Where did the hysteria over the Liverpool Care Pathway originate?

As a staunch and outspoken supporter and defender of the LCP I have recently been contemplating a great deal why the whole furore started. We have been using the pathway for years so why now? I seem to recollect that a few years ago the approach was criticised by some eminent doctors in the national press but after a couple of articles and a little disquiet the debate simmered down and we as practising clinicians continued to use what is considered the framework for best practice when delivering end of life care. The issue certainly was not debated in every mainstream current affairs media outlet and politicised with numerous relatives stepping out into the arena to tell their own horror stories.

So what has happened in those few years? The LCP itself has not really changed. Perhaps the document has been developed a little but the fundamental principles of care remain the same. Maybe it is society’s expectations that have changed. There remains a huge taboo surrounding discussing death and dying openly despite the work of fantastic organisations such as ‘Dying Matters’ and ‘Good Life Good Death Good Grief’. Because of this taboo acceptance that all illness cannot be cured is sometimes limited and this can lead to huge friction between health professionals and devastated relatives when we reach the end of the line in terms of active treatment of a condition.

Perhaps it is because the press love to indulge in a little of what I glibly call ‘doctor bashing’ and feel that we as doctors must have some sinister, ulterior motives underlying our work in end of life care. By sowing these seeds of doubt that we as a profession should not be trusted and praying on society’s deep seated fears about dying news stories that sell papers are created. There is also perhaps a perception more and more that everything done in the NHS is underpinned by monetary factors, bed pressures and lack of resources and that these issues motivate us as doctors rather than our patient’s best interests, is which something I find very sad as I go to work primarily to look after people.

Perhaps the pressure on the NHS in recent years has led to such a time deprived environment in some hospitals that communication has suffered as a result and that is why families have not perhaps felt as cared for and as informed as they should have. This may have led to misunderstandings about the intentions of using an LCP approach as communicating in this area especially about the uncertainties surrounding dying is complex and takes time.

So for whatever reason the sparks of the story did ignite and the irresponsible handling by some of the media has left us as clinicians in a hugely difficult and worrying place. As a doctor I would hope that the relationship I have with my patients and their families is based on a solid foundation of trust; a trust that I am there solely to act in their best interests and to care for them. As a patient myself I trust my own GP and Oncologist implicitly. But when the press and sometimes the politicians start to undermine this trust then we are left in an extremely worrying and dark situation.

How do we fix it? I do not believe the problem itself has anything to do with the actual LCP. I think the solution is really very simple and yet difficult to achieve. When someone is diagnosed with a condition that is going to limit their lifespan such as heart failure, dementia, metastatic cancer or MND for example I believe early, open and honest discussion about prognosis is a necessity. This allows the patient choice and some degree of control over what will happen in their life. Investment in Palliative Care services so that these highly skilled professionals can be involved early on in life limiting illnesses would undoubtedly help in these discussions. This would replace the current scenario which often arises and is best illustrated by using cancer care as an example. A patient is diagnosed with a metastatic cancer. The Oncologists treat them. Eventually the Oncologist’s treatments become futile and their care is then handed over to the Palliative Care team at this point, who are then only involved for relatively little time in that patient’s journey. In my model the Palliative Care practitioner would be in the clinic when the patient is first diagnosed and work in partnership all the way with that patient. I am reminded of a quote from Dame Cicely Saunders, the founder of the hospice movement, “you matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.”

Therefore when we reach the point where the LCP becomes appropriate we would have patients and families who are well informed and hopefully accepting of their situation enabling the partnership work to continue seamlessly into the final hours and days. Because of the openness agenda the wishes of the patient would be known and could have been planned for enabling us to achieve that Holy Grail ‘a good death’.

So it is not fancy technologies or complicated research that is going to fix the problem. It is quite simply some good quality talking and a culture and environment that allows this to happen. One of the reasons I have been so open about my own dying both in public and in private with those I love is that I believe openness is inextricably linked to achieving ‘a good death’ and perhaps more importantly ‘good grief’ for those left behind.

