Objective: Patients in the last year of life experience medical emergencies which may lead to an emergency attendance by ambulance clinicians and some patients having a transfer to hospital even when this is unwanted by patients, carers or professionals. Here we report the patient characteristics and outcomes of a 24-hour hospice nursing telephone advice service to support an ambulance service.
Method: An evaluation of the outcomes of ambulance calls to a nursing telephone advice service for people living in northwest London, UK, attended at home during a 6-month period by the London Ambulance Service, whose clinicians then sought advice from the hospice’s 24 hours’ telephone line.
Results: Forty-five attendances of 44 acutely ill people with palliative care needs resulted in a telephone call. Thirteen patients (30%) were male and the median age was over 80 years. Thirty-two attendances (71%) were managed without a transfer to hospital, with telephone advice from the hospice and in some cases arrangements for another clinician to visit. Seven attendances (16%) resulted in a transfer to hospital, of which at least five led to an admission. Six attendances (13%) resulted in a notification of the patient’s death.
Conclusions: This preliminary study shows the feasibility, outcomes and acceptability of telephone advice to support ambulance clinicians attending patients with palliative care needs. The service was associated with low rates of subsequent transfer to hospital. Further controlled research is needed to assess the clinical and cost-effectiveness of the service.
Background: Pediatric palliative care occurs across contexts through the child's illness trajectory, including within the child or young person's community. Interactions with the ambulance service may occur with a child's deterioration, crisis, or when needing transfer, but there is little research on this interaction.
Aim: To explore the experiences and attitudes of ambulance officers in managing pediatric patients with palliative care needs.
Design: targeted e-mail survey was sent exploring perceptions of the involvement with these patients including exposure, comfort, resuscitation topics, and supports available.
Setting/Participants: Participants were Queensland ambulance officers known to have had an interaction with one of the last 50 pediatric palliative care referrals across Queensland.
Results: Twenty-two survey responses were received. Most of the palliative group accessed ambulances for the 13-month study period. Most ambulance officers did not easily identify patients as receiving palliative care. Many participants felt these cases were challenging, confidence levels varied, and staff counselling services were felt to be relevant. Ambulance officers were most likely to use correspondence provided by the family from their usual team as a guide for emergency management. Half of the participants felt patients receiving pediatric palliative care should have a "not for resuscitation" order. Respondents suggested officer support could be improved through increased patient documentation and promotion of existing officer supports.
Conclusions: These findings demonstrate challenges experienced by ambulance officers and suggest practical ways in which pediatric palliative care services can better support emergency services.
BACKGROUND: Many ambulance personnel can withhold or terminate resuscitation on-scene, but these decisions are emotionally, ethically and cognitively challenging. Although there is a wealth of research examining training and performance of life-saving resuscitation efforts, there is little published research examining how ambulance personnel are prepared and supported for situations where resuscitation is unsuccessful, unwanted or unwarranted.
AIM: To identify and describe existing preparation and support mechanisms for ambulance personnel enacting decisions to terminate resuscitation and manage patient death in the field.
METHOD: Focus groups were held with senior ambulance personnel working in clinical education and peer support roles.
RESULTS: Participants believed professional and personal exposure to death and dying and positive social modelling by mentors were essential preparation for ambulance personnel terminating resuscitation and managing patient death. Ambulance personnel responded to patient death idiosyncratically. Key supports included on-scene or phone back-up during the event and informal peer and managerial support after the event.
CONCLUSION: Clinical and life experience is highly-valued by ambulance personnel who provide training and support. However, novice ambulance personnel may benefit from greater awareness and rehearsal of skills associated with terminating resuscitation and managing the scene of a patient death. Organisations need to acknowledge idiosyncratic staff needs and offer a variety of support mechanisms both during and after the event.
OBJECTIVE: Irish legislation on Advance Healthcare Directives (Assisted Decision Making Capacity Act 2015, ADMC) proposes to change the basis of decision making from acting in the patient's best interests to following the expressed will and intentions of the patient. Refusal of life-saving care can occur, without sound reasons. The implications for care in life-threatening emergencies have not been explored among clinicians.
DESIGN: An anonymous questionnaire survey of Advanced Paramedics (AP) covering awareness of the legislation, attitudes to and experience of refusal of care and potential actions in emergency scenarios now and if the legislation were in force. The scenarios covered end-of-life and deliberate self-harm situations potentially requiring resuscitation.
SETTING: All 482 graduates of the Advanced Paramedic Training Programme were invited to take part.
