Title: Kingston Report
Author: Kirsty S
Keywords: DAGvGqF5aN0,BAFYF14k1gw,0

ugust 5
End of Life Doula UK Service Evaluation
Kingston & Richmond NHS Commission

Authors: Dr Harriet Radermacher^1, Alex Deverell^2, Dr Emma Clare^3, Dr Guy Peryer^4
1Dr Harriet Radermacher, EoLDUK member and EoL doula on the project. 2Alex Deverell, EoLDUK member. 3Dr Emma Clare, CEO of EoLDUK and established the project in collaboration with the commissioners. 4Dr Guy Peryer is funded by the National Institute for Health and Care Research (NIHR). The views expressed are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care. His affiliations include St Christopher’s Hospice, London; School of Health Sciences, University of East Anglia; Cicely Saunders Institute, King’s College London; Department of Public Health and Primary Care, University of Cambridge; NIHR ARC East of England.

Contents
Glossary of Terms and Abbreviations	Page	3
Executive Summary	Page	4
01. Introduction	Page	7
02. Approach to Evaluation	Page	13
03. NHS Commissioned Outcome Measure Data Page 20
Results of the Contribution Analysis .	age
05. Discussion	Page	49
06. Recommendations	Page	59
07. Conclusion	Page	60
08. Acknowledgements	Page	61
09. References	^Page	^63 
Glossary of Terms and Abbreviations
ACP – Advance Care Planning
DBS – Disclosure and Barring Service
DNACPR – Do Not Attempt Cardiopulmonary Resuscitation
EoL – End of Life
EoLDUK – End of Life Doula UK
GP – General Practitioner
ICB – Integrated Care Board
ISM – Individual, Social, Material
LWDW – Living Well Dying Well
NHS – National Health Service
PPoD – Preferred Place of Death
Executive Summary
Between December 2023 and September 2024, End of Life Doula UK (EoLDUK), in partnership with the South West London Integrated Care Board (ICB), delivered a project offering community-based end of life doula (EoL doula) support in the London boroughs of Kingston and Richmond. The initiative was funded through the End of Life Care and Frailty Innovation Fund. It aimed to improve experiences at the end-of-life by enhancing advance care planning (ACP), reducing unplanned hospital admissions, and increasing the likelihood of people dying in their preferred place.
EoL doulas are trained, non-medical practitioners who offer practical, emotional, and spiritual support to people who are approaching end- of-life and those important to them. EoLDUK practising members are DBS-checked, insured, and work under a code of practice. For this project, 12 EoL doulas supported 25 individuals over varying lengths of time, with referral pathways involving NHS staff, hospice teams, and community self-referrals. Support included ACP facilitation, companionship, advocacy, and respite care.
Outcome Measure Findings
Unplanned hospital admissions: None of the 25 people supported outside of hospital had an unplanned admission during their final three months of life.
Preferred Place of Death (PPoD): Of those able to express a preference, 92% (12 out of 13) died in their chosen location.
Advance care planning: ACP conversations were initiated with 52% of people, with EoL doulas helping document a range of care and legacy decisions.

Qualitative Findings & Impact
Feedback from families, healthcare professionals, and EoL doulas themselves highlighted the emotional reassurance, continuity, and person-centred care doulas provided. EoL doulas filled relational gaps often left by overstretched statutory services.
Feedback showed that families felt more at peace, professionals valued the additional support, and doulas reported personal and professional growth. Several case studies illustrated how EoL doulas prevented trauma, supported last wishes, and ensured people did not die alone.
Challenges
Some referrals were made too late for meaningful relationshipbuilding or ACP.
Confusion about the EoL doula role among health and social care professionals caused initial resistance and communication barriers.
Administrative setup, particularly around NHS data governance, caused delays.

Learning
The project demonstrated that EoL doulas can contribute to reducing hospital admissions, support dignified deaths at home, and facilitate stronger community networks around death and dying. EoLDUK used the learning to strengthen future projects, including refining referral processes and improving NHS engagement strategies. The initiative has raised the profile of EoL doulas and offers a replicable model for integrating community support into formal care systems.
Importantly, those involved in the project, including families, health and social care professionals, and EoL doulas themselves, reported changes in future behaviour. Families said they would now actively seek out EoL doula support again, and health and social care professionals expressed increased confidence in referring to or collaborating with EoL doulas. EoL doulas reported greater advocacy skills, stronger local networks, and a deeper understanding of how to work effectively within multidisciplinary settings. Collectively, these shifts suggest that the project has catalysed lasting change in both attitudes and practices around end-of-life care.
Conclusion
The EoLDUK Kingston and Richmond NHS project highlighted the value of the compassionate, community-based end-of-life care provided by EoL doulas. EoL doulas played a critical role in enhancing people’s final experiences, reducing pressure on clinical services, and fostering more open, supported approaches to dying. Continued collaboration with statutory services holds promise for shaping a more person-centred, integrated model of end-of-life care in the UK.
1.		Introduction
1.1		Background
End of Life Doulas (EoL doulas) are trained, highly death literate, compassionate, members of their community who support people who are approaching end-of-life and those important to them. They accompany individuals at any age or stage of terminal illness or frailty, from the point of diagnosis through to after-death support. The EoL doula role is non-medical, providing emotional, practical, and spiritual support tailored to each person’s needs, with support often involving advocating for the person's wishes, assisting with advance care planning (ACP), providing respite for caregivers, and facilitating open conversations about death and dying. With continuity, calm presence, and flexible support, EoL doulas help ensure that the final chapter of a person’s life is approached with dignity, peace, meaning, and maximises quality of life right up until the end-of-life.

End of Life Doula UK (EoLDUK) is the membership association and community of practice for EoL doulas in the UK. Practising EoLDUK members include both Registered Members (diploma awarded EoL doulas) and EoL doulas in-training, and all are mentored by EoLDUK. Currently EoLDUK members are trained by Living Well Dying Well Training (LWDW) and complete a comprehensive training process which includes in-depth study of the dying process, communication skills, ethical considerations, relationship dynamics, practical support techniques, and self-awareness practices to develop emotional resilience and presence. This training prepares EoL doulas to ‘hold space’ in complex and sensitive situations, working alongside families, communities, and professionals to provide truly person-centred and family-centred care. EoLDUK also sets the standards via a code of practice, and requires practising members are DBS checked, insured, and safeguarding trained.

EoL doulas operate from a position outside the formal healthcare system, embedded in their community, giving them unique flexibility in the support they provide. Their role usually involves communicating with healthcare providers and offering support in a voluntary or privately paid capacity.
However, more recently EoL doulas have started to work in different, more innovative ways with existing healthcare systems [1].
Since 2022, when the first EoLDUK-NHS pilot project began in Leeds [2], EoLDUK has continued to collaborate with health and social care professionals, organisations, and community services to provide a holistic, community-based approach to end-of-life care. By connecting EoL doulas with existing local healthcare networks, we aim to ‘fill gaps’ where additional support is needed and ensure that individuals receive comprehensive care tailored to their needs and wishes. EoL doulas are therefore effective complements to mainstream clinical support [3] as they have time and can facilitate continuity of care, as well as being able to manage relationships with healthcare providers [4].

1.2		Project Context
In 2021, NHS England relaunched the ambitions framework to improve palliative and end-of-life care [5]. It calls for collective local leadership and cross-sector collaboration to make high-quality end-of-life care a consistent reality for all. Further commissioning guidance for Integrated Care Boards (ICBs) were later published in 2022/3 that aligned with the ambitions framework [6-7]. ICBs are legally required to commission palliative care services under the Health and Care Act 2022.
The guidance documents called for a whole-system approach, integrating services across primary, community, acute, and specialist care to provide personalised support. A key part of the framework is ambition six: each community is prepared to help. Integrating community involvement is a key feature in the Palliative and End of Life Care Commission reports published in 2025, along with the NHS 10 Year Plan [8-10].
Expanding community involvement in palliative and end-of-life care is a needed policy move to address the growing demand for support attributable to an ageing population with an increasing prevalence of chronic illness and multimorbidity. The growing demands on care services combined with shortages in the care workforce were key contributors to why EoLDUK were commissioned to work alongside health and social care services in two areas in South-West London: Kingston upon Thames and Richmond upon Thames.

