Death Doula work in context; My offer, in brief

26th December, 2023, 8:34 pm

The end‐of‐life care arena across the life course is changing, not least in the global North. In many western modern societies, there is a rising ageing population. These older groupings are living longer with increasingly complex needs. Added to this is low fertility in the western world which means that more people are living alone at the end of life (Pleschberger & Wosko, 2017) Also, an increasing number of older people will die without a notable disease or die whilst under the care of a palliative care team. Children with complex needs are also living longer and in need of critical care as new interventions add years to lives once deemed to have short spans.

End of life is also taking place within transforming health systems, where integrated care systems can at times lead to confusion as to who is responsible and accountable to capturing the needs and advocating on behalf of those facing death when medical interventions have come to an end. Some have argued that an emphasis on medical interventions has led to healthcare systems that lack the infrastructure and capacity to support those who are caring for our dying in the community.  Krawczyk and Rush (2020)argue that workforce changes within health care systems and within the wider world has led to the continued low status attributed to care professions, with shifting societal attitudes and more flexible and transient family structures leading to less involvement of family in end of care support.

At the same time, there has been a growing push to find new ways to address end of life care, palliative care and bereavement, with a focus on (i) moving dying and death back to the community as it was decades ago, and thus working against the dominant death avoidant culture that prevails (Kellehear, 2013), (ii) re-balancing the current over-medicalisation of treatment and (ii) exploring for new roles and models in end‐of‐life care to address the current deficits  in end of life systems (Poulos, Harkin, Poulos, Cole, & McLeod, 2017).

Importantly for me when exploring this topic, is the eco-system I will be part of. As the recent Report of the Lancet Commission on the value of Death (2021) makes clear, the landscape is complex, and systems and professional groups (i.e., medical teams, social services, nursing, primary care, palliative care, funeral sector and bereavement practitioners) interact across the course of a person’s declining health and/or dying journey.  What’s more the overall ‘system of systems’  is agile. and can adjust to new roles (i.e., recent roll out of consultant nurses and the now embedded role of birth doulas), just as small changes within one element of this system having the potential – by virtual of the interconnectedness of all those involved – of impacting overall delivery.

Ok.

So, the work of death doulas takes place in a dynamic, agile eco-system and within the broader context – in Wales at the very least – of national strategic health and social agenda rooted in finding new ways of caring for the dying.  This is the context in which I will work and deliver. I think knowing the landscape is important as it allows me to build a niche and clearly articulate the role and function of death doulas. It is the awareness of the many different other players within this landscape that is important and the challenges, standards, codes and legal and professional requirements, contexts and frameworks they have to operate within. My role as a death doula is to add value, and to mark out my areas of invaluable input and expertise to the benefit of the client.  

Let me provide an example.

In order to prioritise my client’s needs and wishes, I will ensure that part of my contracted work is to capture and write out what these are and how they wish for them to be carried out during their dying journey. Knowing the context in which I am working and the many other professionals who may also be delivering care and support, my training in 2023 has allowed me also to map their needs alongside current end of life standards and procedures and share key information to my clients and their families. So guidance such as All Wales Guidance: Care Decisions for the Last Days of Life (2021) is very helpful as it provides the wider context for the last stages of death and also (perhaps belatedly if such matters have not already been discussed) allows for individual care plans to be discussed.

Death doula role and position

While there is no mutually agreed descriptor of this role, the appellation ‘end-of-life doula’ is increasingly used as an umbrella term to identify lay people, primarily women, who provide a diversity of nonmedical supports—social, emotional, practical, and spiritual—for people nearing the end of life, including those close to them.  Krawczyk and Rush (2020)

The Soul Companions Introductory module on death doulas covered our origins. The term doula emerged in the 1970s as part of the natural birth movement and was used to describe lay-trained, community anchored women who provided support and non-medical care to those giving birth. End of life doulas work on a similar model.  While a range of names are used to describe their work (i.e., death companion, soul companion, death midwife, end of care midwife), death doulas provide informed companionship and resources before, during, and after death. In some cases, support may include after-death care of the body and funeral planning education or services. Advocacy is important for some, and this may include community education and outreach, and social events such as advance care planning work- shops, and death and grieve cafes.

Death doulas do not take the place of care support staff, and nor do they operate as health or medical professionals. The operate as quasi-professionals although currently webare not regulated as such. Offering bespoke services, the focus is on the person dying and their support circle, first and foremost. We operate in a range of settings, and can be found in palliative care centre, care homes, hospitals and in the homes of their clients.

It is important to note that decades ago in the global North, death took place at home and people within a community were death literate, competent and knowledgeable. Much of this knowledge has been stripped over of the decades. The role of the death doula is emerging and transforming, and I suspect in the coming years the role will - much like birth doulas – become more settled and embedded, providing a range of bridging, buffering and core services that match the needs of both the health and social system the role is part of, and the needs of their clients.  

My offer, in brief

As of December 2023, I am still working on my offer. Based on the principles and values that ground my work, I see myself

• Visiting the dying in different settings for comfort and social companionship (the frequency of visits is based on the agreement between both parties)

• Offering support in terms of end of life documentation, most importantly, the capturing the written wishes and desires of the dying person

• Providing emotional and spiritual support

• Supporting the family, providing information, leaving room for conversation, facilitating the sharing of the dying person’s wishes

• Holding space if families decide to look after their loved ones at home

• Advocating for the dying person with respect of, and sensitivity to, the religious and spiritual beliefs of the family

• Developing as well as incorporating new and ancient rituals and practices, drawn from a range of spiritual and religious tenets

The above is the long version. In short, I can be contracted to deliver the following ‘stand-alone’ or suite of services:

• End of life care and support

• Death, Dying and Loss Education

• Legal Matters – Getting the paperwork completed.

• Consultancy, Research and Public Speaking

Till death do us part: A company that provides the end-of-life care, education, and guidance you and your loved ones deserve. Looking for a compassionate and knowledgeable end- of- life planner or death doula? At Till death do us part, we understand that the end-of-life journey can be an overwhelming and emotionally challenging. journey. The role of a death doula is invaluable in navigating the complexities of the end-of-life. Death doulas can be instructed to act as your advocates, ensuring your needs and wishes are respected and understood.  By choosing Till death do us part you will benefit from having a safe space to share your fears, concerns, and hopes. Through education and consultation, the aim is to empower you to make well-informed decisions that align with your values and preferences, and to support your family as they prepare for your death.

We offer a range of services including:

·      Assistance in future care planning (to help people plan how they wish to journey towards death and die with dignity)

·      End-of-life care and support (offering non-medical support – social, spiritual and emotional)

·      Death, dying, and loss education and advice (for individuals and their families, as well as for organisations and companies)

·      Consultancy, research and public speaking

Additionally, we make three service delivery promises to provide you with the highest standard of care. Firstly, we promise to always prioritise your comfort and well-being in mapping out your care and support wishes, desires and requirements. Secondly, we promise to respect your unique beliefs, customs, and wishes throughout the end-of-life journey. Lastly, we promise to be there for you and your loved ones as agreed, offering support and guidance during this difficult time. Contact Till death do us part today to learn more about our compassionate end-of-life services. Let us support you and your loved ones on this sacred and transformative journey.