Speaking from a position of care

How did you get started in palliative care?

While I was doing my internal medicine training in Sydney, I had a serendipitous opportunity to do a term in palliative care. I had always been interested in both oncology and geriatrics, so it was the synergy between these that I found in palliative medicine. I also had a personal connection with the head of the Palliative Care Department, Professor Ghauri Aggarwal — she was my Bharata Natyam dance teacher when I was a little girl!

What do you think is the biggest misconception people have about palliative care?

I would say that the biggest misconception about palliative care is that it is about dying, when in fact it is about living well.

There is also the assumption that it is only for the last hours or days of life when it is so much more. Many also think it is only for people affected by cancer. I think health professionals often hold many of the same misperceptions as the community; after all, our experience of death and dying is very much shaped by our own personal experiences and attitudes.

Do you think palliative care should be part of primary healthcare? What would be the most significant benefit?

Most people under palliative care wish to die at home. In this context, it is a no-brainer that primary care is critical to the provision of high-quality palliative care. The benefits are significant: we can meet people’s preferences with proactive and preventative care, and avoid acute care which is distressing for people and is not an optimal use of resources.

As someone in the end-of-life care field, do you find talking about death and dying matters easier?

I would say I am comfortable with having these conversations, feel confident I have received training to do my best at having these conversations, and place an immense importance on the value of them. I am not sure I would use the word easier. Each individual conversation you have with people who are dying and their families is unique and takes you somewhere new. They all require individual attention and energy, and I always feel like I learn something new.

A colleague who was trained in primary care before training in palliative medicine told me about the time she took some medical students on a community visit who were perturbed about a very ill person who wasn’t being immediately transferred to the hospital. She replied that it was for that exact reason that they should remain at home if that was their wish.

It always reminds me to ensure our junior colleagues are allowed the opportunity to witness these conversations and see as many people have them so they can build their own unique authentic way to do them well, also.

As Board Chair of Palliative Care Australia, how do you encourage more die-logues?

At Palliative Care Australia, we regularly engage in community campaigns and initiatives to equip more Australians to have discussions about palliative care and end-of-life. Our most recent is the More Than You Think campaign. We used animation to allow people to feel comfortable exploring the topic, which was then broadcast on mainstream media across the country. 

As a leader in palliative care, how do you achieve your goals of promoting palliative care?

At the beginning of my career, it was very much about advocating for palliative care for individual patients and their families. Over time, I have realised the importance of the promotion of palliative care at governmental and policy levels, and that we need research that translates into practice to achieve equitable and better outcomes for all.

My approach has always been to try to work out the stumbling block for a person, another clinician, or a political stakeholder, not to engage with palliative care, so you can present the case through their lens. A strengths-based approach rather than direct provocation can get even the most resistant clinician onside! As a researcher, using data and evidence has also opened up conversations with my clinician colleagues.

What advice do you have for caregivers contemplating palliative care for their loved ones?

Validating how important the caregiver role is, and also that care for them is as important as care for the person with the palliative condition. 

I also try to remind people to alert care teams to emerging issues early – caregivers often don’t want to ‘disturb’ the nurses or think their issues are trivial, but if they understand that we can respond more easily, they then feel more confident in being partners in care with us. Facilitating conversation between the caregiver and their loved one is also so important; sometimes, caregivers need some guidance on how to approach these important conversations.

What is your vision for the integration of palliative care into community settings?

At Palliative Care Australia, we see a world where quality palliative care is available for all, when and where they need it. This requires a vision for accessible care, which can be rapidly mobilised and adjusted as needs change. It requires healthcare to work in partnership with social care and communities, and governments who value informal carers and care in the community.

Everyone has a place in helping us deliver this vision, whether through funding, working or advocating for community initiatives, asking about palliative care for yourself or your loved one, having a conversation with loved ones about your end-of-life wishes or undertaking more training to improve your own clinical skills.

Has your work in end-of-life care changed your perspective on life?
It reminds me that we don’t ever fully know what might be happening in someone’s life, and to try to approach all conflicts with kindness. As an introverted person, it has made me speak up and share the voice of the people I have been privileged to care for. I don’t think I would ever have voluntarily put my hand up for a media interview two decades ago!

This article was originally published on the Singapore Hospice Council website and in The Hospice Link September-November 2023 edition.