The Heart of Care: A Terminally Ill Patient Finds the Support to Take on Her Bucket List

January 7, 2020

Like many patients with a serious illness, "Jane" was more focused on keeping her family's spirits high than on her own. A sense of duty was leading her to soldier on with an aggressive cancer treatment regimen.

But when Evolent Health RN Care Advisor Wendy Haas met with Jane at the start of a care management program, she saw how Jane's cancer treatments had diminished her quality of life. A lifelong flutist, she was losing her ability to play the instrument due to chemotherapy-induced neuropathy in her fingers. One chemotherapy medication had recently caused Jane to lose weight and become very sick, resulting in the latest of several hospitalizations. Feeling weak and becoming depressed, she couldn't take part in many activities she enjoyed.  

"A lot of patients just do what the oncologist says," Wendy says. "They don't ask what it means to their quality of life, or whether the benefits of treatment will outweigh the side effects."

"A lot of patients just do what the oncologist says. They don't ask what it means to their quality of life, or whether the benefits of treatment will outweigh the side effects."

Wendy also recognized that Jane was struggling to admit to herself, and to her family, that her cancer was terminal. She had not discussed her wishes with her loved ones or thought about how she wanted to spend her remaining time.

However, there was still time to change course, and Evolent's Advanced Illness Care (AIC) program could help make the transition.

The AIC program provides education, resources and support to patients who have chronic or serious illnesses that could result in death in one to two years. Care Advisors work closely with patients, as well as their primary care and specialty physicians, to help them develop care plans that respect their wishes while managing their symptoms.

Wendy finds that the AIC program is both challenging and immensely fulfilling. More than working one-on-one with a patient, success often requires pulling in other resources and engaging family members to meet the patient's needs on a whole-person level.

Those skills were needed as Jane's illness progressed. Wendy coached Jane to have difficult and honest conversations with her adult children about her wishes and advance directives. Jane also helped to facilitate a family meeting, in which Jane was joined by one of her children in person and other siblings and children joined remotely. After this meeting, Jane had all her advance directives, including her living will, and a health care power of attorney in place.

Meanwhile, Jane switched to a less aggressive approach to chemotherapy that relieved her pain, weight loss and neuropathy. As her side-effects decreased, her hospitalizations also declined dramatically.

With a new treatment plan in effect and challenging conversations completed, it was time for Jane to focus on best ways to continue living her life. Jane took Wendy's recommendation and enrolled in a local YMCA program, which promoted physical strength and emotional support for cancer patients.

"Through that she developed a really nice support group locally that was very beneficial for her," Wendy says.

Wendy also urged Jane to think about her "bucket list": What did she want to do with her remaining time?

After about a year, when Jane graduated from the care management program, she didn't have an answer. But several months later, Jane called to thank Wendy and let her know that she had checked a big item off that bucket list. She had taken a "chemo vacation" to Europe with her family and had had a wonderful time. Although Jane's disease had continued to progress, she was appreciative for the extra strength and encouragement she had received through the program.

For that last year, "she was able to have a really fulfilling life."

About The Heart of Care
Every day, members of Evolent's care management teams use their clinical expertise and problem-solving skills to help individuals overcome serious health challenges. The Heart of Care series tells stories from the field that highlight their dedication to patients. For more information, see the blog post by Evolent CEO Frank Williams.
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