title: Beyond quality of life: the meaning of death and suffering in palliative care.
abstract: The majority of patients treated for cancer will have pain at some point in their journey. Suffering and death are common events in cancer patients. Palliative care has been very successful in reducing the discomfort caused by physical pain, but does not have the means to address the questions related to the meaning of suffering and death. The soothing of physical pain has helped highlighting other forms of pain, such as spiritual and existential pain, that uniformly accompany the terminal phase of the disease. Health care providers should be able to identify existential and spiritual pain for several reasons. First, because misdiagnosing these conditions may lead to inappropriate use of opioids and sedatives and may deprive both the patient and the patients family of the experience of death as an essential and irreplaceable experience of life. Second, because spiritual and existential pain may be addressed by properly trained professionals that should be involved in the management of the patients when needed. Chaplains and spiritual directors have no lesser role in the management of a patient than a cardiologist, a surgeon or a psychiatrist. Third because clinical scientists cannot close their eyes in front of one of the most common human experiences falling under their domain. Lack of training and of full understanding is a lame excuse for skirting the suffering of a person dying under our eyes. Health care providers unwilling or unable to abandon their areas of comfort and to embrace new and risky experiences are a liability for themselves, for their patients, and for the society they serve. Both spiritual and existential pain address the basic questions of human consciousness: while are we alive? Why do we die? Spiritual pain is most commonly experienced by a person who has a religious or otherwise sense of transcendence and may be helped by a hospital care trained chaplain. Existential pain is more typical of a person uninterested in a transcendent context and may be more challenging to address in the health care context. Though both may produce emotional pain, neither is by itself a form of emotional pain and cannot be fully cared for by a counselor. The clinical definition of spiritual and existential pain is evolving and so is its treatment. Classical clinical trials have little to offer for these conditions. Qualitative research in its various forms, including open ended questions, content analysis and mainly personal narrative are the most promising forms of research to comprehend spiritual and existential pain.
authors.affiliation: Department of Interdisciplinary Oncology, University of South Florida College of Medicine, H Lee Moffitt Cancer Center and Research Institute, Tampa, FL, USA. Lodovico.Balducci@moffitt.org
authors.forename: Lodovico
authors.initials: L
authors.lastname: Balducci
mesh_terms: D000701:Analgesics, Opioid; D006801:Humans; D009369:Neoplasms / Q000523:psychology; D010146:Pain; D010166:Palliative Care / Q000523:psychology; D011788:Quality of Life; D029181:Spirituality; D013727:Terminal Care / Q000523:psychology
chemical_list: D000701:Analgesics, Opioid