Chemo Buddies provide comfort, hope to patients with cancer
As Jill Kincaid watched her sister valiantly fight triple-negative breast cancer, she saw the tremendous physical impact the disease can have.
When she began accompanying her sister, Karen Williams, to chemotherapy infusions, she witnessed the emotional toll that treatment can take — particularly on those patients who sat by themselves in silence for several hours, tethered to an IV.
“There are so many people alone during chemotherapy who could use some extra attention, help and comfort,” Kincaid said.
A month after Williams’ death from cancer, Kincaid founded Chemo Buddies, a 501(c)(3) nonprofit organization that brings trained volunteers into the treatment room so no one ever has to go through chemotherapy alone.
Program volunteers spend time in treatment rooms with patients receiving chemotherapy, providing companionship and performing small tasks to ensure a more comfortable experience.
“When a patient stops me to tell me what a difference we are making in the treatment room, my heart smiles,” Kincaid wrote in a program description on the Chemo Buddies website. “To me, this program is creating a living legacy to the kindness of my sister.”
A desire to give back
When Williams received her initial breast cancer diagnosis in 2006, she went to every treatment alone.
“Once you’re diagnosed with cancer, you have so many doctor’s appointments, scans and bloodwork,” Kincaid said. “Our family already was stretched thin trying to help her, and she didn’t want to be a burden or ask anybody for one more thing.”
That changed in 2010 when Williams — a private person who rarely spoke about her health challenges or prognosis — developed recurrence of triple-negative disease.
She told Kincaid she could accompany her to chemotherapy treatments at Oncology Hematology Associates of Southwest Indiana.
Kincaid can still picture the sterile, quiet infusion suites.
Patients sat in recliners next to small tables. With no television or radio — and nothing but a window or wall at which to stare for the duration of their 4- to 8-hour treatments — their minds wandered in a silence interrupted only by an occasional visit from the on-duty nurse.
Kincaid and Williams tried to make the best of the dreary environment.
“We would laugh, play games and tell stories,” Kincaid recalled. “Karen couldn’t believe how fast the day went when we were together and she wasn’t alone.”
Williams soon began referring to Kincaid as her “chemo buddy.”
When the sisters noticed several other patients arrived alone for chemotherapy infusions, they decided to “adopt” them.
As Williams received her infusions, Kincaid would chat with other patients. She would get them blankets or snacks, and help them with basic tasks to allow nurses and physicians to focus on treatment-related matters.
With that, an idea was born.
Seeing how simple actions could lift the spirits of others, Kincaid and Williams began searching online for organizations that addressed this need.
“We could not find anything,” Kincaid recalled. “When Karen passed away, I decided I was going to make that happen.”
Kincaid approached Williams’ hematologist/oncologist, Anthony W. Stephens, MD, with her idea for the Chemo Buddies volunteer program.
“Initially, there was some apprehension on the part of the nursing staff that the volunteers would be a nuisance, both physically and in terms of conversation,” Stephens said.
Kincaid persisted and ultimately persuaded Stephens to give the program a try.
“I spoke to the nurses who work in our center to make certain volunteers would be able to integrate with the staff and not step on their toes,” Stephens said. “We really wanted volunteers to be an asset instead of ‘being in the way.’”
The care team established several ground rules for volunteers.
They must understand HIPAA laws and are prohibited from answering medical questions that patients ask. They also are told to think of the nursing staff as “kings and queens,” Kincaid said, agreeing to give them whatever they need to ensure patient safety and comfort.
Volunteers also must be mindful of how they speak.
“They can never tell a story about someone with cancer who died because, no matter how great the story is, it can set the patient’s mind on a path of fear,” Kincaid said. “They also can’t talk about things like a new diet, because we don’t want people receiving chemotherapy to lose weight.”
‘There is always hope’
Seven years after Chemo Buddies launched, the program’s benefits are apparent, Stephens said.
Volunteers keep patients occupied and help take their minds off their fears. They also help reduce the burden on staff by handling small tasks, such as disinfecting chairs, getting wheelchairs or tending to patients’ simple requests.
Because volunteers fulfill patients’ desire for socialization, nurses and other staff — who often had been engaged in conversation by patients seeking companionship — have more time to tend to patients’ treatment needs or other practice matters.
Several patients who underwent chemotherapy at the practice were so touched by the kindness displayed by the Chemo Buddies, they went on to volunteer with the organization.
“Many people say to me that they never dreamed they would actually enjoy coming to a cancer center or actually look forward to appointments,” Stephens said. “This is in no small measure because of their interactions with the volunteers.”
Chemo Buddies is based at Oncology Hematology Associates of Southwest Indiana, but it has expanded to three other facilities in the region.
If other hospitals consider implementing a similar program, Kincaid emphasized the importance of social training for volunteers, as well as a desire on the facility’s part to foster a sense of hope among patients.
“There is always hope, and I say this from my experience in the last 7 years,” Kincaid said. “I have seen patients come in with a grim prognosis who are just like my sister, taking chemotherapy to try to stay alive long enough for another treatment to come along. Then, all of a sudden, their symptoms subside and they are in remission, and there is no way to explain it medically.”
Stephens also offered advice to institutions or health care teams that may consider a program like Chemo Buddies.
“I cannot endorse this program more strongly,” Stephens said. “We all do things the way we do because we think it’s the best way, but be open to change and integration. Be open to the hearts of people who are willing to help.” – by Joe Gramigna
On the Web:
To learn more about Chemo Buddies, go to www.chemobuddies.org.
For more information:
Jill Kincaid can be reached at email@example.com.
Anthony W. Stephens, MD, can be reached at firstname.lastname@example.org.
Disclosures: Kincaid and Stephens report no relevant financial disclosures.