PURPOSE: recent data show that there is limited evidence and guidance regarding the best practices for the integration of palliative care (PC) and end-of-life (EOL) post-stroke. The purpose of this meta-synthesis is to understand the PC/EOL experiences after a stroke.
METHODS: a meta-synthesis was conducted to answer the following research question-What are post-stroke PC/EOL experiences from the perspectives of patients, families and healthcare professionals (HCPs)? This approach was completed through two main phases-a systematic search and appraisal of the literature and reciprocal translation with interpretive triangulation of the extracted data. Databases searched were MEDLINE, EMBASE, PsycINFO, Joanna Briggs Institute and CINAHL databases (from their inception to April 2020). After data were extracted, a qualitative exploratory design was used to evaluate the PC/EOL in post-stroke experiences.
RESULTS: the search identified 696 studies. A total of 14 studies were included in this meta-synthesis as they satisfied our eligibility criteria. Uncertainty post-stroke was the overarching main theme that emerged across post-stroke PC/EOL experiences. Within this theme of uncertainty, opportunities to decrease uncertainty emerged from two interdependent themes-presence of cohesive communication and shared dynamic decision process for both families and HCPs.
CONCLUSIONS: to mitigate the degree of uncertainty post-stroke, HCPs should be present, provide clear direct communication and incorporate the value-based goals of care within their medical treatment plan. These findings suggest that future research is needed to focus on how PC approaches can be integrated into stroke care programmes.
OBJECTIVE: To examine transitions out of prognostic talk in interactions between clinicians and the relatives and friends of imminently dying hospice patients.
METHODS: Conversation analysis of 20 conversations between specialist palliative care clinicians and the families of imminently dying patients in a hospice.
RESULTS: Following the provision and acknowledgement of a prognostic estimate, clinicians were able to transition gradually towards making assurances about actions that could be taken to ensure patient comfort. When families raised concerns or questions, this transition sequence was extended. Clinicians addressed these questions or concerns and then pivoted to action-oriented talk, most often relating to patient comfort.
CONCLUSION: In conversations at the end of life, families and clinicians used practices to transition from the uncertainty of prognosis to more certain, controllable topics including comfort care.
PRACTICE IMPLICATIONS: In a context in which there is a great deal of uncertainty, transitioning towards talk on comfort care can emphasise action and the continued care of the patient and their family.
Les unités de soins palliatifs françaises peuvent accueillir des patients en phase terminale de leur maladie, mais aussi des patients qui bénéficient encore de traitement spécifique pouvant stabiliser la maladie à long terme. Or, nous ignorons comment ces soins palliatifs, qui cohabitent avec des traitements spécifiques de la pathologie et pouvant stabiliser la maladie à plus ou moins long terme, se pratiquent par les médecins qui travaillent dans ces unités d’hospitalisation. Nous avons mené une étude qualitative avec des professionnels médicaux et paramédicaux d’une USP française afin de décrire la pratique médicale en unité de soins palliatifs. Quatre « focus-groups » ont été menés avec 3 professionnels médicaux et 4 avec 11 professionnels paramédicaux. Les compétences réflexive et analytique étaient prépondérantes dans le discours des interviewés. Si l’incertitude n’était pas expressément nommée dans notre étude, elle était présente dans chaque geste ou comportement visant à comprendre la singularité du patient. Cette étude originale contribue à comprendre comment sont mis en œuvre les soins palliatifs en situation d’incertitude médicale.
The role of death and dying can play a central role in illness and in health care, and yet the reality of death in making sense of illness is often overlooked. Guided by the philosophy of Martin Heidegger (1962) and the works of Viktor Frankl (1959), this article, which is part of a larger study (Quinn, 2018), reveals the presence of death in the lives of people trying to make sense of having cancer. This article demonstrates that facing up to death is a core part of the personal experience of living with cancer for many people. Amid the diagnosis and the uncertainty it brought, the reality of death is never far away. While the 15 participants who took part in this study in 2015 wanted to survive, some acknowledged that death was very close. Paying attention to the presence of death in these personal stories may help improve the support healthcare professionals give to those living with advanced disease.
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members.
Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.
Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but … ; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare.
Conclusion: the six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.
Background: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging.
Aim: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations.
Design: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients.
Setting/participants: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis.
Results: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as ‘days’, allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as ‘dying’ were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with ‘permission’ to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient’s function previously discussed with the family.