Based on data from the Office for National Statistics, between the census in 2011 and 2021 the number of people 65+ years old increased by 19% in Kingston [11] and 25% in Richmond [12]. Both boroughs are considered affluent, with Richmond notably having the highest proportion of residents in the top social grades. Table 1 lists place of death statistics in 2023 for these two areas compared with the national average. Both areas had a higher percentage of deaths in hospital compared to the national average. The move towards enhancing community-based social support for those in the final phase of life in Richmond and Kingston represented a strategic response to demographic changes, policy directives, community preferences, and financial considerations. The commissioned initiative aimed to provide dignified, personalised family-centred care.
Table 1: Percentage of deaths in different settings across all ages in 2023 (13-14)
| Kingston upon Thames | Richmond upon Thames | England
% deaths in hospital | 46.8 | 45.9 | 42.8
% deaths at home | 26.5 | 28.3 | 28.4
% deaths in care homes | 21.9 | 17.2 | 21.0
% deaths in hospice | 3.0 | 5.9 | 5.2
% deaths in other places | 1.8 | | 2.6
1.2.1		Commissioning Brief
In December 2022 EoLDUK and Living Well Dying Well (LWDW) were jointly contacted by the South West London ICB and Kingston & Richmond Place EoL Care Clinical Lead. They enquired about the feasibility of an EoL doula service pilot, based on the previous project in Leeds, being created in Kingston and Richmond boroughs of SW London.
The rationale for the project was trialling innovative ways to enhance community end-of-life care, particularly regarding increasing the number of people with good-quality advance planning documentation (in this report referred to as ACP) and who died in their preferred place of death, and reducing the number of unplanned hospital admissions in the last 3 months of life. Over the next 12 months EoLDUK worked closely with South West London ICB team members in collaboration with Princess Alice Hospice, to design a project to provide EoL doula support to individuals in the last 12 months of life in Kingston and Richmond.
Key areas of discussion between EoLDUK and commissioners were around EoL doula training and capacity. There were initial plans for some funding to be allocated to training new EoL doulas however it was established that there were already a substantial number of available EoLDUK members in and around the Kingston and Richmond area. As completion of the LWDW foundation training is a requirement of membership with EoLDUK, all members of the project team had completed foundation training, and many were in the process of completing or had completed their LWDW diploma. As is the case with all practising members of EoLDUK, all EoL doulas were required to be receiving and engaging with mentoring. As was the case for the Leeds NHS project, EoLDUK was clear that EoL doulas should not be evaluated based on ‘caseload’ size.
EoLDUK was commissioned alongside two other pilot project services which ran concurrently in the area, all of which were funded via an EoL Care and Frailty Innovation Fund. The agreement reached between EoLDUK and the South West London ICB was initially for £30,000 of funding to provide EoL doula support hours (charged at £25 an hour or £32 an hour for out-of-hours support), doula’s expenses including travel and parking fees, and the associated coordination and administration of the project by EoLDUK. A further £6,000 was allocated to the project at a later date when additional funding became available.
The project began in December 2023. Information about the project was shared via NHS channels, for example in the NHS Trust’s staff communications. The EoLDUK Project Manager also engaged directly with third sector services to provide written information, talks and Q&A sessions.

2.0 Approach to Evaluation
There is a growing interest in researching EoL doulas - the services they provide and the impact of their support. As the movement evolves, it is beneficial to evaluate practice-based evidence that considers the contributions of the role and how they can work alongside statutory health and social care services, in support of the national policy ambitions to improve palliative and end-of-life care.
Traditionally, approaches to evaluation have tried to link an outcome to a specific cause assuming a linear relationship. This has been shown to be very useful and effective in contexts where external factors can be reliably and appropriately controlled, such as in a laboratory. It becomes more complex to attribute an observed outcome to a specific cause when there are multiple interacting factors that change over time with often unpredictable or unintended consequences.
In contrast, a contribution model attempts to acknowledge this complexity by identifying influential factors involved in contributing to an observed change. Contribution analysis is particularly relevant when evaluating complex social initiatives, such as the EoL doula project, where attempting to provide a linear causal association may not be feasible, reliable, or meaningful [15]. Contribution analysis allows for a more nuanced evaluation. It is more prospective in its gaze, it is learning-oriented and accommodates progressive impact over time. In this initiative we used an evaluation framework developed by Matter of Focus that is based on a contribution analysis method [16].
2.1		Evaluation Methods
An important first step in developing a theory of change using the Matter of Focus framework was to hold a facilitated group discussion with the EoL doulas who had agreed to be involved. Ten EoL doulas met with the facilitator (GP) online in January 2024 for 90 minutes to complete the exercise. The online meeting had two parts: i) a discussion of the context surrounding the project, and ii) designing an outcome map together. First, the EoL doulas discussed details that might help or hinder progress, and listed any risks or assumptions linked to how the programme was going to be carried out in conjunction with NHS care. This analysis of the project’s context asked the EoL doulas involved to consider factors at an Individual, Social, and Material level - a method used by the Scottish Government, also known as the ISM tool [17].
Full details of the output from the context analysis are given in Figure 1. Individual factors that were identified as potentially hindering the initiative’s success included cognitive and emotional factors, such as a perceived lack of confidence or lack of local knowledge. Examples of social factors included complex family dynamics or poor relationships with health and social care professionals. Examples of material factors included problems with data collection or navigating differences in care provision between different local authorities. The degree of influence that many of the factors could have could not be anticipated in advance or were out of the EoL doulas’ control. At the end of the exercise the EoL doulas left with a shared understanding of the complexities involved, and a shared motivation to work together as a team.
In the second stage of the online meeting the EoL doulas designed an outcome map together using the Matter of Focus evaluation framework. This uses six key headings described in Figure 2. The EoL doulas discussed these with guidance from the facilitator. This process formulated the theory of change: how they believed benefits might occur and what difference the initiative could make. The outcome map aimed to guide the initiative, monitor its progress, and inform the interview questions that were completed in the last phase of the project. Full details of the outcome mapping process are listed in Table 2.

Figure 1: Context analysis using the ISM model

Figure 2: The Matter of Focus outcome framework

Table 2. Outcome map describing the theory of change
What we do
We provide holistic support (practical, emotional, spiritual) relating to the person’s
end-of-life and those important to them
We engage in future care planning and facilitate ‘what matters most’ conversations
We direct and connect clients to community services and requested spiritual support
We document visits with case notes and communicate with other EoL doulas to
provide peer support and mentorship, and enable project evaluation
We raise awareness in the local community about the EoL doula role and enable
more conversations around death and dying
Who with?
The person who is dying and their inner support network of family and friends
Local health and social care professionals (including the person’s GP, community
teams, hospital discharge team, local hospices)
Community services, social care, funeral directors, home care services, and faith
leaders
Volunteer groups and charity sector
Other EoL doulas
How they feel/respond
The person feels supported and more prepared for the end-of-life where their
preferences, wishes, values, and beliefs are upheld
Families feel less stress and fear knowing that additional support is involved in the
care network
Health and social care professionals appreciate additional support that is available at
times when they cannot be there
EoL doulas feel connected with a wide range of services, organisations and people
EoL doulas experience reciprocal benefits working as a team
All people involved feel like they are part of a strong collaborative care network
What they learn and gain
Improved death literacy that enables the person/family to experience end-of-life care
according to what matters most to them
16
© 2025 [End of Life Doula UK] · Registered Charity No. 1213623 · www.eol-doula.uk

Confidence and competence as EoL doulas in talking to and advocating for the
person/friends and relatives through the dying process that extends into
bereavement
Increased awareness of community resources and enhanced coordination of social
support for end-of-life care
The person and family unit have an expanded social network to call upon
New knowledge, skills and contacts as EoL doulas: including NHS pathways, hospice
provision, urgent responses, and increased experiences with illness trajectories
Health and social care professionals and community partners understand more about
the EoL
What they do differently
Families hold important conversations, engage with future care planning
documentation, and make decisions according to what matters most to them
Families engage with activities that facilitate a completed life (e.g. memory boxes,
managing digital legacies etc)
More support is available outside of statutory service provision for family and friends
(for wellbeing and bereavement support)
People are equipped and supported locally to die outside of hospital if that is their
preference
EoL doulas keep in regular contact through working collaboratively on a joint project
Potentially avoiding unnecessary hospital visits/health service contacts
What difference does this make?
The person and family have better experiences of dying and death by reducing
avoidable harm that wouldn’t have been possible without EoL doula involvement
EoL doula involvement increases the likelihood of a person dying in their preferred
place in an environment that aligns with their wishes
Legacy: we have a model we can share elsewhere about how statutory services and
organisations can work alongside EoL doulas
Less stigma/fear around dying that enables preparation for death to become more
mainstream with increased community participation
Enhanced social cohesion and social capital through working together (e.g. EoL
doulas, charities, health and social care professionals)
Statutory services wish to have an ongoing relationship with End of Life Doula UK

2.1.2		Quantitative outcome measures
EoL doulas were asked to complete some basic information at the beginning and end of supporting each person. This included whether the person had ACP documentation in place and if any ACP was initiated by the EoL doula, their preferred place of death (PPoD), and how many hospital admissions the person had had since they began receiving support. The person’s eventual place of death was also documented when support had ended.
2.1.3		Qualitative interviews
The interviews were conducted by two EoLDUK members (AD and HR), one of whom was an EoL doula involved in the project (HR). They took place between August and November 2024 via telephone or video call, depending on the preference of the interviewees, and were between 10 and 90 minutes in length.
Interviewers made extensive notes of the conversations, and some interviews were recorded, with permission, to enable the interviewers to check the accuracy of their notes and extract quotes verbatim. An ethical process akin to a service evaluation was followed [18]. Interviewees provided written informed consent acknowledging their understanding about the voluntary nature of participation and what would happen with the data. Interviewees were also sent notes of the discussion upon request.
Interviews were semi-structured and aimed to elicit information that aligned with the outcome mapping exercise. The overarching goal was to build a picture of the impact of EoL doulas from multiple perspectives and to identify points of learning. It was important to understand how learning was a precursor to doing things differently in the future. Interviewers aimed to create a space in which team members felt able to speak honestly about their experiences and enjoy the opportunity to provide feedback.

