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Patient Empowerment through Supportive Care
Ernest H. Rosenbaum, MD and David Spiegel, MD
The Goal Is Living with Good QOL
Patient Empowerment Resources
Cancer patients commonly find it difficult to maintain their lifestyles, and sustaining quality of life (QOL) can become a full-time task as they confront fear, fatigue, pain, therapeutic side effects, and the contemplation of the possible failure of therapy and death. 1 Much of a patient's ability to cope with cancer depends on their emotional, cognitive, and social resources before their illness as occurred, and is related to social and financial security, success in life, and family relationships.2,3 Empowerment results from the utilization of coping strategies that help patients to attain a higher level of control and mastery over illness. Integrative supportive care initiatives enable patients to take control as active participants in their treatment.
People are transformed by their circumstances. While some gain strength by fighting for their lives, others are debilitated both emotionally and physically by the mortal threat of a cancer diagnosis. The will to live helps promote patient engagement and the ability to cope with an illness.
Psychological Changes - Determination, Hope, and Attitude
To instill a patient's faith in their treatment, it is vital to sustain hope and a positive attitude. Even though their future may be unpredictable because of the seriousness of their disease, it is important for patients to be realistically optimistic, living each day, but looking forward to the next. The adiagnosis of cancer oftentimes leaves patients feeling helpless and at the mercy of a process that is out of their control. The rigors of medical and surgical treatment can compound this helplessness. Therefore, empowerment is a critical factor for cancer patients who undergo the psychological transition from good health and independence, to a state of illness and dependency on their medical team, family, and friends. Feeling empowered counters the inevitable helplessness that is associated with illness by enabling cancer patients and their families to engage in activities that allow them to reassume control over their bodies and their lives. key to this is helping patients hope for the best, while realistically preparing them for the worst. There is always the hope that a disease that is not curable today may be curable in the future, and that the patient will be alive to participate in new treatments. But it is also important to help patients face the possibility of a shortened life, and to plan accordingly.
Support of Family and Friends
For a patient, the assistance of their loved ones is vital. At least one other person will likely play a significant role in a patient's ongoing support. Mortality is difficult to comprehend, but we often approximate an understanding of it through loneliness, and an absence of loved ones. Thus, isolation in the face of death amplifies existential anxiety. Familial support is critical, as no one wants to experience cancer alone.
Importance of Medical Team
The role of caregivers provides positive reinforcement and persistent support to help patients cope with their diagnosis and treatment. Implicit trust in the medical team is vital. Trust is earned with time. While many request second opinions for reassurance and confirmation of diagnosis and therapy, the desire for clarity and honesty is prevalent. Patients want and need clear communication, control over aspects of treatment in which they can participate, and compassion from their physicians. Working with members of the health care team, as well as family and friends, following diagnosis helps ameliorate the initial shock of the diagnosis and therapy.
Importance of Information
In addition to the guidance of the medical team, patients and their families/ friends need access to sound, clear, and authoritative books, literature, programs, and Internet resources that can provide the vital and enabling information needed to make informed decisions. 4, 5 These resources are also great communication tools in asking your doctor the right questions.
Relationship of Empowerment to Supportive Care
Supportive care programs help promote patient involvement and recovery by enhancing social support, teaching patients to appreciate their own coping resources through exchange of information and strategies, and improving communication skills. Following the diagnosis of cancer and during and after therapy, most patients can benefit from some form of supportive care, either individual or group, as patients needs change during the long trajectory from diagnosis to either cure or palliative care.
Psychosocial support for cancer patients in groups and educational programs is an inexpensive and effective method of providing supportive care. Shared experience and knowledge of the efforts of others in similar circumstances helps patients develop coping strategies and enables them to take control of their response to the illness. Support and empowerment can also be gained through psychosocial interventions and targeted integrative programs. Patients' coping skills can be improved through the use of guided imagery, hypnosis, relaxation therapy, and exercise (Tai Chi, Qui Gong, etc.). These techniques not only provide an avenue for relaxation, but also help in focusing on needs and developing self-control. A fighting spirit, a trusting relationships with the medical team, access to information and support programs, the support of family and friends, the balancing of life and illness, and a strong sense of hope all promoted through a supportive care regimen can enhance the empowerment of the cancer patient.
The Goal Is Living with Good QOL
Not necessarily just for survival, the importance of patient empowerment is to have control over their illness and their lives through a positive attitude and willingness to accept their condition. Patient involvement entails coping effectively with illness rather than succumbing to denial, anger, and anxiety about one's unknown future. Good QOL depends on finding a balance with illness, therapy, and living with cancer. A fighting spirit, a trusting relationships with the medical team, access to information and support programs, the support of family and friends, the balancing of life and illness, and a strong sense of hope all promoted through a supportive care regimen can enhance the empowerment of the cancer patient.
1 Spiegel D, Cordova M. Supportive-expressive group therapy and life extension of breast cancer patients: Spiegel et al. (1989). Advances in Mind-Body Medicine 2001; 17(1): 38-41.
2 Ferrell BR, Dow KH, Leigh S, Ly J, Gulasekaram P. Quality of life in long-term cancer survivors. Oncology Nursing Forum 1995; 22:915-922.
3 Sarna L, Padilla G, Holmes C, Tashkin D, Brecht ML, Evangelista L. Quality of life of long-term survivors of non-small-cell lung cancer. J Clin Oncol 2002;20:2920-2929.
4 Ayres, A., P. W. Hoon, et al. (1994). Influence of mood and adjustment to cancer on compliance with chemotherapy among breast cancer patients. J Psychosom Res 38(5): 393-402.
Patient Empowerment Resources
Cancer Supportive Care is the Fifth Dimension Therapy of cancer care providing educational modules to complement surgery, radiation, chemotherapy, hormonal therapy and immunotherapy http://www.cancersupportivecare.com
Cancer Hope Network
provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience. For more information, please call 877-467-3638
The Group Room®
is a weekly syndicated cancer talk show that is also simulcast on the Internet and XM Satellite. The program is provided by Vital Options® International TeleSupport® Cancer Network. To locate The Group Room® radio station in your area, please visit http://www.vitaloptions.org
The Wellness Community (TWC)
is an international non-profit organization dedicated to providing support, education and hope for all people affected by cancer - at no cost. For more information, please call 888-793-WELL, or reach TWC via e-mail at email@example.com
The Intercultural Cancer Council (ICC)
promotes policies, workshops, partnerships, and research to eliminate inequalities in cancer prevention and detection among racial and ethnic minorities, and medically underserved populations in the United States and its associated territories. ICC can be contacted via e-mail at firstname.lastname@example.org
The What You Need To Know AboutTM Cancer
publication series provides information on many types of cancer. Each publication includes information about symptoms, diagnosis, treatment, emotional issues, and questions to ask your doctor. Call the Cancer Information Service (CIS) at 1-800-4-CANCER (1-800-422- 6237) to order published booklets.
Dr. David Spiegel is the Jack, Lulu & Willson professor in the School of Medicine, associate chair of Psychiatry & Behavioral Sciences, director of the Center on Stress and Health, and medical director of the Center for Integrative Medicine at Stanford University School of Medicine.
Dr. Ernest Rosenbaum is a medical oncologist and leading authority on cancer care. He is a clinical professor of medicine at UCSF Comprehensive Cancer Center, and director of the Cancer Supportive Care Program, Stanford University School of Medicine.
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