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What happens when doctor turns patient?

I can still vividly remember the first doctor-patient I ever looked after. He was a retired GP and perhaps slightly unusually for a doctor was an extremely laid back personality. I was a brand new FY1 still scared of my own shadow. I recall physically shaking when I had to cannulate him for the CT that detected his widespread disseminated lung malignancy. He was so calm and collected about the whole situation, refused any Oncology intervention and returned home with his wife for palliative care.

 

I think most doctors have that ‘heart-sink’ feeling when they discover one of their patients is also medically trained. I know I do. Is that because we feel our knowledge or skills are under the microscope? Are we more scared of missing something vital? Perhaps we already have a professional relationship with that particular individual? Maybe we want to ‘look after of our own’ to the very best of our abilities and put ourselves under more pressure to achieve this?

 

With all this in mind I had very mixed feelings when last summer I became suddenly seriously unwell with an advanced, rare and aggressive form of sarcoma. At first I dealt with the situation by almost thinking of myself as my own patient. I wanted to see and interpret all investigation results for myself. I wanted to be fully in control of all clinical management decisions. It was almost as though I was looking in on my life from the outside. By keeping everything on a medical level initially I was probably subconsciously protecting myself psychologically from the horrendous situation I was facing.

 

As time went by and I endured the horrors of intensive palliative chemotherapy I managed to relinquish some control. This was because on occasion I was just too ill to be capable of clinical decision making for myself. When this happened I remember feeling weak and pathetic. I am not an Oncologist, although soon after diagnosis I had researched my condition thoroughly, but I had to rely on my Oncologist’s knowledge and skills, and it took a long time for me build this trust in him.

 

I feel that perhaps sometimes my behaviour could be compared to that of a teenager. If my doctors have suggested one possible path, I have wanted to pursue a different route. Although I know he won’t, I have a strange fear that my Consultant will somehow judge my own medical prowess if I ask a stupid question. I try not to but I always end up thinking about my care with my Physician head on. I like to ponder logically about all the likely outcomes of a particular decision or action and always contemplate whether doing nothing would be the best option for me too. This has changed my cancer journey to a bespoke one which suits me better. For example I have not had routine restaging scans since stopping chemotherapy as I feel that they would not change my management and watching my cancer deteriorate on scans could have a devastating psychological impact on me. Instead I have decided that I will only have a scan if I develop symptoms that my Oncologist feels he can help with his poisons. This desire to drive my own care has been instrumental in me achieving my wishes.

 

I have on occasion been a ‘difficult’ patient to look after in my eyes. I would not want to look after me! Sometimes I have been argumentative and quite assertive, although never rude. Because of this I have found myself having to apologise for being a nightmare several times. Luckily my Oncologist has a thick skin! I have also formally complained about my care twice when things have been worryingly unsafe. This is not because I have a personal vendetta against anyone who has cared for me, but because I have insight into patient safety from an unusual perspective and that hopefully by complaining standards of care can improve.   

 

It is so difficult when a doctor turns into a patient. We have baseline knowledge and skills, professional contacts, specific ideas and expectations that perhaps ‘lay’ patients do not have and these need to be considered when caring for us. All in all I feel being a doctor makes being the patient slightly easier for me, but probably makes the job for my medical team more challenging and I always have to remember this when interacting with health services.

How long have I got doctor?

Predicting prognosis for anyone is a tricky, almost impossible business. When I was diagnosed with a rare and aggressive form of sarcoma in August 2011 I rushed to the medical literature to look at the survival statistics and was devastated to discover the median survival time for patients with my condition was 14 months. That prognosis takes me to this month. However, I am still alive and very much kicking so everything is pointing towards me being around for a good few more months yet.

