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The Relief of Existential Suffering
Abstract
Advanced and progressive illnesses bring existential suffering to patients as an inevitable consequence of the disease and its treatment. Physicians need a typology of existential distress to aid its recognition and improved management. The major forms of existential challenge include (1) death anxiety, (2) loss and change, (3) freedom with choice or loss of control, (4) dignity of the self, (5) fundamental aloneness, (6) altered quality of relationships, (7) our search for meaning, and (8) mystery about what seems unknowable. An adaptive response to each challenge promotes equanimity, peace, and fulfillment while sustaining engagement with life, creativity, and joy. Physicians can do much to nurture courage and maintain each person's sense of meaning, value, and purpose.
... Existential suffering "develops from the threat to life or injury to the self with resultant in distress, grief at loss, emerging helplessness, and likelihood that this situation will endure" [1] (p. 1). Advanced cancer may bring existential suffering to those affected. ...
... Traditionally in clinical practice, existential aspects of illness have been defined as outside the scope of medical responsibility [7], as a task assigned for the chaplaincy. An increasing number of scholars, however, have argued that physicians can and should play a role in attending to the patient's existential concerns [1,2,[8][9][10][11], as part of person-centered care [12]. For many patients attempting to orient the unfamiliar territory of illness, the physician is an important (perhaps the only) guide. ...
... An utterance providing or seeking only biomedical or procedural information (e.g., about medical tests, appointments, or information from other physicians) without any indication whether or how the illness, treatment, side-effects, or symptoms are or will be either [1] affecting the patient's life, [2] interfering with the patient's activities, or [3] tolerable to the patient. Patient centered An utterance providing or seeking biomedical information or procedural information with an explicit indication whether or how the illness, treatment, side-effects, or symptoms are or will be either [1] affecting the patient's life, [2] interfering with the patient's activities, or [3] tolerable to the patient, OR an utterance seeking information about (or commenting on/relating to) the patient's hopes, dreams, plans, goals, preferences, decision-making-preferences, wishes, concerns or fears. ...
Objective:
In a recent study, we explored what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation and how they communicate such concerns. The current study builds on these results, investigating how the physicians responded to those concerns.
Methods:
We analyzed video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue.
Results:
We identified 185 immediate physician-responses to the 127 patient existential utterances we had previously identified. The responses demonstrated three approaches: giving the patient control over the content, providing support, and taking control over the content. The latter was by far the most common, through which the physicians habitually kept the discussion around biomedical aspects and rarely pursued the patients' existential concerns.
Conclusions:
Although the physicians, to some extent, allowed the patients to talk freely about their concerns, they systematically failed to acknowledge and address the patients' existential concerns.
Practice implications:
Physicians should be attentive to their possible habit of steering the agenda towards biomedical topics, hence, avoiding patients' existential concerns. Initiatives cultivating behavior enhancing person-centered and existential communication should be implemented in clinical practice and medical training.
... Severe illness, such as advanced cancer, poses a threat to all aspects of being, and thus brings existential suffering to the ones affected [1][2][3]. This has implications for what kind of information and support the patients need to cope and to remain autonomous agents in their lives [4,5]. ...
... Published by Elsevier B.V. CC_BY_4.0 existential suffering; for example, fear of death, fear of the future, physical decline, loss of self, loss of autonomy, loss of dignity, loss of relations, loss of social roles, dependency, lack of power, lack of trust and lack of/search for hope, meaning and purpose in life. Building on previous work by Yalom [12], Kissane summarized the major forms of existential challenge in a typology that includes death anxiety, loss and change, freedom with choice, dignity of the self, fundamental aloneness, altered quality of relationships, search for meaning, and mystery about what seems unknowable [1]. Others have emphasized more uplifting aspects of existential experience when seriously ill, such as increased sense of meaning and purpose and improved existential health, affecting quality of life in a positive way [13], as well as the possibility of "existential maturity" [14]. ...
... In routine hospital consultations, the patients in this study revealed how the cancer experience affected all aspects of life, leading to losses and threats of loss that are strongly associated with existential suffering [11,15]. Only a few patients conveyed how they reoriented in search for new meaning and hope (e.g., Table 6, Example 23 and 24), which is associated with coping [1] and existential health [15]. Existential utterances were usually patient-initiated. ...
Objective
Advanced cancer poses a threat to all aspects of being, potentially causing existential suffering. We explore what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation, and how they communicate such concerns.
Methods
We analyzed thirteen video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue.
Results
Nearly all patients disclosed how the illness experience included losses and threats of loss that are strongly associated with existential suffering, displaying uncertainty about future and insecurity about self and coping. Patients usually disclosed existential concerns uninvited, but they did so indirectly and subtly, typically hiding concerns in biomedical terms or conveying them with hesitation and very little emotion.
Conclusions
Patients may have existential concerns they want to address, but they may be uncertain whether these are issues they can discuss with the physician.
Practice implications
Health professionals should be attentive to underlying existential messages embedded in the patient’s questions and concerns. Acknowledging these existential concerns provides an opportunity to briefly explore the patient’s needs and may direct how the physician tailors information and support to promote coping, autonomy, and existential health.
... Therefore, the question arises whether penile transplantation can reverse this. Existential suffering as defined by Kissane refers to the impact of an advanced medical condition (such as penile amputation) on the individual's life experience and reason for existence [13,15]. Enforced ostracism, as seen in South African men after penile loss, has been labelled 'the kiss of social death' [16]. ...
... This was preferred over a quantitative/quality-of-life approach, which would have reduced their experiences to figures and numbers. Maslow's expanded hierarchy of needs as well as the theory of existential suffering as described by Kissane provided the theoretical framework [15]. ...
... The rejection and ostracism experienced from their traditional communities, losing their partners, and in Thulani's case, losing his family support, likely enhanced their existential suffering and their social death. This might have created a strong enough need to overshadow the potential psychological rejection of the transplanted organ [15]. ...
Background
In South Africa, penile loss is a recognised complication of ritual circumcision which has a profoundly negative effect on these men's psyches and their everyday lives. The purpose of this paper was to investigate the experiences of the first two South African penile allograft transplantation recipients in order to assess the psychosocial impact of this surgery.
Materials and methods
A qualitative descriptive phenomenology approach was used. A total of four in-depth interviews were conducted with the two South African penile transplant recipients. The interviews were transcribed verbatim while adding the field and observational notes. Thematic analysis was used to derive meaning from the collected data.
Results
After the penile loss, both participants reported feeling suicidal for the following reasons: their communities shunned them and regarded them as ‘dead,’ they felt severely ashamed of their disfigured bodies, they were unable to develop intimate relationships and could not have children. Transplantation gave them a fully functional penis, which resolved the majority of these issues. The participants were able to build relationships and satisfy their own and their partners' sexual and relationship needs. The transplant led to complete restoration of their self-image and manhood. They were, however, still persecuted by their traditional communities as they had not successfully completed the ritual circumcision ceremony.
Conclusion
This study emphasises the necessity of offering penile transplantation as treatment for penile loss as this is not only life enhancing but lifesaving, especially within the South African context.
... The autonomy/dependency dialectic is part of the human condition. Despite our best efforts, we are social animals who generally cannot flourish in isolation (Lee and George 2008, p. 189;Kissane 2012Kissane , p. 1503Agich 2003, p. 96). One can never be a functioning adult without first being dependent: there is no such thing as a selfsufficient infant or child (Cobb 2016, p. 32). ...
... Patients often feel shame in needing help with tasks that are typically associated with children: going to the bathroom, bathing, being fed, getting dressed, etc. This shame can come from inability to adapt to changing physical abilities or the loss of privacy that comes with needing assistance with daily tasks (Kissane 2012(Kissane , p. 1503Rodriguez-Prat et al. 2016, p. 12). Accepting help with "undignified" tasks sometimes feeds the patient's perception of being a burden. ...
... When one evaluates her life using common conceptions like autonomy as independence, dependency as weakness, and dignity as control, one's future can look bleak. Re-framing these values can be beneficial for both patients and families (Kissane 2012(Kissane , p. 1503. In fact, when it comes to lessening feeling like a burden, the mental perspective of patients may be even more important than physical independence (Chochinov et al. 2007;McPherson et al. 2007). ...
As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable.
... Depressive symptoms are commonly associated with existential distress, death anxiety and increased pain in patients with advanced cancer [6][7][8]. Early and effective treatment of depression is essential to reduce end-of-life distress and improve the quality of life in patients with advanced cancer [9]. Monoaminergic antidepressants, such as selective serotonin reuptake inhibitors (SS-RIs), require several weeks to achieve an antidepressant effect. ...
... (2) Males and females ≥18 years of age; (3) Meet DSM-5 criteria for MDD, with a current major depressive episode (MDE). A diagnosis of a current MDE was confirmed using a mini international neuropsychiatric interview (MINI) conducted by a delegated member of the research personnel while assessing eligibility; (4) Depression severity in the mod-erate to severe range, as determined by a MADRS [22] score greater than or equal to 20; (5) Confirmed diagnosis of cancer and an estimated life expectancy of less than 12 months, as determined by the clinical care team; (6) No presence of delirium, suspected delirium or clinically significant confusion; (7) No severe hypertension (systolic blood pressure greater than or equal to 160 and/or diastolic blood pressure greater than or equal to 100) or severe cardiac decompensation; (8) No previous stroke history (based on history and review of medical records); (9) No history of intolerability, hypersensitivity or allergy to ketamine; (10) No history of bipolar disorder, psychotic disorders, substance use disorders or active suicidality based on a MINI conducted by a delegated member of the research personnel; (11) No current symptoms of psychosis or perceptual disturbances of any kind per investigator discretion; (12) Not a pregnant or breastfeeding woman. ...
