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How do you define 'quality of life' and 'non-invasive treatment'? 
Started by J.D.
10 Nov 2013, 4:01 PM

We hear about the importance of Advance Care Planning so we make our wishes known and sign our Powers of Attorney for Personal Care, but that can still leave our Subsequent Decision Makers in great turmoil.  By sharing our story, I hope to enlighten others about complexities that may arise.

Our journey began when our 89 year old mother became weak and suffered serious breathing difficulties due to an internal bleed.  She was rushed from the Long Term Care Facility where she lived, to a hospital emergency room, where she was given a blood transfusion.  My siblings and I agreed that her condition would not sustain surgical intervention so palliative comfort care was in order.  Mom’s earlier wishes were clear that she wanted non-invasive, non-aggressive interventions when it came to end of life care.

Sounds straight forward, doesn’t it? 

The blood transfusion improved Mom’s symptoms for three weeks and then she was in distress again.  While I won’t go into detail, we had great difficulty navigating a system to provide Mom with a second blood transfusion.  Suffice it to say, that there are options available; each health care institution may have different programs, so don’t find yourself stalled by the first health centre, as we were.

Mom’s geriatric doctor and the nursing staff at the long term care facility advised that, in their experience, an elderly person would reject any future blood transfusions and that we should let Mom pass in the comfort of opioids.  We (the subsequent decision makers) disagreed.  If Mom was still having some quality of life as a result of blood transfusions, then we wanted her to continue receiving blood until her body did reject it.  Mom was complacent, she wasn’t complaining about the ambulance rides or time in emergency. 

After about the sixth blood transfusion, my sibling began to think that Mom’s quality of life was inadequate and we should stop the transfusions.  Mom slept a lot and it was getting more difficult for her to transfer for toileting.  So what is your definition of quality of life?  In my opinion, Mom still got a big smile on her face when her kids visited her and she enjoyed eating good food.  While her memory was poor and her condition was weak, to me she was still teaching us something, by being so complacent and pleasant.  I felt that if Mom could understand our dilemma, she would not feel very loved if we just gave up on the blood transfusions.

So over the course of 11 months, Mom’s body sustained TWELVE blood transfusions, without rejecting them.  I don’t believe that we prolonged her life with invasive treatment against her wishes.  I believe that we supported her until it was obvious that her time had come to pass to the next life – and she did so;  peacefully with her family at her side.  In the geriatric doctor’s words: “I didn’t think she would live two months, but now I have witnessed what the power of love can do.”

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Reply by JennJilks
11 Nov 2013, 7:58 PM
Defining quality of life is best left to individual families to choose.
This is why the conversations must be made well before it is too late. 
Most of my clients are ready to go. They have lost loved ones, their peers, friends, and many of my rural ladies have lost adult children.

It is interesting that Ontario's Dr. Donald Low demanded the right to end his life, saying he didn't want to be dependent upon others for issues like toileting, whilst many caregivers seek comfort in aiding a loved one.
Blood transfusions are a tricky topic, their efficacy is widely controversial.

You make the best decisions you can at the time. I'm happy for you, that you are happy with yours.
I was unable to say goodbye to my mother, as she denied her ill-health, sent me away, and desired to die on her couch, with my dumb brother there! sigh.
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Reply by J.D.
12 Nov 2013, 2:27 PM

Thank you for adding to the discussion.  As you indicate, the conversations have to be done well in advance, but some people don't realize that it can be complicated.  Hopefully the clients you are referring to, have thought it through and made their wishes clear to their families.  


Fortunately for us, our siblings had a brief disagreement and then came to a mutually agreeable decision.  It doesn't always turn out that way and the one who is appointed Power of Attorney for personal care can make decisions that the rest of the family don't believe in.


I hope you had many happy memories to console you in dealing with not being able to say goodbye to your Mother. 

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Reply by JennJilks
12 Nov 2013, 9:02 PM
I do, indeed, J.D.! I've been researching her family tree.
I think, every day, that I must call her and tell her or complain about something!
She was a strong woman. I honour that. She died the way she wanted, on her living room couch, without me there. She didn't think I could handle it. That was that. 
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Reply by Digger
13 Nov 2013, 3:59 PM
Hello J.D.

Advance Care Planning has its limits, as you discovered applying the 'rules' to your mother. I don't know of any document that is a guide to quality of life and non-invasive treatment - we go by our feelings and trust intuition (as you did), especailly if the dying one can no longer speak.

More and more I use the term Quality of Dying, a term that honors the journey. Death asks four questions  and all of them impact the quality of a death. They are:
1) Where do you want to die?
2) When do you want to die?
3) How do you want to die?
4) What are you most afraid of? 

If you have the courage to ask your loved one or relative these questions, before death does, then the quality of the dying experience changes for everyone involved. Dying people, in my experience, want to explore the journey. Why not help them?  I am surprised by the depth of discussion and the capacity to open to love these questions permit.
Dale 
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Reply by J.D.
13 Nov 2013, 4:06 PM

Wow!


Thank you for sharing.


If you don't mind, I will use your term "Quality of Dying" in future.

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Reply by Sue B
20 Dec 2013, 5:03 PM
Yes, I like that term, too, and will also use it.
I am getting to the point where I need to set up all the legal stuff and navigate the paper maze. As I said to my husband last night, I don't want him to have to do it all by himself (and by the way, he thanked me for that).
I can see how the quality of living or dying could be a really difficult thing to define. And the thing is that everyones definition is probably somewhat different. For instance, I will not have my adult kids cleaning my backside for me. Nope, just not happening! For other people that might be a non-issue or minimally important. It depends, I guess.
I'm glad this topic was brought up though, and I thank you for it. It's given me more things to think about as far as discussions with my family and medical team goes. 
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