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Old 03.06.2014, 21:11
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Re: EXIT would you consider being a member?

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When it comes down to money - which it will, eventually, as it always does - you'll get your answer loud and clear.
This is the reason I worry about the direction that society's attitudes towards end of life - and thus policy - is heading.

Like other posters, my views on dying are influenced by my experiences. Eldercare (for family in the US) has been my primary focus for the last decade; I've had endless discussions with physicians, nursing staff, social workers - and with the bureaucrats who control a large part of access to services.

Having first hand navigated the bureaucracy, I do worry about that end of life options are being defined by cost pressure.

---

Suicide is not the only way to avoid dying in pain and suffering. Palliative care is the 'third choice'. With palliative care one can be kept comfortable, supported both physically and emotionally, and die naturally.

There is a lot wrong with the US health care system, no doubt. But one thing US public health care (currently) gets right is funding hospice care.

Once a doctor determines that a patient has less than six months to live the patient is eligible for a hospice program, the expenses of the program are paid by Medicare. I am so grateful that this program exists as it means that money does not have to be a factor in the comfort of one's final days.

Hospice is palliative care - this is not prolonging life, but rather allowing the dying process to happen while mitigating pain and suffering. A hospice patient has access to whatever pain meds are necessary, there are no restrictions. But it's far more than medicating - it's all about care. It's about valuing the person until the end.

In the hospice programs my father and MIL used the patient has his own care team - a coordinating social worker, nurses and aids trained to work with the dying, and a raft of services designed to keep the patient comfortable and emotionally supported to the end. One may stick with one's own doctor - who presumably has known the patient for years - if one wishes to.

Via hospice, my father and MIL had access not only to physical comfort but also to emotional support such as counseling, massage therapy, music therapy, visiting pets therapy. Whatever it took to make the brighten the patient's day, to ease their fears.

Hospice also provides support, both practical and emotional, for the family - and most importantly helps us help our loved ones through the dying process.

My father was an Alzheimer's patient; the hospice staff were able to reach him at a level that where other medical professionals couldn't. MIL found it difficult to come to terms with the inevitable, thanks to support from hospice she found emotional and spiritual comfort. Both died at peace.

Had we not had access to this outstanding program both dad and MIL would have faced a very different end.

(From what I've read, not many people in Switzerland even know that palliative care is available here, as the assisted suicide debate has overshadowed discussion of this option.)

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But hospice is expensive.

As healthcare costs rise, what will happen to these services that help the dying? As suicide becomes the acceptible choice, will resources be taken away from palliative care? And what frightens me most: will there come a time when the choice is no longer mine to make?

IMO, based on what I see daily in eldercare, I worry that the pendulum has swung too far. Society already devalues the elderly, begrudges resources spent on them.

As that excellent BBC article linked by Island Monkey discusses, when one is young and healthy one perceives quality of life very differently than when one is elderly, ill, or disabled. When my time comes I certainly do not want a 30 year old doctor judging my quality of life or making a call to end it - because we do not use the same scale of measurement.

---

Given the current state of US finances, I have no fear of being hooked up to machines and kept alive against my will. Rather I fear the opposite:

As suicide becomes more common, how long before some policy wonk decided that a lot of money could be saved by no longer funding hospice programs?

How long before a doctor - or worse, a bureaucrat - decides that a patient's value to society is not worth the cost of caring for him? How long before a patient is not even informed of his options?

I only know of the Liverpool Care Pathway from what I read in the Daily Wail. (i.e., allegations of financial incentives paid to trusts based on the number of patients put on the LCP) But DM hype aside, if in the UK decisions are already being made unilaterally, without the patient's consent - that makes my blood run cold.

---

I would never choose EXIT for myself, but I am a proponent of self-determination. Emphasis on the 'self' part. Since the abortion comparison has already been made, I'll turn to Bill Clinton's quote: Like abortion, assisted suicide should be safe, legal... and rare.

But given that the pendulum has swung so far - how do we safeguard the vulnerable?
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  #162  
Old 03.06.2014, 22:02
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Re: EXIT would you consider being a member?

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Suicide is not the only way to avoid dying in pain and suffering. Palliative care is the 'third choice'. With palliative care one can be kept comfortable, supported both physically and emotionally, and die naturally.

(From what I've read, not many people in Switzerland even know that palliative care is available here, as the assisted suicide debate has overshadowed discussion of this option.)
Here is a link to a list of palliative care centers in Zurich (quite a few) - my impression from nurses I know is that people, (at least in Zurich) are informed of this option.

http://www.palliative.ch/de/offerte/...ne/zuerich-zh/
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  #163  
Old 04.06.2014, 08:52
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Re: EXIT would you consider being a member?

