Healthcare decisions are not only about treatments and interventions – they encompass every aspect of the individual and family’s life.
That’s why one of the roles patient advocacy groups play is to give people living with a life-altering diagnosis, their families and caregivers, the support they need to participate in their own health journey.
Andrea Eidelman, Chief Executive Officer at stomach cancer support group Debbie’s Dream Foundation: Curing Stomach Cancer (DDF), says that the foundation encourages patients to be active advocates in their care because they need to work with their medical teams and providers to determine what’s right for them.
“Every patient, every family, every situation is different, and it’s very important for people to have the knowledge and information they need to decide what is right for their healthcare,” Andrea says.
In life-limiting conditions such as stomach cancer, it’s especially important to involve patients and caregivers in the decisions traditionally made by doctors alone, such as levels and types of care, she adds. “Some patients towards the end of their lives, for example, might want to stop treatment if they don’t see a long-term benefit. They may choose to enjoy that time with their families, creating memories.”
“There could be end-of-life decisions to be made and financial issues that go hand in hand with somebody not being able to work,” she notes.
Andrea believes that it is essential to empower people to play a role in shared decision-making and it involves working directly and closely with families to determine what their goals and needs are.
At DDF, which was founded in 2009 to support people affected by stomach cancer, supporting caregivers is part of this holistic and family-oriented approach.
Caring for the caregivers
“Caregivers in our community do so much. They’re the ones who cook the meals, take the patients to their doctor appointments and provide the emotional, psychological and financial support people need when they are on a cancer journey,” Andrea says. “That’s why utilizing a holistic approach that encompasses the entire family is so important.”
“We help with all those decisions and provide emotional support through our mentoring program,” she says. “We match people based on criteria such as geographic location and cancer staging,” adding that mentors are usually patients or caregivers with their own personal experiences of stomach cancer.
Some mentors are or have been caregivers themselves, meaning they understand the day-to-day reality of looking after someone who has cancer, Andrea notes. They offer support and guidance, as well as advice on dealing with difficult issues, such as how to tell children their parent is seriously ill.
Caregiver role in decision-making
Caregivers also need to be supported in order to effectively play their vital role in shared decision-making, Andrea explains.
“It’s important to look at all the factors involved when somebody receives a cancer diagnosis or is going through treatment: their emotional needs, their support system, resources and finances, and where they’re going to seek treatment.
“Because treatment centers are throughout the country, many people with stomach cancer have to move or relocate to enter into clinical trials,” Andrea observes. “This means the family dynamics come into play when making treatment decisions.”
According to Andrea, there’s no one-size-fits-all approach to working with caregivers. Instead, it is important to understand and react to each family’s individual needs.