Refusing kidney dialysis – a daughter’s reflections

Julie Morton, 23^rd November 2020

When I asked for access to observe a hearing in the Court of Protection, I had no idea how close to home the key issue would turn out to be.  

The case I heard (COP 13673437) was in court for the first time and was listed for 2pm on 12 November 2020 before Mrs Justice Theis sitting as a Tier 3 judge of the Court of Protection in the Royal Courts of Justice, and held remotely via MS Teams. It actually started at 14.40 because the lawyers were reading documents that had been submitted late.

The person at the centre of the case, AL, has end stage kidney disease.  He needs haemodialysis three times a week to keep him alive. At the moment, he’s in hospital and accepting regular dialysis (at a “sub-optimal” level of twice a week), and is fit for discharge.

When he’s discharged from hospital and goes back home, he’ll probably refuse to come back in for dialysis.  This could mean that he dies.

My father died just over a year ago (in his mid 70s) because he, too, refused dialysis.  His situation was different because he didn’t have kidney disease and there weren’t any problems with his kidneys until he was admitted to hospital after a fall due to a small bleed on his brain and he died six days later.  Before the fall he was pretty healthy.  After the fall his kidneys just didn’t work and his body filled with fluid – he visibly looked like he’d been pumped up with fluid the last time I saw him. 

My father had full capacity throughout his stay in hospital.  A nurse discussed dialysis with him the night he died, and we were told after his death that my father had said he didn’t want any treatment or dialysis for his kidney disease as he didn’t want to be “strapped to a machine”.  This was his choice but, unfortunately, I and other family members weren’t part of that discussion and couldn’t give our views or reassurance regarding this. My father passed away that night on the ward on his own.

It was his right to make that decision but I wish I’d had a conversation with him about it.  I look back now at all the missed opportunities and kick myself for all the times I could have talked with him about his wishes about treatment and didn’t. 

There was a lovely time about six months before his fall, when he came round to spend time with me and my brother and brought a whole lot of photographs of us as children and letters we’d written to him 30 or 40 years ago.  That was a time for sharing feelings and memories and I wish I’d seized the opportunity to talk with him about the future then.  

And the day he went into hospital after the fall, I went to visit and it was just the two of us, and a conversation about his wishes is one of the things I wish I’d done, and didn’t.  I think I didn’t want to frighten him – and although I knew in my heart it wasn’t looking good, I never thought it would come to him passing away. The last thing he said to me was, when I said, “I’ll come and see you soon Dad”, he said, “Don’t forget!” – and I never saw him again.  And now I’m driving around with his ashes in the car and I don’t know what he would want doing with them – and I could have asked him but I didn’t take the opportunity to ask about that  either.   I just look back and think, “why didn’t we have those conversations?”.  Of course,  it’s easy to say that in hindsight.

I wonder what AL understands about his kidney problems and the way the treatment makes him feel? I’m not sure what actually happens but “wired up to a machine” doesn’t sound pleasant at all.

I hope AL’s family have some understanding of why AL is refusing treatment when he’s living in the community.  I was surprised to hear that his family would not be attending the hearing and that they asked to be informed of the judge’s decisions afterwards and that their interest in this had “tapered off”.  Maybe they find the court process daunting? Maybe there will be more information at the next hearing to establish what the family think is best for AL – and I hope we will hear from AI himself.

The applicant Hospital Foundation Trust (represented by Rhys Hadden) was applying for a declaration that it was in AL’s best interests to be discharged from hospital and to be treated reactively in the community and not under any compulsion or constraint.  It seems that this would mean an ambulance turning up at AL’s supported living accommodation three times a week to take him to his dialysis appointments but, as Rhys Hadden put it: “Nobody would restrain him, or coerce him into the ambulance. He’d be invited to attend for dialysis and it would, in effect, be up to him”.  The Trust was hoping for a final order at this hearing, and had an expert witness (a consultant nephrologist) in court, as well as two people involved in AL’s residential care.  AL was represented by Sarah Simcock via the Official Solicitor.  

