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PubMedDate not supplied

Paediatric palliative medicine: a unique challenge.

For more than thirty years, adults suffering from life-threatening or terminal conditions have been able to access specialist skills in palliative medicine. It has taken much longer for children to start to have access to the same expertise. Paediatric palliative medicine adopts a robust and rational approach to symptom control, based on a thorough understanding of pathophysiology and therapeutics. At the same time, it recognises that physical issues are only one aspect of a child's quality of life and, by adopting a multi-dimensional approach, aims to address psychosocial and spiritual or existential concerns.

Child↗
PubMed2005

"... As we forgive those who trespass against us...": theological reflections on sin and guilt in the hospital environment.

In general parlance the term sin has lost its existential meaning. Originally a Jewish-Christian term within a purely religious context, referring to a wrongdoing with regard to God, sin has slowly become reduced to guilt in the course of the secularization process. Guilt refers to a wrongdoing, especially with regard to fellow human beings. It also refers to errors of judgement with what can be tragic consequences. These errors can occur whenever human beings are called upon to act, including the hospital environment. A Christian hospital has to address the issue of how to deal not only with guilt-ridden misdemeanors, but also with wrongdoing unto God, which overshadows every instance of guilt-ridden human behavior. Here, as in every parish, the Church Service is the place to acknowledge sin, confess sin, and forgive sin, beyond the boundaries of the parish itself.

Bioethical Issues↗
PubMed2005

Deafhood: a concept stressing possibilities, not deficits1.

Born-deaf, sign-language-using people have for the past two centuries been placed within a succession of externally constructed models, notably the traditional "medical" or pathological model. This perceives them primarily as biologically deficient beings in need of cures or charity in order to be successfully assimilated into society. This paper proposes that the concept of colonialism is the one that most appropriately describes the "existential" reality of deaf communities, and offers instead a deaf-constructed model. Utilizing recent confirmation of the existence of bona-fide feaf cultures, it highlights the extent to which these communities have resisted such models, maintaining their own beliefs concerning their validity and quality of their existence, and what they offer to non-deaf societies. This "vulnerability as strength" is manifested through the concept of deafhood, which is presented as the first move towards a formal narrative of decolonizing and liberatory possibilities.

Adaptation, Psychological↗
PubMed2000

Spiritual well-being of the individual with amyotrophic lateral sclerosis.

BACKGROUND: A study was conducted to: (1) establish the feasibility and reliability of the Spiritual Well-Being Scale (SWBS) and its religious (RWB) and existential well-being (EWB) subscales in a sample of individuals with ALS; (2) describe the spiritual and religious practices, and spiritual well-being in these individuals; and (3) examine the relationship between spiritual well-being and quality of life. METHOD: A random sample of 60 individuals completed the SWBS at the beginning and end of an ALS clinic visit. Subjects were classified into early, middle or late stage of ALS, using vital capacity and total ALS Functional Rating Scale scores. A subsample completed the Sickness Impact Profile (SIP). RESULTS: The SWBS and its RWB and EWB subscales were found to have high internal consistency and test-retest reliability. There were no statistically significant differences in SWB, RWB or EWB scores among the three stages of ALS. RWB scores were significantly higher than EWB scores overall and within the middle and late stages. Strong negative correlations were found between physical and psychosocial dimension SIP subscores and RWB scores, suggesting that religious well-being may impact quality of life, or vice versa.

Attitude to Health↗
PubMed2004

Living with cochlear implants: experiences of 17 adult patients in Sweden.

The aim of this grounded theory study was to gain a deeper understanding of what it means to profoundly deaf adults to undergo cochlear implantation and their experience of living with it daily. The aim of grounded theory is theorizing, i.e. constructing from data an explanatory scheme that systematically integrates various concepts and their relationships. The study group consisted of 10 women and seven men (age 29-78 years; mean age 56.5 years), who had had their cochlear implant (CI) for between 1 and 12 years (mean 4.1 years). Open taped interviews were carried out and analysed. The core category, coming back to life, defines a psychological process basic to existence, elucidating the existential value of hearing, including perceived harmony in life and becoming a part of the living world as important dimensions. This core concept is related to four additional emerging categories in a temporal order. Preventing disappointment concerns the decision to undergo the operation governed by the conception of having nothing to lose combined with low expectations of successful outcomes. Waiting in silence relates to experiences during the postoperative period such as sensations from the head and uncertainty about the outcome of surgery. The 'switch-on' was experienced as a significant revelation and the emotionally loaded starting point for their coming back to life. Retraining the brain concerns the lengthy audiovisual learning process. finally resulting in 'a car sounding like a car'. Strengthening of self-worth concerns psychosocial outcomes of cochlear implantation, in terms of less dependency and increased social participation. CIs provide a substantial improvement in the quality of life, as identified in the emerging generic process of coming back to life, fundamental for psychological existence.

