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“They Made Me Feel Like a Person”: Palliative Care Counseling Changes Lives for Patients, Families

The patients are not the only ones who receive care at the University of Alabama at Birmingham (UAB). Counseling for the patients and their family members is an integral part of the UAB Center for Palliative and Supportive Care.

The Palliative Psychology and Counseling Services program has provided more than 25,000 patient and family caregiver contacts since its inception in 2006.

“We partner with seriously ill patients and their families to provide patient- and family-centered care,” says Sylvia Huang, PhD, a psychologist with UAB’s Palliative Psychology and Counseling Services. “Our team provides professional counseling support to the patient and the caregivers in both inpatient and outpatient settings. That adds a much needed extra layer of support when coping with serious or terminal illnesses.”

The support is integral for the care of the patient and their loved ones. For Rita Buchanan, the counseling program has been life-changing.

“They made it bearable,” Buchanan says. “I felt like someone else cared about not only him, but also me.”

Buchanan’s brother, Charles Kelley, passed away in November after battling leukemia. As his primary caregiver, Buchanan says Huang helped her prepare to bring him home for hospice care, and also supported her while he was staying on the palliative care unit.

“They helped me long before he died. They sat with me. They helped me process different things for him and what we were to expect,” Buchanan says. “They would just come in and sit and talk with me about what was happening and what was coming.”

Buchanan is referring to the bedside psycho-oncological counseling support she and Kelley received while he was on the Hematology Oncology Specialty Unit for treatments. They were frequently visited by counselors who helped them address depression and anxiety, and cope with uncertainties associated with Kelley’s complicated symptoms.

Part of the counseling process is to help make sure the caregivers and loved ones do not forget to take care of themselves.

“A lot of times, especially for inpatient patients, we see that the caregivers neglect their own health,” says Kay Knowlton, PhD, a counselor in the Center for Palliative and Supportive Care at UAB. “They are so focused on the patient and making them comfortable that they forget to take care of themselves. We are there to address this and help them have an outlet where they can talk about their stress and we can work on ways to reduce stress, which helps the caregiver and the patient.”

“They made me feel like a person, not just another caregiver,” Buchanan says. “They made me feel like I was part of their family. That was everyone: nurses, doctors, counselors, the food service people. Everyone made me feel like I was part of the family.”

The Gift of a Legacy
The counseling team continues to counsel Buchanan after her brother’s death, providing grief support counseling sessions via phone and also connecting her with other support services. But to many caregivers, one of the most enduring parts of the counseling services is the gift of a legacy.

While perusing a local craft store, Huang came up with the idea to pair the thumbprint of a patient with one of a family member to create the shape of a heart as one of the palliative care legacy creation projects called “Thumbs Up for Love.”

“The thumbprints provide an opportunity to engage patients and their loved ones and create memories for the entire family and help with their grieving process,” Huang explains. “They get to give each other a big thumbs-up, letting them know that you are the best mother, father, son, daughter, brother, sister, wife, or husband as a way to express love and appreciation. It’s not uncommon for us to get requests to make 10 to 20 thumbprint cards for the whole family to treasure, including those who weren’t able to be here.”

The thumbprints are not as invasive as making a print of someone’s hand and it does not interrupt clinical work with the doctors and nurses.

Buchanan keeps her brother’s thumbprint with her every day.

“It is a piece of him that I will always have. It is unusual. Nobody else has his thumbprint,” Buchanan says. “I keep the thumbprint with me all of the time. I wrote on the back of it ‘rest in peace’ and his date of birth and the day he died.”

The thumbprints were also made into the shape of hearts with his grandchildren and great-grandchildren, including an infant.

Supporting Other Areas
Palliative care is not the only area where counselors and psychologists provide support. The group also works with patients and family members in other areas of the Division of Gerontology, Geriatrics and Palliative Care and the Division of Hematology and Oncology. This includes the Supportive Care and Survivorship Clinic, the Acute Care for Elders Unit, the Geriatrics Clinic, and the Hematology Oncology Specialty Unit.  

“Although we focus a lot on grief support, our focus is also a wide range of issues related to coping with a diagnosis,” Knowlton says. “We work with our patients from the time they are diagnosed until they are no longer facing a serious illness.”

This specialized psychosocial care team helps address issues including managing distress, depression, anxiety, or posttraumatic stress associated with diagnoses and treatments. The team also helps patients and caregivers to feel less overwhelmed and more in control, as well as improving self-care and communication with loved ones and their health care providers. They do this using evidence-based approaches such as supportive expressive therapy, cognitive behavioral therapy, mindfulness-based strategies, and acceptance and commitment therapy.

“We want people to know we are here. It is so important to start palliative and supportive care at the early stages of an illness. It is not just end of life,” Huang says. “Our goal is to alleviate emotional suffering and make the journey a bit easier during the most difficult times. The most rewarding thing is when someone says, ‘I just don’t feel so alone anymore. I feel heard and treated like a whole person again.’ We get that a lot.”

To find out more about UAB’s Palliative Care Counseling and Psychology Services, visit the Center for Palliative and Supportive Care website.

— Source: University of Alabama at Birmingham