Atención al duelo en los servicios españoles de cuidados paliativos: estudio comparativo con otros países europeos / Bereavement care in spanish palliative care services: a comparative study with other european countries

Objetivo: El objetivo de este trabajo es describir y comparar el tipo y las características de atención al duelo en Europa y España, así como actualizar e identificar avances en España con el fin de mejorar la atención al duelo. Método: Estudio observacional, descriptivo, prospectivo y comparativo. Realizado a partir de los datos del grupo de trabajo de duelo de la EAPC relativos a España, recogidos mediante un cuestionario que consta de 54 preguntas en 6 secciones: antecedentes, apoyo, personal, acceso y niveles de cuidado, aspectos comunitarios, recursos y modelo de atención. Fue distribuido por correo electrónico a través de la EAPC a 56 asociaciones nacionales de CP. Las comparaciones entre Europa y España se realizaron utilizando la prueba de Chi-cuadrado de Pearson. Resultados: La atención al duelo se ofrece en el 83 % de los 314 servicios que responden en Europa y en el 73 % de 56 servicios en España, con datos similares a estudios anteriores españoles. La mayoría de servicios corresponden a unidades hospitalarias. El tipo de soporte o intervención especializada depende del nivel de atención en ambos grupos. En Europa, el 32 % dispone de directrices o guías nacionales de duelo en su país, en España el 61 % de los servicios, lo que facilita la actuación. Los “instrumentos formales de riesgo” son utilizados solo por una cuarta parte de los servicios. Conclusiones: Este estudio presenta un avance y un reto futuro en la atención al duelo en Europa y España. Los datos han mostrado que la atención al duelo no forma parte de todos los servicios. El número de respuestas a los cuestionarios no ha aumentado ni se han incrementado los servicios en España. Tanto en Europa como en España es necesario seguir potenciando, formalizando e incrementando servicios con atención al duelo, como una parte esencial de los cuidados paliativos. (AU)

Objetive: To describe and compare the type and characteristics of bereavement care in Europe and Spain. To update and identify advances in Spain for improving grief care. Method: An observational, descriptive, prospective and comparative study. Made on data from the EAPC bereavement group relating to Spain, collected through a questionnaire consisting of 54 questions in 6 sections: background; support; personal; access, levels of care; community aspects; resources and care model. It was distributed by online mail via the EAPC to 56 national PC associations. Comparisons between Europe and Spain were made using Pearson’s χ2 test. Results: Bereavement care is offered by 83 % of the 314 responding services in Europe and in 73% of 56 services in Spain, with similar data to previous Spanish studies. Most services correspond to hospital units. The type of support or specialized intervention depends on level of care in both groups. In Europe, 27 % have National Grief Guides in their country, in Spain 61 % of services, which facilitates action. “Formal risk instruments” are used by only a quarter of the services. Conclusions: This study presents an advance and a future challenge in bereavement care in Europe and Spain. Data have shown that bereavement care is not included in all services. The numbers of responses to questionnaires have not increased, nor have services in Spain increased. Both in Europe and in Spain, it is necessary to continue promoting, formalizing and increasing services with attention to grief as an essential part of palliative care services. (AU)

A call to action: an IWG charter for a public health approach to dying, death, and loss.

The current systems of care for dying persons, the people caring for them, and the bereaved operate in ways that frequently lack sufficient sensitivity to their needs. We describe a new model for dying, death, and loss that adopts a public health approach. Specifically, we describe a deliberative process that resulted in a charter for a public health approach to dying, death, and loss. Modeled after the World Health Organization's 1986 Ottawa Charter, our charter includes a call to action. It has the potential to bring about significant change on local, societal, and global levels as exemplified by four projects from three countries. Public health and end-of-life services and organizations need to form partnerships with the community to develop a public health approach to dying, death, and loss. Learning from each other, they will affirm and enhance community beliefs and practices that make death part of life.

Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher's Index of Patient Priorities (SKIPP).

OBJECTIVE: To develop and conduct a preliminary psychometric analysis of a hospice and palliative care patient-reported outcome measure to detect patients' perceptions of change in quality of life (QoL) and issues of concern, and views of service benefit. METHODS: Following pilot testing and cognitive interviewing, St Christopher's Index of Patient Priorities (SKIPP) was administered twice to hospice inpatients and homecare patients. QoL was rated 'now', and retrospectively 'before starting hospice care' or 'at the time of the first interview'. Patients nominated and rated progress with main concerns, rated the difference the service was making, and completed palliative care outcome scale. Patients completed SKIPP again within 24 h to measure test-retest reliability. RESULTS: QoL scores 'now' differed significantly from retrospective scores made at same time: QoL increased with hospice care when patients 'looked back' on previous QoL. Four-fifths reported that their first concern had got 'a little'/ 'much' better since initial service contact: this declined subsequently. Four-fifths at both time points said the hospice had made 'a lot of difference' to them. No significant differences were noted between time points on palliative care outcome scale items. Test-retest analyses were prevented by low numbers. CONCLUSIONS: SKIPP can detect patients' perception of change in QoL and main concerns, and the difference patients think the service has made to them. Its design with current and retrospective components addresses response shift and means it can be used for quality improvement or clinical purposes with only one administration, an advantage in frail populations. It is therefore a useful addition to hospice and palliative care patient-reported outcome measures.

