The Liverpool Protocol

[Sally44]

http://www.lifesitenews.com/ldn/2009/sep/09090301.html

 

Some on this forum may know that my father died early January this year.

He had end stage dementia, but went into hospital with a pneumonia.

He was put on the protocol and died some days later.

 

This is a very sensitive subject to me, so please do not post on your opinions regarding my case. Just on the protocol itself. I can live with the way he died. One of my siblings cannot and they feel he was murdered by the very people that should have treated him and that he could have had years of life ahead of him. What the quality of that life would have been is another subject. But I wanted to post about this because many are not even aware it exists.

[justine1]

I have to say I have not heard of this before.I have nearlt seven years experience working both in a nursing home and a care home.I have to say the two are extremely different.The nursing home had far more patients and in turn the patient to staff ratio was quite ridiculous to say the least.It also had more medical interventions and higher rate of deaths.

 

The care home,was as close to a home as could be.It was comfortable and very personalised with regards to care plans.The staff were able to have a good relationship with the residents because there was an excellent staff to patient ratio.The residents also had more freedom to walk around they were not forced to stay in a room all day everyday.The residents chose everything.I worked on the dementia unit at this particular home for two years.There were very few deaths and most of the people who did die it was when they had been tranferred to hospital for other illness eg.broken hip.So in my humble opinion and experience I think people with dementia can live very good and happy life,as you say Sally it may not be as long but at least they can chose to die the way they want.On the other hand some people have the fear of "losing their mind" and this fear they may wish to be sedated and "killed off" I am sure you have heard many stories about ppeople going abroad to do exactly this.

 

Ultimatley I think every person in this position should have that choice and I think they should make the decision when the first get the dx of dementia as they may not be able to do so later on.I am strongly against family members making these decisions though!!!

[Jannih]

It does raise concern.

 

I can agree with the withdrawal of active treatment for someone who is terminally ill, but withholding fluids and leaving someone to die of dehydration doesn't feel right to me.

 

Eight years ago, my mum was dying of terminal lung cancer. She was in hospital and due to the tumour being very aggressive and far gone they decided not to operate but was offered palliative treatment to try and make her comfortable. So far, so good.

 

One day, whilst visiting, I found her very distressed as she wanted to go home and die in her own familiar surroundings. I asked the nurse in charge if this could be done, and was told that as it was the weekend, if we took her home, she would have to go without her medication, naso gastric feed apparatus etc . I resolved to come back on Monday to arrange her transferral to home.

 

I sat with my mum into the evening, when a nurse came in with a diamorphine injection. I questioned this, as she wasn't in pain. The nurse told me that it would settle her down for the night. I left. At 6.00am I received a call from my dad and sister to go to the hospital as my mum's condition had deteriorated rapidly. When I arrived I found her attached to diamorphine pump. Although this is standard pain relief for someone with terminal cancer, she did not need it. It effectively killed her off quickly as it depresses the respiratory centre in the brain. She died 30 minutes later.

 

What I found so difficult to come to terms with, was that they denied her, her one last wish to die at home. My sister told me that up to the last hour of her life she was begging my sister to take her home. I felt responsible for my mum's early death. I should have been more forceful with the nurse. She would have died eventually but I think the hospital denied my mother dignity in death, by hastening her death, so she could not leave the hospital.

 

I don't think it will be too long before they start killing off the elderly, financially non-productive members of the population. This Liverpool protocol seems to be the thin end of the wedge. After all they will have to cut NHS spending somehow !

 

 

 

[chris54]

Many many years ago my grandmother, who was in tremendous pain from cancer, was given a painkilling injection by her GP of morphine and died withing the hour. My mum was present at the through out and is convinced that the dose of the injection was intended to end her life. We were all grateful that the end had come. I must stress that there was very limited treatment available then.

 

Two years ago my Father was in a rest home, he had Parkinson's amongst other thing, non fatal but becoming more and more debilitating.

He had expressed a wish to end his life a few times. Then one day he ask to see his GP of nearly 30 years. After being with him for some time she come and told the staff, "If he doesn't want to take his medication, that's OK". My father did not take anymore medication, refused all food, and did not leave his bed again. He died 8 days later.

 

 

[zenemu]

I agree with Jannih, there are ways and means to go about this kind of thing, and I cannot help but notice in these cases that the families wishes are not considered at all. I am not saying the family should have the final word, but some consideration as to the implications of following the families wishes shold be taken into account.

 

I will also add that I cannot see anything to be gained from denying fluids to these patients, I am unconvinced even under deep sedation as to how comfortable that would be.

 

Zen

[Sally44]

In our case my father had deteriorated to the extent he did not know anyone, even his wife. And he needed help with all daily tasks. That we could live with. When he got pneumonia he was at home and because he had been in hospital recently and had been agitated and caused the staff to practically have a nurse sat with him all the time, we decided to keep him with us at home.

But when the nurses came in the evening, they said he was not to be given anything by mouth because he was not capable and it would go into his lungs.

He became more and more distressed, so we called the emergency doctor who called the ambulance. They put him on oxygen and that lessened his anxiety.

We went into hospital.

The doctors said that he would die without the oxygen. But that giving oxygen in itself ends life sooner.

They put him on a drip for fluids and some antibiotics.

When the anibiotics had gone in, they held a meeting with the family where they said he was not going to come home. That he would die without the oxygen. That he would need to stay in hospital until he died. He was agitated and distressed and unfortunately family were no comfort because we were as strangers to him.

As he had a serious infection (and actually died of septicemia and pneumonia) they gave him painkillers and sedated him. They withheld fluids, food and antibiotics. He died three days later.

 

Knowing my father he would not have wished to have been treated. Even if he had recovered he would have had to go into a residential home, which he always said he did not want to do.

 

But considering ending life early is supposed to not be an option. This protocol is exactly what that is. I can live with the decisions we made because I think they were in my fathers best interests. But another family member is really struggling with it.

 

And although I think this protocol can be useful in some circumstances. There is a possibility that for people who do not have a family network around them, that require alot of support, that there is no-one to question this protocol and ask for the person to be treated to see if they recover first.

[Sally44]

Another situation I came across whilst I was on a hospital placement was this scenario.

An 80 year old woman with diabetes was admitted with loss of blood flow to both legs and arms. This is a symptom of diabetes. The woman was currently being looked after by her daughter.

The only way to treat the infection, which was resulting in gangrene/scepticemia, was to amputate the limbs.

This elderly woman categorically stated that she did not want that, and that she wanted painrelief and to be allowed to die.

Her daughter did not agree to this and wanted the amputations to go ahead and for her to take her mother home.

 

Doctors did not know what to do. They began by following the mothers wishes until she became so ill she could no longer express any 'wish' for non treatment. At that point her daughter demanded she was operated on and she was taken to theatre and her legs/arms were amputated. My placement ended and I have no idea what happened afterwards.

 

But at the time I was very unhappy about this situation. But not sure what other options there were.

 

Maybe we should think about our final wishes and make sure they are known and written down somewhere so that everyone knows what we do and don't want.