Palliative medicine isn’t hospice care, it’s a support system devoted to improving quality of life
Bre Tipps’ life turned upside down in January 2012 after she underwent routine surgery to remove benign fibroid tumors from her uterus.
“I woke up in the recovery room to see my doctor standing over me, looking concerned,” she recalls. “He told me I didn’t have fibroids after all. I had ovarian cancer.”
The 26-year-old mother of three was given six months to live. That’s when she decided to make the five-hour drive to Houston from her tiny hometown of Grand Saline in northeast Texas. She wanted a second opinion from MD Anderson cancer specialists. And she wanted to fight.
“I have a husband. My kids are still young,” she says. “I have a lot to live for.”
At MD Anderson, Tipps sailed past her six-month end-of-life prognosis, and today at age 29, she’s well into her third year of treatment. Her cancer was advanced when detected and is still there, but she’s managed to stay a few steps ahead of it with chemotherapy, surgery and experimental drugs.
Sometimes the medical procedures are grueling and the side effects severe. Tipps has suffered pain, nausea, fatigue and, occasionally, depression.“
I know I’m getting the best medical treatment,” she says, “but I need somebody to help me deal with the side effects and everything else cancer brings.”
That “somebody” is a team of health care providers, counselors, clergy members and others who are specially trained in palliative care — a branch of medicine that helps patients deal with the physical side effects and emotional stress that come with cancer treatment and diagnosis.
At MD Anderson, outpatients receive palliative care in the hospital’s Supportive Care Center. Each new patient undergoes a 10-point checkup, much like a car in a mechanic’s garage, explains Eduardo Bruera, M.D., chair of Palliative, Rehabilitation and Integrative Medicine. From that initial visit, a team is assembled to address each patient’s requirements.
“One person may need a gastroenterologist for nausea, a psychiatrist for anxiety and a pain specialist for discomfort,” Bruera explains. “Another may need a sleep specialist for insomnia, a respiratory therapist for shortness of breath and a chaplain for spiritual support. Others may benefit from having a social worker, pharmacist, nutritionist or oncology massage therapist on their teams.”
When visiting the Supportive Care Center, patients meet with their team members in one appointment, under one roof.
“Instead of visiting five specialists in five clinics, your custom-designed palliative care team is here in the Supportive Care Center,” Bruera explains. “In one day you see them all, then you go home.”
Hospitalized patients can receive palliative care in their hospital room as well. On the 12th floor Andreas Beck Inpatient Palliative Care Unit, patients with advanced cancer are preparing to transition to hospice or end-of-life care, but first need their symptoms brought under control. Each morning, teams of palliative care professionals visit each patient, dispensing comfort and care.
“I’ve seen patients with unrelenting pain and nausea arrive on our unit, and within 48 hours they’re calm and comfortable,” says licensed professional counselor Martha Aschenbrenner. “Our palliative care team works magic.”
On other floors, patients battling various stages of cancer are visited by mobile palliative teams.
“We’re adding life to their days, not just days to their lives.”
Extra layer of support
The goal of palliative medicine, Bruera says, is to give patients the best quality of life possible, not by providing primary cancer care — the oncologist does that — but by delivering pain and symptom relief, as well as spiritual and psychosocial support.
“Think of it this way,” he says. “Oncologists treat the patient’s cancer; palliative care teams treat the cancer patient. The emphasis is on the patient’s needs, not the disease.”
Modern medicine offers wonderful therapies to treat cancer, Bruera says, but many of those treatments produce unpleasant side effects. Palliative care, sometimes called “comfort care” or “symptom management,” provides an extra layer of support, beyond the medical care provided by oncologists.
“Palliative care helps patients tolerate their treatments and get on with their lives,” Bruera says.
Tipps has been able to continue working as an office assistant at a natural gas pipeline company and even organized a “Paint the Town Teal” ovarian cancer fundraising event in Grand Saline. Last year she attended the National Ovarian Cancer Coalition’s annual conference in Washington, D.C., and testified before Congress about the need for increased ovarian cancer research funding.
Throughout her cancer journey, Tipps has had a strong support network of friends and family, including her husband, Terry; her parents, Liz and Ronald; and her hometown church family.
“My family and friends are wonderful, but my palliative care team keeps me going,” she says. “They tell me things like, ‘You don’t need to suffer. We can lessen your pain.’ I’m grateful for their help. I couldn’t have made it this far without them.”
Derived from the Latin palliare, “to cloak,” palliative care addresses a patient’s “total pain.”
“Cancer patients may question why God is letting them suffer,” says Aschenbrenner. “They may fear their treatment won’t work or worry about cancer’s effect on their marriage or children. They’re in physical, spiritual and psychological pain.”
These various forms of pain are deeply interconnected, Aschenbrenner says.
“It’s hard to control physical pain in a person who’s having a spiritual crisis, and it’s difficult to soothe psychological pain in someone whose physical pain is uncontrolled,” she explains. "They’re all part of one big package."
