Enabling patients to deal with their spiritual needs through affirmative relationships with health professionals may improve quality of life and reduce use of health resources. Further research to explore the relationship between spiritual distress and health service utilization is indicated.
Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.
Objectives To examine the care experiences of South Asian Sikh and Muslim patients in Scotland with life limiting illness and their families and to understand the reasons for any difficulties with access to services and how these might be overcome. Design Prospective, longitudinal, qualitative design using in-depth interviews. Setting Central Scotland. Participants 25 purposively selected South Asian Sikh and Muslim patients, 18 family carers, and 20 key health professionals. Results 92 interviews took place. Most services struggled to deliver responsive, culturally appropriate care. Barriers to accessing effective end of life care included resource constrained services; institutional and, occasionally, personal racial and religious discrimination; limited awareness and understanding among South Asian people of the role of hospices; and difficulty discussing death. The most vulnerable patients, including recent migrants and those with poor English language skills, with no family advocate, and dying of non-malignant diseases were at particularly high risk of inadequate care. Conclusions Despite a robust Scottish diversity policy, services for South Asian Sikh and Muslim patients with life limiting illness were wanting in many key areas. Active case management of the most vulnerable patients and carers, and "real time" support, from where professionals can obtain advice specific to an individual patient and family, are the approaches most likely to instigate noticeable improvements in access to high quality end of life care. Improving access to palliative care for all, particularly those with non-malignant illnesses, as well as focusing on the specific needs of ethnic minority groups, is required.
What constitutes a good death in sub-Saharan Africa? In Meru District in Eastern Kenya, we listened to 32 patients with ongoing cancer or AIDS, and to their carers as they talked about end-of-life experiences and care needs. Patients described how the support of close family relationships, and the care shown by their community and religious fellowships helped meet many of their emotional, social, and spiritual needs. But physical needs often went unmet. Patients died in pain. Some suffered in poverty, others were troubled by the guilt of using all available family resources to pay for treatment and care. Accessible pain relief, affordable clinic or inpatient care when required, and help to cope with the burden of care we~e among the key needs of patients. Until these are available, many will not die well. Resume I Qu'est-ce qui constitue une « bonne mort » en Afrique sous-saharienne? Dans Ie district de Meru, situe dans I'est du Kenya, nous avons interviewe 32 patients atteints du sida ou du cancer ainsi que leurs soignants afin qu'ils nous parlent de leurs experiences de fin de vie et des soins dont lis avaient besoin. Les patients nous ont dit a quel point Ie support de .Ieurs proches et "aide de leur eornmunaute et de leur Eglise leur avaient ete d'un grand secours en repondant a leurs besoins d'ordre emotionnel, social, et spirituel. Par ailleurs, leurs besoins d'ordre physique sont souvent derneures sans reponse. Les patients meurent dans la douleur. D'autres souffrent dans une grande pauvrete, ou encore eprouvent des sentiments de culpabllite parce qu'ils utilisent toutes les :essources flnancieres de leur famille pour payer les tralternents et les soins dont i1s ont besoin. Parmi les besoins primerdiaux qui ont ete souleves mentionnons I' acc.e~a des medicaments pour soulager la douleur, les cliniques a prix abordables, les soins dispenses en etablissements hospitaliers, et I'aide d'autres personnes pour partager et soulager Ie fardeau des soignants. Tant qu'on ne pourra repondre aces besoins, beaucoup de patients n'auront pas une « bonne mort ».
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