Adult↗
PubMed2005

A burden to others: a common source of distress for the terminally ill.

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.

Aged↗
PubMed2004

Spiritually augmented cognitive behavioural therapy.

OBJECTIVE: To describe spiritually augmented cognitive behaviour therapy (SACBT) and its applications. METHODS: The background for the need to incorporate spirituality into therapy is considered, and SACBT as a therapy for sustaining mental health and functional recovery is described. Cognitive and behavioural components are considered, including the use of existential techniques in discovering meaning. The use of meditation and the validation and incorporation of the appropriate belief system of patients into their treatment are described. RESULTS: Controlled studies have demonstrated 16-session SACBT to be beneficial in extinguishing hopelessness and despair, improving treatment collaboration, reducing relapse rates and enhancing functional recovery. CONCLUSION: SACBT can aid therapists in providing "whole person" care and achieving better global outcomes for patients with psychological illness.

Adaptation, Psychological↗
PubMed2004

Psychiatric disorder in women with early stage and advanced breast cancer: a comparative analysis.

OBJECTIVE: To assess psychosocial morbidity in women with breast cancer and to compare the differential rates between women with early stage and advanced disease. METHOD: In this report, 303 women with early stage breast cancer, psychiatrically assessed at baseline (as part of a study of cognitive-existential group therapy during adjuvant chemotherapy), are compared with 200 women with advanced breast cancer (similarly assessed in a trial of supportive-expressive group therapy). A structured psychiatric interview plus self-report measures were used to assess psychiatric morbidity, quality of life and cognitive attitude to cancer. RESULTS: The early stage patients, whose mean age was 46 years, were on average 3 months post-surgery and had an overall prevalence of DSM-IV psychiatric diagnosis of 45%. The metastatic patients, whose mean age was 51 years, were on average 63 months post-primary diagnosis and had an overall prevalence of DSM-IV diagnosis of 42%; the difference between the two rates was not statistically significant. Of women with early stage breast cancer, 36.7% had mood disorders, 9.6% suffering from major depression and 27.1% from minor depression. In the metastatic sample 31% had mood disorders, 6.5% having major depression and 24.5% with minor depression. Anxiety disorders were present in 8.6% of the early stage group and 6% of women with advanced disease. Fatigue, a past history of depression, and cognitive attitudes of helplessness, hopelessness or resignation were significantly associated with depression in both groups. The women from the metastatic sample were significantly less distressed by hair loss but more dissatisfied with body image, and had higher rates of lymphoedema and hot flushes than the early stage women. CONCLUSIONS: The rates of psychosocial distress are high, and similar, across patients with both early and advanced stage breast cancer, although the illness related causes of distress are different. These data present a challenge to clinical services to provide a comprehensive range of support services to ameliorate this distress.

Adjustment Disorders↗
PubMed2004

Medicalizing meaning: demoralization syndrome and the desire to die.

OBJECTIVE: To critically analyse the proposed new psychiatric condition, demoralization syndrome, and the implications drawn by its proponents for the clinical-ethical status of requests by terminally ill patients for assistance to die. METHOD: The diagnostic features of demoralization syndrome, a proposed new psychiatric disorder, recognizable particularly in palliative care settings, are summarized. The consequences of proposed therapeutic interventions are described, one of which is relief of the desperation which motivates some demoralized patients to consider ending their lives and to seek assistance in dying. The connections between the proposed condition and the desire to die are analysed in the context of the continuing tensions surrounding the ontological status and sociopolitical implications of psychiatric categories and the pervasive medicalization of modern life. RESULTS: The analysis suggests that by medicalizing existential cognitions at the end of life, the proposed diagnostic category also normalizes a particular moral view concerning assistance in dying. CONCLUSIONS: While further research into the issues described in this provisional syndrome may benefit some patients, the categorization of demoralization as a medical diagnosis is a questionable extension of psychiatry's influence, which could serve particular social, political and cultural views concerning the end of life.

