Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people.
Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding.
Methods: Using a case to illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19.
Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.
Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.
Objective: Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.
Method: The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).
Results: Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%). Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).
Significance of results: There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.
INTRODUCTION: The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.
OBJECTIVE: To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).
METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.
RESULTS: Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.
SIGNIFICANCE OF RESULTS: The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified "best practices" for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.
OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff.
METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach.
RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care.
CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.
BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings.
OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects.
METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress.
RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021.
CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one’s life was important.
CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers.
OBJECTIVE: To determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end-of-life.
METHODS: Sample dyads included a mix of patients residing at home, in nursing homes, long term care, and hospice. Diagnoses included Amyotrophic Lateral Sclerosis (ALS) (n=75), Chronic Obstructive Pulmonary Disease (COPD) (n=52), End Stage Renal Disease (ESRD) (n=42); and institutionalized, cognitively intact frail elderly (n=49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care (SISC), and Graham and Longman's 2-item Quality of Life Scale.
RESULTS: Concordance was less than 70% for 7 of the 25 PDI items, with the lowest concordance (65.1%) for the item "Not being able to continue with my usual routines". For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the SISC and Quality of Life Scales, the trend toward family members over-reporting patient distress and poor quality of life continued.
CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step towards minimizing patient and family burden at end-of-life.
BACKGROUND: Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other.
AIM: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement.
DESIGN: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods.
SETTING/PARTICIPANTS: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada.
RESULTS: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach.
CONCLUSION: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.
BACKGROUND: Bill C-14 allows for medical assistance in dying (MAID) for patients who have intolerable physical or psychological suffering that occurs in the context of a reasonably foreseeable death. In Canada, psychiatrist support for MAID on the basis of mental illness and beliefs influencing level of support are unknown. The objectives of this research were to 1) determine if psychiatrists are supportive of MAID under certain conditions and on the basis of mental illness and 2) determine what factors are related to psychiatrist support for MAID on the basis of mental illness.
METHODS: This cross-sectional study was conducted among 528 psychiatrists in Canada using an online survey platform (February 19 to March 11, 2016).
RESULTS: The response rate was 20.9% ( n = 528). Most psychiatrists supported the legalisation of MAID in some circumstances (72%); however, only 29.4% supported MAID on the basis of mental illness. Factors correlating with decreased support for MAID for mental illness were the belief that MAID for mental illness would change the psychiatrists' commitment to their patients through enduring suffering, having a personal faith, and having had past patients who would have received MAID for mental illness were it legal but instead went on to recover.
INTERPRETATION: This study found that most psychiatrists do not support the legalisation of MAID for mental illness, despite being quite supportive of MAID in general. Objections seemed to be based upon concern for vulnerable patients, personal moral objections, and concern for the effect it would have on the therapeutic alliance.
Les auteurs cherchent notamment à clarifier ce qu'on entend par la dignité à la fin de la vie et ce qui la menace. Un modèle de dignité est proposé à partir duqel des interventions peuvent être dérivées.
Quel sens les professionnels de santé doivent-ils donner aux soins qu'ils prodiguent à leurs patients lorsqu'ils sont confrontés au désepoir ou à l'apparente absurdité d'une fin de vie? C'est à cette question que les intervenants de ce symposium ont tenté de répondre. Les textes ou les résumés de leurs interventions suivantes sont présentés : "Will to live, will to die (désir de vivre, désir de mourir)"(p. 95) et "Dignity conserving therapy (un traitement qui préserve la dignité)" (p. 104) du Docteur Harvey Max Chochinov, "La guérison est-elle encore possible" du Docteur Eckrhard Frick (p. 96-99), "Soigner, un acte qui implique au delà du soin ?" de Michel Fontaine (p. 100-101) et "Dignité et fin de vie : de quelle dignité parlons-nous ?" de Jacques Ricot (p. 102-103). Les interventions de ce symposium sont présentés par Claudia Mazzocatto.
Voici un résumé de l'article éponyme paru dans le trente-septième volume du "British Medical Journal" datant de juillet 2007 (pages 184 à 187). Il présente les quatres composantes détaillées en chapitres de la démarche A.B.C.D applicable à la préservation de la dignité du patient dans les soins : Attitudes, Comportements (Behavoiurs), Compassion, Dialogue visant à connaître et à reconnaître le patient.
L'accompagnement spirituel des patients en fin de vie est étudié à travers une revue de littérature sur les études qui se sont développées sur le sujet au cours de ces dernières années et qui ont mis en évidence plusieurs thèmes. Ce sont d'abord les questions relatives à la spiritualité dans les soins palliatifs selon la perspective des patients, puis des soignants. La réflexion porte ensuite sur la distinction entre souffrance existentielle ou spirituelle. En ce qui concerne les interventions, les discussions sur les personnes (soignants, aumôniers, aidant naturels) qui peuvent prendre en charge cet accompagnement et les différentes modalités qu'il peut prendre. Enfin des recommandations pour de futurs travaux de recherche sont tirées de ces données.
L'euthanasie et le suicide assisté sont des débats de société récurrents. Cette étude veut déterminer combien de malades en fin de vie expriment le désir de mourir, dans quelles circonstances et si cette demande est réitérée dans le temps. La corrélation entre une demande de mort et des troubles psychiatriques est également un critère étudié. Les observations concluent à une association nette entre demande de mort et dépression chez les mourants.
A partir de la littérature portant sur le coût de soins en fin de vie, cette étude analyse et compare les coûts associés aux traitements de fin de vie et à différents modèles de soins palliatifs. Selon les auteurs, il apparaît que le coût des soins en fin de vie est considérable et il augmente en fonction de l'éloignement du malade de son domicile ; les économies liées aux soins palliatifs peuvent être attribuables au fait que la mort des malades est imminente, l'argent que dépense les familles pour le maintien des siens en fin de vie est considérable, et certains traitements de fin de vie onéreux sont en fait de peu de secours aux malades en phase terminale.