Die With Dignity at Home

[Calliope]

A few years ago I was walking down the street in the town where I have retired to, when I saw a small group of people around an old lady who was lying on the footpath. They were waiting for the ambulance. A doctor from a nearby clinic was bending over her, I heard him say "how old are you dear". She whispered "91'.

She was crying. I thinkt she realised that, with a suspected broken hip, that day would be her last day of independent living. From now on every decision affecting her life woulld be made by somebody else.

ONLY 14 per cent of Australians die at home, despite seven in 10 wishing to do so, according to a report which has renewed calls for changes in policies and attitudes to enable people to see out their days with greater dignity.

The Grattan Institute’s Dying Well report found about half of Australians die in hospitals, and a third die in residential care.

The results place Australia at odds with other prosperous Western nations, with Australians dying at home at half the rate of their counterparts in countries including the US, New Zealand, Ireland and France.

Report co-author Hal Swerissen said the report highlighted the need for medical and community attitudes to change.

He said contrary to common assumptions, formal, home-based end-of-life care was often cheaper than institutional care.

“More than at any time in history, most people die when they are old, and are more likely than past generations to know when in the near future they are going to die,” Professor Swerissen said.

“That gives us a great opportunity to help people plan to die well ”” but we’re not taking it.”

The report recommended greater communication between those approaching the end of their life and family, friends and health professionals. It found the lack of such communication leads to people feeling disconnected and confused about the range of services available.

The authors also called for the widespread adoption of *advance care plans to ensure people’s end-of-life desires are met, as well as greater investment in community-based care to shift the focus from cures and *institutional care to supporting people’s wishes to die at home.

http://www.theaustralian.com.au/nat...-dignity-at-home/story-fn59nokw-1227073253825

I know that many forum contributors, like me, are getting long in the tooth, but still cherish their independent living. I suspect that the biggest enemies to independent living and the ability to drive, are falls and subsequent bone fractures.

There are many methods of bone strengthening, but I suggest the first step should be to have a bone-density scan and take it from there.

 

[Julia]

There does seem to be an increasing awareness of acknowledging and assisting the desire of people to die at home. It would be cheaper than absorbing all the costs of a hospital.

Your old lady, Calliope, might not these days need to regard a hip fracture as the end of the line. Modern surgical techniques will at least sometimes allow for a hip replacement and subsequent return to independence. Might be a bit of an ask at 91, however.

There needs to be much, much more discussion about the whole topic of old age and dying.
Thanks for raising the issue. Would be good to get some input from others. Everyone will have experienced some family deaths.

 

[pixel]

There needs to be much, much more discussion about the whole topic of old age and dying.

I don't think so, Julia.
Death comes only once per customer, but we each have 2 Billion or more seconds to live and cherish.
Therefore, I strongly believe it is far more important to discuss questions of a healthy and satisfying lifestyle. Done well and with empathy, we can assist fellow men (and women) many times over whenever someone finds it hard to decide which way to take at any of life's T-junctions.

Calliope's post, especially the recommendation to anticipate the consequences of a fall, and how to reduce the risk, is IMHO a very good start towards such a goal. As are the various constructive suggestions that were made in the "Depression" thread. And if I discard the plentitude of off-topic platitudes in the "Crazy Religion" thread, some helpful gems can be found even there.

Although Calliope's post starts with the word "Die", I take the words "Dignity" and "Home" far more seriously: they pertain to a person's life while he/she IS alive. I think it's far more important to focus on the quality and independence of an older person's years, to enable as many people as possible to live the way they wish to live and provide only as much or as little external assistance as they want and need. A far greater number of them will then be able to die with dignity at home; but that outcome would be merely a welcome byproduct of the changed attitude.

A person's right to determine time and manner of their END of life is an integral part of the above.

 

[SirRumpole]

A bit off topic , but I notice that Phillip Nitschke is at it again, recommending that long term prisoners be given the option of euthanasia.

I don't know why he would go down that track considering he started off wanting to assist the terminally ill

Does he want to get into the executioner business ?

http://www.abc.net.au/news/2014-09-...d-be-given-euthanasia-option-nitschke/5775680

 

[pixel]

A bit off topic , but I notice that Phillip Nitschke is at it again, recommending that long term prisoners be given the option of euthanasia.

