When Time is the Problem: Working as a Counsellor in End of Life Care
Counsellor Alan Madin shares what he has learned from working with clients in their final days
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As a trainee counsellor I applied to St. Barnabas’ Hospice, for the required voluntary placement. St. Barnabas aim to support those affected by life-limiting and terminal conditions across Lincolnshire. During my placement interview I asked if I would need to counsel people within the hospice at end of life. I was told “No, we have a spiritual team who work in that specific role, our volunteer counsellors are not working with those clients.” I asked because I wasn’t sure how I could possibly have anything to offer, or be able to work with, someone facing imminent death. I didn’t feel I had the required skills or knowledge to support them.
When qualified I continued my involvement with St Barnabas and I was asked if I would be interested in seeing clients actually within the hospice. The arrangement was simple – generally single session, probably very short (mine have ranged from 20 mins to over an hour) with either clients about to be discharged to return home for their last few days, or clients within the hospice struggling with their situation. With some trepidation I accepted.
There are no ‘specialist skills’ needed outside just honest person-centred counselling. I rely on very little else other than the '6 Necessary and Sufficient Conditions' (Rogers, 1957) – except perhaps with an awareness of a little bit of inner child for the voice of the unfulfilled younger self or with a smattering of Transactional Analysis to aid communication with others.
Therapy modalities aside, the single most important thing is to sit in the dark place with them so they are not alone as they recognise and understand their own emotions. Sit in the place they are at and no-one else can go. Listen to them and help them give voice to the words no one else will let them say. Hear the words they are too frightened to say on their own or which others deny them.
Be there as they come to terms with the situation. Do not try and minimise or make promises: You are not God. It is hard, but just be.
Though it is hard, it is very rewarding; even more so if working within the setting of a hospice with the most time-limited clients. With these clients the time to be in ‘psychological contact’ due morphine syringe drivers and sheer emotional and physical effort may be short.
Sometimes the pain being felt might not be physical in cause. Helping with the psychological distress can also help reduce the physical pain (this is being researched at the moment).
Remembering configurations of self is important. The person you see in front of you has more to their life than just the obvious ‘patient aspect’. From a systemic perspective this means you might have to consider the part they play in the different parts of their own lives and social groups. Each of their own separate parts may bring unique thoughts or challenges for the client.
Help build ongoing connections with those left behind. (Some creative counselling ideas might help here. As time is short, try floating ideas in a slightly more directive style, perhaps suggest creating a memory box, or a collection of cards/letters to be opened on a child’s ‘significant days’ in the future...)
It might be really useful to recognise the difference in spirituality and religion. For some clients they are the same. For some clients their spirituality will be really important to recognise despite them having no ordained religion. Some may forsake their religion and their gods. Others may discover a lost connection and return to them. Do not judge.
It might sound strange to try resolve past issues, but addressing a past trauma can help remove fear and emotion from traumatic memories, helping make their remaining time more valuable. This might be a valid consideration for some clients – but time is a real consideration here.
Many clients present with depression, anxiety or a sense of confusion. These stem from the wider issues. You cannot cure the terminal illness but you can help remove/relieve the unresolved fear and emotional hurt causing the depression and anxiety.
The confusion is often a result of not being able to share and talk openly about their emotions, fears and the future. Even someone with only hours left to enjoy has a future. Theirs is just shorter than yours. Remember it is their frame of reference that is important, two or three days may not be much to you but it is the rest of their life for your client. That is a long time, whilst at the same time often not long enough.
Contradictory to this; for others, no matter how short it may seem the time left will be too long. Consider having fought a long battle and knowing you cannot win, you are really tired and are physically and emotionally hurting with no way out. When there is nothing else there is hope – and hope that the pain will end soon is a valid hope. Wouldn’t you want it to be just over? Do not deny this hope.
I had a single meeting with an effectively housebound client in a loveless relationship, with no hope of significant co-morbid medical conditions improving whilst expecting a steady decline in mobility and greater reliance on others. The more pressing illness could be managed but would be terminal in a short time if not treated. I heard their thoughts and reasoning, validating the client’s experiences and reality. At the end of the single session (planned to be one of several) the client genuinely and fully thanked me for being the first person who really understood them. The client then declined further support as they were comfortable in their choice to refuse all further treatment other than pain management.
I respected them for their decision even as part of me wondered if I could do the same. At the same time part of me struggled to actually like the outcome they had reached with my involvement.
Did I say it’s challenging at times? Having a good supervisor is essential.
It is often really hard. If it's not: you're not really there with them. But when you are it is incredibly rewarding and powerful. I feel really privileged to be able to work with this client group.