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Is death painful or more like uncomfortable?

The subject of painful death came up during a recent discussion about the palliative care needs of the elderly.

“It’s probably more accurate to describe the discomforts of death, rather than pain at death, since for most people it is uncomfortable rather than painful,” a palliative care nurse explained.

That’s very reassuring because a lot of us assume that dying itself is very painful. Maybe that’s because when people die of diseases like cancer, pain is involved and it needs to be controlled. But at least 60 per cent of us will not die of cancer and many natural deaths in old age are so peaceful you can understand the description that the person simply ‘slipped away’.

“This means that in those natural deaths of old age, a patient might need a little bit of morphine because breathing becomes uncomfortable and some midazolam to help with anxiety and agitation, but not really anything else,” Sue explained.

It’s a bit of a paradox, but not very long ago, morphine wouldn’t be prescribed as breathing became more uncomfortable, for fear it would cause respiratory depression. The thinking on this has changed, because palliative care specialists realise morphine actually helps with breathing discomforts. This is because it helps ease anxiety caused by the sensations that come with breathlessness and many of the changes in breathing close to death.

So where does that leave us when talking about the end-of-life needs of patients in nursing homes?

Do we need to significantly ramp up access to palliative care in them, or would this be a massive over investment of resources that are not needed and could be better directed elsewhere?

This is a really important question.

It’s been pointed out by Rohan Greenland, CEO, Palliative Care Australia: “While approximately 80 per cent of people aged 65 years and older and who die in Australia used aged care services in the 12 months before their death, relatively few have accessed specialist palliative care.”

Nigel McGothigan from Leading Age Services Australia, in a guest ELDAC (End of Life Directions for Aged Care) blog quantifies this a little more: “It has been reported only one in six people who died in residential aged care received funding for palliative care (AIHW 2016).”

Maybe over the last three years this has improved. But Australians are still telling stories of bad experiences of family members dying in nursing homes, without access to appropriate palliative care. This is not in circumstances where an uncomfortable death is occurring but with one that’s painful because of the disease causing the death.

Palliative care specialists point out that to have them attending to each death in nursing homes would be a massive waste of resources and would worsen the problem of too much red tape.

So we need to be cleverer about separating the needs for  two different groups who are dying: the elderly who are likely to have no pain and those who will. The information is easily accessed by evaluating everything we can find out about the disease and separately, everything we can find out about the person.

So, who in the facility is dying of cancer or a similar disease that requires the treatment of pain? Who is not actively dying, not unwell but extremely frail and spending most of their time asleep? Is the elderly person who is curled up and appears to be completely peaceful really pain free? What do their family think? Are they being turned and moved regularly enough to avoid pressure sores?

Has the person who is elderly and suffering from dementia, and consequently was expected to die in the way of an elderly person with extreme, end of life dementia now taken a dramatically different turn because they’ve developed, for example, cancer? Do our staff have the knowledge and resources to deal with this very different scenario?

What if the person is non-communicative because of their dementia but vocalises, that is, calls out a lot. When that person is in pain, and needs pain relief, how does anyone know that, and how is that to be managed?

Working through this can seem easier than it is.

The Australian ELDAC, End of Life Direction for Aged Care initiative is not just about helping elderly people in nursing homes develop their end of life directives. It is also engaging directly with improving the way palliative care is delivered in nursing homes.

So maybe if you’re a little unsure about how palliative care will be managed in your family member’s aged care facility, you can ask the director of the facility if they’ve engaged at all with the ELDAC process.

ELDAC facilitators will work with nursing homes to improve their approach, at no cost to the organisation – which  means costs aren’t passed on to families. They will provide educational resources and work on creating links to major teaching hospitals with palliative care teams working in them.

To find out about ELDAC’s new approach to improving palliative care in nursing homes, go to:https://www.eldac.com.au/Portals/12/Documents/Expression%20of%20Interest%20-%20Sector%20Engagement%20GrantsV2.pdf

To read more of Rohan Greenland’s discussion, go to:https://www.palliaged.com.au/TabId/4451/ArtMID/9097/ArticleID/647/Improving-the-provision-of-palliative-care-in-aged-care.aspx

To read Nigel McGothigan’s guest ELDAC blog, go to: https://www.caresearch.com.au/caresearch/TabId/3781/ArtMID/6000/ArticleID/400/End-of-Life-Care-evidence-based-tip-sheets-for-all-aged-care-staff.aspx

For more reading go to: https://good-grief.com.au/why-cpr-is-often-not-compatible-with-a-quiet-death/

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