Palliative Care Coordinator
Palliative care is not just about dying. I will have patients react to the question of palliative care with a firm, “I’m not dying.” Palliative care is about symptom management, comfort, and helping patients and their families to manage a life-threatening disease. We do get patients who are discharged. They may come back to us eventually, but in the meantime, we want to see these patients live their lives without medical intervention, and with the knowledge that they can come back in when they need us.
Everything about this type of care is about putting the patient first. It is truly about the patient’s journey. And even then, it’s not just the client’s journey. They have family members and caregivers who are going through this journey with them, whether they live in the home or they are across the country. They are going through a grieving process.
We’re along to support them in that journey. It should never be about what I need or what I want.
I think about putting a hospital bed in a patient’s home as an example. There may be 100 good reasons why someone should have a hospital bed, but just because they’re dying doesn’t mean they don’t have someone they love. Some don’t want a hospital bed because they want to share a bed with their partner. It doesn’t matter if we think they should have that bed, we need to find out and respect why they don’t want it.
We’re in a position where we have to have hard conversations with clients and their families. It can be a situation where the family wants the client to “fight”, but they’re tired of suffering. Or a family member that wants the client to go into hospice, but the patient wants to die at home.
We have to ask patients who they want us to call if they die in the middle of night. Sometimes those conversations can take place over many visits; sometimes they happen all at once.
It’s not an easy topic. I remember a conversation with one patient about his wishes for end of life treatment. In the background, I spotted his wife shaking her head. I was worried about the response I’d get, but the client opened up about what he wanted. Afterwards, the wife took me as and thanked me for bringing it up. She said, “We didn’t think he knew or wanted to talk about it.”
I love my job. I love sitting with my clients and their families, helping them through their journey. I love the relationships I’ve made with my colleagues, the other coordinators, the nurses and the physicians. I’m uplifted when a family thanks me. Even just knowing that I’ve supported a client at the end of their lives, that they’ve had a good death, that they were comfortable, and they were where they wanted to be is enough for me.