Should there be choice at the end of life?

Recently there has been a cultural shift away from medical paternalism and towards the empowerment of patients to make decisions about their own care. Nowhere is this change more pertinent than at the end of life. More importance is therefore being placed on the requirement for doctors to have the appropriate training and skills to be able to instigate conversations about end-of-life preferences. In order to ensure these preferences are respected it seems likely that systems that record them and enable sharing will need to become more rigorous and widely available.

These developments are being echoed in the Courts. Recent landmark cases have reinforced the idea that sustaining life at all costs is not always what the person wants and therefore not always in their own best interests. When considering judgments around treatment withdrawal, greater emphasis is being placed on obtaining the views of the person themselves and, if that is not possible, the views of loved ones on what they would have wanted.

There is less unity of opinion on the issue of assisted dying. Recent attempts to change the law in Parliament have been rejected and the British Medical Association, Royal College of GPs and Royal College of Physicians all oppose such a move. Yet perceived medical opposition stands in contrast to polling that suggests a large majority of the public want assisted dying to sit alongside other end-of-life choices – and Britons who can afford to have an assisted death at Dignitas in Switzerland go there at a rate of one every eight days.

Around the world an increasing number of jurisdictions have introduced legislation that offers dying people control over their deaths, while at the same time emphasising the importance of increasing access to palliative care. There is a growing body of evidence of how these laws work in practice. However, in the UK many claim that it is not possible to provide greater choice at the end of life without compromising the protection of vulnerable people or undermining the fundamental values of the medical profession.

An upcoming event at the Royal Society of Medicine on the afternoon of the 9th February is now live on the RSM website and will bring together key figures from many sides of these important issues. The aim of the event is to explore how the concept of choice sits within current end-of-life practice and to question whether or not assisted dying is complementary or contradictory to the notion of person-centred care.

What are your views on this important question? Do you think that clinicians sometimes keep some patients alive to suffer too long? Please do add your own comments to this blog as well as come along to the meeting.

Read the article here.

Comments (9) Add yours ↓
  1. Roger Kirby Professor of Urology

    This link illustrates one aspect of the problem and led to litigation against the Trust involved: http://www.bbc.co.uk/news/uk-england-coventry-warwickshire-42240148

    January 3, 2018 Reply
  2. Roger Kirby Professor of Urology

    And these cases illustrate how difficult it can be for coroners to deal with these situations:

    This case from the Isle of Wight involved a suicide by a man with Motor Neurone Disease – the man’s son for was investigated under suspicion of assisting his suicide. The news coverage features a fairly lengthy quote from Assistant Coroner John Matthews: http://www.islandecho.co.uk/pensioner-ended-life-garage-northwood/.

    This case from West Yorkshire is of a woman with terminal cancer who suffocated herself when her husband was out walking their dogs, the coverage includes a quote from the Coroner Roger Whittaker: http://www.examiner.co.uk/news/west-yorkshire-news/former-mirfield-mayoress-gillian-lockwood-kaye-4972970

    This example, of a women with MND who ended her life with her husband’s knowledge (but not his assistance) doesn’t include any information on the inquest but does show the impact on loved ones: http://www.telegraph.co.uk/sport/cricket/8513580/Chris-Broad-interview-I-would-have-liked-to-have-held-my-wifes-hand-as-she-slipped-away.html.

    And this example – of the suicide of a man with cancer who ended his life, again doesn’t go into the inquest but does show how the lack of choice under the law was a factor in his decision making:
    https://www.thetimes.co.uk/article/mps-brother-left-suicide-note-criticising-assisted-dying-law-kq370vxvl

    We are aware of several other cases of terminally ill people committing suicide that that have not been reported in the media. The think tank Demos also published research on the issue of suicide by people with physical illnesses – part of this research involved viewing Norwich District Coroner’s office suicide inquest records in detail: https://www.demos.co.uk/files/Suicide_-_web.pdf?1314370102.

    January 4, 2018 Reply
  3. Culley Carson Professor of Urology

    This is and will continue to be a hotly debated issue internationally both medically and legally. In the US, there are currently 5 states that permit assisted suicide for terminally ill patients and 6 others where legislation is being debated. The states that permit physician assisted suicide require at least 2 and usually three requests orally and in writing and at least 2 physicians agreeing that the prognosis is less than 6 months of life. The ethics of these decisions continue to be debated but the majority of Americans, I believe, support this process. Indeed when assigned to a vote in Oregon, 60% were in favor of the law. While the Hippocratic Oath states “first do no harm”, comforting and caring for our patients’ needs fit into that part of the Oath. Clearly the restrictions should be strict, but helping our severely ill patients die with less suffering and maintaining their dignity should be a priority.

