The GroundSwell Project

At the beginning of Palliative Care Awarness Week we had a spontaneous idea  - let’s invite people to write about what they have learnt about Palliative Care. This idea was inspired by Carly Findlay who is currently leading a wonderful awareness campaign about a topic close to her heart Ichthyosis - via Ichthyosis Awareness Month. We are delighted of course that Carly has also shared here with us about her experience of palliative care. Thanks Carly.

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My grandfather, Poppy, died in May 2012, aged 91. A couple of weeks before he died, he was moved from his nursing home to palliative care.

My parents, his next of kin, the ones who made The Important Decisions, were on their way to Flinders Island for a holiday. It was a trip they had booked for months. On the day they drove to Melbourne from country NSW to catch a small plane across Bass Strait, the nursing home told them there was a bed for Poppy at the hospital. It was his time.

The hospital staff encouraged my parents to continue on their holiday, assuring Poppy would be in the best of care. But because they were about to board a plane and there was limited phone reception on Flinders Island, it was me who had to make some Important Decisions about Poppy’s time in palliative care.

The nursing home staff called me to tell me where Poppy would be transfered, and gave me the ward details. I was 300 km away from Poppy, and my parents were further away, but I didn’t want Poppy to feel the distance meant we’d forgotten him.

On his first day there, I called him, and he made some noises over the phone. He knew my name, spoke it but said very little else.

On his third day, the palliative care staff asked me what religion Poppy was. They wanted to know whether Poppy would be comfortable being blessed by a chaplain. I didn’t know, and I didn’t know. Poppy was so organised with funeral plans and legal documents drawn up, and my parents made The Important Decisions, and suddenly I had to make one. For the first time in my life I felt like an adult. I don’t believe in religion. A chaplain would not be my last wish. But this wasn’t a decision to be made about my life, it was about giving a 91 year old – a husband, a war veteran, a father, a grandfather, a hard worker, a poet, a migrant – the send off he deserved. And I’d watched episodes of Compass on the ABC and seen the great work chaplains do in palliative care. They are essentially social workers. So I said yes. If it’d give him peace before death, let a chaplain talk to him. Send him any chaplain from a Christian denomination, I said. And so they did.

I called the palliative care unit each day. They gave me updates. Poppy was up and about. He was eating. He was coherent. Then he was deteriorating. He no longer required food four days before he died. He was lucid. He was comfortable. The palliative care staff told me the process the body goes through before death.

My parents came back from holidays. Poppy held on until he saw them again. And then he passed away at around 6.40 on a Sunday morning. The palliative care unit made Poppy’s last weeks as comfortable as possible.

Poppy’s time in palliative care made me feel like the most adult I have ever felt. After I made the decision about the chaplain, my parents made further decisions for Poppy. We don’t know if he knew his time was up. But we know he was supported through his last weeks on Earth – both from his family and the palliative care staff.

Leeroy is a Palliative Medicine Specialist in Melbourne, who has worked in Palliative Care in the UK, New Zealand and Australia over the last ten years.

5 Most important things I have learnt from Palliative Care:

1. Holistic care – Medicine has lost sight of the person and their life prior to the consultation, but Palliative Care adjusts our focus to see what matters most to a life compromised by disease. Hopefully Medicine is changing and the physical, psychological, social and spiritual domains of holistic care are being recognised as integral aspects to healthcare in general.
2. Communication – Consultations should be a conversation and never a script. Palliative Care requires excellent communication skills, but more than this is the desire to improve on every encounter. It can be complicated by non-verbal cues, hidden agendas and silences; defused by listening, humour and touch…but remains a process of continual learning.
3. Family involvement – Make the family feel part of the clinical team – they know their loved one better than you, so listen and learn about the connected lives before you. Allow them to tell you stories about the person – you’ll gain an invaluable sense of who they really are and provide an opportunity for them to reminisce and bring meaning to life.
4. Human connection – Although we often see people for a fleeting moment in their lives, we also have only one chance to make a difference to that life and their family’s lives. Medicine has much to offer, but “quality of life” is a variable commodity, changing with a joke, hearing a song, seeing a picture, or the mere act of human kindness. Being present often matters most and if the moment moves you, it was meant to – just like your favourite films move you to laughter, tears or fear. People know what lies ahead of them and they deserve your humanity and presence.
5. Human spirit – I am continually humbled by the spirit of those whom I have met. It has been a privilege to be part of such a personal time for them and their families. They have made me the doctor I am and made me reflect on the person I am. To make a difference to someone’s health is what Medicine is about; to make a difference to someone’s life is what living is about.

If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?

