Help clients talk about their end-of-life care

Providers have a key role to play in supporting customers and their families to have a conversation about their end of life wishes, writes Nieves Murray.

Providers have a key role to play in supporting customers and their families to have a conversation about their end of life wishes, writes Nieves Murray.

Nieves Murray
Nieves Murray

Most of us don’t want to think about the end of our lives, let alone talk about it, but that’s exactly what we’re being asked to do this National Palliative Care Week.

In a recent article for The Conversation, James Kirby, a research fellow in Clinical Psychology at the University of Queensland wrote that loss of control was a key reason why most people were afraid of dying.

I believe this is because we understand that our health care, aged care and legal frameworks are designed to enable institutions to control how we die, rather than empower us to make our own choices.

And I believe that is very wrong.

We know that if we enter an end of life care environment, the choices we can make for ourselves become very limited. We’re afraid we will not have the power to live out our final days in the manner in which we choose.

Palliative care providers should always seek to support our customers to understand and articulate their end-of-life care plans, and do everything in our power to help them achieve the kind of death they choose.

Sometimes this requires creative thinking and unwavering determination. In thinking about this issue, one of our IRT In-Home Care customers comes to mind.

This customer — we’ll call him Ben — had very complex health care needs and was under a guardianship order. When he was well enough, Ben lived at home with his dog of 13 years Roger and received care in his home. However, Ben was often so unwell he needed to be cared for in hospital.

Ben’s greatest fear was to die in hospital without his beloved Roger by his side. This caused him a tremendous amount of distress and anxiety. During Ben’s last hospital stay when we knew he was in his final days, we negotiated with Ben’s guardian and the hospital to have him released into our care. This wasn’t easy, but it was what Ben wanted.

With the support of his family, we planned to take Ben home, provide him with the best possible care, and support him to care for Roger. We also helped Ben plan for Roger’s future.

Ben died peacefully with Roger by his side, as was his wish, and Roger is now settled in with his adopted family. For me, this is a poignant example of how care and legal service providers can work together to give our customers maximum choice and control over their end of life care and their death.

Having the conversation is the first step towards achieving this outcome.

According to Palliative Care Australia, 82 percent of Australians understand this end of life discussion is important, but only 28 percent have had it.

As providers, we have a key role to play in supporting our customers and their families to have this conversation and document their wishes in an advance care plan.

I hope this National Palliative Care Week has provided us all with an opportunity to do this and to renew our commitment to enable maximum choice and control in end of life care and in death.

There are lots of resources available online to support our customers including www.dyingtotalk.org.au, www.deathoverdinner.org and you can watch an expert interview on advanced care planning on IRT Foundation’s YouTube Channel, The Good Life.

Nieves Murray is Chief Executive of IRT Group, a community based provider of seniors’ lifestyle and care solutions.

National Palliative Care Week 2016 runs from 22-28 May.

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Tags: advance-care-directives, end-of-life-care, IRT Group, palliative care,

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