I don't know why he would go down that track considering he started off wanting to assist the terminally ill

Does he want to get into the executioner business ?

http://www.abc.net.au/news/2014-09-...d-be-given-euthanasia-option-nitschke/5775680

I'd rather see the common theme as "quality of life".
We banish criminals from society; that may or may not be the best solution for them, but it most definitely is the best solution for their otherwise next victim. It may also be argued that prisoners shouldn't be "rewarded" with luxuries and easy living behind bars, lest it becomes an incentive to "early retirement".

So, if an inmate considers life behind bars a life not worth living, why not give him the freedom to opt out.

I have always seen personal choice and freedom as Dr Nitschke's main issue. That he started with the terminally ill would have to be seen as the thin end of the wedge that a majority of affected Australians will support. What the question really boils down to is the extent of personal freedom and responsibility. I find it paradoxical to tell somebody, you are fully responsible for your actions and their consequences, but then deny them responsibility for their life.

 

[Julia]

I don't think so, Julia.
Death comes only once per customer, but we each have 2 Billion or more seconds to live and cherish.
Therefore, I strongly believe it is far more important to discuss questions of a healthy and satisfying lifestyle. Done well and with empathy, we can assist fellow men (and women) many times over whenever someone finds it hard to decide which way to take at any of life's T-junctions.

Of course. But there's plenty of attention given regarding how to live a good life, how to make the most of what one has etc.

In contrast there is minimal attention given to the necessary discussion with family about what treatment you might want when an irreversible situation occurs, as it will for us all. The percentage of the population completing an Advance Health Directive (Living Will in some States, I think) is very low, something like 10%.

A substantial proportion of the population do not even have a Will.

So say you experience a catastrophic medical event, such as a stroke, and as a result are severely damaged, unlikely to ever recover to the point of being able to live a normal life. It happens all the time. And not just to old people.

What instructions have you left, given you are - in such a situation - unable to communicate your wishes, and with what authority will anyone caring about you explain to the medical personnel responsible for your treatment?

If you have left no such instructions, doctors will usually adopt the default position of sticking tubes in every orifice, hooking you up to all available machinery, and for what reason?
Mostly because they do not want, in the absence of any instructions from you, to be vulnerable to being sued by your family for failing to preserve your life. Is that what you want?
Some people do. They believe that while there is any vestige of hope, all treatment, regardless of cost or likelihood of positive outcome, should be carried out.

That is what we are talking about. Not some idealistic notion that 'living well' will automatically confer upon us a peaceful demise at the time and in the manner of our choosing.

I'm sure we all hope to die peacefully in our sleep. In reality the numbers who do are very small indeed.
As Calliope's quote tells us, despite around 70% wishing to die at home (regardless of it being peaceful or otherwise) only 14% do. And the percentage of that 14% that die 'well' would be much, much less.

So, whilst I understand and endorse the wish to make the most of every day of our lives, denial about the need for a plan for our eventual demise is not helpful and may well lead to our being suspended in a machine-induced twilight nothing for an indefinite period.

Quite apart from any personal perspective, such an expense on the health system is unjustified imo and would be much better applied to young people who have still a reasonable expectation of life ahead of them.

 

[Julia]

I'd rather see the common theme as "quality of life".
We banish criminals from society; that may or may not be the best solution for them, but it most definitely is the best solution for their otherwise next victim. It may also be argued that prisoners shouldn't be "rewarded" with luxuries and easy living behind bars, lest it becomes an incentive to "early retirement".

So, if an inmate considers life behind bars a life not worth living, why not give him the freedom to opt out.

I have always seen personal choice and freedom as Dr Nitschke's main issue. That he started with the terminally ill would have to be seen as the thin end of the wedge that a majority of affected Australians will support. What the question really boils down to is the extent of personal freedom and responsibility. I find it paradoxical to tell somebody, you are fully responsible for your actions and their consequences, but then deny them responsibility for their life.

Yes, agree completely. Had it not been for Phillip Nitschke we would not have reached even the point we have about being able to make personal choices about dying.

