Alicia Palelis of Pembroke Pines has been married for 10 years, during which time she and her husband, Jimmy, have had two children — Bryan, 9, and Addison, 5. Last year, at age 34, Palelis was diagnosed with breast cancer that had spread to her lymph nodes.
Her oncologist and surgeon determined she needed chemotherapy every three weeks for 18 weeks and then a double mastectomy.
“I fell apart,” she says. “I thought about my poor children and my husband who was stuck with someone who is defective. And after chemo and surgery I was in terrible pain.”
But instead of giving up, she turned to the palliative care team at the Memorial Cancer Institute in Broward, where she was being treated. And today she is cancer-free and enjoying life.
“With all the research and new medications, cancer doesn’t have to be a death sentence,” she says. “But it is something with which I had to cope and now I have to live.”
Coping is what palliative care is all about. In case you’ve never heard of it, palliative care involves an interdisciplinary group of caregivers who work to relieve suffering and improve the quality of life of people with serious or chronic illnesses as well as their families, explains Dr. Patrick Reynolds, the cancer institute’s medical director of oncology support services.
Although many hospitals offer palliative care when treating a variety of diseases, the teams at cancer centers handle the special needs of patients dealing with current tumors and treatments as well as long-term effects.
From the 1970s through the 1990s, palliative care was synonymous with hospice — end-of-life care when no more medical treatments are available. But by the end of the 1990s and into the current century, more and more doctors have realized that comfort should not be reserved for the dying.
“So as we come to the present moment, palliative care has become focused on pain and symptom management from day one of a diagnosis,” explains Dr. Sameet Kumar, a clinical psychologist at Memorial Cancer Institute.
The physician subspecialty of palliative care was established in 2006. Today, 80 percent of U.S. hospitals with more than 300 beds offer palliative care, according to the Center to Advance Palliative Care (CAPC). Records show that 19 percent of palliative care consults are linked to cancer, adds Dr. Lynn Meister, medical director of the Pediatric Palliative Care Team at Joe DiMaggio Children’s Hospital at Memorial Regional Hospital in Hollywood.
“We are here to provide an extra layer of support,” she says. This can include pain and symptom management, psycho-social and spiritual support as well as integrative therapies.
Palliative care is often covered by insurance, and the Veterans Administration Healthcare System was an early adopter.
Palliative care doctors working with cancer patients and survivors first focus on pain, whether it comes from the cancer itself or is the result of treatment or long-term effects.
When it comes to pain, some patients don’t tell their oncologists how much they are suffering because they fear it will interfere with their treatment or they worry about becoming addicted to medication.
“They want to put their best face forward and may not understand that we can help them manage their pain,” says Kumar, who also explains to patients that adequate pain management is not an addiction. “It’s a necessity to maximize your quality of life,” he says.
Other patients, such as Palelis, suffer gastrointestinal problems from their chemotherapy and radiation. To help with nausea, vomiting, diarrhea and constipation, a nutritionist or dietitian is often part of the palliative care team.
“Diet plays a big role in our patients’ lives,” says Cynthia Wigutow, a registered dietitian at the institute who is a certified specialist in oncology nutrition. “It makes a difference because if they start feeling better, then they have the desire to live and fight their disease,”
Of course, many of her patients are concerned about weight loss. “Patients need to understand that when their bodies are under stress they burn extra calories just to get through the day. So we try to be sure they are meeting their nutritional needs,” she says.
Patients who lose too much weight can become malnourished and have to be admitted to the hospital. And then their treatment will be stopped.
“Maintaining a healthy weight throughout the whole treatment regimen is one of the things I help people do,” Wigutow says, adding that a good diet helps strengthen the autoimmune system to fight the cancer.
Most palliative care teams also include a psychologist such as Kumar. “What I see is a lot of mental, emotional and spiritual suffering,” he says.
Because the focus of palliative care is to improve quality of life, he works with cancer patients facing depression, anxiety, anger and insomnia. Sleeplessness is a recurring problem, for which he might suggest deep-breathing exercises or meditation.
Palelis says she shared some of Kumar’s deep-breathing strategies with her husband when neither of them could sleep. They also tried healing meditation.
Palliative care focuses not only on the comfort of the patient but also on that of the extended family. Palelis called on Kumar to help her work out the changing dynamic in her home as her husband took over the cooking and her mother stepped in to take care of her children and clean the house.
“He helped me to put things in perspective and to realize that cancer does not affect just one person,” she says.
Other support professionals on a cancer patient’s palliative care team might include a nurse navigator and a social worker to help the cancer patient work his way through the bureaucracies he may encounter.
For example, a social worker might know about applying for financial aid or helping a survivor get back to work after being on disability.
In another case, Reynolds had a 60-year-old patient fighting a lymphoma. He was distressed about the possibility of his wife losing her green card. That’s when the palliative care social worker stepped in to help.
“I don’t know if his wife will be able to become a citizen and stay in this country, but we can help him navigate the system,” says Reynolds. “This is something critically important to him, so we can help,” he adds.
As part of the team, rehabilitation experts can work with patients to keep them physically active. Before she went back for reconstructive surgery two weeks ago, Paleis was doing yoga and kickboxing, and she plans to get back to it soon.
There might even be a fertility specialist working with the palliative care team to consult with young cancer patients concerned with the genetics of their disease or who might be made infertile by their treatments.
If an acupuncturist is onboard, he can help relieve pain and stress. There are benefits from having a massage therapist involved in palliative care as well.
“If I have a child and his family at the hospital who aren’t familiar with palliative medicine, I tell them they can have massages and they are sold. That’s always my selling point,” says Meister.
There might also be a cosmetologist and someone to help patients work with wigs or come to grips with their hair loss. Palelis remembers learning how to apply makeup to cover skin spots that result from chemotherapy and to draw on the eyebrows that she lost during treatment.
They helped her raise her self-esteem and feel pretty again.
Today, as Palelis returns to her life, she relishes being with her family. “My doctors and the palliative care team were my cheerleaders helping me and letting me know I can get through anything,” she says.