It’s About Living

For decades, cancer patients approaching the end of life have faced a terrible choice: continue treatment or enter hospice. By medical custom and health policy constraints, patients could do one or the other, not both. But UC Davis physician Fred Meyers is changing that.

By Claudia Morain

A new program for cancer patients has helped Linda Rangel and her husband, Delfino, make the most of this uncertain time and allowed her to complete some important projects, like scrapbooks for her sons. (Photo: Neil Michel/Axiom)

Cancer patient Linda Rangel is facing many losses. The first: a forced early retirement from her job as a grade-school teacher, a position she’s held and loved for three decades. Then there’s the loss of her thick, naturally curly hair and the travel-rich retirement she and Delfino, her husband of 29 years, had anticipated. Instead of seeing the world, the couple is kept tethered to Sacramento by Rangel’s cancer; she receives three consecutive weeks of chemotherapy, with a week off between cycles.

But she is making the best of this difficult situation, continuing to fight her disease while receiving assistance to help cope with the uncertain prognosis. It’s a rare opportunity: Cancer patients are usually forced to choose between receiving treatment, including participating in clinical trials, or receiving hospice care. It’s an opportunity made possible by a program pioneered by UC Davis physician Fred Meyers.

Meyers is senior associate dean for academic affairs for the UC Davis School of Medicine, professor and chair of the Department of Internal Medicine, founding director of the West Coast Center for Palliative Education and Research (WCCPER) and a pioneer of the hospice movement in this country.

“No one should have to choose between fighting their disease or getting palliative care—care that offers comfort through the prevention and relief of physical, psychological, social and spiritual distress,” he says. “Patients nearing the end of life can, and should, receive both at once.”

Last April in the Journal of Clinical Oncology, Meyers and John Linder, a social worker at UC Davis Cancer Center, published a moving critique of the “first cure, then comfort” model of medical care, calling it “tragic.” That model, still prevalent in doctor’s offices and hospitals throughout the United States, leads to the dreaded medical cliché: “I’m sorry, there’s nothing more we can do.”

Instead, Meyers has made it a mission to replace the either/or model with an alternative he calls “simultaneous care.” In the process, he is changing the practice of oncology in the United States.

The National Cancer Institute rewarded his efforts with a $2.1 million grant to study the approach. The American Hospital Association two years ago honored Meyers, WCCPER and the UC Davis Health System with a Circle of Life award; only three of the awards are given each year to individuals and institutions who make important contributions to improving end-of-life care in this country.

Controlling and coping

One of the participants in Meyers’ simultaneous care program, Rangel is a long-term breast cancer survivor who was diagnosed with a second malignancy, ovarian cancer, nearly four years ago. Following surgery and chemotherapy for that tumor, she enjoyed a 10-month, disease-free remission. But the cancer recurred two summers ago, this time in her liver and spleen.

“The hardest thing for me has been accepting my mortality, accepting that this is how it’s going to be,” says Rangel, who has four sons and two grandsons. “Also knowing that my kids are not going to have me around when they get married. And not being able to be the kind of grandmother I’d like to be.”

Through the simultaneous care program at UC Davis Cancer Center, Rangel continues to receive treatment for her disease. She has enrolled in two clinical trials since her cancer recurred. But treatment success has been redefined—rather than a cure, she and her doctors now hope to control the cancer and gain additional years or months during which she can take trips to Tahoe with Del, visit her sons and grandsons, read good books, tackle little projects around the house and do all the other things she enjoys.

For Rangel, success has also come to mean doing everything she can to make her death, whenever it may come, bearable for her husband and family. “I’ve organized my house, taken care of all of the stuff I don’t want the kids to have to do,” she says. She has made scrapbooks for each of her sons. She and Del bought cemetery plots and caskets.

“You’d think it would be really depressing,” she says. “But it was actually kind of uplifting, knowing that it’s done now and that our kids won’t have to deal with it.”

In addition to receiving treatment, Rangel and her family have also received assistance to help them cope with these end-of-life issues.

Rangel and her husband participated in a National Cancer Institute-funded study, initiated by Meyers, to test whether a simple intervention—three 60- to 90-minute sessions with a social worker, nurse or health educator, with regular phone calls for six months after the sessions—can make a difference in the lives of cancer patients and their families. The study will follow more than 800 patients at UC Davis and five other cancer centers in three states around the country.

