CHARLOTTE – The 95-year-old patient had suffered a mild stroke. Dr. Colin McDonald knew repairing her blocked artery was a serious operation and some wouldn’t consider it for a patient of that late in life.
“What makes you happy? What drives your day-to-day joy?” he asked. As a former college softball player, she tried to watch as many Atlanta Braves games as possible. “That’s what I live for,” she told McDonald. Given her mindset and her health, he recommended the procedure, knowing it was her best shot at keeping up with her beloved Braves. She had the operation.
He last saw her in 2019. “I still hear from her,” McDonald said. “She sent me a note recently to let me know she’s still doing great.”
Guided by Choices and Champions
The conversation McDonald had is part of Novant Health’s goal that every patient’s wishes be known and honored. To do that, the system has pioneered a transformative program called Choices andChampions® to help patients and care teams talk through the situation. These conversations are also promoted this month as we recognize National Healthcare Decisions Day on April 16, which educates the public about the importance of advanced care planning.
Choices and Champions have two goals. One, get all of us to consider the “choices” around our care if we face a potentially life-threatening injury or illness and document them. And second, choose a health care“Champion,” who will speak for us if we’re unable to make our own medical decisions. In 2020, NovantHealth received the American Hospital Associations’ prestigious 2020 Circle of Life Award, which honors innovative palliative and end-of-life programs that can be models for other health systems.
Choices and Champions also provide resources for patients to start conversations with their loved ones, understand their care options, and make those decisions now – so that their wishes are clear to their care team and, most importantly, to those who matter most to them.
An important topic for all patients
As a neurohospitalist, end-of-life care is always top of mind for McDonald. He cares for critically ill stroke patients and others with neurological injuries, including head trauma. He primarily works with patients in the Comprehensive Stroke Center at Novant Health Forsyth Medical Center, where he is also department chair.
He has seen patients slip from being coherent to comatose in a matter of hours — so he knows it’s critical to learn what their wishes are. One of his first questions: Who do you trust to speak for you if you aren’t able to speak for yourself?
Part of McDonald’s job is to make sure his patients have a Champion listed in their electronic health record (EHR). Just as important is to detail what type of care the patient wants in the advance care planning section of the EHR. By clearly documenting these wishes and appointing an advocate to carry them out, it puts patients in the driver’s seat of their own care. And we all want to be in control of our own care.
Documenting these conversations has not always been easy. McDonald remembers when planning notes were handwritten in three-ring binders during his residency and fellowship at MassachusettsGeneral Hospital in Boston. Now they are part of the online medical record and can be easily referred to– and updated – by any care team at any location.
Don’t leave your family in doubt
When patients don’t make their wishes known, it puts a tremendous burden on their families. Now they are left to guess. Would she want a feeding tube? What would he say about a ventilator?
In his 28 years of caring for patients, McDonald has never encountered a situation where loved ones eventually did not come to an agreement about end-of-life care plans. “Once you let families know that the patient’s decision was done with a lot of planning and foresight,” he said, “they realize this is what their loved one wanted.”
When Champions struggle with decisions
Some individuals tasked with the Champion role are at a loss about what to do when the care team comes to them for answers. “It’s our job to help walk them through this,” said McDonald. It also illustrates the importance of having details documented in medical records. When there are no notes, then the topic turns to an ongoing discussion with the Champion that may last for days.
“We talk about the patient’s loves, their life goals. What would they consider a full, productive life? If they couldn’t talk or feed themselves, would they want to pursue medical treatment? Or would they want to focus on comfort and dignity?” he said.
The biggest misconception around end-of-life care
One of the biggest misconceptions is that an end-of-life care plan means “do not treat” the patient if the situation becomes dire.
“That isn’t what it means at all,” said McDonald. Instead, “it means certain treatments make no sense because they’re not in keeping with the patient’s choices. It never means ‘do not treat,’ because one of the most important things we as medical professionals do, is offering a caring environment. We offer comfort. We offer empathy. While we may stop treatments, we never stop care – no matter what limits we put on medications, machines, and monitors.
“I think one of the things that surprise people is just how easy it is to talk about what are your loves, your desires, what you look forward to every day.” Then those discussions can lead to a framework that helps determine what makes sense for this patient. What is too much? What is too little? All of those discussions are going to be guided by what the patient has shared with the care team; with their champion and those who matter most to them; and what is documented as part of their advance care planning.
“We want to make absolutely certain that the patient’s care is done with comfort and dignity and honors the patient’s prior wishes,” said McDonald.
What does McDonald’s own advance care plan look like? “There are things that I really enjoy. I enjoy cooking. I enjoy reading. I enjoy listening to music. I enjoy exercise. I enjoy being with family. That’s architecture for my Champion to make decisions for me,” he said. “If I were to be deprived of several of those permanently, my Champion understands that is no life that I would feel worth living. And we would focus on comfort and dignity.”
Talk to your healthcare team
Outlining what is important to you now, as well as any particular wishes you have about medical care, better enables your wishes to be honored and takes the burden of guessing off loved ones who may be called upon to speak for you.“
It really is a gift to your family and loved ones to do this,” said Dana Thomson, manager of advance care planning at Novant Health. “In an emergency situation, loved ones are dealing with a lot of stress. This is one burden you can take off them.”
Through Choices and Champions, Novant Health provides planning tools, step-by-step guides, and personalized support from one of our Choices and Champions team members to ensure your decisions are known and can be honored. For more information, visit NovantHealth.org/ChoicesandChampions.Then share your wishes with your Champion, those who matter most to you, and your care team.