Part I of a series on end-of-life care
By Lynn Keegan, RN, PhD, HNC, FAAN
The rapid pace of advances in medical technology during the past few decades has brought with it a host of ethical dilemmas regarding when and how to use new therapies, especially with regard to end-of-life (EOL) care. Procedures and medications developed for resuscitative events, chemotherapy directed toward cancer treatment, antibiotics aimed at acute infectious disease, radiologic treatment for conquerable tumors, and an arsenal of other modern medical marvels are used not only on the salvageable patient, but also on those who are terminal.
The irony is that simultaneous with the development and use of these technological advances, patients have turned to complementary and alternative medicine (CAM) therapies in ever-increasing numbers. While the utility of many CAM therapies is still very much in question and being investigated by researchers, some CAM treatments, by virtue of the comfort they provide, may have a place in the holistic care of patients in the final stages of life.
Aggressive Conventional Cancer Treatment Near End of Life
A recent study of 28,777 cancer patients across four years found the proportion still receiving chemotherapy within two weeks of death increased from 13.8% to 18.5% over the course of the study, and the percentage that started a new chemotherapy regimen in the last 30 days of life increased from 4.9% to 5.7%.1 Concurrent with this increased use of chemotherapy during the final stages of life were increasing numbers of patients with more than one emergency room visit, admissions to the hospital, and admissions to intensive care units in the last month of life. Moreover, those who were treated with chemotherapy were admitted to hospice when they were closer to death and were more likely to die in a hospital (34.9% vs. 29.0%, P < 0.001) than those not receiving chemotherapy.
Just by living in an area with more teaching hospitals per capita independently predicted more aggressive care in patients either on or off chemotherapy. On the other hand, a higher density of hospices in an area was associated with a significant, independent decrease in the likelihood of experiencing an indicator of aggressive care.1
Findings from focus groups of bereaved relatives, who have the perspective of having seen the full course of disease, reflected a sense that continuation of cancer treatment until very late in the disease prevented them and their loved one from realistically coming to terms with the inexorable progression of the disease.2 This study supports the argument that in some cases aggressive medical treatment continues too long, delaying or depriving patients of the opportunity for transition from active medical treatment to supportive EOL care.
Most deaths in the United States occur in the context of chronic diseases in later life and often are accompanied by potentially remediable emotional or physical suffering.3 Suffering is traditionally viewed as a state encompassing psychological distress, spiritual concerns, and various aspects of physical pain.
An Israeli study was initiated to evaluate the suffering of terminal dementia patients over the time period from admission to the last day of life.4 The study included consecutive end-stage dementia patients dying in a general geriatric department of a tertiary hospital. Patients were evaluated weekly by the Mini Suffering State Examination scale (MSSE). Seventy-one patients were studied. Mean survival of patients was 38.0 ± 5.1 days. MSSE increased during hospital stays from 5.62 ± 2.31 to 6.89 ± 1.95 (P < 0. 001). According to the MSSE scale, 63.4% and 29.6% of patients died with high and intermediate levels of suffering, respectively. Only 7% of the patients died with a low level of suffering. The researchers concluded that despite traditional medical and nursing care, a large proportion of people dying with dementia experienced an increasing amount of suffering as they approached death.5
Analysis in one study revealed six themes important to people with advanced cancer diagnoses:6
- protection of dignity,
- control of pain and other symptoms associated with disease,
- management of treatment,
- management of how remaining time is spent,
- management of impact on family, and
- control over the dying process.
The Goal for End of Life Care
Achieving a peaceful and comfortable death for patients must be a priority.5 Specific imagery scripts, ritual exercises, massage therapy, and guided imagery are examples of CAM therapies available to support this mission. A patient with terminal illness and pain could receive not only medication for pain control, but also hypnosis, music therapy, acupuncture/acupressure, or massage. Toward the end of life, palliative care should generally increase in line with increasing symptoms and other problems.
Fortunately, there is increasing recognition of the importance of high-quality symptomatic care and support near EOL.7 For example, the state of California now requires 12 continuing medical education credits in pain management and EOL care for nearly all physicians.