I just want to clarify. Palliative care is not necessarily hospice. In the US, hospice generally is used once the individual is expected to live 6 months or less - at least for admission and insurance purposes. But palliation can be applied in cases where death is less imminent, and in fact in advanced cancer patients (probably metastatic disease but the article i read did not specify), palliative care has been shown to increase survival and decrease caregiver frustrations - depression, dissatisfaction. Elderly patients often recieve palliation - comfort, mobility and pain management. I believe that there is a movement to separate hospice and palliation - people are afraid of palliative care because they believe it means imminent death and that is not always the case.

However palliation and hospice are tied together. A friend of mine died late last year in a palliative care center in another kanton.
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  #164  
Old 04.06.2014, 10:08
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Re: EXIT would you consider being a member?

Thanks, Edot. That is helpful and helps me understand the two.

I just wrote a long response and it got eaten somewhere in the ether so I'll try to be more succinct. I'm concerned that hospice and palliative care, as good and helpful as they are, can't substitute for having the right to decide to end your own suffering, if that is what you truly desire. I think that all of these options should be available.

I have the utmost respect for those caring for the terminally ill or the gravely ill, whether they be healthcare professionals or family. They don't get enough support or respect, imo. I think that the folks on the front line, most of the time, are doing their best to relieve suffering and pain. However, palliative care is not always successful. Pain management is an area that still baffles and there's a lot of disagreement on treatment, isn't there?

One thing that worries me is when economic concerns or politics influence how end of life care is administered or what pain meds can be prescribed. I trust the folks on the front line but not the penny counters and vote chasers who pull the strings.

Our friend in Seattle who was in the end stages of ALS in hospice care, was "allowed" to refuse food and water so that she could die before the really painful end. She would have much preferred to have an easier way to end it.
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  #165  
Old 05.06.2014, 15:40
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Re: EXIT would you consider being a member?

Something new to add, did anyone watch "My last summer" last night on CH4?

http://www.channel4.com/programmes/my-last-summer
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  #166  
Old 05.06.2014, 16:00
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Re: EXIT would you consider being a member?

I'm in Mirfield's 'slippery slope' camp when it comes to the issue of euthanasia.

One I haven't heard before is that of an elderly/sick person who for the most noble of reasons, wants to terminate their life because they don't want to be a burden on their kids, society etc.. They still wish to live, but not if they feel selfish in doing so.

Now that may sound ridiculous today, but in an increasingly permissive society (e.g. BE/NL) where their peers are increasingly taking that route, and where it appears to be the 'elephant in the room' when speaking to their doctors, family etc.. Well I shudder to think
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  #167  
Old 05.06.2014, 16:11
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Re: EXIT would you consider being a member?

Getting help and support to allow you to cut short the pain and indignities related to a terminal illness is very different to 'euthanasia'.
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  #168  
Old 05.06.2014, 16:15
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Re: EXIT would you consider being a member?

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hospice generally is used once the individual is expected to live 6 months or less
in the UK generally much less than that even - around 3 months.
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  #169  
Old 05.06.2014, 16:19
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Re: EXIT would you consider being a member?

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Getting help and support to allow you to cut short the pain and indignities related to a terminal illness is very different to 'euthanasia'.
Euthanasia is a very broad term, which I believe covers the example you give.
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  #170  
Old 05.06.2014, 16:25
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Re: EXIT would you consider being a member?

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i'm in mirfield's 'slippery slope' camp when it comes to the issue of euthanasia.

One i haven't heard before is that of an elderly/sick person who for the most noble of reasons, wants to terminate their life because they don't want to be a burden on their kids, society etc.. They still wish to live, but not if they feel selfish in doing so.

Now that may sound ridiculous today, but in an increasingly permissive society (e.g. Be/nl) where their peers are increasingly taking that route, and where it appears to be the 'elephant in the room' when speaking to their doctors, family etc.. Well i shudder to think
+1
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  #171  
Old 05.06.2014, 16:26
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Re: EXIT would you consider being a member?

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I'm in Mirfield's 'slippery slope' camp when it comes to the issue of euthanasia.
From your context, I'm not sure I'm in the same camp.

I really do understand those fears, but I don't think you can withhold what I see as a fundamental right because of something that may happen if it is not properly regulated (and by "properly" I'm not including a "here today and gone tomorrow" politician).
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  #172  
Old 05.06.2014, 16:43
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Re: EXIT would you consider being a member?

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Getting help and support to allow you to cut short the pain and indignities related to a terminal illness is very different to 'euthanasia'.

I think it's largely semantic. Palliation also involves help and support, but the "cutting short" thing is suicide, voluntary euthanasia, or whatever else one might call it.

Lots of people with terminal disease end up with a form of passive euthanasia. Pain meds in regular doses depress respiration, while still receiving oxygen (which doesn't prolong life, just keeps them comfortable).

One of the problems in all of this is that the same word creates different reactions in different people and these concepts are understood differently.
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  #173  
Old 05.06.2014, 16:44
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Re: EXIT would you consider being a member?

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From your context, I'm not sure I'm in the same camp.

