From ABC Health and Wellbeing, 9 July 2013:
Death is a lot like birth. Sometimes it’s a peaceful, even beautiful event that goes according to plan. Sometimes it’s a horrible bloody mess that is utterly beyond all control. Most of the time, it’s a bit of both.
We have this idea that death is something that just happens to us. It’s true, you will, at some point, die, and that is not subject to negotiation with any earthly power.
But that doesn’t mean that we are powerless in the face of death. Some of us can actually have a lot of say in the kind of death we have.
Where we die
Around half of all Australians will die in hospital, and a significant number of these deaths will happen in intensive care – the place that even intensive care doctors consider to be the worst place to die.
But thanks to the emergence of the relatively new field of palliative care and the slow but steady growth of the hospice and home hospice movements, many of us (subject to local availability) can avoid this fate.
Palliative care labours under the unfair perception that it is where people are abandoned to die when they can no longer be treated. Penny Douglas has worked in the field for more than twenty years.
“What happens in palliative care is you get somebody sick for long time, being treated by an oncologist, then one day they go to the oncologist and the oncologist says, ‘Sorry, I haven’t got any more to offer you, I’m just handing you over to palliative care,'” says Douglas, from Bear Cottage children’s hospice.
“So when people are referred to us, they are terrified because they think this is where you get bumped off or moved on, nobody helps you anymore.”
But palliative care does what few other branches of medicine do – it treats the patient as a person, managing not only their physical symptoms but also their psychological and spiritual suffering, and it encompasses not just the patient but their whole family.
As one palliative care specialist was quoted telling his patients, “We’re not going to cure you now, but we’re really going to care for you. This is where the good stuff happens. We’re going to be with you all the way.”
While palliative care is a relatively new specialty, it is slowly making headway into hospitals and into treatment so that instead of patients being handed over to palliative care when they are just days away from death.
Hospices can offer a far more gentle, holistic alternative to dying in hospital, and allow for some of the home comforts that we might yearn for while still providing all the palliative care expertise you need. Many hospices are also helped by volunteers who give over their time simply to keep residents company and talk to them.
Dying at home, in familiar, comfortable surroundings is also an option. While it requires a lot of forward planning, specialist help, and strong support networks, it can be done. Your health professional can probably provide you with information about palliative care outreach services in your area, such as a community palliative nursing service.
There are also courses available for home carers that can be tailored to caring for people with particular terminal illnesses such motor neurone disease. Organisations such as LifeCircle offer volunteer mentors, telephone support and advice for individuals caring for terminally-ill loved ones at home.
There are also after-hours support lines available but perhaps the most important thing is to ensure that families also have a good informal support network of people around them who can help with the day-to-day practicalities, such as meals and cleaning, and offer emotional support. Read more here.