The Practicalities Of Living Before You Die: Why Palliative Care Matters
If you’ve read this blog a bit, you’ll know I often draw on existential therapy and how the idea of death – and really engaging with it – can help you live a more vivid life.
But this time I don’t just want to talk about ideas. I want to talk about the nitty gritty stuff. The real stuff. The physical realities of this dying business; and the way that many of us in the western world will probably die (and whether that even gets close to how we might like to die when we finally do).
Because it’s important stuff to talk about.
And, as Jean Kittson put it: “there are no Apps for this stuff.”
I’ve spent the last few days at a conference on palliative care* with some really inspirational people (doctors, nurses, occupational therapists, volunteers, pastoral care workers and therapists) who all work with life and death. Who aspire to help us all “live until we die.” Who are guided by principles like these:
“You matter because you are you.
You matter to the last moment of your life.
We’ll do all we can, not only to help you die peacefully,
but to LIVE until you die.”
– Dame Cicely Saunders, Hospice Movement Founder
So let’s talk…
If you take a moment – just now – to imagine where you’d prefer to be when your time actually comes to die, where is that place? Who might be with you? What can you see from where you are? What might you be doing?
If you’re anything like around 80% of Australians, the place you just imagined was home. Yet for most of us, reality could be very different – only around 16% of Australians get to have that wish fulfilled. And the figures in many other western countries are similar. As Professor Ken Hillman noted, the medicalisation of our dying has happened just as much as the medicalisation around birth.
So what can you do about it?
For your loved ones?
Especially if a serious illness is involved?
Talk early and often.
Talk with each other about what you want; what you’d prefer; and what you definitely don’t want to happen.
Talk with your doctor and medical team.
Let them know what treatments you’re interested in (and which ones you’re not). And put it in writing, so they actually have the power to act on your wishes. Because they only want to do the best they can by you – they want to get it right – but they can’t always guess what that might be for you and your family. So tell them.
And talk with palliative care.
The words “palliative care” have somehow gotten a pretty bad rap. But the grim reaper doesn’t work for them (and certainly made no appearance at this conference). They’re just people who want to set everything up for you so you can live. How you want to.
They can help with services and equipment in your home, if you or your loved one would rather be there than in hospital.
These are crucial conversations to have.
And if you want to let them ripple out even further than that, you can. For there are also many community organisations that are rising to the challenge of re-claiming life and death back from the bureaucracy and medicalisation. Who are reminding us all that dying is a natural process. Who are empowering us to envision a different future for how we might live and die.
For example, in Australia these include The Groundswell Project, who engage these big questions through the arts. Or LifeCircle (formerly Home Hospice and Life Goes On), whose volunteers have all, themselves, cared for their dying loved one, and who support other carers of people who are choosing to die at home. Or Compassionate Communities, who are exploring more social approaches to life, death and bereavement.
So talk often and talk early.
And if you don’t know how, exactly, to kick-off a conversation like that, or what might be important to cover, here are a few links to get you started:
- About the process of dying
- About what palliative care actually is
- About how to support someone who has a serious illness
- About the kinds of questions you might want to ask your health team
- About advance care directives to put your wishes in writing
- About grief
- Or about some other important considerations
So what’s all of this death and dying doing in a blog about therapy, you might think?
Well, in part because therapy’s about life; as death is about life.
But also because if you, or your loved one, don’t get the chance to “live until you die” – if what you’d prefer ends up being overridden by a medical system that might often be trying to do its best at the end of life, but that can’t guess your wishes – then it can be heartbreaking for everyone involved. And it can leave everybody with an extra burden of grief on top of what they’re already carrying.
Palliative care and talking about how you want to live can spare all this pain. They can bring healing into the process of dying. They can support the things that matter most to you in all the world.
And if that’s not therapeutic, and incredibly worthwhile, and worth talking about, then I’m not sure what is…
*The conference was “Diversity 2011” the 11th Australian Palliative Care Conference.
Many thanks to Cancer Council NSW for sponsoring my attendance.
Photo and text copyright: Gabrielle Gawne-Kelnar
Gabrielle Gawne-Kelnar (Grad Dip Counselling & Psychotherapy) is a writer, blogger and Sydney psychotherapist in private practice at One Life Counselling & Psychotherapy. Gabrielle also facilitates telephone support groups for people who are living with cancer, for their carers, and for people who have been bereaved through a cancer experience. She was the former editor of a journal on counselling and psychotherapy and she provides regular therapeutic updates on facebook and Twitter @OneLifeTherapy.
Gawne-Kelnar, G. (2011). The Practicalities Of Living Before You Die: Why Palliative Care Matters. Psych Central. Retrieved on February 20, 2018, from https://blogs.psychcentral.com/therapist-within/2011/09/living-before-you-die-palliative-care-death-life-therapy/