Brighton and Hove politicians share personal experiences in debate about care for the dying

The way we care for elderly people came under the spotlight in a recent episode of the BBC TV programme Panorama.

Most of those who work in rest homes and nursing homes handle their vulnerable residents with warmth and compassion.

But the programme highlighted exceptions. It made for harrowing viewing. The subject has also been raised closer to home.

Members of the Brighton and Hove City Council Adult Care and Health Committee discussed end of life and dementia care on the same day.

They were keen that any new policy should ensure patients are able to have a “good death”.

Some councillors touched on their personal experiences – and they weren’t characterised by best practice.

They spoke about seeing people suffer. They spoke about not being kept informed as relatives neared the end.

And they spoke of a feeling of not being prepared for the death of someone close and the shock and upset that followed.

Some felt guilt for years afterwards about the way in which their relatives died.

A key cause for concern was the “Liverpool Care Pathway”. It is a way of caring for someone deemed to be dying.

Councillors Mo Marsh, Mary Mears, Dawn Barnett and Anne Meadows spoke out one by one.

They mentioned few personal details but Councillor Marsh was talking about the end of her mother’s life and Councillor Mears was moved to speak by what happened in her mother’s final days too.

Councillor Mears said that she had not realised that she was watching a loved one effectively being starved to death and deydrated.

She said: “It’s a very personal thing. Someone could have had a conversation with me but they chose not to. It’s very easy just to turn the morphine up and up.

“I’m not alone in this. It’s happened to a lot of people. There are some excellent doctors and nurses but I’m not confident that (best practice) will happen across the piece.

“When nobody has bothered to have that conversation with you, that will always stay with the family.

“The reality is it’s not happening in too many cases.”

Councillor Anne Meadows said: “I remember looking after my father in hospital.

“I have been through this and I was told nothing and it was very upsetting.

“It is about families’ participation and understanding and having that chance in a way that Mary and I weren’t given a chance to do.”

The Liverpool Care Pathway has been widely adopted in the NHS. It was designed for cancer patients in hospices.

Most trusts are paid to hit targets linked to it. Senior medical figures have voiced concerns.

One described it as a regime of sedation and dehydration. Another referred to state-sponsored euthanasia.

Professor Patrick Pullicino, a leading clinical neuroscientist, called it “an assisted death pathway rather than a care pathway”.

Councillor Barnett, a retired carer, also spoke about the distress of sitting with someone who was effectively being dehydrated.

She said: “I have held a stick with a sponge on the end and that person has sucked and sucked on it.”

Councillor Geoffrey Bowden said: “Sometimes carers don’t always think families can take the truth and withhold information.

“They’re well meaning but as we’re hearing the consequences can be painful and long lasting.

“Families can feel great distress and can sometimes transmit this distress to the dying person.

“Doctors may need better training in how to have these difficult conversations. There is a need for honesty and openness.”

Geraldine Hoban, chief executive of the Brighton and Hove Clinical Commissioning Group (CCG), said: “It’s sad to hear about your upsetting experiences but that’s not how it should work.”

She said that the aim of the new policy was to improve communication.

And Dr Christa Beesley, the CCG clinical lead for dementia, said: “What we’re trying to promote here is that people have a good death and they and their families have the care they want.

“Anyone who is dealing with people dying needs a lot of training.

“We’re going to be more upfront. We’re going to talk about dying. We’re going to be much more open with people.

“It should be an open discussion. People should be talking about this.”

It wasn’t hard to discern strong and deeply felt reservations among the elected members of the Adult Care and Health Committee.

Urging his colleagues to adopt the “Sussex Integrated End of Life and Dementia Care Pathway”, Councillor Ken Norman said that the new approach would improve on current practice.

With one exception, the committee voted in favour.

The Sussex pathway comprises six phases:

• Recognising that there is a problem (awareness)
• Discovering that the condition is dementia (assessment, diagnosis and involving the person with dementia in planning for their future care including end of life)
• Living well with dementia (maximising function and capacity and planning for the future to enhance wellbeing)
• Getting the right help at the right time (accessing appropriate and timely support and reviewing advance care plans)
• Nearing the end of life, including the last days of life (palliative care and ensuing advance care plans are reviews and respected)
• Care after death (supporting relatives and carers to maintain wellbeing)