    January 4, 2018 Reply
  4. Mike Kirby Professor

    The NHS is trying to make progress in this area and the publication of; Ambitions for Palliative and End of Life Care in 2015, was a good start. This document was a framework, developed at a national level, but intended to support local commissioners and providers deliver better palliative and end of life care. The framework provides six ambitions that commissioners and providers should aspire to as well as building blocks to help them make the ambitions a reality.
    The ambitions are all expressed as statements of what good looks like from the perspective of someone at the end of life, and designed to give people as much control as possible over where and how they receive their care.
    Six ambitions to bring that vision about:
     Each person is seen as an individual
     Each person gets fair access to care
     Maximising comfort and wellbeing
     Care is coordinated
     All staff are prepared to care
     Each community is prepared to help

    THis document was followed by:

    The Government’s commitment to everyone at the end of life which was published on 5 July 2016 in response to the Independent Review of Choice in End of Life care (the Choice Review). The Choice Review was the product of extensive public consultation and engagement with charities, patients, clinicians and key health and social care partners by the Choice in End of Life Care Programme Board. The Board was asked to provide advice to the Government on improving the quality of end of life care in England, and set out the elements of end of life care that people most cared about and where people felt choice should play the greatest role.

    The Government’s response to the Choice Review, Our Commitment to you for end of life care set out our ambition for everyone to receive high quality care that reflects their individual needs, choices and preferences. This response set a clear expectation of the standard of care that everyone should be offered as they approach the end of life, and the policy changes necessary to make that standard a reality for all.

    Our commitment to you for end of life care
    The Government response states that as you approach the end of life you should be given the opportunity and support to:
     have honest discussions about your needs and preferences for your physical, mental and spiritual wellbeing, so that you can live well until you die
     make informed choices about your care, supported by clear and accessible published information on quality and choice in end of life care; this includes listening to the voices of children and young people about their own needs in end of life care, and not just the voices of their carers, parents and families
     develop and document a personalised care plan, based on what matters to you and your needs and preferences, including any advance decisions and your views about where you want to be cared for and where you want to die, and to review and revise this plan throughout the duration of your illness
     share your personalised care plan with your care professionals, enabling them to take account of your wishes and choices in the care and support they provide, and be able to provide feedback to improve care
     involve, to the extent that you wish, your family, carers and those important to you in discussions about, and the delivery of, your care, and to give them the opportunity to provide feedback about your care
     know who to contact if you need help and advice at any time, helping to ensure that your personalised care is delivered in a seamless way

    Assisted suicide in my opinion is a long way off in the UK, both euthanasia and assisted suicide are illegal under English law. Assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment. Trying to kill yourself is not a criminal act.
    Depending on the circumstances, euthanasia is regarded as either manslaughter or murder. The maximum penalty is life imprisonment.
    “Active euthanasia” is sometimes used to refer to deliberately intervening to end someone’s life – for example, by injecting them with a large dose of sedatives, and is illegal. Passive euthanasia” is sometimes used to refer to causing someone’s death by withholding or withdrawing treatment that is necessary to maintain life.
    It’s important not to confuse “passive euthanasia” with withdrawing life-sustaining treatment in the person’s best interests. Withdrawing life-sustaining treatment because it’s in the person’s best interests can be part of good palliative care and is not euthanasia.
    This is where we stand at the moment, but the key is acively involving patients & relatives in shared decision making.

    January 4, 2018 Reply
  5. Declan Cahill Consultant Urologist

    Perhaps it can be argued that our most immediate responsibility as doctors is to acknowledge our role in recognising and accepting when a patient is coming to the end of life. Sometimes it is too easy to continue in a quest for active treatment no matter what the realistic chances for that patient and the costs they have to bear in order to undergo said treatment. In order to have those important conversations with patients that enable them to decide how they wish to live the rest of their lives (with ongoing therapies or with good palliative care and a shift of focus), we first need to be prepared to recognise when that point has been reached. It is an important skill in medicine and confidence in one’s clinical judgement and experience is needed to make that call.

    Otherwise, conversations about of end-of-life preferences may be helpful if recorded as suggested. However, preferences may change during life and illness so we need to be prepared to have ongoing conversations in different circumstances: possibly using earlier recorded preferences as guides when consent is no longer possible.

    It is a far greater shift to legalise assisted dying: it needs careful consideration of the relative moral harms to all involved.

