The Integral Role of Volunteers in Caring for Cancer Patients
On the Road with Dana-Farber Cancer Institute
Stacy Palmer, CPXP
This summer our On the Road program took me to Dana-Farber Cancer Institute in Boston, Massachusetts, an organization internationally renowned for its equal commitment to patient care and research. I was intrigued to learn that Dana-Farber was deeply involved in nearly half of the 75 cancer drugs approved by the FDA in 2017 for use in cancer patients. The organization is quick to acknowledge that leading-edge research is informed by patient care – and patient care relies on leading-edge research. The unique focus on both innovation and personal relationships creates an environment resonating trust and compassion, and I was especially inspired to see the team attributes much of its patient experience success to the involvement of volunteers.
The visit began with an overview from my gracious hosts, Renee Siegel, Program Manager, PFAC and Kathleen Horvath, Program Manager, Patient and Family Relations. Reinforcing the tremendous value placed on volunteers, they invited a former Co-Chair of Dana-Farber’s Adult Patient and Family Advisory Council (APFAC), Tony Serge, to join our discussion. Serge, Founder of a Boston-based executive advisory firm, was introduced to Dana-Farber when his wife was undergoing treatment for breast cancer.
“Because of all that Dana-Farber did for my wife and me, I had to find a way to give back,” said Serge. “I sought out ways that I might help, and through a series of discussions, I was introduced to APFAC. That is when I discovered why we always had compassionate care. Dana-Farber had created a Patient and Family Advisory Council whose mission is to represent the patient’s voice. What a remarkable commitment.”
Serge reinforced something I heard throughout my visit, the great sense of gratitude felt by patients and families that motivates them to give back in order to help others.
Horvath added, “There is a phenomenal focus on patient and family experience throughout the organization. Not just from our clinical team, but from parking services to anyone you meet or interact with. It’s part of our culture. Once people experience that, they cannot give back enough.”
Enlisting the Help of Volunteers
Over 500 volunteers donate their time to Dana-Farber each year, primarily in patient and/or family facing roles. Required to serve 4-15 hours per week, with a minimum of one four-hour shift, volunteers currently range in age from 18-94. In addition, Dana-Farber offers a junior volunteer program for students from local high schools.
“Volunteers are an integral part of what we do here. They are front and center and able to integrate with patients,” said Pat Stahl, Senior Manager, Volunteer Services and Programs, explaining that all volunteers are trained to understand the core values and caring for the whole person philosophy.
Stahl and her team have tight guidelines to ensure volunteers have the appropriate skill sets and personalities to thrive in the cancer care environment. In addition to looking for people who are kind, compassionate, reliable, flexible and can work collaboratively, they screen for an understanding of appropriate boundaries, good communication skills and a non-judgmental demeanor. They’ve also learned the best experiences occur if volunteers are not currently undergoing treatment and have not experienced the loss of a family member in the past year. With that, the volunteer base at Dana-Farber is diverse, including cancer survivors from multiple diseases, caregivers, students, retirees and working individuals. “We look for people who want to be here for the right reasons, people who feel like they want to connect.”
Dana-Farber hosts an annual dinner each year to honor and thank its volunteers, but Stahl acknowledged the true benefit is in the fulfillment of helping others and making a difference. As volunteer Hilary Glovsky said, “No success in business I have had, no prize I have won, no pat on the back I have gotten can hold a candle to the absolute joy I feel when patients thank me for making their lives better.”
I heard many volunteer stories and testimonies during my visit that reinforced the gracious spirit and benevolent intentions of volunteers. One was shared by Michael Bueller, Senior Director, Content and Creative Services. Bueller oversees Dana-Farber’s external blog project, which includes stories of patients and family members in a way meant to provide hope and reassurance to others. He shared one blog about volunteer Sandy Cunningham whose wife of 56 years died of cancer:
At 91 Years Old, Sandy Cunningham Keeps on Volunteering for Cancer Patients
Ingersoll “Sandy” Cunningham has the dignified, silver-haired appearance of a man you’d expect to find sipping iced tea at the country club. So what is this Harvard-educated great-grandfather doing pushing food carts through the hallways of Dana-Farber, handing out sandwiches to patients?