Surveys over now many years have shown around 80% of the population is in favour of voluntary euthanasia.
Yet that population is controlled by the religious Right who deny people that basic right.
It will change, eventually.

 

[medicowallet]

There does seem to be an increasing awareness of acknowledging and assisting the desire of people to die at home. It would be cheaper than absorbing all the costs of a hospital.

Cheaper yes
Accessible no

When working in the hospital, it staggers me the amount of cost shifting / shuffling in extremely inefficient ways. These people have no idea how to efficiently run a business / service.

The stupid thing with public hospitals is that there is one group of health professionals who call most of the shots, and their viewpoint is well looked after, but bugger the rest, and the patients along with them.

The other thing is that eg for palliative care, why would a practitioner go it alone in the community with limited support?

The health system is totally hindered by people who don't believe that it should be run as a business.

MW

 

[pixel]

Cheaper yes
Accessible no

When working in the hospital, it staggers me the amount of cost shifting / shuffling in extremely inefficient ways. These people have no idea how to efficiently run a business / service.

The stupid thing with public hospitals is that there is one group of health professionals who call most of the shots, and their viewpoint is well looked after, but bugger the rest, and the patients along with them.

Sad, but true, MW;
From personal experience, I can go even one step further and include private hospitals in that category.

At the onset of my Peripheral Neuropathy, I consulted a young surgeon who was recommended to me because he had had a string of successes in the operative treatment of spinal canal stenosis. (For readers unfamiliar with that term: SCS is a condition where lumbar vertebrae are pressing on nerves that exit the spinal chord in the lumbar region, causing them to misfire. In my case, the affected nerves conduct pain and pressure information from feet to brain and muscle control impulses back to help the feet keep the body in balance.)
The initial diagnosis was inconclusive as to whether his operation technique would bring me lasting relief or not. Unfortunately, he was one of those "bugger the rest", who had had a few run-ins with the "established" group.
Shortly before I was due for a follow-up assessment, I read in the paper that, after a lengthy dispute with the Health Administration, his contract was unlikely to be renewed. Another brief note shortly after mentioned that he had been suffering from Depression and found dead in his rooms.

The other thing is that eg for palliative care, why would a practitioner go it alone in the community with limited support?

The health system is totally hindered by people who don't believe that it should be run as a business.

MW

Palliative care is a joke. Here in WA, there are a few private aged-care facilities that cater for seniors with limited mobility; one of my dear friends, a writer, is in a similar situation as the lady in Calliope's initial report. Can only walk with two crutches, and since her husband, who was her carer, passed away, she lives alone in their tiny 1-br unit. I can't blame her for refusing to move into the Care Facility, which is organised and run as a one-size-fits-all at the level of Dementia patients: No privacy; no personal items like phone, computer, mementos; organised "entertainment"; piped music.

Should I deteriorate into a similar situation, not have a carer willing to push my wheelchair, help change the linen, or help me socialise with at least one or two "sane" people, I'm sure I'd also seek "treatment" from Dr Nitschke.

PS: Julia, I don't consider the above so much a discussion about dying, but still as planning for years of living. Making decisions for how I want to live under various hypothetical conditions is IMHO part of future life planning. To me, that includes making a Will, signing an EPA and instructions for medical practitioners in case of permanent disablement etc. But let's not debate semantics; if you consider that's a discussion about death and dying, by all means let's do it under this topic.

 

[Julia]

Cheaper yes
Accessible no

I don't know much about the accessibility and am going by reports that - with the baby boomers eventually reaching old age - there will be a requirement for a whole different approach to aged care. That's going to be some while away (I hope) and I've accepted the suggestion that governments will pay more attention to providing decent home care plans, even if they have to be partly paid for by the individual.
Which, if it happens, will raise a whole new argument about the non-affluent receiving sub-standard care.

The whole idea might be complete pie in the sky political soothing and come to nothing.

The other thing is that eg for palliative care, why would a practitioner go it alone in the community with limited support?

Well, I suppose that would have to change, or alternatively hospitals could expand to running an in-home palliative care system. It does happen to some extent now but is grossly inadequate.

