Patients are often critical of quality -of -life programs because health -care professionals developed them with little consideration for the individual's needs, Susan Randolph, RN, MSN, said at a symposium on bone marrow transplantation for breast cancer, sponsored by The Western Pennsylvania Hospital.
"Regardless of prognosis, as long as the patient is alive she has a right to quality of life; a right to what she wants," she said. "It is the duty of all of us here to help her achieve it," said Ms. Randolph, Bone Marrow Transplant Coordinator for Caremark Inc.
Ms. Randolph advised health professionals to "ask the real experts--the patients--what they need and how we can help. What is their biggest obstacle? What is their greatest joy? Our most effective intervention to ensure that quality-of-life and survivorship issues are addressed is simply to listen to the patient."
In her role as home health-care provider for breast cancer transplant patients, Ms. Randolph has found that quality-of-life perspectives differ greatly, depending on such variables as marital and economic status, cultural experience, and age. Not everyone fits snugly into one preconceived plan, she said.
A universal issue for most breast cancer patients undergoing transplantation is pain, which affects them physically and psychologically. However, she emphasized that there are many physical, psychological, and social issues for which patients need support, advice, direction, and assistance to help them cope. These may include scarring, treatment-induced menopause in the young woman, vaginal dryness that interferes with sex, the dying woman's concern for her young children, and a single woman's concern for her changed sexual image.
Ms. Randolph said that the isolation she felt after her recent relocation to West Virginia heightened her awareness of just how alone many cancer patients are, and that women living in isolated areas may simply not be aware of their options. "They may not know about bone marrow transplants, or out-patient treatment, or home-care facilities. It's imperative that we health-care professionals link patients up with some of the many different resources available."
Identifying Psychological and Social Needs
Ms. Randolph stressed the importance of identifying and treating psychological needs. Anorexia may be treatment-induced, or it may be psychological due to depression because a patient feels ugly or her relationship with her spouse has changed.
"Regardless of the type of treatment, all breast cancer patients say life has changed--period," Ms. Randolph said. "No one can take away the fact that they've had breast cancer, and it has changed their hopes, dreams, and aspirations. All patients fear recurrence. But patients who receive psychological support usually survive longer than those who don't," she said, referring to a 1990 report by Spiegel (Cancer 66:1422-1426, 1990).
One very difficult psychosocial issue is body image, Ms. Randolph said, referring to the general media portrayal of women, which is heavily biased toward appearance. Transplant patients deal with loss of self-esteem and often have great difficulty facing family, friends, and co-workers after treatment. Connecting patients with support groups and counselors can have a major positive impact in this area, she said.
Getting Women into Trials
Ms. Randolph said that most patients feel a certain bond to health-care professionals because they understand the treatment and what the patient is experiencing. Ms. Randolph believes that spending time communicating with patients may even encourage participation in randomized trials, so important to establishing the efficacy of transplantation for breast cancer.
In her experience, most women with advanced disease feel they have a right to transplant therapy and do not want to be in the nontransplant group. However, she feels that if the importance of randomized trials is explained fully, patients will often decide to participate. Ms. Randolph said that she uses the example of randomized trials in children with leukemia, which led to today's improved life expectancy.