BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process.
METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation.
RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care.
CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.
METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.
RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.
CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.
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: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life.
Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted.
Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories-turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states.
Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.
BACKGROUND: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished.
AIM: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life.
DESIGN: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research.
DATA SOURCES: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed.
RESULTS: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care.
CONCLUSION: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.
Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.
Experiencing the end of life of a family member in the intensive care unit is clearly difficult. An important role of critical care nurses is to help family members through this challenging period. This article highlights a few clinically significant barriers and facilitators related to improving family experiences at the patient's end of life that have received less attention in the literature thus far. Facilitators include specific aspects of communication, the nurse's role as the coordinator of care, bereavement care, promoting a "good death," and caring for health care providers. Barriers include medical uncertainty and differences in values and culture.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
L’approche des soins palliatifs centrée sur la personne malade oblige à établir des partenariats entre cette dernière, les soignants, la famille, les professionnels sociaux et les bénévoles d’accompagnement. La communication qui se décline dans le dialogue, l’écoute, l’instauration d’une relation de confiance, l’observation des comportements et du langage corporel est essentielle face à l’incertitude et à un questionnement existentiel du malade et de ses proches. À domicile, comme en témoigne cette infirmière expérimentée, ces questionnements convoquent les soignants dans leur professionnalisme et leur humanité.
Objectifs: L’implication des proches dans les soins palliatifs est considérée comme un élément essentiel de la qualité de la prise en charge du patient. Leur intégration est tributaire de leurs attentes vis à vis de l’unité de soins palliatifs et de leurs représentations des soins palliatifs. Dans un contexte où la population se dit peu informée, cette étude pilote visait à interroger la dynamique des attentes et des représentations des proches en unité de soins palliatifs dans le but d’améliorer la qualité de vie des patients et de leur famille.
Matériel et méthodes : L’approche compréhensive par une méthodologie qualitative a été privilégiée. Des entretiens semi-directifs auprès des proches ont été menés au sein d’une unité de soins palliatifs, à l’entrée puis quelques jours après.
Résultats : Huit proches de patients en soins palliatifs ont été inclus dans l’étude et deux d’entre eux ont pu participer au second entretien. Les proches témoignaient à leur entrée dans l’unité une attente commune, celle d’une prise en charge différente de celle vécue pendant les précédentes hospitalisations. Le besoin de sécurité apparaît en lien avec la crainte de l’abandon du patient et de ses proches et révèle un manque de connaissance sur le rôle de l’unité de soins palliatifs. La qualité des échanges instaurés d’emblée, grâce au premier entretien d’accueil avec le médecin, semble initier une réponse appropriée.
Conclusion: La dimension relationnelle apparaît comme un levier pour soutenir les proches dans leur besoin de sécurisation et d’informations. Une étude à plus grande échelle permettrait de comprendre davantage et plus précisément comment les proches traitent une période qui demeure insupportable et de proposer aux équipes soignantes des éléments d’une réponse mieux adaptée aux besoins et aux attentes.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.
BACKGROUND: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP).
METHODS: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval.
DISCUSSION: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies.
Objective: Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses' use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress.
Method: Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses' home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques.
Result: All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques.
Significance of Results: Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.
There is a deep-rooted and long-standing conviction in modern medicine that the end of life is largely a biological process marked by multiorgan dysfunction with an imperious need for targeted technical and pharmacological interventions.
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OBJECTIVE: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement.
METHOD: This prospective, observational longitudinal study included hospice nurses (N=58) and family caregivers of cancer patients (N=101) recruited from 10 hospice agencies in the U.S. Digitally recorded nurse home visit conversations were coded using Roter Interaction Analysis System to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6 and 12 months after patient death.
RESULTS: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement.
CONCLUSIONS: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term, but may struggle more over time.
OBJECTIVE: To implement a best-practice intervention offering deceased organ donation, testing whether it increased family consent rates.
DESIGN: A multicentre before-and-after study of a prospective cohort compared with pre-intervention controls.
SETTING: Nine Australian intensive care units.
PARTICIPANTS: Families and health care professionals caring for donor-eligible patients without registered donation preferences or aged = 16 years.
INTERVENTION: A multicomponent intervention including offers of deceased organ donation from specially trained designated requesters using a structured conversation separate to end-of-life discussions.
MAIN OUTCOME MEASURE: Proportion of families consenting to organ donation.
RESULTS: Consent was obtained in 87/164 cases (53%) during the intervention period compared with 14/25 cases (56%) pre-intervention (P = 0.83). The odds ratio (OR) of obtaining consent during the intervention period relative to preintervention was 1.13 (95% CI, 0.48-2.63; P = 0.78). During the intervention period, designated requesters obtained consent in 55/98 cases (56%), compared with 32/66 cases (48%) in which the medical team managing patient care raised donation (P = 0.34). Factors independently associated with increased consent were: family-raised organ donation (OR, 4.34; 95% CI, 1.79-10.52; P = 0.001), presence of an independent designated requester (OR, 3.84; 95% CI, 1.35- 10.98; P = 0.012), and multiple donation conversations per case (OR, 3.35; 95% CI, 1.93-5.81; P < 0.001). Consent decreased when patients were of non-Christian religion (OR, 0.18; 95% CI, 0.04-0.91; P = 0.038) and end-of-life and donation meetings were separate (OR, 0.38; 95% CI, 0.16-0.89; P = 0.026).
CONCLUSION: Implementation of a multicomponent intervention did not increase consent rates for organ donation, although some components of the intervention exerted significant effect.
Objective: To explore generalist palliative care providers’ experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.
Methods: Semi-structured interviews conducted with generalist staff (those providing ‘primary’ or ‘general’ palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.
Results: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion ‘display rules’; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing ‘human’ and ‘professional’ expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.
Conclusion: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.
Practice implications: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.