Story by Jonas Ho, Phase III Medicine
A couple of months ago, I applied for a Palliative Medicine attachment because I felt that I never got the chance to see the work of a palliative care doctor or nurse despite volunteering with different groups of palliative patients. ‘It’s about palliative care’ became a common phrase I used when telling people about the projects I am in; yet my understanding of it was still so limited. The attachment really taught me many lessons that I will cherish as I continue to learn to be a useful doctor. I am grateful to Dr. Noreen Chan and the entire palliative care team at the National University Hospital for allowing my classmates and I to shadow them over the course of five days. I’m also grateful that the whole team had been so welcoming, answering our questions and taking the time to explain different things to us. I hope to be as patient and nurturing when it is my turn to help students.
THE APPROACH
“Everyone can practice palliative care, we are just the specialist team for it.”
I see now that practising palliative care is about viewing each patient in a holistic manner, appreciating their beliefs, values and understanding that each one of them has a story that we only know a little of. It is not just about managing the physical pain or providing symptomatic relief, as the medical aspect of ensuring the patient’s comfort is only a fraction of his care. The patient and his family’s concerns, worries and preferences must all be considered thoroughly and addressed well.
For palliative care patients, the goal is also quite different. It’s less about temporary pain and discomfort in exchange for a prolonged life. Rather, it is about preventing intrusive procedures, improving pain relief and making the most of the time the patient has left. No matter what I do in the future, I will remember these key insights.
ROLE OF THE PALLIATIVE CARE TEAM
(roughly in the sequence of the patient’s disease progression)
Introducing themselves to the patient, explaining to the patient that the Pal Care team’s role is to provide pain management and support him and his family in this time. Finding out how much the patient knows, providing information about the disease to the patient and pre-empting the patient to potential complications. Treating the patient’s symptoms to improve his quality of life.
This is when the Pal Care team establishes rapport with the patient. I learnt rapport must be built sufficiently such that the patient can hold deeper conversations with the team without keeping things to himself.
Touch base with the patients’ family and let them know that the team’s job is to provide support to the patient and his family.
We witnessed Sister B and Dr. L speaking to a patient’s family after the patient had just been referred to the Pal Care team. This meeting taught me the importance of acknowledging the family’s burden and letting them know that the team (which also includes medical social workers) is there to support them. This awareness gave a certain comfort to the family members. Being there for the family during the trying times when their loved one is suffering from a terminal illness is also an incredibly meaningful and important task.
If patient’s family and patient are ready, have a family conference and run through Advanced Care Planning.
I sat in on an ACP session with a patient, his family and Dr. Z. It was clear how important it is for the medical team and the patient’s family to have a very clear understanding of the patient’s wishes for himself. This helps everyone know how far the patient is willing to go with regard to
life-sustaining treatment, the patient’s preference for where he would like to die and to whom he will entrust the responsibility of decision-making on his behalf. Many patients will not be as open to holding this discussion; some may not be sure about their preferences. But I saw the importance of having this conversation, so that everyone would be informed about and respect the patient’s preferences.
Family conferences are also a very delicate matter, as good intentions for the patient may become decisions that the patient may not actually want. I learnt that it’s the Pal Care team’s job to facilitate this entire process of deciding what’s best for the patient, so that the patient can die on his own terms, instead of agreeing to what the family decides for him.
In a terminal discharge, ensuring all worries and questions are addressed fully.
I had the chance to see a couple of terminal discharges during my attachment. I saw how Dr. L, Sister P and Dr. Y spoke at length with a man who wanted his wife to be brought home from the hospital. It struck me how much patience and guidance was required as the team took the time to address all his questions, as he still did not feel well prepared to care for his wife at home. I can only imagine that in addition to the emotional burden of caregiving for his wife, he also had to deal with many logistical matters. Thus, having the team explain the different precautions he could take and how he could prepare for his wife was definitely comforting for him.
Preserving the patient’s dignity and relieving the patient of pain or discomfort.
I also followed the team when they had to conduct a terminal extubation for a patient in the ICU. Even though they warned the patient’s family
that it could be quite a traumatic experience witnessing one’s loved one being extubated, I saw how gentle and careful the team was during the entire process. As they removed the various tubes from the patient’s body, they were still talking to the patient and worked swiftly to reduce any discomfort. The patient grimaced a little during the extubation and I saw how Dr. Z stopped everything to ensure that another bolus of analgesics was given so that the patient suffered as little pain and discomfort as possible. I was glad to be able to witness this event, as it taught me what it means to help a patient pass on with dignity.
THE IMPORTANCE OF NON-VERBAL ACTIONS
An understanding expression; a gentle touch on the shoulder; giving time to the patient, allowing a family member to be emotional; offering tissue paper or a drink. I saw how these tiny gestures went a long way in showing the patients that the team cares for them. It helped them feel that they are understood to some extent and made me realise that such actions should never be underestimated.
I also witnessed how the Pal Care team cares for patients by going out of their way to get things that the patient likes. Such as when Nurse Y and Dr. S went to buy isotonic drinks and ice cream for their patient, and how Sister B planned a birthday party for one of her patients. I was touched to have seen these kind actions and it just speaks volumes about the kind of care that the team provided for the patients under their care. It was clear to me that caring for their patients is much more than just a job, instead, walking alongside each patient on his or her final journey is the genuine mission of the Pal Care team.