Working with End-of-life Service Users
End-of-life care work is the most challenging type of care to give, but it’s also rewarding, in that you are privileged to be part of the service user’s journey through the last stage of their lives. Providing personal care and pastoral support, care workers are a crucial part of the support networks and often play a vital role in coping with grief. However, working with end-of-life service users can be emotionally difficult, and every day presents new challenges that require empathy and understanding from both sides of the relationship.
End-of-life service users are often dealing with emotions that we can’t comprehend.
Some people may be at peace with their situation, whilst others will not, and you will find that they may flit between the two ends of the spectrum, at different stages of their journey. However, it is their right to be heard, respected, and supported throughout, and whilst this may not always be easy, it is a critical part of providing positive care at this time.
If you are new to end-of-life care, it can be hard to process your own thoughts and feelings during difficult times. However, it’s important not to let your emotions get in the way of being ‘present’ for them, when they need your support. Listen carefully and empathise with their situation while still maintaining professionalism, even if this means going outside of your comfort zone – which is likely inevitable. And when you feel yourself struggling, seek support from your team; there will be others who have been where you are, and who can give valuable and practical advice to help you.
Boundaries are especially important when working with people who are dying.
How so? Boundaries make us feel safe, and bring a sense of normalcy to what can be an extraordinary and frightening time, bringing familiarity into their world, from the ordinariness of everyday life. Boundaries also enable you to be a more effective caregiver, by letting your service users know that you are there for them and will help them to make decisions that are in their best interests. Where suggested boundaries are not well received, remember that someone at end-of-life likely has much on their mind, and may need a little extra time and patience to understand the reason for suggesting these boundaries.
There are different stages of grief, and service users may be at different stages at any given time.
As mentioned, end-of-life service users can deal with their situation in many different ways, and as a care worker, you should be aware of the stages of grief and how they affect people. Denial, anger, bargaining, depression and acceptance – it’s not uncommon for people to cycle through these stages at different times. For example, a person might be in denial when they first learn about their diagnosis but then become more accepting as time goes on (or vice versa). This can be confusing for family members and friends – and your insights may help support them, and, in turn, enable them to support their loved ones more effectively.
It can be harder when you’re working with younger end-of-life service users.
Some of those you provide support to may be in their 20s, and 30s, and dealing with a terminal illness and a young family—all at the same time. For young end-of-life service users who are facing the prospect of dying far sooner than expected, they may be dealing with many difficult considerations, from debts, parental care, and insurances, to funeral arrangements. As a care worker, it’s perfectly natural to experience intense emotions as well: sadness, anger, frustration or guilt at times when a client’s condition worsens or there are no good options left for them to choose from. Again, remember – support is there for you; use it.
Take care of yourself, first and foremost
If you’re working with end-of-life care service users, remember that it’s okay to be nervous about your first experience. Even if you’ve done this type of work before, there are always new challenges and unexpected situations. By practising acceptance, non-judgement and empathy, you can provide the support they need as you accompany them on this emotional journey, However – look after yourself! Self-care is critical to ensuring that you can be at your best for your service users, while protecting your own health, as you do so!
