Introduction and Foreword
“Good surgeons know how to operate, better surgeons know when to operate, and the best surgeons know when not to operate”. Clare Marx, PRCS
Providing end of life care is a duty for all registered medical practitioners. Many doctors and perhaps surgeons in particular find this care a difficult and onerous duty. Instinctively we feel that we should be doing all in our power to preserve life.
Nevertheless, death is finally inevitable for us all and there comes a time when extending life through surgery or other therapeutic intervention is not in a patient’s best interests. Often attempts to prolong life can have a negative effect on its quality. Such considerations are relevant not only for older patients nearing the end of their life. Even when the patient is a younger person, the quality of time they have left may be more important to them than prolonging their life.
What can I learn from this guide?
This document provides advice, guidance and support to surgeons and service providers on many important aspects of end of life care. Most importantly it covers the steps surgeons can take to ensure that patients nearing the end of life experience a ‘dignified death’. It covers a framework for communication and decision making, the important care planning documents in use at the end of life and how to work together as a team to ensure high-quality end of life care.
“To cure sometimes, to treat often, to comfort always”. Hippocrates
I greatly welcome this new guidance from Royal College of Surgeons, applaud its intention and hope it may embolden and resource surgeons to fully play their part in caring for all those in their final years of life. It marks a line in the sand, in recognition of the subtle complexity and importance of care for those nearing the end of their life, and reaffirming the vital and irreplaceable role of surgeons in this care.
Surgeons play a crucial role in caring for people approaching the end of their lives. Whilst patients are under your care, your guidance, your decisions, your technical expertise and your words of support are critical and have a huge impact on the care of people at this most important time. Yet sometimes it is easy to forget the wider context of these decisions within the person’s life beyond the hospital doors, their particular context, personal priorities and their own trajectory of illness. And perhaps on occasions, amidst the importance of correct surgical practice and technical expertise, the human element of care for the person beyond the patient can be overlooked. Your surgical expertise is vital but also your words of comfort and care will be appreciated and remembered for years to come.
Doctors can sometimes see death as failure: but in fact, the truth is that death in itself is not failure but a bad death can be. A surgeon’s care extends beyond his or her technical ability with the scalpel, important as that is, to care for the person behind the patient. This includes guidance as to when surgery is not necessarily the right decision towards the end of life (see Appendix 2) , and when it might be right in the context of palliation or as prioritised by the patient , whilst retaining that sense of perspective, humanity and support that is core to best medical practice.
Why is this so important now? The startling figure is that on average one in three hospital patients are in their last year of life, even though many will not die on your wards, but later at home, care home or elsewhere. About half of all patients die in hospital, most have 2-3 admissions in the final year of life and along with increasing longevity, mortality rates are set to rise by 25% by 2040. This has a real impact on the decisions for optimal care when seen as part of the wider context, not in withdrawing any particular treatments but in determining what may be best for this person to ensure quality of life in their remaining time. It is not about giving them less, but may be actually about offering them more, but different, care. With the end of the single disease era, with increasing longevity, cumulating complexities of frailty dementia and multi-morbidities along with increasing availability of possible interventions, this is a good time to reconsider and reframe care for people in the last years of life and the vital role of surgeons.
The term “end of life care” is defined as care for people in the last year of life, rather than just the last days of life, and this is about 1% of our population as a whole, but 30% of people in hospital. In our experience through our GSF work in over 80 hospitals, every single ward has some patients in their final year of life, with audits showing an average of 9-35% on surgical or orthopaedic wards who die within the year, and about two thirds on care of the elderly, stroke or oncology wards and in community hospitals.
Lifespan now exceeds health span, and although many age wonderfully, for some quality of life can diminish. Peoples’ priorities can change as they near the final stage of their life, with a shifting balance of focus from cure to care, from life- extending heroics to life-sustaining comfort , from ‘what’s the matter with me’ to ‘what matters to me’. With potential over-medicalisation as access to complex interventions increases, we face a new tipping point in care for people towards the end of life, — just because we can, doesn’t mean we should. There is now a delicate balancing act in orchestrating appropriate care, avoiding both over-use of interventions and under-provision of care and support.
So what can surgeons do? A few constructive suggestions are included here and later in this guidance.
