"Eileen's" health was in decline. Facing liver failure and other debilitating conditions, she had to undergo an invasive procedure, paracentesis, to remove fluid from her abdomen to ease her breathing. Her physician was concerned that, as her health deteriorated and such procedures became more frequent, continuing aggressive treatment would diminish Eileen's quality of life.
The physician asked Evolent RN Care Advisor Carissa Grepo if she could help Eileen and her family through this difficult time. Working in Evolent's Advanced Illness Care program, Carissa provides resources and support to patients with severe, often terminal, illnesses to help them manage their symptoms, improve quality of life and be more comfortable at home. But first, patients and families need to be open to that help—and that wasn't yet the case for Eileen.
When Carissa called, Eileen’s sister picked up the phone. Understandably, she was concerned that Eileen would get distressed by further discussing her medical problems. The sister cautioned Carissa: Upset Eileen, and I won’t let you speak with her again.
Carissa explained that she could relate. She had assumed the role of a protective sibling years earlier when she was in nursing school and her 19-year-old sister was diagnosed with stage IV cancer. Carissa had advocated for her sister and helped care for her as the cancer eventually went into remission.
In following years, Carissa witnessed several other close relatives pass away in hospice, and she was inspired by the support that the care teams provided. The teams not only delivered excellent bedside care, but also provided explanation on what to expect next, therapeutic listening for family members who struggled as their loved one deteriorated, and hands-on instructions to care for these loved ones. "What the care teams did for me and my family was incredible," she says. "Going into this field was my way of giving back."
Speaking with Eileen, Carissa accepted that she and her sister weren’t ready for conversations about end-of-life care and that they didn’t want to dwell on Eileen's medical problems. Still, Carissa could provide a safe, trusting space for Eileen to ask questions and discuss her feelings, fears and apprehensions.
"Initially, we never talked about her illness," Carissa says. "We talked about her interests, how she was limited and what she could do to overcome these limitations."
For example, Carissa coached Eileen to eat smaller meals or have a protein shake to alleviate the too-full feeling she got because of fluid buildup in her abdomen. When vision loss prevented Eileen, an avid reader, from enjoying books, Carissa helped to set her up with audio books. As Eileen's symptoms progressed and she was no longer able to get into a car for appointments, Carissa guided Eileen on gurney transportation.
Over several months, Eileen's condition worsened and her paracentesis procedures went from monthly occurrences to weekly ordeals. Just before one of those scheduled procedures, Carissa and Eileen spoke. "I know my sister doesn’t want me to say this, but I'm really tired," Eileen confided. "I just want to go home."
The conversation crystallized what Carissa had suspected—that although Eileen was ready to discuss comfort care, she was worried how her family would react. Carissa worked with Eileen on how to initiate the conversation with her sister, by emphasizing the time involved in going to appointments and her desire to enjoy time with her son and daughter.
Eileen's sister soon informed Carissa that they were open to discussing end-of-life care. Ultimately, Eileen died comfortably and peacefully under the care of hospice in the presence of her family. Afterwards, Carissa spoke with the sister, who said she was very much at peace.
Carissa was relieved that she could help the family to consider hospice before it was too late. While Eileen's physician had taken steps to get the family thinking about end-of-life care, too often clinicians tiptoe around the subject. That deprives the patient and family of the opportunity to learn more about the process of end of life, to digest the information and to begin the process of coping and healing—sometimes before their loved one passes.
"People shy away from those discussions because they feel helpless. Even providers feel helpless," Carissa says. "But there’s an immense amount of education and support you can provide if you have the courage to have those conversations."