Published: 13th July 2009
(CMF's online answers and comments are to be found in red after the 39 specific questions.)
This consultation asks for your views on the draft guidance End of life treatment and care: Good practice in decision-making.
There are thirty-nine questions in the consultation. These include questions about the style and format of the guidance as a whole, the principles that underpin it and the impact of the guidance on doctors' practice. There also questions about specific paragraphs or sections of the guidance, which are either new or which relate to particularly difficult or sensitive situations and decisions.
We recommend that respondents are familiar with the draft guidance in order to answer the questions in the consultation.
There is also a short version of the consultation which asks twelve questions about some of the main issues that arise in end of life care. It is not necessary to have read the draft to answer these questions.
When responding to the consultation, please bear in mind that the GMC has a UK-wide remit and our guidance applies to all doctors on the register regardless of specialty, grade and whether they work in the private or public sector.
In this section we explain what we mean by 'life-limiting conditions' and 'end of life care'. It sets out the types of situations and cases the guidance is intended to cover, as well as flagging up the importance of broader care issues such as palliative care.
Question 1. Do you agree that the Introduction (paragraphs 9-12) sets out the scope of the guidance clearly?
Yes. We especially welcome the broader and more positive focus of this revised guidance, compared with the narrower and perhaps negative emphasis of the previous 'Withholding and Withdrawing Life-Prolonging Treatments'. We welcome the inclusion of 'social and spiritual support'.
Human rights principles and equalities law have particular importance in decisions about end of life care. This section of the guidance is intended to highlight this point. The guidance here is in terms of high level principles. Other parts of the guidance address how these principles apply in practice.
Question 2. Do you think there are other general problems or issues in relation to equality, diversity and human rights that we should flag up in this section?
Yes. Para 14 gives examples from diversity of difficulties accessing good quality care. We suggest adding 'those from faith communities' to the examples of age, disability, and ethnic minority status.
Paragraph 16 sets out the principles which underpin the advice in later parts of the guidance, in particular the section on assessing the overall benefits of treatment options (paragraphs 36-42). It emphasises the presumption in favour of prolonging life and the need to balance this with the consequences for the patient and the patient's own wishes about treatment. We believe that the advice in paragraph 16 strikes a reasonable balance between ensuring:
a. patients receive treatment where they need and want it;
b. patients who are dying are treated with dignity and not subjected to burdensome treatment.
In answering the following question, you may find it helpful to also consider the advice in paragraphs 36-42 of the draft guidance.
Question 3. Do you agree that the advice in paragraph 16 strikes a reasonable balance between these factors?
Yes. We would favour 'motivated by an intention to bring about the patient's death' as stronger than 'motivated by a desire to'. It echoes the legal position so helpfully emphasised in Para 4 (mentioning the law prohibiting killing, including euthanasia and assisted suicide).
This section of the guidance reminds all doctors, even those with considerable experience, about key difficulties in practice that are not always recognised outside palliative care. One well known difficulty is diagnosing how long a patient has to live. Another problem is that many doctors think of palliative care as something that is only relevant to the last days of life. The guidance encourages doctors to think, at an early stage, about the likely progression of a patient's condition and the need to think about and plan for palliative care.
Question 4. Do you think the guidance will prompt doctors to think early enough about the likely progression of a patient's condition and the need to plan for palliative care? If not, please include any suggestions for how the guidance could achieve this.
Yes. We commend the recommendation to discuss widely with relevant colleagues.
Paragraph 22 highlights the need to give early consideration to the patient's palliative care needs, and to consider how to manage any pain, breathlessness, agitation or other distressing symptoms that they may be experiencing. It also gives advice on what doctors should do if they are uncertain about how to meet patients' needs
Question 5. Do you think that the guidance is sufficient to ensure that patients' needs for symptom management and pain relief will be met adequately, regardless of where they are receiving care?
No. Para 22 lists only positive symptoms, but does not list the negative ones of loss, such as loss of sense of dignity, loss of meaning and purpose. These are the main cause of requests for PAS in Oregon, and the agenda of euthanasia advocates. We suggest adding '…other distressing symptoms that they may be experiencing, including symptoms of loss of dignity, purpose and meaning.'
The clinical issues towards the end of a patient's life can be complex, and it may not be possible to arrive at clear decisions without starting treatments which then have to be withdrawn. The scope for misunderstanding (between patients, carers and members of the healthcare team) about the clinical issues is high. This can be further complicated by the emotional distress that patients and carers and members of the healthcare team might be facing at the time. The advice at paragraphs 25-32 is intended to highlight these problems and suggest helpful ways for doctors to respond.