Depending on the role of the interviewee in the project we asked about what excited them most about being involved, how their presence made a difference, what they learned and gained, what were some of the challenges they faced and what could have been done better.
In total we spoke to 9 EoL doulas (one of whom was also the Project Manager), two project mentors, two health and social care professionals and the EoLDUK Operations Executive. A group session with all the EoL doulas was also held online towards the end of the project to provide an update about the evaluation process and to share experiences about the project. Information was also gathered from another online group session with a team of 5 EoL doulas and one project mentor who supported the same person across a period of 5 months.
The interviewers met regularly to discuss their progress and the content of the interviews. When the interviews were completed, the interviewers read and re-read their notes and individually highlighted the key points. They met to discuss the key points and together identified the common issues which transcended the Matter of Focus headings. They also selected some examples to be used as case studies to demonstrate the ways in which EoL doulas worked in this project, and the impact that they made.
2.1.4		Testimonials
EoL doulas were asked at the outset of the project to gather feedback, where appropriate, from the people they worked with about their experiences of having an EoL doula. This included friends and family, but also the health and social care professionals who made referrals and worked alongside them. Written testimonials and a small number of photos were collated with permission from the people involved. A selection of the testimonials appear as part of the contribution analysis narrative and within the case studies.
3.0 NHS Commissioned Outcome Measure Data
Table 3. Outcome data for people supported by EoL doulas (n=25)
Yes
Other
Unplanned hospital
admission whilst being
supported by an EoL
doula
100%
(18)
7 people already in hospital when
referred
| 2 people alive at end of project; 4

Died in Preferred Place of Death (PPoD)

92%	8%	people were not well enough to
(12)	(1)	express PPoD; 6 people discontinued support with EoL doula prior to death

3.1		Unplanned Hospital Admissions
None of the 25 people supported by EoL doulas in their homes, hospice or care home had unplanned hospital admissions (See Table 3). Seven people were in hospital for the whole time they were supported by an EoL doula.
By way of comparison, 64% of people in their last 90 days of life had at least one emergency admission in England in 2022 [19].
3.2		Died in Preferred Place of Death
Of all the 25 people supported by an EoL doula who could express their wishes, 12 (92%) people died in their PPoD (8 home, 2 hospice, 1 hospital, 1 care home) (See Table 3). One person who preferred to die in a care home died in hospital.
Two people were alive at the end of the project, and four people were not well enough to express where they would have preferred to die. Support was not continued for 6 people, so it was not known where they died.

3.3		Advance Care Planning Documentation in Place
Of the 25 people supported, six (24%) had comprehensive ACP documentation in place when the EoL doula first met them. Nine people (36%) had no or only partial ACP in place. Partial ACP meant the person may have only had one piece of documentation (e.g. Lasting Power of Attorney or DNACPR). The status of ACP documentation for 10 referrals (40%) was unknown because the person was too unwell, and in one instance this information was not shared with the EoL doula in the one visit that was
made.
3.4		Conversations about Advance Care Planning
EoL doulas had or made reasonable attempts to have conversations about ACP with 13 people (52%). For 10 of these, EoL doulas assisted the person and/or their relatives to document wishes and preferences in various formats including Advance Decisions to Refuse Treatment, Advance Statements, and funeral wishes documents. Three people declined the offer to discuss ACP. Nine people (36%) were unable to discuss ACP as they were too unwell, and three people (12%) were not supported beyond an initial visit and therefore did not have ongoing conversations about ACP.
3.5		Limitations of Quantitative Outcome Measures
Whilst these quantitative data offer insight into the impact of the project at a system level and enable key outcome reporting for commissioners, they only tell part of the story. The quantitative data do not capture the complexity and nuance of the human experience. They indicate what happened, but not how it felt for those involved. The qualitative data gathered through testimonials and interviews as part of the contribution analysis helped illuminate the project’s subjective impact across biopsychosocial and spiritual dimensions.

4.0 Results of the Contribution Analysis
4.1		What EoL Doulas Did and With Whom
Between December 2023 and September 2024, 12 EoL doulas provided support to 25 people at the end-of-life, and their families, living in the London boroughs of Richmond and Kingston. This support ranged from just one conversation with the person or a family member over the phone, to a few hours of bedside vigil, to several months of regular visits. For five of these people, EoL doulas completed a visit with either the person or the family member and further support was declined. Reasons for this varied from the person and/or family member feeling supported by the initial visit and not requiring further support, to deciding that they did not require EoL doula support.
Any person or family member could self-refer for EoL doula support if they had an estimated six to twelve months to live, and particularly if they needed advocacy and/or ACP support. In total, 37 referrals were made; 12 referrals either did not fit the referral criteria, the person died before the EoL doula contacted them, or the person did not respond to attempts to make contact. The majority of self-referrals were signposted with the support of health and social care professionals (e.g. district nurses, charge nurses, hospital discharge team, palliative care team, hospice workers and social workers). The remainder were made directly by the person or family member using a self-referral form.
A team of 16 EoL doulas agreed to be a part of the project at the outset, 12 of whom actively took referrals and provided direct support. EoL doulas ranged in experience from newly trained to those who had been practising for several years. The four EoL doulas who did not take any active referrals were unable to because of changes in their availability. EoL doulas met regularly online to receive project updates from EoLDUK and to share their experiences.

Where possible, EoL doulas were matched with one project mentor for the
whole project. EoL doulas and project mentors arranged meetings and support to suit their own needs and schedules. Three freelance project mentors were recruited by EoLDUK, with a total of 6 different project mentors working on the project at various points
A significant amount of mobilisation work was undertaken by the Project Manager and Operations Executive to establish the project and to ensure all the necessary processes and procedures were in place to comply with various regulations and standards. In particular this was around information governance, data sharing agreements, and referral processes to allow NHS staff to pass patient information to EoLDUK securely and in line with NHS policies. As the project got underway, the Project Manager was instrumental in efforts to raise awareness about the project amongst local services and the public (See Figure 3 for services contacted). This included identifying key health and social care professionals who were best placed to identify individuals who could benefit from support via the project. The Project Manager also supported EoL doulas involved in the project to do their own outreach, contact services and residents in the area and circulate flyers in local spaces such as churches, libraries, and community centres. The Project Manager also connected with a range of local community services, funeral directors, home care teams, volunteer groups and charities, to not only raise awareness about the project, but also to support the provision of person- centred care.

Richmond Community Services Proactive Anticipatory Care coordinators | | Your Healthcare Kingston Discharge Coordinators
Kingston Hospital Palliative care team | | Parkshott Medical
Richmond Carers Network | | Princess Alice Hospital Palliative Care Team
Age UK local branch | | Queens Nursing
Richmond GPs Alliance | | Carers Kingston
| | Stay Well

Table 4. Project Manager Connections During Project

Your Healthcare Palliative Care Support Team | | Kingston End of Life Care Pathway Coordinator
Princess Alice Hospital Discharge Coordinators | | Marie Curie local coordinator
Local Social | | Community
Prescribers | | Connectors
Richmond Aid | | Richmond Counsellors
Connected Kingston | | Grove Healthcare

Richmond
Community Service

EoLDUK was responsible for screening referrals and matching the person and/or their family with an EoL doula. The EoL doula then made contact over the phone and arranged an initial meeting as appropriate. EoL doulas provided a broad range of support for people at the end-of-life and their families involving holistic practical, emotional, and spiritual support, such as:
Advance care planning
Navigating, signposting, and connecting to community services
Advocating for peoples’ wishes
Night-sitting in hospitals when the person’s relatives were unable to be present
Providing respite to family carers in the community.
Additional activities included raising awareness of the role of EoL doulas and promoting death literacy through community-based conversations.

Case Study 1: Honouring Wishes
Context
A man very close to end-of-life was discharged from hospital and referred to an EoL doula. Although deemed palliative, he was still mentally alert at the time of discharge. His primary wish was simple but deeply important: to return home and see his beloved parrot.
Key Needs or Challenges
·		While the man initially wished to die at home, his preferences evolved in real time. He no longer wanted to be at home, and wished to be in a hospice instead.
·		The emotional and logistical transition from hospital to home, and then to hospice, required sensitive coordination.
EoL Doula Involvement
The EoL doula accompanied the man to fulfil his wish to return home, and facilitated open and honest conversation between the man and his daughter. When it became clear that he no longer wished to die at home, the EoL doula supported the decision-making process and helped coordinate a transfer to hospice care. Without the EoL doula’s presence and responsiveness, this change might have been missed.
Outcomes and Impact
The man was able to fulfil his final wish, returning home to see his parrot, which brought him profound joy. When he changed his mind about dying at home, the doula helped re-navigate the care plan, ensuring his new wishes were respected and acted upon. The man’s death was dignified, and in accordance with his evolving wishes. The case became a meaningful experience for the EoL doula, reinforcing the value of relational presence and adaptability in end-of-life care.

