End of life treatment and care: good practice in decision-making

Transcription

1 Ref: 3809 End of life treatment and care: good practice in decision-making A draft for consultation July 2009 All rights reserved. Third parties may only reproduce this paper or parts of it for academic, educational or research purposes or where the prior consent of Age Concern and Help the Aged has been obtained for influencing or developing policy and practice. Name: Charlotte Potter, Pauline Thompson charlotte.potter@helptheaged.org.uk = Age Concern and Help the Aged Astral House, 1268 London Road London SW16 4ER T F E policy@ace.org.uk Age Concern and Help the Aged Pentonville Road London N1 9UZ T F E info@helptheaged.org.uk Age Concern England (charity number ) has merged with Help the Aged (charity number ) to form Age UK, a charitable company limited by guarantee and registered in England: registered office address Pentonville Road, London, N1 9UZ, company number , registered charity number Age Concern and Help the Aged are brands of Age UK. The three national Age Concerns in Scotland, Northern Ireland and Wales have also merged with Help the Aged in these nations to form three registered charities: Age Scotland, Age NI, Age Cymru. =

2 In this consultation, the General Medical Council (GMC) has offered draft guidance for doctors in end of life treatment and care: good practice and decision-making. This updates and builds on existing guidance Withholding and withdrawing life-prolonging treatments, published in 2002, but also provides advice on end of life care more generally. The GMC provided a detailed list of questions to be answered. Age Concern and Help the Aged offer their responses to the full written consultation as opposed to the short consultation in this document. About Age Concern and Help the Aged: On 1 April 2009 the four national Age Concerns in England, Scotland, Wales and Northern Ireland joined with Help the Aged to create four new national charities dedicated to improving the lives of older people. We speak with one voice on behalf of all older people. We are listening to what older people want as we improve our services and activities so that we can achieve our vision of a world in which older people flourish. We cannot achieve this on our own. We do not just work on behalf of older people, we engage with them in all that we do: listening to what they say, campaigning for the change that they want, providing services where others are not and selling products where the markets have failed. Last year, between us, we reached over five million older people with our services, information and products. We work with partners to ensure that together we can improve the lives of older people. The key partners are the four national charities, all of whom share a name and vision; and the many Age Concerns across the UK, who provide services for older people in their area.

3 Key points and recommendations Age Concern and Help the Aged welcome the opportunity to respond to this consultation. The following summarises our key messages: It would be helpful if the guidance offered greater context about the current developments in end of life care and associated workforce implications as outlined in the recent end of life care strategy. This context could usefully point towards the importance of rounded, empathetic, joined-up care, which is so often lacking for older people and their families. The guidance rightly focuses on decision-making processes in light of changes in legislation, in particular the Mental Capacity Act. However, there is much to be said about the manner in which messages are delivered or consultations are carried out in addition to the content. The guidance currently largely overlooks the importance of empathy and emotional intelligence. Given the fact that a large proportion of complaints about hospitals relate to end of life care, professionals would do well to examine all aspects of their relationship with patients and their representatives or families at the end of life. We make a series of specific drafting comments to clarify various aspects of the guidance. In particular the sections concerning delegated responsibility for decision-making when an individual lacks capacity need to be amended. Our responses to specific questions reflect these recommendations in more detail. 3

4 Questions Question one: Do you agree that the Introduction (paragraphs 9-12) sets out the scope of the guidance clearly? In paragraph 6, two meanings are offered for "you should". This is confusing. It would be clearer if the wording were changed to "you should consider" in those instances where the duty or principle does not always apply. Question two: 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? We recommend that the introduction offers greater context on some of the general aspects of best practice in end of life care, trends and developments in this field and problems faced by specific groups. For example, the guidance should point towards the end of life care strategy and supporting materials, especially in relation to workforce issues. In addition, while the guidance has a necessary emphasis on decision-making processes and frameworks, from a patient perspective what matters is rounded, empathetic and joined-up care. Decision-making without such wider considerations is unlikely to improve the experience of dying for many, which is already a source of distress and in the worst cases complaint for many relatives and carers. It is worth remembering that the Healthcare Commission reported that 54% of complaints about acute care related to end of life care. Should the guidance remind professionals that end of life is a frequent source of complaints? In terms of specific equalities issues, the guidance should highlight the differential experiences of older people such as the fact that they are less likely to have access to specialist palliative care services or die at home. In particular it should highlight the fact that many older people at the end of life will have co-morbidities and therefore healthcare professionals must focus on the person rather than the diagnosis, excellent coordination of care, and enable individuals and their families to have access to emotional and practical, as well as clinical, support. It should also refer to needs of individuals living in care homes. Older people are more likely than younger people to die in a care home and this increases dramatically with age, to 36 per cent of the over-85 group. Yet care staff are often not trained in palliative care, and the home may not be geared up for this. The onset of the dying phase may therefore lead to emergency admission to hospital. This guidance should form one part of the wider efforts both to improve end of life care as a whole and to eradicate discrimination on the basis of age. 4

