death is the way of life
Prologue
I’ve always been interested in death! My mother was a nurse working night shifts on a ward for cancer sufferers and once home from work I would eagerly ask her, ‘Who died?’ My parents always spoke about death, it was never to be feared and my interest was only further piqued when a family member died suddenly outside our house after breakfast one Sunday. Years later, on informing my father of the death of my 20-year-old cousin, he said ‘Laura, death is part of life’. However, I personally experienced the full emotional pain and turmoil of death just two months later when he himself suddenly passed away aged 52. I was struck by how literal death is and how, despite the promises of those who meant well, I was left to grieve alone. I had no idea what grief was nor how it was affecting me. The experiences I have had since my father’s death and the subsequent loss of many family members have fuelled within me a desire to demonstrate to others that death is indeed a part of life. I, therefore, intend to help normalise the event of death by providing a supportive space for planning, for healing and for those who are facing their own end of life process, or the imminent death of a loved one.
Introduction
Time and again I have observed that the suppression of emotions, the lack of meaningful communication, spiritual denial and the confusion of death, lead to more pain and sorrow that manifest in a range of physical and mental health ailments, often treated as maladies to be medicated against. Within this report, I will highlight various cultural practices and beliefs from around the world that may help minimise the sudden blow that often accompanies death and the ways in which it is prepared for before concluding with a summary of the main points.
Literature Review
Hermione Elliott, Director of Living Well Dying Well, describes the culture around dying and death in the UK as alienated, much feared and somewhat taboo. As a result, she states that we are “inwardly unprepared and outwardly unskilled at dealing with it” (Elliott, 2011; p1). Death In Practice (D.I.P.ism) is designed to fill the gap between the diagnosis and the bereavement process. This involves taking into consideration the concept of Total Pain formulated by Dame Cicely Saunders, founder of the hospice movement in 1967. The Total Pain theory includes the physical, psychological, social, emotional and spiritual elements of the dying and death process (Clark, 1999). Hokey, Katz and Small explain that bereavement is the process of losing the relationship of a close friend or loved one. Grief is the reaction to that, or any kind of loss, it is an often painful physical emotion that can be experienced both internally and externally, and it is within the time of mourning that such grief is predominantly expressed (2001).
“Each culture has its own approach to dealing with loss. To understand each culture’s way of dealing with death may require extensive knowledge of its history and social structure, economic and political sectors. Beliefs and practices concerning death and mourning should be thought of not as a matter of taste but as extremely important in a person’s life” (Grisaru, Witztum, & Malkinson, 2008; p3). This sentiment is echoed by Irish, Lundquist, & Nelsen, (1993) who assert that “dealing with dying, death, and grief attests to the great need for sensitivity and understanding, both within institutions and on the part of individual practitioners” (p5). Indeed, cultural concerns are an important factor in catering to the needs of the bereaved in line with their beliefs. For example, Karadag, Kilic, Ugur, & Akyol, (2019), explain that according to Judaism, death is the heaviest of punishments and is perceived as a horrible fact, in contrast “Muslim societies like Turkey, view death as an elevation of the human soul to the presence of Allah by taking it from the body” (p2). Despite this holiest elevation, a study of Turkish nurses carried out by Karadag, etal, and similar studies previously carried out in Turkey have unfortunately shown that training provided for both doctors and nursing staff providing end of life care is widely viewed as insufficient.
Hospices
In America there are three types of hospice. Medicare-certified hospices are regulated through medicare or insurance companies. Social Model hospices provide a place between the homes of the dying and an institution where care is delivered in a manner that focuses on the psychosocial and spiritual needs of the individual. Donation supported hospices provide professional volunteers such as clergy, social workers, nurses and physicians who tend to the dying and their families (Bonavita, Yakushko, Morgan Consoli, Jacobsen, & Mancuso, 2018). Bhatnagar and Lagnese (2019) explain that such facilities are popular with an estimated 1.4 million people receiving hospice care in the most recent decade to 2016 from the 4382 Medicare-certified hospices in operation at that time. Over 50% of patients were cared for in their own homes and around 42% were cared for in nursing homes. Whilst such figures are impressive, they go on to explain that geographic, race and ethnic variations do affect the availability of the services. Almost 50% of Caucasians who died in 2016 used hospice care, and the 31%-37% of people of African American, Asian or Native American descent using the facilities were referred to the hospice far later than their Caucasian counterparts and passed away at a much quicker rate (Bhatnagar and Lagnese, 2019).
