The figure of the doula in the community
The role doulas play has been present in communities throughout history. Providing care and support during major life transitions, including the end of life, is not a new phenomenon.
The social innovation of this role - being a professional doula - primarily lies in addressing unmet social needs by mobilising existing practices in new configurations that better respond to the challenges of contemporary contexts.
The word "doula" has assumed various historical forms, its meaning expressing a figure who provides care in the spheres of intimacy and affection, contributing to creating a comfortable and secure atmosphere during vulnerable moments in life.
Etymologically, the term "doula" derives from Greek and means a person who "serves", who provides care. This term was adapted to the professional world in 1973 by anthropologist Dana Raphael to refer to birth doulas, figures that provided emotional, practical, and/or informational support from preconception to postpartum.
In 2015, Henry Fersko-Weiss, an American social worker, founded the International End-of-Life Doula Association (INELDA) with the mission of training end-of-life doulas.
The presence of doulas in the Portuguese context
Observing the situation in Portugal, in the context where I grew up, the presence of these figures, often women, was evident. They were intricately woven into the community fabric and, although almost unnoticed, their presence was highly effective.
In my family, two women played that role: Cousin Agostinha and Cousin Teresa.
Both profoundly inspired me. I knew them from childhood, I would listen to their life stories, we would discuss our views on life and death, and I would witness their modus operandi.
Both were end-of-life doulas. As people said in those days, it was “in their nature” to care in circumstances of great fragility. Among other circumstances, people frequently asked them to accompany their loved-ones in the end-of-life and after death processes to help prepare the body with the family.
At the end of this article, I pay tribute to them by sharing the farewell letter I wrote in May of this year on the occasion of Agostinha’s passing and funeral.
These community figures did not acknowledge themselves as doulas, nor were they recognised as such. This is a term that has been recently reclaimed to reframe an age-old role that has been disappearing in most Western societies.
Alongside the passing of this generation that still possessed this community knowledge and closeness, integrated into international movements (for example, related to hospices and in Compassionate Communities), new solutions have been developing to dignify and fill the gaps in end-of-life support.
In the space of the past four to five decades, this end-of-life community universe, marked by proximity and mutual aid, has gradually lead to people regularly resorting to intermediary services in the end-of-life and death process.
As studies have clarified, such as Epidemiological study of place of death in Portugal in 2010 and comparison with the preferences of the Portuguese population in 2010, conducted by researcher Bárbara Gomes, as well as research carried out by José Nuno Ferreira da Silva, published in the book A Morte e o Morrer (Death and Dying) in 2012, Portuguese people now mostly die in hospitals or social institutions rather than at home.
Post-mortem care for the body has been almost exclusively transferred to funeral agencies, as evidenced in the study Viver da Morte (Living from Death) by Rita Canas Mendes, about the funeral industry in Portugal.
In this context, where significant improvement in end-of-life health and social care has been observed, there has also been a reconfiguration of family and community in the end-of-life landscape. Furthermore, there has been a decrease in the knowledge that people and families have about the dying process as well as decreased community involvement in these life stages. I would say that death has become more predictable and less visible.
The end-of-fife doula community in Portugal
The end-of-life doula community in Portugal is part of a broader international movement that seeks to embody new solutions in the end-of-life context. It has indeed been gaining recognition whether for the training it offers, the activism it seeks to promote, or the actual support it provides, whether voluntary or professional.
Thanks to the pioneering efforts of Ana Catarina Infante (who was at the time a birth doula and a palliative care nurse) and the Amara, Association for Dignity in Life and Death, the first end-of-life doula course in Portugal was developed in 2019.
The views of our community include the vision to contribute to expanding the understanding of death as a natural and integral part of the life cycles, a source of transformation.
The processes of ageing, illness, grief, and suffering are approached through presence, the ability to listen, and support in a standpoint that integrates the various dimensions of the individual and the family.
What needs do end-of-life doulas address?
Let's start by clarifying some common misconceptions.
