Hoping for the best and planning for the rest
It was not Zoe Mitchell’s plan to become a palliative care social worker, but sometimes the universe works in mysterious ways.
Earlier in her career as a social worker, Zoe was looking for a role that would be a bit more “meaningful” for her, so a colleague suggested that she apply for a palliative care social worker job that was available. She did not know what the role was, or if she ever wanted to work with dying people, so she hesitated.
That week, Zoe was working with a patient who had a heart attack and was recovering in the hospital. “He was an older man, and we had a bit of a love/hate relationship,” remembers Zoe. “He enjoyed my company when I went to see him, but mainly because he could stir me up and tell me to go away.”
“On the day he was meant to be discharged home, I went in to see him and made a joke that he must be excited to be getting out of the hospital and away from me. He looked at me and said ‘oh, I don’t think I’m going anywhere today’. I replied, ‘what are you talking about? You’re going home; it’s all planned’. In what seemed like a very unusual move for him, he asked me to hold his hand and to stay with him.”
Zoe and the man then had a completely different conversation from the ones they had before, talking about the weather outside and what was happening around the world. As she sat with him, he had another big heart attack. Zoe stayed with him until he died, making sure he was comfortable as that was his wish. The man’s son arrived at the hospital and said he was grateful that someone was with his Dad because his father was ‘so afraid of dying alone.’
“It was just such a profound moment for me; I had never seen anyone die. If this was not the universe giving me a massive sign that this is what I should be doing, then I don’t know what was! So, I applied for the palliative care job, and I got it. I never looked back,” says Zoe.
What’s the role of a palliative care senior social worker? “It’s a question I get asked all the time, and it’s a tough one to answer,” says Zoe. “The social worker is a core member of the palliative care team, and we play a vital role in supporting the patients, as well as their families during what can be a challenging time. We support people to help them adjust to their situation and provide advocacy to ensure that they, as a person, are not forgotten amidst all the medical and treatment plans. We have conversations around goals of care and end-of-life planning, which can include hospital discharge planning, depending on where the patient wants to die. We tailor the approach to the patient. At the end of the day, we want to help people live as well as they can until they die”.
While they are essential, these conversations around goals of care and end-of-life planning can be challenging to initiate. Not everyone is open to discussing their end-of-life plan, and Zoe says she’s grateful when families and patients are open to talk. Some palliative care patients worry that they might even be hastening their death if they write a will or prepare advanced care directives, which can be a barrier to overcome.
“Some people don’t want to acknowledge that they’re dying, and I think that’s ok and you have to respect that. Some patients know deep down what is happening and what they might want, but won’t say it out loud,” says Zoe. “The way that I go about it is to talk to them about how they can live as well as possible until they die, whenever it happens. It’s important that we know what matters to us, and that this allows us to take back a bit of control.” Discussions can be about what’s your ‘threshold of care’, meaning what they are willing to sacrifice to achieve the goal of living longer, what treatments is the patient ready to receive and which ones they would refuse, and what they want to happen after they die.
“In palliative care, there is a saying that I like: hoping for the best and planning for the rest. This saying means that death is not necessarily going to happen soon, but if it does, then we know what we need to do to care for that person, the best way that we can.”
Zoe acknowledges that palliative care workers need to discuss and respect cultural beliefs with patients. Not every culture deals with death in the same way, and it is crucial to recognise this. It can seem challenging to determine what is acceptable for each patient, but Zoe believes that there is no better way to do so than by building trust, then clearly asking what the patient is willing to discuss.
“I had a patient from an Asian background, and I told her that I did not want to disrespect her beliefs by discussing topics she was not comfortable with. She replied straight away ‘oh, don’t be ridiculous! I don’t mind at all, and I would rather get these conversations out of the way sooner rather than later.’ You have to ask your patient, and you will know,” says Zoe.
When asked about what she loves the most about her role, Zoe immediately answers that she loves to hear people’s stories. “When patients come in, they are usually very sick, and they don’t necessarily look like they normally would. Hearing who someone is, what they have done in their lives, their hopes and regrets, this is what I love. You can then use this information to discuss their goals of care and tailor them to who they are.”
“It can be nice and meaningful to help people prepare or to do some memory-making and legacy building with families and children. We can help those who are about to die to be remembered by their families, especially if they have young children.”
Zoe said she was happy that the theme of National Palliative Care Week 2020 was “It’s more than you think” because she believes there are still a lot of misconceptions around what palliative care is. “I think it’s important that people realise that we are there for them and that we’re not only there to start a morphine pump. We’re also not just for older people; you don’t have to be 80 years old to receive palliative care.”
Palliative Care can seem like a hard sphere to work in, but Zoe sees a positive aspect in helping those who are dying. “If you are working in another health sector, you aim to help patients get better. It can be easy to see it as a failure if you don’t and to let it affect you. When you work in palliative care, you know what the outcome for your patient is most of the time, so it makes it easier for me to manage this, and be able to focus on patients comfort and providing support where it’s needed.”
Zoe recognises the importance of self-care for palliative care workers. Her best tip is to know it is ok to feel emotions, but we need to acknowledge what we feel and talk about it, whether we are sad or upset. I also use grounding activity like brief meditation or mindfulness to think about something else. “These things can re-centre us, and help us to understand that yes, we see the worst of the worst, but there is a lot of people that get sick and get better. We just don’t see that.”
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