When life is coming to a close: three common myths about dying

 

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Dying at home isn’t necessarily a good death.
from http://www.shutterstock.com.au

Sarah Winch, The University of Queensland

On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.


Read more – A real death: what can you expect during a loved one’s final hours?


Myth 1: positive thinking can delay death

Continue reading

Palace of Care / I think therefore I am? #gotjnrbak The final update.

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What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:

  1. Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
  2. Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.

Continue reading

Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading

Palace of Care – Parallel Lives

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Cape Reinga the northern-most tip of New Zealand, where the spirits of Maori depart on their final journeys. Photo by Gadfium.

The first time I met the young ladies I had been cross-covering at the hospital, and was taken to see each of them as they both had severe pain and discomfort. They came from completely different backgrounds, had lived completely different lives but somehow ended up on the same journey.

About a week or so later they had both been admitted into our inpatient unit for pain control. Adjustments were made and they became more comfortable, but a few days later pain had returned again, as well as other problems. We had to aim at constantly moving targets, and so it would be over the next three months of their individual roller-coaster rides.

The similarities were startling; the same diagnosis, the same poor response to treatment, and in the end the same prognosis. What was completely different was their individual experiences of the same outcome. Continue reading

I think therefore I am? – A thought provoking interview with Cory Taylor

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Photo by Britt Reints, used via creative commons

Driving to work on Saturday morning I listened to RNZ National’s Kim Hill interviewing celebrated Australian novelist Cory Taylor. Cory talked about the experiences that led to her writing her last book, Dying: a Memoir (Text Publishing), while dying of metastatic melanoma with brain metastases. Topics discussed include Euthanasia, Palliative Care, and writing about dying.

You can listen to the RNZ National interview here.

The Hairy End: or, the bad shit.

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Palliverse contributor Elizabeth Caplice shares this candid post with us. Thank you, Elizabeth.

sky between branches

i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.

but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline.  i am now, without question, terminally ill – which means, my  life expectancy is under 12 months.  for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now.  his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures.
it’s my…

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Santa, death and the Easter Bunny – how to have that hard talk with your kid via @ConversationEDU

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Santa, death and the Easter Bunny – how to have that hard talk with your kid

Peter Ellerton, The University of Queensland

There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be doing them a favour by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, glib answers won’t do.

We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when.

The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable.

Children are not empty vessels

Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do – to explain how the world works and to create meaning.

It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view.

We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world.

We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.

One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.

There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world.

The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.

The only way to know how they currently see things is to talk with your child – a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in conversation.

The second is to treat them as rational beings capable of making sense of what is going on around them.

Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.

I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.

Two-way exchanges

The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them – we also talk so we can understand each other.

This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in social competence, in which we reason to solve problems through discourse and social interaction.

As the Russian psychologist Vygotsky wrote in Mind and Society, children first learn a competence socially and then internalise it.

Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.

To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues.

This is a key component of teaching resilience – and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be less resilient than they could be.

Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills.

So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.

Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.

The Conversation

Peter Ellerton, Lecturer in Critical Thinking, The University of Queensland

This article was originally published on The Conversation. Read the original article.

NICE guidelines for end of life care

The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care in the UK.

In response to the Neuberger report and the demise of the Liverpool Care Pathway, new evidence based guidelines have been developed.

This guideline includes recommendations on:

In my state, Victoria Australia, the VEC (Victorian End of life Coordinating Program) is undertaking similar work, and plans to release a Victorian end of life care plan soon.

In Australia, we have not had the negative stories and experiences seen in the UK; because the LCP was implemented in a better way? The stories coming out of the Neuberger report were shocking: I cannot imagine any patient being denied a drink when requested “because she is on the LCP”. However the LCP has also been withdrawn locally in response to the negative findings delivered in the UK.

I will be participating in a pilot of the new end of life care plans which will replace the LCP locally. I am looking forward to seeing the final version.

Thoughts, dear reader, about the terminal care of the LCP?

 

How does it feel to be young and dying?

ElizabethCAplice

Palliverse welcomes a new contributor today. Elizabeth Caplice is an archivist on hiatus. She has Stage IV colorectal cancer, and writes about cancer, and how it intersects with life, particularly in younger adults. Elizabeth has shared a recent photo, to show that “stage IV cancer looks far broader than just some elderly hands with a cannula in them.” (Try doing a Google image search for “palliative care”.)

