The worth of palliative nurses and caregivers is invaluable, as they bear the burden of watching our loved ones in pain; the comfort they offer is priceless. Ms Sylvia Lee Ling Ling is one such person. A dedicated and nationally recognised Advanced Practice Nurse in Palliative Care, with over twenty years of experience, Sylvia has laughed and shed tears with those in long-term care, comforted families, and held the hands of patients as they passed away. In this interview, Sylvia shares her personal experiences in palliative care, and what she has learned over the years.
Interview with Sylvia Lee
From your experience, how has palliative care changed since you began in 1999?
When I first started out as a palliative care nurse at Dover Park Hospice in 1999, I had just completed my training in Gerontology. My interest in palliative care grew from a desire to help terminally ill patients live out their final days with dignity. Back then, palliative care at an inpatient hospice catered mainly to cancer patients. But over the years, the kind of patients we care for has changed from just those suffering from cancer to those with other broad spectrum conditions as well. This presents different challenges as their trajectories are different from the trajectories of cancer patients. We address patients’ palliative care needs much earlier in their illness trajectories, rather than just at the end stage.
Over the years, we have moved from practice-based to more evidence-based care. Some people worry that we are medicalising the palliative care process over caring for the patient as a person. In fact, the care is becoming more structured. People are gradually seeing the importance of having national guidelines and standards to meet the fundamental needs of these patients. The human element of care is not being taken away. In fact, the fundamental human-centredness of palliative care is still the core of what we do.
You are working with advanced dementia patients as part of ‘Programme Dignity’. What does it mean as a caregiver to treat end-of-life patients with dignity, and why is it important?
Part of human nature is to find dignity within yourself, and this depends on each individual. Palliative care is about whole person care. Sometimes we’re so engaged with the task of caregiving for a patient that we forget there’s a human behind the illness. The starting point of care is the person themselves and it is important that we get to know the person behind the disease. Most of the patients at advanced stages can no longer express their desires or decisions, and caregivers/surrogates can be so overwhelmed that they can’t help us understand what the patient needs or wants either. Hence, it is important that we instil that element of human care, and try to understand the patient from a whole person perspective – including how they were before they became sick – so we can guide the family in how to move forward, even as their loved one moves towards the end point.
What keeps you going during the difficult moments when dealing with terminally ill patients?
In the early years, I struggled with my own sense of helplessness when what a patient needed was not what I could do for them in the ‘practical’ sense. Having to bear witness to their pain and knowing I could only do so much was the hardest part for me in the initial years of my career. Over the years, I learnt from each encounter and this has made me brave enough to confront my own sense of helplessness and vulnerabilities, so that I have inner energy to bear witness to pain and suffering and continue to find meaning. As I have dealt with the loss of my own loved ones, this too has helped me better imagine how it is for those facing death and what it is like for their family and friends. The most precious and therapeutic moment is in “not running away”. Being present is probably the hardest part, but it also keeps you going because you can see the impact on the patients and their loved ones. In the midst of feeling helpless, this has helped me grow as a person and as a nurse.
In your experience, how could a creative outlet such as writing poetry be helpful to those impacted by palliative care, either as a patient, family or friend, caregiver or medical professional?
Well, I’m not poetic, but I like to read other people’s poetry! Creative outlets are a platform to express yourself. I like photography because for me, sometimes images speak louder than words. We were asked to write poetry once by one of our therapists, and surprisingly, there were a lot of poets amongst us! When we write, it allows us to really go into an area we’re not conscious of. When you allow that writing to happen and look back, you see that something unique and powerful can come out of it. Even though you may think, “I cannot write,” anything could come out of it if you try.
[Writing a poem for A Thousand Cranes] could be a beautiful project where people can discover their hidden talents. Your poems could have a powerful impact on the readers – you never know whom they might be. I have experienced that [powerful experience as a reader] myself.