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Meg Gaines knows what it’s like to feel powerless and afraid in a doctor’s office. Many years ago, when her children were ages 3 and 6 months, she was diagnosed with ovarian cancer which showed up in her liver several months later.
“I was told to go home and think about the quality, not the quantity, of my remaining days,” said Gaines, an attorney and Clinical Professor of Law at the University of Wisconsin Law School.
Not satisfied with that answer, she pushed ahead to find providers willing to try new treatment avenues that could give her a better outcome. She found that experimental treatment and survived her cancer journey, but the experience left her wondering how many patients were in her same situation without the ability, resources or knowledge to push harder for treatment alternatives.
“To me, it was just unacceptable that people are so powerless at the moment when they’re most vulnerable,” she said.
Gaines’ passion led to the creation of the Center for Patient Partnerships at UW, an organization dedicated not only to providing support and advocacy for patients facing life-altering health situations, but also educating future healthcare, legal, social work and other professionals about the need for health justice and prioritizing the best interest of patients.
Center for Patient Partnerships offers free advocacy services through its graduate professional students. Patients benefit from having a knowledgeable partner that can help with matters such as seeking second opinions, communicating with care teams, and navigating insurance coverage questions. The students gain a valuable real-world view of the patient experience and the barriers that arise.
This support and added knowledge helps patients stay in control of their health care journeys and find the treatments that suit their goals and values. Gaines encourages patients facing a major health event to remember that they ought to feel comfortable that their care team listens to their concerns and explains options clearly. If not, patients have the power to find a new team.
“You are the captain of your own ship, she said, “and you need skilled healthcare partners to help you sail in treacherous waters.”
Patients should seek to build collaborative relationships with their providers that focus on questions, acknowledge unknowns, and arrive at treatment decisions that feel right to them and their team.
“Make efficient use of your team’s time: prepare questions in advance, avoid ‘what if’s’ wherever possible,” Gaines said. “Clinicians tend to avoid questions about future treatments because, by the time you need them, those options may well have changed. It’s not a good use of the time for them in most cases.”
She said patients should never worry about offending their doctor by seeking a second opinion — in fact, your own doctor is a good source for finding the best place to get one.
“Good doctors have confidence in their abilities and are never offended by that conversation; indeed they often welcome another set of eyes on the challenge,” according to Gaines.
Caregivers, often family members or close friends, would do well to have regular conversations with their patients to pick up on shifting values and goals and help them be sure those are reflected in their treatment choices.
“You can’t really understand how it feels to be in their shoes, with the diagnosis they have, so it’s important to listen and support their choices, whether they’re the ones you would make or not,” Gaines said. “You don’t want a patient to fear losing their caregiver because their choices don’t harmonize with their caregivers. So I think it’s really the sacred responsibility of caregivers to always, always be turning to the patient and saying, ‘Is this working? Should I back off or should I push harder?”
“You have to make sure to create a safe space for patients to discern what they really want.”