I've had a good life, what's left is a bonus: factor analysis of the Mental Adjustment to Cancer Scale in a palliative care population.

BACKGROUND: The Mental Adjustment to Cancer Scale is an assessment tool commonly used to measure coping in cancer patients, which characterises adaptive coping under the label of 'fighting spirit'. AIM: This study explores adaptation in patients with advanced cancer, by examining the factor structure of the Mental Adjustment to Cancer Scale. Further aims were to examine associations between types of coping and psychological outcomes measured at the same time (time 1) and 4 weeks after referral to palliative care services (time 2). DESIGN: A cross-sectional study with a follow-up assessment 4 weeks later. Factor analysis examined the structure of the Mental Adjustment to Cancer Scale at time 1. SETTING/PARTICIPANTS: A total of 275 patients with advanced cancer receiving palliative care, of whom 193 took part at follow-up. RESULTS: This study provided evidence for the internal consistency and validity of a new scale of 'acceptance and positivity' for use in advanced cancer patients. Patients with a desire for hastened death had lower acceptance and positivity, and patients with higher global quality of life reported a higher level. Social support was positively associated with acceptance and positivity. Higher scores on the acceptance and positivity scale were associated with reduced odds of a desire for hastened death at time 2. CONCLUSION: Adaptation to advanced cancer differs from adaptation to early stage cancer, comprising a general acceptance of the illness and trying to make the most of the time that is left. Individuals with low social support were less likely to evidence appropriate adaptation to their illness.

The factor structure of the PHQ-9 in palliative care.

OBJECTIVES: The Primary Care Evaluation of Mental Disorders Patient Health Questionnaire (PRIME-MD PHQ-9) is a common screening tool designed to facilitate detection of depression according to DSM-IV criteria. However, the factor structure of the PHQ-9 within the palliative care population has not been evaluated. METHODS: 300 participants completed the PHQ-9 within one week of referral to a palliative care service. Participants completed the PHQ-9 again four weeks later (n=213). Confirmatory factor analysis (CFA) and multiple-group CFA were undertaken to test the factor structure of the PHQ-9 and evaluate model invariance over time. RESULTS: A two-factor model comprising somatic and cognitive-affective latent factors provided the best fit to the data. Multiple-group CFA suggested model invariance over time. Structural equation modelling revealed that follow-up (time 2) cognitive-affective and somatic symptoms were predicted by their baseline (time 1) factors. CONCLUSIONS: The PHQ-9 measures two stable depression factors (cognitive-affective and somatic) within the palliative care population. Studies are now required to examine the trajectories of these symptoms over time in relation to clinical intervention and events.

Illness perceptions, adjustment to illness, and depression in a palliative care population.

CONTEXT: Representations of illness have been studied in several populations, but research is limited in palliative care. OBJECTIVES: To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. METHODS: A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. RESULTS: Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don't know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. CONCLUSION: Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease.

Predictors of non-remission of depression in a palliative care population.

BACKGROUND: Prospective studies of depression in palliative care are rare. Two studies that examine depression prospectively in patients with advanced disease have not looked at predictors of remission. AIMS: to explore prospective predictors of non-remission of depression in palliative care. DESIGN AND PARTICIPANTS: The study design comprised two data collections: initial assessment on referral to a palliative care service in South London, UK, and a four-week follow-up. Seventy six participants met the criteria for 'any depressive syndrome' at the time 1 assessment, using the PRIME-MD, who also participated at time 2. The outcome measure was remission (N = 39) or non-remission (N = 37) of depression by time 2. RESULTS: The findings showed that reporting low social support from family and friends at time of referral was the most powerful risk factor for non-remission. There was also a strong association between improved physical symptoms, from time 1 to 2, and remission of depression. CONCLUSIONS: This study in palliative care is the first of which we are aware to explore factors associated with non-remission of depression. Depressed patients identified with low social support on referral to palliative care services might particularly benefit from additional psychosocial care in the treatment of their depression. This study provides evidence that effective physical symptom management in palliative care may be a valuable intervention for depressive symptoms.

Gender differences in prevalence of depression among patients receiving palliative care: the role of dependency.

