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Quality of Dying 
Started by Digger
18 Nov 2013, 12:38 AM

As a hospice volunteer, i am seeing an increasing number of clients who want the option to end their life and in fact, i have such a client now.

Fear of loss of control, pain and isolation are common themes among those who seek this option. In this man's case, he is afraid of losing control of his bodily functions. I know this because i asked him - "What is your greatest fear?"

The more we talk about the fear and the options, the greater the sense of control he feels, which is at the heart of the euthenasia or 'good death' debate. Can we have the death with dignity we want without the need to kill ourselves? I believe we can. But we need to talk less about quality of life and more about the quality of death and, get specific about what that will look like. Where do you want to die? When? How (as in who do you want present) and of course, What do you fear the most? Asking these questions can only help define the quality of the dying. I'm sure there are others, but these four must be asked.

Dale 
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Reply by JennJilks
18 Nov 2013, 2:22 AM

Truthfully, most of my clients are not afraid, nor do they want to end their lives.
I have the resource articles:
    1. A life review
    2. The five questions
    3. A good death
It is up to the family to make the best choice for the caregiver, not necessarily the care recipient.

A recent study came out saying that many caregivers regret a loved one NOT dying at home, when that was their wish. This is a shame. I wrote a long article about this. We, as volunteers, cannot lead our clients astray, and let them think that a home death is the best for exeryone. Nor should care recipients force loved ones to keep them at home. Having helped a family member wipe the feces off her mother's bottom was one of the most difficult things I have done. Sometimes the hospital is the best place, with the dearth of hospices for many. 

When you should not die at home... caregiver burnout, stress 

  • When your caregiver is burned out
  • When your pain isn't managed at home
  • When your caregiver is unable to keep you safe, clean, dry
  • When you cannot access suitable services at home
  • When your care provider is unable to administer medications (i.e., @ 2 hours)
  • When you are up at in the night and need 24/7 care
  • If you live in a rural area without local nurses, or palliative services 
  • If a hospice placement, or hospital bed is available.
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Reply by Digger
18 Nov 2013, 3:51 PM

Jenn,

Your Blog has much useful information, what an amazing resource.

I agree about the home death, in some cases it is just not possible. In BC only about 17% of death from natural causes is in the home but i suspect that is on the rise. The truth is, we have much more control in the home environment and this contributes to the quality of the dying experience for everyone.

You may not be seeing clients who want to end their lives but many of us are. I confess that until recently, i was not following the debate closely. When someone you know and love announces this preference it pushes buttons as it did with me when my client said, "You don't approve of my wish."

This has resulted in some interesting discussions and ones we need to have. If he were my father would i be booking a flight to Switzerland so he could swallow a lethal drink? Not easy to answer, especially for care-givers. Yet when I look at it from his point of view, it does seem attractive. Ulitmately, we make choices about how we live and how we die. I would not want it any other way.

Dale


 
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Reply by KathCull_admin
22 Nov 2013, 3:17 PM

Hi Dale

I was moved by your description of the conversations you have had with your client(s) and your honesty in saying your 'buttons have been pushed'. 
 
You spoke of interesting discussions you have had with clients - What do you think supports a safe space where sometimes difficult conversations about the quality of living and dying take place?  Have you  thoughts about how to initiate those kinds of conversations?   As you alluded, these conversations may be unexpected - do you have suggestions as to we can prepare ourselves for the unexpected conversation?   

Thanks so much for sharing your experience Dale. I look forward to hearing from you and others in the group. 
 
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Reply by Digger
22 Nov 2013, 6:04 PM

Hi K

I realize now that the choices others make around dying affect me, as much as their living did, even if i did not know them personally. I can feel the collective human dream, if that makes sense.

With hospice work I only meet them at the dying, I and many care-givers do not know the living/life part. In some ways, i don't care about the accomplishments or lack there of and this frees me to engage them in the dying journey, without agenda - often in ways friends and family have trouble doing, at least at first.

it took me awhile to get this. Now, I ask, as i did several days ago, to a man with end stage emphysemia, "Where do you want to die?" and, "When do feel that will happen?" "At home and in less than a year.", were his replies. "i knew before the diagnosis that something was not right.", he added. "What are you most afraid of?" I asked. "I don't know how to let go and i am worried about my fourteen year old son.",  he replied.

I am only asking what dying wants answered: when, where, how and what are you afraid of. It seems to me that we have great control around these things and any and all considerations or attempts at an answer increase the liklihood of a graceful and dignified exit, what most of us say we want.

His answers have provided us with the context for the dying journey to unfold and i now know what quality of dying looks like for him. The courage it took to speak them will, i hope, help make his death smooth and full of grace, love; a model i can follow when my time is near.

Dale
 
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Reply by womynstar8
07 Dec 2013, 9:35 PM

HI Dale, I have stopped using the term 'quality of life', because we really don't use it as the opposite of death.  Rather, I used both 'quality of living' and 'quality of dying' -- recognizing that while they are both happening at the same time at the end of life, they are different perspectives and experiences.
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Reply by NatR
08 Dec 2013, 8:45 PM

Hi Womynstar8,

quality of living, quality of dying definitely sound good - but isn't quality of life in a sense - the minute by minute ,  hour by hour, of each day we live right up to the last day? 

I totally agree with you;) - and am thinking about the fact that from the minute we are born we are already heading toward our destiny with death, that we are essentially "terminal" .

i would love to see everyone have the comfort and be able to expect that their last days on earth are as important as their beginning was...  so many people don't have the comfort of others to be around them - and I think everyone should have that.  No one should die alone.

thank you,
NatR 
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Reply by womynstar8
09 Dec 2013, 12:07 AM

Hi NatR,

Actually your "the minute by minute, hour by hour, of each day we live right up to the last day?" is one of the reasons that I started using 'quality of living'.   'Life' is a noun -- the whole of our lives (which is really 'our lifeterm') or the whole of life on this planet.  'Living' is a verb -- what we DO minute by minute, etc. -- which, of course, we are still DOing as we are actively dying as well.   

And yes, I agree -- we are, in fact, terminal beings -- moving towards our destiny with death from the moment of our birth; and maybe someday we will learn (or re-learn) how to honour our on-going living AND dying throughout our lifeterm.

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Reply by NatR
09 Dec 2013, 12:46 AM

Thank you for clarification;) appreciate it!
natR 
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Reply by Digger
09 Dec 2013, 3:04 PM

Hello W8 and nR

The language around dying is less than exact, so thanks to both of you for wading in.

What the dying person is truly experiencing has a quality to it that is hard for the care team and loved ones to appreciate. Language slips away at the end and other means to communicate must be used. "Squeeze my hand if this makes sense". Dying propels us into an altered state of consciousness, not unlike dreaming. For those with dementia, this can take place years before the actual death.

Most people are simply not comfortable around these altered or dreamtime states - especially medical people. A common reaction is to increase medication when they see the dying person entering one of these intense and meaningful internal states.

We need to explore our altered/dream states because dying people can sense our willingness to go there - the definition of 'holding space'. There are no words to describe this level of presence and sharing of the dream state, yet it does have feeling of quality to it.

Dale 
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