Conversations with a Palliative Care Social Worker
Maya Devincenzi Dil
Maya Devincenzi Dil
I sat down with Julie, a palliative care social worker from the UK, to learn about the ways she supports people with life-limiting illness and their families. Her twenty years of social work within communities, hospitals, and hospices have given her a deep understanding of everything palliative care; some of which she shared with me. We discussed what this care really is in practice, what she wished more families knew, tips and advice on caregiving, different types of support available and so much more.
While some of her advice is specific to the UK, her warmth and kindness will leave an impression on anyone, anywhere. I hope our conversation leaves you more informed, encouraged, and empowered.
Can you summarise palliative care in a sentence?
Palliative care is the holistic care given to individuals who are living with a serious illness. It ensures their physical, spiritual, social and practical needs are met and their families are supported. It’s about comfort care and maximising quality of life, and can improve the care received at home, at a hospital or in a hospice.
What is your role on the palliative care team?
My role traditionally has been to support people with serious illness, family members, significant others or whoever the family caregivers (carers, informal caregivers) may be, adjust to living with a serious illness. Part of my role is to try and alleviate some of the pressure and stress that comes with that – just like a nurse or doctor tries to alleviate physical pain.
How do your responsibilities differ from family caregivers?
Well, I have a clinical and professional responsibility to meet the needs of people who are ill and their caregivers. My job is to think about what their social, psychological and spiritual needs might be. I can also give extra support or advice to families from a distance, because I’m not emotionally involved.
How do you support families specifically?
I check in with the family caregivers to try and support them with their emotional and psychological well-being. Then I direct them to practical or social support.
I’ve got counselling skills alongside my social work ones, so families can talk to me about all sorts – their emotions, anxieties, fears of the future, worries around their loved one dying… whatever they need. My help also includes offering practical solutions around applying for state benefits, or suggesting charities that could offer equipment – like a wheelchair.
Your support sounds holistic.
It is! The beauty of being a social worker is that my assessment is so holistic. I’m acutely aware that a person’s physical pain will be impacted by their emotional and social pain. For example, if somebody can’t work due to their illness, they won’t have an income. Which means they can’t pay their rent, and that is just as big of a deal as the fact that they have a serious illness.
What is one misconception about palliative care that you want to get rid of?
Involving a palliative care team doesn’t bring death closer. There is a misconception that when we as a team are invited in to support a person who is ill and their family, death is really around the corner – but it doesn’t always mean that.
I wish caregivers were aware of how much palliative care teams can bring in terms of support- rather than the fear that we can be associated with.
What’s something that you think people should know after their loved one gets diagnosed?
Caregivers should have the confidence that they know the person receiving care better than anyone. If symptoms have changed, or you notice a change in the person you’re looking after, it’s okay to ask the GP to come for a visit. Just trust your instinct. You know that person better than any clinician.
Could you share some tips on how to be a good caregiver?
Take time out. Don’t feel that you have to do it all, 24/7. You have to look after your own well-being in order to be a good caregiver – and you can’t do that without rest and nourishment. I don’t just mean food, but also nourishing yourself emotionally and physically. Caregivers often get ill and run-down, and then it hits a crisis point. So to avoid that, factor in rest and a time-out. It’s okay to be selfish at times.
What’s the most common thing you see family caregivers struggle with?
I think the biggest thing people struggle with is watching the person they love becoming less well and more dependent. By default, their relationship changes. Your finances are likely to change. Your social life will change. Fun drops out of the equation, and you have all these worries: How do we get to the appointments? How do I remember the medicines? How do I make sure they get the support they need? My advice is that it’s okay to ask for help. It’s okay to recognize that serious illness will change relationships, and it’s nobody’s fault.
Where should caregivers look for support?
I think initially they’d go to their GP or social services. They might approach a local hospice, charity or other types of organisations specific to cancer or dementia or whatever the illness is. Informally, they might go to family or friends, their communities…or online support, as there are a lot of spaces and communities online where people make friends and support each other.
Do you have any advice for family members on how to have difficult conversations? For example, how should they talk about the end of life and dying?
Talking about death doesn’t make it happen. Talking about how it might be at the end of life won’t bring it about any quicker. But what it does do is give people a sense of control. It gives people a safe space to talk about their fears and their worries. It’s okay to talk about what the symptoms might be or what your funeral might look like. That can actually give you a sense of control and a sense of purpose, and help you manage the last weeks or months or years of life. It can be quite empowering.
Do you witness people completely avoiding these conversations?
I think there’s a lot of denial, sometimes from the person who is ill, and sometimes from the family. Especially parents. I think denial is an interesting response, because it keeps us safe, doesn’t it? If we deny that there’s something shitty going on then we can pretend it’s not happening. So sometimes denial keeps us safe – but it only works for so long. Then at some point, it crashes down – and hopefully there’s somebody around to help a family face the reality.
How about daily interactions, how should someone interact with their loved one?
Try to be as normal as possible. Even if somebody’s sick they’re still the same person. See the human and not the illness. I think for family caregivers, especially in terms of looking after your mom or your dad or whichever loved one, try not to define them by their illness. Be curious about the person inside and what their wishes are, what makes life meaningful…that kind of approach.
It’s special to be able to have those deeper conversations about them, acknowledging their life by talking about the past memories…
Exactly. Being able to ask questions that feel difficult can actually really pinpoint what’s important. Things like, if you knew your life was going to come to an end, what matters most to you? Who do you need to see, what do you need to say? What do you want to do? Asking these questions helps you find out what matters most. It might be getting out of hospital, getting home, sitting in my garden, feeding the birds and spending time with my family.
Most of us lead small lives, don’t we? I’d encourage family caregivers to talk, and ask their loved one the question “what matters most to you?”
Okay, and how do you typically involve families in decision-making, planning, and actual care?
This is where it is helpful to get a bit of guidance from a professional or from somebody in a palliative care team around something we call advanced care planning. You start thinking about questions like: If you were feeling less well, where would you like to be cared for? Who would you like to be around? What matters most to you? What are your thresholds of treatments? If you knew you were dying, where would you want to die? The key thing is timing, and making sure it’s done carefully and sensitively. Families need to be ready for that kind of conversation.
Last question. How essential is the support of family members and other loved ones in palliative care? And in which areas do they provide the most help or are the most essential?
Family is everything. For care recipients that have got family and friends, they help pretty much across the board. People want their families around them in their hardest times, so as a professional I can help support them with their involvement – whether it’s caregiving or emotional support for their loved one.