Reflections and Learning
This case demonstrates the importance of presence, emotional attunement, and responsiveness to change at the end-of-life. The EoL doula’s ability to hold space, listen deeply, and facilitate communication made a significant difference in the man’s final days.
Key reflections include:
Small things matter greatly. A simple wish can carry profound emotional weight and deserves to be honoured.
Wishes can evolve. Feelings evolve, and preferences are not always fixed. Flexibility and responsiveness are key.
EoL doulas can help bridge transitions. The patient moved from hospital to home, then to hospice. Such transitions are often stressful, and vulnerable to communication breakdowns. The EoL doula provided continuity and emotional coherence across these settings.
“… just to see the joy of him actually getting to his
own place and parrot … and once he'd met that, then
myself and his daughter speaking to him realised that
he didn't actually want to be at home, and then we
were able to facilitate getting him into hospice, and
kind of being there on the journey … and being able
to go into hospice … that was just something that I
would recall that was really memorable and really
lovely.” (EoL doula)

4.2		How People Responded to Being Involved
4.2.1		Person at end-of-life/family and friends
From the feedback provided, it was clear that those at the end-of-life, as well as their families, felt deeply appreciative and grateful for the support of EoL doulas.
“I wanted to take a moment to express my heartfelt
gratitude for the invaluable support you provided during
a very difficult time. Your dedication to your role as
[EOL] doulas goes above and beyond, and your
commitment to offering comfort and guidance is truly
commendable.” (Family member)
“Thank you for your kindness, understanding, and
unwavering support. Your service is a beacon of light for
those navigating difficult times, and I am truly thankful for
the comfort you provide to individuals and families in
need.” (Family member)
“I can’t express how much I appreciate it and
everything you did for him, I know he would have had
so much comfort with you being there and he would
have really liked to get to know you, thank you so
much from the bottom of my heart.” (Family
member)

The support provided by the EoL doulas within the project had a profound impact, with many families expressing that they felt more at peace, and less fearful and stressed in the face of a difficult, emotional experience. Both family members and health and social care staff emphasised the meaningful connections the EoL doulas made with patients and those important to them. One family member stated “already I feel calmer and supported” after the first phone call with their EoL doula, while others described feeling grounded and more capable of coping with grief. Several testimonials also reflected a sense of reassurance and emotional safety, with one family member noting that the EoL doula's consistent presence was invaluable during a period marked by many changes in hospital staff:
“This was extremely helpful having a regular person that
was a consistent support for me and my sister … [we] had
various people from the hospital coming to see [us] such
as palliative care and chaplain but they changed
constantly … and it was frustrating and a lot of time [we]
were having to repeat ourselves which made my sister
anxious as [it] felt [like] no one [was] listening or being
there for her.” (Family member)
In offering emotional reassurance and practical support, the EoL doulas helped to facilitate an atmosphere where people felt held, witnessed, and connected. This support helped to empower families, making them feel less isolated and more confident in navigating their next steps.

4.2.2		Other service providers
Service providers, such as health and social care professionals and hospice staff, expressed relief and gratitude for the additional skilled support provided by the EoL doulas. The EoL doula’s presence was often described as a comfort, offering practical help and emotional care that eased the pressure on staff.
“I have palliative support workers that I can send in, and they'll sit
with people for an hour or two, but then they're not trained like
you [Eol doulas] are. And they are helpful. They are helpful. But
you know, the whole end-of-life, the UCPs [Universal Care Plans],
that’s the stuff that you [EoL doulas] are taught, that you
instinctively know and can calm a patient. That's what we need.
You know, just that umbrella of ‘we've got this’.” (Health and
social care professional)
“[EoL doula support is] not just for our patients and the relatives. It’s very much about education and supporting our carers and showing them that there is nothing to be frightened of and death is a natural progression.” (Health and social care professional)
“I just wish we had more of you [EoL doulas].” (Health and social
care professional)
From the perspective of EoL doulas, some health and social care professionals questioned who the EoL doulas were and how their role fitted into the existing processes, sometimes with intrigue and sometimes with wariness.
Unfortunately, there was some miscommunication as to whether information could be shared with the EoL doulas, and hospital staff reported that they felt concerned and confused by the mixed messaging. Any misunderstanding was clarified by emphasising the pre-established data sharing agreement. Over time, most concerns gave way to recognition of the EoL doulas’ value.
4.2.3		EoL doulas
From the perspective of the EoL doulas, the experience was deeply meaningful, and they appreciated being part of the project. They felt they were making a difference, providing vital support at a time when it was most needed.
One EoL doula was supporting a couple, and the man was dying at home. His wife had a cognitive impairment or intellectual disability and she was overwhelmed by all the health and social care professionals arriving and leaving her home. The EoL doula was yet another person who had recently come into the couple’s lives, but by supporting the wife with a simple practical task, she was able to ease some of her anxiety:
“We took the washing out and we pegged it on the line, and we didn't talk. We just hung the washing out. And you know, to me, that was important. I had said to her, is there any way I can help? Is there something I can do? She said ‘Oh, the washing’s in the basket’. She had this armour on when I came in, you know, and she wasn't as kind of anxious.” (EoL doula)
Another example illustrated how the EoL doula supported the dying person when the family couldn’t be there:
“It was a case of, you know, this 96-year-old gentleman who
was in a geriatric ward, and his family had been waiting,
anticipating him to die the whole day and they had to leave
him. They had their own young family. They just couldn't stay
any longer, and they didn't want him to die alone. And it went
so well in terms of, you know, I turned up, I waited with him
and sat with him until he died. And the family were right,
because if I hadn't been there, he really would have just died
on his own in that ward. And then after that, the family was so
grateful. I didn't see them in person, but they called me as they
got to the hospital, and they were so, so grateful.” (EoL doula)

However, the project did prove to be challenging. EoL doulas felt like some
services and health and social care professionals could be cautious and
sceptical, and they did not always feel like their role was understood or
respected. In the example above, had the EoL doula not been assertive with
ward staff after she was initially denied entry to the side room he was in, this
man would have died alone. The following reflection demonstrates how EoL
doulas in the project often needed to be fearless advocates to support person-
centred care:
“You're not gonna be welcome in some cases, because
unfortunately, and particularly how the system is stretched at
the minute, the people who receive the best care are often the
people who have somebody to advocate for them...and if
everybody had somebody loudly advocating for them, it
wouldn't function, sadly. So...as doulas you're often going to
ruffle some feathers.” (Operations Executive)
In relation to health and social care professionals’ understanding of EoL doulas, it’s likely to take time:
“[Health and social care professionals] know we're not a family
member, we're not a volunteer, so they do understand that
we're there in a professional capacity, which I guess must be
weird for them, right? Because it's so new. I understand why
from the world of medical, doctors and nurses. It probably is
weird the idea of an end of life doula coming in. But it doesn't
have to stay weird. They can be normalised. They can get used
to it. But at the moment, it seems like it's a bit of an enigma to
them.” (EoL doula)
Navigating the complexities of the role, particularly when working with a wide array of stakeholders in end-of-life care, left many EoL doulas sometimes feeling overwhelmed and periodically frustrated. With time, they felt more embedded within the network. Despite the challenges, the entirely positive feedback from clients and their families made it a satisfying outcome for those involved, and many have expressed interest in being part of similar

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projects in future.

Case Study 2: Being present when family could not be
A 95 year old man approaching the end-of-life, was unconscious in hospital. He had been moved between wards, and the family, who were local, were exhausted. The family, who had young children, could not remain with him overnight, though they knew he was close to death. A referral was made to EoLDUK, and the EoL doula responded that same night.
Key Needs or Challenges
The man was dying and alone in hospital, with family unable to stay.
EoL Doula Involvement
The EoL doula rang the ward ahead of her arrival, and there was some confusion about who she was and why she was coming. Knowing that the man was likely to die soon and that his family had already left, she persisted. She persuaded the ward manager to at least allow her to come and then they could discuss it properly. Upon arrival the conversation continued and the ward head was still unclear about the referral and was also questioning the urgency. The EoL doula said that she might as well just stay given she was there and said she would sit quietly by the man’s bed and leave at midnight, which is what she did. She remained with the man, sitting beside him and offering quiet presence.
Interestingly, the man died right on midnight in the presence of the EoL doula. The man’s family called the EoL doula later and expressed deep gratitude for her presence, knowing that he was not alone when he died.
Outcomes and Impact
The man did not die alone. He had a calm, compassionate companion during his final hours.
The EoL doula’s presence relieved the family of guilt and worry, allowing them to rest and knowing their loved one wasn’t alone.
Hospital staff were not aware of who EoL doulas were and the wider project which could have led to a considerable amount of distress for the family.
Reflections and Learning
This case illustrates the importance of the EoL doula’s willingness to show up, listen, and simply be with the dying man, and to be persistent and assertive for the benefit of his family.
Key learning points include:
Being present is enough. The EoL doula’s stillness and attentiveness created an important holding space in place of loved ones.
Small gestures matter. A quiet room or simply being next to someone, these are acts of profound intimacy that stay with both the dying person and those left behind.
Hospital staff and EoL doulas should be allies. If ward staff were better informed, they would be able to recognise and support EoL doula work, resulting in more person-centred, integrated care.
“I had a bit of tension with the ward staff on
arrival... And if I hadn't been firmer with them and
stood my ground, I could have easily, like, if that
had been maybe my first patient, I could have easily
just gone, oh, okay, I won't come, or I'll turn back
then.” (EoL doula)

4.2.4		Project mentors
The three project mentors who were still involved in the project at its conclusion shared feedback about their experience. For the mentors supporting the EoL doulas, the experience was both challenging and rewarding. They sometimes felt uncomfortable due to the new and evolving nature of the project. At the outset, supporting a team of EoL doulas proved to be challenging as multiple mentors were supporting different EoL doulas, which created mixed messaging. The team were able to find cohesion, by trying a new way of working that they found to be more appropriate for the situation. The project offered the mentors a unique window into the lives of many people and diverse situations, and they expressed excitement at being involved in a potential evolution of how EoLDUK works in the community.
“It’s a really exciting, seat of the pants feeling. There’s always lots of learning in new ways of doing things and when things go well it’s incredibly satisfying.” (Project
Mentor)
The process was often disjointed but ultimately rewarding as they saw the positive impact for the client and their families. Moreover, the project mentors who were still involved at the end of the project expressed interest in being involved in similar projects again.

