Purpose: Tai Chi is increasingly being used as a complimentary therapy in hospice care to help patients self-manage multiple and complex health needs. However, currently there is limited understanding of Tai Chi from patients’ perspective, including what participation in this mindfulness based movement (MBM) exercise means to their experiences of living with an advanced, incurable disease. The purpose of this study was to explore outpatients’ lived experiences of hospice-based Tai Chi in relation to mindfulness.
Methods: 19 participants (15 females; 4 males, aged between 50 and 91 years old) with a range of advanced, incurable diseases (cancer, COPD, pulmonary fibrosis, pulmonary arterial hypertension) who attended day therapy at a local hospice took part in Tai Chi sessions. Using a focused ethnographic approach, multi-methods including 17 semi-structured interviews (averaging 40 min), participant observations (equating to 200 h spent in the day therapy unit), and informal conversations were used to collect data over a 6 month period. Data was analysed using a thematic framework approach.
Results: Four main themes were constructed that demonstrated participants’ lived experiences of mindfulness during participation in hospice-based Tai Chi sessions. Main themes included: (1) mind-body respite; (2) being present with others; (3) tranquil and therapeutic atmosphere and; (4) physical limitations.
Conclusion: Tai Chi may be an important therapeutic strategy for helping patients with advanced, incurable disease experience mindfulness. The findings of this study support the use of MBM exercises such as Tai Chi as a non-pharmacological adjunct to conventional treatments within palliative care settings.
Background: Little attention has been paid to the ways in which nurses personally experience, understand and assign meaning to providing palliative care.
Aim: A qualitative study of four nurses working with patients in the terminal phase in a hospital in Mexico was conducted to understand their lived professional experiences and relationships with death.
Methods: Four interviews were analysed using the Greimasian actantial-semiotic model. Actants were categorised by narrative role and their actions were analysed. The grammatical features of the narration were also examined.
Findings: Nurses sought a good death for the patient, which they typically achieved, and spiritual peace for themselves, which they often did not. Nurses placed a high value on personal, social and professional recognition for their work. The philosophical themes affecting nursing as a vocation that emerged included life and death, truth and honesty and the role of God and the family. These professional values were often contradictory, and these dilemmas should be addressed in professional training and support.
PURPOSE: International health electives (IHEs) provide numerous educational benefits; potential harms are less well understood. One potential harm is trainee distress associated with increased patient death during IHEs. The purpose of this study was to explore residents' and fellows' IHE experiences with patient death.
METHOD: The authors used applied thematic analysis to explore residents' and fellows' IHE experiences with patient death. The Mayo International Health Program supports IHEs from all specialties across three Mayo Clinic sites. Data were collected and analyzed in two steps. First the authors collected, coded, and analyzed narrative reflections from 43 postrotation reports gathered in 2001-2017 and identified themes relating to experiences with patient death. Second, in 2016-2017 the authors conducted semistructured interviews with six previous participants to refine thematic analysis.
RESULTS: Participants described impacts of experiencing increased patient death and identified themes in two domains: difficult experiences with patient death and potential interventions to help residents process their experiences. They identified four themes illustrating why these experiences were difficult: lack of preparation for increased exposure to death, lack of closure, consequences of limited resources, and differences in cultural beliefs regarding death. While pretrip preparation for dealing with death was viewed as important, trainees identified support during and debriefing after IHEs as additional important interventions.
CONCLUSIONS: Given the popularity of IHEs, residency programs should consider the effect on trainees of increased exposure to patient death. Study findings can inform IHE preparation, support, and debriefing to minimize distress associated with witnessing patient deaths on IHEs.
BACKGROUND AND OBJECTIVES: Transitioning to a nursing home (NH) is a major life event for 1.4 million NH residents in the United States. Most post-acute NH admissions plan for rehabilitation and discharge home, but with nearly 70% of NH residents being palliative care (PC) eligible, many evolve into long-term placements secondary to poor health and associated decline in function and/or cognition. This article describes the perceptions of NH PC-eligible residents and families transitioning to life in a NH.
METHODS: Residents at 3 NHs in Northern California (N = 228) were screened for PC eligibility. A convenience sample of PC-eligible residents and their family members (n = 28) participated in qualitative interviews that explored the experience of living as a NH resident with serious illness. Data were analyzed using grounded theory methodology.
RESULTS: Our study provides insights into the experiences of transitioning to a NH from the perspectives of PC-eligible residents and their families. These data describe how PC-eligible residents and their families experienced disempowerment as they perceived being left out of decisions to go to a NH, loss of autonomy once at the NH, dealt with the realization that they would not be going home, and described perceived barriers to going home.
DISCUSSION AND IMPLICATIONS: The inclusive and person-centered model of care that PC provides naturally empowers residents and family members. Adequate provision of PC services, together with changes in policy related to NH culture and benefit management, could improve the experience of transitioning to a nursing home.
