ABSTRACT
Because of its focus, palliative care offers a fertile milieu in which to apply complementary or alternative therapies. Guided imagery, hypnosis, therapeutic touch, reflexology, acupuncture, massage, acupressure, music therapy, art therapy, aromatherapy, meditation, prayer, biofeedback, humor therapy, and Reiki are all examples of a wide range of complementary therapies used to provide comfort care and to better the quality of life. This article will attempt to help the patient and family narrow the field of Internet resources.
INTRODUCTION
Balfour Mount, a Canadian urologist, coined the name “palliative care” around 1973 to describe his new program at the Royal Victoria Hospital in Montreal which was modeled on St. Christopher's Hospice.Citation1 The characteristic feature of palliative care is that it is holistic; that is, it considers the whole patient physically, psychologically, and emotionally before selecting treatment, and as such, is similar in approach to alternative or complementary medicine (CAM). Holistic care emphasizes healing of both symptoms and their cause, optimizing the use of therapeutics to comfort the patient rather than cure the disease. In palliative care, cure is not the focus and, thus, complementary and holistic approaches have therapeutic possibilities.Citation2 These therapies promote self help, assist in control of symptoms, may ameliorate treatment side effects, increase a sense of well being, improve overall quality of life, and reduce fear, anxiety, and pain.Citation2
WHAT IS PALLIATIVE CARE?
The World Health Organization (WHO) defines palliative care as the active total care of patients whose disease is not responsive to curative treatment.Citation3 The Oxford Textbook of Palliative Medicine further defines palliative care as “the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life.”4 The Canadian Palliative Care Association states that palliative care “may be combined with therapies aimed at reducing or curing the illness or it may be the total focus of care.”5
Currently in American medicine, palliative care is becoming a widely accepted term for an approach to the management of a terminal illness focusing on symptom control and support rather than cure or life prolongation.Citation6 The author's preferred definition of palliative care is the holistic care of patients and families coping with chronic, life-limiting or life-threatening conditions that center on managing problematical symptoms and improving function and quality of life as defined by the individual patient.
COMPLEMENTARY MEDICINE RESOURCES ON THE INTERNET FOR PALLIATIVE CARE
As patients and families try to manage complex physical, psychological, and spiritual needs that accompany chronic disease and end-of-life, they may look to Internet resources for respite and support. There are many Web sites (over 200,000 results just from the Google search alone) devoted to CAM and palliative care. Following are a few well-founded starting points to explore this sensitive and emotional area of life.
City of Hope/Beckman Research Institute. Pain & Palliative Care Resource Center <http://www.cityofhope.org/prc/pdf/Complementary%202005.pdf>
This Web site provides a bibliography of professional journal articles that feature complementary medicine for pain management. If one were looking for information about a specific complementary medicine for a particular type of pain, this may be a helpful site. It is arranged alphabetically by author, making it difficult to zero in on a topic in which you may be interested. However, the material included is of good, reliable substance.
MedlinePlus <http://medlineplus.gov/>
When MedlinePlus is searched using the terms, “complementary medicine” or “palliative care,” search results found under the Health Topics tab are most applicable. The Alternative Medicine folder, found by searching on the term “alternative medicine,” has an excellent link to an overview of Complementary/Integrative Medicine at the University of Texas MD Anderson:
<http://www.mdanderson.org/departments/CIMER/dIndex.cfm?pn=7B632E4A-56B2-11D5-812100508B603A14>.
This site covers the basics of conventional medicine, alternative medicine, complementary and integrative medicine, and combinations of all. It covers the basic principles of integrative medicine. The site explains the major domains of complementary and alternative medicine for consumers and practitioners including “Alternative Medical Systems” (traditional Oriental, Indian, and other traditional medical systems, homeopathy, and naturopathy), “Mind-Body Interventions” (of which only a subset are considered CAM), “Biological-Based Therapies” (further subdivided into herbal/plant therapies, nutrition and special diets, and biologic/organic/pharmacologic), “Manipulative and Body-Based Methods” (including chiropractic, osteopathic, and massage therapies), and “Energy Therapies” (Biofield and Bioelectromagnetic).
NCCAM (National Center for Complementary and Alternative Medicine) <http://www.nccam.nih.gov/health>
In selecting information about complementary medicine from the Web, the pick of the sites is the U.S. government's National Center for Complementary and Alternative Medicine (NCCAM). The NCCAM is dedicated to exploring complementary and alternative healing practices in the context of rigorous science, training complementary and alternative medicine researchers, and disseminating authoritative information to the public and professionals. The site has been recently redesigned to make it easier for consumers to use. It is a good place to start, and it has some links to information on acupuncture, meditation, and mind-body health to name a few. Within the NCCAM Web site, search the Health information tab for “palliative.” The query produces a good background and overview of mind-body medicine relating to specific events, such as immunity and wound healing. Discussed briefly is the psychological help that alternatives offer to patients with chronic illness and quality of life issues. Search the CAM on PubMed database on the “Health Information” page under “More at NCCAM.”