Whilst the Buddhist perspective on life is often viewed as pessimistic, the fact of the matter is that we will all die. In correlation with Dame Cicely Saunders assertions of total pain, Nichiren Buddhism similarly acknowledges three kinds of pain, physical, psychological, and existential. Choudhury (2016) explains that all three pains are united at death and whilst “medical and social systems can help to alleviate the pain of the first two categories. Overcoming existential suffering caused by the idea of one’s own mortality can be possible through the concept of eternal life, which helps mitigate the fear and apprehension about death” (p3). For the Buddhist then, death is not the end of one’s existence and it is this type of reframing that can bring the kind of comfort that I would be interested in sharing.
D.I.P.ism Defined
D.I.P.ism is a non-medical care incentive that acts as an intermediate when medical terms and procedures are too heavy for the recipients to absorb, and when psychological, social, emotional and spiritual elements need to be negotiated for planning and healing.
Moreover, the enterprise has economic, social and environmental benefits deeply embedded within its structure, the result is the offer of a more person centered provision that facilitates the enhancement of informed decision making, social inclusion and community regeneration. By endeavouring to normalise death, D.I.P.ism creates a space that enables those who have personally experienced the loss and the turmoil it causes; to help others working through those same experiences. This is how D.I.P.ism affects change.
As an End of Life Guide and qualified hypnotherapist specialising in End of Life and bereavement therapy, I will work with those coming to terms with their diagnosis and can help guide them through their process. I will work with individuals and intimate groups experiencing bereavement, as they work through the five stages of grief as identified by Kubler-Ross: denial, anger, bargaining, depression and acceptance (Stroebe, Schut, & Boerner, 2017). As a Funeral Celebrant, I can conduct funerals. I will therefore offer this service to the families I have personally worked with, in order to help provide a tailored farewell for those who have transitioned.
Conclusion:
This report provides a brief insight into the aims and objectives of D.I.P.ism based on the cultural and societal needs of those who are dealing with dying, death and bereavement through the various forms it takes. Death is indeed part of life and acknowledgement of that fact in open and non judgemental forums is necessary for those consciously wishing to experience a ‘good’ death. The report highlights areas globally that can be seen to negatively impact on the experiences of those who transition. Regardless of socio-economic structures infused with well crafted systemic exclusion practices or insufficient staff training and promotion within facilities providing end of life care; there are always going to be cultural beliefs that also impact or maybe even impinge on the concept of a positive transition as not only possible but a fundamental right for one and all.
References:
Bhatnagar, M., & Lagnese, K. R. (2019). Hospice Care. In StatPearls [Internet]. StatPearls Publishing.
Bonavita, A., Yakushko, O., Morgan Consoli, M. L., Jacobsen, S., & Mancuso, R. L. L. (2018). Receiving Spiritual Care: Experiences of Dying and Grieving Individuals. OMEGA-Journal of Death and Dying, 76(4), 373-394.
Choudhury, K. (2017). A Buddhist perspective on death: An ethnographic study and implications for nonprofit marketing in grief support and terminal illness. International Journal of Nonprofit and Voluntary Sector Marketing, 22(1), e1569.
Clark, D. (1999). Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Social science & medicine, 49(6), 727-736.
Elliott, Hermione. “Moving beyond the medical model.” Journal of Holistic Healthcare 8.1 (2011).
Grisaru, N., Witztum, E., & Malkinson, R. (2008). Bereavement customs, grief and rituals among Ethiopian immigrants to Israel. Illness, Crisis & Loss, 16(2), 111-123.
Irish, D. P., Lundquist, K. F., & Nelsen, V. J. (1993). Ethnic variations in dying, death, and grief: Diversity in universality. London;Washington, DC;: Taylor & Francis.
Karadag, E., Kilic, S. P., Ugur, O., & Akyol, M. A. (2019). Attitudes of Nurses in Turkey Toward Care of Dying Individual and the Associated Religious and Cultural Factors. Journal of religion and health, 58(1), 303-316.
Stroebe, M., Schut, H., & Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. OMEGA-Journal of death and dying, 74(4), 455-473.