RESULTS: Overall, 85/389 (21.9%) valid contacts responded, with demographic characteristics similar to the overall population. Attitudes ranged from highly positive to highly negative in relation to the potential impact of the legislation on professional and operational responsibilities. Respondents described marked changes in whether they would offer resuscitation if the ADMC were in place.
CONCLUSION: Irish legislation which changes the traditional basis of medical practice away from the best interests of the patient may affect the resuscitation practices of Advanced Paramedics in life-threatening situations. It has significant implications for medical education, professional practice and clinician-patient interactions. This legislation and similar planned legislation may have implications for other EU jurisdictions.
Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information.
Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis.
Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record.
Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.
OBJECTIVES: The need to empower Ambulance Service staff at the point of delivery of end of life care (EoLC) is crucial. We describe the delivery, outcomes and potential impact of the Serious Illness Conversation project delivered to Welsh Ambulance Service Trust (WAST) staff. Over an 18-month period, 368 WAST staff attended face-to-face teaching, which included serious illness conversation communication skills, symptom control and 'shared decision making'.
METHOD: Data collected from WAST staff were used to gain insight on perception of their role and challenges within the context of EoLC, understand the impact of teaching on self-confidence and identify impact on the wider service. A mixed methods approach was used for data analysis.
RESULTS: WAST staff view themselves in several important roles, acting as 'facilitators' to patient-centred, seamless care, providing support, liaison between services and practical help in patient care at the end of life. The difficult questions and situations pertaining to EoLC were related to discussions on death and dying and managing expectation. The predominant barriers identified related to communication. Quantitative outcomes on the six communication domains indicate statistically significant improvement in self-assessed confidence. The overall impact to the wider ambulance service suggests a trend towards better use of resources.
CONCLUSION: The perceived roles and challenges identified by paramedics can help in customising training objectives. The initial outcomes from the ongoing project with WAST demonstrate increased confidence in handling communication issues. Initial successive surveys suggest teaching is making a real life impact on patient care at end of life.
BACKGROUND: Around the world, many paramedics are authorised to withhold or terminate resuscitation. Research indicates this can be a challenging part of their role. Little is known about graduating paramedic student confidence, concerns and learning in this area.
METHODS: An online cross-sectional survey of students nearing completion of a paramedic degree in New Zealand, including piloting of a newly-developed confidence scale.
RESULTS: Seventy-two participants reported varying exposure to termination of resuscitation and patient death. Participants felt most confident providing technical procedurally-based care and least confident with non-technical skills. Participants' greatest concerns included making 'the right call', supporting grieving family, controlling emotions and encountering conflict. Clinical exposure with supportive mentoring, clinical simulation, peer reflection and resolved personal experience with death, were considered most useful for professional development.
CONCLUSIONS: Exposure to termination of resuscitation and management of the scene of a patient death is variable amongst graduating paramedics. Novice paramedics may benefit from opportunities to observe and rehearse non-technical skills including delivering death notification and communicating with bystanders and bereaved family. The Confidence with Resuscitation Decision-Making and Patient Death Scale has favourable psychometric properties and utility as an outcome measure for future research in this area.
OBJECTIVES: As the US population ages and healthcare reimbursement shifts, identifying new patient-centred, cost-effective models to address acute medical needs will become increasingly important. This study examined whether community paramedics can evaluate and treat, under the direction of a credentialed physician, high acuity medical conditions in the home within an advanced illness management (AIM) practice.
METHODS: A prospective observational study of an urban/suburban community paramedicine (CP) programme, with responses initiated based on AIM-practice protocols and triaged prior to dispatch using the Advanced Medical Priority Dispatch System (AMPDS). Primary outcome was association between AMPDS acuity levels and emergency department (ED) transport rates. Secondary outcomes were ED presentations at 24 and 48 hours post-visit, and patient/caregiver survey results.
RESULTS: 1159 individuals received 2378 CP responses over 4 years. Average age was 86 years; dementia, heart failure and asthma/chronic obstructive pulmonary disease were prevalent. Using AMPDS, most common reasons for dispatch included 'breathing problems' (28.2%), 'sick person' (26.5%) and 'falls' (13.1%). High acuity responses were most prevalent. 17.9% of all responses and 21.0% of high acuity responses resulted in ED transport. Within 48 hours of the visit, only 5.7% of the high acuity responses not initially transported were transported to the ED. Patient/caregiver satisfaction rates were high.