“We want to help people live as well as they can, as long as they can.”
Any age, any state
Palliative care often is confused with hospice. That’s understandable because it’s an important component of hospice care, says Suresh Reddy, M.D., director of Palliative Care Education.
But while hospice is tailored to patients whose life expectancy is generally six months or less, palliative care “is in no way limited to those who are at the end of life, have a terminal disease or whose outcome is expected to be terminal,” Reddy says.
From infants to the elderly, from the newly diagnosed to the critically ill, palliative care is appropriate “at any age, at any stage.”
“Most people who need palliative care are not dying, but living for a long time with serious and complex illness,” Reddy says.
If a patient’s cancer cannot be treated, only then does the palliative care focus shift to end-of-life care, which is often provided by a hospice.
At the heart of palliative medicine is a conversation, or series of conversations, about a patient’s goals and preferences for care.
This requires skill, compassion, a good listening ear and, if the patient is terminally ill, a level of comfort with topics many people would rather avoid.
Palliative care specialists help patients and families weigh the benefits and drawbacks of various treatments. Some patients want to “pull out all the stops” and try everything, while others may prefer comfort-focused care or something in-between.
“We ask our patients their understanding of their disease,” explains Paul Walker, M.D., medical director for the hospital’s inpatient Palliative Care Unit. “We find out what they know and, if their disease is terminal, what they hope to achieve in the time they have left. Then we help them achieve those things that are important to them.”
Aschenbrenner says the inpatient palliative care team is privileged to witness some extraordinary events.
“We’ve had several weddings on the unit,” she says. “Families are so willing, at one of the most daunting times of their lives, to let us come in and walk alongside them. I’ve witnessed vulnerability and sadness, along with remarkable tenderness, resilience and healing.”
Aschenbrenner readily admits to shedding a tear with families.
“This job is not a piece of cake,” she says, “but I wouldn’t dream of doing anything else.”
Every doctor who sees seriously ill patients should possess the skills to lead conversations that put patients’ desires first, says Bruera. But research shows that between one-quarter and two-thirds of patients with advanced cancer don’t have such talks with their physicians, and when they do occur, the conversations often take place in the hospital just a month or so before death.
“In fact, palliative care is most useful when it’s started early, along with cancer treatment,” Bruera says. “This way, it can help treat common symptoms caused by treatment and ensure the best quality of life.”
It boils down to this, Bruera says:
“People have priorities in their lives besides just living longer. We must find out what their priorities are by asking, but we don’t ask. As physicians we’re not rewarded for having conversations. We’re rewarded for doing operations or procedures well.”
Regardless of a patient’s prognosis, Bruera says his message to patients is this: “‘We hope you get better, but if you don’t, what do you want?’ We push the envelope on what’s important to the patient.”
Just knowing that there’s a plan in place offers families peace of mind,” he says. “And that helps them concentrate on their loved one.”
After battling bile duct cancer for two years, Rachel Henry was tired. She’d made countless round trips from her home in Huntsville, Texas, to MD Anderson, endured numerous chemo and radiation sessions, tried a host of different drugs and been confined to the intensive care unit four times.
Earlier this year, the palliative care team helped Henry clarify how she’d like to spend the time she had left. Instead of more medical procedures, she opted for “comfort care,” or treatment of symptoms. No more poking and prodding, no more machines.
“It took Rachel all of 10 seconds to make that decision,” says her sister, Mary Gail Doddridge. “She was ready.”
Before she died on April 17 at age 64, Henry, a retired home economics teacher, was able to spend valuable time with her children and grandchildren and share family recipes from her hospital bed.
That extra time focusing on loved ones and quality of life is something the family will always cherish, Doddridge says.
Palliative care has come a long way since it was first introduced in the United States in the 1970s.
“At first, physicians and other health care providers were suspicious of palliative care practitioners, because they didn’t understand our role,” Bruera says. “They thought of us as ‘grim reapers.’ Acceptance was slow.”
Today, palliative care is the fastest growing medical specialty in the United States, and the fastest growing department at MD Anderson. Almost 90% of large hospitals — those with 300 beds or more — now have palliative care programs, and most cancer centers have added palliative care supportive services.
Several groundbreaking studies have fueled this growth, including results from a lung cancer patient trial published in the New England Journal of Medicine in 2010. The study revealed that lung cancer patients who received palliative care at the same time as their cancer treatment felt better, had fewer emergency room visits, were less depressed, less likely to die in the hospital and lived three months longer than similar patients getting excellent cancer care but no palliative care.
Recognizing these benefits, the Institute of Medicine last fall issued a report that said every patient should have access to high-quality, affordable palliative and hospice care when and where they need it. The report, which Bruera helped author, is expected to produce sweeping changes in patient care across the country.
“Helping people live longer is great,” says Bruera. “But what’s really important is that we’re improving quality of life for our patients. We’re adding life to their days, not just days to their lives.”