I really do understand those fears, but I don't think you can withhold what I see as a fundamental right because of something that may happen if it is not properly regulated (and by "properly" I'm not including a "here today and gone tomorrow" politician).
My point was that you can't regulate human feelings and emotions. In the example I gave, the person will categorically and defiantly state their wishes and may fool all the tests and questionnaires. However deep down it may not be what they really want. We recognise the fallibility of things like polygraph lie detectors, and yet think we can completely screen out false positive from a person's consent to euthanasia?
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  #174  
Old 05.06.2014, 16:47
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Re: EXIT would you consider being a member?

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My point was that you can't regulate human feelings and emotions. In the example I gave, the person will categorically and defiantly state their wishes and may fool all the tests and questionnaires. However deep down it may not be what they really want. We recognise the fallibility of things like polygraph lie detectors, and yet think we can completely screen out false positive from a person's consent to euthanasia?

That, and people change their minds. This is a decision that once made, no reversal is possible.
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Old 06.06.2014, 01:10
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Re: EXIT would you consider being a member?

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My point was that you can't regulate human feelings and emotions. In the example I gave, the person will categorically and defiantly state their wishes and may fool all the tests and questionnaires. However deep down it may not be what they really want. We recognise the fallibility of things like polygraph lie detectors, and yet think we can completely screen out false positive from a person's consent to euthanasia?
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That, and people change their minds. This is a decision that once made, no reversal is possible.
I see your point edot, but the "people change their mind" line can be abused by people who are unwilling to support assisted suicide, and with that they could really hinder an individual's right to die. There's a possibility of error in everything we do, but if all people who are capable of helping people die in a legal way were to take that stance and in consequence refuse to help, a humane way of dying would be much harder to have access to than it is at present. With abuse of the quoted phrase, I see the risk of assisted suicide being made less accessible to those who want it.

This of course doesn't mean that people who are capable of assisting should be forced to do so, that should never ever happen, one should only ever help voluntarily. EXIT volunteers won't proceed if there's even the slightest doubt of the individual's intent to die.
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  #176  
Old 20.07.2014, 18:47
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Re: EXIT would you consider being a member?

The Dignity in Dying campaign in the UK (www.dignityindying.org.uk) is gaining momentum- and had its second reading with long debate in the House of Lords on Friday.
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Old 20.07.2014, 18:54
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Re: EXIT would you consider being a member?

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That, and people change their minds. This is a decision that once made, no reversal is possible.

Sorry I missed this post as I was away. What do you mean Edot? Why is the decision not reversable? Being a member of Exit means that you would like to have the CHOICE, should you ever want or need to? This choice remains right to the very end with Exit- as they will always interview the member after the request is made, on their own, and have been trained to ask the tell-tale questions about any pressure born to bear by anyone, or any doubt or hesitation. Only when the Exit volunteer is totally satisfied that the conditions are right- wii they make the necessary arrangements. Again, on the day chosen, the member will again be asked the relevant and tell-tale questions. If there is ANY sign of doubt or hesitation, or outside pressure apparent, etc- the deed will be cancelled and the member given advice and support and explained what the options are. Only when, on the day and just prior to the Exit- the member is absolutely clear without any hesitation or doubt- will the deed go ahead. The right to change your mind remains to the very end.
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  #178  
Old 20.07.2014, 19:45
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Re: EXIT would you consider being a member?

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Sorry I missed this post as I was away. What do you mean Edot? Why is the decision not reversable? Being a member of Exit means that you would like to have the CHOICE, should you ever want or need to? This choice remains right to the very end with Exit- as they will always interview the member after the request is made, on their own, and have been trained to ask the tell-tale questions about any pressure born to bear by anyone, or any doubt or hesitation. Only when the Exit volunteer is totally satisfied that the conditions are right- wii they make the necessary arrangements. Again, on the day chosen, the member will again be asked the relevant and tell-tale questions. If there is ANY sign of doubt or hesitation, or outside pressure apparent, etc- the deed will be cancelled and the member given advice and support and explained what the options are. Only when, on the day and just prior to the Exit- the member is absolutely clear without any hesitation or doubt- will the deed go ahead. The right to change your mind remains to the very end.

Since you have to drink the liquid yourself or open the valve if you can't swallow, you can change your mind about 2 minutes before death. Quite a high percentage of people don't go ahead after the drugs have been prescribed so pretty much the last moment.
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  #179  
Old 20.07.2014, 20:02
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Re: EXIT would you consider being a member?

That's pretty much my line of thinking.
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Old 30.08.2014, 20:04
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Re: EXIT would you consider being a member?

Think this is a very sensitive subject where nobody really has got the right to say what another person/family feels, I read an article on Dignatas ( another end of life clinic ) written by an ex-nurse that really put me off the idea if I was put in this situation with a family member, however if the pain or suffering is too much to bare who has the right to say what should/can happen
Just a thought anyway
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