“You’ve got to have some objective when you get up in the morning, a purpose and a place to be,” says Cunningham, 91, a retired investment advisor, and for the last 16 years, a weekly volunteer at Dana-Farber. “This is mine. I used to take care of people and their money; now I take care of people facing cancer.”
Possessing a warm smile and gentle, mischievous manner, Cunningham knows just how to put patients at ease. He loves making them laugh, whether by singing “going to get the Mayonnaise” while searching his cart for condiments or by donning a tuxedo, top hat, and red clown nose during his shift, as he did for years on Valentine’s Day.
Most importantly, he understands just what patients and families are going through – because he’s been there himself. > Read Full Blog
Stahl acknowledged synergies with other cancer care centers have been instrumental in building the successful volunteer program at Dana-Farber. One key resource is the Volunteer Management (VM) in Cancer Center, of which Stahl is co-founder and part of the Coalition Leadership. VM Cancer Center is comprised of leaders from top cancer care centers across the country with expertise in managing thousands of volunteers in the cancer care environment. Its purpose is to share best practices among the institutions, hospitals and nonprofit organizations managing volunteers in an effort to, among other things, develop evidence-based data to support effectiveness of trained volunteer support to improve quality of life for patients and families.
Incorporating Patient and Family Voice
Dana-Farber has two active patient and family advisory councils, an adult council currently with 18 members and a pediatric council with 14 members. With oversight through Volunteer Services, both councils collaborate and incorporate participation from all senior leadership. In addition to standing PFAC meetings and projects, members are involved on all committees throughout the organization, contributing to everything from safety, quality/risk management, patient/family relations and communications to building design, patient education, resource centers and more.
In fact, every new patient at Dana-Farber receives a comprehensive ‘Handbook about Your Care’ that covers topics such as finding your way, your healthcare team, what to expect at your visits and during treatments, patient support programs, phone numbers and more. The thirty-page handbook is an extensive resource and introduction for patients and their family members, but what especially caught my attention was that the introduction letter at the beginning of the book is not from the CEO, COO, CMO or another executive leader within Dana-Farber. It’s signed by the Adult Patient and Family Advisory Council. The closing reads, “We work diligently to help ease the burden of cancer treatment for patients and their families, and we hope that this handbook is useful to you. We wish you well and are here to help.”
The handbook is a great example of why Dana-Farber’s Patient and Family Advisory Council program has served as a national model for healthcare institutions. Both councils help improve the patient experience and ensure patient- and family-centered care by committing to:
- Advocate for expanded patient and family support services, including the ability to book an appointment for the next day
- Partner with hospital administration for increased staffing and improved scheduling, when needed
- Implement better communication and service recovery
- Improve infrastructure and physical spaces
I heard many great things about the past and current contributions of PFACs throughout my visit, including their involvement on a binder project currently being piloted with pancreatic cancer patients. “Rather than being reactive, we want to be proactive and catch them before they fall,” shared Gastrointestinal Program Nurse Patti Rizzo, RN, explaining how the binder, funded by a grant, includes things patients and families need to know before and during treatment. Nurses walk patients through the binder during their first visit and then follow-up a few days later via phone to answer any questions. Initial reaction from patients and staff show the binder project to be very successful, reducing the need for patients to call with basic questions and resulting in staff feeling better able to prepare patients and families for what to expect as they begin treatment.
The focus on listening to the voice of patients was especially clear on a tour of the Dana-Farber campus. PFAC representatives consulted on many elements of the design of the current building before it opened in 2011. Siegel shared that Dr. Ed Benz, Dana-Farber’s CEO at the time, asked the PFAC to interview the building architect before moving forward with the project. Their influence can be seen in areas such as the centralized lab services with comfortable seating, a grand piano in the lobby, a healing garden and the colors of the walls, rugs and chapel.