4.3		What People Involved Learned and Gained
This project enabled the EoL doulas involved to gain valuable insight into the provision of end-of-life care within the NHS. For the EoL doulas who live locally, they have gained new contacts and had valuable interactions with local service providers. Through this process, many said that their confidence and competence increased.
This project provided new experiences and ways of working for the EoL doulas involved. The team of EoL doulas who supported one person was a novel way of working as many of the EoL doulas were used to working solo. There were mixed feelings about working as a team, and questions arose about how to proceed when not everyone agreed. Nevertheless, EoL doulas found working closely alongside each other to be a learning experience with one EoL doula noting “everyone has different approaches which is really interesting”. The newly trained EoL doulas, in particular, appreciated the opportunity to learn in the field from those more experienced. Connection to the wider EoL doula network in general was invaluable for EoL doulas involved and is a core foundation of EoLDUK. Peer support within the project, through the WhatsApp group and group video calls, provided an opportunity for EoL doulas to check in with each other, share relevant local resources and reflect on personal experiences. During the interviews EoL doulas commented on the ”brilliant” support provided by project mentors, and how helpful they found connecting with other EoL doulas within the project, highlighting the importance of peer support in this field.

Case Study 3: EoL doulas working as a team
Context
A small team of EoL doulas provided daily respite support for the live-in carer, offering a few hours each day of presence and companionship to the person at the end-of-life. This team model, where multiple EoL doulas supported one client in rotation offered both opportunities and challenges.
Key Needs or Challenges
A single EoL doula could not provide sustained daily support alone.
The carer was initially unsure about accepting help from unfamiliar people.
There was potential for differences in EoL doula approaches or styles to create tension.
Ongoing coordination and reflective practice were needed to maintain cohesion and clarity within the EoL doula group.
EoL Doula Involvement
Through gentle presence and respectful integration into the home, doulas built rapport over time with both the carer and the family.
The group dynamic allowed for collective learning, flexibility, and deeper insight into the complexities of in-home end-of-life care.

Outcomes and Impact
The shared model allowed for daily coverage without overburdening any one EoL doula and enabled responsive, flexible support.
The family expressed deep gratitude, noting the comfort of knowing their loved one was being supported.
The EoL doulas themselves experienced significant peer learning and reflective growth, modelling strong communication and collaboration in a novel team-based model.
Reflections and Learning
This case highlights how innovative EoL doula models can respond to complex end-of-life scenarios with flexibility, depth, and integrity. It also highlights the emotional labour involved in live-in caregiving and the need for creative, compassionate solutions when formal services fall short.
Key reflections include:
Group models can work if they are well supported. Though novel, the teambased approach proved effective when underpinned by strong mentorship, communication, and shared values.
Relational trust takes time. The initial hesitance from the carer underscores the need for consistency, sensitivity, and patience when introducing external support.
Mentorship and peer support enables reflective practice. Regular debriefs allowed EoL doulas to process experiences, navigate differences, and remain grounded in their service.
4.3		What People Involved Learned and Gained
Health and social care professionals gained a greater understanding of what EoL doulas are and an increased awareness of their skillset and how they can work alongside them in future. They spoke of the time constraints of their roles and how current resource pressures affects the care they can provide, emphasising the “gaps” that the EoL doulas were able to fill to support people at end-of-life.
“The one thing we haven’t got is time, which is where you [EoL
doulas] came in, and you know, not just time to sit, but actually
to use that time to give the family tools to deal with the
imminent death, to make sure that, you know, wills have been
done and that you know those important discussions have been
had.” (Health and social care professional)
People needed to feel ready to accept the support of an EoL doula. In some instances, people at the end-of-life had been introduced to many new professionals and the thought of yet another person was perhaps too overwhelming. Others were unfamiliar with the role of an EoL doula or unsure about accepting support of this kind. This challenge was often compounded by healthcare professionals who either did not clearly explain the role or introduce EoL doulas, or described them as, ‘end-of-life companions’, ‘counsellors’ or ‘night sitters’. As a result, some people may have agreed to a referral without fully understanding the nature of the support being offered.
It was noted that the team were receiving referrals for people who were very close to death, and some people were not conscious when EoL doulas first met them. Many EoL doulas also felt that some referrals were made as a last resort by service providers when services were deemed to not have the time or resources to provide adequate support. One EoL doula had several referrals that led to meeting the person only once. In some instances, clients were not responsive, so EoL doulas were unable to have a conversation. This did not give the EoL doulas the ability to get to know the person, build a trusting relationship or to understand their preferences and needs. From the EoL doulas’ perspective, this made it harder to effectively advocate for the

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person they were supporting.
This also meant that, although the project captured many different aspects of EoL doula support, it did not fully reflect the range of support that EoL doulas can provide. When EoL doulas had worked outside of this project, they were familiar with supporting a person and those important to them around the time they received a terminal diagnosis, meaning they had many months to build a relationship with the person. In this project EoL doulas were not able to provide the usual breadth of support when receiving referrals from people who were very close to death.
That being said, EoL doula support doesn’t have to occur over a long period of time to make a difference. One of the referrals chose to meet with their EoL doula only once. They had already done some research prior to connecting with the EoL doula and seemed to appreciate the opportunity to discuss their thoughts and decisions with someone who was comfortable talking about death and understood ACP. They appreciated discussing specific details that mattered to them and the EoL doula was able to provide them with a non-judgemental space to air their thoughts, e.g. where to keep passwords safe but accessible for family, and instructions for the caregiver of their children on where to order school uniforms. The meeting seemed to give them peace of mind, valuing the opportunity to exchange ideas with someone who works in this niche field. The EoL doula reflected that sometimes just one intentional conversation can help bring peace of mind to a dying person.
4.4		What People Did (Or Are Going to Do) Differently
As a result of their experience during the project and all they had learnt, we sought to understand how all the different people involved may have changed their behaviour. Or rather, given the short time period since being involved, at least their intentions to do things differently in the future.
We heard from the families of the people EoL doulas supported at the end- of-life that now they knew about EoL doulas and what support they provide; they were likely to use the service again for themselves or family members (as appropriate) and to recommend this to others in the future.
For EoL doulas, particularly those who had less experience of supporting people, being involved in the project had enabled them to feel more confident in their abilities and what they had to offer. They talked about having more confidence to take on new referrals. This was both in relation to working with people at the end-of-life and their families, as well as health and social care providers. They talked about having a better idea about who to approach and how to have more effective conversations from the start.
The majority of EoL doulas and mentors involved in this project have decided to get involved in future EoLDUK NHS projects which could be seen to be indicative of a positive experience. For those people who have chosen not to continue, the most common reasons are related to their limited availability or the increased travel time.
Being part of the project increased the awareness of health and social care professionals about EoL doulas. They know about EoL doulas and EoLDUK and may be more likely to support their patients to contact the service in the future, and provide opportunities to speak at relevant events:

“I do think that overall, NHS collaborative projects are just so valuable to our role and our credibility... I think a lot of professionals have heard of us through them. It's led to big changes in how we get the word out nationally...we get asked by nursing teams, medical conferences, universities, to speak to trainee doctors and nurses, and that's usually because they know we have worked with NHS services in the past. So they think...’this is something we need to know about’, and I don't think we would have had that reception without being able to point to these projects as examples.” (Operations Executive)
A health and social care professional questioned whether the support would be as appealing given it would no longer be funded by the NHS. Promisingly, EoLDUK have continued to receive referrals from health and social care professionals in the Kingston and Richmond boroughs.
For the Operations Executive and Project Manager who had ongoing and extensive meetings with the commissioners and spent many hours ensuring the correct procedures and regulatory practices had been followed, they were easily able to identify what they would do (and have subsequently done) differently. Primarily, they would be cautious about embarking on a project where a) the commissioners themselves had not expressed a keen interest in developing an EoL doula project and/or b) the person(s) EoLDUK would be reporting to did not understand the ethos of our work and what makes the EoL doula role different to others. In addition, based on several unpleasant situations which arose due to the lack of internal communication to NHS staff about data sharing permissions (in two cases this led to a person dying alone as the EoL doula was not called) EoLDUK would aim to make this a requirement of the project agreement.
Much of the extensive paperwork and procedures that were set up to enable this project will now serve future EoLDUK-NHS collaborative projects well. For example, practising EoL doulas are now required to have an enhanced DBS check registered with the DBS update service, and EoLDUK has formed partnerships to be able to process these checks. In addition, the project mentor system is established, EoLDUK have guidance documents for health and social care professionals on what EoL doulas do and don't do so expectations and boundaries are clear from the start. Finally, EoLDUK have taken learning from issues with referral processes and data sharing and have a function on the website for professionals to refer and indicate that they have patient consent.
Other changes in response to learning from this project include ensuring that the pool of EoL doulas specify their availability and have all completed EoLDUK indepth ACP continuing professional development training before the start of the project.

