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      Fear, Pain, Denial, and Spiritual Experiences in Dying Processes

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          Abstract

          Purpose:

          Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical–psychological–social–spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients’ inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients’ altered awareness of time/space/body and patients’ altered social connectedness.

          Method:

          Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.

          Results:

          Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.

          Conclusion:

          Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.

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          Most cited references48

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          Near-death experience in survivors of cardiac arrest: a prospective study in the Netherlands.

          Some people report a near-death experience (NDE) after a life-threatening crisis. We aimed to establish the cause of this experience and assess factors that affected its frequency, depth, and content. In a prospective study, we included 344 consecutive cardiac patients who were successfully resuscitated after cardiac arrest in ten Dutch hospitals. We compared demographic, medical, pharmacological, and psychological data between patients who reported NDE and patients who did not (controls) after resuscitation. In a longitudinal study of life changes after NDE, we compared the groups 2 and 8 years later. 62 patients (18%) reported NDE, of whom 41 (12%) described a core experience. Occurrence of the experience was not associated with duration of cardiac arrest or unconsciousness, medication, or fear of death before cardiac arrest. Frequency of NDE was affected by how we defined NDE, the prospective nature of the research in older cardiac patients, age, surviving cardiac arrest in first myocardial infarction, more than one cardiopulmonary resuscitation (CPR) during stay in hospital, previous NDE, and memory problems after prolonged CPR. Depth of the experience was affected by sex, surviving CPR outside hospital, and fear before cardiac arrest. Significantly more patients who had an NDE, especially a deep experience, died within 30 days of CPR (p<0.0001). The process of transformation after NDE took several years, and differed from those of patients who survived cardiac arrest without NDE. We do not know why so few cardiac patients report NDE after CPR, although age plays a part. With a purely physiological explanation such as cerebral anoxia for the experience, most patients who have been clinically dead should report one.
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            Spirituality in the cancer trajectory.

            Spirituality is an essential element of person-centered care and a critical factor in the way patients with cancer cope with their illness from diagnosis through treatment, survival, recurrence and dying. Studies have indicated a significant relationship between spirituality and quality of life. Spirituality, in its broadest sense speaks to the meaning patients find in their lives especially during times of stress, illness and dying. Illness can trigger deep existential issues that could trigger profound suffering and distress. A model is presented that describes the role of each member of the healthcare team in addressing patients' spirituality. Spiritual distress, as a diagnosis, requires attention and treatment just as any other clinical symptom. Spiritual resources of strength need to be identifies and recognized as positive factors in patients' coping. Finally a treatment plan needs to include the spiritual as well as the physical and psychosocial issues of patients. Chaplains and other spiritual care professionals need to be recognized as the experts in spiritual care and should be integral members of the healthcare team. Integrating spirituality as an essential domain of care will result in better health outcomes, particularly quality of life for patients across the trajectory of cancer care.
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              Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death.

              To determine whether spiritual care from the medical team impacts medical care received and quality of life (QoL) at the end of life (EoL) and to examine these relationships according to patient religious coping. Prospective, multisite study of patients with advanced cancer from September 2002 through August 2008. We interviewed 343 patients at baseline and observed them (median, 116 days) until death. Spiritual care was defined by patient-rated support of spiritual needs by the medical team and receipt of pastoral care services. The Brief Religious Coping Scale (RCOPE) assessed positive religious coping. EoL outcomes included patient QoL and receipt of hospice and any aggressive care (eg, resuscitation). Analyses were adjusted for potential confounders and repeated according to median-split religious coping. Patients whose spiritual needs were largely or completely supported by the medical team received more hospice care in comparison with those not supported (adjusted odds ratio [AOR] = 3.53; 95% CI, 1.53 to 8.12, P = .003). High religious coping patients whose spiritual needs were largely or completely supported were more likely to receive hospice (AOR = 4.93; 95% CI, 1.64 to 14.80; P = .004) and less likely to receive aggressive care (AOR = 0.18; 95% CI, 0.04 to 0.79; P = .02) in comparison with those not supported. Spiritual support from the medical team and pastoral care visits were associated with higher QOL scores near death (20.0 [95% CI, 18.9 to 21.1] v 17.3 [95% CI, 15.9 to 18.8], P = .007; and 20.4 [95% CI, 19.2 to 21.1] v 17.7 [95% CI, 16.5 to 18.9], P = .003, respectively). Support of terminally ill patients' spiritual needs by the medical team is associated with greater hospice utilization and, among high religious copers, less aggressive care at EoL. Spiritual care is associated with better patient QoL near death.
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                Author and article information

                Journal
                Am J Hosp Palliat Care
                Am J Hosp Palliat Care
                AJH
                spajh
                The American Journal of Hospice & Palliative Care
                SAGE Publications (Sage CA: Los Angeles, CA )
                1049-9091
                1938-2715
                21 August 2017
                March 2018
                : 35
                : 3
                : 478-491
                Affiliations
                [1 ]Psychooncology, Oncology, Cantonal Hospital, St Gallen, Switzerland
                [2 ]Oncological Palliative Medicine, Cantonal Hospital, St Gallen, Switzerland
                [3 ]Palliative Center, Cantonal Hospital, St Gallen, Switzerland
                [4 ]Palliative Unit, Cantonal Hospital, Munsterlingen, Switzerland
                [5 ]Oncology, Cantonal Hospital, St Gallen, Switzerland
                Author notes
                [*]Monika Renz, PhD, Psychooncology, Oncology, Cantonal Hospital, P.O. Box, CH-9007 St. Gallen, Switzerland. Email: monika.renz@ 123456kssg.ch
                Article
                10.1177_1049909117725271
                10.1177/1049909117725271
                5794111
                28823175
                a8667588-2aed-4960-823b-ed5a732d3d38
                © The Author(s) 2017

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Categories
                Original Articles

                end-of-life care,fears of death and dying,spirituality,near-death experiences,existential suffering,deathbed phenomena,states of consciousness,spiritual care

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