more confident decisions on what type of care to administer.
“They talk with the family, they look who is there, they look at the interaction, they look at the legal and relationship connections,” Peterson says. “Most of the time, the vast, vast majority of time, they land on the right person.”
A pre-existing HCD avoids this need to troubleshoot in the first place. The most recent data in Minnesota, based on a self-reporting phone survey conducted by the state’s Department of Health in 2017, showed that 36 percent of the state’s adults had successfully completed an HCD – higher than the national average, which is around 25 percent. Participation is lower among young adults and far higher among those who are older; some Minnesota health systems report that 90 percent or more of their patients who are 65 and older have filled out an HCD.
“People think about it for a long time, they come to our info sessions, they hear about it, they get the document, take them home, they put them on their desk, they get covered up by other papers, and a year and a half later, they’re looking for something else and they come across it and they go ‘oh – yeah, I guess I should really do something with this.’”
Statistically, the health care wishes of the two 60 (+) year old people who recently broke through the ice and died in Minnesota, were likely expressed through a Health Care Directive. Those of the four people between 18 and 29 who suffered that fate, were likely not.
“We’re making progress,” Peterson says. “It’s not going as fast as we like, but we are definitely making a difference.”