End-of-life doulas do not provide healthcare; they can, whenever possible and preferably, work closely with the teams that support the person or the family, but they do not provide Palliative Care in itself. Palliative Care is inherently a team-based approach.
A doula’s support is differentiated by creating an intimate relationship within the private life and various other spheres of the person's life, which may involve support at home, in a hospital, accompanying the person to a service provider, at a funeral, among other contexts.
What Doula Support Includes
We respond to emotional, spiritual, physical, informational, and practical needs, among others.
We accompany individuals at the end of life, their families, and significant people, always in accordance with the individual's wishes.
We accompany people at any stage of life who want to prepare for these processes and integrate them into their lives more consciously, regardless of whether they are experiencing illness or some form of fragility. One of our mottos is to help people live better and integrate different losses and grief throughout life.
We assist in the creation of advanced healthcare directives, we clarify, inform, and educate about end-of-life symptoms and signs.
We support caregivers with self-care strategies, practical planning and reorganisation in response to the changing circumstances.
We raise awareness of new perspectives in challenging situations, particularly the importance of ritualisation.
Our presence aims to create a more serene, secure, and comforting atmosphere.
The care we provide can encompass the last days and hours of life, after death care, such as body preparation, support during funeral ceremonies, and the grieving process throughout the whole life cycle.
Each doula has their own specialisation, and in our community, we also seek to complement each other. For example, one colleague may be a physiotherapist, another may be a nurse, and another may feel more inclined to support in cases of gestational or animal loss.
The type of support we provide is tailored to the individual/family and based on the doula's experience. In the next article, I will thus further develop the concept and model I offer - Transition Doula.
Dear Agostinha,
When I received the news of your death, it was raining abundantly in the Algarve, which is a rare occurrence in these parts. Nature was already mirroring the tears that flooded my soul.
I will miss you so much, but I know where to find you... in a blossoming quince tree, when I hear quick steps on a cobblestone path, or someone calling in the distance, in infectious laughter, in any candid gaze I may come across, in firm decisions, in a tolling bell, or in a vigil, whether silent or brimming with living stories.
To me, you will always be a tree, tall and leafy, a tree that cares for all beings around it, with love and attention expressed as a palpable, authentic presence.
Before a tree dies, it passes on all its knowledge to its surrounding trees and only then will it fall over while still standing straight.
You were one of the people who inspired me the most in life - you and our dear Teresa - you both left me a legacy that I feel deeply honoured to carry forward. You and Teresa were the doulas I met in life, and with your living testimonies, I learned:
To see the invisible within the visible
To embrace death, to close the eyes of the dead and open those of the living
To keep vigil
To be a presence through silence, memory, humour, and through the ability to endure beyond pain because when it’s shared, it’s transfigured
With you, a part of me dies, and a part of you stays with me. It's this legacy that I want to continue to embody.
I thank you for having kept vigil with my father during his transition, and for each and every person you accompanied in the course of your long life, which was as large as your hands, as wide open as your arms.
I know that life wasn't always easy for you, but you didn't dwell in suffering. You could always end a conversation on a high note with your encouraging, spirited, and optimistic words.
I’ll miss going to your house, pulling the cord, calling out to you, and stepping in. That's how you and Cousin João were, an open house, always. And a generous home, there are no quinces like yours. After my father passed away, you would always keep them for me. To me, the quinces symbolize you gifting your life to others. And so it remained until the end. On the last day we saw each other, you asked if our orange tree still had any oranges. When I confirmed that it didn’t, you didn't hesitate. The next thing we knew, you were somehow perched in the orange tree, picking oranges for me!!!
From the days we said goodbye, I also remember that you continued to teach until the end, how to prepare a St. John's Wort ointment for the pain.
And so are trees: their entire lifetime is a gift because they know their place in the whole and they embrace it. And when they die, they continue to nourish the earth, they are the fertile humus from which life is generated 😊 I carry you in my heart, dear Agostinha. Rest in peace!