BACKGROUND: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC).
OBJECTIVE: To identify common themes and topics of primary family caregivers' lived experiences with HBPC when taking care of terminally ill family members.
METHODS: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: A total of 22 primary family caregivers participated in the study. "Wholeheartedly accompanying one's family to the end of life at home" was the core category. Six main themes describing caregivers' experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience.
CONCLUSIONS: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers' preparedness for HBPC, including biopsychosocial and cultural considerations.
Background: Medical Assistance in Dying (MAiD) was legalized in Canada in June, 2016. The Canadian government's decision to legislate assisted dying, an approach that requires a high degree of obligation, precision, and delegation, has resulted in unique challenges for health care and for nursing practice. The purpose of this study was to better understand the implications of a legislated approach to assisted death for nurses' experiences and nursing practice.
Methods: The study used a qualitative approach guided by Interpretive Description. Semi-structured interviews were conducted with 59 registered nurses and nurse practitioners. Interviews were audio-recorded, transcribed, and managed using qualitative analysis software. Analysis followed a procedure of data immersion, open coding, constant comparative analysis, and the construction of a thematic and interpretive account.
Results: Nurses in this study described great variability in how MAiD had been enacted in their work context and the practice supports available to guide their practice. The development of systems to support MAiD, or lack thereof, was largely driven by persons in influential leadership positions. Workplaces that supported a range of nurses' moral responses to MAiD were most effective in supporting nurses' well-being during this impactful change in practice. Participants cited the importance of teamwork in providing high quality MAiD-related care; although, many worked without the benefit of a team. Nursing work related to MAiD was highly complex, largely because of the need for patient-centered care in systems that were not always organized to support such care. In the absence of adequate practice supports, some nurses were choosing to limit their involvement in MAiD.
Conclusions: Data obtained in this study suggested that some workplace contexts still lack the necessary supports for nurses to confidently meet the precision required of a legislated approach to MAiD. Without accessible palliative care, sufficient providers, a supportive team, practice supports, and a context that allowed nurses to have a range of responses to MAiD, nurses felt they were legally and morally at risk. Nurses seeking to provide the compassionate care consistent with such a momentous moment in patients' lives, without suitable supports, find themselves caught between the proverbial rock and hard place.
Sense of control in end-of-life (EOL) care plays a critical role in the patient's well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients' and families' control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff's strategies to address desire for control.
INTRODUCTION: With an increase in the population living with terminal illness, many patients are accessing EDs during the last days of their life. Yet EDs are often not well prepared to provide end-of-life (EOL) care. The aim of this review was to identify and synthesise studies that describe the views and experiences of emergency nurses in providing EOL care so as to understand the barriers and challenges that they face while caring for these patients and to identify factors that can support appropriate care delivery.
METHOD: A qualitative meta-synthesis was undertaken using a thematic approach. Study quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument tool. Five databases were searched in June 2016.
RESULTS: Eleven qualitative studies met the inclusion criteria and were assessed as having high quality. Sixty-nine findings were identified, combined into 11 descriptive themes and then synthesised into 3 analytical themes: (1) Incongruent ED environment and EOL care. (2) Lack of resources, systems and capacity. (3) EOL care as a rewarding act or an emotional burden.
CONCLUSION: The review identified a need for: (1) Additional training for nurses. (2) The development of clear guidelines in the form of pathways and protocols. (3) Having a separate space for the dying. (4) Providing a supportive environment for staff dealing with high emotional burden and challenging workloads. In order to improve EOL care, organisations must work on the barriers that hinder care provision.
Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life.
Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver.
Design: The study used a narrative inquiry approach.
Setting/Subject: Surviving caregivers of deceased adult cancer patients at a single institution were invited to participate.
Measurements: After reviewing, coding, and categorizing the narratives individually, they were collectively considered and thematically analyzed across all cases to provide a summative analysis.
Results: Six themes captured the overall experiences: (1) relationships and communication with health care providers impact overall experience, (2) being able to prepare for death was a source of comfort, (3) being a caregiver impacts quality of life and identity, (4) spiritual visitations as a welcome experience, (5) navigating the dying days and early grief period wrought with guilt and closure, and (6) loss of community contributes to distress and distracts from healing.
Conclusions: In this study, distress was most often linked to communication failures. Caregivers also experienced distress and guilt related to the loss of their caregiver role. Findings also support a need for increased preparation for caregivers. Finally, the study showed the frequency of visitations/spiritual experiences during grieving.
AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making.
METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed.
RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death.
CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed.
