Dying, dignity, and new horizons in palliative End-of-life care

DepartmentManitoba Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Manitoba, Canada.
CA A Cancer Journal for Clinicians (Impact Factor: 115.84). 11/2005; 56(2):84-103; quiz 104-5.
Source: PubMed


Palliative care practitioners are now better able than ever before to ameliorate end-of-life symptom distress. What remains less developed, however, is the knowledge base and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patient's dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end-of-life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An empirically-derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.

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Available from: Harvey Max Chochinov
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    • "Las personas que experimentaron mayor sufrimiento presentaron también mayor dificultad en el ajuste general, en la adaptación y aceptación de la enfermedad, mayor pérdida del control y mayor coste personal percibido. Estos resultados coinciden con lo manifestado por los enfermos en el estudio de Wilson et al. (2007), así como con los hallazgos de otros estudios, donde personas con dificultades para lograr la aceptación y adaptación a su enfermedad y para percibir control en la experiencia presentan mayor malestar emocional y espiritual, y un sufrimiento moderado a severo (Black & Rubinstein, 2004; Chochinov, Tataryn, Wilson, Ennis & Lander, 2000; Mystakidou et al., 2010; Ray et al., 2006; Thompson et al., 2009). La dificultad en la adaptación y aceptación de la enfermedad, en conjunto con la pérdida de control y un alto coste percibido, se pueden entender como manifestaciones del agotamiento de los recursos personales para afrontar la enfermedad así como la indefensión producida por la enfermedad. "
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    ABSTRACT: Objetivo: Examinar la experiencia de sufrimiento y su relación con problemas físicos, psicológicos, sociales y espirituales en pacientes oncológicos. Método: 98 enfermos de una institución oncológica en cuidados paliativos participaron en el estudio. Se examinó el grado de sufrimiento, la intensidad y amenaza de síntomas y problemas físicos, psicológicos, sociales y espirituales, el grado de ajuste y de conciencia de enfermedad y las estrategias de afrontamiento. Se realizaron análisis estadísticos descriptivos y comparativos. Resultados:Aproximadamente el 50% de los participantes manifestaron un sufrimiento moderado. Los problemas más frecuentes fueron malestar general, astenia, alteración del estado de ánimo, pérdida de la autonomía, tristeza, preocupación por el futuro de la familia y sufrimiento. Un sufrimiento moderado a severo se asoció con mayor dificultad en el ajuste general y uso de la estrategia de afrontamiento de pensamiento desiderativo. Un menor sufrimiento se asoció con estrategias de reestructuración cognitiva y evitación de problemas. Conclusiones: Se resalta la importancia de atender los aspectos subjetivos de la experiencia. Cualquier síntoma o problema tiene el potencial de generar sufrimiento, en la medida en que sea percibido como amenazante, y los procesos regulatorios con los que cuente la persona impidan la adaptación. Palabras clave: sufrimiento; cáncer; final de vida; malestar emocional; factores asociados; psicológico; social; físico; espiritual Objective: To examine the experience of suffering and its relation with physical, psychological, social and spiritual problems in advanced cancer patients. Methods: Ninety-eight patients attending the palliative care unit of an oncologic institution participated in the study. The level of suffering and the intensity and threat perceived from symptoms and a series of physical, psychological, social and spiritual problems were examined, as well as adjustment levels, illness awareness and coping strategies. Descriptive and comparative statistics were obtained. Results: Nearly 50% of participants manifested moderate suffering. The most frequent problems encountered were: general distress, asthenia, emotional distress, loss of autonomy, sadness, concern for the family´s future and suffering. Severe suffering was associated to adjustment problems and use of wishful thinking. Lower levels of suffering were associated with cognitive restructuring and avoidance strategies. Conclusions: Results indicate the importance of focusing on the subjective aspects of the illness experience. Any symptom or problem has the potential to become a source of suffering when perceived as threatening and when the person´s regulatory processes are insufficient for adaptation. Keywords: suffering; cancer; end-of-life; distress; associated factors; psychological; social; physical; spiritual.
    Full-text · Article · Aug 2015 · Avances en Psicologia Latinoamericana
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    • "The dimensions found in this study – of openness and choosing to face reality, and of connecting body, mind and spirit – are consistent with Chochinov's insights in the article, “When Death is Near” – which is one of the most frequently downloaded articles in Canada [4]. It describes the physical changes associated with dying and the progression of change as death approaches. "
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    ABSTRACT: Coping with existential and spiritual concerns is inescapable in end-of-life care although not enough is known about the strategies and mechanisms involved. This pilot study focused on identifying the strategies for coping with existential and spiritual suffering at the end of life of secular Jews with advanced-stage cancer. Using the phenomenological approach to data collection, in-depth interviews were conducted with 22 patients receiving symptom relief care at a daycare oncology clinic. The interviews were recorded and transcribed verbatim, and the content was analyzed. Advanced-stage cancer patients employ several approaches to cope with existential and spiritual concerns. The themes emerging from the interviews present five dimensions of coping strategies: openness and choosing to face reality, connectedness and the significance of family, pursuit of meaning, the connection of body, mind and spirit and, lastly, humor and a positive outlook. Conclusions Since these concerns cause suffering and distress, intervention models targeting existential and spiritual suffering should be disseminated among professionals involved in caring for people with life-threatening illnesses.
    Full-text · Article · Jun 2014 · Israel Journal of Health Policy Research
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    • "And palliative care that targets the preservation of dignity as its overarching goal and guiding principle includes optimal symptom management ; accommodating informational, cultural and spiritual needs; paying exquisite attention to issues regarding personhood; a commitment to non-abandonment; and understanding the dynamics of ambivalence, meaning, purpose, continuity of self, role preservation, pride, acceptance and generativity. It includes attentiveness, and an ability to skillfully unravel, psychological and spiritual distress; and knowing how care tenor – a fundamental stance towards patients imbued with respect and affirmation – can profoundly shape a dying person's perspective, sense of self-worth, feelings of being a burden and even will to live (Chochinov 2002, 2006). In response to this dignity conserving approach to palliative care, even the former head of the Hemlock Society conceded, " if most individuals with a terminal illness were treated this way, the incentive to end their lives would be greatly reduced " (Girth 2002). "
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    ABSTRACT: Like the rest of Canada, the vast majority of Quebecers do not have access to comprehensive, quality palliative end-of-life care. Nevertheless, despite every substantive argument, compelling study, troubling precedent and cautionary tale regarding physician-hastened death, the Quebec Government has passed Bill 52—a Bill legalizing euthanasia or what is euphemistically being called Medical Aid in Dying (MAD). While the Bill purports to ensure that “everyone may have access, throughout the continuum of care, to quality care that is appropriate to their needs, including prevention and relief of suffering”, it states that organizational structures, institutions and palliative care hospices will carry out this mandate “within the limits of the human, material and financial resources at their disposal”. Perhaps, given the limitation of those resources, the only detail Bill 52 provides regarding how they will fulfill their mandate pertains to the administration and tracking of MAD. How will Quebecers feel when they realize that while their healthcare system can offer them euthanasia, it cannot assure them or their loved ones, access to healthcare professionals proficient in palliative care? All of which begs the question, is it really time to get MAD?
    Full-text · Article · Jan 2014
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