Bereavement training in the workplace, can it help bridge the grief support gap? A qualitative evaluation of employers' and employees' views

BackgroundBereavement support is lacking and inequitable despite an excess need exacerbated by COVID-19 and recent reports highlighting the need for consistency. Literature has emphasised the key role communities including employers and public facing organisations could have in caring for the bereaved.AimsTo establish if bereavement training for employers and public facing organisations is beneficial, how it should be provided, to whom and whether associated policy change is required?SettinIn 2021 St Oswald's Hospice, Newcastle started providing bereavement training for employers and employees in public and private sector organisations. To date 343 participants from 105 regional and national organisations including local authorities, charities, universities, and health and emergency-service providers have been trained.MethodsParticipants from the 105 organisations were asked for expressions of interest for participation in qualitative semi structured interviews. Purposive sampling selected 16 people ensuring data sufficiency and representation from all employment sectors.ResultsResults were organised around four main themes: The unique challenges faced by employees and employers following a bereavement, the gap in bereavement training provision (including recommendations for inclusion and expansion), training should be tiered and bespoke (but basic training should be universally received) and change in (organisational and governmental) bereavement policies are required.ConclusionsEmployees of varying grades and professions recommend tiered bereavement training for employing organisations. Perceived benefits include improved support and subsequently mental and physical wellbeing of employees, harmonious and efficient organisations and the development of supportive and compassionate communities. Recommendations for organisational and governmental bereavement policies include paid leave as standard with flexibility to respond appropriately to individual situations.

Palliative and end of life care Experiences of people of African and Caribbean dEscent during COVID-19 (PEACE)

What we knewPeople of African and Caribbean descent are less likely to access palliative and end of life care. It is unclear why they are so poorly served by our services and how COVID-19 has exacerbated this.What we wanted to knowWe sought bereaved relatives’, health and social care professionals’ and community workers’ views on experiences of and barriers to palliative and end of life care and suggestions for improvement.MethodsPublic recruitment was utilised. Over 150 diverse organisations throughout the UK were contacted. Qualitative semi-structured interviews were conducted with a diverse sample of 26 bereaved relatives and 13 professionals.FindingsThere were three key themes:Representation, encompassing discrimination and racism.Personalisation, including culture and the impact of COVID-19.Awareness and Access, including support before and after death and communication and involvement in decision-making.Participants recommend services shouldRepresentIdentify and acknowledge racism and discrimination in palliative care provision.Ensure better representation of African and Caribbean communities within services and in public facing material.PersonaliseAdapt services to ensure they are culturally and religiously competent:Recognise diversity in cultural and religious needs.Challenge racial and cultural stereotypes.Enable equitable remote engagement.Ensure awareness and educationBetter integrate services within communities by working with faith/community leaders.Raise awareness of the value of palliative care services in all communities.Provide training/education for professionals to build confidence and competence.ConclusionPalliative care was perceived as inadequate during the pandemic. Inequities in care provision were exacerbated, to the detriment of people of African and Caribbean descent who were disproportionately and uniquely effected. Palliative care services and local communities could and should learn from each other, to enhance equitable access to appropriate care for all. Significant investment in services and communities may be required.

The changing face of training in light of the COVID-19 pandemic

BackgroundThe Covid-19 pandemic brought many changes to palliative care. Services had to rapidly adapt to provide the structures needed in challenging and evolving conditions. Service workforces contained palliative medicine trainees who, alongside providing clinical care, were also required to fulfil training competencies. This study explored the impact of the pandemic on training (both positive and negative) including the adaptations made and the ongoing legacies.MethodA UK-wide survey was distributed to all palliative medicine trainees through Association of Palliative Medicine regional trainee representatives. Responses were received from over 70% of deaneries. The survey collected qualitative and quantitative data and considered changes to the workplace and training.ResultsAll trainees recognised changes to consultations across all care settings with a particular increase in telephone and video interactions. There were numerous positive work opportunities. Trainees were involved in policy, guideline and educational resource development and complex clinical situations such as the withdrawal of non-invasive ventilation. Education changed. Initially formal education provision was suspended. Subsequently, the shift to virtual platforms had the benefit of reducing travel and increasing flexibility allowing easier access to national speakers and shared resources. Consequently, for many regions it has remained in place. The survey respondents highlighted challenges in assessments particularly Direct Observation of Procedural Skills (DOPS) and Mini-Clinical Examinations (mini-CEX) due to a combination of increased workload, reduced joint reviews and limitations on movement between different clinical areas.ConclusionThe survey showed that there were definite challenges for trainees that arose from the Covid-19 pandemic however there were also positive changes particularly around education. Further work should explore whether there needs to be a greater emphasis on virtual consultation skills in training.