Antidepressive Agents↗
PubMedDate not supplied

Identity, cognitive structure, and long-term tranquillizer use: a multidimensional approach.

The article discusses different theoretical perspectives that are relevant in analysing long-term tranquillizer use. The theories mentioned are, e.g., behavioral theory models, cognitive models, humanistic and existential models, transpersonal identity models, psychodynamic reasoning, sociological and anthropological perspectives. A multidimensional model focusing on the connection between identity structure and long-term tranquillizer use is presented. The article argues for the use of mixed methodological strategies, e.g., quantitative and qualitative methods. The implications of the 'actor-spectator paradox" for the analysis of data are also discussed in some detail.

Anti-Anxiety Agents↗
PubMed2000

Health-related quality-of-life measurements in HIV/AIDS care.

The measurement of health-related quality of life (HRQL) for patients infected with the human immunodeficiency virus (HIV) is still in evolution. With the development of antiretroviral therapies and prophylaxis treatments for opportunistic infections, for many individuals HIV infection has become a chronic illness. Very few studies have been undertaken toward understanding the patient's experience of integrating HIV infection as a chronic illness into one's life and the impact of therapy on the quality of the patient's life. To stimulate research into this area, a review of existing studies, with an emphasis on different types of HRQL measurements was undertaken to identify a comprehensive set of measures that allow one to examine the more diffuse impact of the illness on activities of daily living within the social, physical, mental, and existential domains.

Activities of Daily Living↗
PubMed2001

Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool.

End-of-life care has benefited from the recognition that multiple dimensions exist to patient care needs. However, well-designed clinical tools to evaluate these multiple dimensions are few. Such tools are available for evaluations of pain and other specific areas, but clinicians need a sensitive and reliable set of bedside questions to assess and screen individual patients' overall care. We set out to develop a practical tool that we called the Needs at the End-of-Life Screening Tool (NEST). As part of a larger study, we conducted a series of focus groups and interviews with patients, family caregivers, and professionals followed by a survey of a nationally representative sample of 988 patients with a terminal diagnosis. From the former we derived a frame-work with a full range of identified dimensions that are important in end-of-life care. Dimensions were empirically tested using factor analysis of the patients' survey responses. We developed criteria for selecting questions within the dimensions. Modifications were made to the questions to suit the clinical context. Finally, to assist in their ready use at the bedside, we assigned questions to four core themes of palliative care. Thirteen questions resulted and were assigned themes corresponding, for mnemonic purposes, to each letter of NEST: for Needs (social), for Existential matters, for Symptoms and for Therapeutic matters. NEST is the first data-driven, comprehensive tool designed from an empirically validated framework and tested survey questions for clinical use in end-of-life care. Evaluation of its performance in another population is needed to complete NEST's fuller evaluation.

Attitude to Death↗
PubMed2003

End-of-life caregiving: what helps family caregivers cope?

Patient care needs and patient quality-of-life (QOL) deficits can be significant stressors for family caregivers. Often, greater caregiving demands and poorer patient QOL are associated with greater caregiver strain. However, caregiver coping behavior can attenuate the effect of caregiving stressors on caregiver strain. This study examined the relationships among caregiving stressors, coping, and caregiver strain in a sample of 31 family caregivers and their terminally ill loved ones enrolled in home hospice programs. Caregiving stressors included patient activity of daily living (ADL) needs and dimensions of patient QOL. Coping was measured with the Family Crisis Personal Evaluation Scale (F-COPES), which has five coping scales: acquiring social support, reframing, seeking spiritual support, passive appraisal, and mobilizing the family to acquire and accept help. Caregiver strain was significantly correlated with patient ADL needs (r = 0.51), patient psychological distress (r = 0.42), and patient existential QOL (r = -0.65). Regression equations indicated that reframing coping lessened caregiver strain. Caregivers who accepted their loved one's illness, redefined illness-related problems in a more manageable way, and felt capable of solving illness-related problems had less caregiver strain than caregivers who used less of a reframing coping style.

Activities of Daily Living↗
PubMed1998

Understanding "post-AIDS survivor syndrome": a record of personal experiences.

