The Role Of Cancer Supportive Care In Enhancing Quality of Life
A Comprehensive Program for Cancer Patients and Their Families
Ernest H. Rosenbaum, MD, David Spiegel, MD, Pat Fobair, MSW, MPH, Margaret Hawn, RN, Bernadette Festa, MS, RD, Bita Nouriani, Holly Gautier, RN, and Michael Silverberg
If quality of life can be improved, the patient's life will be better, happier, and longer.
There is a covenant between patients and physicians, as described by Cardinal Joseph Bernardin of Chicago in a speech to the AMA House of Delegates on December 5, 1995. "The covenant is a promise that the [medical] profession makes, a solemn promise that it is and will remain true to its moral center. In individual terms, the covenant is the basis upon which patients trust their doctor. In social terms, the covenant is the grounds for the public's continued respect and reliance on the profession of medicine."
A physician's goal is to be an agent of beneficence, which involves giving patients the opportunity to make personal choices in directing their own care to ensure quality of life. Improving quality of life has recently become the predominant goal of treatment, especially when cure or prolongation of survival is not possible. Quality of life, survival, and tumor regression are endpoints we are all striving for. Our goal is to provide a Total Patient Care Program to assist cancer patients with their treatment.
Until recently, too little attention has been paid to cancer patients' quality of life. Clinical trials have suggested that one can measure quality of life as an independent predictor of survival.1 The relation between survival and QOL measurements was tested among 122 inpatients and 96 outpatients with malignancies at one of four sites (colon, breast, ovary, or prostate). Patients were assessed according to the Memorial Symptom Assessment Scale (MSAS), a measure of the frequency of, severity of, and distress caused by physical symptoms. Patients may be under-assessed regarding both the number and severity of symptoms. Measurements of physical symptoms and related distress offer additional prognostic information concerning the survival of patients with cancer and may account for the predictive value of QOL scores.
A recent article from Mayo Clinic on optimism and depression shows that those with depression have earlier deaths than those who are optimistic.2 Maruta et al, studying 1145 consecutive patients on the Minnesota Multiphasic Personality Inventory (MMPI), concluded that a pessimistic explanatory style, as measured by the Optimism-Pessimistic scale of the MMPI is significantly associated with mortality. It was not known how a pessimistic explanatory style acts as a risk factor for early death, but it was postulated that through the mind, the optimists have increased longevity. It may be related to their attitude toward medical care, where optimists are more active in seeking medical help and less prone to self-blame and catastrophic thinking. The question is whether a change in attitude towards optimism can help lead to a change in one's future and longevity.
A part of coping with cancer depends on the quality of life before the illness occurred. This is related to personal strengths, social and financial security, and successes in life and interpersonal relationships. Simply trying to maintain one's lifestyle as it was before the onset of illness is very difficult and can become a full-time task for all involved.
Several studies (Spiegel / Fawzy) have shown that group supportive care has improved survival. We are also collecting data to evaluate the effectiveness of the Cancer Supportive Care Program in hopes of developing new methods of supportive care and investigating ways to improve quality of life.Research Objectives:
Measures of Survival An assessment of other complementary prognostic factors:
- The stage, severity and aggressiveness of the cancer (pathology evaluation)
- Measurements of physical symptoms, distress, will to live or hopelessness and other Quality of Life scores
- Karnofsky Performance Score (KPS)
- Tumor Size Reduction
- Duration of Remission
- Disease related symptoms (shortness of breath, fever, sweats, weight loss or a combination of factors)
- NSAS - (patient related multi-dimensional instrument)
- General Distress Index (GDI) - overall symptom distress (worry, irritability, nervousness)
- MMPI - Mayo clinic study on optimism vs. depression and hopelessness
- Physical symptoms: lack of appetite and energy, fatigue, pain, constipation, nausea, vomiting, diarrhea, dry mouth, mouth sores, hair loss
Cancer patients often face an uncertain future with many potential problems and fears. Preventive rehabilitation programs are needed to restore function, relieve symptoms and side effects of cancer therapy (fatigue, depression and pain) and provide supportive care to improve quality of life.
The Cancer Supportive Care Program complements standard cancer treatments. The program includes practical and timely information and educational activities which can meet each patient's needs.Patients and their families are offered comprehensive supportive care services at no cost.