Efficacy of CAM at End of Life
A comprehensive investigation studying the efficacy of CAM modalities in treating pain, dyspnea, and nausea and vomiting in patients near the EOL evaluated 21 independent analyses of symptomatic adult patients with incurable conditions. Original articles were evaluated following a search through MEDLINE, CancerLIT, AIDSLINE, PsycLIT, CINAHL, and Social Work Abstracts databases.8 Eleven were randomized controlled trials, two were non-randomized controlled trials, and eight were case series. The investigators concluded that acupuncture, transcutaneous electrical nerve stimulation, supportive group therapy, self-hypnosis, and massage therapy may provide pain relief for those with cancer and people in the process of dying. Data also suggest that relaxation/imagery can improve oral mucositis pain, and that patients with severe chronic obstructive pulmonary disease may benefit from the use of acupuncture, acupressure, and muscle relaxation with breathing retraining to relieve dyspnea.
Pain Management and End-of-Life Care
Pain at the EOL is usually treatable, but many dying patients are under-treated and die in unnecessary pain. The most important factor in EOL care is for practitioners to make pain control a matter of paramount importance.9 Institutional standards for pain management often address only the physical aspects of pain. Effective pain management requires assessment and interventions that address the multidimensional nature of pain, suffering, and quality of life.10,11
What is still lacking are evidence-based data indicating which CAM therapies work best and why. To date, most articles on CAM for EOL issues are surveys, opinions, or anecdotal accounts. There is a critical need for more investigation in this area.
Hypnosis or Hypnotherapy
Hypnosis or hypnotherapy is one area where there have been some investigations.
One study evaluated the use of hypnotically facilitated medical therapy in the management of intractable pain, nausea, and vomiting in three terminally ill cancer patients.12 The existential principles of death anxiety, isolation, and meaninglessness were addressed with a combination of classic and Ericksonian hypnotherapy techniques. The intractable nature of the presenting physical symptoms was seen as a possible manifestation of the impact of the terminal prognosis. Direct hypnotic suggestions for the management of pain, nausea, and vomiting were avoided. It was hypothesized that, as the existential conflicts associated with the patients’ terminal status resolved, the physiological symptoms would become responsive to medication. After six sessions grounded in the principles of existential psychotherapy, the intractable status of the physical symptomatology remitted, and the patients responded to medical management. Hence, in this small pilot study, hypnotherapy was useful for mediating somatic and psychosomatic symptomatology.
Symptoms relating to psychological distress are even more prevalent than pain and other physical symptoms among those with life-limiting conditions. At one clinical teaching center, a four-stage model helps clinicians develop and implement appropriate hypnotherapeutic treatment for patients with incurable disease.13 The primary focus of the hypnotherapy is to ameliorate pain and dyspnea to restore a level of psychological and physical well-being. Other focuses include assisting patients with psychological adjustment to their incurable and ultimately final state.
One New York hospital uses hypnosis with terminal patients to attain relaxation, overcome insomnia, and achieve pain relief.14 Of particular importance, hypnosis is used to teach the patient to work with relatives, and others close to them, as caregivers in a special relationship and a very important source of relief to the patient.
Music is another CAM therapy that has some documented EOL benefits, but methodologically sound studies are few and far between.
The expression and discussion of feelings of loss and grief can be very difficult for terminally ill patients, yet it is believed that by expressing emotions patients experience a more relaxed and comfortable state. Case examples of three in-patient palliative care clients at a Canadian geriatric care center have been cited.15 Techniques were used to assist clients to express their thoughts and feelings using music therapy. The goals set for these patients were to decrease depressive symptoms and social isolation, increase communication and self-expression, stimulate reminiscence and life review, and enhance relaxation. All three subjects were successful in reaching their individual goals.
An Australian research team investigated the utility of music therapy in a cancer hospital over a three-month period.16 Criterion sampling was used to elicit interpretations from five sources: 128 patients who participated, 27 patients who overheard or witnessed music therapy, 41 visitors, 61 staff, and the music therapist-researcher. Fifty-seven percent of the patients who participated had advanced or end-stage cancer. The music therapist’s interpretations were recorded in a clinical journal and the respondents’ interpretations were written on anonymous open-ended questionnaires. Thematic and content analyses were performed on the five groups of data with the support of qualitative data management software. Findings from the five data groups were contrasted and compared. Respondents reported that affective, contemplative, and imagined moments during music therapy affirmed their "aliveness," resonating with an expanded consciousness.
