This week has been, to say the least, a difficult and painful week for many people. Two very important, objective reviews have come out which have scrutinised practice within Health Trusts across the country. Both made for very uncomfortable reading but I would like to concentrate on the first. This report was the result of a review on the use of the Liverpool Care Pathway across the country. As a nurse, I welcome wholeheartedly the review, which can be found under this article, and its findings but I cannot help but feel that the reaction of many self proclaimed people in the know and the media to these findings will have created a 6 to 12 month period of painful confusion and worry for both patients, relatives, doctors and nurses.
Let me be absolutely straight with you. I have always thought that the Liverpool Care Pathway (LCP) is a great aid to providing excellent end of life care. For those who are not aware, the LCP was introduced in order to bring the best effective and transferable aspects of hospice care into the hospital ward environment. Contrary to popular belief, the paperwork operates as a comprehensive reminder for doctors, nurses and other members of the multidisciplinary team to leave no stone unturned in assessing needs, implementing appropriate treatment and recording it in a clear and auditable, transparent way. Yes “tick boxes” are involved in areas where needs have been fulfilled without any notable change. Where changes occur, we are required to write comprehensively our findings and actions. What is meant to result is a consistent approach to end of life needs to treat and care appropriately and non invasively with a palliative rather than a curative approach. The decision is not made lightly and should always be done by a senior physician with full consent and understanding of the patient if possible and also the close relatives.
There have been many areas of contention. It appears that there has been some practice where relatives feel their loved ones demise was caused more from the LCP than from the condition they were admitted for. I cannot comment on what happened and what went wrong. I know that things have gone wrong in parts of the country and it disturbs me greatly. I can only comment on my own experience.
Usually on the LCP a change of approach in treatment and care occurs. That much is evident to relatives and can be alarming if they are not made fully aware of the situation, why we are doing something in particular and why we are no longer doing something else. Yes, sometimes fluid is withdrawn where a patients ability to process it is non existent and to give fluids will overload them and become another co-morbidity with the many already existing ones. That said, I have never, ever refused a patient a drink. There is no evidence that not doing so is beneficial and no where on the LCP does it state that oral fluids must be ceased. Where a patient is unconscious I have given complete mouth care. Sometimes nutrition has been stopped. This is because the patient’s physiology has become so acidotic that their body cannot process that fuel. That said I have never refused food to a conscious patient who wants food. Patients under my care have not dehydrated or starved due to the LCP, their demise has occurred because they were dying.
Pain relief is a major aspect of palliative care. Within the range of “crisis medication”, there are options to employ a syringe driver for which to give the minimum dose needed to relief pain. Pain of course is difficult to assess in someone with fluctuating consciousness. It is not an exact science. My approach has always been to attempt to go through every need that might be causing distress with pain coming last in the list. It is a recognised risk that with some opiate pain relief, this can affect the breathing. Once again, this has always been fully explained to patients if possible and always to relatives. Unfortunately, at the later stages of life, there is an increased risk of reaction to certain treatments. The body is so weak it just cannot process what it is given and fails finally to respond appropriately or compensate for the patients condition. It is recognised that there may be a point where certain pain relief drugs may not help the body compensate; where the level of pain demands doses beyond which the dying body can cope with. That said I have had many patients on the LCP who have not needed any medication for symptom relief. This has been recognised and they have still slipped away peacefully.
Now regardless of whether one thinks this treatment and care is ethical or not, I have acted within the law and have, along with the doctors and the relatives and patients, aided the formation of some very difficult decisions. At all times, consent has been given only after the patient and or the relatives fully understand what is happening and why.
I can safely say that I have never found myself questioning such care or treatment and I have always been able to explain it satisfactorily to patients and relatives. I can safely say that is the same for all my other colleagues who have used the LCP. So it is with great sadness that I have read some shocking stories about how the LCP has been incorrectly utilised. How relatives and patients have been made to feel that their lives were cheap. How the LCP seemed nothing less than a convenient and legal form of unsolicited euthanasia. It is with huge sadness that I have to accept that, because of this, the public perception of the LCP is that it is a pathway of doom and imminent death. (I might add that I have happily and promptly initiated removal of patients from the LCP where there has been a notable improvement in condition). Because of this, I have to accept that the LCP no longer has a future beyond the coming year; not because it is bad practice but because it is associated too much with patients’ and relatives’ cognitive structures regarding what causes an undignified death. Whether this has been due to common instances of bad practice or whether it’s a result of the media scare mongering, we have to accept now that the purple booklet at the end of the bed will now instil fear more than it will instil comfort and reassurance.
There are two issues at stake here then. Two critical issues of which I know those responsible for them have no immediate answer.
- I have full faith that a set of good guidelines will come about regarding end of life care according to each condition. I have no doubt that this process will result in a better process for giving patients a good death. The problem is that we have nothing else but the LCP to use until such time as it is phased out and replaced. How do I as a nurse reassure my patient or their relatives confidently about the LCP after this review and the media storm surrounding it? If they refuse it, I and the doctor I work with have to observe their right to decline not just the LCP but essentially all aspects of good end of life care. How does that affect symptom relief? This essentially has the potential to bring about paralysis in my ability to care for a patient fully. This potentially scares the patient away from having a dignified, symptom free death. This leads to my next point regarding clarity and transparency.
Please note that since I wrote this blog, I have conversed with the charity Dying Matters who have pointed out very recent guidance from the National Council for Palliative Care. This very helpful document can be found at this link: http://www.ncpc.org.uk/sites/default/files/Guidance_for_doctors_and_nurses%20_Liverpool_Care_Pathway.pdf
- What the media seems to ignore and consequently means the public fails to be aware of, is that whilst the LCP may be phased out, the treatment and method of care, its priorities, its emphasis on symptom relief will not be. Palliative care is going no where because good palliative care is good practice. Treatments will still be withdrawn at times. Fluid will, in certain circumstances, be withdrawn. Opiate pain relieving drugs will still be prescribed. Yes thankfully there will be a system which ensures that the treatment plan is specific to the patient . My point is that treatment plans specific to patients already exist. When members of the public or media call for the end of the LCP, what exactly are they calling for the end of?
What bothers me about the reaction to the very grounded review and its report, is that it misses the point about the actual recommendations. Phasing out of the LCP is but a small aspect of the recommendations because, actually, the LCP is but a small aspect of good end of life care. What seems to have been overlooked is the recommendation for good quality training and assessment in end of life care which is a major recommendation of the review. That dying is an integral part of training for student nurses and doctors. The LCP, frankly is not the scandal, the bad practice is.
If someone is not trained to a high enough standard to know the issues surrounding what end of life care involves then it doesn’t matter what you call the care plan that is designed. It will fall as flat on its face as the LCP seems to have done. The issue is training and expertise in end of life care which the review has identified is lacking in too many places. The issue is lack of access to palliative care teams both in hospital and in the community 24 hours a day 7 days a week. The issue is timely diagnosis of the dying patient and training in communication. These are all things that, if absent, will hinder the delivery of good palliative care regardless of what care plan is devised, what it is called and what colour it is. This is the real work that is going on and these are the issues, the story, that the public need to hear. Honesty and transparency is something that needs to be cultivated in the NHS. It is growing and gaining momentum. Bad practice is being reported more, not because there is necessarily more of it, but because healthcare professionals and trusts are becoming more transparent in what they are delivering. It is a crying shame therefore that the media aren’t always playing the same game and are just hindering the process with misrepresentation and misinformation in order to tell the juiciest story.
Read the report of the Independent Review here: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf
The website for the excellent charity Dying Matters can be found at: http://dyingmatters.org/