Antidepressants require several weeks for the onset of action, a lag time that may exceed life expectancy in palliative care. Ketamine has demonstrated rapid antidepressant effects, but has been minimally studied in cancer and palliative care populations. Herein, the objective was to determine the feasibility, safety, tolerability and preliminary efficacy of intranasal racemic ketamine for major depressive disorder (MDD) in patients with advanced cancer. We conducted a single-arm, open-label phase II trial at the Princess Margaret Cancer Centre in Toronto, ON, Canada. Participants with advanced cancer with moderate to severe MDD received three flexible doses of intranasal (IN) ketamine (50–150 mg) over a one-week period. The primary efficacy outcome was an antidepressant response and remission rates as determined by the Montgomery–Åsberg Depression Rating Scale (MADRS) from baseline to the Day 8 primary endpoint. Twenty participants were enrolled in the trial, receiving at least one dose of IN ketamine, with fifteen participants receiving all three doses. The Day 8 antidepressant response (MADRS decreased by >50%) and remission (MADRS < 10 on Day 8) rates were high at 70% and 45%, respectively. Mean MADRS scores decreased significantly from baseline (mean MADRS of 31, standard deviation 7.6) to Day 8 (11 +/− 7.4) with an overall decrease of 20 points (p < 0.001). Antidepressant effects were partially sustained in the second week in the absence of additional ketamine doses, with a Day 14 mean MADRS score of 14 +/− 9.9. Common adverse effects included fatigue, dissociation, nausea, dysgeusia and headaches; almost all adverse effects were mild and transient, resolving within 2 h of each ketamine dose with one dropout related to adverse effects (negative dissociative episode). Given these promising findings, larger, controlled trials are merited.
... One reason is that it is easier for researchers to focus on causes of suffering rather than the experience of suffering. For instance, a number of causes of existential and spiritual suffering have been described, including a loss of personal meaning, loss of life purpose or direction, loss of dignity, loss of control, social isolation, and loneliness (Boston et al., 2011;Kissane, 2012;Mount et al., 2007). Existential suffering has been analyzed as "an incapacitating state of despair resulting from an inner realization that life is futile and without meaning" (Kissane, 2014). ...
... decreased social engagements due to heart-failure induced dyspnea, or loss of agency and independence associated with ALS progression) thereby equipping family and clinicians to respond to suffering with targeted empathy and care (Cánovas et al., 2018). This process has the potential to diminish a patient's loneliness and isolation (Kissane, 2012;Mount et al., 2007). ...
While the relief of suffering is an important goal of medicine, suffering is often missed or ignored in clinical practice. We believe that this occurs for two reasons. First, clinicians often approach suffering by focusing on the causes of suffering rather than the experience of suffering. Second, the subjective nature of suffering makes it difficult to discuss. To address these gaps, we read 52 relevant works of literature and performed qualitative analysis to categorize figurative language into themes of psychological (i.e., non-physical) suffering. We identified 254 excerpts of figurative language characterizing psychological suffering. Among these excerpts, 13 salient themes recurred, including: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The development of a shared language of suffering can foster a therapeutic patient-clinician relationship and improve clinicians' ability to recognize and address a patient's experience of suffering.
... Cancer is a crisis of one's physical and emotional health and also encompasses an existential dimension by highlighting one's inevitable mortality and often shattering core assumptions about one's place in the world [1,2]. Conceptualized as existential disruption, cancer can lead individuals to reexamine their lives and values, which, for some, can result in unresolved suffering and despair [3,4]. However, for others, suffering may eventually lead to positive change and personal growth, which might be considered a desirable side effect of the cancer experience: doubts may lead to insight, despair to poise, and search for meaning to sense-making and purposeful living [5,6]. ...
... Our study adds to a growing body of literature on existential outcomes in serious illness [3]. Based on Victor Frankl's writings, Breitbart et al. developed meaning-centered psychotherapy for individuals with advanced cancers, which has been successfully rolled out to multiple populations and settings [5,[23][24][25]. ...
BackgroundA cancer diagnosis may lead to existential despair but potentially also to perceived inner growth. This growth may be fostered through meaningful connections with others. We sought to describe existential and related psychosocial outcomes and their association with a sense of connection with others in individuals with gynecological and breast cancers.Methods
We used cross-sectional data from two ongoing cohort studies of gynecologic (N = 236) and breast (N = 62) cancer survivors at the University of Minnesota. We summarized self-reported post-traumatic growth (PTG), sense of meaning, peace, spirituality, hopelessness, loneliness, and three exploratory measures of sense of connections with others, and used multivariate linear regression models to describe the associations between them.ResultsHope, sense of meaning, peace, and spirituality were generally high among participants, but PTG and loneliness scores varied more. Sense of connection with others was consistently associated with greater PTG and decreased loneliness with medium effect sizes: for example having positive interactions with most/all versus nobody on one’s medical team, PTG (coefficient 10.49, 95% CI: 4.10, 16.87, Cohen’s D 0.44); loneliness (coefficient − 0.85, 95% CI: − 1.36, − 0.34, Cohen’s D 0.43). Those who knew someone in a similar life situation felt a strong sense of connection with such a person; however, 28% of participants had not met anyone in a similar situation.Conclusions
There may be untapped opportunities to nurture beneficial existential outcomes in cancer survivors. Potential interventions include connecting survivors with one another and creating opportunities for more authentic patient-provider relationships, for example, within palliative care.
... Existential suffering-a product of the threat to life and the self and subsequent distress due to the threat's persistence and finality-is increasingly recognised as an important aspect of a patient's total pain that falls within medicine's purview to identify, study, and treat. 4 Cognisant of the absence of standard definitions or metrics, existential suffering is common near death, and has been reported to occur in a quarter of patients with cancer. 5 Existential suffering is clinically relevant, and afflicts patients with feelings of fear, hopelessness, grief, and demoralisation. ...
... Further work must add nuance to various facets of existential suffering, work that Kissane, Yalom, and others have developed. 4 Metrics for clinically relevant existential suffering might lead to ways in which existential suffering could be identified among patients at or near the end of life. ...
... spiritual or religious (e.g. spiritual distress; questioning one's belief in the afterlife, religious faith, or the existence of God) (Werth et al., 2002;Baarsen, 2009;Kübler-Ross, 1981[1977; Robinson et al., 2016;Breitbart et al., 2000;Chochinov et al., 2005;Chochinov et al., 2007;Wilson et al., 2005;Vachon, 2009;Kissane, 2012;LeMay & Wilson, 2008). ...
... • Preoccupations with the meaning of life are frequent at end of life, but existential distress is not. The latter can be associated with poor quality of life, depression or anxiety, as well as a wish for a hastened death (LeMay & Wilson, 2008;Kissane, 2012). ...
... By using Plato's ideas, Aristoteles states that the man, in front of nature and events that are not understandable, is "thauma-tized" (θαῦμα, thauma, as wonder, astonishment, but also terror, speechless anguish) (Llewelyn, 1988), and therefore, he addresses philosophy. 1 Cancer, as a traumatic stressful event is indeed a powerful expression of nature, demonstrating the unpredictability of existence and provoking significant existential suffering (Kissane, 2012;Grassi et al., 2017aGrassi et al., , 2017bVehling and Kissane, 2018). Cancer forces the subject to acquire a new view of his/her own world in order to gain knowledge and find the meaning of what he/ she has to cope with. ...
... Regarding the first issue, our findings indicate the universality of the themes of existential challenges determined by cancer, such as fear of death, concerns about being a burden to others, a sense of loneliness, pointlessness, or hopelessness; grief, regret, embitterment about what has been missed in life; and loss of dignity (Langle, 2008;Kissane, 2012). However, some interesting aspects emerged through the reflective sharing of the patients' experience in our context. ...
Objective:
The objectives of this study were to evaluate, in the Italian cultural context, breast cancer patients' main meaning themes related to the experience of the disease, on the one side, and to be part of an existentially oriented group intervention, on the other.
Method:
A short reorientation-existential (RET) group intervention, structured by using some tools and background from cognitive analytic therapy (CAT) and based on the meaning-centered psychotherapy (MCP) existential framework, was delivered to 29 breast cancer patients. The sessions were audio-recorded and transcribed verbatim, with the narratives from reflective exercises (meaning of the journey cancer, meaning of the journey of intervention) uploaded to computer software NVivo 11. Analysis of the transcripts emerged from reflective exercises on the personal meaning of cancer and the letters of meaning (goodbye letter) written by the patients to express the meaning of their experience in the group was conducted through the interpretative phenomenological analysis (IPA) framework.
Results:
Four superordinate themes were identified in the exercise meaning of the experience of cancer, namely "sense of stigma and loneliness (the foreigner)," "guilt (unjust guilt and anticipatory guilt)," "reconsidering one's own life and nostalgia," and "rebirth (a new life, life after life)." Three superordinate themes were found in the meaning of the group experience in the letters, namely "togetherness and gratitude," "legacy," and "acceptance."
Significance of results:
The study confirmed that a short group intervention, based on the existentially oriented framework and delivered in a public clinical healthcare setting, was enriched by focusing on the personal meaning of cancer. Some themes, such as loneliness, nostalgia, and rebirth, emerged during reflection giving, in written letters to participants, the sense of the group therapeutic experience.