Improving discussions about resuscitation in COVID-19

AimsThis research aims to understand relatives’ and carers’ experiences of discussions about resuscitation. Findings are needed to inform policy and practice about what works well and how discussions about resuscitation need to improve.BackgroundDo Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions have been especially challenging during the pandemic. Hospital visiting restrictions and untimely deaths due to COVID-19 have disrupted usual modes of communication between staff, patients and relatives. There have been reports of blanket DNACPR decisions being applied to older people and complaints about communication are common. This is distressing for patients and families and costly for the NHS.MethodsThis qualitative research uses semi-structured interviews to explore the experiences of people who discussed resuscitation on behalf of a relative during the COVID-19 pandemic. An interview topic guide was developed in collaboration with patients and public involvement partners. Interviews were transcribed verbatim, and analysed using framework analysis.Results18 semi-structured interviews have been undertaken to date. Analysis has identified the following themes:The importance of communication. This includes the timing of communication about DNACPR and examples of good practice and the lack of information about DNACPR for patients and families.The multiple dimensions of resuscitation and DNACPR, with misunderstanding about what resuscitation involves, how the decision about DNACPR is made, and by whom.Wide-ranging impacts of the DNACPR decision, feeling overlooked and disregarded by the medical team, guilt at not contesting a DNACPR decision, and consequent mistrust of the healthcare system.We aim to complete over 30 interviews by March 2022. Recruitment will continue until inductive thematic saturation.ConclusionUrgent action is needed to improve communication and ensure appropriate DNACPR discussions. Current practice results in frequent misunderstandings and lasting negative effects which may have detrimental consequences for bereavement reactions and future relationships with healthcare professionals.

A qualitative exploration of advance care planning in patients with home NIV for COPD

BackgroundThe HOT-HMV study in 2017 demonstrated that patients with persistent hypercapnia following an exacerbation of chronic obstructive pulmonary disease (COPD) who received home non-invasive ventilation (NIV) benefitted from prolonged time to readmission. Advance care planning (ACP) is recognised as being able to improve palliative care outcomes for patients with COPD. This study aimed to explore the benefits of and barriers to ACP in patients with COPD on home-NIV and how barriers might be addressed.MethodsSemi-structured qualitative interviews were conducted with health care professionals (HCP) from the North East Assisted Ventilation Service (NEAVS) (12 interviews) and with patients (11 interviews). Interviews were analysed using the principles of thematic analysis.ResultsThe findings emphasised the importance of ACP whilst also raising a number of challenges. NEAVS is a regional service therefore multiple local teams are also involved in patient care, resulting in a lack of clarity of responsibility for ACP conversations and geographical disparity with care continuity. HCP felt COPD patients were an under-served group both in medicine and society. They often have an uncertain disease trajectory resulting in difficulty in ascertaining appropriate timing for initiation of conversations. The patient group gave insights into the factors that affected their engagement in ACP discussions including high levels of anxiety and communication factors, notably a reduction in face-to-face consultations due to Covid-19.ConclusionsThis study allowed us to map out many of the perceived challenges facing patients with COPD on home-NIV in carrying out meaningful and timely ACP. Being conscious of the challenges allows a deeper understanding and awareness of the importance of individualised ACP discussions. The study supports a review of the structure of similar services to formally incorporate ACP and assign responsibility. Formal palliative care involvement is also suggested, to provide both education for HCP and direct patient input.

Palliative medicine trainees be should learn about frailty: meta-synthesis and Delphi study to establish curriculum content.

OBJECTIVES: Frailty is common and highly associated with morbidity and mortality, a fact that has been highlighted by COVID-19. Understanding how to provide palliative care for frail individuals is an international priority, despite receiving limited mention in Palliative Medicine curricula or examinations worldwide. This study aimed to synthesise evidence and establish expert consensus on what should be included in a Palliative-Medicine Specialist Training Curriculum for frailty. METHODS: Literature Meta-synthesis conducted by palliative medicine, frailty and education experts produced a draft curriculum with Bologna based Learning-Outcomes. A Delphi study asked experts to rate the importance of Learning-Outcomes for specialist-training completion and propose additional Learning-Outcomes. This process was repeated until 70% consensus was achieved for over 90% of Learning-Outcomes. Experts divided Learning-Outcomes into specific (for inclusion in a frailty subsection) or generic (applicable to other palliative conditions). The Delphi panel was Subject Matter Experts: Palliative-Medicine Consultants (n=14) and Trainees (n=10), representing hospital, community, hospice and care home services and including committee members of key national training organisations. A final reviewing panel of Geriatric Medicine Specialists including experts in research methodology, national training requirements and frailty were selected. RESULTS: The meta-synthesis produced 114 Learning-Outcomes. The Delphi Study and Review by Geriatric Medicine experts resulted in 46 essential and 33 desirable Learning-Outcomes. CONCLUSIONS: This frailty curriculum is applicable internationally and highlights the complex and unique palliative needs of frail patients. Future research is required to inform implementation, educational delivery and service provision.