In the study, a social worker coaches patients and their family caregivers in a strategic approach to problem-solving drawn from the book The American College of Physicians Home Care Guide for Cancer, edited by Peter Houts. The book teaches the COPE approach. COPE is an acronym for creativity, optimism, planning and expert information. Steps include clearly defining a problem, gathering expert information about it, brainstorming a range of solutions, devising a plan, anticipating potential obstacles, adjusting the plan accordingly, implementing the plan and evaluating the results. Study participants also practice new communication skills.

The approach has helped Rangel with practical problems, like dealing with chemo-
therapy-related fever and rash. It has also helped her maintain a positive outlook: “That’s a really important thing. Everybody has to have a little pity party every now and then, but it defeats what you’re trying to do, which is to enjoy every day of your life that you can.”

Meyers and co-investigator Joan Franceschi Blais ’73 expect to find in this study that when patients acknowledge the possibility of death and learn ways to face it, they have less distress, better control of their symptoms, improved quality of life and are better able to prepare for death. The researchers also expect to see increased participation in clinical trials and more appropriate use of health-care resources (fewer avoidable emergency room visits, for example). And, if successful, the approach should prove useful to patients throughout an illness, not just at the end of life.

An earlier Meyers study, in which social workers and nurses made house calls to terminally ill patients, demonstrated that simultaneous care can have significant benefits. In that study, the cancer patients who received psychosocial and nursing support reported their quality of life improved over the course of the study, even as their disease progressed.

Sacramento lobbyist Kathryn Rees credits the simultaneous care that her 81-year-old father received through the study with helping the whole family, especially when her mother also developed cancer and both parents moved in with Rees. “During their time with us, neither one had a hair on their head, nor an eyelash. But they sat with each other on the sofa, holding hands, smiling and laughing. They had side-by-side hospital beds. They had a very profound marriage, and they became even closer during this. They were prepared to die, and they did so with greatdignity.”

Blais, program administrator for the simultaneous care project, notes that study participants invariably state that they wish they could have had this type of intervention sooner—to have the opportunity to talk about topics ranging from depression, finances and sexual problems to getting the companionship and support they need from family and friends.

“In one situation, a patient with tears in her eyes said to one of the educators, ‘If only we had met you sooner,’” said Blais. “We are finding that it is very rare for patients to be asked how they feel emotionally. Rarely are patients given a chance to sit down with a patient educator to work out a plan for problem-solving a difficult issue.”

A call for change

The separation of treatment-focused care from palliative care has been a target of increasing criticism in recent years. A June 2001 report by the National Cancer Policy Board of the Institute of Medicine and the National Research Council called for reforms in both medical practice and Medicare policy.

One of the barriers that separate comfort care from treatment is regulatory. The Medicare Hospice Benefit that pays for 80 percent of hospice care in the United States is not designed to cover the costs of clinical trials or standard chemotherapy. Most hospice programs, therefore, require patients to have stopped systemic therapy before enrolling.

Another barrier is the perception, shared by patients and physicians, that palliative care should be a last resort, used only after disease-directed treatment options have been exhausted. “When viewed as an either/or proposition, palliative care can look like giving up on therapy or giving up on the patient,” Meyers and his coauthors note in the Journal of Pain and Symptom Management.

Meyers hopes his clinical research will help change that perception. He argues that palliative care to reduce physical and emotional suffering should be integrated into treatment from diagnosis forward, whether the outcome is cure, remission or death. The need for palliative care will be minimal early on, greater at the end of life.

“This is not about giving up,” he says. “It’s about increased quality of life and enhanced coordination of care. It is not about dying. It is about living with cancer. It’s not less care. It’s more care.”

Meyers is convinced, and hopes to prove, that simultaneous care is also cost-effective. He believes that patients who receive appropriate pain and symptom control will make fewer avoidable trips to the emergency room and patients who have received education about symptom management will require fewer routine and urgent doctor visits. Family members also miss fewer days of work and suffer less stress when simultaneous care is provided.

To Meyers, it’s a simple matter of returning medicine to its roots. He quotes Hippocrates: “To cure sometimes, to relieve often, to comfort always—this is our work. This is the first and great commandment.”

Claudia Morain is public information officer for the UC Davis Cancer Center.