... 41 The availability of a validated measure of death anxiety and the evidence that it is responsive to psychotherapeutic intervention 12 support the value of more routine screening for its presence. It has been suggested that the relief of death-related distress is crucial to managing existential suffering in EOL care 42 and is aligned with palliative care's aim to provide psychological, social, emotional, and spiritual support and relief. 7,43 The two factors of the DADDS allow the assessment of two broad domains and can support more specific enquiry about and attention to these respective concerns. ...
... Overall, the findings of this study suggest that the DADDS and its factors are useful measures to assess death-related distress and to monitor the response of this state to psychotherapeutic intervention in patients with advanced disease. It has been suggested that the relief of death-related distress is crucial to managing existential suffering in EOL care 42 and is aligned with palliative care's aim to provide psychological, social, emotional, and spiritual support and relief. 7,43 Accordingly, the DADDS and its factors would also be useful to palliative care providers to screen for death-related distress in patients with advanced disease and to identify significantly distressed patients who may benefit from psychotherapeutic interventions. ...
Background
Distress about dying and death is an important clinical and research outcome in advanced cancer. A 15‐item Death and Dying Distress Scale (DADDS) measure has undergone preliminary validation, but full validation in a large sample has not previously been reported. We investigated its psychometric characteristics and responsiveness to a therapeutic intervention
Methods
This is a secondary analysis of baseline data obtained from a randomized controlled trial of psychotherapeutic intervention for patients with advanced cancer. Participants (n=386) completed the DADDS, and measures of depression, anxiety, demoralization, quality of life (including preparation for end of life), spirituality, attachment security, and symptom burden
Results
A confirmatory factor analysis revealed factors related to ‘Finitude’ and to ‘Dying’. Both factors showed good internal consistency (Cronbach α=.861–.949). DADDS scores were significantly higher in females, those with lower income, and not working. Construct validity was demonstrated by a positive correlation between DADDS and demoralization (r=.569–679), and a negative correlation with preparation for the end of life (r=‐.475–‐.678). At 6 months, intervention participants with moderate DADDS scores at baseline reported significantly lower DADDS scores on both factors compared to UC.
Conclusions
The DADDS is a valid and brief two‐factor measure that assesses distress related to the shortness of time and to the process of dying. The total and factor scores have utility in the clinical and research assessment of death‐related distress in patients with advanced cancer.
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... Life, people with cancer experience firsthand, is uncertain and cannot be controlled fully, while people are mortal, vulnerable, and dependent upon each other and the unknowable. Paradoxically, although the confrontation with cancer thus disrupts and pervades one's entire life and may lead to existential despair, and an all-encompassing suffering, characterized by the experience of alienation, helplessness, hopelessness, and meaninglessness, this confrontation might also lead to powerful processes of transcendence and transformation, prompting a new awareness of the body, an existential re-evaluation and reappraisal of life, development of the self, and a sense of personal and spiritual growth, connectedness, and inner peace (Best et al. 2015;Hefferon et al. 2009;Kissane 2012;Vehling and Kissane 2018). ...
... The findings of this study indicate a different understanding of the distress caused by cancer, or of the best manner of addressing this distress. In the field of psycho-oncology, the confrontation with cancer is often understood as the existential plight or challenge of cancer, in which the occurrence of existential and spiritual distress initiates a cognitive search for meaning that might ultimately result in positive change, renewal or growth (Breitbart et al. 2010(Breitbart et al. , 2015Kissane 2012;Lee 2008;Pool 2009;Vehling and Kissane 2018;Weisman and Worden 1976). Such understanding of the challenge of cancer departs from the idea that existential or spiritual distress is grounded in the belief that one's life (in the face of cancer) is meaningless, and that existential distress can be addressed by incorporating the confrontation with cancer into a newly reconstituted meaning, that again provides a sense of order and purpose (Lee 2008); or by sustaining or enhancing one's sense of meaning (Breitbart et al. 2010(Breitbart et al. , 2015(Breitbart et al. , 2018. ...
In the confrontation with cancer, spiritual re-evaluation may help people to transform all-encompassing suffering into spiritual growth and psycho-spiritual wellbeing. The aim of this study was to examine whether spiritual life review (SLR), a semi-structured group narrative intervention that supports people with cancer to write and present their spiritual life story, is effective for the improvement of spiritual re-evaluation, spiritual growth, and psycho-spiritual wellbeing. In this mixed methods study, 57 cancer patients participated. Quantitative data were collected by means of patient reported outcomes (SAIL, Dutch Ryff, and NEIS) at baseline, post-intervention, and three and nine months follow-up (44 participants completed up to 9 months post-intervention). Changes over time were assessed via linear mixed model analysis (LMM). Qualitative data were collected by means of semi-structured interviews with 33 participants nine months post-intervention, and were coded in a two-stage process. Participating in SLR facilitated spiritual re-evaluation, and improved the course of spiritual growth, psycho-spiritual wellbeing, and ego-integrity. This study provides evidence that SLR is likely to improve spiritual re-evaluation, spiritual growth, and psycho-spiritual wellbeing after confrontation with cancer; it also suggests the importance of self-affirmation and ego-integrity for spirituality; and underscores the relevance of narrative spiritual interventions in the oncology setting.
... The personal experience of unbearable suffering is influenced by a complex interaction between illness-related factors, premorbid personality and coping styles, support from the environment, and other social and societal factors. Although it is up to the patient to judge her/his existential mental state, the circumstance that the suffering is both caused by the underlying serious and incurable disorder and that it cannot be alleviated, needs to be assessed by the physicians involved (Gopal 2015;Kissane 2012;Raus and Sterckx 2015;Strang et al. 2004;Varelius 2014). ...
Belgium is one of very few countries where euthanasia on the basis of psychiatric illness is legally possible. Three physicians involved in the euthanasia of a 38-year-old woman suffering from psychiatric illness recently faced a criminal trial for “murder by poisoning”, for allegedly having failed to comply with several requirements of the Belgian Euthanasia Law. Although none of the physicians were convicted, the case generated extensive debate, in the media and the general public as well as in the medical profession and among policy makers. In this chapter, we take this trial as the starting point for a critical analysis of the clinical-psychiatric, ethical, and legal issues involved in evaluating euthanasia requests in cases of complex psychiatric disorders. In these cases, the requirements of the Belgian Euthanasia Law could be improved by mandating the advice of two psychiatrists, who are experts in the treatment of the specific condition of the person requesting euthanasia. Simultaneously with the process of evaluating the euthanasia request, there should be a parallel treatment track in which all therapeutic and recovery-oriented options are explored. These two tracks should not be in the hands of the same physician.KeywordsEuthanasiaBelgiumMental suffering
Psychiatric illness
Criminal law
... Existential anxiety reaches beyond concrete life threats and refers to concerns that are provoked by core threats to human existence (Yalom, 2008). Being ill and unsure about the future may give rise to existential suffering (Kissane, 2012) and fears about meaninglessness, death and fundamental loneliness can come to the front. Existential anxiety involves the expression of these ultimate concerns about life and the confrontation with the possibility of nonbeing (Weems, Costa, Dehon, & Berman, 2016). ...
Research on the effects of chaplaincy care is scarce and hampered by methodological limitations. Our quasi-experimental study (n = 256 at baseline) aimed to gain insight into the immediate and intermediate impact of chaplaincy care on inpa-tients' existential anxiety, peace, anxiety and depressive symptoms. Multilevel modeling was used to analyze the data. After controlling for age, gender, education, (non)religion/(non)belief and religiosity, participants receiving chaplaincy care demonstrated greater immediate improvement in peace compared to the control group at posttest. This was not found for anxiety, depressive symptoms or existential anxiety, nor for any of the outcomes at the three-week follow-up assessment.
... The few available studies indicate the need of NH residents to talk about existential issues (Sjöberg et al., 2018;Smedbäck et al., 2017;Haugan et al., 2013, Haugan, 2014b, 2014c, 2014d. By contrast, while the perception of existential suffering is emphasised in research on cancer care and palliative medicine (Gautam et al., 2019;Kissane, 2012), this is hardly studied in the NH context. ...
Aims and objectives:
To investigate the association between perceived nurse-patient interaction and quality-of-life among nursing home residents, adjusted for loneliness, anxiety and depression.
Background:
Symptoms of anxiety and depression are known to residents of nursing homes along with cognitive impairment, physical inactivity and low quality-of-life. Anxiety, depression and loneliness are found detrimental to NH residents' quality-of-life. The nurse-patient relationship is important for patient's well-being, both in terms of illness and symptom management.
Design:
Cross-sectional design.
Methods:
Data were collected in 2017 and 2018 from 188 residents in 27 nursing homes resided in two large urban municipalities in Middle and Western Norway. The inclusion criteria were: (1) local authority's decision of long-term NH care; (2) residential stay 3 months or longer; (3) informed consent competency recognised by responsible doctor and nurse; (4) capable of being interviewed, and (5) aged 65 years or older. This article is executed in accordance with STROBE statement.
Results:
Adjusting for age, sex, anxiety, depression and loneliness, perceived nurse-patient interaction was statistically significant to quality-of-life. While anxiety and depression showed insignificant estimates, loneliness demonstrated a significant relation with quality-of-life. Nurse-patient interaction and loneliness explained together 25% of the variation in quality-of-life.
Conclusion:
This study suggests that loneliness is frequent as well as more detrimental to quality-of-life among nursing home residents compared to anxiety and depression. Furthermore, the present results show that the nurse-patient interaction represents an essential health-promoting resource for Quality-of-life in this population.
