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When to start the conversation about 'end of life' wishes/planning 
Started by kathykastner
11 Mar 2014, 2:31 PM

I regularly see articles and initiatives that encourage everyone to talk about dying and death, and to make end of life wishes and plans.  I know some U.S-based initiatives encourage using the Thanksgiving family holiday to talk about death, but to me this just seems wrong atmosphere.

As fraught as it is for those in good health, I think it can be even more emotional and upsetting when living with a terminal illness, or caring for someone with a terminal diagnosis.

Is there such a thing as 'the right time' to have this conversation/these conversations?
And is there a way to protect ourselves and our loved ones from the emotional onslaught the conversations may provoke?


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Reply by Digger
13 Mar 2014, 1:51 PM

Kathy,

I would recommend letting go of the idea of protecting loved ones when it comes to dying. Sounds a bit harsh but, in my view, the focus should be on your response.

If you are volunteer for Hospice or similiar organization then you receive training, meet others and begin working with clients in either grief or palliative care.

Death Cafe, you can google this, based in London has hosts in many larger cities. People get together and talk about death over cake and tea. I have hosted a few of these out here on Vancouver Island and am always amazed by the depth of discussion between people i know little about.

An interest in death and dying has bearing on every aspect of living. Gardening has many great metaphors in this regard. We need to know how to die and when to let go. We need to see more people die a natural death without waiting for a complete breakdown of body and mind.

A great question to ask a friend over coffee: How and where do you see your death unfolding?

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Reply by kathykastner
13 Mar 2014, 3:48 PM

Thanks for taking the time to respond, Digger. I have huge respect for you Hospice volunteers - and can't help but think we'd all benefit from the training you received. 

As it happens, I talk about dying and death every chance I get - having developed a website  - BestEndings.com - based on my own realization of how little I knew about medical interventions as life winds down, or even what to consider to make an informed decision. 

One of the added benefits  - as you pointed out - the depth of thought-provoking conversation  - albeit on an abstract basis (we're talking about my website and my findings, it's not me specifically asking ' how and where do you see your death unfolding"

I do know about Death Cafes, thanks. Since participants are self selected, that awkward 'how to start' is one step down the line. 

Interesting about the term and concept of allowing a natural death (A.N.D): as i read in a blog written by palliative care physicians, there's much interepretation about the 'natural' part. For example, are meds to ease suffering 'natural', is it natural to help heal bedsores with antibiotics?

I'm now on a palliative care steering commitee at a health centre with complex continuing care patients (Parkinsons, MS, Stroke, Traumatic Brain Injury, etc) .  I also have friends with auto-immune diseases (Rheumatoid Arthritis, Crohns) Their objective is to get back to, or get on with life.. and yet I would think their conditions would prompt or warrant the question you posed: How and where do you see your death unfolding.

But when in their journey to pose the question?
And in these complex cases, should answers be 'informed' by what health decisions likely lie ahead?
 
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Reply by Digger
14 Mar 2014, 2:58 PM

Kathy,

I took a visit to your web site - great information, so needed. You are farther down this road than your original post suggests.

Advanced directives are being used more and now we are seeing how well they really work. Not well unless the language is very clear. A judge in B.C. recently overruled a directive that used the words 'no heroic measures'. Too vague was the arguement.

I see nurses filling these things out and specifying what meds to give and even the doses! Sounds strange to me and somewhat 'un-natural'.

I no longer speak about quality of life with clients (who are palliative) but now use the phrase - quality of dying. Makes more sense, especially to the one dying.

I ask three questions right off the bat:

1) What is your prognosis, does it match how you feel and about the time remaining?

2) Where do you want to die?

3) What is your greatest fear?

These questions help them, the family and me create some context about the journey and what lies ahead, especially if they want to die at home death.

I wasn't always this direct until i saw the results of making assumptions or staying silent.

I am honestly not seeing many people have the death they say they want. Way too many drugs and well-meaning medical people willing to administer them. Yet i believe we can have end of life scenario we want. No pain, minimal intervention and fully conscious.

These things are a reflection of the life that went before, which for most, is largely unexamined. The reality is that we need to do some inner work prior to the big day.

Dale

 
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Reply by Xenia
16 Mar 2014, 3:52 PM

Good Morning from the Wet Coast of B.C.

This is the subject I have been wanting to discuss for a long time, mostly at night when I can;t sleep.  My husband and family have agreed that there should be no DNR that John wants to pass at home, if possible.

My question that keeps floating in my mind is:  What is the procedure to follow when he passes or should pass at home.  Whom do I call first, my daughter, my son in law, I know we have the papers for anticipated death at home.  I have been putting this off as I feel that maybe I am too involved in the caregiving of my husband and am looking too much for many answers that will come in time, however, I feel to be prepared is better than panicing when the time comes.

John and family have been involved in his wishes.  The Nurse came over and as a family were there when he was asked what his wishes were, that he could change his mind any time.  He could go to hospice or stay at home.  Our family doctor also let John know he can change his mind.  We are fortunate to have a family doctor who will visit our home and talk with us.  He was over this past Monday checking his meds and decided he needed to be put on longer lasting morphone as the other was on 4 hour and of course John hates meds but I see he asks for it on the time.  With his pain in check I realize now that he was bsing us that he had little pain until confronted with 8 out of 10. 

Do you have any insight into what to do at the time of passing.  We have the DNR on the fridge, the expected death at home papers filled and signed by our doctor.  I am well versed with his meds, etc however, wanting to know how to go about informing the family when the time comes, what the procedure is with his passing and waiting for the funeral home to come, etc.

