Palliative care may be the most misunderstood phrase in treating serious illness. Read about this…
Dorothy Mullen had been “operating outside” of the traditional healthcare system for decades. The vibrant 64-year-old Princeton resident relied on alternative medicine and organic agriculture to manage the effects of heavy metal exposure that could not be treated by conventional medicine.
She even made a career out of her passion for the environment – working for years in garden-based education in the Princeton Public School District, and then running the Suppers Programs, a nonprofit organization providing education about food preparation and clean eating habits.
But in April 2019, a stage IV lung cancer diagnosis brought her life to screeching halt and suddenly back to “traditional” healthcare.
“Knowing that 50 percent of those diagnosed with stage IV lung cancer die within eight months was a sobering reality,” Dorothy explains. “I quickly knew that my treatment options were going to be more conservative, but I wanted to understand the whole spectrum of services available to me.”
Dorothy’s oncologist called her insurance provider, Horizon Blue Cross Blue Shield, to ask if they offered programs to support members with a terminal cancer diagnosis. Helen DeLuca, a nurse case manager with Horizon’s Supportive Care Program, stepped in.
“Horizon’s Supportive Care Program is designed to help our members face end-of-life decisions with dignity, with control of their destiny as far as what they want done, as much as they want done, and as little as they want done,” explains DeLuca. “Our program is a collaborative effort between the patient, their family and their doctors. Horizon’s role is as a resource and trusted advisor who can help connect the dots and empower our members.”
DeLuca connected Dorothy with Stephen Goldfine, MD, a palliative care physician and Chief Medical Officer for Samaritan Healthcare & Hospice. Samaritan has been partnering with Horizon for their Supportive Care Program for more than a year.
“Horizon and Samaritan, both being very innovative corporations, were looking at ways to provide services to patients that really focus on system management as well as goals of care,” says Dr. Goldfine. “It’s very unusual in medicine for the patient to be asked, ‘What is important to you? What are your goals of care?’ This is a program that focuses on the patient, and how we can provide an additional layer of support when they are undergoing treatment.”
Dr. Goldfine sat down with Dorothy to discuss what options were available.
“The hardest part of palliative care is making sure the patient understands what palliative care actually is – it’s not hospice care,” he says.
Palliative care provides lung cancer patients and all patients suffering from life-limiting illness a level of relief from their pain, symptoms, and stress. The Supportive Care Program also emphasizes empowering the patient to make healthcare decisions and set goals of care for themselves.
“Oftentimes, patients get involved in the medical system without anybody asking what is important to them,” Dr. Goldfine adds. “They end up receiving care that is not wanted and that can actually cause more harm. If we look at New Jersey, about 25 percent of chemotherapy patients receive it in the last two weeks of their lives. So that chemotherapy has not made a difference to their quality of life and may have even shortened their life.”
After talking with the Supportive Care Program team, Dorothy understood her prognosis and took a practical approach when it came to her diagnosis and next steps.
“It’s about being real,” she says. “I’m expressing my wishes while I am still able to do so. I think this approach helps the people in my life – my children in particular. Before they understood what stage IV lung cancer means, they were using the same vocabulary as other people – ‘beat it, fight it.’ It takes time to bring loved ones around to the idea of what this diagnosis means.”
Dorothy was pleasantly surprised at the options and services the Supportive Care Program provided her.
At Dorothy’s request, Dr. Goldfine provided care options to help ease her pain and help sustain her quality of life as long as possible, like installing a catheter to drain fluid from her chest so she could breathe easier day-to-day.
The Supportive Care Program also ensures Dr. Goldfine and Helen DeLuca meet for a patient conference every two weeks, with phone calls in between, to discuss and manage any of Dorothy’s onging care and medical needs.
“It wasn’t either/or – palliative care can be provided alongside curative treatment,” she says. “The whole thing was going to be goal-oriented, with a focus on my own comfort and self-determination.”
Dorothy says she has been grateful to encounter people like Dr. Goldfine and Helen DeLuca as she continues to deal with her diagnosis and navigate the process.
“They are authentic. You can tell that they operate with great compassion and that their careers are also the pathway for expressing their love. I’ve had the opportunity to see people in my 64 years in all different kinds of roles in life, and I can tell you I see no greater job satisfaction than people who are helping others with these matters of end-of-life decision-making,” she explains.
To learn more about Palliative and Hospice Care click here or call Samaritan at (855) 337-1916.