Relevance to clinical practice:
Staff nurses need to exercise their awareness of loneliness to meet residents' needs. Nursing educations should provide knowledge about nurse-patient interaction, and students as well as staff nurses in NHs should be trained, for instance by simulation, to use the nurse-patient interaction as a health-promoting resource. Finally, loneliness represents a bigger challenge than depression and anxiety; accordingly, building nurses that are capable of meeting patients' needs and facilitate care that counteracts loneliness is highly warranted.
... Adults with advanced cancer report a range of palliative care challenges, including anxiety and depression in the face of imminent loss and how to make the most of their remaining time, spiritual/ existential needs related to making sense of their illness, fear of dying/ death, and physical symptoms [4][5][6][7][8][9][10][11]. To engage themselves and their loved ones in advanced cancer-related care and decision making, many recommend that patients engage in advance care planning (ACP), defined as "a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care" [12]. ...
Background
Up to half of adults with advanced cancer report anxiety or depression symptoms, which can cause avoidance of future planning. We present a study protocol for an innovative, remotely-delivered, acceptance-based, multi-modal palliative care intervention that addresses advance care planning (ACP) and unmet psychological needs commonly experienced by adults with metastatic cancer.
Methods
A two-armed, prospective randomized controlled trial (RCT) randomizes 240 adults with Stage IV (and select Stage III) solid tumor cancer who report moderate to high anxiety or depression symptoms to either the multi-modal intervention or usual care. The intervention comprises five weekly two-hour group sessions (plus a booster session one month later) delivered via video conferencing, with online self-paced modules and check-ins completed between the group sessions. Intervention content is based on Acceptance and Commitment Therapy (ACT), an acceptance, mindfulness, and values-based model. Participants are recruited from a network of community cancer care clinics, with group sessions led by the network’s oncology clinical social workers. Participants are assessed at baseline, mid-intervention, post-intervention, and 2-month follow-up. The primary outcome is ACP completion; secondary outcomes include anxiety and depression symptoms, fear of dying, and sense of life meaning. Relationships between anxiety/depression symptoms and ACP will be evaluated cross-sectionally and longitudinally and theory-based putative mediators will be examined.
Discussion
Among adults with advanced cancer in community oncology settings, this RCT will provide evidence regarding the efficacy of the group ACT intervention on ACP and psychosocial outcomes as well as examine the relationship between ACP and anxiety/ depression symptoms. This trial aims to advance palliative care science and inform clinical practice.
Trial Registration
Clinicaltrials.gov NCT04773639 on February 26, 2021.
... Evaluating suffering can be a complex task for experienced clinicians, as it requires a high degree of skills and sufficient time (46). In fact, suffering is by definition global, non-quantifiable, multidimensional, and influenced by many factors, including an existential dimension (47)(48)(49)(50). The challenges facing the terminally ill can be physical, psychological, existential, and spiritual (51). ...
Background:
Medical assistance in dying (MAiD) was legalized in Canada in 2016, although it has been accessible as an end-of-life option in the province of Quebec since 2015. Before its implementation in clinical settings, few physicians had received formal training on requests assessments. New data indicate MAiD requesters have high rates of psychiatric comorbidities. Hence, assessment and management of psychiatric and psychosocial issues among MAiD requesters are important competencies to develop for assessors, although few training programs address them. The aim of our study was to explore physicians' self-perceived educational needs on psychiatric aspects related to MAiD in the province of Quebec.
Methods:
We conducted a cross-sectional online survey and used a non-probability sampling design in one academic tertiary care center. A descriptive analysis was performed, and responders were compared on different variables.
Results:
From twenty-five physician assessors, nineteen responded anonymously to an online survey (n=19). The findings of our pilot study revealed that participants felt highly competent in most psychiatric aspects at end-of-life and related to MAiD practice, except for psychotherapy and psychopharmacology as well as depression identification. Most indicated strong interest in further training. No statistical differences were found among responders regarding previous experience or training in palliative care.
Conclusions:
Based on our study, MAiD assessors reported high level of competency in managing psychiatric issues among requesters, but that they also expressed a strong desire for additional education.
... (7) Paradoxically, a cancer diagnosis may provide an opportunity for life reflection, relationship building, and meaningful encounters. (8) Herein lies the chance to plan for one's future and, if courageous enough, one's death. ...
Context
Personal values are individual conceptions of the desirable appraisals and actions that guide our attitudes and behaviour. Advance care planning (ACP) now emphasises the consideration of personal life goals and values expressed as a Values Directive (VD) to guide discussions concerning medical treatment.
Objective
To investigate the diversity of values, experiences and adaptations expressed in cancer patients VDs.
Methods
Contents of the VDs of ACPs of cancer patients who participated in a randomised control trial comparing a video intervention showing values communication between cancer patient-caregivers with usual care were analysed. Qualitative phenomenological content analysis was used to understand how participants made meaning of their lived experiences.
Results
Forty-two participants completed an ACP (37.2% response rate), with 97.6% of these completing a VD (57.1% female, mean age 72 years, 30.1% gastrointestinal cancer). Participants described diverse adjustments to frailty and adaptive coping with deteriorating functionality. Emotional and financial concerns were eased through experiencing benevolence and trust established through family and friendship bonds and reciprocation of care. Death anxiety and ambivalence were expressed concurrently with the experiential acceptance of dying. Secular and sacred rituals featured as an affirmation of their faith or beliefs.
Conclusion
Cancer patients seek to make meaning of their experiences, concurrently posturing vulnerability and resilience, despite conflicting emotions and experiences. Given that the choices people make as they approach dying relate to their most deeply held values, ACP conversations should explore how patients draw from their values and life goals to optimise their adaptations to illness.
... However, the percentage of persons with an autism spectrum disorder who received euthanasia in Belgium is double the number reported for The Netherlands (see text footnote 1, 26, 77-81). physicians to decide (4,22,(87)(88)(89)(90)(91)(92)(93)(94)(95)(96)(97). Just like the conclusion that the psychiatric illness has no prospect of improvement, also the conclusion that the resulting suffering is non-alleviable can only be reached after all reasonable evidence-based pharmacological, psychotherapeutic, and psychosocial treatments have been tried and have failed. ...
Background
Belgium is one of very few countries that legally allow euthanasia for suffering caused by psychiatric illness. In the first criminal trial in Belgium of physicians involved in euthanasia, three physicians recently faced the accusation of “murder by poisoning,” for allegedly having failed to comply with several requirements of the Belgian Euthanasia Law in granting the euthanasia request a woman suffering from psychiatric illness. Although all three physicians were acquitted, the case generated much debate among policy makers, medical professionals, and the general public.
Method
We use this trial as the starting point for a critical analysis of the adequacy of the three-level control system established in the Euthanasia Law, as it is applied in the evaluation of euthanasia requests from persons who suffer unbearably from a psychiatric illness. This analysis is based on information presented during the criminal trial as well as information on the euthanasia that was published in the press.
Results
Our analysis highlights substantial problems in the assessment and granting of the euthanasia request. The patient was euthanized without it having been substantiated that her psychiatric illness had no prospect of improvement and that her suffering could not be alleviated. The three-step control system enshrined in the Law and promoted by the Federal Control and Evaluation Commission for Euthanasia appears to have failed at each level.
Conclusion
To evaluate requests for euthanasia for mental suffering caused by psychiatric illness, the requirements of the Belgian Euthanasia Law should be complemented by mandating the advice of two psychiatrists, and face-to-face discussions between all physicians involved. In parallel with the process of evaluating the euthanasia request, a treatment track should be guaranteed where reasonable evidence-based treatments and recovery-oriented options are tried.
... der Kontrolle, (4) Gefährdung der Würde als Selbstwertgefühl, (5) Vereinsamung, (6) beeinträchtigte Qualität der Beziehungen z. B. mit Angehörigen, (7) Sinnverlust als Demoralisation und (8) Fragen angesichts des unbekannten Jenseits als Mysterium [1667]. ...
... Patients with advanced and terminal diseases experience existential distress as a result of a shortened lifespan, prognostic uncertainty, altered interpersonal relationships, and impaired physical functioning, sense of autonomy and personal control. 1 The existential challenges include the threat of impending mortality; loss and changes in appearance or function; loss of freedom of choice, control in life and self-dignity; loneliness; and search for meaning in life. 2 ...
Introduction
Managing Cancer and Living Meaningfully (CALM) is a novel, brief and manualised psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. This phase 2 trial aims to assess the feasibility and preliminary efficacy of CALM in Japanese patients with cancer.
Methods and analysis
This study is a single-arm clinical trial. All patients involved in the study are ≥18 years of age, have been diagnosed with advanced or metastatic solid-tumour cancer, and their expected survival is at least 6 months. CALM comprises three to six individual therapy sessions, each lasting approximately 45–60 min, provided over 3– 6 months. The participants will be asked to complete questionnaires at baseline (t0), 3 months (t1) and 6 months (t2). The primary outcomes are rates of completion of the intervention and of the outcome measures and improvement of depressive symptoms measured using the Patient Health Questionnaire-9 between t0 and t2. The criteria for the successful rate of completion is that at least 70% participants who participate in at least three sessions will complete measures at t2. The secondary outcomes are the improvement in scores on: (1) the Quality of Life at the End of Life-Cancer Scale, (2) the Experiences in Close Relationships scale, (3) the Death and Dying Distress Scale and (4) the Clinical Evaluation Questionnaire.