The advocates of palliative care in their zest to ensure voluntary euthanasia continues to be eschewed, blithely offer assurances that most pain can be controlled. Talking to people in their last years, pain seems to be much less of a problem than
* the side effects of large doses of opiates
* the indignity of being unable to wash and use the toilet independently
* the indignity of being fed
* because of inadequate staffing, often being literally starved and dehydrated.

I can't blame her for refusing to move into the Care Facility, which is organised and run as a one-size-fits-all at the level of Dementia patients: No privacy; no personal items like phone, computer, mementos; organised "entertainment"; piped music.

Sounds appalling. Are there no alternatives? Here most of the nursing homes have single, ensuite rooms, some with doors opening to small terrace, about ten of which are grouped around a central living area and kitchen. This pattern is replicated probably ten times throughout the institution.

Still awful though, in terms of the inevitability of having to eat when they decree, etc and particularly horrible for people who are by nature solitary.

The woman who ran the establishment where my father existed for a few months before he drowned himself phoned me one day for permission to call for a psychiatric assessment simply because my father insisted he would not be forced to play bingo. She did not get that permission. I wouldn't play bingo either.

Separately a few weeks ago I described the dreadful experience of a woman under the 'care' of the Adult Guardian in NSW. Because she voiced her anger and misery at not being allowed to go home, even though she had the financial means to pay for care at home, she was held down by four people and injected with an anti-psychotic drug. She is now much more compliant, just a zombie which is what they wanted.

Should I deteriorate into a similar situation, not have a carer willing to push my wheelchair, help change the linen, or help me socialise with at least one or two "sane" people, I'm sure I'd also seek "treatment" from Dr Nitschke.

If his enemies haven't had him completely criminalised by then. And he's not going to be able to write you a neat little prescription for a lethal dose of a barbiturate. Unless I've missed something about what he is and is not able to do, he can only tell you the appropriate dose of Nembutal which you then need to travel to Mexico etc and find a veterinary supplies shop which will sell it to you.

Then you have to lie to Customs in your declaration that you are not bringing any prohibited products into the country. If you then get searched, it will certainly be confiscated and I don't know what penalties will be applied.
I certainly couldn't do that. Am a hopeless liar for a start.

PS: Julia, I don't consider the above so much a discussion about dying, but still as planning for years of living. Making decisions for how I want to live under various hypothetical conditions is IMHO part of future life planning. To me, that includes making a Will, signing an EPA and instructions for medical practitioners in case of permanent disablement etc. But let's not debate semantics; if you consider that's a discussion about death and dying, by all means let's do it under this topic.

OK, I understand what you mean now.

There is, however, as I'd have expected, minimal interest in the topic it seems. Also it becomes rather too personal for comfort if pursued much further than this, for me at least.

 

[Calliope]

There is, however, as I'd have expected, minimal interest in the topic it seems. Also it becomes rather too personal for comfort if pursued much further than this, for me at least.

Yes you are right. I made the mistake of mentioning the word "die" in the title heading, simply because that was the subject heading of the link. A discussion of dying, whether assisted or otherwise, was farthest from my mind. I wanted to avoid discussing the darker sides of ageing and talk about the quality of life that might be retained by living as independently as possible at home.

I know it is not achievable without some support from family, friends and neighbours and various support organisations, but it certainly beats the alternatives that you have pointed out.

The above article says;

The report recommended greater communication between those approaching the end of their life and family, friends and health professionals. It found the lack of such communication leads to people feeling disconnected and confused about the range of services available.

The authors also called for the widespread adoption of advance care plans to ensure people’s end-of-life desires are met, as well as greater investment in community-based care to shift the focus from cures and institutional care to supporting people’s wishes to die at home.

It makes sense to me, but as you say there is minimal interest.

 

[SirRumpole]

It makes sense to me, but as you say there is minimal interest.

I looked after my mother at home for a number of years after she had a stroke.

Without the support of Homecare and my employer this would not have been possible and she would have rotted in a nursing home.

Imagine how much money was saved for the taxpayer by this agreement, as well as improving my mother's quality of life.

These sort of agreements should be encouraged as far as possible.