The story of the unguarded piece of paper with the red border

There was once an elderly lady who had lived for over 90 years, she was palliative and was going to stay in a home, a care home. She was only going for a short time while her family travelled to another city to go to a wedding. The lady was too ill to travel to go to the wedding and she told her family to go without her, she wanted them to celebrate the wedding and to bring photographs back to show her. She told her family she would be ok for the few days while they went away. Because the lady was poorly and she was palliative doctors had already talked with her about Cardiopulmonary Resuscitation (CPR) and after discussion the lady was happy that a DNACPR was in place, the A4 size piece of paper with a solid red border told medical staff that in the event that the lady needed CPR she did not want it, she did not want to be resuscitated, the lady knew that she was palliative, she wanted the right to say what treatment she had and wanted the right to chose how she died, she made a decision that her final moments would not be spent with medical staff trying to resuscitate her, she knew that the CPR might cause injury and she had decided that she wanted to be allowed to die and the doctors agreed. The piece of paper went everywhere with the lady, because she was frail and had heart problems it was important that the piece of paper went with her so there was no mistake about her wish not to be resuscitated. The document was a legal one and had to be respected by everyone. The DNACPR had a red border so it stood out from other pieces of white paper.

When the lady went to the care home for her short stay her family carefully packed the DNACPR with her belongings because they knew how important it was and they knew it was crucial that the document stayed with the lady during the journey and once she arrived at the home, just in case.

The family went to the wedding, after they had been gone for a day the lady became poorly, she had a heart attack. The staff at the home were good and caring and kind and they called an ambulance, when the paramedics arrived they asked about the lady and her wishes regarding treatment and about DNACPR.

The staff at the home were always very busy, they all worked hard and a lot of the time there weren’t quite enough staff to do all of the work that was needed and sometimes jobs were put on a “to do” list but by the end of the shift the jobs didn’t always get done and not everyone could remember all of the jobs for all of the people they cared for every day, they were just ordinary human people who sometimes forgot things. When the lady arrived at the home the DNACPR was given to the staff to put in the lady’s file so that it was safe and wasn’t forgotten about and so everyone knew where it was “just in case”. Something went wrong, maybe the phone rang at the exact moment of the piece of paper being given to the staff or maybe someone came to the door and caused a distraction or maybe there was an emergency to deal with and the piece of paper with the red border was put on the desk for just a moment and in the confusion and the busyness was then forgotten about, the DNACPR didn’t go into the file, no one knows why, the DNACPR vanished, no one knows where it went but it didn’t go into the lady’s file and so when she had a heart attack and the paramedics came and asked about the DNACPR no one could find it to show to the paramedics and so the paramedics had no legal reason to not carry out CPR, there was no evidence to stop the CPR and so the paramedics did their best and tried to save the lady’s life. The lady couldn’t tell them not to and the staff couldn’t find the DNACPR to show the paramedics and so for fifteen minutes the paramedics tried to save the lady’s life, even though that’s not what the lady wanted. The lady couldn’t be saved, she died.

Sometimes for the want of a piece of paper it goes wrong, no one did a deliberately bad or cruel thing, no one lost the form on purpose, everyone did their utmost and everyone wanted it to be the right thing.

I think about the Dylan Thomas poem “The hand that signed the paper” and about the line “hands have no tears to flow”, it was a hand that put down the DNACPR, it was a hand that moved it, hands frantically searching for the DNACPR, hands devoid of emotion. I think about the unguarded piece of paper which will probably turn up in a drawer or the wrong file or just under a pile of other paperwork, the mythical, magical, illusive and powerful piece of paper with the red border.

Eulogy

Not everyone grows up to be an astronaut,
Not everyone was born to be a king,
Not everyone can be Freddie Mercu-ry,
But everyone can raise their glass and sing.
Well I haven’t always been a perfect person,
I haven’t done what mum and dad had dreamed,
But on the day I die, I’ll say at least I fucking tried.
That’s the only eulogy I need,
Thats the only eulogy I need.

