Organization Skills Required: Coordinating Medical Care for Your Loved One
Family caregivers of a loved one with cancer wear many different hats: nurse, chef, driver, financial planner, housecleaner, physical and emotional supporter, and more. Many caregivers also find themselves playing another vital role: care coordinator.
Cancer Support Community (CSC) is a non-profit organization dedicated to uplifting and strengthening people impacted by cancer by providing support, fostering compassionate communities, and breaking down barriers to care. CSC’s CEO, Debbie Weir, has personal experience as a family caregiver; she lived with and took care of her brother during the last few months of his life before he died of esophageal cancer, and she is currently helping to coordinate care for an elderly parent on dialysis.
Debbie Weir
Weir said one of the most important roles a family caregiver can play is to be an advocate for their loved one. “Health care is an incredibly complicated system,” she said. “Often, patients don’t feel empowered to ask questions or well enough to speak up, and without a loved one by their side to advocate for them, they may not push for answers.”
Frankly Speaking About Cancer
CSC offers a variety of resources to cancer caregivers, including its Frankly Speaking About Cancer series. Here, we summarize some of the common care coordination responsibilities CSC identified in the series:
- Researching Diagnosis and Treatment Options: Caregivers may find themselves researching medical information to better understand their loved one’s diagnosis, treatment, side effects, and care plan. They may also research doctors, hospitals, and clinical trial opportunities.
- Scheduling doctors’ appointments: There will be many appointments for checkups, treatments and diagnostic tests. Caregivers may be called upon to provide or coordinate transportation to and from appointments. Keeping a notebook or online spreadsheet with names, contact numbers and a calendar of appointments can help things run smoothly, especially in times of emergency or questions.
- Meeting with the health care team: When caregivers attend doctor’s appointments with their loved one, they can take notes, ask questions, and be a sounding board. Preparing a list of questions ahead of time will help. Upon your loved one’s initial diagnosis, ask their care team for any forms that need to be filled out in order to have permission to attend appointments and receive information. If your loved one is in the hospital, get to know the nurses who care for them. Meet the attending doctor and explain you want to know about important test results and medical decisions. Find out when the doctor visits patients so you can be there to ask questions.
- Managing medications: Your loved one may have many medications that change frequently. Coordinating, filling, and administering prescriptions can be a job in itself. Work with your loved one’s pharmacist or healthcare team to understand instructions, refills, and dosing. A pill box or chart may help you keep track of what medication to give when.
- Navigating insurance and billing concerns: If your loved one needs help navigating insurance issues, you can offer to contact the insurance company to learn what is covered and what isn’t. Pose questions about coverage beyond standard treatment, such as transportation to/from clinics, in-home medical assistance following treatment, out-of-network care, medications, etc. As with health care team access, your loved one will need to give permission for their insurance company to communicate directly with their family caregiver.
- Making treatment decisions: Helping a loved one think through treatment options, goals, and priorities may feel overwhelming. You may want to offer help weighing the pros and cons of each treatment option, including elements like time, where treatment will be given and cost. You can also help them think through reasonable short and long-term expectations. Weir noted that it’s imperative for caregivers to be flexible and respect their loved one’s wishes when making decisions, even if you disagree with them. “Continue to communicate and support your loved one in their choices and help them feel like they have autonomy and control over their lives,” she said.
Weir acknowledged that treatment decision conversations can be difficult no matter where the patient is in their cancer journey. Whether finding the best care for the diagnosis or seeking out a second opinion, a caregiver can be a critical part of the patient’s experience. Weir recommended that caregivers who are acting as care coordinators work with their loved one to prepare supporting documents including a living will or advance directive; durable power of attorney for health care; financial power of attorney; a do not resuscitate (DNR), do not intubate (DNI), or allow natural death (AND) order if requested or desired by the patient; and a will. These documents will be especially important, she said, if the loved one is no longer in a position to speak for themselves.
Caregivers Can Access Support from Cancer Support Community
“Health care providers are under a tremendous amount of stress these days, and while their main focus should always be on the patient, caregivers need support as well, so they can help their loved one through the experience of having cancer,” said Weir, who calls for an increased recognition from the health care system as a whole for family caregivers and care coordinators. “Organizations like Cancer Support Community are here to help and advocate for families living with cancer, and we do it at no cost to patients and their families.”
One service is MyLifeLine, CSC’s secure, online community where patients, survivors, and caregivers can connect with friends, family, and others like them to receive social, emotional, and practical support. Caregivers can join their personal network together to keep family and friends informed about their loved one’s treatments and other updates. A helping calendar is also available to organize help with events like rides to medical appointments, meals, childcare, pet care, and more. The site also has a 24/7 online discussion forum for caregivers that is moderated by mental health professionals. Here, caregivers share practical tips with others in a place where they can feel safe and supported. Learn more and sign up at www.cancersupportcommunity.org/mylifeline.
Other services include their Cancer Support Helpline, a free telephone (888-793-9355) and web-based chat service, staffed by trained oncology community navigators and resource specialists who can help patients and caregivers get information about cancer and cancer treatment options, identify local support groups, find treatment lodging and transportation resources, navigate financial issues and more.
“Our trained navigators do a lot of legwork to help relieve the burden on patients and their caregivers,” Weir said. “They’re also there to lend an ear and provide emotional support.”
Caregivers can also find support at any of CSC’s 190 network partners locations. “Whether in person or online, we’ve built a compassionate community of caregivers who are all in a similar situation,” Weir said. “It is so important as a caregiver to have hope and a sense that they are not alone.”