‘I don’t know how you do that’ is the common response when people ask me what work I do. I’m a social worker and I manage the bereavement and social work service, including the young people’s service, at Hospicjum św Gemmy.
I talk about death and dying most days. I witness great sadness, confusion, anger, guilt, shame and a myriad of other emotions. Some patients and families can talk about the future, make plans, and try to ensure that they have as much control as is possible when living with a terminal diagnosis. Others find it almost impossible, family members struggling to even mention the ‘D’ word, let alone talk about how it makes them feel or acknowledge the harsh reality of their time together being reduced.
Whether it feels ‘right’ to open up and discuss how death makes us feel is very personal. Whether or not to talk about it must always be a choice. I know this, and I know that the planning can be challenging and will almost inevitably involve distress and tears. But I also know that once it is done, once people have started to talk about how they feel, they can experience a renewed commitment to life, choose to focus on “now” and choose not to have regrets. It is a privilege to be involved with families when they are experiencing possibly the worst of times. It is a privilege to witness their bravery: it takes real courage to expose your vulnerabilities and to talk about the very difficult choices you have to make and the intense emotions that you are feeling. And it is a privilege to be alongside these families – to offer the time and the space that will help them find ways of communicating together; to acknowledge their sadness, frustration and anger; and help them to develop ways of managing.
In this last week I have worked with a number of patients and their families who all dealing with their situations in their own way. I spoke to an older man looking to identify a nursing home. He no longer feels confident about being at home and wants to be settled somewhere before, in his words, he ‘falls off the tree’. I talked to a mother who was unsure about how her son would cope visiting his dying gran in the hospice, and a few days later I sat with them whilst her son saw his gran for what he knew would be the last time. Another patient spoke to me, with some degree of humour, about making financial plans to support his wife after his death. He has no regrets, and says that although he has lived longer than expected, he is not yet ready to give up this particular ‘fight’. I spent time with our student social worker, assessing a patient who is happy to remain at the hospice until she dies. She feels that she gets good care there and she knows that she would not be able to cope at home. I met a son who was able to get to the hospice just before his mum died. I spent time with him and his family, listening to their memories and acknowledging their pain, hopefully helping them in the final hours of mum’s life. Finally, I spent time with a teenager as she created a gift for her special person and sadly accepted the small but significant changes that indicate further deterioration.
My hope is always that patients and families feel able to talk to each other about the future and to make plans. Those who find a way to talk about death, to communicate openly with each other, find themselves able to make the most of the time they have together, knowing that the future, however, terrifying, has been planned for as much as is possible. And, for them, that can be a relief.
I know that we make a difference, however small, when we spend time with patients and families. We hear what they are saying; we prompt for feelings that are hard to explain and explore; and we offer no judgement, but unconditional respect. For me, every day at work is different; some are more challenging than others. But the one constant is this: every morning I look forward to going into the hospice, and every evening I feel positive about what I have achieved.
Aly Guy, St Gemma’s Hospice Social Work Manager