 

Frank Turner

From the 2011 album “England Keep my Bones”

The grief of leaving everyone and everything

In Felicity Warner’s The Soul Midwives Handbook she describes an exercise used by spiritual care trainer and author Christine Longaker which is designed to try to show how it feels to be in the position of leaving life behind, of being on the threshold of death and trying to make the psychological and emotional adjustment necessary. The exercise looks at the enormity of leaving everyone and everything. We have all experienced loss and can recall the emotions and thought processes which accompany a loss whether it be loss of things or people but the amplification of leaving everything and everyone is so intense that we seldom think about it for fear it will overwhelm us. Just saying the words “leaving everyone and everything” has an intensity to it, when I say it the words slow down, theres an emphasis on the final syllable and I feel something in me, some part of me recoils when I say it, its not just a thought, its a feeling and its a feeling I don’t like. In saying it my mind flits across names of people I love and the things Im surrounded by here in this room and I can only go so far into the thought and I retreat again, it feels a little like falling, like the image of Lewis Carroll’s Alice falling down the rabbit hole with cupboards and tables floating past on the way down only Im falling past the faces of people I care about and the kitsch clutter I’ve surrounded myself with and freeze-frame style shots of scenes from my life, I want to grab onto something to stop the fall because I suspect at the end theres just nothing…just nothing at all but I cant picture “just nothing”, I can’t picture the absence of everything.

I worked with a woman several years ago who fought against her death, she raged against it and her sense of injustice about her impending death was contagious, I would find myself being outraged about the unfairness of a world in which a mother, still relatively young could die. I was angry and appalled on her behalf but I didn’t know who to direct my anger at, I just had a sense of it not being “fair”, of it not being “right”. She didn’t want to leave everyone and everything, to leave hope, to leave the future, to leave the sounds and smells and taste and touch of things and of people but there was no way to convey the enormity of that, sometimes it can only be conveyed by sounds, by screams and by moans which aren’t recognisably human but at the same time the audience recognises the depth of the anguish transmitted.

Leonardo da Vinci said “While I thought I was learning how to live I have been learning how to die“, we are all moving towards death everyday, we forget that, we push it out of our minds, we are all learning how to die without most of us actually acknowledging it and our lamentations will not hold death back.

 

We are all trapped by a singular fate.

Alone with Everybody 

Charles Bukowski

The flesh covers the bone
and they put a mind
in there and
sometimes a soul,
and the women break
vases against the walls
and the men drink too
much
and nobody finds the
one
but keep
looking
crawling in and out
of beds.
flesh covers
the bone and the
flesh searches
for more than
flesh.

there’s no chance
at all:
we are all trapped
by a singular
fate.

nobody ever finds
the one.

the city dumps fill
the junkyards fill
the madhouses fill
the hospitals fill
the graveyards fill

nothing else
fills.

 

Who does this work?

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Every day I’m involved with people who are receiving end of life care, some of them talk about the issues they are facing and some don’t. I’ve always thought it crucial that in order to be receptive to other people talking about their “stuff” I have an understanding of my stuff and how I got to where I am. I don’t force the deep, existential discussion on people but I don’t shy away from it when it comes up and I don’t change the subject to something safe and socially acceptable like the weather or Brexit.

The Canadian psychologist Jordan Peterson, in talking about people who work in EOL care, asked the question, “what is it about these people that they can do this work?”

I don’t think there’s anything special about me in wanting to work with people who are dying, there are lots of fields of work I couldn’t work in and would at best shy away from and at worst run a mile from. My route into this work has not been direct and deliberate and whilst I’ve worked in social care for the majority of my working life I only “discovered” palliative care a few years ago during my work in a residential service. Throughout my career I’ve veered towards working with the groups of people who are marginalised or whose situations challenge people leaving them feeling uncomfortable, currently, in our society, the dying tend to fall into this group and there is something about the outsider or perhaps our social pariah’s that draws me in.

It would be hard to fully articulate how I feel about working with people who are dying but I have a sense of my being driven by compassion, and a sense of unity with people, a sense of the commonality of the experience of death, its one we will all go through but many of us live in a state of denial or avoidance about our own impending deaths.

