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A good death? End of life care and what happens to those left behind.

This is something that I’ve wanted to write about for quite a long time but I’ve struggled with it as I had a very traumatic experience in trying and failing to help my mother have a good death and didn’t just want to write negatively about what happened to her and me during that time.

Now I think is a good time as I feel able to reflect and pull out some crucial learning from that experience without being overwhelmed by the emotions of loss and failure that have haunted me for the last 18 years.

As some of you know currently I’m a coproduction group member of the Coalition for Collaborative Care and am often involved with different organisations keeping conversations grounded in reality by using my own personal experience, as a person with Long Term Conditions, to illustrate what’s needed for good person centred care.

Back in 1997 I had no expectations or knowledge of person centred care I just hoped that in times of dire medical need people would pull together to do their best.

My mum had first been diagnosed with bowel cancer in 1992 and had been successfully operated on with a cautious prognosis of some good years to come but maybe not too many. In fact she had about 12 months of a reasonable quality of life and then life became punctuated by emergency admissions with blockages and complications, further operations and finally in 1997 a terminal diagnosis with a few months at best to live.

My mother’s care in 1992 had been extremely good in hospital with good pain management, staff on the ward who communicated well with her, and with the immediate family. With hindsight aftercare was a bit patchy, communication between hospital and primary care was not great but OK.

As time went on there were big changes at the hospital, which was being downgraded, and it was evident that staff morale was on the floor and channels of communication were poor or non-existent. I spent many journeys up and down the M6 from Manchester to the West Midlands during that time with frustration and fear growing each time as my mother appeared to have poor treatment, my father’s anxieties were growing too and information was very hard to get.

As often happens in life a few difficult events all came at the same time and in April 1997 I had to have a hysterectomy and just as I was 2 days out of hospital my mum had another acute episode, was rushed to hospital and declared terminal with an anticipated 4-6 months to live.

Of course I wasn’t supposed to drive for 6 weeks but had a good friend who drove me down to the Midlands and left me there for the week so I could visit mum and support Dad. I had never seen my mum look so ill, be in so much pain and for the first time in her life appear not to want to live any more.

After that week the friend picked me up and took me back home and I had a hospital check up and then drove myself back down to the Midlands with a range of clothes which included something suitable to wear at a funeral.

The cancer had spread and mum also had extensive secondary bone cancer and she was in agony, she couldn’t swallow anything solid and could just sip liquid in between vomiting frequently.

We were told she was going to be discharged to home to die, as that is what they did. We had a very stormy pre-discharge meeting where I asked what other options were there as clearly my mum needed clinical care as her medication was being changed daily, wasn’t stable and pain levels were rising. She couldn’t get out of bed on her own, and I reminded them that I was recovering from a hysterectomy and wasn’t supposed to lift anything heavy.

I was told a hospice was not an option even though I knew about ones in the area and when I asked what support we could expect at home I was told ‘it will evolve over time my dear and your mum could go to the day hospice to have her hair done’.

At this point I nearly lost my cool completely and I asked the sister in question had she even seen my mum as if she had she would know that even getting out of bed would be a struggle never mind go on an outing. I heard myself tell her that she better define what ‘evolve’ meant in hours and actual support because until that happened my mum was not coming home.

On our way home from the hospital that same day my dad asked me if I thought mum was gong to live for the number of months we were being told and I had to say no and that I’d be amazed if she lived 3 weeks longer. Dad was perplexed as to why the nurses were talking months and days out etc. when mum was lying in a bed in hospital, vomiting and in agony and unable to eat.

I’ll spare you the rest of the gruesome details that were the last days of my mum’s life but suffice it to say that she was discharged home to die and in those remaining 10 days 27 different professional people came through the bungalow.

They were all well meaning but had no idea of what anyone else was doing so I had to coordinate them. The wrong medication was sent out from the hospital so I had to act swiftly to get the pump driver refitted- it had been taken off before she left hospital and tablets sent out with her, which she couldn’t swallow.

None of her symptoms were managed well, she vomited constantly and was in agony if moved even slightly which we had to do to get her to the toilet. Very soon we couldn’t move her any more and she had to be catheterised.

Dad and I stayed awake each night nursing mum and listening to her tortured breathing and we were both becoming more and more exhausted with the physical and emotional stress of everything being an uphill battle.

Mum finally died at 1.00 am a week and a half after being discharged from hospital and to say I was distraught was an understatement.

Obviously there was grief as I’d lost my much loved mum but I was also relieved she was out of pain and suffering and at the same time appalled I was relieved and that I had failed to ensure she had a good death.

As time went on I fell into a deep depression and ended up being diagnosed with Post Traumatic Stress Disorder and Severe Clinical depression. I needed treatment and support for 12 years from my GP, Psychology and Psychiatry and looking back lost a decade of my life as I battled to hold down my job and weather the continuous mental ill health episodes that occurred.

My father suffered too but reckoned he coped through taking up smoking again. He died of a massive stroke 8 years after my mum died and I was probably a force to be reckoned with when I got to the hospital with him as I was determined that he would get good care but happily I didn’t have to fight as the staff in a different hospital in the North of England couldn’t have been more caring towards him or me and family.

I’ve never slept through the night since my mum died and still do have to manage recurring depressive episodes but can do this now with strategies I’ve learned and largely without medication.

Unfortunately I also know that today in 2016 nearly 19 years after my mother died there is still quite a lot of variation in support and care for the terminally ill which often means people find themselves battling for their loved ones to get the support they need for a good death.

Marie Curie understand that death is more than a physical process for the person who is dying and you can read more about this here.

https://www.mariecurie.org.uk/help/being-there/end-of-life-preparation/end-of-life-experiences

A recent report ‘On the brink- the future of end of life care’ compiled and published by the End of Life Coalition http://endoflifecampaign.org/wp-content/uploads/2016/02/End-of-Life-Report-WEB.pdf understands the difficulties many people still face with lack of choice and ‘variable quality of care available to dying people and their families and carers.’

Just as death is one of life’s certainties it is also true that you can only get one shot at it and if it doesn’t go well then there is no second chance.

Lack of a good death has a profound effect on family members/carers left behind the negative effects of which can last their lifetimes and in turn generate more medical care and finance spent by the NHS.

So in providing high quality support and care for end of life the positive effects will be felt by the patient and their families too and NHS finances.

When I can see that happening maybe the haunting and upsetting memories I still carry in my head will start to recede into the darkness?

sun going down horizon