End-of-Life - Elaine L Finkelstein PhD

FACING THE END OF LIFE

Turning to face the end of one’s life, whether this is imminent or a focus of one’s contemplation, raises several challenges. These challenges are a complex mix of one’s thoughts and emotions, relationships with others, spiritual philosophy or religious beliefs, physiological well-being, as well as practical considerations. It is the beginning of a journey; a journey that is as much a part of life as one’s birth, and a journey that is as natural as the cycles of the seasons. Reflecting on the dying process, however, can highlight personal fears and anxieties, some of which may involve uncertainty around what might happen as one nears the end of life. As human beings, our sense of self, and our ability to reflect on our own mortality and circumstances in this way, can make this challenging.

The comfort level of someone dealing with a life-impacting and life-limiting condition is fundamentally influenced by access to medical care generally, as well as to palliative care and hospice care when appropriate. For those who choose to be at home, knowing that comfort care is available to them, including assistance in the alleviation of any physical pain or psychological distress, is important. The knowledge that, if needed, medical advances can ensure the management of pain and suffering when one is nearing the end of life is very reassuring, but there is more to this uniquely personal and complex journey.

For example, those nearing the end of life may express concerns such as a sense of not having said all that needs to be said to a loved one, the need to forgive oneself and others, an unfulfilled ambition or a personal regret. These concerns, together with any personal fears, regrets and uncertainties that the person may feel, exist within a context of physical change; physical change that demands the navigation of the unfamiliar whilst facing an ongoing sense of inevitability. They also exist within the context of personal beliefs surrounding one’s ability to cope. The process of dying, which we will all face one day, can best be nourished through self-preparation, self-exploration, through a personal understanding of death and an acceptance of one’s mortality.

Many may have heard of the late Dr Elisabeth Kubler-Ross, a world-renowned psychiatrist who, in 1999, was named by Time magazine as one of the “100 Most Important Thinkers” of the past century. Kubler-Ross theorised that those who are dying potentially experience five psychological stages of loss and grief. These stages are:

Denial
Anger
Bargaining
Depression
Acceptance

These psychological reactions can, and often do, form part of the dying process. So, too, might other emotions such as shock, disbelief, a sense of loss, or feelings of hopelessness and helplessness. A dying person can be acutely aware of current losses, such as the loss of health, mobility and independence but may well grieve future, anticipated losses, such as the loss of family, friends, a future and life itself. These are all natural responses. Through her work, Elaine has witnessed the uniqueness of each person in this process, and their emotional experiences differ not only with regard to what they experience but also in the intensity, duration, regularity and timing of these emotions. Some of these feelings may occur simultaneously. As with one’s personal journey through life, the end-of-life journey is unique.

One’s end-of-life journey is a deeply personal process that is influenced by emotional, physical, social and spiritual forces. It involves shifts, changes, key personal experiences and decisive moments. It also offers opportunities to enjoy a quality and fullness of living within the limitations faced. In the midst of this journey’s challenges lies the opportunity for personal growth, breakthroughs, positive and purposeful behaviour, and transformation. The end-of-life journey is a time during which precious opportunities may be seized and savoured, a positive sense of the ‘completion of life’ can be experienced, and a receptivity to profound moments is possible. The dying person may embark on a search for meaning, and for insights into life’s purpose, as they move towards a personal level of readiness for the end of life. Although it is a journey that may require one to face fear or uncertainty, through love, acceptance, growth and hope one can ease the experience of these emotions and transform one’s relationship with the dying process and with death itself. It is a time when one may choose to explore one’s perception of death and one’s understanding of it. Some focus on a particular spiritual philosophy or religion, others anchor their exploration in their inner guidance and experience, and some reach out for support as they turn to face the end of life.

Within the context of inevitability, the end-of-life journey can also be a process of choice. Dying is not death, it is the life before it, and how one chooses to live it is a personal decision. Dying involves choices. Choosing to live life fully, and with courage, in the context of one’s physiological condition and limitations; choosing to bring love, meaning, richness and value into this time of one’s life, moment by moment; choosing serenity through completion; and choosing to explore one’s understanding of, and relationship with, death are all significant choices that, for many, will be there to be made.

It is about living well now, in this moment, and ultimately, dying gently.

Elaine counselled my mom in the last year of her life. She helped to prepare her for letting go, and was the only comfort my mom found in dealing with her fear of the difficult process involved when dying of Motor Neurone Disease. In very dark times, Elaine was a shining light providing insight and perspective, drawing from her vast experience in assisting others to accept and cope with a terminal illness…Her kindness and professionalism throughout this very painful journey helped us as a family to remain close and surround my mom with love until the end. Elaine gave my mom the wings when she needed to fly (Kirsty).

FACING THE END OF LIFE