4.5		What Difference Does This Make?
“You get one, one chance at getting this right and
having your service there was amazing for my
patients.” (Health and social care professional)
Feedback from families who had received support was overwhelmingly positive, with many expressing gratitude for the reassurance and comfort provided. Families benefited from respite, with EoL doulas offering both emotional and practical support during this challenging time. They also provided families and support networks with tools to navigate the end-of-life process, fostering a sense of preparedness and confidence in being present with death. One family member spoke of the invaluable guidance provided by the EoL doula to enable them to support their father to die at home, as per his wishes:
“I would like to express my sincere gratitude for the
exceptional support provided by the [EoL] doula service
during a challenging time in our lives. Their
compassionate care and guidance were invaluable as we
navigated the difficult process of managing the passing
of my father at home. The expertise and understanding
demonstrated by the [EoL] doula team helped us find
comfort and solace during a time of profound grief. Their
presence brought a sense of calm and reassurance to our
home, making an incredibly challenging situation more
manageable. I am truly thankful for the dedication and
compassion shown by the [EoL] doula service, and I will
always be grateful for the support they provided during
such a sensitive time.” (Family member)
The EoL doula’s compassionate support brought comfort to an unfamiliar and difficult experience, and the family felt supported and reassured through the dying process.
Other feedback emphasised the help that EoL doulas can provide where there is only one family member to support a person at the end-of-life:
“My [EoL] doula was supportive, consistent and helped me
understand certain things about death and helped with what
questions I should ask hospital staff when I was confused
about conflicting information. She was calm and I never felt
rushed for time. She visited my sister on days I couldn’t and
reported back which helped me feel ok about not being
able to attend. She also came last minute to the hospital
when my sister passed away to support me and ask the right
questions from staff about next steps when I could not think
straight! She then followed up through texts with me and
we talked on the phone after my sister passed away. I don’t
know what I would have done without this support as I had
no family and had to organise everything on my own.”
(Family member)
“Thank you for all your support over the last week of mum’s
life and beyond. Your care and attention meant so much
and held me up at times, supporting me to keep me on
track. Thank you for your deep listening. And offering such
sanctuary of space and time together to share deeply what
was moving for me.” (Family member)
Experiences like the ones above illustrate how multifaceted EoL doula support is. Being a consistent, supportive presence cultivates trust, and families feel comforted knowing they are leaving their relative in good hands. EoL doulas foster wellbeing and a feeling of belonging through connection to the wider network. A sense of community is important; for people who feel alone, or don’t have anyone to speak to, EoL doulas can provide a bridge connecting them to others, as well as helpful services. It is also beneficial for there to be a form of follow up support for the family, if they wish, to ease the transition after someone dies. These experiences also highlight how empowered and capable people are to navigate next steps themselves, especially when they feel supported and that someone is ‘on their team’.

The impact of EoL doula presence reaches further than the person at end-of- life and their families. EoL doulas are trained to navigate challenging topics, facilitating open and honest conversations about death and dying, contributing to increased death literacy and competency. By being comfortable talking about death, EoL doulas encourage others to also normalise having these conversations. This was highlighted by feedback from the health professionals within the project:
“[EoL doula support is] not just for our patients and
the relatives. It’s very much about education and
supporting our carers and showing them that there is
nothing to be frightened of and death is a natural
progression.” (Health and social care professional)
“There’s this massive void that can only be filled by
people that are confident surrounding talking about
death.” (Health and social care professional)
Service providers noted the value of EoL doulas offering additional support to patients, particularly for patients who were isolated or without family. The presence of an EoL doula meant that people did not have to be alone when they died if they did not wish to be.
“I can only give positive feedback about the patients
[they] supported. [They were] able to form a good
connection to a gentleman in his last days -
supporting him at home and in the hospice. It was
very clear that the patient appreciated [their] input
enormously.” (Health and social care professional)
“And every single one of my patients I referred to the
[EoL] doula service had a dignified, lovely death. And
it is often just having someone there isn't it that that's
not scared, because death is frightening.”
(Health and social care professional)
“...there's been a couple occasions where [EoL]
doulas have raised concerns regarding situations, shall
we say, which was exactly why I had asked for [EoL]
doulas to go in to advocate for our patients. Which,
again, they did beautifully, beautifully, brilliant.”
(Health and social care professional)
“You guys do such a priceless and fantastic job, it’s a
privilege to work with you. I’m so pleased [name of
person] passed in a peaceful, dignified and non-lonely
way.” (Health and social care professional)
Often EoL doulas provided support to people when no other professional or informal support was available. Two examples are described in the case studies (‘Minimising trauma at the end-of-life through EoL doula support’ and ‘Being present when family could not be’). Unfortunately, there were two further instances where people died alone in hospital because the EoL doula was not called as requested, possibly due to misunderstandings about data sharing permissions.
While it was not always the EoL doulas who had identified a preference to avoid hospital admissions, EoL doulas were able to continue to advocate for and honour the patient’s wishes. For example, there were several cases where the spouse of the person said they would have called 999 if they hadn't had the EoL doula for emotional support when they felt confused, overwhelmed, and needed someone to talk them through what they were witnessing as their relative was dying.

Case Study: Minimising trauma at the end-of-life through EoL doula support
Context
An older man with no formal terminal diagnosis, but who was evidently in the final stages of life and no longer eating or drinking. He lived at home with his wife and adult son, who had learning difficulties. The family were struggling to cope and had limited understanding of the dying process. Despite his physical decline, no formal palliative care or end-of-life planning had been initiated.
Key Needs or Challenges
The health professional attending the man identified that:
The man wished to die at home.
The wife did not understand the signs of dying and interpreted her husband’s withdrawal as depression or laziness, not recognising the terminal nature of his condition.
There was no diagnosis prompting access to fast-track support or anticipatory medications at the time.
The family were emotionally overwhelmed and lacked the tools to manage the situation.
The son’s additional needs added further complexity during the emergency situation.
Doula and Clinical Involvement
An initial home visit by the health professional a week earlier was triggered by a concerned neighbour and colleague, leading to the creation of a Universal Care Plan (UCP) and a decision not to transfer the client to hospital. A follow- up visit was scheduled for a week later to deliver a DNACPR form.

Upon return, the health professional arrived to find an ambulance at the home. The patient had collapsed attempting to get to the toilet and was now visibly dying, unresponsive, with agonal breathing and mottled extremities. The wife was in a state of panic. The paramedics were preparing to take the patient, despite his stated preference and care plan. The health professional intervened, showed the UCP and managed to have the patient moved to bed.
Realising that death was imminent and that the family were not equipped to manage alone, the health professional organised anticipatory medications.
Recognising the urgent emotional and relational needs in the home, and that no other support services would be available on a Friday evening, she made a call to EoLDUK on the off-chance someone would be available.
Outcomes and Impact
The EoL doula arrived just as medications were being administered. The EoL doula, whose presence brought immediate relief, stayed to support the wife and son through the man’s final hours.
The family were incredibly grateful for the EoL doula’s presence. Their overwhelming fear gave way to a sense of being held and supported. The man died peacefully at home, exactly as he had wanted.
Without the intervention of both the health professional and the EoL doula, it is highly likely that the man would have been taken to hospital against his wishes, dying en-route or in a clinical setting, and leaving the family with lasting trauma. Instead, the support they received transformed a potential crisis into a compassionate, dignified experience.

5.0 Discussion

Practising EoL doulas within the wider international network have highlighted the need for further research, including the evaluation of EoL doula practice [20]. The use of context analysis and the Matter of Focus framework widened the scope of our evaluation, capturing traditional quantitative outcome measures alongside qualitative descriptions and feedback. By incorporating testimonials from families of people at the end-of-life as well as health and social care professionals, we aimed to broaden the empirical evidence about the impact of EoL doula support.
The quantitative data suggest that the EoL doulas played a crucial role in preventing unnecessary hospital visits, thereby reducing pressure on an already stretched healthcare system. Notably, 100% of the people supported by EoL doulas, who were not already in hospital, had no unplanned hospital admissions (Table 3). This compares to a national average of 64% people having at least one emergency hospital admission within the last 90 days of life [19]. The presence of an EoL doula in these instances contributed to a calmer, less stressful, and less frightening experience for both the people at end-of-life and those important to them. People supported by EoL doulas were also more likely to die in their PPoD (Table 3).
This aligns with EoLDUK’s person-centred approach to end-of-life care, focusing on and advocating for the preferences and needs of the individual and their community and aligns with the NHS ambition statement: Each community is prepared to help [5].