Royal Children's Hospital Melbourne <http://www.rch.org.au/rch_palliative/prof/index.cfm?doc_id=1691>
This Web page is designed for patients and families to “explore the vast topic of complementary therapies and make informed choices.” Included are definitions, guidelines for checking out different therapies and practitioners, sites to get you started, and safeguards.
Tufts University Hirsh Health Sciences Library <http://www.library.tufts.edu/hsl/subjectGuides/cam.html>
This site is the most comprehensive in that it not only offers information for patients and families but also a curriculum designed to teach medical students evidence-based skills that can be applied to complementary and alternative medicine (CAM) and to allopathic medicine. The site includes databases of interest to patients and families that offer comprehensive referenced data on herbal medications and dietary supplements covering uses, efficacy, toxicity, and more. E-books are also made available.
Of particular interest to palliative care are the sections on “Pain and Palliative Care” and “Religion and Spirituality.” The “Pain and Palliative Care” category includes information on Disease Models for Headache, Arthritis, and Reflex Sympathetic Dystrophy Syndrome Association as well as links to national and international hospice organizations.
Numerous links to religious and spiritual sites which are so much a part of end-of-life and comfort care are listed. Many of these sites have broader implications for health promotion and mind-body health as well. The Tufts library also includes a comprehensive overview of alternative medical systems include Ayurvedic Medicine, Homeopathy, Naturopathy, Tibetan Medicine, Traditional Chinese Medicine (TCM), and Tai Chi. Manipulative and Body-based methods include Chiropractic, Massage Therapy, Osteopathic Manipulation Therapy (OTM) as well as others. Also covered are Energy Therapies of Reiki, Therapeutic Touch, and Qi Gong. Biologically-based therapies discussed include flower therapy and herbal medicine.
Nutrition sites are general as well as specific, for example, Obesity and Special Diets (ketogenic and vegetarian, American Heart Association, Celiac Disease as examples). General mind-body interventions as well as specific therapies including aromatherapy, art therapy, biofeedback, dance/movement therapy, guided imagery, humor, meditation, music, relaxation techniques, and yoga all have representation on the Tufts site.
In summary, the Tufts library covers the gamut of alternative therapies, many of which may be or have been applied to palliative care.
CONCLUSION
Complementary and alternative therapies for palliative care need to be individualized to the specific needs of patients and families. In deciding to extend a search into less reliable or less rigorously evaluated Web pages, that is, advertising, herbal supplements, laetrile therapy, and so forth, beware of invitations and exhortations to substitute these products instead of carrying forward prescribed medical therapies. View sites that discourage patients from using proven conventional treatments with healthy skepticism.
Adverse drug/drug or drug/complementary and alternative product reactions and interactions are another area of concern. Increasing numbers of adverse outcomes are being reported in the literature between and among herbals, dietary supplements, over the counter agents, and prescription drugs. Always investigate for scientific evidence of effectiveness and safety of supporting treatments whether complementary, alternative, or conventional. Be sure of provider credentials before committing to any special therapy. Patients and caregivers should discuss all options openly in the conventional medical setting with people who can be trusted. There should be clear expectations about proposed alternatives so that outcomes can be followed. Anecdotal support for complementary therapy is not a measure of evidence-based effectiveness.
Additional information
Notes on contributors
Rhada J. Hartmann
Rhada J. Hartmann, BSN, RN, CT ([email protected]) is the Director of Palliative Care and Bereavement Services, York Hospital/WellSpan Health, 1001 South George Street, York, PA 17405.REFERENCES
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- World Health Organization . Cancer Pain Relief and Palliative Care . Technical Report Series 804 , p. 11 . Geneva , Switzerland : World Health Organization , 1990 .
- Doyle , D. ; Hanks , G.W.C. ; and MacDonald , N. , eds. “Introduction.” Oxford Text of Palliative Medicine , p. 3 . London : Oxford University Press , 1993 .
- Ferris , F.D. , and Cummings , I. , eds. Palliative Care: Toward a Consensus in Standardized Principles of Practice . First Phase Working Document , p. 12 . Ottawa : Canadian Palliative Care Association , 1995 .
- Billings , J.A. “What is Palliative Care?” Journal of Palliative Medicine 1 ( Spring 1998 ): 73 – 81 .