Conclusion: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.
Physician-assisted death is becoming legal in an increasing number of jurisdictions, but psychiatric patients are often explicitly excluded. However, in some countries, including the Netherlands, physician-assisted death of psychiatric patients is allowed. This Open Forum describes a patient with schizophrenia and symptoms diagnosed as refractory musical hallucinations. The patient requested assistance in dying only to recover after a mandatory second opinion, where his complaints were recognized as intrusive thoughts and treated accordingly. This case is used to reflect on how to deal with uncertainty about physician-assisted death of psychiatric patients and to argue for implementation of a due-diligence procedure, such as the one proposed in the Dutch Psychiatric Association's recent guideline concerning this issue.
We consider uncertainty in relation to clinical trials for terminal non-small cell lung cancer, which is an aggressive and difficult to treat form of cancer. Using grounded theory to analyse 85 clinical interactions between doctors, patients and family members, we argue that uncertainty is a major source of tension for terminally ill patients, with individuals confronting a choice between transitioning to palliative care or volunteering for an experimental/trial medication that might postpone death. Regardless of their efficacy, patients must also consider how such experimental treatments might impact their quality-of-life. We argue that clinical trials produce uncertainty through (i) discussions about the efficacy of clinical trials; (ii) the physiological consequences of clinical trial medications; and (iii) the impact clinical trials have on patient's prognostic understanding of their terminal cancer. Accordingly, while study participants encounter high prognostic certainty (i.e. they have a fatal cancer), they nonetheless experience considerable uncertainty in relation to their participation in clinical trials.
BACKGROUND: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes.
OBJECTIVE: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice.
DESIGN: Qualitative case study, using in-depth interviews and constant comparative method.
SETTING/PATIENTS: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background.
MEASUREMENTS: Themes identified in qualitative in-depth interviews.
RESULTS: Patients rarely refused hospice outright but more often postponed using a "soft no," in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care.
CONCLUSIONS: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.
AIM: To develop a simultaneous, evolutionary concept analysis of moral distress and moral uncertainty in the context of medical assistance in dying (MAiD).
BACKGROUND: Moral distress is well represented in nursing literature but disagreement persists in how the concept is defined and understood. Moral uncertainty has not been investigated in-depth. Further definition and conceptual clarity is required to understand these concepts within the context of MAiD.
DESIGN: Simultaneous concept analysis.
DATA SOURCES: Cumulative Index of Nursing and Allied Health Literature, Google Scholar, and PubMed databases were searched for articles in English. The final sample consisted of 44 documents published from 1984 to 2019.
METHOD: An adapted combination of Rodgers's Evolutionary Model and Haase et al's Simultaneous Concept Analysis method.
RESULTS: Despite the significant overlap, moral distress and moral uncertainty have subtle distinguishing differences. Attributes of moral distress in the context of MAiD focus on knowing the right course of action but being unable to act, especially when conflict or suffering occurs. Attributes of moral uncertainty center on an inability to decide on which course of action to take or knowing what outcome is preferable.
CONCLUSION: More research is required to bring further clarity to these concepts and develop interventions to support nurses who receive requests for or participate in MAiD.
Psychologue en équipe mobile de soins palliatifs, nous intervenons en pluridisciplinarité en intrahospitalier mais aussiauprès de structures relevant du sanitaire et du social. Nous avons pu constater que les professionnels du handicap ont un lien d'attachement particulier à leurs résidents. L'accompagnement des résidents dans le quotidien et les projets de vie inhérents aux institutions sont le signe d'un transfert et d'un contre-transfert massifs. Dans ce contexte, penser l'éventualité de la mort des résidents est marqué du sceau du refoulement. Le fantasme d'immortalité - "ça n'arrive qu'aux autres" - est présent, ce qui peut empêcher la parole à ce sujet et susciter des angoisses primitives.
OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.
METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations.
RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).
CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.
I explore the complexities of moral experience during the phase of life after a terminal diagnosis by examining the experiences of one woman living as a hospice patient in St. Croix, US Virgin Islands. Introducing the notion of “existential ambivalence,” I show that this can be a period of deep uncertainty, in which what matters to individuals can shift and fluctuate through time, not necessarily lining up with collective ideals of “the good death.” I focus on a promise this woman made that continued to pull her toward a version of living well while she was also pulled toward dying.
How providers of end-of-life care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating end-of-life spirituality.