People think palliative care is one big miserable place, full of suffering and anguish and fear. But that’s not what it is at all. It’s everything mixed together. People are bored, people are happy, people laugh, people are anxious. Yes, people can be sad and experience negative emotions, but there’s a whole structure of nurses, volunteers, physicians, social workers, art therapists, music therapists, and pet therapists who are there to support whatever comes up. It’s the realest place I know.
Why I Chose to Volunteer in Palliative Care
I came to volunteer in palliative care through loss. Years ago, I’d volunteered at an animal shelter. Helping animals has always been one of my great loves. But even then, I’d heard about volunteering in palliative care and felt instinctively drawn to it. Life moved on, and I started taking classes in the sciences, preparing to enter the medical field. When the possibility of volunteering came up again, palliative care was where I knew I needed to be.
I’d lost family members who I wasn’t able to be with before they died. I couldn’t nurse them, take care of them, accompany them, or support them because they were very far away. It was a big loss for me. I thought that volunteering in palliative care would help fulfill that. I could be present for other people’s family members, or for people who didn’t have anybody to be there for them at the end of their lives.
The reality of palliative care is so different from what people imagine. The full spectrum of human emotion is being experienced here. There’s a difference between pain and suffering that becomes clear in this environment. Pain is the phenomenon itself: the physical sensation, the emotion, the tiredness, the discomfort. Suffering is the story we tell ourselves about that pain, the way we interpret it. Someone might feel tired and sick and uncomfortable. That’s pain. But when they start thinking that they haven’t accomplished anything in life and there’s no one who will be there for them when they die, that’s suffering. In palliative care, there are people working to support and assuage that suffering.
Handling the First Days
Sometimes I meet patients on their first days, and what I often describe as “shell shock” sets in. For some patients, everything happens quickly. From diagnosis to palliative care, the distance can be very short and they might not have processed it all. I try to sit with those who are going through that experience. I ask them how they feel, listen carefully, and stay very still and present. I wait with them until their feelings subside a little bit. Sometimes it doesn’t, and there isn’t anything I can do other than be there. So I am there with them.
Patients in palliative care are often sleeping, and it’s the family members who need support. I try to give caregivers, especially those who are alone in supporting their partner, time to themselves. I’ll offer to stay with their loved one so they can go for a walk or get coffee without worrying.
I’ll also invite a family member to the family room, make them a cup of tea, and just chat to give them a reprieve so they can be themselves for a moment and not be the caretaker. If I see family members standing in the hallway having a private moment of grief or exhaustion, I’ll touch their shoulder, offer a tissue, or just sit with them.
Why I Stay
What keeps me in palliative care is how real it is. It’s different from the corporate environment or people “road-raging” in traffic or families never talking about that one horrible thing that happened. Things are real here. People know there’s going to be pain and they’re trying to help as best they can.
The principles of palliative care should be the principles of all medicine: people need a team around them, people need community, pain should be believed and treated, and quality of life can vastly improve medical outcomes. I hope that medicine becomes more palliative in nature, because the people in palliative care are doing some serious living.
On balance, palliative care is actually a pretty happy place. Not kindergarten happy, but it’s not as sad as one might think. It’s about making life better. The sooner people realize that, the better for everyone.
Daria Semionova volunteers in the Palliative Care Unit at the Jewish General Hospital for Hope & Cope.
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