Question 6. Do you think the guidance will lead to more patients, family members and carers receiving the support they want and need when they are coping with complex or distressing information?
Yes. We question whether all of Para 30 is necessary, or whether it merely confuses. Would it be better just to repeat that there is no moral difference between starting a trial and then stopping it (for good reasons) and never starting it in the first place?
Question 7. Do you think that these sections include sufficient advice about good communication and means of supporting patients, those close to them and members of the healthcare team?
We have expanded on existing GMC advice on resource constraints. The guidance sets out what we believe are the key points that doctors should take into account, to ensure that they address the full range of ethical issues in any given situation. Note: this guidance is not intended to cover situations of national emergency, such as a flu pandemic, which is covered by other guidance.
Question 8. Can you think of any other situations or cases that could not be dealt with effectively by following the guidance? If yes, please tell us what these are.
No. Good to be explicit about an area where patients and families are often suspicious.
For some people, it can be difficult to understand or accept that the ethical and legal duty to protect life can be outweighed by other considerations. The guidance in paragraphs 36-42 sets out the circumstances where a potentially life-prolonging treatment might not be provided (expanding on paragraph 16), including towards the end of life when the focus of care should change from active treatment to ensuring that a patient's dignity is respected and they are kept comfortable and their pain and other symptoms are properly managed. Paragraphs 36-42 should be read alongside paragraph 16, which sets out the underpinning principles.
Question 9. Do you agree that this guidance provides a sufficiently clear basis for reaching sound judgements about when to stop or not to start a potentially life–prolonging treatment?
This section provides information about the benefits of holding early discussions about future care, with patients and their families. It highlights the issues we believe patients may want to explore, and points to sources of help for doctors in managing these conversations.
Question 10. Do you agree that paragraphs 43-53 include all of the key issues that are relevant to advance care planning? If not, please tell us what other issues should be included.
In answering these questions, please see the sections in the guidance on clinically assisted nutrition and hydration (paragraphs 83-97) and cardiopulmonary resuscitation (paragraph 98-112), to see how the principles in paragraphs 54-55 are applied in practice in relation to these specific treatments.
This section sets out general principles about how doctors should approach situations where a patient who has become incapacitated had previously requested that a particular treatment be continued in the current circumstances or had made an advance decision to refuse a particular treatment.
In paragraph 55 we address situations where the treatment is already being provided and the patient is a few days/or hours away from death. The guidance provides that it is usually appropriate to stop the treatment (while focusing on meeting the patient's needs for palliative care and symptom management) where the burdens of continuing the treatment outweigh the possible benefits. However, where the patient has previously expressed a wish for the treatment to continue in these circumstances, the guidance says that doctors must weigh up the harm that might be caused by:
a. going against the patient's wishes; and
b. continuing to provide the treatment
in reaching a decision about what course of action would be of overall benefit to the patient.
Question 11. Do you agree that going against the patient's advance wishes to receive a particular treatment should be treated as a potential harm to be weighed with the other factors, in deciding what course of action is of overall benefit to the patient?
Yes. These issues were ultimately well aired in the Burke case.
Question 12. Can you think of any obstacles to following the guidance in respect of particular treatments or in different settings, including where care is provided in the patient's home?
Not sure. Resource issues may be problematical.
Paragraphs 54-61 cover advance refusals of treatment. The advice in this section takes account of differences in the laws and codes of practice governing advance refusals of treatment, across the UK. We have done our best to set out the issues in a clear, uncomplicated way and avoid repeating detail from the codes of practice.
Question 13. Do you think the guidance makes clear how doctors should decide whether a patient's advance refusal of treatment should be acted on?
Yes. In Para 60 we find the word 'realistic' rather too elastic and recommend: 'the presumption should be in favour of providing treatment, if it has a significant chance of prolonging the patient's life'.
This section provides advice on the importance of clear lines of communication between members of the healthcare team about the decisions made and actions taken in relation to patients. These principles apply to all patients but those who are dying will often move between different care settings and come into contact with a range of health and social services where care is provided by multi-disciplinary and multi-agency teams. It is, therefore, particularly important in this context that there is good communication and that lines of accountability and responsibility are clear. The guidance in paragraphs 62-65 aims to address the factors which can help and hinder the provision of good care to patients in these circumstances.
Question 14. Do you think that there are other factors that can help or hinder timely and clear sharing of information between everyone involved in a patient's care?
