Objectives: To estimate the probability of a substitute decision maker choosing to withdraw life-sustaining therapy after hearing an affirmative patient response to the phrase "Do you want everything done?"
Design: Discrete choice experiment.
Setting: Single community hospital in Ontario.
Subjects: Nonrandom sampling of healthcare providers and the public.
Intervention: Online survey.
Measurements and Main Results: Of the 1,621 subjects who entered the survey, 692 consented and 432 completed the survey. Females comprised 73% of subjects. Over 95% of subjects were under 65 years old, and 50% had some intensive care-related exposure. Healthcare providers comprised 29% of the subjects. The relative importance of attributes for determining the probability of withdraw life-sustaining therapy by substitute decision makers was as follows: stated patient preferences equals to 23.4%; patient age equals to 20.6%; physical function prognosis equals to 15.2%; length of ICU stay equals to 14.4%; survival prognosis equals to 13.8%; and prognosis for communication equals to 12.6%. Using attribute level utilities, the probability of an substitute decision maker choosing to withdraw life-sustaining therapy after hearing a patient answer in the affirmative "Do you want everything done?" compared with "I would not want to live if I could not take care of myself" was 18.8% (95% CI, 17.2-20.4%) versus 59.8% (95% CI, 57.6-62.0%) after controlling for all the other five attribute levels in the scenario: age greater than 80 years; survival prognosis less than 1%; length of ICU stay greater than 6 months; communication equals to unresponsive; and physical equals to bed bound.
Conclusions: Using a discrete choice experiment survey, we estimated the impact of a commonly employed and poorly understood phrase physicians may use when discussing advance care plans with patients and their substitute decision makers on the subsequent withdraw life-sustaining therapies. This phrase is predicted to dramatically reduce the likelihood of withdraw life-sustaining therapy even in medically nonbeneficial scenarios and potentially contribute to low-value end-of-life care and outcomes. The immediate cessation of this term should be reinforced in medical training for all healthcare providers who participate in advance care planning.
Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family.
Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU.
Design: Prospective case series over a 15-month study period.
Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals.
Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC).
Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%–32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported.
Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.
METHOD: Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher's exact test.
RESULTS: When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use 'recommendations' or 'single-option' choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).
CONCLUSION: Aligning parents to the trajectory of the news about their baby's poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.
PRACTICE IMPLICATIONS: Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
BACKGROUND: Using advance care planning (ACP) to anticipate future decisions can increase compliance with people's end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families.
OBJECTIVE: To explore older people's and their families' experiences with ACP in primary care.
METHODS: We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40-79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach.
RESULTS: We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners' (GPs') time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents' views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP.
CONCLUSIONS: Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs' interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
Cet ouvrage présente le rôle d'accompagnant de malades en fin de vie. Il explore tous les aspects de la relation complexe et bienveillante qui s'instaure entre le malade et son entourage médical et familial.
Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.
Introduction: Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills. Once identified, it gives an indication for existing healthy versus developing unhealthy collusion to be dealt within families.
Objective: The objective of this study was to identify the prevalence of collusion and its clinical and psychological correlates among patients and caregivers in a palliative cancer care.
Materials and Methods: We describe systematic identification and unraveling of collusion across multiple levels in a palliative cancer care eventually drafting an algorithm to unravel the collusion. Patients and families were recruited from in-patient palliative care services after obtaining written informed consent. Qualitative interviews were conducted using collusion questionnaire, EQ5D, Visual Analog Scale, and NIMHANS psychiatric morbidity screen.
Results: Among 62 cancer families interviewed, we identified that 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver, and 75.83% between patient and caregiver. Around 50% collusions were unraveled systematically. Collusion was more prevalent in patients with rapid progression of illness (<6 months), patients with poor coping skills, and preference of being interviewed alone.
Conclusion: This statistics suggests that collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care which are sparse.
Aim: The aim of this study was to illuminate the communication and its meaning in unexpected sudden death with stroke as example, as experienced by stroke team members and next of kin.
Subject and Methods: The study has a qualitative design. Secondary analysis of data from four previous interview studies with stroke team members; physicians, registered nurses, and enrolled nurses from the stroke units (SU) and next of kin of patients who had died due to acute stroke during hospital stay were utilized.
Results: Communication is revealed as the foundation for care and caring with the overarching theme foundation for dignified encounters in care built-up by six themes illuminating the meaning of communication in unexpected sudden death by stroke.
Conclusion: Communication shown as the foundation for dignified encounters in care as experienced by stroke team members and next of kin enables the patient to come forth as a unique person and uphold absolute dignity in care. Acknowledging the next of kin's familiarity with the severely ill patient will contribute to personalizing the patient and in this way be the ground for a person centeredness in care despite the patients' inability to defend their own interests. Through knowledge about the patient as a person, the foundation for dignified care is given, expressed through respect for the patient's will and desires and derived through conversations between carers and next of kin.
BACKGROUND: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff.
METHODS: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability.
RESULTS: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'.
DISCUSSION: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan.
DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1–12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants.
RESULTS: Qualitative case studies were developed around 15 children (aged 1–12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of ‘mutual protection’ dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died.
PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.
Bereaved families fear their child being forgotten by those who knew their loved child, including their child's oncology team. Thoughtfully timed, family-centric condolences shared by pediatric oncology team members have the potential to extend our compassion and kindness toward a family during the darkness of grief. Well-intended medical teams sometimes feel "at a loss" in terms of what to say to a grieving family and how or when to say it. This paper provides a tangible overview of written or verbal condolence communication in a format that can be personalized to the provider and the patient's family.
PURPOSE: Effective symptom discussion is an essential step to enhance symptom management in patients with advanced pancreatic cancer (APC). However, little is known about how these patients communicate their symptoms during health encounters. The purpose of this study was to develop a typology to describe patterns of interactions between patients with APC, their caregivers, and healthcare providers as regards to symptoms and symptom management.
METHODS: Thematic analysis was used to analyze 37 transcripts of audio-recorded, naturally occurring encounters among APC patients, caregivers, and healthcare providers. Transcripts were drawn from the Values and Options in Cancer Care study, a larger randomized controlled communication and decision-making intervention trial, which recruited advanced cancer patients and caregivers across the USA. All transcripts from APC patients that were pre-intervention were analyzed.
RESULTS: Eight unique types of interaction patterns among patients, caregivers, and healthcare providers were identified as follows: collaborative interactions, explanatory interactions, agentic interactions, checklist interactions, cross-purpose interactions, empathic interactions, admonishing interactions, and diverging interactions.
CONCLUSIONS: Our findings provide a systematic description of a variety of types of interaction patterns regarding symptom discussion among APC patients, caregivers, and healthcare providers. These typologies can be used to facilitate effective communication and symptom management.
La famille, les soignants s’inquiètent à l’approche de la mort de l’enfant, de ce qu’il sait, pense et ressent. Ils se demandent si l’enfant a conscience
qu’il va mourir, s’il en a parlé à quelqu’un, s’il faut prendre l’initiative de lui en parler et comment ? L’expérience montre que les enfants en fin de vie acquièrent une conscience de leur mort à venir à travers la dégradation de leur corps. Ils parlent de leur mort en exprimant leurs peurs et désirs, pour être écoutés ou poser des questions. L’entourage de l’enfant, aussi bien familial que soignant, éprouve aussi des peurs, illusions et désirs qu’il projette à bon ou mauvais escient sur l’enfant malade. La notion d’information à l’enfant sur sa mort prochaine est discutée à partir de ce que l’enfant en perçoit et de sa façon de réagir. Écouter ce que l’enfant dit ou ne dit pas nous éclaire sur ce qu’il sait, veut ou ne veut pas savoir. Il est important de garder à l’esprit que le doute et le clivage sont des
mécanismes de défense qui protègent efficacement le patient de ses angoisses, en particulier de mort. Par ailleurs, les difficultés des soignants au moment de la fin de vie sont discutées par rapport à la notion de « mort idéale » et de toute-puissance.
Le tout-petit comme la personne en fin de vie sont rendus au plus vulnérable de leur être, absolument dépendants d'autrui et de ce qui se passe en eux. Parents, proches, soignants : autant de personnes dont la présence, toutjours en réaccordage, pourra permettre à l'être vulnérable de traverser la souffrance et l'angoisse sans nom. Plus que sauver, il nous faut ne pas abandonner et consentir à marcher aux côtés de celui qui désire ne pas être seul avec sa souffrance.
Le premier piège qui attend les accompagnants et les soignants est celui du sacrifice et de l’abnégation. Ce qui passe pour être des vertus hautement morales et spirituelles peut se transformer en piège et devenir un obstacle radical à une relation vivante. C’est un paradoxe qui aboutit à un retournement de sens, qu’on peut éclairer en prenant en compte les actions et les réactions qui gravitent autour et à l'intérieur de la relation d'aide.
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.
PURPOSE: The extent to which patients feel prepared for end-of-life (EOL) may be associated with important clinical outcomes. Despite growing interest in the concept of "preparedness," however, there is insufficient information about what cancer patients actually need to feel prepared. Such information is foundational for patient-centered care, theory-building, and instrument development.
DESIGN: This qualitative study examined patient perspectives regarding preparedness for EOL care.
PARTICIPANTS AND METHODS: In-depth interviews were conducted with patients with advanced malignancies and limited life expectancies. Participants were drawn from a large academic cancer center and had a diverse range of malignancies. Thematic text analysis was used to analyze the data.
FINDINGS: Six overarching themes emerged. These included readiness to manage concerns about: (1) EOL planning (e.g., goals of care, location of care); (2) interactions with healthcare providers (e.g., communication, symptom control); (3) interactions with family/friends (e.g., perceived burden, support); (4) emotional well-being (e.g., existential distress, fulfillment); (5) spiritual well-being (e.g., spiritual comfort, congregational support); and (6) financial well-being (e.g., medical expenses, estate planning).
CONCLUSIONS: Findings highlight areas that patients themselves regard as critical for a sense of preparedness for EOL care. Participants emphasized broader concerns than those previously construed as facets of patient preparedness, and these domains offer modifiable targets for intervention.