As a doctor working in Elderly Medicine we grapple with dying and death everyday frequently being asked by patient’s relatives how long they have to live, particularly in the very final stages of life. I always respond to this question with the phrase ‘I don’t have a crystal ball’ because no-one can accurately predict exactly what the future holds and sometimes when we fully expect a patient to die they recover and the reverse. We can try as doctors to give ballpark estimates based on our previous experiences but in reality we are just guessing and this is a dangerous business. If we give a shorter than expected prognosis then we run the risk of the patient and their family feeling short-changed and angry. If we give a longer than expected prognosis then we end up in the situation that I now face.

I have worked very hard over recent months to prepare myself and my family properly for my death. I have attended to all the practical aspects such as making a will and Advance Care Planning. I have decided where I want to be. I have made Chris a ‘memory box’ filled with letters, photos, birthday and Christmas cards and I’ve written letters to all my nearest and dearest telling them how much they mean to me. My funeral is planned to the tiniest detail. I have also talked openly with my loved ones about what is happening hoping that this dialogue will help everyone come to terms with it while I am still alive and help with the grieving process when I do die.

I am however now left in a difficult place psychologically. I fully expected to be pushing up the daisies by now and it really feels like I have hit a brick wall mentally. I was always very accepting of my situation and just got on with living my life but now there is an overwhelming feeling of living on borrowed time. I also feel somehow inexplicably guilty. I cannot rationalise this feeling but it has contributed to some very tearful and irrational moments over recent weeks. This is most unlike me as I am usually rather calm and placid. How do I overcome this and carry on with living my full and productive life? I guess I just have to climb over that imaginary wall where on the other side more life with more challenges awaits me. I am sure those people close to me will give me a step up with their love and support.

I am not the only one who is unwell in our family at present. My husband’s Grandma, who I am very close to, was also diagnosed with incurable cancer recently. After wiping away a tear when she found out her initial response was ‘well I’ll just carry on then for as long as I can’. She didn’t ask how long she had left and I have never formally asked my medical team this either. I know they cannot give me an accurate answer so I do not put them in that position. It is a very difficult situation as a doctor to be faced with a question that you cannot truly answer but has such important consequences for your patient. So I am about to outlive the median survival for my cancer but I have to remember that medians are just that, medians. Some people do better, some people do worse. I am extremely lucky to be doing better than expected and I will continue to embrace life to the full.

 If you want to read more about my story my books ‘The Other Side’ and ‘The Bright Side’ can be ordered from my website www.theothersidestory.co.uk. All proceeds from sales of the books are being donated to the Yorkshire Cancer Centre. You can also follow on Facebook www.facebook.com/theothersidestory or on Twitter @GrangerKate.

End of life care through the eyes of a doctor and a patient

I was horrified to read the recent articles ‘Care? No, this is a pathway to killing people that doctors deem worthless’ and ‘3000 doctors putting patients on death lists that single them out to be allowed to die’ published in the Daily Mail. As a Specialist Registrar training in Elderly Medicine and a terminally ill cancer patient myself I have strong views on these issues both personally and professionally.

The Liverpool Care Pathway (LCP) is accused of being a ‘backdoor form of euthanasia’ and that we as doctors using it are deliberately hastening our patient’s deaths for sinister motives. In reality the LCP is simply a document we use when we feel a patient has entered the very final stages of life in terms of hours or days. It prompts us to have open discussions with relatives and if possible patients, to stop unnecessary medication, to discontinue futile medical interventions and to shift our focus of care to symptom control, comfort and dignity.

We are also accused of heavily sedating patients at the end of life. This is not the case. We use small doses of medicines such as morphine or midazolam to help relieve distressing symptoms such as pain, breathlessness or agitation. Studies of the use of medication prescribed to patients on the LCP have found that very conservative doses are used and patients are certainly not ‘heavily sedated’. My intention when prescribing at the end of life is wholly to relieve suffering and definitely not to hasten death.