With the introduction of protease inhibitors and combination therapies, and the dramatic health improvements related to these drugs, psychologists expected to see dramatic improvement in HIV-infected persons with regard to their feelings of hopelessness and depression. Several months after the Vancouver conference in 1996, a curious phenomenon was noted. The clinical manifestations included an initial phase of excitement and hope. Then, as patients began to deal with the psychological changes involved in planning a future rather than a funeral, many began (unconsciously or not) to become noncompliant with their medications. In Dallas, physicians validated this phenomenon, some reporting up to 75% non-compliance rates. This article will address the change from a terminally ill person to one that is chronically ill, and the psychological, social, and existential changes that occur during this shift in identity. It will specifically focus on the fears involved with losing support, disability income, having to possibly reenter the work force (after having not worked and losing job skills), the special issues of women with HIV and, finally, the decision that women are making to get pregnant, expecting a normal life span, and, (with the use of multiple drug therapies during pregnancy) having a healthy, noninfected child.

Acquired Immunodeficiency Syndrome↗
PubMed2006

Spiritual pain among patients with advanced cancer in palliative care.

BACKGROUND: The large body of empirical research suggesting that patients' spiritual and existential experiences influence the disease process has raised the need for health care professionals to understand the complexity of patients' spiritual pain and distress. OBJECTIVE: The current study explores the multidimensional nature of spiritual pain, in patients with end-stage cancer, in relation to physical pain, symptom severity, and emotional distress. DESIGN/MEASUREMENTS: The study combines a quantitative evaluation of participants' intensity of spiritual pain, physical pain, depression, and intensity of illness, with a qualitative focus on the nature of patients' spiritual pain and the kinds of interventions patients believed would ameliorate their spiritual pain. SETTING/SUBJECTS: Fifty-seven patients with advanced stage cancer in a palliative care hospital were interviewed by chaplains. RESULTS: Overall, 96% of the patients reported experiencing spiritual pain, but they expressed it in different ways: (1) as an intrapsychic conflict, (2) as interpersonal loss or conflict, or (3) in relation to the divine. Intensity of spiritual pain was correlated with depression (r = 0.43, p < 0.001), but not physical pain or severity of illness. The intensity of spiritual pain did not vary by age, gender, disease course or religious affiliation. CONCLUSIONS: Given both the universality of spiritual pain and the multifaceted nature of pain, we propose that when patients report the experience of pain, more consideration be given to the complexity of the phenomena and that spiritual pain be considered a contributing factor. The authors maintain that spiritual pain left unaddressed both impedes recovery and contributes to the overall suffering of the patient.

Adult↗
PubMed2006

Suffering at the end of life in the setting of low physical symptom distress.

BACKGROUND: Alleviation of suffering is a fundamental goal of medicine, especially at the end of life. Although physical distress is a component of suffering, other determinants likely play a role. This study attempted to elucidate these other components in an effort to understand the nature of suffering better. METHODS: Prospective cohort study conducted in the Population-based Palliative Care Research Network (PoPCRN) among English-speaking adults. Data were collected at hospice admission and at frequent intervals until death or discharge. This paper presents patient-reported data collected at the first available assessment after admission, using the Condensed Memorial Symptom Assessment Scale (MSAS; 0=not distressing, 4=very distressing), the McGill Quality of Life Questionnaire (MQOL; 0=worst QOL, 10=best QOL) and 2 suffering scales, overall suffering and suffering caused by physical symptoms (0=not suffering, 10=extreme suffering). The study population (n=48) is limited to those with physical symptoms less than "somewhat" distressing on the MSAS-PHYS. Respondents were divided into two groups: no-mild overall suffering (0-3) and moderate-severe overall suffering (4-10) and compared based on demographics, MQOL scores, MSAS-PSYCH scores and suffering caused by physical symptoms. RESULTS: Mean age 70 years (range, 33-91), mean Karnofsky score 46, 46% married, 54% male, 71% cancer, 93% non-Hispanic white. Compared to patients reporting no-mild overall suffering, patients reporting moderate-severe overall suffering were more likely to have a diagnosis other than cancer (83% vs. 57%, p=0.05), be younger (65 vs. 75 years, p=0.02) and have lower scores on the MQOL-psychological subscale (6.4 vs. 8.0, p=0.02) and overall QOL scale (6.2 vs. 7.2, p=0.04). No significant differences were noted with respect to gender, marital status, MSAS-PSYCH, or MQOL existential and support subscales. Study patients reporting worse overall suffering also reported worse suffering caused by physical symptoms (6.3 vs. 2.1, p<0.0001). There was little association between the MSAS-PHYS score and either overall suffering (correlation coefficient=0.18, p=0.21) or suffering resulting from physical symptoms (correlation coefficient=0.22, p=0.13). CONCLUSION: Patients reporting lack of distress resulting from physical symptoms did not necessarily indicate lack of suffering because of physical symptoms or lack of overall suffering. Factors other than physical symptom distress, such as diagnosis, age, and QOL appear to affect the perception of suffering. In order to better address suffering at the end of life, care must be taken to understand differences between physical symptom distress, suffering caused by physical symptoms and overall suffering.

