I admit, this won’t make easy reading for some and it certainly isn’t light-hearted. Having said that, it is something I feel very strongly about and a topic I believe to be far too easily pushed aside in our modern Western life. We may be a little more willing to discuss what may become of various body parts should we die tragically but what about growing old? What about an incurable illness or dementia in all its awful guises?
I hope This doesn’t upset anyone, but I do hope it makes anyone who reads it, think and maybe even TALK about death and dying.
Do you have a life insurance policy? How about a prepaid funeral plan? A Will? Have you discussed with your nearest and dearest which, if any, organs you will donate for transplantation?
It’s now no longer taboo to talk about what we prefer to happen to our earthly remains and any finances after we die. But how many of us have even thought about what will happen in the weeks, days or hours before we die?
Despite as Benjamin Franklyn proclaimed some 250 years ago, “The only thing certain in life is death and taxes” many of us are reluctant to even think about the act of dying.
Given the choice most of us would die peacefully in our own bed with those dearest to us nearby. Unfortunately, for many of us, death will occur in a hospital bed, and while this may be appropriate for some, for others, whose death is expected this does not have to be the case.
The Liverpool Care Pathway for the Dying Patient (LCP), in conjunction with the Gold Standards Framework Prognostic Indicator Guide, offers a tool for patients and doctors to broach the subject of death. It gives us permission to admit that we are mortal, that not all illness and disease can be cured and that we do in fact have choices about what we want in the last few months, days, hours of life.
We have become complacent and demanding; demanding that every effort be made to prolong our moment of death for as long as possible; complacent in believing that our doctors have the ability to make us all but immortal. This is not helped by the ever increasing number of drugs that promise, despite the cost, to extend our lives for a few more weeks, days, hours. No generation before has had this opportunity, but, is this always a good thing?
It’s not until something catastrophic occurs to a friend, relative, or even ourselves we are brought up sharp. Suddenly death looms but we won’t discuss it. We are societally more willing to discuss our sex life than the fact we will die. Right to the very last minute, we will expect a miracle drug to be produced. Regardless of how unpleasant side effects may be, we want our doctors to fight to the end. Death is not an acceptable outcome. We want our friend or relative to live for ever. We’ve not discussed death with them. We haven’t even considered the possibility that they will leave us. Even with our very elderly and frail relatives, the thought of death is unpalatable. We allow them to be shipped may be numerous times, to hospital from their home, be that in the community or residential care, for treatment of infection. Do we ever stop and ask whether they want to be treated aggressively? Do we dare to consider how we ourselves would wish to be cared for if our roles were reversed?
I’m pretty certain that if given the option, all of us would wish to die peacefully in our sleep in the comfort of the place we call home. Unfortunately, for most of us, this is a fantasy. Just as medicine will not deliver immortality, many of us, if not, most, will thanks to the miracles of the medicine, pass our final hours with tubes and wires in every orifice; with machines bleeping and busy nursing and medical staff buzzing around us.
It doesn’t have to be this way. It’s not the way I want to spend the last moments with any of my friends or loved ones, whether they are in the bed or around mine.
The LCP has been developed in order to address some of these concerns. It was highlighted as a model of Best Practice in the NHS Beacon Programme 2001. NICE guidelines 2004 recommend LCP in the palliative care for cancer patients. The Our Health, Our Say white paper 2006 recommended it as did the End of Life Care Strategy DH 2008.
So what is this amazing innovation? As I, a lay person understand it, it’s really very simple. It requires that doctors and nurses discuss end of life care with the patient, where appropriate, and their family/carers. It asks that doctors rather than suggesting directly or by intimation, that a cure can be found and death cheated by medical intervention, face the fact their patient is dying and that medical intervention would merely prolong the inevitable and may in fact cause unnecessary distress to the patient.
In its simplest form it asks a multidisciplinary team to decide when further intervention is counter effective. It explicitly does not preclude the administration of medication to relieve pain or discomfort, anxiety and/or restlessness. It does not in any way suggest artificial feeding and hydration be withdrawn.
Where the LCP has been adopted and implemented, studies suggest that the vast majority of people died in a place of their choice and families reported high levels of satisfaction.
I have a progressive, degenerative disease. I’m never going to get better. The best I can hope for is a very slow decline in symptoms. I know there is no cure for my illness. I have very effective symptomatic treatment and I am not planning to meet my ancestors any time soon.
The LCP has been recommended by various studies for over 10 years now. Like most of my age, in the past decade I have lost a number of close family members. I also worked for most of my adult life, with the elderly and frail in care homes, the community and in hospitals, and as a volunteer counsellor for people with life-long diseases. Yet until last week I had never heard of the LCP. If in my personal and professional experience, I’d not heard of it, what are the chances the general population has heard of it or at the very least not talking about it. At risk of repeating myself, death is the one and only thing any of us can be certain we will face. Isn’t it time we stopped hiding our heads in the sand and began to face up to this fact and plan for it?
We are now subjected to numerous advertisements in the media for insurance plans that for a small sum each month, providing we live for up to two years after the start of the plan, will leave sufficient funds to pay for our final journey and even a bit left over to help the kids or grandkids. There is never any mention of what we might face in the months, weeks, days, hours leading up to the time when the insurance policy comes into play. We can even make plans for and pay in advance for our funerals, but still there’s no mention of how or where we might draw our final breath.
I accept it must be incredibly difficult for doctors to admit that nothing more could, or possibly more importantly, should be done for their dying patient but perhaps doctors should revisit the oath they took on becoming doctors. Doesn’t it say ‘first do no harm’? Surely there must come a time when as a professionals, doctors have to admit defeat and face the fact that nothing more can be done? More importantly should they not be more willing to discuss this fact with their patient and family/carers? I’d further suggest that the time to do this would not be at a time of crisis when emotions are high and rationale not always prevalent, but in the case of degenerative, incurable disease, soon after diagnosis.
It’s time to be brave. It’s time for us as patients to accept it is not possible to cure all illness and to face the fact that we will die. This is true whether or not we have a current life threatening/shortening illness. The vast majority of us can hope to live to a ripe old age. But old age its self brings illness and disease. It is time to ask ourselves how we want to be cared for in our dotage and to make those closest to us and those providing medical treatment, of these choices.
Nothing needs to be written in stone and the LCP combined with the Gold Standard Framework is a positive method of making those providing care at the end of life aware of our wishes.
There needs to be a huge shift in popular thinking. The catalyst for this must initially come from the medical profession. It is not going to happen spontaneously. We need to be told about choices, advised about risks and consequences and to be given permission to discuss our mortality openly and without judgement.
The LCP literature states that the plan is only as good as those implementing it and that on-going training and support for professionals involved with end of life care is essential for it to be effective. This will of course cost money and require commitment from Health Authorities and fund managers as well as the professionals themselves. These costs could be met by the reduction in costs of unnecessary repeated admission to hospital, the reduction in the need for ICU beds, accident and emergency admittances and even care home beds. But the will has to be there. The demand has to be there and neither will be until more people are aware of their end of life choices and make the medical profession aware of their wishes.
As Dame Cicely Saunders, founder of the modern hospice movement said:
“You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”