Ethics and dissemination
This study was approved by the Research Ethics Committee of The University of Tokyo, Cancer Institute Hospital of Japanese Foundation for Cancer Research and Yamaguchi University. We will conduct the study in accordance with the Declaration of Helsinki and the Ethical Guidelines for Medical and Health Research Involving Human Subjects. The results of this study will be submitted for peer-reviewed publication and presentation at local, national and international scientific meetings and conferences.
Trail registration number
UMIN000040032; Pre-results.
... Illnesses might bring limitations to the activities in life that engage us and give direction. Often illnesses heighten our awareness of our mortality (Kissane, 2012). The uncertainty connected with illness also may also confront us with the undetermined nature of our existence. ...
This paper examines the existential context of physical and mental health. Hans Georg Gadamer and The World Health Organization’s conceptualizations are discussed, and current medicalized and idealized views on health are critically examined. The existential dimension of health is explored in the light of theories of selfhood consisting of different parts, Irvin Yalom’s approach to “ultimate concerns” and Martin Heidegger’s conceptualization of “existentials.” We often become aware of health as an existential concern during times of illness, and health and illness can co-exist. The paper discusses how existential suffering in Western culture is described, to an increasing degree, as disorders or psychological deficits, and perfectionistic health goals easily can become a problem. We seek to avoid suffering rather than relate to it, with all the tension that may create. The paper argues that suffering is an unavoidable aspect of people’s experience of their lives, and actively relating to suffering must be regarded as a fundamental aspect of health. The need and usefulness of a concept of “existential health” is discussed.
... Awareness of the inevitable reality of death and its conflict with the strong desire for survival can arouse severe fear in a person [3]. Specifically, cancer patients are at high risk of death anxiety facing all kinds of challenges [4]. People with advanced cancer are close to death and 32% of them reported death anxiety [5]. ...
Purpose
This study aimed to investigate death anxiety in advanced cancer patients and identify associated factors in the context of Chinese culture.
Methods
Participants (N = 270) with advanced cancer in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of a Likert-type Templer-Death Anxiety Scale, Rosenberg’s Self-esteem Scale, Medical Coping Modes Questionnaire, the Social Support Rating Scale, and Connor-Davidson Resilience Scale. Data were analyzed in SPSS using descriptive statistics, Student’s t test, Pearson correlation test, and linear regression.
Results
Respondents returned 252 (93.33%) of the 270 questionnaires. The total CL-TDAS score was 39.56 ± 10.20. The top three items were “I fear dying a painful death” (3.59 ± 1.41), “I often think about how shortly life really is” (3.11 ± 1.33), and “1 am not particularly afraid of getting cancer” (3.09 ± 1.35). Associated factors of death anxiety (R² = .333, F = 15.756, p < .001) were the medical coping mode (resignation, confronce), self-esteem, the participants’ adult children, the patient-primary caregivers’ relationship, resilience, and the level of activity of daily living.
Conclusions
Our results demonstrate high levels of death anxiety in advanced cancer patients. Generally, patients with adult children, high self-esteem and resilience had low death anxiety. Conversely, patients with low levels of activity of daily living and high coping mode (resignation, confrontation) reported high death anxiety. We determined that associated factors contributed to reduce death anxiety. Social interventions are recommended to improve the end-of-life transition for patients and caregivers.
... The few studies available show the need of NH residents to talk about existential issues (Haugan, 2014c(Haugan, , 2014dHaugan et al., 2013;Sjöberg et al., 2018;Smedbäck et al., 2017). Lately, perception of existential suffering has become the focus of research in cancer care and palliative medicine (Gautam et al., 2019;Kissane, 2012), but is hardly studied in the NH context. Still, NH residents are daily confronted with losses, disease, a severe symptom burden, and bereavement, as well as time spent in passive activities, such as doing nothing, sleeping, and waiting, which lead to feelings of boredom, loneliness, meaninglessness, and indignity (Brownie & Horstmanshof, 2011;Slettebø et al., 2017). ...
Abstract
Background: Finding new approaches to increase health and wellbeing among nursing home (NH) residents is highly warranted. In a holistic perspective, several Norwegian municipalities have implemented the certification scheme framed ‘Joy-of-Life Nursing Home’.
Aims: In a holistic perspective on NH care, this study investigated if NH residents despite potential symptom severity experience joy-of-life. Therefore, we examined the frequency of common symptoms and the association between common symptoms and Joy-of-Life (JoL) in cognitively intact NH residents.
Methods: A cross-sectional design was employed. Using the QLQ-C15–PAL quality-of-life questionnaire, Hospital Anxiety and Depression Scale and Joy-of-Life scale, a total of 188 cognitively intact NH residents participated.
Results: Symptom severity was high; 54% reported fatigue, 52% constipation, 45% pain, 43% dyspnea and 32% insomnia, 22% reported appetite loss and 20% had nausea, while 20% had anxiety and 23% reported depressive symptoms. Nevertheless, 59% of the NH residents reported high JoL, which was significantly positively related with quality-of-life and negatively associated with anxiety and depression.
Keywords: nursing home, residents, joy-of-life, health-related quality of life, symptom severity.
... 12 13 Due to the fundamental losses and changes advanced cancer can cause, emotional pain and despair may be experienced as 'existential', similar to the distress described by existential philosophers, which arises from the finitude of life and the ramifications of existence. 14 Based on earlier reviews and conceptual literature, [15][16][17][18][19][20] we propose a taxonomy that integrates different existential concerns among patients and caregivers and links them to operationalisations of existential distress (figure 1, first and middle part). According to this taxonomy, frequently described existential concerns including fear of what will happen at death, uncertainty, unpreparedness, a sense of being a burden to others or a sense of profound loneliness can be systematically measured by clearly defined concepts. ...
Introduction:
At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients' and caregivers' specific need for and utilisation of psychosocial support for existential distress.
Methods:
This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress.
Discussion:
This study will provide comprehensive knowledge about patients' and caregivers' existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively.
Ethics and dissemination:
The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.
Trial registration number:
NCT04600206.
... 45 Death anxiety, fundamental aloneness and fear of loss of control are examples of the existential distress that is a given of our humanity. 46 The end of one's existence is characterised by a decline in health and loss of normal roles, and it can be accompanied by withdrawal from social networks and loneliness. 47 Loneliness has been defined as "an intolerable emptiness, sadness, and longing that results from the awareness of one's fundamental separateness as a human being." ...
Agency is the human capacity to freely choose one’s thoughts, motivations and actions without undue internal or external influences; it is distinguished from decisional capacity. Four well-known conditions that can deeply affect agency are depression, demoralization, existential distress, and family dysfunction. The study reviews how they may diminish agency in persons whose circumstances may lead them to consider or request euthanasia or assisted suicide. Since agency has been a relatively neglected dimension of autonomous choice at the end of life, it is argued that to respect the autonomy of individuals, it is essential to establish their agency.
... El malestar existencial se manifiesta al cuestionar el significado y el valor de su vida y si merece la pena continuar con el tratamiento 3 . Otras expresiones del malestar existencial incluyen la desmoralización (13-18%) 4 , sentir que dependen o que son una carga para los demás (16-35%) 5,6 , cambios en las metas de la vida, incertidumbre (16-92%) 5,7 , sentir que la vida no tiene sentido o propósito (40-47%) 8 , pérdida del sentido de dignidad (46%) 9 , deseo de adelantar la muerte, angustia de muerte y miedo al proceso de morir 3,10 . La evidencia vincula el malestar existencial a la presencia de sintomatología de ansiedad y depresión 4,[11][12][13][14][15] , desmoralización 4 , deseo de adelantar la muerte [16][17][18] , disminución en los niveles de CV [19][20][21][22] y malestar al final de la vida 4 . ...
Introducción:
La terapia de la dignidad (TD) es una intervención diseñada para atender el malestar emocional y existencial de las personas que enfrentan enfermedades que amenazan su vida. Aunque previamente se han realizado revisiones en población clínica, no se ha evaluado su evidencia en pacientes oncológicos.
Objetivo:
Analizar la literatura existente acerca de los efectos de la TD en ansiedad, depresión, dignidad y calidad de vida (CV) en pacientes con cáncer.
Método:
Se realizó una búsqueda PICO en las bases de datos: PubMed, PsycINFO y en la Biblioteca Digital de la Universidad Nacional Autónoma de México de enero del 2002 a diciembre del 2019 con estudios de diseño experimental o cuasiexperimental que incluyeran a pacientes oncológicos que recibieron TD.
Resultados:
De 281 artículos obtenidos, se incluyen 5 para el análisis, 4 ensayos controlados aleatorizados y un estudio con grupo control con pacientes con cáncer avanzado o terminal. En dos estudios encontraron niveles basales bajos de distrés, lo que dificultó medir el beneficio; en otros dos artículos con niveles basales de distrés se observó beneficio en ansiedad y depresión. La CV es un factor que puede influir sobre los resultados de la terapia.
Conclusiones:
La TD es una intervención benéfica, con alta satisfacción, especialmente en pacientes con malestar emocional inicial. Se requiere investigación de mayor calidad para confirmar su efecto en ansiedad y depresión y extender los resultados a otras poblaciones culturales. Se sugiere estudiar su efecto en población latina.
... Respondents felt invisible, even bystanders in their own lives (Jansson et al., 2019). Feeling depressed, experiencing loneliness and meaningless in life (Larsson, Edberg, Bolmsjö, & Rämgård, 2018) may give rise to existential suffering (Kissane, 2012) and existential loneliness (Bolmsjö, Tengland, & Rämgård, 2019;Larsson et al., 2018) in institutions. ...