Team members in each area I visited proudly shared ways in which volunteers contributed to development and/or supported its ongoing mission to serve patients and families. A few highlights from my tour:
Influenced by the PFAC, the two-story healing garden features seasonal flowers, shrubs, and plants and provides a calm, peaceful environment for both patients and staff. For those with allergies or other health issues, the nearby Morse Conservatory offers a plant-free environment for relaxation.
The creation of Friends' Place came from a conviction that in addition to expert medical care, people with cancer benefit from psychological and educational services to help manage the ways it affects quality of life. Friends’ Place offers items and services to help patients adjust to changes in appearance during or after cancer treatment. The store sells a diverse range of specialty products, including head coverings (wigs, hats, scarves, sleep caps), sexual health books and aids, compression sleeves and Medic Alert bracelets, non-metallic deodorants and more.
Resource Centers for Patients and Families
Committed to supporting the education of patients and families throughout their cancer care experience, Dana-Farber offers two resource centers with volunteers at desks to help answer questions. Concierge volunteers at the Shapiro Center for Patients and Families help navigate the Dana-Farber experience and its available resources as well as identify local amenities. The Blum Resource Center provides patients and family members with a comfortable environment to learn more about disease treatment and management. The center offers many educational programs, a creative arts studio and business services. One highlight of my tour was the original digital art on display submitted by patients, staff and volunteers.
The Zakim Center for Integrative Therapies and Healthy Living feels very much like a traditional spa, but was designed based on the belief that cancer patients can enhance their quality of life through practices such as acupuncture, yoga, massage, exercise and nutrition. The center offers educational sessions for patients and families along with treatment rooms and group classes.
Visual Displays and Art Collection
Multiple visual displays and other artwork adorn the space at Dana-Farber’s Yawkey Center for Cancer Care, starting with the incredible golden leaves sculpture hanging in the hospital lobby, but two exhibits especially stood out to me as they connected to the research of the organization as well as offered patients and families an opportunity to recognize loved ones.
Human Genome Display
The Gene Display is a representation of a microarray, the innovative technology that Dana-Farber researchers utilize to survey the behavior of many genes in a tumor cell at once. Acting like a tiny laboratory on a silicon rectangle the size of a postage stamp, the microarray measures the "expression" of the tumor's genes. A scanner then reads and converts the data into a vivid, colored display showing the varying levels of genetic activity. Red indicates a high level of activity and blue, a low level of activity. The display replicates the technology and offers patients and families the opportunity to sponsor a gene with a message to a loved one.
The Zebrafish Display
For decades, Dana-Farber investigators have turned to zebrafish as a powerful research model. The genes of this tiny tropical fish are remarkably like those of humans, allowing them to play a key role in the discovery of lifesaving therapies. Dana-Farber’s Zebrafish Display features 477 personal inscriptions and on-screen messages honoring patients, caregivers, and loved ones. These notes of hope and appreciation are from donors whose gifts are helping to advance innovative research at Dana-Farber.
A Unique Experience in Pediatric Cancer Care
I was able to visit with team members from the Jimmy Fund Clinic, Dana-Farber’s center for research and treatment of pediatric cancer. Given Dana-Farber's Jimmy Fund Clinic is an outpatient clinic, the pediatric oncology team works very closely with Boston Children’s Hospital to accommodate patients requiring inpatient stays (Brigham and Women's Hospital accomodates adult patients requiring inpatient stays). This partnership creates many unique challenges and opportunities. While treatment technically happens at multiple locations, the goal is that patients/families are unaware of the difference. Staff are cross-trained at both locations. Upper administration is employed by both organizations, and the team is continually working to streamline operations.
One example shared is in the patient/family wrist band procedure. A change was recently made to allow one wrist band to be scanned by multiple sites and integrate with multiple networks and electronic medical records. “Patients should not have to know what systems we are using,” expressed Amy Billett, MD, Director of Safety and Quality. “We must set up standard and standing mechanisms to communicate.”
These standard mechanisms include daily 11 a.m. safety huddles including representatives from both organizations along with 4 p.m. end of day huddles to review cases and discuss care plans. The organizations also work closely to facilitate areas such as transport and billing with a goal of eliminating confusion and anxiety for patients and families.
