Wednesday, 9 January 2013

Liverpool Care Pathway - A letter To Mr. Cameron

This is posted without comment and without prejudice.

This is ehealth -

Dear Prime Minister,

My name is Louise McCullagh. I am a twenty eight year old, mother of one. I am university educated and I work in high secure forensic services for the NHS.

I write to you to express my concern regarding a situation I have experienced and that many other people in the country have experienced, or will go on to experience. Please excuse any factual inaccuracies; I am not an expert on the topic which I am writing about. I am writing from my heart and a great deal of emotion and passion has fuelled my words.

I am certain that I speak on behalf of many people. As such, please take the time to read my letter to the end. In sending you this, I am fulfilling my promise to my family; please respect that and give my message some thought.

As I understand it, current law enables doctors to withdraw any life sustaining treatment so that, through inaction, a person may die. This decision is reached taking in to consideration the patients wishes, in the form of advanced directives and in consultation with the family. I am aware of the Liverpool Care Pathway (LCP) and understand that its implementation has certainly contributed to the peaceful passing of many terminally ill people. My understanding of the LCP is that it was developed to ensure that a patient, who is dying, will not suffer unnecessarily in their last hours or days, and will be allowed to die in a dignified way. My message to you today is not intended to detract from its success.

The case I would like to bring to your attention involves my elderly Grandad. Recently he was hospitalised due to choking, as a result of being unable to swallow. He suffers from Parkinson's disease and has spent the last year gradually deteriorating in a care home. He has been registered blind for many years now and has been unable to communicate effectively, as a result of the debilitating nature of the disease, for at least the last year. 

It became necessary for the doctors, at the hospital, to give him IV fluids and try to give him food via a tube, as it was recognised that he would never regain his ability to swallow. Due to his confusion and agitation he would not tolerate the NG tube and, as such, they stopped trying and his life was being sustained by the drip only. In line with my Grandads wishes, we consulted with the medical staff at the hospital and were in agreement that my Grandad would die as a result of not being able to take any nourishment and the fluids were in fact keeping him alive. My Grandad had made his wishes clear, prior to his struggle to communicate, that in such a circumstance he would want to be allowed to die with dignity, and not have his life sustained, if it was observed that he would shortly die. The doctors at the hospital followed the protocol and stopped giving him the medical treatment they had thus far provided. He was discharged to his home, literally- to die.

I have for a long time (more so in light of this experience) struggled with understanding the laws surrounding euthanasia. If it is legal to allow a person to die through inaction, why then can't there be allowances for medical professionals to take action? Passive or active, if the result is the same, why does the law prevent action?

Although we recognised that there was no other alternative to stopping my Grandads treatment, it was assumed that the LCP would meet his needs during his last days.

Allow me to explain why I believe that the LCP and other similar variants are not useful, nor applicable to cases such as my Grandad's. 

His dying process is neither comfortable, nor dignified and is certainly not in line with his wishes, or his families, regarding his end of life care.

As I write this letter, my Grandad has been without food for approximately two weeks and exactly ten full days without any fluids. He has been in his own home for one week. 

The decision for him to die was made over a week ago in the hospital. If that decision was made back then, why couldn't it have happened back then? Why couldn't the family and the medical professionals (with consideration for my Grandad's wishes) have jointly decided to end his life there and then?

Advanced Directives and the freedom to have choices such as 'Do Not Resuscitate, were established so that a person may have input into their end of life care. 

If I had told my Grandad that his last days on earth would involve starving and dehydrating to death, I do believe he would have argued that his reasons for not wanting to be kept alive, by medical intervention, was because he did not want to suffer; he did not want his loved ones to watch him suffer. He would have chosen to be administered with something that would result in the same outcome, as that which will inevitably occur. But as the law stands, he does not have that choice!

Because of current laws, my Grandad is dying an undignified, slow, possibly agonising death.
We, his family, are watching this happen to him and hoping and praying that our presence and our love is sufficiently enveloping him so that his suffering is minimised.

Physiologically, we can see what this is doing to his body, his vital signs are weakening, and sometimes such signs lead us to believe he is in his last minutes. Unfortunately, he has lived through such occasions and his strong and healthy heart has continued to beat. 

What a statement for a Grandaughter to be reduced to making - 'Unfortunately, my Grandad is still alive'. 

Cognitively, I cannot begin to contemplate the possibility that he may be aware of what is happening to him. The thought of him being trapped inside his own body like a prison, unable to speed up the process, unable to comfort his tortured family as we keep a loving vigil at his bed side, is heart breaking.

We are all with him; sometimes there are more of us at his house than others. Some of us take shifts whilst others get a few hours sleep, or pop out to buy more microwave meals. We've played cards to pass the dragging hours. We've reminisced and laughed about happier times. We've gathered round in what has seemed like the end and held each other, and him, and begged life to let him go. 

We're all suffering because of this. Our extended families and friends are suffering at the sight of what this is doing to his family. My son has barely seen his mother for over a week. Our jobs, businesses and industries are undoubtedly suffering, as we are all unable to fulfil our professional roles. Indeed, some of us, when my Grandad does eventually die, will need a period of time to recover from the emotional rollercoaster we have ridden.

Sir, I have never seen so many people, all in one place, collectively hurting so much. All dealing with this in our own way; each occasionally breaking down and needing the help of the others to pull through. Some family members are unable to eat or sleep because someone they fiercely love is dying, deteriorating, and suffering in the next room.

Furthermore, consider the time and money that is being spent on the nurses who are visiting my Grandad's home regularly throughout each day and the drugs they administer to calm him. We call them when my poor Grandad begins to show signs of being aware. He claws at the air, shakes, appears agitated and opens his eyes wide; staring out to us, beyond us, to a place perhaps only he can 'see. And how many other homes, hospices and hospitals is this occurring in, right now? How many other individuals are gradually deteriorating in front of their loved ones?

As a country, as a species, we are living longer mainly due to medical advancements. The number of people aged over sixty five is growing, and will continue to grow. 

As such, is it not reasonable to suggest that the situation that my Grandad and my family are experiencing will become more common place?

I have heard people comment that, by allowing someone to die, through actively giving something that will result in their death, they are playing god. They are in fact killing that person.
Ok, so are the people who collectively decide to withdraw life sustaining treatment not also playing god? 

They are, after all, allowing someone to die - simply through inaction. I do not believe any God would allow someone to die slowly, painfully, gradually deteriorating whilst their loved ones watch, powerless to speed things up towards the inevitable.

My Grandad has taught me many things; he has given me many gifts. It is too late to do anything for my beautiful Grandad now. But I would like to give my Grandad a gift by promising to try and stop this happening to others. I'm just one person, but I believe I speak on behalf of many other human beings.

Of course the governing and policing of such a change in the law will take thought and consideration. Measures must be put in place to ensure such a provision is not abused. I am bringing to your attention, one example where the Liverpool Care Pathway is inappropriate to deal with the end of life needs of someone who has no active disease process. Therefore, death will only occur because of starvation and dehydration. The implementation of this pathway has, in fact, contributed to suffering and indignity; the exact opposite of its objectives. For this case, and undoubtedly for many more cases, we need to do something more. Something further to prevent other people from enduring what I have had to endure, what my family have endured and what my poor, beautiful, beloved Grandad is still enduring.

I owe him so much Mr Cameron, please let me give this gift to him.

Yours Faithfully

Louise R. McCullagh

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