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Mr Smith — in memoriam

I will never forget the moment I encountered my first dying patient. He was neither the first patient I had seen die, nor the first death I would certify. But he was the first patient in whom I had watched the process of dying.

At 3am, nearing the end of my first medical night shift, I was called to a side-room by the nurses. The patient — we’ll call him Mr Smith — had deteriorated. I stood at the end of the bed to see a frail and cachectic old man with sunken eyes, whose breathing was rapid and shallow. He had bi-lateral pneumonia and despite the best possible care had taken a turn for the worse earlier that night.

I stood at the end of the bed and mentally ran through my ABCDEs — everything medical school taught me that I ought to do. And I baulked at the idea.

I could attempt to take bloods, to site a cannula, to take an ABG and arrange a portable chest X-ray but in truth, with a heart rate of 40 and a BP not much higher, it was not going to change anything and would almost certainly cause pain and distress. Advice from a consultant earlier that week was ringing in my ears: what is this test going to show us, and what will this intervention achieve? Whatever I did, Mr Smith would die.

And so I paused and did what every self-respecting junior does and called the med-reg: ‘I don’t know what to do.’ She assessed Mr Smith, agreed with my conclusion, and started him on the End of Life Care Pathway (my trust’s equivalent of the LCP — Liverpool Care Pathway).

Mr Smith was written up for medication to help his agitated breathing. No family could come so I sat with him for the few minutes before my bleep summoned me again. He died soon after. I was relieved he was spared the additional pain and indignity that extra intervention would certainly have caused in his last hours.

End-of-life pathways have recently come under savage criticism in the press. The LCP in particular has been labelled a ‘death pathway’, a ‘backdoor to euthanasia’, and a way for trusts to save money by emptying beds more quickly.

The LCP is used when the focus of care has shifted from active intervention to palliation and is tailored to the use of the individual, and under constant review when used properly.

From meetings and conversations I’ve had, I believe end-of-life pathways are an important issue for many junior doctors and I think there are two reasons for this.

First, it is said that end-of-life care is always surrounded by emotive issues, which can muddy the waters of debate. When we say ‘emotive’ are we are thinking only of patients and their families and forgetting ourselves?

Professionalism tells us that our thoughts, feelings and emotions must take a back seat to those of our patients and their families — and rightly so — but often we overlook our reactions completely. We forget that our empathy and humanity often make us the best doctors. This is perhaps the elephant in the room; the emotive factor that we must learn to acknowledge and work around if we are to debate end-of-life care with clarity and insight.

I hope we all remember our ‘first dying patient’: the suggestion that we hurried their end for a trust’s financial gain is offensive and hurtful.

Fear is the second reason for junior doctors’ interest in the issue.

What will happen if the public lose their trust in the palliative care provided by doctors? Some say it is beginning to happen already. Will we find ourselves standing at the end of Mr Smith’s bed, with no option but to perform the blood gases, cannulations and catheterisations that other pathways, protocols and guidelines demand of us? Do we fear that, if we don’t, we will be faced with a family accusing us of hastening a loved one’s end?

The government has recently announced a review into how care is provided at the end of life. As a profession, emotion aside, this should not be seen as a criticism but must be welcomed. As in all areas, practice should be reviewed continually to identify areas for improvement ... after all, why else do we audit? 

For the gold test, I am certain that if I, or a member of my family, were dying I would want the LCP to be employed in the last hours or days of life. And I would most certainly not want the junior doctors caring for me, or my loved ones, to feel pressurised into delivering futile and distressing interventions or treatments.

Zoe Greaves is a South Tees foundation year 2

*Patient name and identifiable information has been changed

The BMA medical ethics committee strongly supports appropriate use of recognised frameworks for end-of-life care to improve care and support for dying patients and their families. While the review of the LCP is being undertaken, doctors using the LCP may find it helpful to read the Marie Curie Palliative Care Institute position statement and FAQs.

Posted in:  Education and training

Tags:  end of life issues medical education and training

Comments

  • Barbara Hollingworth

    21 January 2013

    I am appalled by the LPC and am so much so that I have made explicit instructios that this must never be applied to me in any circumstances.

  • Gary

    21 January 2013

    Then, Barbara, your final hours will be a miserable battery of pointless tests, interventions and unnecessary agonies, quite in addition to the one-off experience of dying.

    I, for one, am happy for medical professionals to decide my fate, and I trust the kindness and good judgment of young doctors, not editors of the Daily Mail trying to sell tomorrows edition.

  • Debs White

    21 January 2013

    Well said, Zoe. I would be intrigued to understand why Barbara Hollingworth is "appalled".