The initiative offered important learning regarding project setup and implementation. Support from receptive staff within the health care system made a significant difference. Within this project, it was helpful to have health and social care professionals who understood the value of the EoL doula role to initiate conversations with their colleagues, further advocating for the presence of EoL doulas for their patients. Otherwise, EoL doulas were spending a lot of time and energy justifying their presence, which could have been more effectively targeted toward supporting people. Interviews with the EoL doulas suggests that they would have felt more prepared and a sense of ease if there were clear expectations from the outset.
In terms of setting up the project, it’s helpful if commissioners can provide adequate time for promoting the service prior to the start of a project. It takes time to undertake specific outreach and build a strong rapport with key stakeholders. Integral to the role of EoL doulas is their ability to form connections with local services, building much needed social capital which is important for increasing community capacity and reducing barriers to collective action [21]. The project management team also need sufficient time to ensure all required administration has been completed. Within this initiative, the time taken to establish necessary protocols in conjunction with the NHS Trust was a limiting factor.
Further to the already thorough training provided to EoL doulas through Living Well Dying Well, the prerequisite of working to EoLDUK’s Code of practice, and having a DBS check, the NHS Trust required all EoL doulas to have enhanced DBS checks and for these checks to be individually confirmed by an NHS member of staff. While understandable from a safeguarding perspective, this did cause further delays through the NHS Trust needing to check this on their system too. The information governance training and assessment documents were also a new addition and did take a significant amount of time to complete. Earlier agreements on requirements as well as clarity around data sharing and consent processes addressed at the outset with all parties would be helpful to reduce administrative burden in future. Moreover, the issue as to whether NHS staff could share information about patients with their EoL doula/s would have been avoided.
Ambition four of NHS England’s Ambitions for Palliative and End-of-life Care Framework is of particular relevance here [5]. Poor communication and/or a failure to share information has been cited as a recurrent failing within the current healthcare system - and this was evident within this project. Unfortunately, in two separate cases, two people died alone in hospital, against the wishes of their families, because the EoL doula was not contacted as requested when their conditions had deteriorated. This outcome highlights not only the emotional toll of a strained system, but also the importance of consistent, comprehensive communication. Emphasis on pre-established processes and protocols, agreed with other NHS departments, e.g. palliative care wards, before the start of the project could cultivate a more cohesive working relationship.
There is a clear need for additional non-clinical community-based support for people at end-of-life. There was a strong interest well after the project had stopped accepting new referrals, with EoLDUK continuing to receive signposted referrals from staff at Kingston Hospital. At the end of the project one person chose to continue receiving EoL doula support on a self-funded basis, another person and their family have continued to receive support subsidised by EoLDUK, while the relative of another person contacted one of the EoL doulas for support of another family member.
The learnings and reflections from this project, even from an early stage, have already been useful to guide EoLDUK’s future projects. Although conversations around ACP were considered an important aspect of the EoL doula role within this project, EoLDUK has chosen to implement additional in-depth ACP continuing professional development training (further to what is included in the Living Well Dying Well training) as a prerequisite for being involved in the next project as an EoL doula. This emphasises the importance of understanding the dying person’s wishes to effectively advocate for decisions to be made in alignment with their preferences.
Curiosity around involving EoL doulas alongside statutory health and social care services is developing. A similar project has been commissioned by two other South-west London boroughs (Sutton and Merton) suggesting that working with EoLDUK is viewed positively. The Project Manager emphasised the value of working with organisations like the NHS, on account of its value to EoLDUK’s credibility as an organisation and the opportunity for health and social care professionals to better understand the EoL role through working with them directly. The findings of this project can contribute to a framework for how EoL doulas can work with services and organisations in future. For example, applying learnings from this evaluation, particularly around systems setup and information sharing, could help streamline future projects, reducing the resources required for initial set-up and allowing more focus to be placed on implementing direct support.
This project has demonstrated how beneficial having an EoL doula present at end-of-life can be. However, the reflections of the EoL doulas within this project mirrored the mixed feelings shared by others with regards to whether it is better to be working entirely outside of or within formal healthcare systems [20]. Some feel that too much standardisation has the potential to take away some of the intuitive, holistic aspects of how EoL doulas can work, which reflects other research findings (e.g. [1]). While others argue that formalising EoL doulas within healthcare benefits patients through filling ‘gaps’ in the current system.

5.1		Square Peg Round Hole?
An expansion of palliative and end-of-life care is needed, and medical professionals alone cannot provide the required breadth of care [22-23]. This is an opportunity to move away from the purely medical approach, which has become ‘conventional’ end-of-life care, to an innovative, more collaborative one. Many are recognising the need for a collective response, one which combines both clinical and community knowledge to fully address the needs of people at the end-of-life [5, 24-26].
The interest and research into this area is demonstrated by some hospices and palliative care organisations exploring, or having already implemented, EoL doulas within their teams. Integration of EoL doulas into healthcare systems has also occurred in many other countries, in addition to here in the UK, including Australia, Canada and the US [1], reflecting momentum on a global scale. As yet, there’s no one way of incorporating EoL doulas into the existing healthcare systems.
EoLDUK “set the standards for UK end of life doula practice” [27] and being innovative is a way that EoL doulas can continue to forge a path. Many of the EoL doulas became involved with the project to be a part of a potential new evolution of how EoL doulas work in the community, to connect with more people with the intention to facilitate an end-of-life that is as peaceful, meaningful and dignified as it can be. The number of EoL doulas wanting to be involved in the project, and furthermore many of the EoL doulas from this project having already expressed interest in being involved in the next, illustrates the enthusiasm for collaboration and envisioning of potential benefits.

The nature of how EoL doulas work, balancing tacit, more emotional knowledge with expert, professionalised knowledge [28] means that the role is multi-faceted and can change depending on the needs of the person/s they’re supporting. However, as it’s not a one-size fits all approach it can be difficult to define. When working alongside other professionals, questions can arise about what exactly the responsibilities of an EoL doula are and how they overlap with other roles. This project highlighted that many health and social care professionals were encountering EoL doulas for the first time and were still learning about their scope and contribution. From EoLDUK’s perspective, the EoL doula role is not to replace medical care but to complement it, ensuring that people receive the holistic, compassionate support they need at the end-of-life.
By tailoring their role to the individual needs of the person dying, working alongside other services, and supporting and connecting communities, EoL doulas are very much in alignment with NHS England’s ambitions for palliative and end-of-life care (2021 - 2026) [5]. In theory this is a helpful match; however, in practice, as demonstrated in this project, there are natural challenges with integrating new approaches within existing systems. These are key learning opportunities that can help to inform future collaborations and highlight the importance of ongoing dialogue and mutual understanding.
This project demonstrated that when professionals do understand the EoL doula role, they are overwhelmingly positive in their response. Health and social care professionals frequently described EoL doulas as offering a kind of support that complemented their own work and helped ensure patients had a better end-of-life experience.
As the need for broader, more person-centred and family-centred end-of-life care grows, so too does the value in finding ways to bring together the strengths of both formal healthcare and community-based support. A cooperative approach, with palliative and end-of-life services and communities working together, can fill the gaps that neither alone can address. Rather than reshaping one to fit the other, this work offers a chance to co-create new approaches that respect the unique contributions of all involved.

5.2		Expectations Versus Reality
This project set out to evaluate how EoL doulas can work alongside formal NHS services in a novel context in South-west London, aiming to enhance care experiences by providing holistic, person-centred support for individuals nearing the end-of-life. For the most part, EoL doulas fulfilled these expectations, offering essential companionship, advocacy, and a continuous presence that is often missing from overstretched statutory services. However, two notable challenges disrupted this alignment.
First, about a quarter of referrals involved individuals who were too unwell or unconscious to engage in meaningful dialogue about their care preferences, a deviation from the expected referral parameters of those with a 6–12-month prognosis. This not only complicated care delivery but also hindered efforts to collect outcome data agreed with commissioners.
Second, EoL doulas encountered more resistance than anticipated from patients, families, and professionals. Some individuals who were approaching the end-of-life, and their families, saw EoL doulas as just another unfamiliar person entering their space. Unlike typical situations where EoL doulas are sought out directly by those who understand and desire their support, many referrals were made by health and social care professionals who were themselves uncertain about the EoL doula role. This left EoL doulas in a position where they had to explain and, at times, persuade sceptical or unprepared recipients of their value. This was described as an unfamiliar and occasionally uncomfortable experience.

