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There is nothing more discouraging than for a patient to be given a specific diagnosis, then to be told that there is nothing that can be done. Physicians are equally disheartened to see exponential progress being made in the understanding of the pathophysiology of a complex disorder but few direct benefits resulting for their patients. Over the past 5 years, molecular genetic research has completely revolutionized the way in which the progressive cerebellar ataxias are classified and diagnosed, but it has yet to produce effective gene-based, neuroprotective, or neurorestorative therapies. The treatment of cerebellar ataxia remains primarily a neurorehabilitation challenge, employing physical, occupational, speech, and swallowing therapy; adaptive equipment; driver safety training; and nutritional counseling. Modest additional gains are seen with the use of medications that can improve imbalance, incoordination, or dysarthria (amantadine, buspirone, acetazolamide); cerebellar tremor (clonazepam, propranolol); and cerebellar or central vestibular nystagmus (gabapentin, baclofen, clonazepam). Many of the progressive cerebellar syndromes have associated features involving other neurologic systems (eg, spasticity, dystonia or rigidity, resting or rubral tremor, chorea, motor unit weakness or fatigue, autonomic dysfunction, peripheral or posterior column sensory loss, neuropathic pain or cramping, double vision, vision and hearing loss, dementia, and bowel, bladder, and sexual dysfunction), which can impede the treatment of the ataxic symptoms or can worsen with the use of certain drugs. Treatment of the associated features themselves may in turn worsen the ataxia either directly (as side effects of medication) or indirectly (eg, relaxation of lower limb spasticity that was acting as a stabilizer for an ataxic gait). Secondary complications of progressive ataxia can include deconditioning or immobility, weight loss or gain, skin breakdown, recurrent pulmonary and urinary tract infections, aspiration, occult respiratory failure, and obstructive sleep apnea, all of which can be life threatening. Depression in the patient and family members is common. Although no cures exist for most of the causes of cerebellar ataxia and there are as yet no proven ways to protect neurons from premature cell death or to restore neuronal populations that have been lost, symptomatic treatment can greatly improve the quality of life of these patients and prevent complications that could hasten death. Supportive interventions should always be offered-- education about the disease itself, genetic counseling, individual and family counseling, referral to support groups and advocacy groups, and guidance to online resources. Misinformation, fear, depression, hopelessness, isolation, and financial and interpersonal stress can often cause more harm to the patient and caregiver than the ataxia itself.
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PMID:Cerebellar Ataxia. 1109 49

There has been much interest in the psychosocial issues faced by breast cancer patients because of the high prevalence of the disease and the severe psychological impact of the cancer itself, as well as its treatment. The objective of our study was to investigate the determinants of psychiatric morbidity among postoperative ambulatory breast cancer patients. The variables examined included the patients' biomedical characteristics, demographic characteristics, current concerns, coping responses and social support factors. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the Mental Adjustment to Cancer scale (MAC scale), and information pertaining to demographic variables, current concerns and social support factors was obtained by a specially designed questionnaire. Available data were obtained from 148 randomly selected postoperative ambulatory breast cancer patients. The prevalence of psychiatric morbidity (including clinical anxiety and depression) evaluated by using the HADS cut-off point was 23%. The results of univariate analyses indicated that pain, dyspnea, having children with health problems, various other concerns (about children, other family members, the patients' own health and future treatment) and poor coping responses (low fighting spirit, high anxious preoccupation, high fatalism and high helplessness/hopelessness) were significant determinants of the patients' psychiatric morbidity. Additionally, in the logistic regression analysis, having children with health problems and having a low fighting spirit and a high helplessness/hopelessness were final significant determinants. Postoperative ambulatory breast cancer patients with these problems should be given careful attention, and psychosocial intervention may be beneficial for them.
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PMID:Biomedical and psychosocial determinants of psychiatric morbidity among postoperative ambulatory breast cancer patients. 1133 41