    I was only speaking to a nursing colleague today who commented that the recent media furore about the LCP has "set palliative care back 10 years". Of course, any pathway, protocol or guideline is only as good as the people implementing it, but what the LCP and similar pathways are about is making those people (generally doctors and nurses) a little better - stimulating them to think carefully about systematically addressing their dying patients' needs.

    Treatment purely to hasten death is clearly illegal and I have never experienced even a suggest of this in 8 years as a doctor. I have, though, seen lots of patients, relatives and clinical colleagues with false hopes vested in modern medicine and a collective denial of the inevitable - so much so that physical, psychological or spiritual wellbeing in last weeks, days, or hours suffers - this is what is truly appalling.

  • Rosemary

    22 January 2013

    Well said Zoe!
    You give me faith in tne future.
    I am a retired doctor and spent many hours on tne ICU so have much experience of death.
    I now chair a hospice.
    The LCP has been given an unndeserved bad press becasue it has been abused by nurses not trained to use it.
    The LCP with compassion can ensure a "good death"with dignity and comfort for relatives

  • Rob

    22 January 2013

    The LCP does not appear a proscriptive as it sounds and appears to be an attempt to treat patients as individuals. That being said, once on it you are unlikely to get better. On reading the leaflets and headlines around the LCP, I was not reassured that the responsible consultant had to initiate the pathway.

  • Tasleema Begum

    22 January 2013

    I agree with the view in this blog. I am a medical student and have seen some aspects of the LCP, particularly in the comunity. We can't avoid death - it will come to us all so the LCP allows doctors and other health care professionals to recognise this and prevent unecessary distress at this already scary time. The principles of the LCP are essential in medicine if we truly care for our patients and any reviews should be welcomed so that we can improve any flaws and combat any fears that surround it

  • Dr Derek Lockstone

    22 January 2013

    I am now retired but was a GP & trainer for 40 years. Good compassionate 'terminal care' was a topic about which I was passionate. The current media nonsence about LCP is ignorant & disgraceful. The problem today is that most people no longer have contact with death & dont understand that it is part of the cycle of life. Zoe you are alright, you care. Always treat your patients as if they were your own parents or children.I would ask all young doctors, students & nurses to read "In the midst of life" by Jennifer Worth [Phoenix]; it says it all.

  • Patrick, rtd

    22 January 2013

    Terminal care remains a path to be explored by patient and carer together until the inevitable occurs. No two patients were ever alike. The LCP requires some training by the looks of it; hopefully there's a consultant-in-charge in each acase! Given those 2 conditions I think LCP may be satisfactory.

  • Nina Leek

    22 January 2013

    I am so grateful that the LCP has been available to three people I have loved very much, my father, mother-in-law, and my husband. My father and mother-in-law died in England, and my husband in one of the top US hospitals. In each case the end was inevitable, the care was compassionate, and death came with peace and dignity for all. I can only believe that the doubters have never had to go through this experience. Thay are fortunate, but totally misguided . Terminal care, done well, is a great gift, offering an opportunity for the patient and family to experience grief, without the fear of how death will happen. We cannot ask for more at the end.

  • Susan

    22 January 2013

    Sadly some elderly patients end up needing the LCP because of the the lack of adequate Nursing care whilst inpatients. Having sat in front of a hospital trust and explained how they failed to provide care and having them agree with me ! The LCP was delivered with care and compassion which if the patient was given that in the first place - would not have needed. Retired registered nurse.

  • Trevor

    23 January 2013

    I too have been dismayed by some of the comments and uninformed attitudes by the press, and some from clinicians whose comments astound me.

    It has been described as "tick box medicine". It is not, it is a checklist to ensure care is properly given - just as I wish the cabin crew of the aeroplane I am about travel in check to make sure that all is done.

    Examples of poor judgement when putting patients onto the pathway are put forward as arguments against the pathway itself. This is a poor argument. Like other medical and surgical procedures, a proper assessment needs to be made to judge whether the patient should have the LCP used to support their care in the first place.

    It is said that the pathway means that food and drink are withdrawn. This is not part of the pathway. It would be questionable whether the LCP should be judged appropriate for someone who was eating regularly anyway. The artificial use of fluids and feeding in someone who is dying when it would make no difference to the outlook or comfort should be questioned.

    It is true that training in the use of the pathway, as in other significant surgical and medical procedures is required, and some organizations fall short of ensuring this.

    The response should not be to withdraw the pathway - this means going backwards to a time when end of life care for most depended entirely on the varying knowledge, interest and experience of the clinical team.

    Rather it should be to continuing to invest time, money and interest into continually improving the Pathway. The team behind it, with much support around the country repeatedly audit, review and advise changes and improvements. This should be supported - or those who cannot support it must come up with something better.