Not sure. In due time, the NHS IT system could help here. Should the responsibility to enter IT data accurately and comprehensively etc be mentioned specifically? eg Add to end of Para 63: 'You must particularly make sure that all electronic records are clear, comprehensive and up to date.'
This paragraph gives advice about situations where a doctor's personal beliefs (rather than their clinical judgement) conflict with a patient's refusal of treatment or the decision of a healthcare team or consultant not to provide, or to withdraw, a treatment. The guidance makes clear that while a doctor may withdraw from a patient's care in these circumstances, there is an obligation to make sure that arrangements are made for another doctor to take over their role. The advice does not apply to situations where there is a disagreement based on clinical judgement about whether a treatment should be provided (see paragraph 42 of the guidance).
Question 15. Do you agree that the guidance makes clear the circumstances in which a doctor can withdraw from a patient's care where they have a conscientious objection to the withdrawal or withholding of a life prolonging treatment?
Not sure. Surely the guidance (rather than the briefing note here) should make clear the difference between clinical disagreements and personal beliefs/ethical ones? eg Preface Para 67 by 'Leaving differences about clinical judgment aside, if, because of your personal beliefs…'
Question 16. Can you think of any obstacles that would prevent doctors from following this advice in the different settings in which patients receive care?
Not sure. There might be exceptional geographical difficulties. Obstacles are more likely to arise from perceived pressures felt by junior team members, finding difficulty disagreeing with seniors without being discriminated against.
There have been a number of concerns raised with us in recent years about the way some doctors deal with patients' relatives, including bereavement support and death certification, and about encouraging greater sensitivity to cultural and religious practices. The guidance is intended to ensure that doctors properly consider the issues at the appropriate time.
Question 17. Do you think this section gives sufficient detail about the key issues that need to be considered after a patient's death?
Not sure. Should the fact that the doctor's duty of confidentiality continues after death be mentioned specifically in Para 69? 'including the patient's views about sharing information' seems vague, and could be followed by 'and remembering that your duty of confidentiality continues after death'.
Question 18. Do you think the guidance will encourage doctors to raise organ donation with those close to the patient without imposing an obligation to raise organ donation when it is not appropriate?
Yes. However, the wording of Para 71 perhaps fails to do justice to the sensitivities of shocked/grieving families. Could it be prefaced by 'Recognising their vulnerability, you should be prepared'?
The advice in paragraph 72 is based on the understanding that the team providing treatment to a patient will not also be responsible for making any decisions about whether the patient would be a suitable candidate for organ donation.
Question 19. Do you agree that this separation of roles will always be practicable?
Not sure. The separation may not always be possible in terms of clinical knowledge, but must always be present in terms of ethics and law, to ensure fully informed consent.
This section focuses on the particular anxieties and difficulties when making decisions that affect the lives of children and young people, and especially premature babies.
The guidance builds on the advice in 0-18 years: guidance for all doctors (2007), which sets out all doctors' obligations towards children and young people, whether or not they routinely see them as patients. 0-18 years does not specifically deal with end of life decision making but it gives detailed advice on important matters such as assessing capacity, making best interests assessments and resolving disputes. This guidance does not seek to duplicate that advice but provides some additional advice on some of the particular difficulties that arise when decisions are being made for very ill babies or other children and young people. The guidance seeks to highlight both the clinical complexities and emotional difficulties and signpost to other sources of information available to help doctors making these decisions.
Question 20. Do you know of any particular concerns about the treatment of neonates, children or young people that are not adequately covered in this guidance?
No. Does Para 80 'Parents play an important role in assessing their child's best interests' fully do justice to parents' rights and responsibilities? Suggest adding 'Parents have fundamental rights and responsibilities and play an important role' to make this Para seem less medically paternalistic.
Paragraphs 83-97 of the guidance give advice to doctors on meeting patient's needs for nutrition and/or hydration, including by clinically assisted means, for example, through a drip, nasogastric tube or through a 'PEG' or 'RIG' feeding tube through the abdominal wall. It includes advice on assessing needs, providing support for patients to take food and drink orally as well as decisions about whether to provide or withdraw nutrition or hydration provided by clinically assisted means.
There are 9 questions about this section of the guidance.