BACKGROUND: in community studies the prevalence of depression is higher in women than men; however, in palliative care settings this relationship is usually less strong, absent or reversed. AIM: to identify reasons for excess depression among men receiving palliative care. DESIGN: cross-sectional study. SETTING/PARTICIPANTS: we interviewed 300 patients recruited from a large hospice in South East London. Depression was measured using the Primary Care Evaluation of Mental Disorder. RESULTS: the higher prevalence of depression among men was not explained by a higher prevalence of particular types of cancer nor confounding by other covariates. Possible effect modifiers were examined. Depending on others for help with basic tasks (eating, dressing, washing or using the toilet) was a risk factor for depression in men only, with 37.8% of dependent men being depressed compared to 2.4% of similarly affected women (OR = 24.3, 3.1-193.2, p = 0.003). We observed a dose-response effect between the level of dependency and depression in men (p for trend = 0.01). CONCLUSION: depending on others for help with basic tasks appears to contribute to the burden of depression among men with terminal illness. This gender-specific association may explain why the usual gender differences in depression prevalence are not observed in palliative care.

The clinical epidemiology of depression in palliative care and the predictive value of somatic symptoms: cross-sectional survey with four-week follow-up.

This cross-sectional survey aimed to determine the prevalence and remission of depression in patients receiving palliative care and to ascertain the predictive value of somatic symptoms in making the diagnosis. Three hundred consecutive patients were interviewed within one week of their initial assessment by a specialist nurse at a palliative care service with in-patient and homecare facilities in south London, UK. Depression was assessed using the PRIME-MD PHQ-9. Presence of somatic symptoms (fatigue, sleep disturbance, poor appetite) was determined using the EORTC-QLQ-C30 quality of life questionnaire. Fifty-eight (19.3% [15.3 to 23.3]) patients met criteria for Major Depressive Disorder; 109 (36.3% [32.3 to 40.3]) met criteria for 'Any depressive syndrome'. Patients with Major Depressive Disorder were more likely to be male, and to have non-malignant disease, pain, poor performance status and desire for an early death. Of those patients with Major Depressive Disorder at baseline, 69% (27/39) had remitted four weeks later. Of those not depressed at baseline, 11% (19/174) met criteria for depression at follow-up. The positive predictive values of sleep disturbance, poor appetite and fatigue were low (<24%), whereas the negative predictive values of these symptoms were high (>89%). The high prevalence of depression in palliative care attests to the need for psychological assessment and support. Depression in patients receiving palliative care is unstable, suggesting that symptoms should be carefully monitored.

Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study.

OBJECTIVES: To determine the prevalence, severity and remission of desire for hastened death (DHD) in a UK representative sample of patients with advanced disease receiving palliative care and to examine the associations of desire for death. DESIGN: A cross-sectional survey with 4-week follow-up. SETTING: St Christopher's Hospice, Sydenham, South London, which is a large hospice with homecare, outpatient and inpatient facilities serving five London boroughs. PARTICIPANTS: 300 patients newly referred to the hospice for palliative care. MAIN OUTCOME MEASURES: The Desire for Death Rating Scale (DDRS). RESULTS: At T1 33/300 (11%) reported DHD and 11/300 (3.7%) had more serious or pervasive DHD. Of those who expressed DHD at T1 and were interviewed at both time points, 35% no longer reported these thoughts. Of those who reported no DHD at T1, 8% reported DHD at T2. The majority of those who had more severe DHD at T1 had a reduced DHD score by T2. Factors associated with T1 DHD included presence of non-malignant disease, depression, more severe physical symptoms, hopelessness and perceived loss of dignity. CONCLUSIONS: The prevalence of DHD was at the lower end of that seen in previous studies using similar samples. More severe DHD was uncommon and for most part remitted to some extent during the study. The provision of symptom control and timely detection and intervention for depression coupled with a focus on optimising function, instilling hope and preserving dignity are likely to contribute to alleviation of DHD in patients with advanced illness.

St Christopher's and the future.

The founding vision of St Christopher's Hospice was based on a recognition that permeating mainstream health care services would be essential and an emphasis on an adaptable philosophy rather than a building. Today, demographic and disease related changes mean that need and demand for end-of-life care will inevitably outstrip professional and financial resource. Hospices must engage with the development of cost-effective models of service delivery and rational planning. Only partnership working with the National Health Service, care homes, and others will ensure that appropriate care is available to everyone wherever the bed in which they die, regardless of diagnosis. Only collaboration and active engagement will ensure that future strategy in end-of-life care retains the original insight that its focus rightly includes not only patients but also the social context that will be affected by their death. Cost and patient choice dictate an emphasis on care at home. Health-promoting, public education and family-focused strategies will be essential. At a pivotal moment for the delivery of health care generally, hospices can play a vital part by marrying the role of "insistent conscience" of the health care service with continued cost-effective clinical innovation.