Firstly, we need to face mortality, acknowledging that we are frequently dealing with seriously ill patients, many of whom are in their last chapter of life, and that recognising this can be a positive step towards helping them live out this final stage of life as well as possible. Many older people welcome such honesty, gently offered, as their fears may be even worse than the reality, although for others this can be too much to handle and denial can be their way of coping. But it is likely that for everyone, especially younger patients, such reconfiguring takes time to sink in - from being a person who will live forever to someone whose life is limited. If we can be more proactive and recognise potential decline earlier, to allow people (if they choose to consider this) more time and space to realistically clarify wishes, plans and preferences, which might often include less time in hospital and more at home , with consequent economic implications, then possibly better life decisions might be made. It is our experience working with care homes residents, that they would often choose fewer interventions and ‘heroics’ and more comfort care , given the opportunity to express their choice. Studies of renal patients suggest that many prefer to live with ‘realistic hope’ rather than delusions of false affirmations, and such discussions can in fact increase not decrease the sense of hope.
So is it possible to identify patients earlier? Although prognostication is intrinsically difficult and flawed, current evidence suggests it is possible to anticipate decline earlier than we are currently doing and identify more patients in their last year of life, using tools such as the GSF Proactive Identification Guidance. So somehow, wherever possible, (and it is not always possible during the crises of emergency surgery) it would be helpful to identify patients earlier, recognise possible decline, create a ‘pause button’ in the rollercoaster of care and help create space to consider the appropriateness of surgical interventions, enabling patients and families to discuss the best way forward in their final stage of life.
Secondly, earlier identification can lead to more proactive needs-based care, including initiating or signposting these important “advance care planning” discussions of their priorities and wishes, putting the person at the centre of care, to enable them to live out the final stages of their life in the way that’s right for them. This could also possibly prevent some understandable family conflicts and pressures, as some family members urge further surgical treatment at all costs.
These discussions are not necessarily just with you as surgeons - in fact it might be a relief to hear that quite often you might not always be the right people to have very in-depth discussions. Surveys suggest that most people wish to have such discussions within a longer relationship, such as with their GP, physician or nurse involved in their long-term care and when that are back in the safety of their home. However, your recognition of the seriousness of their condition could be the first step in triggering this discussion and alerting others, leading to more open conversations with family, carers, or other healthcare provider, who can help clarify preferences that determine future decision making. But your role in horizon-scanning, initiating and triggering this discussion is of great importance.
Advance Care Planning (ACP) is now an internationally recognised concept and process that is gaining weight in every developed country. The new international consensus definition of ACP helpfully clarifies its aims as being more to do with ensuring people receive care consistent with their values, goals and preferences. Further resources and videos that stimulate discussions can assist e.g. 5 Steps to ACP, Dying Matters and evidence confirms the positive experience of others, reduction of family distress and economic benefits of such advance care planning discussions.
Thirdly, this guidance affirms the continuing role of surgeons even when further surgery is not appropriate, and the need for continued active supportive care of the person. “End of Life Care is everybody’s business” and it is important that surgeons feel confident in their non-surgical contributions and play their part to the full. No longer is it right for a surgeon to pass by the bed of a dying patient because they are under the care of the palliative care team or they feel there is little more surgically that can be done. Where appropriate, this could also include referral to palliative care specialist advice, but if a third of all patients are in the last year of life, most care will be provided by the usual hospital team. In our experience palliative care specialists might only be able to see about 12% of those in their last year of life, whilst about 88% of all hospital patients would be under the care of generalists, including surgeons . Teamwork with nurses and other colleagues and seeking views of the wider MDT are important here . In our experience we find, supported by the wider nursing teams, that surgeons can give excellent care and guidance for people in their last stage of life, recognising the importance of continued care beyond invasive surgical interventions..
And finally, end of life care has been said to be a litmus test for our society. As doctors we meet death and dying more often than most. Premature death can be particularly distressing for all and reducing avoidable deaths will always be critical. We must never deny the possibility of life conserving treatments to people at any age and yet for some the ‘be-tubed, pyjama-ed’ highly medicalised inpatient existence is a diminished life – which option might we consider for our own parents or even ourselves? Maintaining compassionate care, ensuring we bring our humanity to work, can be tough at times but ensures a deeper connectedness and also leads to greater personal and job satisfaction. It is hard sometimes to find the right words, and yet something important can be transmitted in other ways- the personal human touch is never wasted and always valued. Life for many is measured less in quantity of time but more in quality of life lived, and it is our responsibility to ensure this is as good as possible.
In the light of current and future challenges, with a reframed, population-based yet person-centred approach to this area, meeting the challenges of the 21st century, facing our mortality , we can affirm the importance of living well to the very end and when the time comes, dying well too.
This Guidance is a crucial step forward in achieving this.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die” Dame Cicely Saunders
Professor Keri Thomas OBE MB BS MRCGP DRCOG, MSc Pall Med
Founder and Clinical Lead for the National Gold Standards Framework Centre in End of Life Care and Hon Professor End of Life Care University of Birmingham