Digital bereavement training to produce compassionate employers and public facing organisations

BackgroundMarie Curie’s recent ‘Better End of Life Care’ report highlighted a lack of bereavement support nationally despite excess need exacerbated by COVID-19. Bereavement support should increase peoples’ ability to cope and improve wellbeing, fundamental to enable bereaved individuals to return to work. Systems approaches to mass bereavement must create compassionate employers.AimsTo produce and evaluate a digitally delivered bereavement training package for employers and public-facing-organisations.MethodsSt Oswald’s Hospice’s regional bereavement service started providing bereavement training for public and private sector employers in 2021. This unique enterprise teaches individuals in positions which support staff wellbeing about the experience and impact of being bereaved, how they can support bereaved employees and why it is important. Participants are asked to express how confident they feel supporting someone who has been bereaved both before and after the training and to complete a quantitative and qualitative evaluation.Results229 participants from 59 nationwide organisations including councils, charities, universities, and health-services have been trained. Those that were confident to help and support someone who has been bereaved increased from 21% before to 76% after training. Participants also felt more comfortable talking about death and dying (34% before, 78% after training). 98% of participants felt their expectations of the training were met and 88% stated they would recommend the training. Qualitative comments focussed on the sessions being informative, practical, and well delivered.‘The session was very informative and was delivered with great sensitivity. I’d highly recommend this to anyone working in or leading a team.’ConclusionThis project demonstrates that bereavement training can be effectively delivered to a wide range of employers and public-facing-organisations, increasing participants’ confidence in supporting employees who have been bereaved. The next phase of this project is to expand training and perform qualitative evaluation with employers, including assessing whether training has resulted in modifications to participating organisations’ bereavement policies.

44 Palliative simulation for internal medicine trainees (PALL-SIM-IM): a nationally adopted education initiative in response to shape of training

BackgroundShape of Training represents a significant change in postgraduate-medical-education. Internal Medicine trainees (IMT) must prove competency in 8 Clinical Capabilities in Practice (CiPs). CiP 8 Managing End-of-Life and Applying Palliative Care Skills represents an opportunity to improve palliative medicine education for generalists, however, the provision of the required education and training is also a significant challenge requiring consideration and innovation. Simulation has been recognised by the Joint Royal College of Physicians Training Board (JRCPTB) as a holistic teaching and assessment method.AimTo produce a simulation training package for IMTs covering all components/descriptors of CiP 8 which can be effectively delivered by a combination of Palliative Medicine Trainees (PMTs), consultants, simulation technicians and teaching fellows. To enable IMTs to learn/practice required skills whilst PMTs address teaching and management curriculum competencies.MethodsThe North East Palliative Registrars Research Alliance (NEPRRA) (a unique initiative ensuring all North East PMTs are involved in teaching/research projects) received simulation training and designed Palliative Simulation for Internal Medicine Trainees (PALL-SIM-IM) a package comprising scenarios mapped to IMT curriculum descriptors. Modification occurred based on feedback and new scenarios incorporated requirements unique to the COVID-19 pandemic.ResultsPALL-SIM-IM has been effectively piloted in 6 sessions throughout the North-East, training 25 IMTs/equivalent. It has received excellent qualitative feedback. Quantitative data demonstrates significant improvement in competence in all curriculum descriptors following training. PALL-SIM-IM has been presented (on request) to IM Specialist Trainee Committees, Health Education England and the JRCPTB. PALL-SIM-IM has been requested by, distributed to and is to be adopted by 7 Health Education England training regions, Scotland and Northern Ireland.ConclusionsThis educational initiative has successfully produced a nationally adopted simulation-based training package for IMTs to aid competency development in CiP 8, reducing duplication of work whilst allowing reciprocal development of PMTs’ leadership and teaching skills.

Multicenter Evaluation of 434 Hospital Deaths From COVID-19: How Can We Improve End-of-Life Care During a Pandemic?

CONTEXT: The pandemic has substantially increased the workload of hospital palliative care providers, requiring them to be responsive and innovative despite limited information on the specific end of life care needs of patients with COVID-19. Multi-site data detailing clinical characteristics of patient deaths from large populations, managed by specialist and generalist palliative care providers are lacking. OBJECTIVES: To conduct a large multicenter study examining characteristics of COVID-19 hospital deaths and implications for care. METHODS: A multi-center retrospective evaluation examined 434 COVID-19 deaths in 5 hospital trusts over the period March 23, 2020 to May 10, 2020. RESULTS: Eighty three percent of patients were over 70%-32% were admitted from care homes. Diagnostic timing indicated over 90% of those who died contracted the virus in the community. Dying was recognized in over 90% of patients, with the possibility of dying being identified less than 48 hours from admission for a third. In over a quarter, death occurred less than 24 hours later. Patients who were recognized to be dying more than 72 hours prior to death are most likely to have access to medication for symptom control. CONCLUSION: This large multicenter study comprehensively describes COVID-19 deaths throughout the hospital setting. Clinicians are alert to and diagnose dying appropriately in most patients. Outcomes could be improved by advance care planning to establish preferences, including whether hospital admission is desirable, and alongside this, support the prompt use of anticipatory subcutaneous medications and syringe drivers if needed. Finally, rapid discharges and direct hospice admissions could better utilize hospice beds and improve care.

Inequalities in awareness and availability of bereavement services in North-East England.

OBJECTIVES: National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19. METHODS: Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times. RESULTS: All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included 'not aware of any services locally'. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months. CONCLUSIONS: Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.