Why I think a palliative approach to care is important when working with youth.
By Carley McConnachie
I remember the first time I overheard a conversation about death in a youth support setting. What immediately struck me was how nonchalant and normalized youth spoke about death. Two young women were admiring a ring received from a friend who had recently passed away from the toxic drug supply. One said, “I held this friend when they died” to which the other responded, “I also held a friend when they died; isn’t it crazy?” This conversation made me realize that I needed to go further than my harm reduction practice and begin to incorporate a palliative approach to care in my work with street-involved youth.
One of my frontline roles is a youth support worker, and I feel that a palliative approach to care is missing in this work. When I talk about this approach, people often think I am talking about terminally ill people needing hospice, but I am not. A palliative approach to care aims to reduce suffering and improve quality of life for people with serious illness. To me, this approach is about full service, well-rounded care that is provided to both clients, and their personal and professional supports. This care is full of hope, advocacy, and passion.
I got into youth work to be the type of worker that I never had growing up. Having someone to listen to what we needed versus telling us what they thought was right, or showing up for us in a way that was supportive, reliable, and relatable could have benefitted me and the youth in our neighbourhood. Meeting youth where they are at, being non-judgemental, and listening to words that are not being said are the driving approaches to care that brought me into this work. So how can I bring my experiences into the work that I am doing now? Looking within myself and learning from the people in my life that I have supported, I realize that incorporating a palliative approach to care is how I do that.
A palliative approach to care is driven by the person, focusing on quality of life defined by the person receiving care. We need to ask these youth what they want, how they think they can get there, and walk alongside them on this journey of care.
We need to create a safe enough space – settings and relationships – for youth and their supports to receive respect, be heard, and not judged. In these spaces, we can ask youth what their version of quality of life means and figure out attainable ways to make that happen. We can begin to talk openly about death, dying, and grief in a way that is relatable. As someone who lost friends starting at a young age, and had nowhere to talk or learn about grief, I was hindered in my ability to process such things until I was older.
A palliative approach to care considers overall wellness beyond simply meeting survival needs (which is of course important!). This involves looking beyond the surface and digging deeper with an understanding of how the simplest action can go a long way. This difference may just be a small in-the-moment act like introducing someone to a new flavour of tea, making the youth their favourite meal, or sitting with them to apply for housing. An approach focused on overall wellness could mean showing up and asking youth what their big picture ideas are and being by their side encouraging them to make those tiny steps to get there. I do not regret the decisions I made as a youth, but I know that having a support worker that took the time, made those simple acts, and showed up for us in the neighbourhood would have created a piece of safety that was missing.
A palliative approach to care asks what’s standing in the way of realizing quality of life. We need to draw attention to the lack of care and discrimination that street-entrenched youth face trying to access care in the hospitals. We need to advocate for access to affordable housing or transitional housing, access to person-centred treatment and recovery houses, and continued support after youth age out at 19. We need to be part of dismantling the barriers, mainly imposed and enforced through colonized and patriarchal systems that have been in our way for far too long.
We also need to raise our voices to challenge policies and rules in our own organizations based on decisions that are made by people who do not work frontline or have these life experiences. Structure is important but think about who these rules are benefitting: the youth or the workers? Meaningful involvement of youth in their own programming and services is essential.
I have heard from management and other support workers how youth work is all “black and white” and rules need to be followed. In my experience, this is far from the truth. A palliative approach to care recognizes we are living in the “grey”, and we need to step out of the systemic norms and work to support people in a way that improves lives and makes a difference.
Things are changing in the world of youth work. Harm reduction, client-centred and strengths-based approaches are at the forefront for new practitioners. A palliative approach to care, with a focus on quality of life, wellness, reducing suffering and addressing barriers only adds to these approaches. As frontline workers and practitioners in various fields that get the privilege to work with street-entrenched youth, I feel it is time for us to come together and start creating an approach to care that centres youth’s self-determined, individual and community care needs.
A palliative approach to care has a place in many more spaces than where it’s typically considered to belong, including in work with youth. Not only do I think this approach to care has potential in youth settings, but I also think it’s necessary in order to show youth that they, too, are worthy of success in whatever way that looks to them.