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Sharing the Burden: Palliative Care Team Helps Patients, Families Through Difficult Timesby Karen Stuyck
Even as they try to cope with the physical consequences of their disease, patients who are dying of cancer have a host of other concerns: Will the money from my life insurance policy be enough to take care of my family when I am gone? How will my death affect my children? When the time comes, will I be able to face death with peace and dignity? Helping patients and their families through this difficult time requires a team as diverse as the problems and issues that arise at the end of life. At The University of Texas M. D. Anderson Cancer Center, physicians, nurses, nutritionists, social workers, chaplains, and counselors work together to help critically ill patients “express their maximal physical and psychosocial potential for as long as possible,” said Eduardo D. Bruera, M.D., professor and chair of the Department of Palliative Care and Rehabilitation Medicine at M. D. Anderson. The entire palliative care team makes regular visits to each patient’s room, listening to concerns and offering solutions to help the patient have the best possible quality of life and remain as autonomous as he or she can be. The family is encouraged to attend these visits, or they can hear the team’s recommendations on an audiocassette. On a typical visit, the palliative care group makes more than a dozen recommendations, said Dr. Bruera. “These issues vary enormously from one person to another,” he said. In addition to dealing with the patient’s medical concerns, the group might be asked to help someone obtain medication coverage, make a will, reconnect with a religious community, or contact an estranged relative. Resolving these personal issues can bring the patient great peace of mind, Dr. Bruera said. Sometimes, patients at the end of life appreciate just having the opportunity to speak frankly about the things that are distressing them—without worrying about burdening a family member. Most patients are referred to M. D. Anderson’s palliative care program while they are receiving treatment, so palliative care is integrated with the primary cancer therapy. The palliative care staff tries to tailor their approach to each individual patient. One patient, for instance, might choose to be very actively involved in his or her care, while another wants the physician to make the end-of-life care decisions. “We cannot take a one-size-fits-all approach to communications and decision-making,” Dr. Bruera said. A patient’s style of decision-making is highly personal and may change as his or her illness progresses. “As caregivers, we need to be sure that we understand where that particular patient wants to be in the discussion today and then tailor our communication approach,” he said. The palliative care team tries to incorporate the family’s needs into the treatment plan, not only because family members are usually responsible for taking care of the patient but also because the patient feels better when the family is helped and supported. The team makes sure that each family member has a chance to ask questions, understands what is happening with the patient, and knows what to do if things go wrong, Dr. Bruera said.
“Our number one goal is the comfort and well-being of the patient,” Dr. Bruera said, “and our number two goal is the comfort and well-being of their family.” Taking care of the family extends to offering counseling. According to Estela A. Beale, M.D., a patient’s main worry often is, “What will happen to the children when I die?” Dr. Beale, a child and adult psychiatrist and associate professor in the Department of Neuro-Oncology, works with the children of patients receiving palliative care. She typically meets first with the entire family and then once with just the parents and again with each child. She helps the family deal with practical issues, such as who is going to take care of the children after the parent dies, and with the emotional aspects of the loss, such as helping the children to comprehend that their mother or father is dying. If the patient and child can discuss with each other their worst fears about their mutual loss, Dr. Beale said, they can “take advantage of the time remaining to recoup memories of their time together and create new memories.” Sometimes, for instance, the parent and child will make photo albums together, write a diary, or plan some event that they’ll both enjoy, such as playing a game or watching a movie. The palliative care staff tries to remain a presence in the family’s life even after the patient dies. Dr. Beale and other staff visit each bereaved child six months and then a year after the parent’s death to see how the child is dealing with grief and if he or she could benefit from additional help.
Signs of trouble at the six-month visit, Dr. Beale said, include school problems, symptoms of depression, intense sadness, and withdrawal and isolation from family and friends. Some children seem to do well initially but then experience problems associated with bereavement later on, sometimes on the anniversary of the parent’s death. “If we intervene at the first anniversary, we hope the children won’t have problems again later,” Dr. Beale said. The Department of Palliative Care and Rehab-ilitation Medicine also has less formal programs for connecting with bereaved families. When a patient dies, the family receives a card encouraging them to contact the palliative care staff for counseling or grief support. Also, patients and their caretakers, as well as bereaved families, are all invited to the department’s Friday afternoon teas, where they can talk to one another and to social workers, counselors, and volunteers. “Over the years, we’ve found that this informal approach is very effective in bringing in people who wouldn’t come to a more formal support group,” Dr. Bruera said. “People have tea and cookies and mingle with each other and chat.” Discussions regarding the end of life or the incurability of an illness are never easy, Dr. Bruera said. “However, there are specific techniques doctors and nurses can use to make sure that patients receive the information in the way most effective for them to understand it and also feel comfortable and supported.” But how can physicians who haven’t had the benefit of formal end-of-life training learn these techniques? Most oncologists care for dying patients on a regular basis, but numerous studies indicate that they often feel ill prepared for this emotionally difficult job. “End-of-life care is a daily issue for any oncologist,” said Dr. Bruera. “Unfortunately, most cancer training programs do not emphasize how to deal with the physical and psychosocial problems and family issues associated with advanced illness.” A 2001 survey published in the Journal of Palliative Medicine, for example, found that fewer than 53% of fourth-year medical students from six U.S. medical schools believed that their education had prepared them for treating dying patients. The students from the two medical schools that had a formal end-of-life curriculum, however, felt significantly more prepared than their peers at the other four schools. M. D. Anderson offers training in end-of-life care to doctors, nurses, and other health-care professionals through the Department of Palliative Care and Rehabilitation Medicine. Participants learn how to treat their patients’ pain, fatigue, and other physical consequences of cancer, as well as how to help dying patients deal with the psychological distress, confusion, spiritual concerns, and family issues associated with end-of-life care. Dr. Bruera said that health-care professionals also come to M. D. Anderson to observe the palliative care team in action and learn how to relate more effectively to dying patients. Physicians often visit the department for a few days or even a few weeks at a time. When health-care professionals are able to “see the techniques used with patients, ask questions, and participate, they can really feel much more comfortable and effective in communicating with patients who are near the end of their lives,” Dr. Bruera said. “The good news,” he added, “is that our ability to serve patients who are dying of cancer is much, much better than it was only 10 years ago.” For more information on this topic or for questions about M. D. Anderson’s treatments, programs, or services, call askMDAnderson at (877) MDA-6789. Other articles in OncoLog, July/August 2003 issue:
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