One of the hardest decisions terminally ill patients may face is deciding when it’s time to stop treatment and humanely end their suffering.
Helping these patients retain some control over their lives, including the ultimate decision of if and when it is time to let go, is a crucial part of Andrea Miller’s job as a licensed clinical social worker at the Simms/Mann UCLA Center for Integrative Oncology, where she specializes in treatment of patients as part of California’s End of Life Option Act (EOLOA).
“Our role as clinical consultants is to support patients through the EOLOA process by reminding them of their autonomy, empowering them to dictate the direction of their treatments, and ensuring their wishes are respected and fulfilled with dignity and empathy,” said Miller, LCSW.
Miller says she does not give specific advice to patients and their families, but instead presents them with options and information, in compliance with state guidelines.
In California, patients who meet certain criteria are allowed to ask their physicians for medication to end their life on their own terms.
"We remind them often that they are in charge. The patient can pursue the End of Life Option if they choose, but they are under no obligation to go through with it,” Miller said.
By the time they meet with Miller, her patients typically have put a lot of thought into end-of-life choices.
“I do think that most of the EOLOA patients have an understanding of what they want, or don’t want, from their experience with death,” Miller said. “Understandably, there is often fear or anxiety around death or leaving their loved ones.”
Miller said she tells patients that they do not have to move forward with the End of Life Option Act process unless they are absolutely ready. Some patients take the medication home but choose to never ingest it.
“Ultimately, it comes down to choice,” said Miller, who meets with patients and assesses them for unmet needs and, if needed, will make referrals to other services that are aimed at improving quality of life.
“With everything they have been through to this point, we make sure they know that they have all the control,” she said. “If they want to wait, then that is a completely appropriate decision and we support them on that.
"Our role is to walk beside them as they make these extremely important decisions. Because all of the EOLOA patients are terminally ill, there is also opportunity to work on legacy projects or to do meaningful Life Review Therapy,” Miller said.
“I’ve always been drawn to the medical field, and as a social worker, I was attracted to the philosophy of treating the mind, body and spirit for better health," she said. "So, the holistic approach at Simms/Mann is exactly the kind of program I wanted to be involved with.”
Inspired by her patients
Miller said she draws inspiration and wisdom from her patients and their families, and their struggles.
"Getting close to people going through this really puts things into perspective for me. It has allowed me to be more present and enjoy the precious gift of life," Miller said. "It is truly inspiring to support individuals who, despite facing the challenges of mortality, maintain a beautiful perspective on life, embracing joy and gratitude for what they possess.”
Miller said she feels their emotions while helping them navigate the system. She recalls a recent case of a patient with terminal ovarian cancer. She was considering the End of Life Option because of the extreme pain and suffering she dealt with daily.
"But while her body was getting close to the end, her mind just wasn't ready to go," Miller said. "For this brave woman, although she was in such pain, she still got such joy from just having a cup of tea with her husband, or sitting outside and watching the sunset together.
"So there was this conflict between her mind and body,” Miller said. “I don't have the answer. No one does. For a case like that, our role is to be there for them, supporting them, helping them to process these emotions and conflicts that are happening internally. I would meet with her and her husband, and it was really about having the space for them to talk about fears, death and dying, and their quality of life. We give them whatever support they need while making their own decisions."
While most of the focus is on the patient, Miller and other Simms-Mann caregivers also offer their services to the loved ones. They can partake in wellness activities, including yoga and counseling, and Miller helps them navigate Simms-Mann services such as art therapy and mindfulness mediation, along with other resources in the community.
Clinicians supporting clinicians
Dealing with such emotion on a daily basis, providers such as Miller often benefit from professional support as well. They get that in the form of weekly consultation meetings with Simms-Mann staff. Though they focus on clinical details and experiences with patients, Miller said, it sometimes serves as a support group for those who may experience what social workers call countertransference from being close to chronic and terminal patients.
"The weekly meeting is an excellent opportunity to process a lot of these feelings with one another, while also comparing clinical notes. At the end of the day, we have an idea of what each of us is working with every day and the level of support that we’re providing," Miller said.
Much of this type of support from colleagues is less formal, and Miller said she regularly talks with co-workers about cases and handling their feelings.
"Doing this kind of intense work, I'm just very fortunate to be at a place with such amazing and caring people who support each other," she said. "That keeps us grounded so we can be there for the patients who need us."
