I WAS once asked to organise a visit to our palliative care inpatient unit by a group of primary school children.
I felt a little nervous about how this would go, as we have a remarkably quiet ward.
That is the thing that strikes most patients and carers when they arrive in our ward – the peace and space and quietness of it all.
It is bright, and airy and has this amazing art collection hanging on the walls.
Patients and carers can choose their own art piece to hang in their room.
It often complements the other art piece that is a feature of most rooms – that is the pictures, drawings, cards, letters and other memorabilia that decorates much of the space surrounding a person in their room.
It’s always a privilege to walk into someone’s room and get a glimpse at their life – not only now, but snapshots of themselves at different ages, and of where they have fitted into other people’s lives.
Then I thought of the great opportunity to show this group of children that people who are dying are not “others” – they are us.
They are sick, but they still have much to give.
I learn every day from patients I see.
The children could see that a palliative care ward is not scary, it is not dark, and it is not full of people screaming in agony.
In fact they could see it is the opposite – it has amazing views, it is bright, and that even in the darkest moments people can be so full of life, so resilient, and even find space for humour.
Families often reminisce about happy times, as often that can help us remember fondly and cushion the heavy blow that death brings.
I talked to our counsellor who was going to spend some time with the children, and we thought we could make this a good experience for them.
Unfortunately it never happened – not because the children didn’t want to come nor because they were afraid, but because their parents were worried about how this experience would impact on the children.
I felt sad at their loss – what does that tell us about how we see people who have a life-limiting illness, and about how we lose focus and who that person is, somehow masked ignorantly to us inside a body that is not faring well?
It reminds me of the time I was talking to a patient who had motor neurone disease – this is a disease that affects your nerves and muscles, and patients can end up unable to move their arms of legs, or have trouble swallowing.
It doesn’t affect your mind as much, and people can be really challenged by struggles of communicating as their ability to talk is really affected.
This person said to me that the hardest thing he had to deal with was that as a previously successful businessman, highly sought after for advice and mentorship, he felt almost invisible now to his work colleagues.
He felt they could not see beyond his physical decline, and somehow thought that meant he was no longer capable of the mental work he was doing before.
I work in a palliative care ward that has 40 beds, and is staffed by a remarkable group of people.
I am lucky to work with people who really aim to provide patient-centred care.
Every day I am amazed at how these staff see beyond the physical ailments and try and see through to who this person is that they are serving.
I learnt early on in my career as a palliative care specialist that the best care for a patient and family can be given from anyone in the team who connects to them.
Sometimes it’s the doctors, often it’s the nurses, and frequently it’s the ward clerk and the cleaners who just do that little extra to show that they are cared for as who they are.
Every day I am amazed at the courage that is displayed by patients as they deal with dying, and wondering to themselves – will they be able to deal with pain, fatigue and loss of independence?
Will their family be okay when they are gone?
Every day I see this resilience of human spirit try really hard to eek out just a little bit more of a time with family.
No longer is any time taken for granted, but the true preciousness of life is found.
I have seen so much courage in how people approach their dying – and sometimes in the face of what I thought was awful suffering – that I often wonder to myself – will I be able to approach my own death with the same courage?
Dying is truly painful – and not usually on a physical level – it is much more painful emotionally both for the person dying and everyone around.
That is where I see the most courageous acts by people at the end of life.
Faced with a terminal illness, in a situation that cannot be changed, it takes real courage to recognise this and still choose to change ourselves and continue to live in each moment.
Dr Phillip Good is a palliative medicine specialist.
