In response to the article by journalist Helena Bento, Cuidar de quem está no fim da vida (Caring for People at the End of Life - to read the full content of this article, a subscription to Expresso is required), published by Expresso on 25 August 2023, I want to publicly thank Expresso and the whole team for giving a voice and face to this reality, shedding light on the role of doulas and the path of the end-of-life doula community in Portugal.
With this post, I aim to include topics that have emerged in comments on Expresso's social media, focusing on the aspects that have affected people the most, those that generate discomfort, and those that require more information and in-depth exploration.
Families, Communities, and Services in the End-of-Life Landscape
As I explained in the Vozes da Transição (Voices of Transition) podcast (available at the end of this article, in Portuguese), based on the results of my latest research, significant transformations in the productive system have altered the landscape and the actors in the field of end-of-life care:
Families: Changes in the time available for caregiving
Work and consumption have become central in contemporary societies, leading to changes in family and productive models. These changes are evidenced by the trend, since the 20th century in Western societies, of a decrease in families’ available time to provide care.
On the one hand, the caring for family members and for the local community was largely carried out by women, and the labour occupancy rate of women has been increasing, creating challenges in balancing family and professional life.
In our priority scale, free time is less directed towards visiting and supporting people in vulnerable situations and more focused, for instance, on leisure and entertainment, because we tend to give more importance to personal development and fulfilment.
On the other hand, this support has increasingly shifted to the institutional sphere, particularly to healthcare services, social institutions, funeral agencies, among others.
The painting illustrating this post, La Dame de Charité by Jean-Baptiste Greuze, depicts a visit to a sick man in 18th-century France. In my opinion, what makes it unusual for contemporary times is that this woman is accompanied by her daughter, a child she is introducing to the importance of providing support and care in times of vulnerability.
Communities: From acquaintances to formal movements
When we think about the configuration of communities in Portugal, we currently live with less closeness, less knowledge of one another, and less mutual assistance. However, contrary to these trends, there has been a higher increase in formal volunteering activities integrated into institutions and into movements that seek to revive a sense of involvement in the community.
I'd like to highlight the international movement known as Compassionate Communities, which in Portugal is known as Portugal Compassivo.
This movement, in which I am involved, aims to embody the resurgence of community care networks, recognizing that the commitment to caring for others in moments of vulnerability is the responsibility of society as a whole, and not solely of the public services.
Services: accessibility and equity in end-of-life care
Looking at the Portuguese reality in terms of end-of-life needs and support, according to the Report of the Observatório Português dos Cuidados Paliativos (Portuguese Observatory for Palliative Care), released in 2020, regarding the Supportive Activity of Palliative Care Teams/Services, "the effective universal coverage of palliative care in our country is far from being achieved and reveals profound asymmetries at the district/regional and typology levels."
Regarding equity in access to palliative care, Portuguese public services fall short of "internationally recommended minimum requirements." Quoting the mentioned report, "approximately 102,000 adult patients and around 8,000 paediatric patients needed palliative care in 2018," and only "25,570 adult patients and 90 paediatric patients accessed this service, which indicates an accessibility rate of about 25% for adults and 0.01% for paediatric patients."
In addition to these numbers, there is a "significant support workload for professionals in palliative care teams" and a "very low weekly working time dedicated to each patient," which jeopardizes "the completeness of care and attention to the overall and timely needs of the patients ascribed to them," as "existing human resources are clearly insufficient for integrative health care."
If we consider that these factors are real barriers to "true universal healthcare coverage," and if we look at "professional areas outside the field of medicine and nursing, they almost appear incipient in the time dedicated to patients, leaving the question of whether we are indeed dealing with integrative health care for patients with palliative needs." Family intervention and spiritual care are two dimensions that get very little support from services.
If we delve into situations of people at the end of life who were not referred to and/or supported by any Palliative Care Team/Service, the picture isn’t as clear but remains equally unsettling.
Many people at the end of life turn to health centres and/or hospital emergency services, which are not always equipped to intervene in these cases. Although there may be an increasing number of healthcare professionals qualified to provide palliative actions, those working in this sector know that the reality still falls far short of the real needs.
Most families who seek my services during the last weeks/days of life have often previously turned to emergency services with uncontrolled symptoms, such as pain or breathlessness, and were sent home with no solution.
This is one of the most common indicators in the support I provide, as families tend to be unaware of end of life signs and symptoms, as well as the way in which services operate, and they need information, mediation, and/or referral to Palliative Care Teams/Services.
I do not want to devalue the work of healthcare professionals, especially in a hospital emergency context. I would like to express my respect and admiration for healthcare professionals (doctors, nurses, healthcare assistants), who are also heavily affected by the aforementioned support workload.
I would rather clarify that there are a few cases of end-of-life interventions that have not received a response from either local networks (families, communities) or social and healthcare services, and each of us is indispensable in our particular roles.
It is furthermore imperative that we increase our knowledge of these matters to better support individuals and families in the end-of-life process.
I would like to share a beautiful story experienced by a nurse with whom I have trained in Palliative Care. Patrícia, during her shift in the emergency department, working with a high number of requests beyond her capacity to respond and be present, noticed two people lying on stretchers in opposite areas of the room who were looking at each other.
Lacking any other way to assist them, she had the utmost sensitivity to move the two stretchers together. These two people died holding hands, within one minute from each other.
This story illustrates the perspective and beauty of the philosophy of Palliative Care that was already present in Patrícia but also reveals the stark reality of services and how often people die in Portugal in such circumstances.
New responses are necessary for end-of-life
Researcher Bárbara Gomes, a palliative care specialist at the Faculty of Medicine of the University of Coimbra, has been studying the relationship between end-of-life care and people's expectations, needs, preferences, and priorities.
In an interview, she mentioned that there are "two key characteristics that define how Portuguese society deals with advanced illnesses and end-of-life. On the one hand, there is a tradition of extended family support - we try to care for our loved ones at home, a mission often associated with the women in the family. On the other hand, we are extremely dependent on hospitals - we believe it’s where we will find the best healthcare."
She notes that Portugal has one of the "highest hospital death rates in the world" and discusses the unsustainability of this "hospital-centric" system. She emphasizes that "we need to understand that care should revolve around patients and their families, not the other way around.
We need a Copernican revolution in how we support people with advanced illnesses and their families. We have to rethink and create new solutions." It is in this context, as reported by journalist Helena Bento, that "doulas have filled a 'void' left by families and public services."
I will soon post about the particular aspects of the role of doulas, one of which is raising awareness and educating individuals to view our lives as part of natural cycles and constant transformations, with death being a natural process linked to the nature of our bodies.
May we draw inspiration from the Japanese poet Ikkyūp:
Like vanishing dew, (…) thus should one regard one's self.