Sorting out Patrick’s care

Mark Adams, a Community Learning Disability Nurse, shares his experiences with one of his clients.
Patrick Simmons (not his real name) had moderate learning disabilities and lived on his own. Patrick had no family, and relied greatly on professional supporters and a network of friends with similar disabilities. He was active in his local church and had made good friends there. With a robust system of tenancy support and day care, he managed well.

The cancer diagnosis

Patrick started losing weight, had difficulty swallowing and began vomiting. After a few months of this, his staff supported him to see his GP. The GP, looking at past medical records that showed Patrick would not eat and lose weight when he was stressed, felt that the symptoms were related to his learning disabilities. The staff stressed that this was different, but no further action was taken until several weeks later. Patrick’s symptoms had worsened, and a staff member took him to A&E. Further investigations revealed an oesophageal cancer, now in its late stages. Suddenly, lots of professional became involved. This included an urgent referral to our community learning disabilities team.

The first thing I had to do was to find out as much about Patrick as possible. I offered myself as a hub through which communications between other professionals could flow. It was quite a challenge to pull everyone together, because several of the different people involved had not talked to each other, and some were not aware of each other at all.

Telling Patrick

Patrick had not been told of his diagnosis. People felt it was important to give him the news as quickly as possible, but in a sensitive way. Unfortunately, one Thursday evening his GP told him quite bluntly that he had cancer and was going to die. I wish his carers had known about this beforehand, so they could be with him. When I visited Patrick at home the following day, he was very upset and refused to discuss what the doctor had told him. I was concerned as the weekend was approaching and Patrick would have to spend the whole weekend on his own. We arranged with his social worker that he could have a weekend of Shared Lives support with a couple who knew him.

The couple had known him for years, but hadn’t seen him for many months. They were shocked to see Patrick. They weren’t really well enough prepared. Patrick was actually very ill that weekend. It was clear he couldn’t stay at home on his own, and he agreed to accept a respite place on Monday night.

What to do about treatment?

In the meantime, there were hospital appointments and medical procedures to think about. Patrick hated hospitals and had a needle phobia. An IMCA (Independent Mental Capacity Advocate) assessed him and said that he did not have capacity to consent to investigations or treatment. She advised the hospital consultant that decisions had to be based on ‘best interest’. The consultant decided to place a oesophageal stent to help him swallow better, and to do an ultrasound to see if the cancer had spread to Patrick’s liver. There were huge problems with this. Patrick refused to go to hospital. When he finally went, the procedures had to be stopped after four hours because he didn’t comply, although he had been given sedation to help him cope.

Where can Patrick go?

The respite unit wanted Patrick’s bed back, so there was a desperate search for an alternative. There were only short-term beds, a few days at most. In the end, he was referred to a hospice and he agreed to move there.

The hospice was absolutely amazing. His care was exceptional. They looked after him so well. They even agreed that he could stay, although his prognosis was a couple of months and they don’t usually keep people that long. They knew that the only alternative was for Patrick to move to a respite bed with different providers every few days. I visited the hospice most days and supported the doctors and nurses in communicating with Patrick, making sure the staff was comfortable working with him and ensuring his consent and co-operation for procedures. Despite his needle phobia, they managed to give him a syringe driver (small machine delivering a continuous flow of drugs through a needle under the skin), so his pain was controlled.

Patrick died six weeks later. The nurses were really upset when he died. They had built up a deep relationship with him.

Looking back

Supporting someone who was dying was all very new to me. It was the first time I ever had to deal with something like this. Looking back, we managed to sort things out for him, but at the time I felt like I was a passenger in the back seat of a fast moving car. Now, I accept that things can feel out of control and not ordered. Things just change so quickly when someone has end stage cancer. Maybe next time I would be a bit more proactive. I would want to make sure that everyone involved knows what is happening, and that we plan for the changes as much as possible.