We have replaced the traditional term 'artificial' with the term 'clinically assisted' nutrition and hydration (paragraph 85) to address the confusion that seems to be caused for members of the public by the use of the term 'artificial' nutrition and hydration. Since neither the techniques/equipment nor the food and water can be accurately described as 'artificial', it seems sensible to find an alternative way of describing the use of tubes, PEGs and cannulas to provide nutrition and hydration. We believe the term 'clinically assisted' makes a better distinction between helping a patient to take food and drink by mouth and using tubes, lines and other clinical interventions to meet patients' nutrition and hydration needs.
Question 21. Do you agree that the term 'clinically assisted' nutrition and hydration is better then 'artificial' in describing the techniques used to feed and hydrate patients who cannot take food or water by mouth, even with support?
Yes. It is a great improvement. We think Para 85 is sufficiently clear for doctors that feeder-cups/spoon feeding are not clinically assisted (they are not 'treatments' but relate to the role of 'carers') but wonder if given the wide lay concern this should also be spelt out in the guidance? eg After the sentence 'Clinically assisted nutrition and hydration includes…abdominal wall.' insert 'It does not include assistance by use of spoons and feeder-cups, which are part of basic care and are not treatment.'
There is some evidence that older patients, in care home and hospital settings, may not get the help they need to enable them to eat and drink. There is also concern that in some cases, where patients are unable to take food and drink by mouth, the possibility of providing clinically assisted nutrition and hydration may not be properly considered.
Question 22. Do you think that the guidance in paragraphs 83-84 emphasises clearly enough a doctor's responsibility to establish whether a patient's needs for assistance with oral nutrition and hydration are being met?
Deciding what forms of assisted nutrition and hydration are appropriate in the treatment and care of an individual patient is often more clinically complex than many people appreciate. In addition, the emotional distress in end of life decision-making can be felt particularly strongly when clinically assisted nutrition and hydration are being considered. This is because some people see these interventions not as medical treatment but as part of basic care. To address these issues, the guidance sets out (in paragraphs 85-87) the clinical uncertainties and other non-clinical factors that can complicate decisions about the needs of individual patients.
Question 23. Do you agree that setting out these complicating factors is helpful?
Yes. Para 87 is probably right explicitly to acknowledge that there are some people who think that even at the very end of life 'clinically assisted nutrition and hydration…should always be provided' but we must all recognise that life has a natural end, and beware of 'vitalism'.
Question 24. Do you think that there are any other factors that should be included in paragraphs 85-87?
Some patients may want to request in advance that clinically assisted nutrition and hydration be provided up until the moment they die, because they see these interventions not as medical treatment that can be withdrawn or withheld but as part of basic care. Paragraphs 54-55 of the draft guidance set out general principles about responding to advance requests for treatment and paragraph 93 applies these principles to clinically assisted nutrition and hydration.
Question 25. Are there any specific considerations for responding to requests for clinically assisted nutrition and hydration that are not addressed by the guidance in paragraphs 54-55 or 93?
Given the importance that many people attach to clinically assisted nutrition and hydration, there are some situations, involving patients who lack capacity to make their own decision, where the public may want additional reassurance that any decision not to start or to continue with clinically assisted nutrition or hydration will be made on a sound basis.
Question 26. Do you agree that paragraphs 90-97 provide clear advice to doctors to enable them to make sound decisions about clinically assisted nutrition and hydration involving patients who lack capacity?
Yes. While Para 94 reflects the legal position about PVS, it does not touch on the ethical aspects of withdrawing food and fluids; the Bland and the few subsequent decisions having left the law 'morally and intellectually misshapen' (Lord Mustill, one of the law lords after they had made the judgment).
Paragraph 91 addresses situations where a patient's death is not imminent (i.e. expected within hours or days) and where, while clinically assisted nutrition and hydration is likely to prolong their life, the doctor judges that providing it would cause the patient suffering which would be intolerable in all the circumstances. The purpose of this guidance is to ensure that the patient's interests are thoroughly considered prior to any final decision about whether to provide treatment.
We expect that such circumstances might arise in relation to, for example, a new born baby with a very poor prognosis who has one or more severe conditions whose treatment involves invasive painful procedures which may be of doubtful overall benefit.
Question 27. Do you think that the guidance would apply in these circumstances?
Yes. The principles are common, and the guidance gives sufficient advice about second opinions and other expert advice.
Question 28. Can you suggest any other situations where this guidance would apply?
Not sure. We would emphasise, as does the guidance at Para 92, that it might be appropriate to continue, eg, subcutaneous fluids, for comfort reasons while withholding more invasive delivery of nutrition.
Question 29. Do you think that the advice in paragraph 91 about seeking a second or expert opinion, is practicable in all healthcare settings?