The goal of a cancer treatment is to cure disease when possible, extend life, improve quality of life after diagnosis, and to palliate symptoms during therapy (radiation and chemotherapy), and at the end of life. More specific goals of the Cancer Supportive Care Program are outlined below:
- To reduce the morbidity and toxicity of disease and/or related therapy and to improve general physical and mental health.
- To improve the quality of life for cancer patients on therapy as well as for long-term cancer survivors.
- To expand currently available cancer supportive care modalities.
- To address specific problems confronted by cancer patients and their families/friends.
- To develop new and innovative programs to help reduce the problems and find solutions for cancer patients (as well as their families and friends) that will enable them to maintain control as they face the side effects of therapy.
- To conduct research, evaluating and assessing the program's effectiveness.
- To develop an outreach program for multiple centers based upon our model locally, nationally, and worldwide.
Advantages of the Cancer Supportive Care Program:
- Offers patients and families a way to cope with cancer problems with the support of their medical team;
- Adds a 5th Therapeutic Dimension for patient care to complement and reduce side effects of surgery, radiation, chemotherapy and immunotherapy;
- Improves patients' health status and ability to cope, fights their illness, and helps maintain their independence;
- Aids the medical team by providing a simple, inexpensive way to integrate these support services into a traditional or complementary care program.
The program's informational service, educational modules and tools include:
- Book - Cancer Supportive Care (Amazon.com, Stanford or UCSF Bookstore or Cancer Center Gift Shop)
- Web site - frequently updated information - http://www.cancersupportivecare.com
Stanford Library education, website education and video programs - http://healthlibrary.stanford.edu
- CSCP four-part Introductory lecture course on Cancer Supportive Care
- A weekly lecture series including classes on stress reduction, mindful-meditation, biofeedback, fatigue reduction, will to live, coping with cancer, pain control, sleep problems, pharmacological support, nutrition and exercise
- Videos on exercise, fatigue reduction, and pharmacology (ways to reduce cancer therapy side effects), and information about herbs and supplements
- A monthly newsletter with supportive care updates from the CSCP at Stanford
- Educational information packages on cancer supportive care subjects
Preventive rehabilitation programs are needed to palliate (relieve) symptoms and provide supportive care to help patients maintain and restore the functional status which existed before a diagnosis of cancer.
CSCP utilizes a series of educational modules, lectures, videos, Internet programs and workshops covering supportive care services related to cancer and therapy. The programs provide information, literature, one-on-one group classes, teaching and support to promote health and coping skills. Video programs have been produced to enhance education on various cancer supportive care topics. These programs will be available to newly diagnosed patients undergoing therapy, patients in remission, and their families and friends. CSCP provides vital information that can improve quality of life.
The gold standard of response to therapy is set by comparing measurements from a tumor baseline to grade how medical efforts affect cancer status, and by the quality of life as judged by both clinical studies, and the patients (and family and friends) themselves. This is not always easy to measure. We usually use two or more points in life for comparison - and there are many variables with remissions and relapses; each patient is also different, physically and psychologically. Each tumor is genetically different depending on its origin - whether from breast, lung, or colon. There are also fluctuations in how one feels due to the effects of cancer and/or treatment which impact lifestyle, will to live, fighting spirit, and psychological status.
Progress Report Stanford Complementary Medicine Clinic Cancer Supportive Care Program
March 1999-Program Started
With the cooperation of the Stanford Hospital and Clinics Departments of Psychiatry, Radiation Oncology and Medical Oncology, the Cancer Supportive Care Program was initiated at the Complementary Medicine Clinic at 1101 Welch Road, Building A, Suite 6.
Patient-oriented Program Activities:Weekly Lecture and Workshops
Education and informative lectures are provided to cancer patients and their families. Lectures take place each Wednesday from 10:00 to 11:15 am. There is a rotating schedule of topics such as: Cancer and Sexuality, Managing Side Effects of Chemotherapy, Fatigue Management, and Pain Control Techniques, as well as many other topics of interest. Workshops are designed to increase interaction with the participants. Areas of interest include: Poetry and Healing, Yoga, Art for Healing, Forgiveness, Sexuality etc.
A bi-weekly exercise program is taught by our Physical Therapist and Exercise Physiologist. The program is adjusted to each patient's physical capacity. All levels of exercise are taught, encompassing bedbound exercises, chair level exercises, and standing aerobic exercises.
A fatigue program has been presented by Pat Kramer, RN, OCN, cancer fatigue specialist on a drop-in basis. Pat also presented to participants in the weekly lecture series.