The team acknowledged the unique scale of pediatric oncology given there are approximately 15,000 new pediatric cancer diagnoses in the United States annually, compared to 100,000 adult breast cancer diagnoses alone. Similarly, the Jimmy Fund Clinic’s 771 new patients per year is small when you consider the lab on Yawkey Center can see that many patients per day. The smaller population gives the clinic an opportunity to offer customized programs and events to support pediatric patients and families. Staff work hard to ensure the kids are interacting and having as much fun as possible, even as they go through cancer treatment, as well as that the parents and siblings are supported.
Many programs are offered to facilitate this support and connection, and true to Dana-Farber’s commitment to incorporate patient and family voice, most were developed though feedback from patients and families. “We know what we think is best, but unless you ask, you really don’t know,” said Jen Noonan, Adolescent Program Manager.
In-clinic activities include cooking classes, art lessons, themed days and ongoing support groups. The Jimmy Fund’s Department of Patient and Family Programs offers music, arts and games intended to provide a sense of normalcy and distraction to help ease the medical experience for pediatric patients. Additionally, a teen space in the waiting room and infusion room provides age appropriate programming and activities for teens, who can sometimes feel isolated as they tend to primarily see younger patients in the main hallways of the clinic. The Patient and Family Programs Staff even hosts regular offsite events for teenagers such as overnight trips, day trips and sports outings. In addition to supporting patients’ needs, these outings are great bonding experiences for the Dana-Farber and Boston Children’s Hospital team members who attend as chaperones.
“This is a hard job with much stress and sadness. Helping the kids to enjoy life and experience new things together makes you feel part of something bigger than yourself,” said Lisa Scherber, Director of Patient and Family Programs.
The PPFAC in Action
In closing my visit, I was honored to be invited to join a Pediatric PFAC meeting and witness first-hand the energy and dedication of the group. Each meeting starts with a personal story to help connect members and provide a foundational reminder of the purpose of the council. In this meeting, a member shared the emotional story of her beloved son who lost his cancer battle at Dana-Farber. She reaffirmed how important serving is to her in order to honor his memory and help others facing similar situations. Several hugs were shared before the group proceeded through the agenda.
A team member reported on a project to help reduce pharmacy wait times, another shared how the PFAC contributed to the annual Patient Experience Week and another shared details of the upcoming Bereavement Cruise. In its fourth year, the cruise is an opportunity for families who connected through their experiences and losses at Dana-Farber to come together for a celebration of the life of their loved ones among people who understand their grief and emotions. The program is an incredible testament to the relationships and support systems built during cancer care and loss.
The meeting also included a presentation from Kira Bona, MD, MPH, Instructor of Pediatrics at Harvard Medical School. Bona shared research around the question 'How can we better help families cope with all the financial challenges common in the pediatric journey?' Reminding the group that one in five children live in poverty in the U.S. and the reality that poverty is correlated with negative health outcomes in pediatric care and subspecialties, she led a discussion on how pediatric cancer outcomes vary by socioeconomic status. She also shared data on the financial toll cancer treatment takes on families at all socioeconomic statuses, including the fact that 25% of families report losing more than 40% of their annual household income due to work disruptions within 6 months of a childhood cancer diagnosis. She reinforced the need help normalize the conversation and the opportunity for parents to become peer educators to help others understand options and how to navigate the financial aspects of care. Her message resonated with the council and sparked passionate discussion on ways they could help in this regard.
The meeting exuded everything I saw during my visit and reinforced the sincere belief at Dana-Farber that patients and families must be active participants in the design and implementation of care. I applaud the organization for their successful and focused intent to incorporate these voices throughout the cancer care experience.
For more information on the patient experience efforts at Dana-Farber Cancer Institute, contact:
Renee Siegel, MSW, LCSW
Program Manager, Patient and Family Advisory Councils
Division of Patient and Family Programs and Services
Dana-Farber Cancer Institute