What Matters Most: a personal reflection on palliative care

In National Palliative Care Week Heather Whitely Robertson, Head of Learning and Participation at the Art Gallery NSW, spoke about her very personal journey in palliative care and how the arts can help to transform our perspective on human experiences like dying and loss. Here is an extract from her speech:

One thing that is inevitable in life is that we will face death.

Sometimes death comes suddenly, sometimes early and sometimes slowly.

Whatever the circumstances, the quality of end of life is paramount.

4 ½ years ago, I lost my husband to Motor Neurone Disease. He faced a 2-year battle with the illness – and we fought strong and hard to find positive resolve to overcome his decline.

I remember the day that Jaime was assigned a palliative care team and how frightened I was. We were ‘at that stage’. We were losing the battle.

However, it became clear to me that we would have greatly benefited from having the support of the palliative care team even earlier in his illness.

The palliative team brought an ability and professional skill to support Jaime and our family holistically – not simply as medical patients – but as human beings approaching an inevitable part of life’s journey.

The team at Sacred Heart Hospice were not only able to provide physical comfort from distressing symptoms, but they were able to gently guide us through medical decision making, provide practical and psychological support. We felt nurtured and cared for as we faced this most difficult of times.

I don’t recall many instances of ‘in the moment’ pleasure during those months – nor easy ways to take ourselves out of the everyday experience of fighting for life.

Jaime and I would have greatly benefited from the experience of skilled professionals helping us dialogue about what matters most.

By exploring context and ideas of others (of artists) – we would have been able to step outside of ourselves – and into a different present than the one we were experiencing.

By exploring art from history to the present day – we could have explored our own humanity by exploring the humanity and ideas of others throughout time. I have no doubt, this would have helped us discuss some of the most important (but frightening) questions that we struggled to face.

Despite the pain, trauma and sadness of death, my experience of being with Jaime at his end of life, was deeply spiritual and profound. I wish I had known how to better prepare for this most important and sacred life experience… I wish that as a society we were not afraid to talk about death and about the important and critical role of palliative care in providing quality end of life – which can be life enriching for all involved.

I hope that National Palliative Care Week encourages this dialogue – and enables us all to be empowered to talk about how quality of life can be achieved through palliative care – and I look forward to working with Palliative Care NSW & UTS in the design of our new program to support those involved in end of life care.

Heather was speaking at the launch of National Palliative Care Week 2018 at the Art Gallery NSW. The theme of this year’s National Palliative Care Week was ‘What Matters Most?’.

Pic: Heather Whitely-Robertson