Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~Leo Buscaglia
The term “palliative care” has gained a lot of traction in the medical community in recent years. Once considered synonymous with comfort care for the dying, it has evolved into a growing medical specialty that focuses on the needs of patients who are living with life-limiting illnesses of any kind. As of 2015, there are nearly 7,000 board-certified palliative care physicians in the United States.
Still, for many patients who are living with terminal illness, palliative care can be a frightening and confusing term. When a doctor says the words “palliative care,” many people hear, “We have nothing left to offer you.” The attitudes of healthcare providers who have little knowledge of how palliative care can benefit patients who are not yet at the end of life often adds to this misconception and patients’ fears.
So what exactly is palliative care, and when is it appropriate? According to PalliativeDoctors.org, palliative care is care that “relieves suffering and improves quality of life for people of any age and at any stage in a serious illness, whether that illness is curable, chronic or life-threatening.” What this means is that people who have been diagnosed with a terminal illness can (and should) receive palliative care from the moment they “get the news.” It is appropriate for anyone with a life-limiting illness and is absolutely compatible with treatments that aim to extend life.
Palliative care is less of a medical discipline than it is a philosophy. Palliative care teams treat the whole person and their family with the single goal of improving quality of life. They address every aspect of personhood, from physical symptoms, to emotional well being, to family relationships and spiritual concerns. Certainly, palliative care includes interventions aimed at alleviating suffering at the end of life. But it is not just end-of-life care. As Dr. Michael Fradkin said in a recent interview with SevenPonds, its goal “is to improve quality of life, to empower the person to be in charge of their own destiny, to provide support to them and to help them live.”
Marcia is a single mother of two young children who is currently undergoing treatment for advanced lung cancer. She has a poor long-term prognosis, but is highly motivated to stay alive as long as she can. Her treatment regimen is aggressive and exhausting, and she relies heavily on family and friends for help. Her sister, Susan, has taken a leave of absence from her job to stay with her and provide as much support as she can.
“When my doctor said the words “palliative care,” I totally freaked out,” she says. “I’ve had cancer long enough to know that “palliation” is not a good word. So I immediately thought, ‘He’s sending me home to die!’
“I was pretty hysterical, and begged him not to give up on me. ‘I need to be here for my kids,’ I sobbed.
“My doctor was shocked and then super apologetic,” she says. “He explained that no one was giving up on me, and that he had no intention of just letting me die. ‘We just want to help you and your family cope with everything that’s happening,’ he said.
“And that’s exactly what they’ve done. I see a physical therapist, a psychotherapist and a nutritionist. I do yoga, and I’ve learned to meditate. My social worker has helped me figure out how to get more financial aid. And my children are seeing a psychiatrist who specializes in helping kids whose parents have cancer,” she explains.
“Susan has even gone home for a while to be with her family, which we both thought would never happen until I was gone. It’s been a real godsend for everyone. Especially the kids.”
Sadly, not every patient with a serious illness has access to a palliative care team. Nor is every doctor aware of how palliative care can help patients who are not yet at the end of life. But that doesn’t mean that patients and their families should not seek out resources that can provide holistic, whole-person, whole-family care.
So be your own advocate. Talk to your doctor about what’s important to you, and do it as early in your disease process as you can. Even if your healthcare provider does not have a palliative care team, they can refer you to a treatment center that does. They can also help you find resources that will help you lead a more comfortable, more meaningful, more satisfying life.
To learn more about palliative care or find a provider in your area, check out GetPalliativeCare.org.
About the author
Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and their effects on family relationships and human dynamics.