Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Physical activity has increasingly gained attention within palliative care. This article aims to explore how the idea of physical activity influences patients with advanced cancer and health-care professionals’ interactions. The empirical material was gathered as part of an anthropological field study about palliative care needs among 16 patients with advanced cancer, consisting of observations and interviews with patients, relatives, and professionals. Two of the patient cases were analyzed, inspired by Goffman’s theory, showing how patients and health-care professionals interact in relation to physical activity. The findings show that patients played roles either embracing physical activity or distancing it by postponement. Professionals played expert roles of duty and attachment, stressing the importance of physical activity. Thus, they accepted a minimum of physical activity when patients were close to death. Professionals regarded patients’ absence of physical activity as a lack of desire to live; patients regard it as a way to live.
Purpose: Racial and ethnic minority patients receive poorer quality end-of-life (EoL) care compared with white patients. Differences in quality of communication (QOC) with clinicians may contribute to these disparities. We measured differences in satisfaction with communication in the intensive care unit (ICU) by race and ethnicity.
Materials and Methods: This is a cross-sectional survey of family members of patients in ICUs of an academic medical center serving a diverse urban population using The Family Satisfaction with the ICU (FS-ICU) and QOC scales.
Results: One hundred surveys were completed (18.8% white, non-Hispanic; 34.4% black, non-Hispanic; 31.3% Hispanic; 15.6% other race/ethnicity). Mean FS-ICU score was 84.2 (standard deviation [SD] 20.5) for white patients, 83.3 (SD 16.2) for black patients, 82.7 (SD 17.8) for Hispanic or Latino patients, and 80.9 (SD 18.8) for patients with other race/ethnicity (Kruskal-Wallis, P = .92). Differences remained insignificant when controlling for patient and respondent characteristics. The QOC scale was not scored due to nonresponse levels on questions about EoL communication.
Conclusions: Uniformly high ratings may have been influenced by avoidance of EoL discussion. This study is inconclusive regarding whether QOC influences disparities in EoL care since quality of EoL communication was not captured.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
Les documentalistes sont des professionnels que les équipes soignantes croisent essentiellement au cours de leur formation initiale et de leur formation continue. Dans l’intervalle, au cours de leur carrière, les professionnels de santé voient peu de liens possibles à entretenir avec les documentalistes. Or, ceux-ci, grâce à leur analyse de l’information en soins palliatifs, sont une excellente ressource, tant pour les professionnels de santé que pour les patients. Cet article a pour objectif de décrire les bénéfices que peuvent tirer et les patients et les soignants d’une collaboration impliquant les documentalistes. Des pistes de réflexion sur des liens possibles sont également discutées.
La sédation profonde et continue est-elle un soin comme les autres ? Elle n’est pas une euthanasie déguisée. Elle n’est pas un suicide assisté. Pour celle ou celui qui la demande et y consent – on mesure le difficile de cet ultime consentement éclairé pour le malade – elle exige et engage une situation de regard sur sa vie qui se termine, loin d’être banale. Pour celles et ceux qui auront à pratiquer ce geste, c’est aussi un défi. Il engage techniquement – il faut maîtriser cette pratique – ; affectivement – on engage une ultime confiance mutuelle sur fond de violence –, corporellement – un corps à corps est mobilisé au plus près pour celui ou celle qui fait le geste – ; et symboliquement – il s’y engage là un nouveau rite de passage dans l’entre-deux des vivants et des morts. Comment faire alors pour que ce geste technique demeure un soin ? Comment maintenir la possibilité de la relation de soin lorsque la technicité de la sédation et ses effets paraissent créer une situation de rupture de relation définitive avec l’autre ? Que signifiera prendre soin de celui-là qui, désormais, poursuit et finit sa vie dans un état de sédation profonde ?
Les mots du soin sont déjà l’expression d’une attention soignante. Nous nous sommes habitués à une partition, au moins lexicale, entre technique et soin, entre médecin et soignant(e)s, entre cure et care. L’arrivée de nouvelles techniques et de nouvelles pratiques en soins palliatifs avec les pratiques sédatives échappe-t-elle à cette partition …
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Caring for patients who are dying is both a challenging and demanding role. This is further intensified by the expectation that in addition to attending to physical issues, nurses are expected to manage the emotional and psychological aspects of the situation. The inconsistent nature of the care pathways between differing specialist services can often mean that open access to specialist services is not possible. As such, staff may find themselves inadvertently supplementing and often reinforcing interventions offered by specialist (psychological) services with little consideration given to capacity, experience and resources. As the most 'consistently present' professionals in such settings, it is important for nursing colleagues to be aware of the emotional and psychological themes common to patients who are dying. Thus, allowing patients access to supportive conversation with professionals as and when required, ameliorating unnecessary distress.
