True Palliative Care: A Patient's Perspective

UMass Palliative Care Team Rebecca Kowaloff, DO

Daniel Manzaro didn't know anything about palliative care when his wife of 47 years was diagnosed with cancer. It’s a good thing her oncology nurse did. Valerie’s cholangiocarcinoma had progressed with painful bone metastases and after hospitalizations and rehab, her nurse recognized she needed more support and coordination of her increasingly complex care. As caregiver, her husband Daniel needed it just as much. Pamela Lane, NP, and the rest of the outpatient palliative care team at UMass guided the couple through a serious illness that placed different burdens on each spouse. When her doctors recommended a new port for a stronger chemotherapy drug, Valerie refused and transitioned to home hospice care. The team helped Daniel to recognize when he needed more help at home, for which he remains grateful. Valerie died at home with Daniel by her side: “It was brutal, but I had help”.

Daniel barely had time to process her death before he had another serious illness to contend with — his own. Doctors diagnosed him with pancreatic cancer, and he immediately found himself back in the palliative care clinic with Pamela and now Sara Lyon, RN, MS. He was hesitant to pursue chemotherapy after Valerie’s experience, but his team encouraged him to do so. His palliative care team worked alongside his oncology nurses, medical providers, and GI nurse navigator Miranda to check his vitals, monitor swelling in his legs, and make sure his port and chemotherapy pump were functioning properly. When he was hospitalized with a blood clot, his palliative team visited him in the hospital for seamless integration of care, a visit as much for the heart as for the body, as Daniel doesn’t have children.

“Any time I have a problem, I call them, and they solve it… They have more time than a regular doctor’s office, they get right on it. When you’re sick, you don’t want to be doing all that stuff.” Daniel says compared to other doctors, the palliative care team is “a little more attentive, like you’re the only patient they have. They spend time on the phone with you.” They have straightened out medication issues with the pharmacy, titrated his pain medication to achieve a comfortable pain level, and given medications for symptoms and side effects, such as insomnia. “When it comes to meds, they know just what to do for you. That’s where the help really comes in,” he says. Even though he has received constant support, he’s only had to see them in person twice over the past six months, as the rest of his issues are dealt with via telephone, something he especially appreciated when his pain medication was being titrated.

Many seriously ill patients and their families don’t know about Palliative care or hold misconceptions that lead them to avoid it if referred. If offered what is in some hospitals now called “supportive care”, a team to help them navigate the many doctors and medications, to process complex information and their fears, and to help them access resources to ease the burden of care on their families, many more would accept such a referral. To make that change for patients, we first have to change our understanding as medical providers.

Because cancer care is such a multidisciplinary endeavor, perhaps the palliative care team’s most important role for Daniel — whose only local support is his brother — has been as “a liaison between [my people].” They have “taken the pressure off ” to allow Daniel to focus his strength on treating, and now beating, his cancer — as his doctors have now deemed him cancer free. Especially amidst the loneliness left by Valerie’s death, Daniel says ringing the bell as he left UMass’ eighth floor cancer free was “the most uplifting thing.” Daniel is focusing on recovery, both physically and emotionally. He has increased his daily walk from one mile to two, and plans to work toward three this spring, as he also adjusts to a house, and a life, without his wife. Valerie taught him as much as she could about household management, an opportunity made possible by the guidance from palliative care and hospice about prognosis and progression. He continues to turn to the palliative care team as an ear to listen, especially when he gets new aches and pains and worries what might be causing them. He wishes more nurses referred patients to palliative care as “something in between nursing and hospice.” And he wants everyone to know that accepting palliative care doesn’t mean your time is coming to an end. Daniel is living proof of that.