This review aimed to summarize existing nursing literature to provide an overview of the extent, range, and nature of nurses' involvement in artificial nutrition and hydration (ANH) at the end of life and to map the key concepts underpinning nurses' involvement in ANH. A scoping review was designed following the methodological framework guidelines of Arksey and O'Malley and the recommendations for advancing the methodology by Levac et al. An inductive qualitative content analysis was conducted according to the guidelines by Elo and Kyngäs. Thirty-nine articles were identified. Content analysis revealed 1 main category: "nurses' role in the decision-making process," with the 2 subcategories of "mediator" and "activator." The category and subcategories are influenced by the following generic categories: "being," "feeling," and "knowing," each of them constituted by 2 subcategories in their turn. Nurses perform the roles of activator and mediator. Their ability to establish good relationships and their attitudes enable the creation of teamwork and closeness to patients and family: relationships and attitudes are the subcategories of the "being" category. The category "feeling" represents the ways nurses experience the decision-making process, which can raise ethical and moral dilemmas and cause emotional responses. For these reasons, nurses have to create the right balance between personal-self and professional-self. The category "knowing" includes nurses' clinical and ethical knowledge about ANH. It emerges that deep clinical and ethical knowledge of ANH is necessary to provide consistent, adequate care at end of life.
Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns.
Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.
Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.
Results: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7–17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.
Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
AIMS AND OBJECTIVES: To synthesise and map the literature on the psychological outcomes reported following debriefing of healthcare providers who experience expected and unexpected patient death in either clinical practice or simulation setting.
BACKGROUND: Patient death occurs in both the clinical and simulation environments and can result in psychological stress in healthcare providers and students. While debriefing following patient death has demonstrated the ability to promote positive psychological outcomes, addressing the psychological or emotional stress of the event is inconsistently addressed.
DESIGN: A scoping review was conducted using the Arksey and O'Malley framework.
METHOD: The Cochrane Library, MEDLINE, CINAHL, PsycINFO, JBI and Scopus databases were searched with English language constraints and no limit on publication date. The Scoping Reviews (PRISMA-ScR) Checklist was used (Annals of Internal Medicine, 2018, 169, 467) (see Appendix S1).
RESULTS: Eighteen articles (16 research papers and 2 review papers) met the inclusion criteria. Of the 16 research papers, 9 reported on debriefing models in the simulation environment and 7 in the clinical setting. The types of debriefing models found in the simulation setting tended to focus on healthcare providers' learning, while those in the clinical setting typically focused on healthcare providers' emotional reactions and resulted in positive psychological effects.
CONCLUSION: Debriefing has the potential to positively affect psychological outcomes of healthcare providers who experience patient death. The type of debriefing that is selected is a key component to achieving these positive outcomes.
RELEVANCE TO CLINICAL PRACTICE: This scoping review identified the debriefing frameworks used in both simulation and clinical environments following patient death events, and any associated psychological outcomes. There is a need for debriefing to occur after each death in either environment; however, there is a lack of evidence-based debriefing frameworks that can be used in both the clinical and simulation environments to promote positive psychological outcomes.
BACKGROUND: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed.
AIM: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals.
DESIGN: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework.
DATA SOURCES: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews.
RESULTS: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses - a Different Lens'.
CONCLUSIONS: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.
Lorsqu’un jeune étudiant en médecine décide de vivre, de l’intérieur, les joies et les peines d’un service de soins palliatifs, il fait un choix difficile. À distance de l’impératif thérapeutique, partant à la découverte des aspérités d’une humanité en suspens, Amaury Cinquin livre à Laennec une expérience forte. Durant ces semaines, il s’est exercé à l’empathie, a découvert des souffrances apparemment sans issue. Il s’est attaché à comprendre en quoi une certaine organisation institutionnelle permet à tous, soignants et patients, de mieux vivre des situations difficiles. Prenant du recul sur ses études et sa future pratique, il a quitté la Maison Jeanne-Garnier avec un autre regard sur la mort.
Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
Depuis la loi Claeys-Leonetti, les patients peuvent demander aux équipes médicales de pratiquer la sédation profonde et continue maintenue jusqu'au décès dans un cadre spécifique. Pour pouvoir la mettre en place, des staffs ont lieu où la délibération est un temps d'échange qui doit permettre de trouver un consensus afin d'avoir une décision finale validée et reconnue par tous. La délibération qui aboutit à une prise de décision consensuelle n'a pas toujours lieu ou ne répond pas toujours aux demandes des soignants. Notre questionnement et nos recherches ont mené notre réflexion sur "Pourquoi la décision en équipe interdisciplinaire amène des incompréhensions dans l'équipe ?". Pour essayer de répondre à cette question, nous avons cherché les liens entre "délibération" et "décision consensuelle" d'une part et d'autre part les liens entre la "décision consensuelle" et le "premier vécu des soignants quant à la S.P.C.".
Background: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide.
Methods: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide.
Results: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was =80 years, had a life-expectancy of =6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide.
Conclusions: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.