AIMS AND OBJECTIVES: The proposed study aimed to answer the following question: What communication issues do nurses find challenging when caring for people with life-limiting illness?
BACKGROUND: Evidence suggests that attitudes, skills and knowledge about how nurses communicate effectively with patients and their families could be improved. However, the literature predominantly focuses on nurses working in oncology and the medical profession.
DESIGN: A qualitative descriptive design was used.
METHODS: Focus groups were conducted with 39 nurses from three wards within a regional healthcare organisation in Victoria, Australia. Data were analysed using thematic content analysis. The COREQ checklist was used to document reporting of the study.
RESULTS: In their view, nurses have the potential to develop a strong bond with patients and their families. Three key themes were identified: (a) feeling unskilled to have difficult conversations with patients who have life-limiting illness; (b) interacting with family members adds complexity to care of patients who have life-limiting illness; and (c) organisational factors impede nurses' capacity to have meaningful conversations with patients and their families.
CONCLUSIONS: Caring for individuals with life-limiting illness is complex and often occurs in an emotionally charged environment. However, nurses report being hampered by time restraints and lack of information about the patient's condition and goals of care. Limitations in conversation structure and a comprehensive range of core communication skills affect their ability to confidently engage in conversations, particularly when they are responding to prognostic questions.
RELEVANCE TO CLINICAL PRACTICE: Whilst nurses are responsible for performing technical skills, they can maximise care by developing a trusting relationship with patients and their relatives. Increased acuity limits the time nurses have to talk with patients. In addition, they lack confidence to deal with difficult questions. Specific training may increase nurses' confidence and efficiency when communicating with patients and their families.
OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach.
METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content.
RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic.
SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.
Aim: Relationship between care providers and cancer patients is one of the main elements in providing healthcare to these patients. Understanding the characteristics and the nature of the relationship is a basis for further organization of palliative care and will enhance the performance of care providers. The purpose of this study was to investigate the nature of the relationship in palliative care for cancer patients.
Methods: In this qualitative study, 16 participants with rich experiences in the field of cancer patient's palliative care were selected by purposive sampling. A semi-structured face-to-face interview was conducted with each of the participants. After data collection, all interviews were transcribed and reviewed, and then primary codes, sub-categories, and categories were extracted.
Results: Data analysis emerged three categories; being alongside the patient, establishing and maintaining cordiality relationship, and mutual understanding with the patient. Moreover, an emotional bonding was the main theme that defined the nature of relationship between the care provider team and cancer patients in a palliative care approach.
Conclusion: Effective relationship based on emotional bonding is the foundation of palliative care in cancer patients. Considering the structures and palliative care settings in health systems, it is possible to provide training programs regarding the strategies related to establishing emotional bond for effective delivery of palliative care.
BACKGROUND: Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers' 1) comfort managing patients' physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.
METHODS: Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.
RESULTS: Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.
CONCLUSIONS: Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.
BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.
METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics.
RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement.
CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.
One of the most important concepts Advanced Practice Registered Nurse (APRN) students learn in their graduate education journey is that effective, optimal, meaningful communication is imperative to building healthy relation-ships with patients across the lifespan. Healthy provider-patient relationships should lead to trust, care, respectful collaboration, and shared mutualdecision-making.
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The delivery of palliative care to patients with advanced cancer and their families, whether done by oncology clinicians or palliative care clinicians, requires patient-centered communication. Excellent communication can introduce patients and families to palliative care in a nonthreatening way, build patient trust, enable symptom control, strengthen coping, and guide decision making. This review covers deficiencies in the current state of communication, patient preferences for communication about palliative care topics, best practices for communication, and the roles of education and system intervention. Communication is a two-way, relational process that is influenced by context, culture, words, and gestures, and it is one of the most important ways that clinicians influence the quality of medical care that patients and their families receive.
Effective communication between clinicians and seriously ill patients and their families about a patient's goals of care is essential to patient-centered, goal-concordant, end-of-life care. Effective goals-of-care communication between clinicians and patients is associated with improved patient and family outcomes, increased clinician satisfaction, and decreased health care costs. Unfortunately, clinicians often face barriers in goals-of-care communication and collaboration, including a lack of education, time constraints, and no standardized protocols. Without clear goals-of-care communication, patients may not be able to provide guidance to clinicians about their end-of-life preferences. The purpose of this integrative review was to examine the efficacy of goals-of-care communication interventions between patients, families, and clinicians in randomized controlled trials published between 2009 and 2018. Twenty-three studies met the inclusion criteria with an overall sample (N = 6376) of patients, family members, and clinicians. Results revealed of the 6 different intervention modes, patient decision aids and patient-clinician communication consistently increased comprehension and communication. Twelve of the studies had nurses facilitate or support the communication intervention. Because nurses are a critical, trusted nexus for communication about end-of-life care, focusing on nurse interventions may significantly improve clinical outcomes and the patient experience.