If Palliative Care was “Everyone’s Business” then all dying patients would be cared for in the venue of their choice, as documented in their advance care plan. Patients and their families would be better informed and prepared via the excellent communication skills of the healthcare professionals involved in their care. Communities would work together to support those dying at home, and/ or their carers. Aged-care facilities would be better staffed and funded to provide holistic care. Medical teams would incorporate holistic care as standard care and the transitions between primary and secondary care would be smooth. Palliative Care would be viewed as the fundamental platform upon which healthcare is built – from education through to clinical services. Palliative Care would be recognised for symptom control as well as end-of-life-care. Everyone would be better informed about death and dying, as well as the distinction that separates euthanasia from Palliative Care.

The above would connect us all to our neighbours and rebuild our communities. Our open discussions would allow more informed decisions to be made around healthcare. Dying would regain an important role in our communities to remind us of the fragility of life and the importance of living, as well as the human capacity for kindness, humility and respect.

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My first encounter with the idea of “palliative care” was in the early 90s, when, as a playwright, I was commissioned to write a play for an international conference on hospice and palliative care.

The first thing I learned was that the very idea of palliative care was, back then, a relatively new concept both within the medical profession and beyond. Happily, things have changed in the past two decades and there is now a much broader-based community awareness.

I am always interested in the origins of words, and the second thing I learned was that “palliative” comes from the Latin, palliare,  meaning “to cloak.” This idea, imbued with associations of lending comfort and warmth, has always intrigued me.

I learnt that palliative care is holistic in approach and deals with much more than medical matters.

I learnt that palliative care is about quality of life.

I have subsequently learned, from personal experience, that early engagement with palliative care can bring enormous benefits, not only to individuals approaching end-of-life, but also to their families and friends.

Palliative care is everyone’s business.

When palliative care is truly everyone’s business it will be part of community conversations and family lives and people will have already shared their hopes and wishes about what they might imagine for themselves as a good death. The idea of care itself will be opened up and understood to be so much broader than simply ministering to and charting changes in the body. Increased death literacy, myth-busting, shared community know-how about the dying process, and early engagement with the idea and the possibilities of palliative care will empower people approaching life’s end to take greater control in determining the course and the narrative of their final years and months, days and hours. Families, children, friends, and neighbours will have confidence and support to share in the intimacy, the privilege and the mystery of attending another human being to the end of life.

Molly is the deathtalker and a leader in the palliative care sector. Here are Molly’s 5 things I’ve learned …

1.    No one wants to talk about death until it’s too late……..so we need to find ways of normalising death and encouraging conversations that aren’t confronting or scary.

2.    Death is EVERYBODY’S business, it’s not the province of doctors or hospitals or palliative care……………we’re all going to die, so we all have a vested interest in informing ourselves so we can live our lives rather than spend our lives fearing our death.

3.    You don’t have to be old to die…………babies die, kids die, young people die, so we need to include kids and young people in our conversations.

4.    You can use as many screening and assessment tools as you like, but the only way to REALLy get to know a person is to keep asking one simple question…………..four simple words………………..”Who is this person?”

5.    After you’ve asked the “who is this person?” question………sit down and SHUT UP! You’ll be tempted to interrupt, to offer an opinion, to dispute an answer, but if you do anything other than listen and ACTIVELY listen, you’ll break the connection and have to start all over again.

If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?

Margaret in conversation

Death conversations would be embedded in primary, secondary school and tertiary curricula (including all undergrad degrees, not just the caring professions…………accountants and architects need to understand this too). All people would understand dying,  no matter their culture, language, age or gender. All people would understand death as part of life and by demystifying the process, all people would be well equipped to nurture and support grieving members of their community, be that their school, work, cultural or geographical communities. Ritual would be rediscovered as an important component of community support and acknowledgement of lives lived and people’s stories. All employer organisations would need to demonstrate “compassionate workplace” initiatives, including leave flexibility, superannuation access flexibility for terminally ill employees, support for the families of employees who die unexpectedly, support for other employees when a colleague dies and memorialisation of deceased employees.

The media would report on and talk about death in a positive way without reverting to “battle” language. People would have ultimate control over the circumstances of anticipated death, where they die, who is there, how they are dressed, how they manage pain and symptoms. Traumatic or unexpected death would “kick start” community support for the grieving family. Advance care planning and organ donation would be standard and people not wanting to engage in either would need to “opt out”. Aging would not be viewed as negative but older people would be embraced by their community for their wisdom and life experience. Finally, death would no longer be something to be feared, but acknowledged as the inevitable culmination of a human existence that is valued by both the dying person and the people they love and reflected in the communities of which the person was a member.

That’s my dream…………….don’t know if I’ll achieve it all in this lifetime, but hoping I’ve sown enough seeds in my kids, their friends and the communities in which I live and work, to be confident that this is how the future will look!