AL lives in supported living accommodation where he is supported to manage his paranoid schizophrenia and recurrent depression. His capacity to consent to (and to refuse) haemodialysis has been assessed and he’s been deemed to lack capacity “due to fixed and delusional beliefs”.  This means that a best interests decision needs to be made about whether he should be compelled to receive dialysis against his wishes by means of physical, mechanical or chemical restraint.  There have been many occasions on which he’s failed to attend appointments and he’s become ill as a consequence and it’s led to a number of hospital admissions.  

The proposal to make a final order was resisted by AL’s counsel.  She asked for more time to get a better sense of AL’s wishes and feelings.  A previous (remote) interview with AL had not gone well, and it was hoped to have a face-to-face meeting with him to try to understand why he was refusing treatment when back in the community setting.   She said:

“The Official Solicitor has no understanding why AL is passively accepting dialysis in hospital but refuses to attend hospital when he’s back in the community.   He’s compliant with his treatment (albeit at a suboptimal level of two times a week) – he doesn’t resist. But when in the community that compliance falls away.  In order to understand that, we consider that a face-to-face meeting should be arranged – given that the consequences of his continued refusal to accept dialysis once he is back in the community could be his death.”

She had also only just received the discharge and transition plan and hadn’t had an opportunity to discuss it with her instructing solicitor. And she wondered whether, if AL were to live in a place where nursing care was available (as it is not in his current placement),  he might be willing to accept dialysis – since he would not be required to travel to receive it.  She said:

“We do note AL is medically fit for discharge and it’s not in his best interests to remain indefinitely on the hospital ward where he currently is, but we simply want to make sure that all available options have been explored fully, given the serious consequences likely to result if the Trust’s proposed plan is implemented.”

She also made the point that, since he is likely to become unwell and die if allowed to choose for himself whether or not to have dialysis, a care plan needs to be developed to cover that eventuality (i.e., his death in the residential care facility).

The judge decided not to make a final order at this hearing. I was relieved that the decision was delayed to obtain a better understanding of AL’s wishes and feelings.  Especially as nobody seems to have a clear idea about why he is compliant with the treatment when he’s an inpatient but then refuses to leave his supported living home and go into hospital for treatment when he’s back in the community.

In regards to finding a care facility that would be able to give the treatments on site, I have never heard of this in my social work career of 12 years either, although I haven’t had first-hand professional experience of people needing dialysis as there is a specific social work team within the hospital in Sheffield where I work for people with kidney problems. 

I fully understand the implications of AL being detained in hospital when he is fit for discharge but fully agree with the decision to delay this slightly until further information is gathered regarding his wishes and feelings. AL is only a young man in his 40’s and has had really debilitating health issues by the sound of it. It would be a real shame if he is left to die in the supported living home without fully exploring what other options could be available for him.

Since Dad’s death I’ve felt really anxious about death and dying and really worry about it.  I’m in my fifties and since what happened to Dad, I have decided to get my Lasting Powers of Attorney sorted.  I have all the documents for both Health and Welfare Power of Attorney and for Finance and Property Power of Attorney.  Both forms are filled in and ready to sign, with my son and daughter (in their twenties) as my decision-makers.  But for the last eight months they’ve been sitting in a box in my living room and I can’t bring myself to sign them and get the witness signature and everything.  It just makes me feel too anxious – as though I am going to die.  I can’t seem to handle it, even though it’s a process I initiated and I know I would have some peace from knowing that I’d sorted it out.

I do believe it’s important to talk with family and friends about what you would want if you ever couldn’t make your own decisions about medical treatments and other aspects of your health and social care – because you never know when something might happen.  And if you would like your family to have a decision-making role, appointing them as Power of Attorney is essential – because “next of kin” do not have any decision-making rights for adults who lack capacity.  You could also make an advance decision and advance statement. Check out the charity Compassion in Dying webpage which explains all the options for preparing for loss of capacity, and they also have an information line to provide support. 

I hope to attend the next hearing to find out what decision the court will make for AL.  It’s listed for one-hour at 2pm on Monday 23^rd November 2020.

Julie Morton is has worked as a Social Worker for 12 years and as a best interests assessor for 4 years. She frequently works with people lacking capacity and living in either supported living or residential care. Her main case work is supporting adults with complex social care and health needs, with learning disabilities, autism and mental health issues. Julie has just started a Twitter account and would love some interesting people to follow her: @JulieMo09409624

Photo by Jari Hytönen on Unsplash