BACKGROUND: Advance care planning (ACP) is an ongoing process of communication involving patients, family members, and caregivers on one side and healthcare providers on the other to establish values, goals, and preferences for future care, along with discussions concerning end-of-life care options. Advance directives promote patient autonomy and provide written documentation of a patient's wishes for future care.
OBJECTIVES: This quality improvement project aimed to determine if ACP discussions initiated by an advanced practice provider (APP) would enhance patient-centered end-of-life care.
METHODS: This study involved retrospective data collection of 20 inpatients and 20 outpatients without a scanned advance directive in the electronic health record at the time of admission or clinic visit, as well as an ACP intervention by an APP.
FINDINGS: APPs can initiate ACP discussions with patients with cancer, which may assist in their understanding of ACP, resulting in completion of the advance directive documents and a change in their code (resuscitation) status.
This study aimed to evaluate nurses’ experiences and factors related to their attitudes regarding discussions of do-not-resuscitate (DNR) and withdrawal of life-sustaining treatment (LST) with patients and their families. A cross-sectional survey was conducted in a tertiary hospital in Taiwan. Nurses aged = 20 years who were in charge of acute inpatient care were randomly recruited. A semi-structured questionnaire was used to evaluate participants’ experiences and attitudes regarding discussions of DNR and LST withdrawal for terminal patients. Logistic regression with adjustment for covariates was used to analyze factors related to participants’ attitudes toward discussions about DNR and LST withdrawal with patients and families in the future care of terminal patients. The participants were 132 nurses. They had significantly more discussions about DNR and LST withdrawal with patients’ families than with patients. Regression analysis showed that participants who had past experiences in actively initiating DNR discussions with patients or patients’ families were significantly more likely to discuss DNR with patients in the future care of terminal patients, but participants aged 40.0 to 60.0 years were significantly less likely to have DNR discussions than those aged 20.0 to 29.9 years. Experiences of actively initiated DNR or LST discussions with patients’ families were significantly more likely to discuss DNR with patients’ families, but those aged 40.0 to 60.0 years were also significantly less likely to have DNR discussions than those aged 20.0 to 29.9 years. Experience in actively initiating discussions about LST withdrawal with patients’ families, being male, and possessing an education level higher than university were significantly related to LST withdrawal discussions with terminal patients or their families in the future. In conclusion, there need to be more discussions about DNR and LST withdrawal with patients. To protect patients’ autonomy and their rights to make decisions about their DNR and LST, measures are needed to facilitate DNR and LST discussions with patients to ensure better end-of-life care
Using the Ministry of Health, Labour and Welfare national data on perspectives toward medical care at the end of life, this study examined the current status of engagement in advance care planning (ACP) activities among physicians and nurses in Japan and associated factors. Only 28.7% of physicians and 27.6% of nurses answered that they were engaging their patients/clients in ACP. Multinomial regression analysis revealed that more frequent involvement in caring for dying patients was associated with ACP engagement for both physicians and nurses. Increased years of clinical practice experience and working in a hospital were associated with decreased likelihood of nurses' ACP engagement. Completion of training designed to promote patient self-determination at the end of life was associated with both physicians' and nurses' ACP engagement. It is recommended that health care professionals be encouraged to complete such training to promote patients' autonomy through ACP.
Je travaille comme cancérologue depuis 1984, et j'ai vécu l'explosion des possibilités thérapeutiques. En prenant soin de mes semblables, j'ai appris à reconnaître l'efficacité et l'étendue de mes interventions, mais aussi leurs limites, étroitement liées à la réalité de la condition humaine, si riche mais naturellement limitée. Le médecin, oeuvrant pour le bien-être physique, psychologique, social et spirituel de la personne malade qui s'adresse à lui, est là pour se battre, à ses côtés, contre le mal et la souffrance, avec détermination, persévérance, humilité et patience.
Proposer de l'art-thérapie en soins palliatifs, c'est amener le malade à vivre une aventure créative qui le place dans un autre rapport à la vie. Cette "aventure" permet de changer son rapport au temps qui reste, d'un temps subi vers un temps choisi. On observe une modification du rapport à soi, en passant de la personne malade vers la personne en création. Enfin, une transformation du rapport aux soignants et aux proches peut s'esquisser.