Objectives
The aim of this study was to examine changes in the prevalence of loneliness over time from 2011 to 2017 in long-term care facilities; and its related factors.
Material and methods
Repeated cross-sectional studies exploring loneliness and its associated factors among residents in long-term care facilities were conducted in Helsinki, Finland in 2011 (N = 4966) and 2017 (N = 3767). Residents in temporary respite care or with severe cognitive impairment, and those unable or refusing to respond to the loneliness item were excluded. The total number of participants in this analysis was 1563 in 2011, and 1367 in 2017. In both samples, we used the same loneliness measurement by asking “Do you suffer from loneliness?” (never/sometimes/often or always). When comparing the samples in order to reduce the effect of confounding between them, we used propensity score matching. A multivariable logistic regression model explored the relationship between various characteristics and loneliness.
Results
Loneliness showed no change in prevalence over time: propensity score-adjusted loneliness was 36% in 2011 and 2017. In the multivariate logistic regression model, feeling depressed was the only independent characteristic associated with loneliness. Of the respondents who did not feel depressed, 24% suffered from loneliness at least sometimes. Among the respondents who felt depressed, the respective figure was 55%.
Conclusion
Loneliness is common in institutional settings. It remained stable, and not decreased over time. Because loneliness impairs the well-being, quality of life and health of residents, it needs to be addressed. Screening loneliness and developing interventions to alleviate it, is essential.
... Unfortunately, this perspective often causes existential distress/suffering, weakens their sense of ego integrity, and results in negative perceptions of life. Existential suffering refers to a loss of control, meaning, and purpose in life (Best et al., 2015;Kissane, 2012). It influences oneʼs attitudes toward the future, which in turn play an important role in shaping oneʼs attitudes toward the present and hopefulness about life in general (Dwivedi & Rastogi, 2016). ...
This study aimed to describe, interpret, and understand the phenomenon of ego integrity among nursing home residents using a descriptive phenomenological approach. Data were collected by conducting in‐depth face‐to‐face interviews with 18 nursing home residents with the aid of a pilot‐tested semi‐structured interview guide. The authors followed a systematic analytic procedure. Key themes and subthemes emerged when the codes were combined. The responses of the residents were classified under three themes: 1) existential well‐being, 2) future expectations, and 3) regrets regarding past life stages. The results underscored the important role of ego integrity in structuring one's life in the later years. A lack of ego integrity had resulted in negative perceptions of life, a lack of future plans, and existential suffering. The findings underscore the importance of assessing ongoing temporal changes in the ego integrity of nursing home residents and providing effective programs that enhance their sense of ego integrity.
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... Una abundante literatura aporta evidencia empírica de estos síntomas de sufrimiento existencial en pacientes oncológicos y en pacientes con otras enfermedades graves en estadio avanzado (p. ej., Ando et al., 2010;Benito, Dones y Barbero, 2016;Carrero et al., 2015;Cassell y Rich, 2020;Davies, 2012;Deal, 2011;Kissane, 2012;Mako, Galek y Poppito, 2006;Mehta y Chan, 2008;Mori, Elsayem, Reddy, Bruera y Fadul, 2012;Reynoso, Alazraki, González-Maraña, Alvarado y Pulidol, 2008;Wein, 2011). Estos síntomas incluyen aspectos físicos, psicológicos, sociales y espirituales que, en su conjunto, dan lugar a una intensa experiencia de «dolor total» (total pain), según lo denominara Saunders, pionera de los cuidados paliativos (Saunders, 1967;Centeno, Vega, López-Lara y Martínez, 1993). ...
Aunque en la actualidad padecer cáncer no implica necesariamente deterioro físico extremo, intenso dolor o muerte segura, su diagnóstico puede tener un impacto psicosocial y existencial de gran intensidad y efectos en los pacientes, especialmente en aquellos que se encuentran en un estadio avanzado de la enfermedad. El alivio del sufrimiento existencial en estos pacientes es un objetivo terapéutico de primer orden y su abordaje terapéutico ha de ser específico, tanto en sus objetivos como en sus procedimientos. El presente trabajo está motivado en la necesidad de contar con modelos para la intervención psicológica del sufrimiento existencial en el paciente oncológico en estadio avanzado que faciliten (1) la experiencia de que, a pesar del «ya» de la situación límite, la vida «todavía» tiene sentido, (2) experiencias emocionales positivas que promuevan el bienestar y la calidad de vida, y (3) el afrontamiento de la experiencia de enfermedad grave y de muerte esperada más o menos inminente, mediante el desarrollo de una actitud serena, reconciliada con la vida e integradora con uno mismo y con los demás. En relación con ello, se propone un programa de intervención, teniendo como referentes terapéuticos nucleares la psicoterapia centrada en el sentido, la psicología positiva y la práctica de atención plena.
Despite the fact that nowadays suffering from cancer does not necessarily imply extreme physical deterioration, intense pain or certain death, its diagnosis can have a psychosocial and existential impact of great intensity and effects on patients, especially in those who are in an advanced stage of the disease. The relief of existential suffering in cancer patients is a major therapeutic objective and the therapeutic approach must be specific, both in its objectives and in its procedures. The present work is motivated by the need for models for the psychological intervention of existential suffering in the advanced stage cancer patient that facilitate (1) the experience that, despite the "already" of the limit situation, life "still" has meaning, (2) positive emotional experiences that promote well-being and quality of life, and (3) coping with the experience of serious illness and expected death more or less imminent, through the development of a serene, reconciled attitude with life and integrative with oneself and with others. In relation to this, I propose an intervention program focused on meaning-centered psychotherapy, positive psychology, and mindfulness as nuclear therapeutic resources.
... Loneliness began to bother a respondent when they found out that things were no longer as they used to be or how they remembered them as being in the past: they searched for lost time but could not recapture it, the present did not offer enough and they felt that the future was shrinking. The respondents' acknowledgement of their limited lifespan and one's own finite human nature is reflected as fundamental aloneness and existential suffering (Kissane, 2012). Sophie asked: I wonder about loneliness … We're all near death and we don't need to be here very long, so why should we invest in life anymore? ...
The purpose of the study is to explore feelings of loneliness among residents in assisted living facilities in terms of how loneliness is experienced and articulated, and what specific factors are related to the experiences. The study used a mixed-method approach. We individually interviewed 13 residents twice over six months. We conducted two focus group interviews and noted our observations each time we met the respondents. Data analysis leaned on abductive reasoning. The respondents described loneliness in versatile, rich ways. It proved to be time and place dependent. It was dependent on the time of day, days of the week and seasons. Lonely time was meaningless and filled with a feeling of waiting. Loneliness was also intertwined with place. None of the respondents called their apartment home; instead they called it a hospital, even a prison. They had to spend long periods of time in their apartments against their will, and their desire to interact with other residents was not met. The respondents felt invisible. Residents’ experiences of loneliness in assisted living facilities are unique and distinctive. Time- and place-dependent experiences of loneliness act as important signals for reflection on how care practices in these facilities could be more satisfying. Loneliness should therefore be a key topic and the target of prevention and interventions.
... On ne peut donc pas opposer d'un côté souffrance physique et souffrance psychologique, souffrances qui pourraient relever de soins respectivement physiques ou psychiques, et de l'autre souffrance existentielle, qui implicitement renverrait plus à un système de pensée et de valeurs propre à celui qui l'expérimente et s'avérerait insensible à un projet de soins. Les travaux de Kissane [4], de Chochinov et al. [5], de Grassi [6] et de Robinson [7] sur la démoralisation et les ressources thérapeutiques des psychothérapies existentielles, narratives, « de la dignité » viennent illustrer comment ces dimensions sont interconnectées et comment la souffrance existentielle peut être au moins partiellement sensible à un projet thérapeutique ou à une prise en charge, en particulier lorsque ceux-ci mobilisent le support relationnel, les conditions de vie, le respect des droits du patient et son autonomie, autonomie qui ne peut être réduite à la seule possibilité de demander une sédation [8]. ...
... İkisi de multidispliner yaklaşım gerektirir bu yüzden farklı meslek gruplarından ekip üyeleri her iki bakım planında da yer alır. 9,11,12 Her iki bakım şekli de büyük çoğunlukla hastane temelli hizmet vermektedir ancak uygun durumlarda evde, bakımevinde de hizmet sağlanabilir. 13 Her ikisi de sadece hasta değil hasta ve yakınlarına yönelik yaklaşımlardır. ...
Palyatif bakım geçmişte yaşam sonu bakımıyla eş anlamlı kullanılır iken artık günümüzde
küratif tedavi sırasında veya yaşam sonu tedavi sırasında semptom azaltıcı tedavi yaklaşımı için kullanılmaktadır. Palyatif bakımdaki temel amaç hasta ve yakınlarının hayat kalitelerinin iyileştirilmesidir. Esas palyatif bakımın sunulduğu yerler hastanelerdir. Kronik ve yaşamı tehdit eden hastalıklara tüm dünyada en çok maruz kalanlar yaşlılardır. Bu nedenle palyatif bakımın asıl hedef kitlesinde yaşlılar vardır. Hospis bakımı ise bir palyatif bakım şeklidir. Ölüm sırasındaki tedaviye odaklı bir yaşam sonu bakım şeklidir. Palyatif bakım öncelikle hastanede bakım hizmeti sunarken; bakım evi veya hastanın kendi evinin koşullarında da hizmet verebilir. Hem palyatif bakım hem de hospis bakımı ölüm gerçekleştikten sonra hastanın aile ve yakınlarına yas sürecinde destek olmaya devam eder. Dünyada gelişmiş ülkelerde palyatif bakım sistemi yerleşik olmasına rağmen ülkemizde
henüz gelişmeye devam etmektedir.