We are used to speak about the organic pain origin. Meanwhile in actual and old definitions of pain the other determinants, besides the organic one, are included. They are changing the pain threshold and the pain tolerance. Dame Cicely Saunders, who started the modern hospice movement of care for those in advanced stage of disease, describes the concept of "total pain" as involving organic, emotional, spiritual and social determinants. Such pain concept fits into the classical division of pain pathogenesis. The basic forms are: nociceptive, neuropathic and according to the old nomenclature psychogenic. The first one is defense reaction, the second one is due to pathology. The third one is very complex and this article is dealing with it. The patient's emotional reactions, especially the fear and anxiousness producing tension increase the pain. Therefore, different kinds of relaxation or attention distraction can help a lot in relieving the pain. Spiritual pain can be a very difficult symptom increasing the physical pain significantly. Everybody has spiritual needs and they are independent of religious orientation. The experience of life's and suffering's senslessness, personal valulessness and situational hopelessness lowers significantly pain tolerance. The selfconfidence, the confidence in other persons, in somebody over us has the opposite effect. And finally the pain is often easier to cope with in the presence of a friendly person. To be able to complain and to describe one's own fears, especially in connection with the significance of the actual pain, helps a lot. The support of the wider community also helps. We ought to approach the patient holistically, that means also observe the person, the human being suffering, hoping and wishing to be heard, and not to be left alone.
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PMID:[Psychological, emotional, spiritual and social aspects of pain]. 1137 99

Cancer patients may commit suicide at any stage of the disease and many risk factors of suicide have been described in the literature. To identify the possible vulnerability factors of suicide in five terminal cancer patients who committed suicide while they were cared for at home by well-trained palliative care teams, a psychological autopsy study was carried out by reviewing their medical records; their report of symptoms at the time of care; and with the caregivers', doctors', and nurses' recollection of events by means of a structured interview prepared ad hoc. We collected data regarding the physical, emotional, and social suffering of the patients, their personality profile, and their feelings with respect to the illness and disability. The interviews lasted for a mean of two hours and were performed from 2-8 years after the suicide events by the social worker at the Rehabilitation and Palliative Care Division. The interviews took place between June 1996 and January 1998. All the patients showed great concern about the lack of autonomy and independence, refused dependence on others and had fear/worry of losing their autonomy. Four patients presented functional and physical impairments, uncontrolled pain, awareness of being in the terminal stage, and mild to moderate depression. They had a feeling of hopelessness consequent to their clinical conditions, fear of suffering, and feeling of being a burden on others. They had a strong character and managerial professions. They had isolated themselves from others and they had previously talked about suicide. Before committing suicide, three patients had adverse physical/emotional consequences to the oncological treatments-they showed aggressiveness towards their family and one towards the home care physician. Multiple vulnerability factors were present simultaneously in all patients. However, the loss of, and the fear of losing, autonomy and their independence and of being a burden on others were the most relevant. The identification of a cancer patient at risk of committing suicide forms the first step for the prevention of and the setting up of adequate psychosocial rehabilitation of these patients whenever possible.
J Pain Symptom Manage 2001 Jul
PMID:Characteristics of terminal cancer patients who committed suicide during a home palliative care program. 1151 96

Previous reports have demonstrated that breast cancer patients felt that news of their recurrence was more upsetting than their initial diagnosis. However, no studies have examined the factors that are correlated with mental adjustment in breast cancer patients who experienced recurrence. The authors investigated factors that are correlated with mental adjustment styles of fighting spirit or helplessness/hopelessness in women with breast cancer with a first recurrence. Fifty-five participants were interviewed and completed the Mental Adjustment to Cancer scale. Factors that correlated significantly with fighting spirit were performance status and history of major depression, while factors that correlated significantly with helplessness/hopelessness were age, pain, and history of major depression. These findings suggest that it is necessary to provide intervention for first recurrent breast cancer patients who have such biomedical factors, as young age, poor performance status, pain, and history of major depression to help them better cope with cancer.
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PMID:Mental adjustment to first recurrence and correlated factors in patients with breast cancer. 1156 71

This article presents four case studies which demonstrate the use of music therapy in assisting palliative care patients and families cope with grief and loss, pain and anxiety, disorientation and dementia, lack of meaning, and hopelessness. Music therapy techniques are illustrated and patient-related goals are defined within the case studies. A review of the literature supports the use of music therapy in palliative care, and a variety of qualitative and quantitative studies are reported in the article.
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PMID:The use of music therapy in meeting the multidimensional needs of hospice patients and families. 1181 56