EoL doulas did not only support the person who was at the end of their life but also their family and friends wherever this was possible and wanted. This support typically included helping them prepare for their person’s death both emotionally and practically.
Common examples were the EoL doula talking relatives and friends through the physical changes they could expect to see during the dying process, helping them to have tender conversations with their relative so that things were not left unsaid, assisting with contacting other services to ensure anticipatory medication was accessible, and helping them to prepare the home environment to make receiving and providing care easier.
The EoL doulas’ ability to flex between emotional, practical, and spiritual support enabled people to maintain dignity and autonomy, eased burdens on families and professionals, and helped people find comfort and connection as they approached death.

5.2.1		Communication gaps and system integration
Communication breakdowns were a central thread running through many of the project’s difficulties. Health and social care professionals were at times unsure about the EoL doulas’ remit, what responsibilities they held, and whether they were entitled to access patient records and confidential information. This lack of clarity sometimes bred mistrust or guardedness, with professionals feeling cautious or, in some cases, threatened by the EoL doulas’ presence. These dynamics made it difficult for EoL doulas to fully integrate into the network of support around the individual at end-of-life, a key aspiration of the project. The broader vision of fostering close, collaborative working relationships between EoL doulas and formal care providers proved more challenging than expected, especially in high-pressure environments where professionals often lacked time to nurture new working relationships or explore the full potential of a new role within their familiar care pathways.
5.2.2		Team dynamics and operational realities
Within the EoL doula team itself, experiences reflected both the potential and the practical difficulties of working in a collective way. For many EoL doulas, particularly those who were newly trained, the project provided rich opportunities to build confidence, deepen their understanding of local systems, and develop core skills such as communication, advocacy, and resource navigation. The chance to work as part of a team and benefit from peer learning was highly valued, especially in a role that is often carried out independently. However, the practical realities of collaboration introduced strains as well. Time-consuming administrative tasks such as note-taking and regular check-ins stretched capacity, while coordinating care across multiple EoL doulas to maintain service continuity proved difficult. Different working styles and approaches to end-of-life care sometimes created friction, particularly for those used to working autonomously.
One of the benefits of EoL doulas as compared to end-of-life healthcare professionals, is that EoL doulas have more time to spend with people and can provide continuity of care across the end-of-life phases [4]. However, in this project, because EoL doulas were self-employed and juggling other work commitments, maintaining consistent, long-term engagement with individuals was not always possible, undermining the ideal of offering continuous, personalised support from a single EoL doula.
5.2.3		Positive outcomes and learning
Despite the hurdles encountered, the project produced tangible and impactful successes. Families and individuals receiving EoL doula support consistently reported improved understanding of the processes and practicalities surrounding death, dying, and available support services. The EoL doulas’ ability to offer time and relational care stood out as a key advantage, particularly in a context where statutory health professionals are often too stretched to provide extended emotional and practical support. There were compelling examples where EoL doula involvement led to significantly better experiences for individuals, enabling them to die in their place of choice or helping avoid unnecessary distress during their final days. For EoL doulas themselves, the project was developmental, particularly for those newer to the role. They gained deeper insight into local service pathways, learned to navigate complex care environments more deftly, and enhanced their skills in communication, advocacy, and interprofessional collaboration, laying strong foundations for their ongoing practice.
5.2.4		Legacy and broader impact
The project has left a meaningful and promising legacy. Locally and nationally, the profile of EoL doulas has been raised. EoLDUK received multiple invitations to present their work at professional conferences and has established a clearer voice in conversations about the future of communitybased end-of-life care. Importantly, the EoL doulas developed a replicable framework that demonstrates how statutory services can partner effectively with community-based EoL doulas - a model that provides an important foundation for future projects and policy developments. However, whether long-term, systemic partnerships will flourish remains to be seen. Broader ambitions of reducing stigma around death, encouraging ACP, and fostering stronger community resilience were met in modest, individualised ways rather than through large-scale systemic change, limited by the project’s timeframe and scope. Nevertheless, the results and experiences from this project suggest there is potential for further commissioned work from statutory services to help support the expanding demands for palliative and end-of-life care over the next 10-15 years.

6		.0 Recommendations for Future Collaborative
Projects
Clearer Referral Pathways: Commissioners and service leads should ensure that referral criteria and the EoL doula role are fully understood by all referring parties, with specific guidance to prevent mismatches between patient needs and EoL doula suitability.
Integrated Communication Protocols: Developing joint training sessions, shared working agreements, and clear communication protocols between EoL doulas and statutory services will help clarify roles, foster trust, and streamline collaborative care.
Sustainable Funding and Service Models: To ensure true continuity of care, policymakers should explore funding models that provide more stable contracts for EoL doulas, enabling them to offer consistent support rather than ad hoc project-based involvement.
Public Education and Engagement: Broad public awareness campaigns are essential to normalise the role of EoL doulas, reduce initial scepticism, and ensure that when people encounter an EoL doula, they have a clear understanding of what support is available and how it can help.

7		.0 Conclusion
This initiative demonstrated that when/if EoL Doulas are supported by structured referral systems, effective mentoring, and robust data governance, they can make a meaningful contribution to national policy ambitions for palliative and end-of-life care. Through relational, family- centred, non-clinical support, EoL doulas addressed key gaps left by overstretched statutory services, improving the quality and continuity of care. The project contributed to a reduction in unplanned hospital admissions, an increase in people dying in their preferred place, and greater emotional preparedness among individuals and families.
Crucially, it offered a scalable and culturally sensitive framework for collaborative practice between community-based EoL doulas and formal health and care systems, aligned with the realities of demographic change and rising care complexity. Key learning highlights that future integration efforts must prioritise early-stage commissioning alignment, shared understanding of roles, and strengthened communication pathways to build trust, clarity, and infrastructure needed for sustainable partnerships and system-wide impact.
This project serves as an important case study describing both the potential and the practical complexities of embedding EoL doulas within formal health and social care systems. It underscores that while EoL doulas’ relational, time-intensive approach offers clear and significant value, realising this potential at scale requires careful system design, sustained collaboration, and investment in both workforce capacity and public understanding. This work points to a hopeful trajectory - one where compassionate, community-centred approaches to end-of-life care can evolve into an integral part of mainstream service delivery, provided that future efforts build on these critical lessons.

8		.0 Acknowledgements
EoLDUK would like to extend our sincere thanks to the following:
To the end of life doulas and project mentors who contributed their time, skills, and care to this project – Rita Ball, Linda Coppel, Gail Davidson, Aly Dickinson, Helen Jenner, Agnieszka Marek, Michael Nelson, Jo Lacey, Michelle Lumiére, Jane O’Riordan, Martin O'Toole, Polli Phippen, Harriet Radermacher, Claire Seward, Katie-Rose Whiting, and Sarah Young. As a pioneering initiative, this project demanded a high level of adaptability, openness, and courage. Your willingness to step into new territory and respond to evolving needs with flexibility was instrumental. This project would not have been possible without you.
To NHS South-west London for your forward-thinking approach and support, with special thanks to Dr Catherine Millington-Sanders, whose advocacy for our role was unwavering. Your encouragement and collaboration were a pleasure throughout the process.
To Emily Heritage (EoL, Frailty and Dementia Lead, In Reach KHFT, Your Healthcare), thank you for your energy, warmth, and compassionate determination as we worked alongside you and your team within the community. Your collaborative approach and consistent drive to get people the best care possible, made such a difference and ensured that people received the support they needed.
To the South-west London NHS and third-sector services who referred individuals to our project, thank you for the trust and compassionate collaboration you offered.
Finally, to the individuals and families our members had the privilege of accompanying: thank you for welcoming us into your lives at such a tender and significant time. Your openness, strength, and trust enriched this work beyond measure. We are deeply grateful for all you shared with us; your insights and experiences continue to shape how we offer person- centred, compassionate care at the end-of-life.

Martin O’Toole Contribution
Martin worked as Project Manager for this NHS project, as well as providing doula support to many individuals and their families through the project himself. Martin’s friends and colleagues at EoLDUK were devastated to hear of his death in November 2024.
Martin’s seemingly endless energy and enthusiasm for sharing our doula message of ‘doing death differently’, his way of bringing clarity by focusing on the humanness of any situation no matter how challenging, and his love of working in service of the dying, were the driving force behind this project. The majority of healthcare professionals who referred to our project told us that they did so after hearing Martin speak about EoL doulas and feeling that his message resonated with them. Martin’s hugely positive impact is evidenced by the many letters and emails we received from those he had supported and NHS staff he worked alongside which included the following:
“[Client]’s family were grateful for all support given by you and they were particularly complimentary of doula Martin. They were extremely grateful and amazed at the way he supported [client] in the very last hours of his life. We definitely need to use him more often”. - Senior Community Nurse, Your Healthcare.
“I must particularly commend Martin for his brilliant support. You saved us. His presence and assistance brought a sense of peace and reassurance when it was needed most. His compassionate care made a profound difference and offered solace during a challenging period. For that, I am eternally grateful. Thank you, Martin, for your kindness, understanding, and unwavering support. Your service is a beacon of light for those navigating difficult times, and I am truly thankful for the comfort you provide to individuals and families in need”.
Martin embodied our EoL doula values of compassion and community and will be greatly missed and never forgotten.

9.0 References

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