  • Paquita de Zulueta

    23 January 2013

    I am very glad that you desisted from taking unnecessary action that would have only led to distress - probably for the patient but definitely for you, the nurses and the relatives. I teach clinical ethics and have long realised that actually emotions play a very important role in our decision making and professional ethics, hence your comment that empathy and humanity makes us the best doctors is absolutely right. The integration of emotions and ethics is an accepted fact in neuroscience, cognitive science, psychology, and many branches of moral philosophy, yet somehow medicine and medical ethics teaching has not caught up. In fact your thoughts, feelings and emotions must NOT take a back seat, as you say. Instead doctors need to learn to be mindful, self aware, able to tolerate distress and regulate their emotions i.e. be emotionally intelligent, so that they can be present and compassionate towards their patients This is where teaching, training, role modelling, mentoring, leadership, support and reflective group discussions can all help.
    As to the LCP - the problem is that it has become routinised in some settings and sometimes applied without thought or sensitivity. In addition, the imposition of targets for the LCP and the monetisation of the pathway is ethically problematic and has clearly touched a nerve. As Michael Sandel would argue, there are some things that money cannot, or should not buy, and how we look after people at the end of life is one of them. Compassion is not for sale.
    These are issues that merit more thoughtful discussion and dialogue and the Human Values in Healthcare Forum aims to do just that.

  • anthony

    23 January 2013

    My family experience of the liverpool end of life pathway as applied to a close family member was not legal under current british law and totally contrary to the geneva protocols on medical ethics ,established after the abuses after the 2nd world .What is happening in some hospitals is a national scandal.

  • Dr Richard Worth

    24 January 2013

    Zoe clearly has demonstrated exactly what is needed for the management of the dying patient. Professionalism. Well done!

    It was a matter of increasing concern to me, over my career as a consultant physician, to hear or read of patients, who were clearly dying, who appeared to receive inappropriate medical intervention, rather than getting good palliative care. The LCP has been a valuable instrument to enable the healthcare team to consider carefully the needs of patients who are dying. Too often the inevitability of death is not considered. Surely, at the appropriate time, we would all wish for a "good death" for everyone - patients, family and indeed ourselves alike. The LCP helps achieve this in the hospital and community settings but of course like all guidance it has to be applied professionally. This includes the vital need for good communication with all involved.

    The linking of payments for placing patients on the LCP, while understandable to try to improve the level of palliative care, has had the unintended consequences we have seen from sensationalist press coverage and should surely now be abandoned.

    We need to remember the terrible consequences for children of the media furore over MMR, and ensure that a similar fate not become the LCP and the patients who would benefit from it.

  • Dr John Hatfield

    25 January 2013

    I am also a retired doctor,GP- and hospital Dr before for several years. I agree with what the other doctors have said.
    I also agree with Zoe-well done to speak up bravely as a junior doctor dealing with a very sad and difficult situation in medicine,[ but also quite common for medics].
    It is hugely important for doctors to show care,compassion,sympathy, and understanding.
    Perhaps better communication with relatives, and more education,discussion with general public would help?

  • Johnde

    27 January 2013

    The job of the media is to sell papers/increase viewing or listening figures. The job of doctors is to care for patients, to the best of their ability, with compassion, skill and dignity. Well done Zoe.

  • Patricia Daymond

    30 January 2013

    Again congratulations to Zoe, Pacquita And Derek Lockstone for excellent comments. I am still enjoying tutoring undergraduates in Ethics at my local Medical School despite being disabled and 79 next month. I remain glad that I grew up when death was not a stranger either in elderly people or in those of my own age. As Students Robert Coope, a wise old physician encouraged us to sit with our dying patients and even assist the nursing staff in the "laying our" process. However many died with their friends and family sitin around them, the limit on the number of visitors was lifted for the event and clinical intrusion was limited. This experience and events in my own family later served me well. Even this week while teaching I was able to perceive the appropriate empathy and emotional depth in my 2nd year students while discussing a paediatric set case. I congratulated them reassuring them they had the potential to become good doctors. It falls to us to make sure they retain those abilities.

  • Peter Furtado

    23 April 2013

    There was an excellent programme on Radio 4 last Sunday about the LCP and training doctors for end-of-life care. As a lay person I was horrified to learn that even 15 years ago this subject was barely covered in medical school, and that even today it is unevenly covered. I also understood from the programme that even if the LCP may be inadequate in certain respects, it is better than nothing as some other commenters have said here.

    We all have a vested interest in doctors giving excellent end-of-life care, so it seems to me urgent that everyone stops sniping and starts collaborating on agreeing good practice for this area.

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