CONCLUSION: Community paramedics, operating within an AIM programme, can evaluate and treat a range of conditions, including high acuity conditions, in the home that would typically result in ED transport in a conventional 911 system. This model may provide an effective means for avoiding hospital-based care, allowing older adults to age in place.
Education and recognition of death anxiety are important for respiratory therapists. A vital component of respiratory therapy is managing mechanical ventilation and dealing with death and dying. For most institutions, respiratory therapy is a vital component of the rapid response team, code team, and trauma team. Removal of mechanical ventilation is a duty primarily bestowed upon the respiratory therapist. Exposure to death, on a frequent basis, can take an emotional toll and lead to burnout, stress, and increased turnover. Managers and leaders in the hospital must make efforts to provide counseling and education to support respiratory therapists and their ongoing exposure to death and dying. This paper examines coping mechanisms for physicians and paramedics, resulting in tools that can be used to provide support to the respiratory therapist.
BACKGROUND: Paramedics may be involved in the care of patients experiencing a health crisis associated with palliative care. However, little is known about the paramedic's role in the care of these patients.
AIM: To describe the incidence and nature of cases attended by paramedics and the care provided where the reason for attendance was associated with a history of palliative care.
DESIGN: This is a retrospective cohort study.
SETTING/PARTICIPANTS: Adult patients (aged >17 years) attended by paramedics in the Australian state of Victoria between 1 July 2015 and 30 June 2016 where terms associated with palliative care or end of life were recorded in the patient care record. Secondary transfers including inter-hospital transport cases were excluded.
RESULTS: A total of 4348 cases met inclusion criteria. Median age was 74 years (interquartile range 64–83). The most common paramedic assessments were ‘respiratory’ (20.1%), ‘pain’ (15.8%) and ‘deceased’ (7.9%); 74.4% (n = 3237) were transported, with the most common destination being a hospital (99.5%, n = 3221). Of those with pain as the primary impression, 359 (53.9%) received an analgesic, morphine, fentanyl or methoxyflurane, and 356 (99.2%) were transported following analgesic administration. Resuscitation was attempted in 98 (29.1%) of the 337 cases coded as cardiac arrest. Among non-transported cases, there were 105 (9.6%) cases where paramedics re-attended the patient within 24 h of the previous attendance.
CONCLUSION: Paramedics have a significant role in caring for patients receiving palliative care. These results should inform the design of integrated systems of care that involve ambulance services in the planning and delivery of community-based palliative care.
What is known about the topic? A novel program was implemented to enhance the care provided by paramedics to patients with palliative goals of care. What did this study ask? This study asked about patient experience with the program and the comfort and confidence of paramedics to deliver this care. What did this study find? Patients praised the compassion of paramedics and staying home, and paramedics strongly agreed palliative care should be in their practice. Why does this study matter to clinicians? Knowledge of this program will support similar initiatives and increase access to care and death outside of the hospital setting.
Over the last ten years, the role of NHS ambulance services has adapted considerably, in line with the changing needs of the wider healthcare system. With the evolving priorities in the NHS of managing an increasingly ageing and complex population in the community, ambulance services in the UK now not only play a crucial role in the delivery of urgent and emergency care, but are also required more frequently to provide care in the home and in community settings. Sarah Stead, Shirmilla Datta, Claire Nicell, Richard Smith and, James Hill explain the initiatives set up in two UK ambulance services that have resulted in improved education on end-of-life care among paramedics, using a collaborative approach that is beginning to have an impact at national level.
On trouvera dans ce chapitre : - L'admission des enfants polyhandicapés en réanimation, une période douloureuse pour les parents ; - Quelques données épidémiologiques sur la réanimation des enfants polyhandicapés ; - Les indicateurs des admissions en réanimation des enfants polyhandicapés ; - Comment reconnaître, évaluer et accompagner la douleur chez l'enfant polyhandicapé ; - Le traitement de l'anxiété de l'enfant polyhandicapé en réanimation ; - La limitation et arrêt de soins (LAT) ; la fin de vie de l'enfant polyhandicapé en réanimation ; - Formation, soutien et encadrement de l'équipe paramédicale pour l'accueil et les soins des personnes polyhandicapées et de leurs familles ; - Participation et implication des familles et des professionnels de proximité à coté des personnels soignants de réanimation ; - Les relations du service de réanimation avec la (les) structures d'aval : IME, SSR, CAMSP, pour améliorer le parcours de santé de l'enfant polyhandicapé ; - Améliorer l'accompagnement de l'enfant polyhandicapée dans ce milieu "hostile" qu'est la réanimation nécessite la coopération de tous.
