The diagnosis of a terminal illness propels the person, their family and carers into a health care system which may not always be responsive to their individual needs. The diagnosis changes everything, irrevocably and instantly, and even with contemporary sensitivities to the need for holistic care. [1] Both health professionals and those requiring care may be unaware of the resources and services available.
This happens in the context of daily life. There are still children and grandchildren to get to school or sport, birthdays to celebrate, jobs to keep, or exams to pass and job interviews to attend. The person and family are often dancing between two rooms, the room of the diagnosis and its implications dominates and another, the room of normal, even banal life events with which they still engage. It is impossible for the impact of the first not to bleed into the second, but this is not always a bad thing.
As the person moves from the curative phase of an illness to a palliative phase, frequently this news is received with distress. This can be due to the obvious implications of disease progression, but also the loss of relationships with care professionals. This distress can lead to a reluctance to engage with palliative care and difficulty in comprehending the information which has accompanied this referral. Palliative care professionals, in establishing rapport, need to be sensitive to this possible sense of abandonment; and the need for information about options. Psycho-education is an important and often undervalued role in social work, facilitating patient and family decision-making. [2]
As health professionals we may focus on addressing the concerns and goals of the person and family and be acutely aware of the constraints of the prognosis. It is, however, still important to respect dignity and autonomy of the person and the family, especially at a time when many aspects of life seem beyond their control, this may mean accepting that our schedules, as health professionals, do not always suit family needs.
Referral to palliative care can provide an opportunity for the person and family to work with a social worker. This can help to identify and address the issues which are or have the potential to cause the person the most grief and difficulty adapting to their changed circumstance. An invaluable guide to the inner concerns of the person and their loved ones are two simple questions: “Who is most affected by your diagnosis / who are you most concerned about?” and “What do we need to know about you in order to provide better care for you?” [3] Responses to these two questions can be enormously diverse, providing valuable insights into the person requiring care and acknowledges each person as a unique individual. I was fortunate to witness Professor Harvey Chochinov conducting a dignity therapy interview at the Inaugural Whole Person conference in Sydney. These questions remain with me in my work, as the most important way of humanising the relationship between the individual with a diagnosis and those attempting to provide timely and useful assistance. How can we help if we do not know the person? What is important to them as a human being, not as a “sufferer of terminal illness”, will shape the choices that they make at the end of life.
Dying brings many bodily changes with the decline in health but also can bring withdrawal from social networks, loss of normal roles, and a real sense of solitude with the confrontation of the end of one’s existence. Existential distress can bring a sense of meaninglessness, hopelessness and despair.
Dignity Therapy is a powerful tool in engaging with people at end of life who are experiencing existential distress or regret and who have a desire to reflect on their life and the choices they have made. During this process, reflection on life choices enables a sense of meaning to be discerned; and the production of a document to share with loved ones after the death, can be a potent way to re-examine life experiences and contemplate the characteristics developed and strengthened over a life lived in the face of adversity and experience. The legacy document created can also provide loved ones with the insights and an important reminder of the values of the deceased family member.
The dance at the end of life was nicely illustrated to me by a memorable client who could no longer physically manage simple physical tasks. He reflected during a Dignity Therapy session that he wished he could return to the world where he could bemoan the ordinary chores of life.
References
- Hedtke L. Creating Stories of Hope: A Narrative Approach to Illness, Death and Grief. Australian and New Zealand Journal of Family Therapy. 2014;35(1):4-19.
- Cagle JG, Kovacs PJ. Education: a complex and empowering social work intervention at the end of life. Health & social work. 2009;34(1):17-27.
- Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ (Clinical research ed). 2007;335(7612):184-7.
Jan Obery, Senior Social Worker at Central Adelaide Palliative Care Service