In some ways I’m a spiritual person have a spiritual belief but not one which adheres to an organised religious structure. My spiritual beliefs often provide reassurance when I am faced with challenges and serve to underpin some of my day to day living, these beliefs interact with my political views about equality and social justice and drive my day to day interactions in my work but Im not a moral crusader, nor am I from the “smells and bells” school of spirituality, not that I think theres anything wrong with that but its not my bag. I think Im fairly average and run of the mill.

Some of my beliefs about life and death have been shaped by my having read Buddhist and Hindu texts and read texts on wider spirituality as part of my own journey in trying to answer the big questions of “why am I here?” or “what’s it all about?”. I can try to process this belief through “thinking” but this belief system resonates with me somewhere else within my being, it’s not a thing I can fully articulate, it is a thing I “know” in a deeper and more core aspect of who I am. This might be the part of me described as my soul, it’s the part my friend calls my “knower”.

When I am reduced to my most basic “being” I am energy and I believe I came from and will return to energy. There is no reward and punishment system and no afterlife in the sense of that described by more mainstream religions and so I approach my work and the people I encounter from this position. I don’t want to say this is my calling because that word has too many connotations which don’t resonate with me, I just feel right about this work and I go about it mostly in a quiet way.

Like everyone I have experienced loss and grief. My dad died when I was 14 years old, his death was sudden and accidental and not what would be described as a “good death”. My dad was young when he died and within weeks of his death my grandfather died. The two men who dominated our world were gone within in a short period of time. There seemed to be a sense of acceptance about my grandfathers death, he was in his 70s and died peacefully in his sleep one new years eve and my mother was devastated. My grandmother wore black for a year to externalise her mourning but my father was never spoken of. In hindsight I understand that they weren’t equipped to deal with both deaths and so poured their grief into the loss which was palatable to the rest of the world. The death of a 35 year old man with four young children makes people uncomfortable, the death of a 75 year old man reflects the order of things and people are comfortable with it. There are no implored “whys” about my grandfathers death. There was no fear or confusion about his death, my grandfather had a “good death”, my father didn’t.

My experiences of death, loss and grief have undoubtedly shaped my perspective and my work. My experiences of not talking about death and not fully grieving have possibly created in me a desire to be open about death and about the emotional experiences of the process of life but I don’t have a sense of trying to redress the imbalance or fix myself through my work. Daily in my work I talk about death and I am mindful of the fact that this isn’t readily transferrable to my personal life, many of those around me don’t want to talk about death whether mine, their own or in general and so I try to be sensitive to the feelings of others. I still grieve when people I’m working with die, some cases touch me deeply and I still experience shock and distress at the news of some deaths despite the fact that they were fully expected. I don’t claim to be any better equipped to deal with deaths in my personal life as a result of my work and I don’t have a “how to” guide on dealing with dying and death but I am happy to hear you talk about it without shifting the subject to the weather or the football.

Death and Dying in the North of England

 

No one here gets out alive – Jim Morrison

 

I am employed in end of life work in the North of England and this blog is an outlet for my reflections on my experiences and encounters with people who are in the final months, weeks and days of life. I certainly don’t claim to be an expert in end of life work and every day I learn something new from people I work with so I am not aiming to teach anyone anything about death and dying but I do understand that the subject of death is still off limits for day to day discussion for most people and I’ve seen from my work that this isn’t always beneficial, not only for the person who is dying but for the friends and family who remain.

I’m not on a crusade to harangue people into talking about death but I do believe we ought to have the freedom to discuss these issues should we chose to do so. So much of our experience of life is spent denying or running from death, whilst there is no benefit to repeatedly focusing on the morbid aspects of our existence there is benefit to remembering that we will all die eventually.

I can only talk about death and dying in the North of England because that’s where I live and work, the North of England is a beautiful and inspiring place to be and my work brings me into contact with some wonderful people but I also work with people who are living in terrible circumstances whether due to financial poverty or social, emotional and psychological poverty, in the course of a week I often experience the best and worst of human relationships. I don’t have any answers or “how to” lists, I just have a very genuine commitment to supporting people at the end of life and supporting people who might want to ponder life and death…I’m generally banned from talking about this stuff in polite company because it can be a bit of a buzz crusher on a night out and so this blog is the electronic equivalent of therapy.