Origine : BDSP. Notice produite par MSSH-EHESP 8qqAR0xD. Diffusion soumise à autorisation
OBJECTIVES: To investigate Irish chartered physiotherapists' views on physical activity for patients with advanced cancer.
METHODS: A mixed methods study design was used. Eligibility criteria included Irish physiotherapists treating patients with advanced cancer. An online survey instrument was created, which included: (1) A quantitative section that explored physiotherapists' views on the role of physical activity for patients with advanced cancer; and (2) A qualitative section that explored physiotherapists' prescription of physical activity for two patient case studies. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using content analysis.
RESULTS: A total of 38 physiotherapists completed the study. In all, 94% (n = 36) of physiotherapists agreed with the statement "being physically active is important for patients with advanced cancer" and 80% (n = 30) stated a need for further information on prescribing physical activity to patients with advanced cancer. A content analysis of case study responses demonstrated physiotherapists have a number of concerns regarding the prescription of physical activity to patients with bone metastasis. Concerns center on patients' increased fracture risk, the presence of osteoporosis and the risk of falls in this patient group.
CONCLUSION: The majority of physiotherapists perceived physical activity to be of benefit for patients living with advanced cancer. There is a need for more education and training around the prescription of physical activity programs to advanced cancer populations. Physiotherapists' responses suggest patients with advanced cancer have limited exposure to factors that may prompt increased physical activity levels post diagnosis.
La prise en soin d'une personne gravement malade, au stade palliatif de la maladie, n'a pas pour enjeu la guérison mais la préservation, voire l'amélioration de la qualité de vie du sujet. Dans le contexte particulier de l'hospitalisation, la qualité du lien relationnel aux soignants et des soins corporels contribuent à la qualité de vie du patient en offrant un espace possible pour exister autrement. L'intervention du binôme psychomotricienne/infirmière de l'Équipe Mobile de Soins Palliatifs cherche à valoriser cette ressource soignante, souvent peu préparée à l'engagement relationnel que le patient en situation palliative suscite, et peu formée aux vertus du toucher dans les soins corporels. Cette pratique complexe, qui se déploie dans un compagnonnage clinique des équipes référentes du patient, offre ainsi un étayage du prendre soin dans un double mouvement : soin de la relation, ouverture vers un autre sens du soin.
Introduction: The number of end-of-life situations encountered in cardiology is rising.
Objective: We investigated perceptions and attitudes of medical and paramedical staff regarding end-of-life situations in a qualitative study.
Methods: Single-centre, qualitative study using semi-directive interviews with physicians, nurses and nurses’ aides in a university hospital cardiology unit. Participants were invited to describe experiences and feelings about end-of-life situations. Verbatim was analysed using thematic analysis.
Results: 13 physicians, 16 nurses and 5 nurses’ aides were interviewed. Main themes were: frequency, type of death, value of patient's life, communication, advance directives (AD), consideration of patient's wishes. The majority felt that the end-of-life situations are increasingly frequent, but their management has improved. Cardiology was felt to be a discipline where death is generally rapid; otherwise, for patients with end-stage heart failure, the course of disease allows time to anticipate end of life. The perceived value of the patient's life plays a role in the level of therapeutic engagement. Communication was felt to be key to ensuring that patient, family and healthcare workers (HCW) are all in agreement regarding clinical status and likely outcome. Poor communication was felt to engender suffering both among HCW and families; lack of time was cited as a frequent cause. AD were not unanimously considered useful; some felt that discussing end-of-life may be more harmful than helpful. AD remain infrequent in our unit. The patient's wishes are taken into account if possible, but some believe the patient is not qualified to know what can be done, and in such cases, their wishes may be disregarded as inappropriate to the clinical situation.
Conclusions: Most felt that end-of-life is managed better in terms of pain relief and communication. Poor communication remains prevalent and can be a source of suffering. Improving these points should improve overall quality of care.
Background: Paramedics, arriving on emergency cases first, have to make end-of-life decisions almost on a daily basis. Faith shapes attitudes toward the meaning and worth of life itself and therefore influences decision-making.
Objective: The objective of this study was to detect whether or not religious and spiritual beliefs influence paramedics in their workday life concerning end-of-life decisions, and whether it is legally possible for them to act according to their conscience.
Methods and Design: This is a literature review of prior surveys on the topic using five key words and questionnaire-based investigation using a self-administered online survey instrument.
Settings/Participants: Paramedics all over Germany were given the opportunity to participate in this online questionnaire-based study.