Most patients on the LCP in my experience are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’ as suggested in the first article. Sometimes we continue fluids subcutaneously if there are concerns about a patient suffering from thirst or if the family has very strong views on withdrawing artificial hydration. The problem with continuing intravenous fluids in these patients is that it involves inserting intravenous cannulae in order to administer them. This is painful, often very difficult and sometimes near impossible in patients that have been in hospital for a number of weeks. I know that when I reach the very final days of my life I certainly do not want to have multiple cannulation attempts and would much prefer that someone offered me good mouth-care to keep my lips and tongue moist.

The LCP is not a one-way road to death. In fact one in ten patients initially cared for on the pathway come off it because they improve clinically. We as doctors cannot accurately predict the future in all cases and much of what we do in Palliative Care is based on clinical experience and not hard science. Patients surprise us all the time and the key to providing good care in this setting is regular review and keeping an open mind whilst trying to communicate these uncertainties to the patient’s loved ones along the way.

When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier.

I’d also like to elaborate on the ‘death lists’ GPs have been accused of keeping again for sinister motives. These are more properly known as End of Life registers or in my area, the Gold Standards Framework (GSF). The idea is that for frail patients with multiple health problems or for people like me with life-limiting conditions GPs ask themselves the ‘golden’ question – ‘Would I be surprised if this patient dies in the next year?’ If the answer is no then they are entered on to the register and this sparks a cascade of service provision, discussions and care. For example, Advance Care Planning may be tackled so that patients can make their wishes known when preparing for the end of life. This includes very important decisions such as determining preferred place of care for death. The vast majority of people when asked where they’d like to die will say home but in reality most people die in hospital at present.

The GSF is essential, if GPs do not identify those patients requiring Palliative Care input how on earth can they focus care and services on the most needy? My name appears on the GSF and I am extremely comfortable with this. Although I am well, working and living a full, productive life at present there will come a time in the relatively near future when I am less well and I want this time to be properly planned for to enable me to achieve my end of life wishes. I fully believe the fact that I am flagged up as a patient who will need Palliative Care services will help me to die in the manner I want to. Therefore in my view End of Life registers are not about being ‘singled out to be allowed to die’ but more about allowing people at the end of their lives to die in the way they wish to.

Whenever end of life issues are discussed resuscitation always comes up as an emotive topic. I have witnessed numerous resuscitation attempts in a professional capacity and because of this experience from the earliest days of my illness I made my wishes clearly known that I did not want to have cardiopulmonary resuscitation in the event of me suffering a cardiac arrest.

The reality of resuscitation is that it is a brutal, undignified way to die with only a tiny percentage of patients surviving it and an even tinier proportion of these patients leaving hospital alive. Even when it does succeed in restarting someone’s heartbeat it does not take away their cancer or other underlying chronic disease. The panic and chaos surrounding a bed where a resuscitation attempt is happening is horrendous. Ribs are broken regularly during chest compressions and it can be difficult to obtain venous access to give drugs such as adrenaline so often patients are stabbed multiple times with needles.

The problem as I see it is that perhaps as a profession we do not communicate with patients and their relatives about this topic well enough. I personally think it should be routinely discussed as part of our clinical management plans. In my experience most older people do not want resuscitation and are quite happy to talk about it. Resuscitation is a treatment and we as doctors are not obliged to provide treatments that we feel are futile. However, the way we communicate this sensitively so that our rationale can be understood is of key importance.

One thing in life is certain; we are all going to die. We need to talk openly about it and plan for it properly. Tools such as the LCP and GSF help doctors to work with their patients to achieve this. It is a scary thought but accepting that not all illnesses can be cured, challenging both the societal taboo about dying and the expectation for eternal youth and health will mean many more people can achieve a ‘good death’ and in turn those left behind can grieve knowing their loved one had a comfortable and dignified end.

If you want to read more about my story my books ‘The Other Side’ and ‘The Bright
Side’ can be ordered from my website www.theothersidestory.co.uk. All
proceeds from sales of the books are being donated to the Yorkshire Cancer
Centre. You can also follow on Facebook www.facebook.com/theothersidestory
or on Twitter @GrangerKate.