The challenges of dying: lessons for palliative care.

Abstract

British Journal of Community Nursing February 2015 Vol 20, No 2 99 © 2 01 5 M A H ea lt hc ar e Lt d Caring for dying patients presents a range of dangers: not knowing what to say and saying the wrong thing; failing to control patient distress and even feeling inadequate in the support offered to dying patients. The irony, though, is that dying is the only certainty, yet it presents so many difficulties for both patients and health professionals to negotiate. One difficulty is that dying has become part of social death. The idea of social death suggests that how patients die is not the remit of the patient alone, but the wishes of the sum total of his/her social relations. Some patients are compelled to leave instructions behind (e.g. through wills) so that they remain a part of the living. It is acceptable that such wishes are carried out and may even be enforced through courts of law. The paradox is that although the dead may no longer be with us, they in fact are still present among us. Hadrianna, 48, had been living with a diagnosis of cancer for 18 months. One morning, she woke up at home feeling tired, had a very limited breakfast with her family and a pastor from her church, then died later that morning at 11:00am. Her death was certified by a doctor soon after and, all of a sudden, she was confined to the past tense. For the doctor, this could have been just another death, seen and certified and then moving on to the next appointment. For the family, it was a unique and difficult experience to come to terms with. Death changed how Hadrianna is viewed and talked about. Everything about her was to be considered in the past tense, even when her family could still see her body. She is gone, she has passed away, she is no longer with us—it is a permanent loss. Nobody is quite sure where she has gone to, and in our attempts to support the family, we often find it difficult to find the right words, if there are any, to say (Buckman, 1990). We often hear professionals say ‘she is at peace now’; ‘she would not want you to be sad’; ‘she would have wanted you to enjoy your life and find someone else’. How do we know this for certain? Is this an educated guess or a helpless reflection of how empty we feel when faced with the darkness that accompanies death? Do we say these things because we think the bereaved expect it or want us to? Instead of always trying to find something to say, our mere presence can be a powerful way of supporting patients and their families. Presence shows compassion, empathy and, where appropriate, putting your hand on the patient will have deeper meaning for them than anything spoken. Good use of presence can feel like giving an ‘emotional hug’, which reinforces connectedness with the person and their situation of losing someone so dear. When Hadrianna died, there was a sudden emergence of grief, would become a constant companion for the family, and which they had no choice over. Grief is our emotional reaction to a loss of someone we hold dear to our hearts. As health professionals in the community, where families go back to live their lives without Hadrianna, how can we support them to either get rid of the unwanted companion or live with the enemy side by side? The idea of living with the enemy comes from the literature surrounding mindfulness (see Owen (2014) for simple but effective techniques to use). The idea of encouraging families to join support groups is an inherently double-edged sword. In one sense, they can meet other families going through similar losses and share experiences; however, on the other hand, they may have to replay their loss over and over again, inflicting more distress and being reminded of their loneliness. When one partner is dying, the social institution of marriage also presents a paradox. Hadrianna got married on the morning she died. Hadrianna had publicly declared her love and commitment to her partner Hubert, and vice versa. This occasion was beautiful, yet also very sad—sad in that there was no time to celebrate being husband and wife, and, for Hubert, realising that Hadrianna is no longer with him. Hubert might feel as though he has married into loneliness. On reflection, has the impending death made the marriage possible or has it forced it upon them to fulfil a goal or yield to social pressure?