You are both so informative that I was happy to read this email this morning.  It was just what I have been pondering for many days and was about to ask about it.  Thank you very much and awaiting your informed responses.

Xenia
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Reply by marstin
16 Mar 2014, 11:17 PM

Hi Xenia,

I know you were asking this question of Kathy and Dale but I thought that I would answer this also. It seems that you are very prepared so I wondered if you have considered handing off the responsiblilty of informing the family other than immediate, to someone else in your family? It makes a difficult time a little bit easier. If you have things set up with a funeral home, then you probably just have to phone them and they will do the rest. As my husband was being cremated, I had already contacted the person who would take care of things ahead of time so that he was ready when I called. Unfortunately, if it's in the middle of the night you will have to wait generally for a response until opening hours.

Hope this helps a bit.

Hugs,
Tracie
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Reply by Digger
17 Mar 2014, 2:24 PM

Hello Xenia,

Sounds like you are doing all the right things. He wants to die at home and you will be the primary care giver. The paperwork for a death at home, required in B.C. is in place.

A copy of the Anticipated Death At Home form completed by the doctor should go to the funeral home. DNR on the fridge.

When I companioned my ex-wife, she passed at home very early in the morning with myself and our son present, I kept her at home the whole day. I called two of her close friends over and we washed and dressed her body. Later that day i asked her father and several others if they wanted to come over to say goodbye. At about 4pm i callled the funeral home and they came over to pick her up. She was cremated and a week later we had an open house.

That was how it unfolded for me. She died of liver cancer at 58. She refused tradtional treatment and was not on any pain meds, other occasional tylenol.

I know this is rare. Her passing showed me what a home death could be like. I was thankful for my hospice training but still i learned much.

Follow your feelings and don't be afraid to say 'no' to medical intervention. John is in charge and you are supporting and comapanioning him.

Dale 
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Reply by Xenia
17 Mar 2014, 3:25 PM

Dear Dale:

What an endearing saying "companioned my wife", yes indeed we have been companions in our partners/husband/wifes daily.  My husband has been my companion for 58 years, just turned 85 and still has his wits about him.  He sleeps in a special bed and that seems wierd but then we have side by side beds so I am with him during the night.

Your information about preparing your wife's body meant a lot to me, as this is the question that has been buzzing around in my mind.  I would like to dress John, wash him and put his hands like he always slept, crossed across his lower chest.  Used to and still do bug him about he laying himself out before he dies.   He has slept like this for most of our marriage and is such a non mover in his sleep I had to check him out even when he was healthy.

This has made my journey a lot easier notl like climbing the Alps when I am only used to hills.  Our attitude in the Americas is different from India, etc as we fear death and I as a child had the experieince of a baby sister pass and the funeral in our home, the body stayed there for a number of days then was carried to our church, small town in the Prairies. 

I collected an article in a magazine from Life after death by Deepak Chopra.  I am not one of his followers but he had good advice, the bits in the article I have kept close.
I quote:  Q. Apart from fear, how else might we think about death. 
Answer:  Look at it as an opportunity.  You know Rumi (a poet) says: :
"My death will be my wedding day with eternity." Tagore writes so beautifully about the experience of death and its almost tantalizing you want to experience it.  It's an expansion of consciousness to be able to look at this and ealize that you're not a skin-encapulated ego that squeezed into the volum of a body and span of a lifetime.  The miracle of death is that we don't really die>"

I red that spiritual death was from a poem Rum and Chopra heard it and I thought it was so comforting I keep it by my computer and read it daily. 

"When I die I will soar with angels and I die to the angels what I shall become you cannot imagine"." 

This gives me much comfort as the fear of death is with us all. FEar of leaving loved ones, having loved ones leave us in death.  Fear of the unknown and finding no comfort in our way of handling death for ourselves or our loved ones.

I pontificate but you have opened up my mind and eyes and so much information from you that I feel I have learned much.

Xenia
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Reply by Digger
18 Mar 2014, 1:42 PM

Rumi is good or anything that feels expansive. Fear shows up when we contract and hold on.

Dying can be graceful and easy, like walking into a dream. Dying and dreaming, it seems to me, have much in common.

Your husband is fortunate to have a partner like you Xenia.
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Reply by Xenia
27 Mar 2014, 6:24 PM

Hello All:

I was feeling under the weather or just feeling sorry for myself and finally contacted the Hospice society in my home town.

First try no one available but I perservered and on Monday was in contact with a lady who was so easy to talk to. She asked me a lot of questions and let me ramble on and then suggested I meet with her.  I will look into this and see if I can get some respite care or change one of my days.

I told her I was sad at times and teary eyed and choked up.  She asked me if I let the tears come.  No, just a few as I was never a crier.  Music makes me sad and I can cry when I play a tune.  Perhaps because I have tried to be too strong all my life that when I break down it is a sign of weakness.

John is on more morphine and seems to be doing well.  He sleeps better at night as this relieves his pain.  Gives me more rest as well.

Today is a rainy day and I have been keeping busy to keep from thinking.  Did some jobs that needed doing: ie cleaned out the Dust buster, threw out some old spices and not worried about it, being thrifty I hate throwing things out, no I am not a hoarder just careful.  Thank goodness I prepared myself for work on our condo roof.  We were assessed at $6000.00 and somehow I managed to save most of it knowing that the roof would have to be replaced.  I figured that I needed money for John's passing and still needed to live so here I am glad that somehow my mind let me do the right things even though I doubt myself so much lately.

All for now thanks for listening.

Xenia
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