Looking for a revolution: dismantling death-phobia

16th December 2023, 8:154pm

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to "keep her safe."

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

 

Death is commonly understood to be the ending/stopping of vital functions, marking the end of life. From a medical perspective, death is often defined by the irreversible cessation of cardiorespiratory functions. However, cultural, religious, and ethical considerations can influence the understanding of death. For instance, in Islamic views, death is defined as the separation of the soul from the body, which is determined by the absence of vital signs and the irreversible cessation of human voluntary acts, in addition to clinical symptoms.  What is clear is that despite the fact that our understanding of death is influenced by various factors such as cultural, religious, and social beliefs, the fear of death in the Global North at least, remains a dominant societal phenomenon and multi-faceted construct.

The article ‘I Know You Love Me — Now Let Me Die’ from which the above excerpt is drawn, is more than a lament by a physician of the often excessive care of older people at end of life. It is a damming indictment of the over medicalisation and often dehumanisation of the dying process. It is, indeed, a damming testimony of the dominant (but by no means exclusive) western cultural and social context in which dying and death have come to be understood and addressed, and its impact on the bodies, minds, spirits and souls of the dying, their support network of loved ones and their communities.

I get it. I understand the pull of being death avoidant.

In contemporary society, we often tend to avoid discussions and confrontations related to death, which can be attributed to several factors. The fear of death, also known as death phobia, is a significant aspect that influences our death-avoidant culture. Here are some possible reasons for this phenomenon. As discussed in my blog about on dying and death, there is the fear of the unknown. Death is inherently uncertain and mysterious. We lack concrete knowledge about what happens after we die, which can be unsettling for many individuals. As a result, people may subconsciously avoid engaging in conversations about death to alleviate their anxieties. As discussed at the start of this blog, with advancements in medical technologies and interventions, death has become increasingly medicalised. Moreover, traditionally, death used to occur within the family unit, and individuals would often witness the dying process first-hand. However, in modern western times (and in high- and middle-income countries in particular), death is typically experienced in hospitals or care facilities, distancing people from the reality of death and making it more foreign and fearful.

Other factors include:

Cultural Taboos: Certain cultures and religions have established taboos and strict social norms surrounding death and dying. These norms may discourage open discussions about death, leading to a death phobic environment.

Loss and Grief: Death is closely associated with loss and grief, which can be extremely distressing. As a defence mechanism, individuals may try to shield themselves from experiencing or acknowledging these emotions.

Conversations about death and dying can be difficult: Doctors, health and social professionals patients, or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate treatment at the end of life.

Shifting the narrative

As a death doula, my focus is on finding ways to work alongside the rising number of people seeking to dismantle the death phobic narrative and to reclaim death in ways that place life and death on the same conceptual plane, and that work to ensure that people learn, seek out and find ways to plan and walk towards dying with levels of peace and agency. With this must come rebalancing of life and dying expectations and the need to address a host of societal inequalities which lead to certain population groups being negatively impacted at death as they have been during their entire life course. This rebalancing is at the heart of a recent publication the Lancet Commission on the value of death: bringing death back to life(2022), which states.

Death, dying, and grieving today have become unbalanced. Health care is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols… Rebalancing death and dying will depend on changes across death systems—the many inter­related social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed. A reductionist, linear approach that fails to recognise the complexity of the death system will not achieve the rebalancing needed. Just as they have during the COVID­19 pandemic, the disadvantaged and powerless suffer most from the imbalance in care when dying and grieving. Income, education, gender, race, ethnicity, sexual orientation, and other factors influence how much people suffer in death systems and the capacity they possess to change them… Death and dying must be recognised as not only normal, but valuable. Care of the dying and grieving must be rebalanced, and we call on people throughout society to respond to this challenge (p.837 – 838)

Based on a global view of how death and dying need to be re-envisioned in ways that address the stark differences between high, middle and low income countries, the Commission sets out its vision of a rebalanced system of care and support rooted in five principles:

• The social determinants of death, dying, and grieving are tackled.

•  Dying is understood to be a relational and spiritual process rather than simply a physiological event

• Networks of care lead support for people dying, caring, and grieving.

• Conversations and stories about everyday death, dying, and grief become common.

• Death is recognised as having value.

Fortunately, this these principles can be traced in Wales’s response to the growing need to provide a national framework on end-of-life care, dying and death.

The Quality Statement for Palliative and End of Life Care for Wales (2022) introduced national quality attributes - safe, timely, effective, person-centred, efficient, equitable -  that aim to improve the quality and consistency of palliative and end-of-life care provided across the country. These standards emphasise the importance of person-centered care, ensuring that patients and their families are involved in decision-making and receive comprehensive support.

The All Wales Guidance: Care Decisions for the last days of life (2021) provides guidelines for various healthcare professionals involved in end-of-life care, including primary care, hospitals, and social care setting, with a specific focus on the needs of individuals nearing the end of life and the promotion of compassionate and respectful care during this transition.

The National Framework for the Delivery of Bereavement Care (2021) provides principles-based framework for commissioners and providers of bereavement care and support.

In all of this, understanding the societal aversion to death and the need to shift the dominant dying narrative is crucial.

Our palliative and end-of-life policies, frameworks, and standards that have recently been rolled out in Wales are set to play a crucial role in addressing death phobia by promoting open discussions about death, providing quality end-of-life care, and supporting individuals and their families through the dying process.

The strategic and policy scaffolding are in place.

I have a strategic national context in which to frame my work as a death doula.