A few days ago my mum attended a review of my grandma’s dementia treatment plan at the hospital in which she is currently sectioned. Such reviews are not unusual, they take place every two weeks and have provided us with a sense of comfort that grandma is being looked after by people who genuinely care for her. However, after this last review there little comfort to be had due to the subject matter of the meeting: whether or not we wanted a ‘DNACPR’ order (‘Do Not Attempt Cardio Pulmonary Resuscitation’) to be placed on grandma’s medical record.
This following is an explanation of a DNACPR (hereafter abbreviated to ‘DNR’) from the National Health Service for England’s website. I have emboldened the latter part of this quote because it highlights the unique situation of a relative having to make the decision regarding a DNR because the subject of the order doesn’t have the “capacity” to do it themselves:
Everyone has the right to refuse CPR if they wish. You can make it clear to your medical team that you do not want to have CPR if you stop breathing or your heart stops beating. This is known as a do not attempt cardiopulmonary resuscitation (DNACPR) decision, or DNACPR order. Once a DNACPR decision is made, it’s put in your medical records, usually on a special form that health professionals will recognise. […] If you do not have the capacity to decide about CPR when a decision needs to be made and you have not made an advance decision to refuse treatment, the healthcare team may consult with your next of kin about what they know of your wishes to make a decision in your best interests.
From the moment that my mum came back from the review I could see that she wasn’t herself, she was quieter than usual, her gentle face expressed sadness — eyes narrow, smile gone, brow furrowed.
Eventually, I found out about the situation with my grandma and the DNR. Once my mum had uttered those words — do not resuscitate — I found that I could no longer hear my mum’s words, I disappeared into reflection.
It’s not like I hadn’t heard of DNR’s before, or of relatives having to decide whether or not to put one in place, but when it becomes personal and you are the one making the decision, it’s very different.
They were asking my mum, the woman who had poured her heart and soul into caring for my grandma when no-one else would, whether it was OK to let her die should she require resuscitation. I felt that I had to somehow relieve my mum of this terrible responsibility but I didn’t know how to. It’s not like I had an answer to the question that had been asked of her, I was at a loss.
The doctors told my mum that the trauma of CPR might be worse for grandma than allowing her to just pass away. That’s a big ‘just’. How can anyone be sure of the degree of pain that comes with death?
I felt like me and my mum had been put in a double-bind, where there was no right answer to the question that these doctors had asked of us.
Irrespective of how much suffering a DNR can help someone to avoid, I just cannot shake the sense that putting one in place is disturbingly similar to signing your relative’s death warrant. It feels like passive-murder, in the way that passive-aggression hides true aggression under a veil of socially accepted etiquette, so too it seems that this DNR order is a facade under which more heinous motivations can hide. I know that the motivations of the healthcare professionals who suggest such things are not heinous, they are truly trying to do their best for their patient, but I cannot deny that this is how it feels when you are the one making the decision and it concerns the life of relative that you love dearly.
My mum explained to me how the nurses had told her that when you attempt to resuscitate someone who is as physically frail as my grandma it was likely that their ribs or breast bone might break in the process and that these injuries would take a long time to heal (if they ever did).
I can’t bear to imagine my grandma lying prostrate in a hospital bed crippled by the pain of broken ribs, pain that my gran would have to deal with from the vantage of an already confused and psychologically tortured mind caused by her dementia. No doubt she would be unable to understand why her ribs were broken, or what the words ‘ribs’ and ‘broken’ even meant because of her dementia. It would just be pain and the question ‘why?’ Why had anyone let this happen to her — I would hate to have to try and answer that question.
The nurse told us that another potential consequence of administering CPR to someone like my grandma was that it often resulted in them spending a considerable amount of time on a ventilator for breathing support, due to their breathing passages and/or lungs being damaged in the process of CPR.
My grandma can barely think for herself right now, the idea of her not being able to breathe for herself either doesn’t bear thinking about. I wonder whether not allowing the DNR to be put in place is tantamount to me facilitating the possibility of such an inhumane situation occurring. Inhumane seems to be the appropriate word because if my grandma was left without the ability to think or breathe, how much of her humanity would be left exactly?
Nearly every time that me or my mum visit my grandma she will cry for a long period, she is inconsolable when she is like this. Nothing that me or my mum say or do has any effect at assuaging her pain. I grasp a hold of the hope that a spiritual love forged deep within my heart might be able to reach out and touch her, to let her know in a non-verbal sense that another human being is there for her who cares for her deeply. But I can only hope for such things, how can I really know the effect that my heart’s yearnings can have on someone who seems to need so much more than that.
If my grandma isn’t crying she is very quiet, frequently drifting off into sleep as you talk to her. Has she given up trying to communicate with other people because what we say makes very little sense to her? Quite possibly. The nurses tell me and my mum that they find it equally hard to talk to her, some chocolate or a biscuit might momentarily catch her attention, but once the cookies are gone and the crumbs have been wiped away, my grandma goes back into her shell. I have heard it said by some people that life, when you are retired, is reducible to filling in the gaps between meal times, but at least with such a depressing analogy for someone who has a reasonably healthy mind they can find worthwhile activities to fill these gaps and in a way that adds vitality to their life — my recently retired mum got a dog and looking after this little animal has given her life a renewed sense of purpose. However, for my grandma who can’t look after herself, there’s no chance of her looking after another living creature. My grandma, it seems, is left to just dwell aimlessly and confused in the empty abysses of time in-between meals. What kind of life is this?
I often wonder how much joy my grandma has in her life now, I hope and pray that there are at least moments in her days when happiness replaces suffering and smiles replace tears. But each time I visit her I feel that this hope is diminishing as her confusion increases and her dementia worsens. Admittedly, this is from an outside perspective looking in, as for what is truly going on deep inside my grandma’s mind — it’s impossible to know. It’s becoming increasingly likely however that there isn’t much of anything going on with my grandma that can’t be gleaned from an external assessment of her character, the rate at which her brain is deteriorating is putting pay to the chance that there is anything deeper going on. As sad as this might sound, it is the truth that I have to accept.
I wonder how ethical it is for me to try my utmost to prolong my grandma’s life at any opportunity, who does that serve — me or her? Is she going to be thankful for my efforts to give her another few months of this existence that she finds herself burdened with? Or maybe it would just please me that I have avoided the weight of responsibility that comes with making a decision regarding the length of a loved one’s life?
There is no universally correct answer to the question of whether or not your relative should have a DNR in place. This article is not an argument for or against DNR’s, it’s a description of the conflicted sadness that comes from trying to make a decision regarding one. It is for this reason that I have made a point of not saying exactly what decision me and my mum have come to regarding my grandma’s DNR.
The thoughts that I have expressed regarding DNR’s are influenced by the unique situation of my relative and that’s the way it should be for anyone who is making this decision. Whilst outside support is helpful, only you can know what would be the most loving way to respond to a DNR request. And I think that this is the key, that any response should seek to use love as the deciding factor, medical studies and detached moral arguments can only help you so much, these things don’t take into account the love that you have for your relative, but you can take this into account when you make the decision.
If anything, hopefully through expressing some of the conflict that a DNR request causes the relative tasked with the responsibility of dealing with it, I have managed to give other people who find themselves in a similar situation something that lets them know they are not alone in their angst and confusion as to how to respond. Such a reaction is to be expected considering the potentially far-reaching implications of the decision you are trying to make. Have faith, that with love as your guiding light, you will make the decision that is best for both you and your relative.
Thanks For Reading,