Palliative care’s impact on patients can’t be scientifically measured like blood pressure or cholesterol levels. Rather, its effects are best related through the stories of patients who have been empowered to make their own healthcare decisions, and of the loved ones who have been relieved of some of the burdens they have carried.
While palliative care provides relief from the symptoms and stress associated with serious and complicated illnesses, it’s really so much more. “Palliative care doesn’t just look at the disease process—it looks at the whole person,” says Margaret “Peggy” Firer Bishop, ANP-BC, ACHPN, a nurse practitioner at Sentara Martha Jefferson Hospital. “It’s a team approach that takes a holistic view. We want to understand the human being who is in the midst of this medical experience.”
“Often the prospect of a serious illness is overwhelming,” adds Paul J. Tesoriere, MD, director of inpatient services. “Our Palliative Care team is trained to understand all aspects of the patient’s condition: emotional needs, physical symptoms, and the patient’s goals and expectations. Focusing on these items takes a tremendous amount of time and compassion, so it’s these kinds of interactions that often get lost in the modern healthcare system.”
During a typical day, the Palliative Care team might see patients in the hospital who need help with symptom management, emotional support and treatment decisions. “We discover who patients are as individuals, what matters to them, how their loved ones are holding up and how we can best be helpful,” says Bishop.
Recently, a patient with severe pain from advanced cancer visited the outpatient palliative care clinic, where Bishop and the rest of the team see patients twice a week. After talking about the patient’s desire to participate more in her grandchildren’s lives, they switched her pain medicines. “When I saw her a week later, her pain was significantly improved, and she was able to enjoy her life more and sleep more comfortably,” Bishop notes.
Bishop also works with family members who are caring for loved ones. “The patient’s ability to think, reason, live independently and interact with the world may diminish, and families are frequently in a position to have to decide how to manage medical interventions,” she explains. Sorting through those choices can be overwhelming, so the team helps families interpret medical information, consider future choices, understand how an illness might progress, and learn about options to maximize comfort and quality of life.
The time and effort involved in palliative care is well worth it because of the profound effect it has on patients’ lives. For two women, this kind of personalized, in-depth attention changed their outlook and helped them take control of their health care.
Elinor: Making Her Own Choices
Holly Dilatush’s mother, Elinor, was a strong woman.
“My mother was very proud of the fact that she could work as hard or harder than most men. She could dig out a 120-pound tree and put it in your car trunk with no problem at all,” Holly says of her mother, who ran a nursery in New Jersey with Holly’s father, Tom. “She had a hard life. She was an awesome cook, an oil painter, a mother of four and so much more.”
Recovery from hip surgery in 2013, however, was harder than expected for Elinor, whose blood pressure dropped during the procedure. She spent several days in intensive care, and her blood pressure never returned to where it was before the surgery, explains Holly.
Shortly after, in 2014, Elinor’s left knee started giving her trouble, but she chose not to have surgery—partially because of her previous blood pressure issue. “Without surgery, her quality of life went downhill,” Holly recalls. “She couldn’t do much.”
Elinor used a cane and a walker to get around—a big change for a woman who spent so many years outside. “Her last years were not happy years because she had been so physically active her entire life. She was strong and resourceful, but she had two years of not being strong.”
Still, Elinor’s overall health was good. Then, one day in early February 2016, she took a walk to the mailbox, and it took her an hour to get back to the house. Eventually, Elinor was diagnosed with amyloidosis, a disease that causes a buildup of proteins in the heart and other organs. Surgery wasn’t an option. Holly says her mother refused additional tests, and that was when Sentara Martha Jefferson caregivers referred her to Bishop.
“After Mom saw Peggy, she changed. She went from totally miserable to thrilled with the possibility of going home, dying at home and not having any more tests. Her mood and life changed. She and Peggy hit it off immediately,” Holly says. “Peggy would come in and pull her chair close to Mom. She was totally focused on her, and she totally eased Mom’s emotions. She reassured her that her choices were OK, and that not wanting further treatment wasn’t being ‘weak.’ Mom needed to be at peace with her choice, and the Palliative Care team made that possible.”
Elinor wanted to live out the remainder of her life in Utah with one of her sons, and Bishop and the team helped make that a reality, Holly says. While the logistics of the trip were being worked out, Elinor received home visits. “The Sentara Martha Jefferson staff talked flowers and jewelry and humor with Mom. They just totally transformed her, even with something as simple as putting lotion on her. The visits always brightened her day. I was sure they needed to be other places, but they didn’t show that at all. They listened patiently.”
The team celebrated the visit of Elinor’s great-granddaughter Olivia. They joked with Elinor over her love of actor Tom Selleck and admired her oil paintings. In turn, she shared her life stories with them. “I think it’s common as we’re facing the end—all the stories are pushing to get shared,” Holly remarks.
Elinor ultimately did spend her final days in Utah, where she enjoyed beautiful views at her assisted-living facility before a fall necessitated a trip to a hospital. She passed away a few days later, at 83.
Holly says the Sentara Martha Jefferson Palliative Care team gave her mother a sense of purpose. “You’re a valued person. You’re special, and your choices are your choices. Sentara Martha Jefferson does a lot of that, but this was different,” Holly says. “Mom got to go to the end of life as an independent, empowered person. They gave her back the control she thought she had lost.”
Ginny: From Hopeless to Hopeful
Virginia “Ginny” Clifton, of Crozet, admits that she felt hopeless after her diagnosis of stage 4 lung cancer in February 2016.
“My first thought was that I was going to have to go to hospice because my cancer wasn’t curable,” recalls Clifton. “I didn’t have a very good attitude, but fortunately Peggy Bishop was the one who had a smile and helped us through it. Probably the best thing palliative care does is help you travel through this cancer journey.”
Ginny met Bishop following surgery to drain fluid from her lungs. Ginny’s doctors, as well as Bishop, encouraged Ginny to try treatment, which would consist of four rounds of platinum-based chemotherapy.
Bishop also helped Ginny deal with the side effects of her cancer and treatment. Ginny had partially lost her voice, so Bishop suggested she see an ear, nose and throat doctor, who revealed that her left vocal cord had been paralyzed by the tumors. “I’m learning to live with it,” Ginny says.
She also had trouble walking because of numb feet, a side effect of the chemotherapy. “Peggy thought physical therapy might be helpful, and it really has been,” Ginny remarks. She started using a cane to get around, and the physical therapists helped her find a walker that was sized for her body and had a basket to carry her oxygen tank.
“The biggest thing is that Peggy has made me think we can live with some of this and start a different kind of life,” says Ginny, who was a compliance officer at a bank before she retired. “Nurses and doctors are focused on what they do, and you want that. But you also want somebody to help you navigate everything else. Peggy helped us find the treatments that could help us and deal with the things we had to accept and live with. You learn to live a day at a time.”
With her cancer now in remission, Ginny likely will need a chemotherapy shot every three weeks for the rest of her life. “We’re treating it like a chronic disease,” Ginny says. Her husband, Ralph, says the Palliative Care program, which the couple discovered in a Sentara Martha Jefferson Hospital brochure, helps both of them.
“It helped me by letting Ginny express her feelings to Peggy and me and put them in context,” Ralph says. “Being husband and wife, we sometimes assume we know what the other is thinking. Peggy is an outstanding listener, and she can explain a complex medical situation to us in simpler terms.”
“I honestly do not believe we would be at this stage of acceptance and adjustment if it hadn’t been for Peggy’s help,” Ginny adds. “Palliative care really got us going in the right direction.”