End of care for problematic substance misuse – Who decides?

Caring for Dad during the end stages of his Alcoholism has to be one of the most traumatic experiences I had ever done through, even my brush with addiction couldn’t have prepared me or my sister for this journey we were about to embark on.

The more I write about Dad and his story, the more I research it, the more I realise the lack of end of life care or understanding for people with problematic substance misuse and their families is very limited and more needs to be done. Caring for Dad was counterintuitive, working in the treatment and recovery field and trying to accept Dads alcoholism or his inability to break free from it went against everything I believed in.

There were rare lucid moments during Dads alcoholism when he seemed to understand the gravity of the impact alcohol was having on his health. There were numerous times after being released from the hospital that he resolved that he wouldn’t drink again. He tried non-alcoholic drinks, but that didn’t last long. He tried sticking to drinking Lager, avoiding spirits or what he referred to then as being “the top shelf”, sadly his attempts didn’t last long.

He flatly refused even the suggestion of support groups, the mere thought of baring his soul in front of strangers was completely alien to him, after all, he was a “proud man and support groups were for whips” he would say. But his reluctance to accept help only fuelled his denial that he could “do this, sort this” on his own. Dads bloody-mindedness caused one of the biggest challenges not just for me and his family, but also for the professionals, who were responsible for his care.

We became acutely aware, particularly in the last 18 months of Dad’s life, that Dad had a serious physical dependency on alcohol as well as the psychological dependence, which made it more difficult to treat. But I was unaware that dads drinking had got to what’s (not) commonly known as End Stage Alcoholism. Looking back, I now realise that all the symptoms were there.

In the last 12 months, in particular, he started to experience many of the comorbidities that occur with end-stage alcoholism. He had been already diagnosed with Cirrhosis of the liver and as a result suffered regularly from Edema (Accumulation of fluid in the legs), Ascites – (Accumulation of fluid in the abdomen). Dad bruised easily and suffered from abnormal bleeding. He suffered terribly from Cellulitis which made his skin as thin as tissue paper and would frequently tear. He showed all the symptoms of Wernicke-Korsakoff syndrome, which develops due to a thiamine (vitamin B1) deficiency. And despite all of this, Dad continued to drink.

He’d slipped into a coma, several times, he had severe memory impairment and was often confused. His refusal to work with medical staff because “He knew better or he knew what was best for him” was at times both exhausting and infuriating, but at the time what could be more frustrating was dealing with the staff.

During each hospital admittance, we would have to go through the rigmarole of trying to explain Dads alcoholism to staff who had never had the pleasure of meeting him before. I felt for the nursing staff who didn’t understand the sometimes-outrageous behaviours and actions of a man who was being detoxed of a substance that was slowing killing him, but who would refuse their attempts at caring.

I would often wonder if they would have been inclined to treat Dad differently if he was in being treated for cancer, I strongly suspect they would have.

I always felt reassured and a sense of relief when dad had been placed on a ward, where staff had, had the pleasure of caring for him before, who understood his case history and could work with his sheer bloody-mindedness. Christ, we were on first-name terms with some staff. But there were other times when I could sometime see the frustration and disdain in some of the staff’s eyes, who seemed to resent treating someone whose health conditions were in their eyes “self-inflicted”.

Dad, his symptoms would change daily, one minute he was picking up the next he was deteriorating and tracking down the ward doctor was near on impossible. I would try and read his notes at the bottom of the bed to see if I could make any sense of what they’d written but it was futile none of it made any sense it was just gobbledygook. Towards the end, Dad hardly drank, but it was too late the damage was done and deep down he knew it too.

“People with problematic substance use (PSU) meet hostility, suspicion and frustration from a range of care professionals regularly. It prevents service access and can lead to mutual suspicion and mistrust. Professionals need to counter stigma and stereotyping around people with PSU to regain this trust” (2019) Good Practice Guidance, S. Galvani, Dr S Wright, Dr G Witham 

Every time he was released from hospital his physical and mental health only seemed to be deteriorating further. We no longer wondered “would Dad Die” and started thinking “Not if, but when?”. Which makes me contemplate the question “Could Dad have been offered palliative care sooner?”

Dad had carers, but their primary role was to tend to his bedsores that had developed after spending prolonged time in the hospital after contracting MRSA. More often than not, it would be the carers who would make the call for the ambulance, at the protest of Dad, because all he wanted to do, was die at home and to be left alone. But he wasn’t allowed that right.

Everyone is entitled to refuse healthcare treatment, however, the one exception to this rule is if the health professionals in charge of your care think you cannot make an informed and voluntary decision then that right is taken away. In the last few months of Dads life I’d stopped going to the hospital immediately after he’d been admitted, I would find out which wards he’d been admitted to and email them a bio about Dads condition and what to expect once he became compos mentis, only then would I go visit him. After coming around the staff would be met with a tirade of anger and frustration from Dad because all he wanted to do was say at home and die, but staff just deemed him as being difficult.

On the morning of Dads last day, we were concerned we’d found him on the floor his breathing was very laboured, but compos mentis enough pleading not to be admitted again. My sister worked for the NHS district nursing team at the time, she’s called a colleague around for some advice. When she arrived, dad was still adamant that he didn’t want admitting to hospital, “I want to be at home wi me babbis” those were his exact words, so she made a call to his local GP. The GP arrived and it transpired that his laboured breathing was because he’d contracted pneumonia AND because he’d heard Dads wishes himself, Dad was finally allowed to stay at home.

Immediately the doctor arranged for a Marie Curie Nurse to come around, which surprised me because I thought that they were just called for the end of life cancer patients. The Marie Curie Nurse was amazing, I remember feeling guilty that Dad was being treated for end of life because of his alcoholism when she could have been treating someone from cancer. But she explained that their role was to free nursing care to people with all terminal illnesses as well as support for family and friends.

During my researching for the book, I am learning more and more. I recently came across a research project, which ran for two years between 2016/18, funded by the Big Lottery the research programme was the first of its kind to explore current practice and service experience from a range of perspectives around the end of life care offered to people with problematic substance use, and their families, friends and carers.

As part of the project, they interviewed the patient, health care professionals and their loved ones. They have created a brilliant website https://endoflifecaresubstanceuse.com/ which is AMAZING

As I listened to the family’s stories, I immediately felt I wasn’t alone the guilt and shame and the denial that comes with addiction Listen here 

Responsibility and recrimination / Powerlessness and anger / Guilt and self-blame Listen Here 

After my own experience and hearing other people’s stories I am more determined to advocate and champion the support and care needs, not just for the patience (who happens to have a substance misuse problem, but for their family, loved ones and carers.

I have come across some really helpful sources of support so I thought I would share them with you

BEAD is a great source of information and support for anyone bereaved through drug or alcohol use

Marie Curie has some helpful information for families caring for someone at the end of life due to substance misuse.

I truly believe that as well as the patient all families have the right to be heard, assessed individually, given appropriate training and information to allow them to support their loved one safely, to be able to plan with ongoing support and monitoring from healthcare professionals.

#Familysupport #FamiliesMatter

So watch this space

I don’t write for financial reward or gain, I just want to help share my lived experience with others in the hope that it helps. And I just love to write, so if ya fancy getting the occasional email with the most up to date blogs from yours truly, please feel free to subscribe at the bottom of the main page.




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