We recommend Elizabeth’s excellent blog  Sky Between Branches and her Twitter feed. As always please leave responses in the “Comments” box below.


 

Today, I saw my oncologist, and got dealt more bad news.  Stage IV cancer life is mostly bad news, and you come to expect it.  The cancer has spread, again, after only two weeks off chemotherapy – which I needed to take due to my blood count consistently dropping to dangerous levels.  He gently told me that if it was in my bones now, it wouldn’t be shocking, because I was diagnosed with Stage IV rectal cancer a year and a half ago.  I have done remarkably well.  Continue reading

To die at home or in hospital? Aussies want one but we fund the other via @ConversationEDU

Nikki McCaffrey, Flinders University

Where do you want to die? Provided symptoms can be controlled, most people at the end of life prefer to die at home. However, just over half of Australians who died in 2011-12 died in hospital.

In the same year, about A$2.4 billion was spent on hospital care for people aged 65 or older in their last year of life. But only a small fraction of that amount is spent supporting people to die at home.

Public money is being wasted on ineffective and inefficient treatments and health services which do not meet patients’ and families’ needs and wishes at the end of life.

This money would be better spent on palliative care services. Among other benefits, these more than double the chance of dying at home through the provision of home-based support services such as nursing.

Health funds spent on treatments and health services of negligible and questionable value, such as chemotherapy at the end of life, should be reallocated to palliative care services. This would improve our chances of dying well and in accordance with our wishes.

Palliative care is care provided to people living with a terminal illness where a cure is no longer possible. The aim of palliative care is to achieve the best quality of life possible for patients and their families during the illness and after death by relieving symptoms, addressing emotional, social and spiritual needs and reducing suffering.

This type of care is provided by teams of assorted professionals such as chaplains, doctors, nurses, pharmacists, physiotherapists and social workers. It is provided across all types of settings, including hospitals, hospices, residential care facilities and at home.

A recent report suggested investing A$237 million in providing palliative care services at home rather than in hospital wouldn’t raise the total health care spend but would increase the proportion of Australians dying at home from 14% to 30%.

High-quality palliative care is person-centred and compassionate. Emerging evidence suggests this type of care could even lower health costs, mainly by reducing hospitalisations at the end of life.

Palliative care in hospital

Inevitably, and appropriately, some people will need or desire hospital care at the end of life. The Australian Institute of Health and Welfare’s recent update on palliative care services in Australia showed that over the past ten years there has been a 52% increase in hospitalisations for which the main purpose of care is palliation.

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This trend will continue rising due to our increasing, ageing population and earlier warning of death.

In 2012-13, 42% of people who died in hospital were receiving palliative care. Providing specialised palliative care in hospitals, particularly early on, can reduce hospitalisation costs by shortening the hospital stay and reducing intensive care and laboratory costs, as well as improving quality of life.

What about informal care?

In 2011-12, Australia spent A$140.2 billion on health. Roughly a third of total health costs is associated with people in the last year of life.

But this estimate does not include costs to the individual or their family. Recent research suggests as much as a third of total spending on caring for people at the end of life falls on family and friends.

Without the support of informal carers, home-based care at the end of life would often be unachievable. Smaller, more geographically spread out families, higher divorce rates and changing communities mean these support networks are likely to shrink at a time when the need for them is growing.

When planning health-care services in this setting, it is essential we also think about informal care costs. We need to make sure we avoid over-burdening families who are a vital part of end-of-life care.

Achieving a better death

Without adequate palliative and end-of-life care, people will continue to be cared for and to die in hospitals despite most Australians wishing otherwise. Patients will have a poorer quality of life at the end of life. Families will suffer unnecessarily. Care will not be provided efficiently.

We are all going to die, but how will we die? Investing in palliative care services will improve our chances of dying well and in accordance with our wishes.

The Conversation

Nikki McCaffrey, Health Economist with Palliative Care Clinical Studies Collaborative (PaCCSC), Dept Palliative & Supportive Services & Flinders Health Economics Group (FHEG), Flinders University

This article was originally published on The Conversation. Read the original article.