Measurements: Two databases were searched for prior studies for literature review. Participants were asked about their religiosity, how it affects their work, especially in end-of-life situations, how experienced they are, and whether or not they have any legal latitude to withhold resuscitation.
Results: A total of 429 paramedics answered the questionnaire. Religious paramedics would rather hospitalize a patient holding an advance directive than leave him/her at home (P= 0.036) and think death is less a part of life than the nonreligious (P= 0.001). Otherwise, the Spearman's rho correlation was statistically insignificant for all tests regarding resuscitation.
Conclusions: The paramedic's religiosity is not the prime factor in his/her decision-making regarding resuscitation.
Les patients porteurs d'un cancer des voies aérodigestives supérieures en phase palliative sont souvent trachéotomisés, ce qui prolonge leur survie. Leurs symptômes pénibles et leurs vécus sous trachéotomie interrogent les soignants des unités de soins palliatifs qui les accueillent. Notre objectif était de comprendre comment la question de la trachéotomie en phase palliative se pose en milieu ORL.
Une étude qualitative dans deux services d’ORL en CHU et en Centre de Lutte contre le Cancer a recueilli 17 entretiens compréhensifs auprès de médecins, d'ORL et de paramédicaux.
La dyspnée laryngée est une expérience insoutenable pour patients et soignants. La trachéotomie en urgence est source de grande tension. Le processus d’anticipation de l’urgence n’offre pas au patient d’alternative à la
trachéotomie tant que celle-ci reste techniquement faisable : la sédation est réservée aux situations qui échappent à la technique (récidive d’obstruction laryngée tumorale sous trachéotomie, hémorragie massive).
Les perspectives d’aggravation et les craintes sur les conditions de la mort y sont peu abordées. La trachéotomie est perçue par les soignants comme bénéfique en terme de survie et de confort par liberté des
voies aériennes. L’altération de la qualité de vie par la mutilation et les sécrétions est beaucoup plus exprimée par les paramédicaux ; elle impacte peu la décision de trachéotomiser. L’appartenance majoritaire des patients à un milieu social modeste ou défavorisé, l’intoxication mixte et le fait que ces patients s’expriment peu constituent une particularité de la prise en charge. Un flou conceptuel entoure la sédation, la distinction avec une euthanasie n’est pas claire. La question de la mort est difficile à aborder pour les soignants. Les entretiens ont changé notre regard sur la pratique de la trachéotomie en ORL. Les résultats conduisent à dégager trois problématiques qui se présentent sous forme de contradictions complexes : les patients refusent la trachéotomie de façon expresse et réitérée... et se retrouvent in fine trachéotomisés, les ORL connaissent la sédation... et ne la proposent pas aux patients en anticipation de la dyspnée, la cancérologie ORL est grevée d’une mortalité très forte ... et les ORL ont beaucoup de mal à parler de la mort. Nous tentons de mettre en lumière les ressorts de ces contradictions sous forme d’hypothèses à discuter.
BACKGROUND: It is common for podiatrists and patients to develop long term professional relationships. Patient's decline in health or death may impact a practitioner's mental wellbeing. This research aimed to understand the impact of long term patient death on podiatrists and identify coping strategies.
METHOD: Australian podiatrists were eligible to participate if they had been practicing longer than 5 years and experienced the death of a long term patient in the previous 12 months. Individual semi-structured interviews were conducted with podiatrists and were audio-recorded, transcribed verbatim and individually analysed to identify key themes. Interpretative phenomenological analysis was used to explore the perceptions of podiatrists on the personal and professional impact following the death of a long term patient.
RESULTS: Fifteen podiatrists (11 female) with a median of 15 (range 8-50) years' experience participated. Three major themes emerged: acknowledging connections, willing to share and listen, and creating support through starting the conversation. Participants indicated importance in recognition of the emotional influence of professional-patient relationships. They also discussed the importance of debriefing about death with the right person, which was most commonly colleagues. Participants talked about the emotional impact of death, suggesting the need for supporting discussion and resources, especially for new graduates.
CONCLUSION: Death and dying can be an emotive topic and one which podiatrists may not be prepared for, yet likely to have to deal with throughout their career. These findings enable a better understanding of the impact of patient death and provide possible future directions for the profession to better support podiatrists in this area.
L'auteur a publié une lettre dans les Cahiers francophones de soins palliatifs afin de débattre de la place des soins palliatifs dans un contexte social et politique engagé vers l'aide médicale à mourir au Québec.