A week in the month of May each year is dedicated to encourage, cajole, inspire and convince society to talk openly about death and dying matters.This week, appropriately termed ‘Dying Matters Awareness Week’ was born out of the Dying Matters Alliance's attempt to create a broad-based, inclusive national coalition with the sole aim of changing public perception, knowledge and attitudes towards dying, death and bereavement (www.dyingmatters.org). This year's week (13–19 May) has the theme ‘Are we ready?’ and will showcase various creative activities across the country that will encourage people to talk and think about dying.The goal is to make dying easier for all concerned. However, there are certain ironies and paradoxes to consider before this can be achieved.
Challenges of dying
Caring for dying patients presents a range of challenges, from symptom control and management and effective communication to managing the patient's psychological concerns, which may make community nurses feel inadequately prepared to support dying patients. The irony, though, is that dying is the only certainty, and yet it is a beautiful mess that presents so many challenges for both patients and health professionals. For example, dying has increasingly become part of social death, in that how patients die does not only consider the patients wishes but the sum of their social relations. Some patients leave instructions behind (e.g. through wills) in order to share or bequeath their estate after their death although, by the same token, they remain part of the living. It is acceptable that such wishes are carried out and may even be enforced through a court of law. The paradox is that, although the dead may no longer be physically with us, they are in fact still present among us.
Belsa, a 56-year-old single civil servant, was diagnosed with ovarian cancer very late, so she decided against treatment. She wanted to die with dignity and asked for her nausea and vomiting to be controlled. As her symptoms worsened, she wanted to remain at home, and, one day, she asked to have afternoon tea with her family and the pastor from her local church. She died at 10 that night, surrounded by her family.
As soon as her death was certified, Belsa was confined to the past tense, and referred to as ‘the deceased’, ‘the body’ or both. For the certifying doctor, Belsa would have been just another death that they certified, immediately moving on to the next appointment. However, for the family, it was a unique and difficulty experience to come to terms with, as she was only 56 years old and could have had treatment. They found it hard to reconcile with Belsa's decision. In addition to Belsa being discussed in the past tense, her death was suddenly referred to in a language of euphemisms: ‘she is gone’, ‘she has passed away’, ‘she is not suffering now’, ‘she is now in heaven’.
When Belsa died, there was a sudden emergence of what would become a constant companion for the family—grief— which they had no control over (Owen, 2014). Grief is a person's emotional reaction to the loss of someone they hold dear to their hearts (Nyatanga, 2017). The deeper their feelings for the dead person, the more intense the grief becomes and, equally, the more intense is the emotional pain that follows. As health professionals in the community, where families continue to live their lives after their loved ones die, community nurses are in a position to support the bereaved who oscillate between their grief and pursuing everyday life interests. This means finding a balanced way of living with death while living their own life as well. When community nurses support these relatives, they can help them to weigh the available support options and then decide on one that is least distressing for them. For example, encouraging families to join bereavement support groups is an inherent double-edged sword; they may meet other families going through similar losses and share experiences, while on the other hand, they may have to replay their loss over and over again with a potential to experience further hurt.
There is also another paradox when one partner is dying. Belsa got married a week before she died. This is one of the most wonderful things that can happen in life. Belsa had publicly declared her love and commitment to her long-term partner Donald, and vice versa.This occasion was beautiful and yet sad, in that there was no time to celebrate being husband and wife, and for Donald, to come to terms with the change from partner to wife and then soon to realise that his wife was dead. Several views are possible, including that the marriage was driven by the impending death or was an attempt to fulfil some social, cultural or religious obligation.
Conclusion
Death and dying are associated with numerous paradoxes, all of which have the potential to challenge us. The way patients approach death reflects their preferences and choices. Community health professionals can support patients to die and the bereaved to navigate their grief. Time frames cannot be assigned to this experience of grief, because the ‘emotional chaos’ often created by death can be difficult to resolve. It is important to allow the bereaved to find their own order, since it is their chaos.