How to make health decisions towards the end of life will depend on all sorts of things – not just how you have lived your life health-wise, but also circumstances at the time, the support you have around you, and the quality of your life at the time.
I recently received a story that didn’t make it into my upcoming book Before I Go: The Essential Guide to Creating A Good End of Life Plan and I thought it very important to share it with you. As told to me by Becky Lee Wale:
My mum was a very active 67 year old. After lots of ‘pains in the head’ and dizziness (not headaches she said), she was finally diagnosed with a brain tumour. After 4 weeks on steroids the operation was booked in and she was reassured a full recovery. She had signed the ‘Do Not Resuscitate’ form as she had always been clear to us (two daughters) that she never wanted to be a burden, and unable to do things for herself. Following the operation, within an hour there were complications. She had to spend weeks and weeks in two hospitals and eventually went to a rehabilitation care home. We knew this was absolutely killing her mind & soul but we were always told it would be a slow road, but that she would recover. The tumour turned out to be melanoma.
Once she was home, in a bed downstairs, with care-givers 3 times a day and myself and my sister assisting every day, she deteriorated even more. She actually said she hated waking up everyday realising she wasn’t dead. It was not the life for her. It was no life. It all became clear on one routine check to the hospital when we were told the melanoma cancer had spread and she had 3 months to live, and was I okay to drive her home. No other support was given. She became so ill (and I was 5 months pregnant so us both being sick!) that eventually she was given a bed in a hospice.
We went through Christmas and the doctors said she had to be moved again. Neither mum, nor us could bear the thought of going through another move for her when she didn’t have much time. My mum was brave and asked what was keeping her alive; the doctor said coming off the steroids would give her 5-7 days. She made the decision to come off them then and there, which would give her days to live (rather than maybe two months). She was asked three times to confirm she understood, and we also double-checked. The relief she showed knowing it would nearly be over was obvious and it was her decision. It was heart-breaking but we all knew it was the best path for her. I still feel guilt at not screaming & shouting for her to stay alive, but I also know it was more peaceful for her to have death come sooner rather than later. Following the birth of my baby daughter I eventually became a funeral celebrant and now immerse myself in the job and trying to get people to talk about death.
I hope my mum’s story is of some help. We were with her all day every day but also knew she would likely die when we were not with her in the night, and she did. Now, we make sure we often talk about mum (‘Nanny Sue’) to my two year old. And being a celebrant has helped in my grieving as I get to talk about her, and use my experience to help and advise others in terrible times. Rebecca Lee Wale, England
Fortunately, Becky’s Mum was able to speak for herself, and make her own health decisions. Not everyone is always in this position, though. Imagine how it would have been if this was your Mum, and she was not able to speak for herself.
Imagine if you were her healthcare power of attorney (legally appointed to be your Mum’s power of attorney, and make decisions on her behalf), and had to make the decision re coming off steroids for her.
That kind of decision is made more difficult when there is no Advance Directive (Living Will/Advance Decision/Advance Healthcare Decision) in place (a signed and witnessed document, made when you are in full health, and stating the conditions under which you no longer want to receive life-sustaining treatment).
PLEASE THINK ABOUT THIS NOW, FOR YOURSELF.
An Advance Directive makes it easier to make these terribly hard decisions, for both you, the rest of the family, and the doctors. Without written evidence about how the patient feels, it can be almost impossible to take such a huge decision.
As always Jane, the advise that you shave is vitally important for each and every one of us to take responsibility
for our own wishes to be made clear with an advance directive. Thank you for sharing this very important story.
Just a couple of days the same scenario happened to the mother of a friend of mine. However she was unable to make the decision and there was no Advance Directive or Power of Attorney in place.
Her family were at the hospital and she had had a fall. I don’t know what the medical situation was. The doctors wanted her to have a hip operation but the family didn’t. The doctors said quite clearly that they could overrule the family as there was no AD or LPA. My friend went home, living hundreds of miles away. She was strongly against the operation and felt it would be a death sentence. The other children changed their minds when she was gone and the mother had the operation and died. Sad.
Thank you Yatro – it is so important for people to hear this, I don’t think many understand that they have no authority if the right documents are not in place. I’m so sorry that this was the outcome.
Good Morning, Yatro,
This is always a difficult decision, no doubt as we can never predict outcomes. However, Since it appears the mother was at the hospital when “she had had a fall” as you stated. The hospital would have been liable and since we do not know her medical situation as you also stated above we can not determine necessity.
I have worked as a chaplain for 4 years and I see these predicaments often. Often, I have found that families in the West have no time to take care of their loved ones and prefer to put them in a nursing facility rather than alter or disturb their lives to take care for a loved one. This is far more the case in a “throw away culture”.
Personally, I agree with a DNR and believe we should have one in place when we are faced with surgery or specific
illness however, families do not usually come together as a unit to make these decisions until they are faced with an emergency crisis.
Thanks Sandra for your comments there. You are so right – because we in the West don’t usually think about any of this until we are forced to (by dint of someone close to us becoming seriously ill) we then need to make decisions under pressure. Never a good idea. So the more education, the better!
I would like more information please. Do you need power of Attorney and an advanced directive.
What do you think to funeral plans where you pay monthly?
Hi Suzanne, it depends on what country you are based in. Check out the Advance Directive Masterclass that is happening on Monday 11th Dec 2017: http://beforeigosolutions.com/what-we-offer/big-masterclass/advance-directive-masterclass/
You can ask as many questions as you like there, and I will be taking people through a process to help them get their Advance Directives done.
Funeral plans where you pay monthly can be okay, it all depends on your circumstances. Join my Facebook group and you can ask and get answers to your questions there. It is https://www.facebook.com/groups/beforeIgo/