18 October 2022
Harbour Hospice counsellor Sasha McAllum Pilkington opens up about her role and the beauty she witnesses in families when a loved one is dying.
What drew you to become a counsellor for hospice?
I've been a counsellor for 35 years and I've worked in a number of different contexts and enjoyed them all. What drew me to hospice was that I'm really interested in companioning people who are suffering. I think that possibilities for very rich ways of living according to people's values can open up, and very rich connections that might not otherwise be possible can be made.
People might assume that such a role could be emotionally challenging.
In palliative care we often see the very best of people in the most demanding and difficult situations. We see love in action. For example, people who are caring for someone even though they're really exhausted; people who are more worried about their family than themselves even though they are dying; people who are looking after someone they don't even necessarily like.
There is tremendous generosity in what people are willing to do for each other. We often see people living according to what really matters. It's very uplifting and an honour to be part of.
And I work with teams of people who share some common purposes and values around supporting families, which is very heartwarming. We support each other when there are challenges. It's a wonderful place to work if you're interested in doing meaningful work that can be transformative in people's lives.
What are the themes that come up time and again when you’re counselling patients?
I think that there are a lot of pressures on people to be constantly positive - and to fight rather than, perhaps, do what they might be more interested in doing, which is living with some quality of life.
Those pressures can have the unintended effect of really shutting down space to talk about suffering and of mortality. So, these are things that people talk to me about because they haven't been able to share openly.
Sometimes people are understandably fearful about pain or the possibility of losing their dignity, or they’re fearful about a particular aspect of their disease.
Loss is a significant theme for the person who is unwell and for family. People who are unwell are often very concerned for their family members. They might be really worried about their partner who they're leaving behind or their children.
Sometimes people worry about becoming a burden on their family or carers.
How would you support someone who is worried about becoming a burden?
I think it’s important to learn about what kind of burden they are worried about becoming, because, understandably, many families are unaware of the wider support that is available.
Often the fears are things we can work through together. I'm thinking of someone in particular – let’s call him Rob - who was very concerned about becoming a burden. He was a wonderful human being who really got to know his carers, and who made each person coming into the room feel special and valuable. One of the things we did in our conversations was to really look at Rob’s effect on those in their life and invite him to see himself through the eyes of the people who cared for them. Rob came to realise how valued he was and that he would never be a burden.
How do you support people who fear dying?
I think it's really important to meet people where they are, to be curious about their world, to use their language and to open up a space in which they know they are respected so they can talk about their experience and what it is they're fearful of. Some fears will be able to be eased by the hospice team – palliative care offers so much more than people know about these days.
However, not all problems are fixable and we may approach these fears together, perhaps by offering support through connection and companionship, finding meaning, ensuring they have a voice and are influential in their life.
How do you support families?
We support families as a multi-disciplinary team and in many different ways, according to what each family needs. As a counsellor I meet with people who are often inside a crisis. They may be under enormous stress and not feeling anywhere near their best.
People are very receptive to counselling generally and willing to give it a go when they wouldn’t have at other times in their lives. I love how they discover it can be helpful and enjoyable.
Narrative therapy ideas inform my practice. I like how narrative therapy sees people as more than the illness they live with and as experts in their own lives. It offers a way of listening for what a person’s best intentions are while positioning people in relationships to the challenges they face in a way that is both respectful and helpful.
If you’re curious to learn more, there are many different detailed accounts of Sasha’s practice in palliative care that are freely available under her full name on ResearchGate.net.