The present study was designed to explore the extent to which advanced cancer pain is explicable in terms of both physical pain intensity and affect. Most notably, it expanded on previous findings by more clearly elucidating the relationship between several discrete emotional states and the total experience of cancer pain. One hundred and eleven patients with cancer pain attending a Pain and Symptom Control Clinic were studied. Visual Analogue Scales (VASs) were used to quantify overall pain intensity and the accompanying affect. Then, correlations were calculated to evaluate the relationships both between and within these two variables. Overall, the participants rated both the pain intensity and the negative affect associated with that pain as high. Of the examined affective components of pain, frustration and exhaustion were found to be the most significant. In addition, some gender differences were identified in terms of frustration, anger, fear, exhaustion, helplessness, and hopelessness.
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PMID:Sensory and affective dimensions of advanced cancer pain. 1183 90

Current trends in the treatment of oncologically diseased patients are aimed at comprehensive conception and at evaluation of all aspects influencing the health state of the patient including the psychical factors. Behavioral research studies the biological, psychological and social markers. It has brought more effective and more comprehensive therapeutical activities, including psychotherapy, sociotherapy and psychopharmacotherapy. It is sure that malignant tumors, their development and treatment represent a serious psychical stress. It is often connected with pain, severe body complains, and also with lowering or loss of the social position, reduction of social contacts and in serious cases with the threat of death. It can result an increasing dependence, anxiety, phobia and hopelessness. According to experts, the emotional reactions of oncologically diseased are similar to reactions of patients suffering from other chronic diseases.
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PMID:[Depression and painful states and their treatment in oncology patients]. 1192 69

A request for euthanasia (RFE) in the terminally ill raises concerns that physical and/or mental suffering remain unaddressed and thus mandates a critical appraisal of the physical and psychosocial aspects of the individual concerned. An alert datasheet (AD) is completed at the weekly Palliative Care Service (PCS) meeting as a measure of self-audit and deals with issues considered to be of importance in ensuring high-quality patient care, one of which is a RFE. The ADs for the year 2000 were examined, and where a RFE was made, the contributing factors as documented on the forms together with demographic data, the case synopsis and patient-rated main three problems/issues were appraised. Among 490 patients referred to the service, there were 6 RFE (1.6%) recorded. These were made by 1 female (age 44) and 5 male (age range 58-78 years) patients. Four of these patients had a cancer diagnosis (all had metastatic disease). Median survival from first contact with the PCS was 13 days (range 4-29). The contributing factors identified were: uncontrolled symptoms (2/6 - severe constipation in both), depression (1/6), issues of burden/dependency (6/6), lack of autonomy/control (4/6), sense of hopelessness (3/6) and social isolation (4/6). The patient-rated main three problems were: (i) physical symptoms (5/6), specifically pain (2/6), shortness of breath (2/6), fatigue (1/6) and nausea (1/6), and (ii) psychosocial issues (4/6). A RFE was seen to be a multifactorial entity (issues of burden/dependency being universal) and merits a focused appraisal in order to adequately address potentially unrecognised issues that contribute to suffering. The short median survival from the time of referral to the service suggests that (i) RFEs are made late in the trajectory of the illness and (ii) these patients are being referred late in the course of their illness - thus limiting the window in which these issues can be addressed.
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PMID:Requests for euthanasia made to a tertiary referral teaching hospital in Sydney, Australia in the year 2000. 1202 30

Patients' and caregivers' fear of addiction to and concern about side effects of morphine have been found to be among the major barriers to adequate pain relief in cancer patients. In contrast, the transdermal administration of opioids by means of fentanyl patches does not seem to evoke such fears. In a qualitative study, 60 patients in our outpatient pain clinic recorded up to five associations with a list of diseases, drugs and administration routes. Cancer and AIDS were associated most often with death, followed by suffering, anxiety and hopelessness. Migraine was associated predominantly with pain and other physical symptoms. Aspirin was associated less with pain in general than with headache and, sometimes, specifically with alcohol or hangover. Morphine was associated predominantly with pain and pain relief, but fears of intoxication, abuse and addiction and concerns about side effects were frequently named. Major differences were evident from the associations with the different routes of administration. The word 'pill' was mostly associated with contraception. Associations with 'tablets' were more pharmacological in nature, and side effects were frequently named. Patches were associated with wounds, cuts, bruises, and blisters and with protection. Some associations with patches were related to comfort. Injections and infusions were associated with physicians or the hospital environment. In conclusion, patients expressed major differences in their perceptions of the different drugs and routes of administration. The results may give a first hint that minor cultural differences even between western European countries may lead to major differences in prescribing habits and treatment regimens.
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PMID:Patients' associations with regard to analgesic drugs and their forms for application -- a pilot study. 1235 27


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