Palliative care offers support beyond medicine
At the Spenard home that Edgar Preiss built for his family decades ago, his grown children still wear the loss of their father in their eyes. Edgar’s wife, Marion, catches herself speaking of him in the present tense, as if he is still in the room. And indeed it feels as if he is.
From his well-worn leather chair by the woodstove or the rugged wooden ceiling beams he handcrafted to the fruit trees he planted outside, signs of Preiss’s industrious life remain. After being diagnosed with Stage IV cancer in October 2016, Edgar Preiss passed away in August 2017, at home, with his family by his side – and with a small army of palliative care specialists who helped the family prepare for this moment.
“We wanted quality time over going through all these tests and taking away the time he had with family,” Marion Preiss said. “He loves – loved – life. He was 83, but he was young at heart.”
In 2017, Providence Health & Services Alaska provided funding to expand Providence’s palliative care fellowship program, which trains medical providers in specialized treatment of patients with serious illnesses. The program is unique in that it brings together doctors, nurses, social workers, spiritual care providers and other specialists who collectively care for their patients. It is one of only a handful across the country to cover so many specialties in one program.
Ursula McVeigh, M.D., director of Palliative Care at Providence Medical Group Alaska, says palliative care provides patients with relief from the symptoms, pain and stress of serious illnesses. Palliative care is often a precursor to hospice, she explained. While palliative caregivers continue to pursue helpful medical treatments, they also help transition patients to hospice at an earlier and more effective time, when needed. It better helps families and their loved ones face end-of-life realities, she said.
“We support people wherever they are in the process, whether it’s psychological, social, spiritual or concrete medical care,” McVeigh said. “It is a specialized field of medicine that requires a dedicated way of learning and letting the patient drive the care.”
Marianne Johnstone-Petty, APRN, ACHPN, and Interprofessional Education Director of Palliative Care at Providence, says palliative caregivers all seamlessly work in conjunction depending on a patient’s needs at a particular time. She likens it to a bicycle wheel, wherein the patient is at the center and the care team represents the spokes surrounding them.
“It’s a program that empowers the patient,” she said. One day, the spiritual “spoke” may be needed by way of counseling; another it may be the nursing “spoke” adjusting medications. It constantly shifts depending on the person, the situation or the illness.
That’s what Edgar’s son, Mark Preiss, appreciated most about palliative care – that his father was neither ignored nor treated like a sickness to be cured no matter the cost.
“They really let Dad drive his treatment,” he said. “It was all about him.”
Karyn Overturf, ANP, is the first nurse practitioner to complete the palliative care fellowship at Providence, and she spent many hours with the Preiss family.
“I had never worked in a situation where we had an integration of spiritual care, health care and social care,” she said. “All of us listen in different ways, and it helps us see better what the patient really needs.”
Abraham Labrada Santiago, a chaplain who completed the fellowship, said the teamwork among physicians, nurses and chaplains helps him feel better equipped to serve his patients.
“Sometimes we don’t have access to medical information and we walk into a room with little to go on,” he said. “In my field, it’s very important to provide palliative care because it’s
supporting emotional and spiritual care.”
That’s often all a patient needs, Marion said. As Edgar’s cancer progressed, the family wanted to focus on the quality time they had left. They squeezed in a trip to Germany so he could see
relatives he left behind in 1952; they went to favorite sightseeing spots in Alaska; from his bed, he was able to watch one of his grandsons graduate high school via a Skype session. He even fulfilled his lifelong dream of having chickens, which Marion patiently endured in the family’s basement. All the while, the palliative team was there, holding Marion’s hand if she was feeling weak, listening to Edgar’s stories as he reflected on his life and answering the family’s medical questions, no matter the time of day.
“For us, they were like angels,” Marion said, pausing. Daughters Kristine Preiss and Frances Jones comforted their mother as she teared up. Said Frances, “They told the truth in a very
compassionate way. We are so thankful for that.”