“The bravest are surely those who have the clearest vision of what is before them, glory and danger alike, and yet notwithstanding, go out to meet it.”Thucydides 460 – c. 400 BC
The term ‘doula’ comes from the ancient Greek meaning “a women who serves”. Birth doulas became popular in the 1970s and the term was used to describe lay-trained women providing non-medical assistance during and after pregnancy.1 2
An end-of-life doula (EOLD) is used as an overall term to identify non-medical individuals, who provide a diversity of non-medical support (social, emotional, practical and spiritual) for people nearing their end-of-life. There is no world-wide mutually agreed descriptor for this role, so the terms “death doula” or “death midwife” are used interchangeably as well.
Over the last 20 years the EOLD role has evolved as an independent community-based role, where practitioners offer a fee-for-service on a range of pre-death and post-death needs for the individual and their significant others. An EOLD empowers individuals, is a catalyst for developing compassionate communities, whilst their work reduces the burden on the health care system.
Prior to Covid, there were approximately 1 500 deaths per day in South Africa. In a society where we have been conditioned to avoid the topic of death and dying, many individuals are rushed to a nursing home or a hospital for their final days, leading to lack of choice, isolation and often these individuals transition without closure on multiple levels.
Yet, from the second of our birth, our death is inevitable. There is no antidote. The large majority of our family and friends remain in silence, unskilled in broaching the subject, scared to offend or damage relationships. No wishes are expressed, no arrangements are made. When our beloved departs, we second guess what they would have wanted and hurt each other, fighting over non-allocated spoils left behind whilst enriching the legal profession. In the interim we continue to support elaborate and expensive rituals to honour the dead, having done precious little to provide closure, support or comfort for the dying.
What does an EOLD do?
An end-of-life journey for yourself or someone you love can be very challenging, confusing and overwhelming. There are a variety of things to plan for and manage, options to explore, choices to make and medical and life issues to navigate.
Everyone around you has needs, opinions and advice. As with all big events in our lives it helps to make a plan, to sort through all the options and choose our preferred way forward.
An EOLD guides you and those close to you through the process. They provide education on what to expect and act as an advocate with medical and nursing staff, the hospital or other care providers, funeral homes and other necessary services for closing out on legal, relationship and other practical death issues.
An EOLD will give you support, assist you to sift through the available information, allowing you to look at all the pros and cons, allowing you to make informed choices, sharing with you options you may not have known about all along the way.
An EOLD provides a shoulder to lean on, an ear that is empathetic, a network to resources and an understanding of your journey and all it entails… assisting you to fulfil this life journey as you choose to.
An EOLD will assist in making the road ahead an intimate, sacred and rich experience for everyone involved, whether medical support is required or not, whether at home, in a hospice or hospital – creating ‘home’ wherever you are.
EOLDs work within a Scope of Practice and a Code of Ethics, both self-regulated. As yet, there are no formally accredited courses, or accredited teaching schools for this work. Instead, a handful of caring, professional, like-minded individuals provide education and training on this topic.
Some services that a doula may provide:
- Companion to the dying. A supportive, non-judgmental presence; an active listener, who provides nurturing and vigil planning.
- Finding peace and acceptance. Helping the patient to find meaning in their life and reflecting on what their contribution was to this life: An essential aspect of doula care.
- Helping to facilitate unresolved issues. Doulas are skilled to facilitate unresolved issues that may be identified or to refer if out of the scope of the doula’s practice.
- Information sharing. Education as needed and desired (e.g. what to expect during the dying process). Information provided is non-biased and evidence-based. While encouraging informed decision-making, doulas refrain from promoting a specific choice or course of action.
- Resources and referrals. When client needs are outside of the doula’s scope of practice, personal/professional boundaries, or experience, the doula makes referrals to appropriate resources.
- Spiritual networker. Doulas establish a spiritual network within their community to provide access to available religious services.
- Advanced care planning facilitator. Creation of an advance airective. A legal document that will stipulate the patient’s wishes for healthcare. Being an advocate and speaking for the patient if they are not able to speak for themselves.
- Household support services. Can provide household help, running errands, transportation to medical appointments and so on. Services provided by individual doulas will vary in this area as each establishes her/his own professional boundaries.
- End of life planning. Helping the patient and family plan for the wake, funeral and eulogy. Exploring options in association with funeral homes.
- Creating remembrances. Helping the patient to document his/her meaningful life stories to leave behind for their loved one.
- Respite caregiver. Provide temporary relief for the primary caregiver so they can have a short-term break from their duties.
- Home funeral guide. Working within the legal framework and with a funeral parlour to provide logistical support for the funeral.
- Bereavement services. Support for the mourning family and friends
What kind of people do death doula work?
Individuals who are moved to facilitate this journey. Mostly it is a soul calling. EOLD work is positioned for non-medically trained individuals, but many in the medical profession, such as doctors, nurses, physiotherapists, social workers do this training and add these services to their portfolio. In South Africa there is a huge need for non-medical individuals to serve the community and ease the burden on the health care system. This is also a business opportunity for those who enjoy this type of work
Should you consider doing this type of work?
If you answer “yes” to five or more of the following statements then perhaps you might want to explore this most important role.
- You are drawn to be with the dying.
- You are comfortable around death, dying, grief and loss.
- You wish dying and death were viewed differently in your culture.
- You see how the study of death and dying offers the potential for life transformation.
- You want to bring end-of-life resources to your community.
- You want to become an end-of-life doula coach or guide and have no healthcare background or experience or credentials.
- You want to build a doula business in an ethical and efficient way.
- You are a committed healthcare professional already working in the field and want to deepen and create meaning in your work.
- You have been profoundly affected by the death of a friend or loved one (positively or negatively) and know that this is where you want to serve.
- You are a family member who may be overwhelmed and faced with caring for an ageing family member or terminally ill friend.
- You are drawn to helping those who are experiencing grief and loss.
- You want to know more about this topic for your personal growth and self-development.
- You are deeply interested or curious about death and dying.
- You want or need information specifically designed for end-of-life care.
- You work in a funeral parlour and want to know more about this work.
- You already do volunteer work of this nature in the community or in a hospice or hospital.
Most individuals are only introduced to the concept of an EOLD once they receive a diagnosis of a life threatening illness or when a loved one slowly deteriorates from a degenerative condition. Know that it is perfectly acceptable to explore and plan for your end-of-life journey whilst you are completely healthy. As you explore concepts around death, interrogate your legacy and become informed on matters pertaining to your mortality, you enhance your quality of life and become more conscious of your patterns of thinking and choices you make. In essence you can choose to lead a more intentional life.
1 Fukuzawa RK and Kondo KT. A holistic view from birth to the end of life: end-of-life doulas and new developments in end-of-life care in the West. Int J Palliat Nurs 2017; 23: 612–619.
2 Rawlings D, Litster C, Miller-Lewis L, et al. The voices of death doulas about their role in end-of-life care. Health Soc Care Community 2020; 28: 12–21.
3 Rawlings D, Litster C, Miller-Lewis L, et al. The voices of death doulas about their role in end-of-life care. Health Soc Care Community 2020; 28: 12–21.
4 Corporon K. Comfort and caring at the end of life: Baylor’s doula program. Proc (Bayl Univ Med Cent) 2011; 24: 318–319.