Since Kathleen Huggins was diagnosed with lung cancer last November, doctors have been working hard to try to cure her. Surgeons removed part of her lung, and soon she'll begin chemotherapy.
But the 56-year-old New York City resident also benefits from a new type of medical specialty called palliative care. It has its own distinct mission: to relieve suffering and improve quality of life for people with serious illnesses.
For example, Huggins had a large, painful surgical incision in her torso. Her palliative care doctor made sure the pain was managed properly.
"They would constantly ask me what my pain level was and adjust my medication to what I needed to make me comfortable," Huggins tells WebMD.
In the days before surgery, she had prepared spiritually by talking to a rabbi -- a member of her palliative care team. Then, right before doctors took her to the operating room, that same rabbi appeared at her bedside.
"She sat there with me the whole time and just held my hand," Huggins says.
A social worker -- also on the palliative care team -- now is helping her with practical matters: obtaining a wig before she loses her hair and arranging transportation for chemotherapy sessions.
Twice each week, she meets with a counselor. This team member helps her to deal with the intense emotions that come with having cancer.
What Is Palliative Care?
Say "palliative care" and most people imagine cancer patients being made comfortable in an end-of-life hospice setting.
But palliative care is actually a new medical specialty that has recently emerged -- and no, it's not the same as hospice. It doesn't serve only the dying. Instead, it focuses more broadly on improving life and providing comfort to people of all ages with serious, chronic, and life-threatening illnesses.
These diseases may include cancer, congestive heart failure, kidney failure, chronic obstructive pulmonary disease, AIDS, and Alzheimer's, among others. "It's the whole spectrum, really," says Joseph Chan, MD, a palliative care physician in Fort Smith, Ark.
"The vast majority of America's medical schools have palliative care programs and are teaching medical students and residents about palliative care. That didn't occur 10 years ago. There was literally no education occurring on the topic," says Diane Meier, MD, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York City.
Currently, there are more than 1,400 hospital palliative care programs in the U.S., according to Meier. About 80% of large U.S. hospitals with more than 300 beds have a palliative care program, she says. Among smaller hospitals with more than 50 beds, about 55% have programs.
Typically, a palliative care team includes a physician, nurse, and social worker, Meier says. But it often involves a chaplain, psychologist or psychiatrist, physical or occupational therapist, dietitian, and others, depending on the patient's needs.
When Is Palliative Care Appropriate?
Patients like Huggins can begin palliative care as soon as they're diagnosed with a serious illness, at the same time they continue to pursue a cure. Palliative care doesn't signal that a person has given up hope for a recovery.
Some patients recover and move out of palliative care. Others with chronic diseases, such as COPD, may move in and out of palliative care as the need arises.
If cure of a life-threatening disease proves elusive, palliative care can improve the quality of patients' lives. And when death draws near, palliative care can segue into hospice care.
Quality of Life
When it comes to quality of life, each patient has their own vision.
"Each suffering is unique. Each individual is unique, and each family and the dynamics are unique," Chan says.
"There is no generalization and that's the key," Meier says. "Palliative care is genuinely patient-centered, meaning: We ask the patient what's important to them and what their major priorities are. Based on what the patients or the family tell us, we then develop a care plan and a strategy that meets the patient's goals and values."
For some people, Meier says, the goal or value might be to live as long as possible -- no matter what the quality.
"Maybe one in 10 to one in 20 patients don't care if they're on a ventilator and on dialysis for the rest of their life. They're waiting for a miracle and that's what they want," she says. "They understand the odds and that's their choice. And then we will do everything in our power to make sure that their goals are respected and adhered to."
But some patients, such as Merijane Block, care more about the quality of each day. The 57-year-old San Francisco woman was diagnosed at age 38 with breast cancer that has spread to her spine.
"My hope [is] to live as well as I can for as long as I can. Actually, for me, the emphasis is on the wellness. The length of my life has ceased to be as important as it used to be before I was diagnosed with cancer. I always wanted to live to be 100 when I was young and innocent -- like the year before I was diagnosed," she says.
Block's palliative care doctor prescribes a medicated patch for chronic spinal pain that would be debilitating otherwise.
"I have pain all the time, but I'm not living in this state of agonizing pain because my pain is actually well managed," she says.
Although pain management is a major part of palliative care, patients can also seek help with other symptoms such as nausea, loss of appetite, fatigue, constipation, shortness of breath, and trouble sleeping.
Like Huggins, people who face serious illness often need emotional and spiritual support.
Beverly, a 55-year-old San Francisco Bay Area woman who requested that her last name be withheld, was diagnosed with bladder cancer at age 37 and has had multiple recurrences. She felt outraged, as she worried that her illness might have been preventable; she believes it may have stemmed from textile dyes that she had used frequently without knowing of their cancer-causing potential.
She resents the pressure to be an upbeat cancer warrior.
"[Cancer] is not a gift. This is the worst thing that's ever happened to me," Beverly says.
Her family and friends urged her to be positive. But when a social worker allowed her to vent her anger, she began to cope with her powerful emotions. "I felt that compassion from her. I got to be a whole person in her eyes," Beverly says.
Holistic Focus
Palliative care is holistic. For patients, this means attending to the challenges that illness poses in every aspect of life. It also means that palliative care extends to family members and caregivers. Support services may include:
- educating family members about the patient's illness, treatment, and medications
- respite care for caregivers
- home help with transportation, meals, and shopping.
But flexibility is important. Meier recalls one patient, a 24-year-old woman who developed acute leukemia. She had intense bone pain, severe shortness of breath, panic attacks, anxiety, and a large, devastated family with one sibling who was a substance abuser. As a result, nobody in the family wanted her to have any pain medicine.
"You get this sense of how complex and intense the palliative care needs were for this young woman," Meier says. "Frankly, I don't think she would have gotten through her treatment at all had she not had expert treatment of her pain, her shortness of breath, her anxiety, and a tremendous amount of counseling and support for her family."
When faced with serious illness, some patients yearn for reconciliation with an estranged spouse or child, Chan says. Social workers will attempt to contact the person at the patient's request.
Is Palliative Care Effective?
With all of its emphasis on the whole person -- even one's family and relationships -- does palliative care truly improve quality of life?
In a study published in August 2010 in the New England Journal of Medicine, researchers at Massachusetts General Hospital found that advanced lung cancer patients who received early palliative care actually had lower rates of depression and better quality of life than patients who received standard treatment only.
The study of 151 patients, who were randomly assigned to get standard lung cancer care alone or to get standard care and palliative care at the same time, also yielded a surprise: The palliative care patients tended to live about 2.7 months longer. This may have been due to more effective treatment of depression, better management of symptoms, or less need for hospitalization.
For a patient with advanced lung cancer, that extra time is significant.
"If we had a new chemotherapy agent that added three months to the life of lung cancer patients, everyone would be running to invest," Meier says. "I think the important thing for the public to understand is that suffering is actually bad for your health."