Adult↗
PubMed2006

Quality of life of patients with advanced cancer and acquired immune deficiency syndrome and their family caregivers.

BACKGROUND: Although definitions of palliative care include quality of life as a central concern, little research has been published about both the quality of life of patients with advanced illness and their family members, and particularly the changes in their quality of life over time. OBJECTIVES: The aims of this prospective longitudinal pilot study were to: (1) establish the reliability of multidimensional quality of life instruments based on patients with acquired immune deficiency syndrome (AIDS) and patients with cancer and caregivers; (2) identify differences in quality of life between patients with advanced AIDS and cancer, and their family caregivers with consideration of mortality, attrition, and compliance rates; and (3) examine differences in demographic variables and their potential confounding effect when measuring quality of life. METHODS: The sample included 101 patients with advanced illness (63 patients with advanced AIDS and 38 with advanced cancer) and 81 family caregivers (43 caregivers for patients with AIDS and 38 caregivers for patients with cancer). Data collection involved the monthly completion of the McGill Quality of Life Questionnaire (MQOL) for patients, and the Quality of Life Scale (QLS) for family caregivers. RESULTS: Reliability of the MQOL and QLS were established for patients with AIDS and patients with cancer and caregivers. Based on the MQOL, patients with advanced AIDS reported a lower total quality of life, and lower psychological quality of life, and a higher physical quality of life compared to patients with advanced cancer. There were no significant differences between patient groups on the one-item physical well-being subscale, or the existential well-being, and support subscales. Based on the QLS, AIDS caregivers reported greater overall quality of life, greater psychological well-being, and greater spiritual well-be- ing than cancer caregivers. There were no significant differences between AIDS and cancer caregivers with respect to physical or social well-being. From baseline entry into the study to third month of participation, there were no significant changes in total quality of life scores for patient or caregiver groups, although trends indicated a moderately high total quality of life over time for all patient and caregiver groups. Fourteen of 63 (22%) patients with AIDS patients died, while 19 of 38 (50%) patients with advanced cancer died after enrollment. Forty-six of 63 (73%) patients with advanced AIDS withdrew for various reasons other than death at some point during the 12 month time frame of the study, while 15 of 38 (39%) patients with advanced cancer withdrew. There were significant differences on all demographic variables for patients with advanced cancer and AIDS. Only religious affiliation was significantly related to quality of life for patients with AIDS, while gender was the only variable associated with quality of life for patients with cancer. There were significant differences on all demographic variables between caregivers with the exception of gender and living arrangements. Only the relationship between patients and caregivers and marital status were significantly associated with quality of life for cancer caregivers. CONCLUSIONS: In palliative care research, the challenge is to design studies that will capture changes in the domains of quality of life over time, yet will minimize participant burden and subsequent attrition rates. By measuring quality of life as an outcome variable in palliative care, health professionals can identify changes in the domains of quality of life over time for various patient populations and their family caregivers, and respond with appropriate interventions, which promote or maintain their quality of life even as death approaches.

Acquired Immunodeficiency Syndrome↗
PubMed2005

Pain suppresses spontaneous brain rhythms.

The neuronal activity of the resting human brain is dominated by spontaneous oscillatory activity of primary visual, somatosensory and motor areas. These spontaneous brain rhythms are related to the functional state of a system. A higher amplitude of oscillatory activity is thought to reflect an idling state, whereas a lower amplitude is associated with activation and higher excitability of the specific system. Here, we used magnetoencephalography to investigate the effects of pain on spontaneous brain rhythms. Our results show that a focally applied brief painful stimulus globally suppresses spontaneous oscillations in somatosensory, motor and visual areas. This global suppression contrasts with the regionally specific suppressions of other modalities and shows that pain induces a widespread change in cortical function and excitability. This global change in excitability may reflect the alerting function of pain which opens the gates for processing of and reacting to stimuli of existential relevance.

Adult↗