    January 4, 2018 Reply
  6. Professor Lynne Turner-Stokes Northwick Park Professor of Rehabilitation Medicine, King's College London

    As ambulance and acute care services become ever more efficient at saving lives, a large number of people who would otherwise have died from catastrophic injury or illness go on to make a good recovery. However, an unfortunate few with very severe brain injury remain in a vegetative or minimally conscious state (VS or MCS).

    By definition, patients in VS and MCS lack the mental capacity to make decisions regarding their care and treatment, and the Mental Capacity Act (MCA) 2005 requires that all such decisions should be made for them on the basis of their best interests, taking into account their values, wishes and beliefs insofar as these can be known. Family members play a critical role in best interests decision-making as, in the absence of clear written instruction, they are often best placed to provide information about the patient’s prior values and beliefs.

    Patients in VS and MCS frequently have medical co-morbidities and, under current national clinical guidelines it is appropriate to consider the ceiling of care as part of clinical treatment planning for all patients with serious illness or injury (https://www.rcplondon.ac.uk/guidelines-policy/prolonged-disorders-consciousness-national-clinical-guidelines.) Key decisions may include whether or not to use antibiotics in the instance of life-threatening infection; cardiopulmonary resuscitation in the event of cardiac arrest; or to escalate to emergency or intensive care settings if they become unstable. Such decisions are made on a daily basis through discussion between the patient’s family and treating clinical team (Turner-Stokes 2017 http://jme.bmj.com/content/43/7/469.long)

    An exception to this clinical decision-making has been the withdrawal of clinically-assisted nutrition and hydration (CANH).
    • CANH is classed as a medical treatment because the enteral feeding tube (through which it is delivered) is a medical intervention, and the feed is medically prescribed.
    • However, it is viewed somewhat differently because, whilst the withholding other interventions may leave the occurrence of a life-threatening event open to a degree of chance, withdrawal of CANH will inevitably lead to death within 2-3 weeks – and many patients in VS or MCS might otherwise live for several years.

    Until recently, Section 5a of Practice Direction 9E of the Court of Protection Rules relating to Serious Medical Treatments (2007) stipulated that decisions about the proposed withholding or withdrawal of CANH from a person in a permanent VS or MCS should be brought to Court.

    Whilst the logic of this was clear, the practicality and ethics left much to be desired.
    • Firstly, it did not seem fair to discriminate against a small group of patients (those with VS or MCS) when there is no legal requirement for Court application for other types of life-sustaining treatment – nor indeed for CANH withdrawal in patients with other conditions.
    • Technically, under the MCA 2005, once a clinical decision has been made that a given treatment is not in the patient’s best interests, continuing to administer that treatment constitutes an ‘assault’.
    • Practice directions themselves do not create any substantive legal obligations, and in this text the recommendation of PD9E was sometimes in violation of the requirements of the MCA (which are obligatory)

    Even when all parties (including the family and treating team) are in complete agreement, the process of obtaining ‘declaratory relief’ from the Court can be time-consuming as well as expensive.
    • A large body of evidence must be assembled for the application including witness statements, reports from the clinical team and independent experts, copies of the medical notes and structured assessment tools etc.
    • The hearing is conducted in public, and is thus dependent on the Court time-table.
    A recent study from the University of York showed that the average time taken for this ‘declaratory relief’ process in a VS case is about 9 months and costs to the NHS about £122,000 (comprising £53,000 in legal costs and £69,000 in ongoing care costs during the waiting period). (Halliday et al 2015 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4636535/)
    • While the court application is in process, clinical teams have sometimes been required to provide further medical treatments that would otherwise have fallen above the planned ceiling of care Kitzinger and Kitzinger 2017 (http://jme.bmj.com/content/43/7/459)

    Recent case law judgements for patients in VS/MCS have therefore now challenged this requirement:
    • In September 217, in the case of M v A Hospital [2017], Justice Jackson held that, having fully consulted M’s family and having acted in accordance with the MCA and with the recognised medical standards, a decision to withdraw CANH could lawfully have been taken by M’s treating doctors without the requirement to bring the matter before the court. http://www.bailii.org/ew/cases/EWCOP/2017/19.html
    • In November 2017, the case of NHS Trust v Mr Y [2017], Justice O’Farrell granted a declaration that it was not mandatory to bring before the Court the withdrawal of CANH from Mr Y in circumstances where the clinical team and Mr Y’s family are agreed that it is not in his best interests that he continues to receive that treatment. http://www.bailii.org/ew/cases/EWHC/QB/2017/2866.html
    (This judgement is, however, subject to an appeal by the Official Solicitor which is due to be heard by the Supreme Court on 29th Jan 2018)

    From Dec 1st 2017, Practice Direction 9E was withdrawn.
    A tripartite group from the British Medical Association, the General Medical Council and the Royal College of Physicians has developed interim guidance regarding good medical practice on decisions to withdraw CANH from patients in permanent VS or MCS following sudden onset profound brain injury https://www.bma.org.uk/advice/employment/ethics/ethics-a-to-z/clinically-assisted-nutrition-and-hydration
    These decisions, however, remain are clinically, legally and ethically challenging for clinicians. Full detailed guidance is in preparation by the same group with a target date for publication in May 2018.

