En mars 2015, Naja Marie Aidt a perdu son fils de vingt-cinq ans, Carl, dans un tragique accident. Le livre qu'elle a écrit fait la chronique des premières années qui ont suivi cet appel téléphonique qui l'a dévastée en ta main, que j'embrassais avec ma bouche vivante et chaude". tant que mère et en tant que femme. C'est à la fois un récit sobre de la vie après la perte d'un enfant ? la façon dont le chagrin change le rapport à la réalité, aux proches, au temps ? et une exploration de la puissance de la langue et de la littérature, à partir de nombreux textes qui évoquent le deuil, la perte et l'amour.
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
AIMS AND OBJECTIVES: To describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.
BACKGROUND: Nurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.
DESIGN: A qualitative interview study guided by Interpretive Description using the COREQ checklist.
RESULTS: Fifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.
DISCUSSION: The depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.
CONCLUSION: Medical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.
RELEVANCE TO CLINICAL PRACTICE: There is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.
The COVID-19 pandemic has disproportionately affected older adults, not only through greater risk of illness and death but also by exacerbating underlying distress related to aging and mortality. Older adults' struggles with loneliness, fear of dying, and the sequelae of untreated medical conditions are viewed through the lens of anticipatory grief, and coping and treatment strategies are offered.
Objectives: To investigate the associations between EOLD and experiences of the death of and/or care for a loved one and other factors.
Methods: Data from a nationwide anonymous questionnaire survey of public attitudes toward end-of-life medical care, conducted in December 2017 in Japan, was used. Participants were randomly selected from the general population (age = 20 years), and respondents who completed the questionnaire were analyzed (respondents: n = 836; effective response rate: 13.9%). Respondents were divided into two groups based on their experience of EOLD: those who had engaged in EOLD and those who had not. The main predictors were the experiences of the death of and care for a loved one. Multivariable logistic regression analyses were performed.
Results: Of the 836 respondents (male: 55.6%, aged 65 and over: 43.5%), 43.7% reported their engagement in EOLD. In the analyses, “having experiences of caring for a loved one” was associated with EOLD compared with never having experiences of caring (odds ratio 1.88, 95% confidence interval 1.35-2.64). However, having experience of the death of a loved one had no association.
Conclusion: For healthcare providers, it may be worth recognizing that the care experience of their patient’s caregiver might affect the caregiver’s own EOLD in the future.
BACKGROUND: When death ends a life, the impact of caring for person who suffered a period of illness or disease continues for significant others who are left to grieve. They should be offered support to avoid complicated grief. This can be provided in different ways and individually or in groups. This study aims to describe significant others' experiences of participation in bereavement groups.
METHODS: Ten bereavement groups that each met five times offered support for the significant others of deceased loved ones who had been cared for by a palliative-care team. After the five meetings, the grieving members (n = 46) completed written comments about the role of the groups; they also commented one year after participating (n = 39). Comments were analyzed with qualitative content analysis with a directed approach using the theory of a good death according to the 6S’s: self-image, self-determination, social relationships, symptom control, synthesis and summation, and surrender.
RESULTS: Bereavement groups were found to be a source for alleviating grief for some significant others, but not all experienced relief. Moreover, grief was found to persist during participation. Another finding involved the impact of the role of the palliative home-care team on bereavement support. To evaluate the experience of participating in a bereavement group, the use the 6S's as a model was a strength of the analysis. Bereavement groups could enhance the self and offer relief from grief. Participation was described as social relationships that offered a sense of coherence and understanding in grief. The effects of participation were more meaningful close to the loss and could lose efficacy over time. Bereavement support provided before a loved one's death was seen as valuable.
CONCLUSION: Overall, the bereavement groups eased the grief of significant others close to the death of their loved one. However, moving forward, several of the significant others were not sure that their participation eased their grief. To identify persons who may remain in a state of complicated grief, a routine of planned contacts with the bereaved should begin before death and be followed up later than six months after the death of a loved one.
AIMS AND OBJECTIVES: To describe nurses' experiences of palliative care for older people with advanced dementia living in residential aged care units.
BACKGROUND: Dementia is a global health problem and the number of older people with dementia who need palliative care is increasing. Previous research has revealed that care for older people with dementia in the final stage of life is usually complex. However, little is known about how nurses experience palliative care for older people with advanced dementia living in residential aged care units.
METHOD: Nine individual, semi-structured face-to-face interviews with nurses working in residential aged care units for older people with advanced dementia in palliative care in western Sweden were analysed using qualitative inductive content analysis. The COREQ checklist was followed.