Anahtar Kelimeler: Yaşlı; yaşlılar için sağlık hizmetleri; palyatif bakım; ağır hasta bakımı
ABSTRACT Palliative care used to be synonymous with end-of-life care. Nowadays, it is used for symptom-reducing treatment during curative treatment or during end-of-life treatment. The main purpose of palliative care is to improve the quality of life of patients and their relatives. The main palliative care places are hospitals. Chronic and life-threatening diseases are the oldest in the world. Therefore, the main target group of palliative care is the elderly. In both palliative and geriatric care, patients have multiple problems. For this reason, an individualized approach is required as a result of comprehensive evaluation with interdisciplinary team. Hospice care is a form of palliative
care. Hospice care is focused on treatment in the course of death. Palliative care primaril y provides hospital care; also serve in the nursing home or the patient's own home. Both forms of care providen support to the relatives of the patient during the mourning after death.
Keywords: Aged; health services for the aged; palliative care; hospice care
Neurologic illnesses present multiple challenges to patients and their families from the time of initial diagnosis and throughout their illness trajectory, including challenges related to accepting the diagnosis and its various impacts and anxiety about future living with their illness. Often patients and their families rely on their spirituality to cope with and to maintain meaning and dignity in the midst of disease. As a result, spiritual care provision is a critical component of holistic medical care to patients with neurologic illness. Spiritual care provision follows a generalist-specialist model, which requires all healthcare professionals involved in the care of patients facing serious illness to play a role in recognizing and addressing spiritual needs. This model is characterized by generalist spiritual care providers (e.g., nurses, physicians, social workers) who perform spiritual screenings through history taking. Chaplains function as specialist spiritual care providers and can address spiritual care more deeply. In addition, several developed psychotherapeutic approaches may be useful for patients with neurologic disease, and chaplains are especially trained to offer supportive spiritual care to patients with neurologic illnesses and their families and to work together with physicians and other members of the healthcare team as part of a holistic approach to care.
Transplant candidates and recipients struggle with a variety of existential concerns that they will bring to mental health professionals, including grief of lost expectations and experiences, meaning of life, facing one’s mortality, changes in relationships and roles, and sense of dignity. This chapter will discuss some of these themes centered on a patient case and introduce existential therapy modalities and practical interventions to create a safe space for the patient and provide support during these challenging times.
Meaning making is an integral part of psychosocial coping processes of resilience. Through appraisal, reappraisal, interpretations, and other meaning-making processes, humans understand the world and the self including the significance of stressful events such as a cancer diagnosis or recurrence. Meaning-making strategies strive to make sense of the world or come to terms with new clinical realities that allow for reordered priorities, new meanings, and or a renewed purpose in life. For many patients with cancer and their family caregivers, the ability to find meaning facilitates positive adjustment, acceptance, and personal growth. This chapter examines the theoretical underpinning and scientific evidence of seeking meaning and meaning made. Based on findings from meta-analyses and RCTs of meaning-making/meaning-made interventions, various nursing interventions to facilitate meaning in individuals with cancer are considered.KeywordsMeaning in lifeGlobal meaningsSituational meaningsMeaning-focused cognitive strategiesPersonal growthAcceptanceComing to terms with stressor eventsSearch for meaningMeaning foundMeaning-making interventionsLife reviewIntrusive ideationDeliberate rumination
The diagnostic phase is increasingly distinguished by “prehabilitation” interventions to optimize the patient’s overall physical and psychosocial clinical condition in readiness for upcoming treatment. Prehabilitation generally consists of preparatory interventions to strengthen physical fitness and psychological resilience. Psychosocial content tends to include tailored cancer-related information, use of relevant coping skills, and promoting supportive patient/caregiver relationships. Prehabilitation interventions, in essence, launch the start of a continuous clinical approach to maintain or strengthen the healing, resilience and health of the patient and family caregiver across the treatment and recovery continuum. This chapter explores the impact of a cancer diagnosis on the whole individual and their loved one and reviews the current goals of prehabilitation programs. Based on findings from meta-analyses and RCTs, the chapter suggests psychosocial nursing interventions to foster relevant cognitive-behavioral coping strategies, enhance caregiver-patient support, and promote healthy lifestyle behaviors as a function of the patient’s clinical status. Self-management knowledge and related skills as well as strategies to clarify and support patient expectations about treatment outcomes (nocebo/placebo effects) are also discussed.KeywordsPrehabilitation phaseClinical expectations (nocebo/placebo effects)Distorted beliefsCognitive-behavioral strategiesProblem-focused copingEmotion-focused copingMeaning-makingDeliberate ruminationSelf-managementSupportive relationshipsExerciseDiet and nutritionNurse-patient relationshipCancer-related treatmentCancer-related surgery
Providing end-of-life care within the cultural context of a Filipino patient in the United States is a complex process for clinicians, patients, and their families. An inclusive approach is crucial, especially because a significant proportion of patients belong to minority groups such as Filipinos, who represent the fourth largest group of immigrants in the United States as of data available in 2019. The case provided in this paper highlights the importance of family, religion, and finances in guiding the best possible way of providing end-of-life care for Filipino patients with cancer. At the end of this review, we discuss concrete action points that may give a non-Filipino physician a deeper understanding of end-of-life care for Filipinos.
Objectives
This study investigated the possible correlation between emotional distress linked to dignity and dysfunctional temporal orientations in the oncological context.
Methods
We conducted an exploratory study between December 2020 and February 2021, referring to a sample of 107 patients in active treatment for solid tumors belonging to the Oncology Department of the Fondazione Poliambulanza (Brescia, Italy). We administered two self-report questionnaires: the Patient Dignity Inventory (PDI-IT) (Italian version, Grassi L, Costantini A, Caruso R, et al. (2017) Dignity and psychosocial-related variables in advanced and nonadvanced cancer patients by using the patient dignity inventory-Italian version. Journal of Pain and Symptom Management 53(2), 279–287), as a measure of perceived level of dignity, and the Italian version of the Zimbardo Time Perspective Inventory scale (ZTPI) (Zimbardo PG and Boyd JN (2009) Il paradosso del tempo. La nuova psicologia del tempo che cambierà la tua vita . Milano: Mondadori), as a measure of the experiential dimensions of time, such as past, present, and future.
Results
From the PDI-IT emerged that our sample reported high levels of physical and psychological distress. Furthermore, we founded higher distress in patients under 55 years ( p = 0.04) and lower distress in retired patients ( p = 0.01). The ZTPI showed in our patients prevailing orientations to the past-positive (39.3%) and the future (37.4%). We noticed a gender difference: men were mainly oriented to the future while women to the past-positive. Moreover, married subjects reported a prevalent orientation to past-positive and the future. Finally, data analysis found moderate positive correlation between the “Negative Past” dimension of ZTPI and high levels of physical ( r = 0.203, p = 0.03) and psychological distress ( r = 236, p = 0.01).
Significance of results
In our experience in oncology, dignity and time perspective play a central role as indicators of the quality of care. Our study shows the importance of a treatment path that integrates the constructs of Dignity and Time Perspective to favor a better psychological adaptation.
Questions of meaning may seem more properly suited to the spheres of religion or philosophy; yet physicians certainly witness some of the greatest sufferings of their patients’ lives, and through this suffering, many patients look to their doctors not just for treatments but for answers. In this essay, the author highlights an exchange between patient and doctor in Thomas Wolfe’s Look Homeward, Angel, to argue that physicians need not have ready made answers about life, meaning, or spirituality, but should indeed provide comfort and support when their patients ask: “What’s it all about?”
Objective
To explore how patients with advanced cancer, their families, and palliative care clinicians communicate about existential experience during palliative care conversations.
Methods
We analyzed data from the Palliative Care Communication Research Initiative (PCCRI) – a multisite cohort study conducted between 2014-2016 involving hospitalized adults with advanced cancer who were referred for inpatient palliative care consultations at two academic medical centers. We used a qualitative descriptive approach paired with inductive content analysis to analyze a random subsample of 30 patients from the PCCRI study (contributing to 38 palliative care conversations).
Results
We found existential communication to be woven throughout palliative care conversations, with key themes related to: 1) time as a pressing boundary; 2) maintaining a coherent self; and 3) connecting with others.
Conclusion
Communication about existential experience is omnipresent and varied in palliative care conversations between individuals with advanced cancer, their families, and clinicians.
Practice implications
Clinicians can recognize that discussion of time, routines of daily life, and relationships in the clinical context may hold profound existential relevance in palliative care conversations. Understanding how patients and families talk about existential experience in conversation can create opportunities for clinicians to better meet these needs.
Although research shows that there is a silent crisis in men's mental health, there remains surprisingly little literature on the subject. This important textbook provides up-to-date, practical and evidence-based information on how mental health issues affect men and the way treatments should be offered to them. Key opinion leaders from across the globe have been brought together to offer much-needed understanding about the socio-politico-economic context of men's lives today as well as ethnic and cultural effects and genetic, epigenetic and gene-environment interaction. Clinically focused chapters cover topics such as suicide and self-harm, violence, sociopathy and substance misuse in men; depression, anxiety and related disorders; and psychotic and cognitive disorders. The book uses a lifespan approach to assessment and treatment, accounting for age and developmental phase. An invaluable source of information for clinical specialists and trainees in psychiatry, psychology, and mental health nursing as well as social workers, and occupational therapists.