    January 7, 2018 Reply
  7. A Consultant Nephrologist writes... Consultant Nephrologist

    Assisted Dying

    After a professional lifetime spent successfully cowering below the parapet it is time to acknowledge that the ‘assisted dying’ debate will never move on unless we adopt a Kinky Friedman- type approach (look it up) and understand the following inconvenient truths;

    1. The ending of life was handled much better in my student days when the senior and junior members of the medical and nursing staff were able to agree and implement management decisions that really were in the best interests of the patient with a terminal illness.

    2. Patient autonomy is a wonderful thing and we should be grateful to our legal colleagues who have enabled us to broaden the debate about palliative/terminal care to interest groups who have little or no actual experience of the subject.

    3. Palliative care specialists apparently have a greater commitment to conventional religion than do other clinical practitioners.

    4. Additional funding for the expansion of palliative care services is to be welcomed as for any of the other specialties in the struggling NHS.

    5. There are no votes to be had in this debate so that both government and judiciary will continue to kick the issue back and forth in the hope of delaying any real action.

    6. Finally, remember that those who favour assisted dying want it for themselves and those who oppose it want to prohibit it for other people.

    Let the debate continue!

    January 10, 2018 Reply
  8. Steve Norris Patron, The Urology Foundation

    I agree this is a huge issue but sadly one on which opinions are still massively divided and on which Parliament has found it impossible to reach consensus. I personally come down very heavily on a patient – centred approach. My late mother was 93 when she died. She had not been herself since my father died three years earlier. They had been married for more than 60 years and were simply inseparable. Her last two weeks were inevitable. She had water building on her lungs and it couldn’t be moved. But in her last two or three days when she was in a semi-coma she was in obvious distress. Her breathing was heavily laboured and her discomfort was very clearly evident. I was fortunately able to discuss her condition with the young SHO in charge of her care. I asked if it was possible to relieve my mother’s suffering and reassured her that I was asking in full knowledge of the consequences. My mother was given diamorphine. Her breathing normalised and she was clearly in much less pain. She died two days later. I know we did the right thing. Had that medication not been applied she might have survived another 24 or even 48 hours. Hours of pain and discomfort which she did not deserve. I remember reading that the NHS spends on average 90% of what it will spend on you in your whole lifetime in your last 18 months. Whether or not that’s factually accurate I’m not sure. But what I’m much surer about is that while all such decisions require agreement from all concerned as to the course to be pursued the interests of the patient either as expressed in some prior way by the person themselves or as interpreted by family members should carry substantial weight. There was a time when doctors had these decisions taken from them because they simply didn’t have the means to preserve life in the way that they now do. But what is becoming clearer by the day in the 21st century is that it has never been more important for society to recognise that it is in the interests of patients as well as their doctors for us not to strive officiously to keep alive those who we should allow to die peacefully, painlessly and with dignity. .

    January 11, 2018 Reply
  9. Louise de Winter The Urology Foundation

    There is a lot of wisdom in the comments above, both from those working within the medical profession and those who have experience at the patient-end. If only it was easy to recognise the point at which medical intervention would be a cruelty rather than a blessing. The trouble is that that point is never uniform or universal. It is obviously easier if the patient is of sound mind and can express their wishes but there are real concerns around how one treats those who can’t. Declan Cahill makes some very good suggestions about not being afraid to have those discussions with patients on an ongoing basis. As a lay person, I found Atul Gawande’s book, ‘Being Mortal’ makes for very interesting reading in this area and sets out the case for why, in certain circumstances, doctors should stop treatment and that we should start to accept our own mortality. Of course none of this answers the legal issue or conundrum about whether assisted dying should be legalised. However, when we have cases of currently fit and able people taking their own lives early, because they know that in time they will be unable (and they do not wish to incriminate a doctor or a loved one), there is something seriously wrong that needs to be addressed.

    January 11, 2018 Reply

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