RESULTS: The nurses considered that palliative care for older people with advanced dementia is a complex and challenging form of care. In particular, they identified three challenges that must be met: developing specialised knowledge and skills, developing teamwork as a working method, and creating a caring relationship.
CONCLUSIONS: The results of our analysis indicate that if nurses are aware of and understand that the challenges are essential for 'joining all the pieces together', the palliative care for older people with advanced dementia may become a positive experience for nurses and may increase their sense of satisfaction and security in their professional role.
RELEVANCE TO CLINICAL PRACTICE: For the palliative care to be successful the nurses need to 'join all the pieces together', i.e. succeed in developing specialised knowledge and skills, developing teamwork as a working method, and creating a caring relationship to establish a person-centred care with the older person with advanced dementia and with his or her relatives.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
While the strict regulations in hospital in Hong Kong effectively controlled the
outbreaks of COVID-19, they caused challenges in the care of our hospitalized cancer patients. Four clinical cases based on true encounter during the COVID-19 period with mitigations were summarised. These four cases reflected the unanticipated impacts of the extreme measures and
highlighted the deficiencies of our existing system. The pandemics offered us opportunities to explore new ways to improve our cancer care, especially concerning the psychological support to both patients and caretakers.
CONTEXT: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).
OBJECTIVES: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.
METHODS: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006-2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multi-stage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.
RESULTS: 110/114 parents responded to open-ended items; 63% (n=69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) prior to death. 71% (n=78/110) had palliative care involvement and 65% (n=69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond 'readiness' for their child's death. Three domains emerged that contributed to parents' lack of preparedness: (1) chronic illness experiences; (2) pretense of preparedness; and (3) circumstances and emotions surrounding their child's death.
CONCLUSIONS: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond 'readiness.' More research is needed to identify supportive elements among parents facing their child's EOL.
BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Background/Objective: Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.
Methods: Cases of non-traumatic ICH were enrolled from three hospitals (September 2015–December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0–100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0–100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.
Results: A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5–95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0–31.3).
Conclusions: Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.
Background: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis.
Aim: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis.
Design: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n).
Setting/participants: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10).
Findings: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible.
Conclusion: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.
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.
Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences.
Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews.
Setting: Palliative and hospice care.
Population: Full-text abstraction of 84 articles, identifying 16 articles.
Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report).
Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results.
Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.
Aims and objectives: To explore nurses’ experiences and perspectives on discharge collaboration when patients receiving palliative care for cancer are discharged home from hospitals.
Background: Patients receiving palliative care for cancer experience multiple transitions between the hospital and their home. Poor discharge collaboration is a major cause of preventable hospital readmissions. Collaborative discharge planning could improve the care for these patients outside the hospital setting. Previous research has mostly been conducted in noncancer populations. Further research regarding both home care nurses’ and hospital nurses’ perspectives on care transitions is required.
Design: A qualitative study with descriptive and explorative design.
Methods: Data were collected through 10 individual, semi-structured interviews of nurses working at two oncology wards at a university hospital and home care services in four municipalities within the hospital's catchment area. Data were analysed using systematic text condensation. COREQ guidelines were adhered to in the reporting of this study.
Results: Three categories emerged from the data analysis: lack of familiarity and different perceptions lead to distrust; inefficient communication creates a need for informal collaboration; and delayed discharge planning challenges collaboration.
Conclusions: The nurses lacked an understanding of each other's work situation, which created distrust, misunderstandings and misconceptions regarding each other's abilities to care for the patient. This led to inefficient communication, relying on individual knowledge, informal communication and personal networking. Delays in the discharge planning resulted in poorly prepared discharges often lacking necessary equipment and documentation.
Background: Nurse graduates (NGs) are ill prepared when faced with patient death and dying, despite receiving educational preparation on end-of-life (EOL) care in their prelicensure nursing programs.
Method: This qualitative descriptive study included a convenience sample of NGs (n = 20) who experienced a first adult patient death during their first 18 months of practice at a large teaching hospital with an extensive NG transition program, including preceptor-guided orientations, nurse internship programs, and nurse residency programs.
Results: Six major themes described the NG experience: Navigating the Process, Not Prepared, Support, Missed Opportunities, Preparing NGs for Death and Dying, and Guiding NGs Through Practice. Critical gaps in preparation were evident across all themes.
Conclusion: Results of this study suggest specific opportunities for improvement of NGs' readiness to effectively care for patients and families in EOL situations by increasing their exposure to death and dying experiences before graduation and during their first year of practice.
Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process.
Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships.
Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents.
Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.