Background:
Existential distress is a widely used concept used in describing cancer patients. However, this concept is vague and has failed to achieve a consensus. The lack of a recognized conceptual framework could hinder future research on existential distress.
Objective:
The aim of this study was to clarify and analyze the concept of existential distress in cancer patients.
Methods:
The Walker and Avant concept analysis approach was applied.
Results:
For cancer patients, the concept of existential distress included 5 core attributes: (a) lack of meaning; (b) loss of autonomy; (c) loss of dignity; (d) hopelessness; and (e) death anxiety. Existential distress is a key factor causing poor quality of life, a poor emotional state, demoralization, and even suicide. It is often underpinned by uncontrolled physical pain, serious psychological morbidity, and a perceived sense of being a burden on others.
Conclusion:
The concept analysis provides a theoretical framework for healthcare providers to better understand existential distress in cancer patients, to improve patient well-being.
Implications for practice:
On the basis of the antecedents of this concept, cancer patients experiencing uncontrolled physical pain, severe psychological morbidity, and a perceived sense of being a burden on others are at a high risk of existential distress. These factors should be eliminated in a timely manner to prevent cancer patients from being caught in a state of existential distress. The 5 defining attributes and empirical referents of this concept could be used to develop tools to screen for existential distress in cancer patients and distinguish it from similar concepts.
Background:
Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
Case description:
Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
Conclusion:
Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
Cancer rehabilitation addresses physical impairments and progressive disablement at all stages of cancer diagnosis and treatment. Although a majority of impairments are directly related to cancer or its treatment, the rapid aging of the population has led to more patients presenting with functional morbidity at the time of cancer diagnosis. As a consequence, cancer rehabilitation has become integral to the management of geriatric oncology patients. Recent expansions have additionally occurred to address patients' rehabilitation needs during the survivorship, palliative, and prehabilitation phases of cancer. Cancer presents with a staggering array of prognoses, differential treatment approaches, and patterns of metastatic spread. Against the complex backdrop of shifting treatments, toxicities, and prognoses, patients with cancer generally experience multiple, rather than discrete, impairments. Symptom burden, particularly pain, is also a key consideration in the development of individualized rehabilitation plans. A patient's functional goals and rehabilitative potential should align with these defining aspects of their cancer. In addition to acute cancer- and treatment-related impairments, many patients experience late effects that may present years after the completion of cancer treatment. Impairments that affect neuromuscular integrity are common, ranging from joint contractures and pathologic fractures to malignant spinal cord compression. Conventional rehabilitation approaches can benefit affected patients but should be adapted as required for patients' prognoses and symptoms. Motivation and meaning are also important considerations given the potentially terminal nature of patients' disease. Some cancer populations (e.g., breast, head and neck, sarcoma, and bone marrow transplantation) have unique needs such as lymphedema and limb loss. Validated physical performance and self-report measures should be used to assess relevant functional domains in order to individualize therapy and evaluate treatment response.
Background
Palliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians’ perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.
Aim
To gain deeper insight into physicians’ perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.
Design
Systematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.
Data sources
Seven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians’ perceptions of PS-ES.
Results
The search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians’ perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.
Conclusions
To date, there is still no consensus on physicians’ perceptions of PS-ES. Further research is necessary to understand factors that influence physicians’ perceptions and philosophical-ethical presuppositions underlying this perceptions.
The care of dying patients as a problem in the United States cannot be well understood apart from understanding the way in which American culture has responded to the problem of death. This country seems unusual among developed countries in its passion to conquer death, often acting as if death were simply one more disease to be overcome. American medicine has been influenced by this background culture, while adding some idiosyncratic features of its own. A powerful attraction to technology, a fear of malpractice litigation, and a fundamental ambivalence about the response physicians should have to death help to explain why the care of dying patients has been so difficult, so controversial, and so troubling to both the medical and the lay communities.
Several studies have been conducted examining the notion of dignity and how it is understood and experienced by people as they approach death.
The purpose of this study was to use a quantitative approach to validate the Dignity Model, originally based on qualitative data.
Themes and subthemes from the Dignity Model were used to devise 22 items; patients were asked the extent to which they believed these specific issues were or could be related to their sense of dignity.
Of 211 patients receiving palliative care, "not being treated with respect or understanding" (87.1%) and "feeling a burden to others" (87.1%) were the issues most identified as having an influence on their sense of dignity. All but 1 of the 22 items were endorsed by more that half of the patients; 16 items were endorsed by more than 70% of the patients. Demographic variables such as gender, age, education, and religious affiliation had an influence on what items patients ascribed to their sense of dignity. "Feeling life no longer had meaning or purpose" was the only variable to enter a logistic regression model predicting overall sense of dignity.
This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient's sense of dignity. Sensitivity to these issues will draw care providers closer to being able to provide comprehensive, dignity conserving care.
This book provides clinicians with practical and evidence-based guidelines to achieve effective, patient-centred communication in the areas of cancer and palliative care. It breaks communication down into key modules that cover the life-cycle of cancer care and includes coverage of diagnosis and treatment including clinical trials, empathic support in response to distress, transition to survivorship or palliative therapies, discussion of prognosis, conduct of family meetings, and care of the dying. Complementary training of cancer patients in their communication with the doctor completes the interactive dyad. The art of teaching, impact of gender and power in the consultation and the ethical context are carefully considered. Special communication challenges include discussion of genetic risk, rehabilitative and salvage surgery, promotion of treatment adherence, unanticipated adverse outcomes, intercultural issues, and fertility and sexuality. The value of decision aides, question prompt lists, audio-recording of consultations and use of the internet is illustrated. Theoretical models are examined from the medical school to the highly specialized practice, facilitation training and actor training are made explicit, and international approaches to communication skills training are compared and contrasted. Finally, research tools that assist in coding cancer consultations, evaluating training courses, and employing mixed methods in studies aid the reader in providing clear and sensitive communication when handling challenging situations whilst treating cancer sufferers and palliative care patients.
An increasingly important concern for clinicians who care for advanced cancer patients is their spiritual well-being and sense of meaning in the face of death. The ability to sustain a sense of meaning is significantly associated with important elements of end-of-life despair, such as hopelessness, depression, desire for hastened death and suicidal ideation. Few interventions have been developed specifically for terminally ill patients, and those who have rarely address spiritual well-being and meaning as primary outcomes. In response to this need, we developed Meaning Centered Group Psychotherapy (MCGP), an eight-session group psychotherapy intervention to help patients with advanced cancer sustain or enhance a sense of meaning. MCGP has been shown, in a randomised controlled trial, to significantly improve spiritual well-being and a sense of meaning, and diminish anxiety and desire for death. MCGP appears to be a beneficial intervention for emotional and spiritual suffering in advanced cancer patients.
OBJECTIVES: To evaluate the usefulness of a clinical scheme to classify older decedents to better understand the issues associated with healthcare use and costs in the last year of life.
DESIGN: We analyzed Medicare claims data for a random sample of 0.1% of all Medicare beneficiaries with expenditures between 1993 and 1998. This sample yielded 7,966 deaths.
SETTING: Medicare claims data.
PARTICIPANTS: Medicare beneficiaries.
MEASUREMENTS: We classified decedents into groups representing four trajectories at the end of life: sudden death, terminal illness, organ failure, and frailty.
RESULTS: Ninety-two percent of decedents were captured by the profiling strategy. The four trajectory groups had distinct patterns of demographics, care delivery, and Medicare expenditures. Frailty was a dominant pattern, with 47% of all decedents, whereas sudden death claimed only 7%; cancer claimed 22%, and organ system failure, 16%.
CONCLUSIONS: The clinical scheme to classify decedents appears to fit most decedents and to form groups with substantial clinical differences. Acknowledging the differences among these groups may be a fruitful way to evaluate expenditures and develop strategies to improve care at the end of life.
Pain is a complex, multidimensional perception with affective as well as sensory features. In part, it is a somatically focused negative emotion resembling perceived threat. Suffering refers to a perceived threat to the integrity of the self, helplessness in the face of that threat, and exhaustion of psychosocial and personal resources for coping. The concepts of pain and suffering therefore share negative emotion as a common ground. Examination of the central physiological mechanisms underlying pain, negative emotional arousal, and stress helps clarify the physiological basis of suffering and the causal influences of persistent pain and other stressors. Central mechanisms involve both limbic processing of aversive stimulation and disturbance of the hypothalamo-pituitary-adreno-cortical axis with consequent biological disequilibrium. The palliative care specialist can address suffering proactively as well as reactively by treating potentially chronic pain and symptoms aggressively and promoting the psychosocial well-being of the patient at every opportunity.
This article describes the interplay among theory, research and practice regarding the maintenance of psychological well-being during serious illness. The ideas emerged from two independent lines of work, one that evolved through clinical practice within the medical model, the other that evolved through theory and field research within a behavioral science model. Each of these lines of work independently points to the importance of focusing on psychological well-being and the coping processes that support it, as a complement to the traditional focus in both the medical and behavioral sciences on psychiatric symptoms. This article describes a theoretical framework for the discussion of psychological well-being during serious illness. Then, this framework is used to define variables that research indicates contribute specifically to psychological well-being during serious illness, and finally, based on theory and research, a therapeutic program is described for patients with serious illness. The goal of this paper is to encourage researchers and clinicians to give as much attention to the development and maintenance of psychological well-being in the face of serious illness as they do to the etiology and treatment of psychiatric symptoms.