A more rigorous U.S. study was done to evaluate the effects of music therapy on quality of life, length of life in care, physical status, and relationship of death occurrence to the final music therapy interventions of hospice patients diagnosed with terminal cancer.17 Subjects were adults with terminal cancer who were living in their homes and receiving hospice care. A total of 80 subjects participated in the study and were randomly assigned to one of two groups: experimental (routine hospice services and clinical music therapy) and control (routine hospice services only). Groups were matched on the basis of gender and age. Quality of life was measured by the Hospice Quality of Life Index-Revised (HQOLI-R), a self-report measure given at every visit. Functional status of the subjects was assessed by the hospice nurse during every visit using the Palliative Performance Scale. All subjects received at least two visits and quality-of-life and physical status assessments. Repeated-measures ANOVA revealed a significant difference between groups on self-reported quality-of-life scores for visits one and two. Quality of life was higher for those subjects receiving music therapy, and their quality of life increased over time as they received more music therapy sessions. Subjects in the control group, however, experienced a lower quality of life than those in the experimental group, and their quality of life decreased over time. There were no significant differences in results by age or gender of subjects. Also, there were no significant differences between groups on physical functioning, length of life, or time of death in relation to the last scheduled visit by the music therapist or counselor.
A Chinese study observed the clinical effects of music therapy while treating patients with cancer.18 Music therapy combined with antitumor drugs, including chemotherapy and Chinese drugs, was given to 162 cancer patients to observe the change in self-rating depression scale (SDS), self-rating anxiety scale (SAS), Minnesota Multiphasic Personality Inventory (MMPI), Hamilton Rating Scale for Depression (HAMD), and T lymphocyte subsets and NK cell antitumor activity. Forty-six patients not receiving music therapy were used as the control group. Results of the scale marks of SDS and SAS in the experimental group after treatment were significantly lower than that of the control group (P < 0.05, P < 0.01). After treatment, the average values of MMPI on falseness, hypochondriasis, and depression in the treated group were all improved (P < 0.01 or P < 0.05), but in the control group significant difference only showed for hypochondriasis (P < 0.05). HAMD in the treated group revealed some improvement in insomnia, early awakening, daily work and interest, systemic symptoms, and hypochondriasis (P < 0.05), and significant improvement in depression, difficulty in falling asleep, psychiatric anxiety, and somatic anxiety (P < 0.01). In the control group, only work interest and hypochondriasis had some improvement (P < 0.05). Percent CD8 was reduced in both groups after treatment (P < 0.01), but in the treated group CD3, CD4, and CD4/CD8 ratio were not significantly changed after treatment (P > 0.05), while in the control group they decreased (P < 0.05). NK cell activity in the treated group before and after treatment was not significantly lowered (P > 0.05), while in the control group there was a significant lowering after treatment (P < 0.05). The researchers concluded that music therapy could regulate the emotions of cancer patients, optimize emotional affect, improve somatic symptoms, enhance immune function, and raise the self-regulating power in the body.
A 2003 U.S. nursing study tested the hypotheses that the effects of a music intervention are greater than those of simple distraction, and that either intervention is better at controlling procedural pain and anxiety than treatment as usual.19 The randomized, controlled experiment in a Midwestern comprehensive cancer center studied 58 people with cancer having noxious medical procedures, such as tissue biopsy or port placement. Participants completed measures of pain and anxiety before and after their medical procedures and provided a rating of perceived control over pain and anxiety after the procedure. Outcomes achieved with music did not differ from those achieved with simple distraction. Moreover, outcomes achieved under treatment as usual were not significantly different from those obtained with music or distraction interventions. Some patients found that the music interventions were bothersome and reported that they wanted to attend to the activities of the surgeon and the medical procedure itself. The researcher concluded that the effects of music, distraction, and treatment as usual are equivalent. In addition, individual patient preference must be honored. This study suggests that health care providers must be sensitive to the various likes and dislikes of patients regarding music styles, and that some people may not like or respond to music at all.
[Part 2 of this series, examining the roles of acupuncture and massage in end-of-life care, will appear in the March issue of Alternative Medicine Alert.]
Dr. Keegan is Director, Holistic Nursing Consultants, Port Angeles, WA.
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