Yes. Even if no second clinical opinion is immediately available, medico-legal advice could certainly be obtained by telephone from the defence societies, BMA, Royal Colleges, GMC.
This section of the guidance addresses concerns raised by patients and the public that decisions about future cardiopulmonary resuscitation (CPR) attempts may be made without informing or consulting with the patient and/or the patient's family. It also takes account of other public concerns that patients should not be subject to unnecessary, distressing discussions where their wishes are known or CPR clearly would not work. The guidance aims to achieve a reasonable balance between a) informing and b) consulting patients or those close to them about decisions to attempt, or not attempt, CPR.
Question 30. Do you agree that the guidance in this section achieves this balance?
Where CPR has only a very small chance of working and a patient wishes CPR to be attempted, the guidance (paragraph 108) asks the doctor to leave a decision about attempting CPR until the time of any cardio-respiratory arrest. In the event that the patient suffers a cardio-respiratory arrest, a decision would be made based on the patient's condition at the time and taking account of the importance they attach to CPR being attempted.
Question 31. Do you agree this is the right approach to dealing with these situations? Please tell us why you agree or disagree.
Yes. The patient's clinical condition at that moment is critical to allow a judgment about whether attempting CPR would be more likely to be beneficial, or unduly burdensome by anybody's standards.
Working in teams
The guidance includes a number of references to the role of teams in making decisions about end of life treatment and care. It recognises that the care for patients who are dying is often provided by healthcare professionals working in multi-disciplinary teams, and across different healthcare settings, including in the patient's home.
The guidance draws attention to the issues that can arise in relation to teams. These include issues in relation to communication and coordination of care (particularly across service boundaries) as well as the support that teams may need to make complex and often emotionally difficult decisions and to provide support to patients, their families, carers and others close to them.
Question 32. Do you think that there are any important issues about team working in end of life care that are not sufficiently addressed by the guidance?
Not sure. See comment on Q14. Should explicit emphasis be given to the importance of good IT communication?
Question 33. Can you point to any guidance produced by other organisations, or examples of good practice at a local or national level, that it might be helpful to flag up in particular sections of the guidance?
No. Much other helpful material is referenced in the guidance.
We plan to develop some additional materials to accompany the guidance. The purpose of these materials is to help to bring the principles of the guidance to life, for example by using case studies or examples of good practice to demonstrate how the guidance might apply in different practical situations or different healthcare settings.
Question 34. Are there any particular issues in the guidance that you would like to see covered in these additional materials?
Question 35. Can you identify any changes that would be needed in order to meet the standards set out in the guidance? (for example, in service organisation or delivery, or in the resources needed to provide treatment and care to patients towards the end of life)
Not sure. Given the multidisciplinary nature of end of life care, involving health and social services, chaplaincy and the voluntary sector, it is essential that the final content of the guidance is communicated effectively to all other stakeholders, who may themselves need to make substantial changes.
Question 36. Do you think the guidance places sufficient emphasis on the importance of equalities and human rights considerations when making decisions about end of life treatment and care?
Yes. A good balance has been achieved.
Question 37. Do you think that the guidance will have a different impact - either positive or negative - on particular groups of patients? (for example, on the basis of a person's age, colour, culture, disability, ethnic or national origin, gender, lifestyle, marital or parental status, race, religion or beliefs, sex, sexual orientation, or social and economic status).
Not sure. The application of the guidance will obviously affect particular groups more than others – eg the disabled, and those with minority beliefs. The impact need not be negative.
Question 38. We would welcome any additional comments you have on the draft guidance. These may include, for example:
a. anything that is missing from the guidance that you think should be included
b. areas of duplication or where you think the guidance could be shortened
c. whether you think the level of detail in the guidance is about right/too much/too little
The guidance is indeed long, but has to be comprehensive and strike a balance we feel has been achieved of being a 'one-stop shop' that also references adequately elsewhere.
Question 39. Do you have any comments on the consultation documents and/or process to help us improve future GMC consultations?
Yes. It was a long consultation. The login and submission process may deter some who should submit. Allowing multiple members of an organisation to review the consultation together before an agreed submission was not easy.
Philippa Taylor (CMF Head of Public Policy) 020 7234 9664
Steven Fouch (CMF Head of Communications) 020 7234 9668
Alistair Thompson on 07970 162 225
Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 4,000 British doctor members in all branches of medicine. A registered charity, it is linked to about 65 similar bodies in other countries throughout the world.
CMF exists to unite Christian doctors to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.