Cancer Supportive Care Web site designed and developed by Ernest Rosenbaum, MD in 1999 as an update of new information to the book "Cancer Supportive Care." Extensive website includes information on various cancer supportive care topics. Website development continues on an ongoing basis.
Nutritional consultation provided to program participants free of charge. Lectures and weekly drop-in program developed. Program development continues.
Cancer support group started to offer psychological support to patients in varying stages of treatment and recovery. Group is held weekly and is facilitated by Pat Fobair LCSW.
Research Activities With the help of Bita Nouriani, Research Associate, data is collected from all new patients to determine value of program. Stress, Quality of Life, Pain scales are all measured. We continue to gather data and final analysis is pending. Data is acquired from weekly class evaluation to determine quality of speakers and other participant interests.
First newsletter was distributed at Horse Cutting fundraiser, and also posted on the website. Newsletter activities are ongoing.
Tai Chi, Chi Gong, YogaAnother way to help support QOL is by using diversion programs of the arts:
Tai Chi, Chi Gong, and Yoga are added to the Program curriculum. Two classes of each are offered every week. New classes were added to expand the exercise and relaxation support program.
Poetry for Healing
Poetry for Healing workshops are scheduled during the Fall quarter. Three workshops in all are scheduled.
Digital video equipment was bought with Program funds. VCR and CD burner to enable CSCP to download filmed lectures to website and Stanford Health Library. Plan to have CDs available to patients as a free offering. Laptop and Power Point Projector were acquired for presentations and to share use of with the SHL. A series of 10 professionally filmed videos made:
- 1. Exercise for Life-Stage 1: Beginning to Move
- 2. Exercise for Life-Stage 2: Seated Resistance
- 3. Exercise for Life-Stage 3: Up and Around
- 4. Taking Control of Your Treatment
- 5. Managing Cancer Fatigue
- 6. Dealing With Loss and Grief
- 7. Protection During Radiation Treatments
- 8. Nutritional Update 2000
- 9. Dealing With GI Problems During Chemo
- 10. Introduction to Immunology
Other Program Activities:
Information Development Program
A cooperative informational development program is started with the Stanford Health Library. A video library is also introduced. All lectures and workshops are videotaped and incorporated in our loaning library. Flyers and brochures for program promotion made for and distributed within Stanford Hospital and surrounding community facilities. Companion book, "Cancer Supportive Care-a comprehensive guide for patients and their families" is updated for 2000. Posters of lectures and workshops are produced.
Informational presentations about the Program are given to community groups such as Lymphoma and Leukemia Society, San Jose Prostate Support Group, ASCO, Hospital Nursing and Social Work staff.
Stanford Health Library (SHL) Collaboration
A collaboration with Stanford Health Library was formed to expand upon the educational efforts of the CSCP. Internet linkage to and from SHL has been formed. A cooperative evening lecture series is being developed with SHL.
Promotional efforts increased with the help of Randy Mont-Renauld. Newspaper ads placed. Books and promotional items dispersed to community physicians and other community facilities.
"Horse Cutting" event was held to raise funds for the Cancer Supportive Care Program. The event was held in Livermore, California and raised approximately $30,000. Grant writing activities have been started and continue. Solicitations to Public and Private sectors continue.
Adoption by Other Facilities
Presently, Kaiser San Francisco and Kaiser Oakland have adopted the Program. The Program is under consideration by many other facilities including Loma Linda in Southern California, etc.
Cancer Supportive Care Program Administrative Directors
- David Spiegel, MD, Psychiatry - Director Complementary Medicine Clinic
- Ernest Rosenbaum, MD, Oncology - Director CSCP
- Alexandra Andrews - Webmaster, CSCP
- Holly Gautier, RN - Associate Director, CSCP
- Pat Fobair, LCSW, MPH - Program Coordinator
- Margaret Hawn, RN - Program Support
- Bernadette Festa, MS, RD - Nutritional Program Coordinator
- RoseAnn Kushner, RN - Manager, Complementary Medicine Clinic, Administrative Support
1Chang VT, Thaler HT, Polyak, TA, et al: "Quality of Life and Survival", Cancer, July 1,1998/Vol 83 p173-8
2Maruta, T, Colligan, RC, Malinchoc, MS, and Offord, KP: "Optimists vs Pessimists: Survival Rate Among Medical Patients Over a 30-Year Period", Mayo Clin Proc. 2000; 75:140-143