5 Question three: Do you agree that the advice in paragraph 16 strikes a reasonable balance between ensuring: (a) patients receive treatment where they need and want it; and (b) patients who are dying are treated with dignity and not subjected to burdensome treatment? Yes Question four: 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 Question five: Do you think that the guidance is sufficient to ensure that patient s needs for symptom management and pain relief will be met adequately, regardless of where they are receiving care? The guidance rightly emphasises the clinical aspects of good care and decision making however making someone comfortable through the end of life extends beyond clinical symptoms and pain relief. The guidance should therefore highlight the need to work with a multidisciplinary health and care team to both manage and alleviate symptoms but also provide for wider emotional and social needs which can impact on symptoms. Question six: 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? The first sentence in paragraph 28 needs to be amended to state where there is a reasonable degree of uncertainty about whether a particular treatment will be of overall benefit, and the patient lacks capacity to make the decision and where there is no one with legal authority to make the decision on the patient s behalf, the treatment should be started to allow a clearer assessment to be made While it is important that clinicians deliver all the necessary information to relevant individuals in order to achieve appropriate end of life decisionmaking, the guidance could usefully point to the kind of manner with which such a process should be managed. Clearly the approach of end of life can be a traumatic time for individuals and their families and the manner of communication in addition to content can make a significant difference. Clinicians should display a level of empathy and emotional intelligence in order to assist those involved through the process. Question seven: 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? See answer to question six. The paragraphs could do more to emphasise the need for emotional intelligence. 5

6 Question eight: 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. Given the current passage of the Equality Bill in Parliament and the clear problem of discrimination within the health service on the basis of age, in particular at end of life 1, the guidance should point specifically to the equalities policy and legislation, in addition to human rights. In addition we recommend that the first sentence of paragraph 35 should be amended to state You should not withhold or stop treatment when this would involve significant risk for the patient and the only justification for doing so is constraints on resources. Question nine: 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? Paragraph 37 needs to be much clearer in detailing with whom it should be agreed that treatment would not be of overall benefit. The GMC consent guidance states that a doctor must consider the views of anyone the patient asks you to consult, or who has legal authority to make a decision on their behalf, or has been appointed to represent them. This may be a carer, or where a person lacks capacity an LPA or IMCA. Paragraph 38 should be amended to state that in the case of a patient who lacks capacity, you must follow current law Paragraph 42 may need to say that disagreements may arise between the patient (where they have capacity) and the healthcare team, in addition to those close to the patient. It is important not to overlook the patient s views where they are able to express them themselves. Question 10: Do you agree that paragraphs include all of the key issues that are relevant to advance care planning? If not, please tell us what other issues should be included. We suggest that a bullet point is inserted after bullet point (c) in paragraph 46 along the lines of Whether the individual would consider an LPA for health and welfare and if so, if they would want the attorney to make decisions about life-sustaining treatment In paragraph 49 we suggest specifically stating such as appointing a health and welfare attorney And include a footnote explaining difference between this and a property and affairs attorney. A paragraph should be inserted in line with Royal College of Physicians guidance stating that health care professionals should make reasonable 1 Although 33% of all deaths are people aged 85 and over, only between 9% and 15% of people gaining access to specialist palliative care services are 85 or over - National Council for Palliative Care (2007), Minimum data sets for specialist palliative care,

7 efforts to seek out an advance care plan or ARDT and if one is found review the document with the individual [if they still have capacity] and ensure that it is placed in the medical record [if the patient consents] 2 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, provided that the subsequent guidelines are followed in relation to managing any potential conflict of opinion with the patient s legal representative or carers. 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? We would like clarity in paragraph 59 over whether the term clinical developments refer to developments in the patient s case or general advances in clinical medicine that may mean the patient has a better life before death. Questions 14 to 16: We have nothing to add. Question 17: Do you think this section gives sufficient detail about the key issues that need to be considered after a patient s death? Additional practice to which the guidance should refer includes asking family members if they would like to see the deceased person if they were not present at death and offering to accompany them, ensure carers or close ones have written information on procedures such as collecting the deceased s property, registering the death and arranging a funeral and offering information of contact details relating to bereavement support such as Cruse or local Age Concerns. Questions 18 to 20 We have nothing to add 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 2 Reasonable efforts might include having discussions with relatives of the patient, looking in the patient s clinical notes held in the hospital, or contacting the patient s GP (Mental Capacity Act, Code of Practice, section 9.49). 7

8 Question 22: Do you think that the guidance in paragraphs emphasises clearly enough a doctor s responsibility to establish whether a patient s needs for assistance with oral nutrition and hydration are being met? Adequate and appropriate nutrition and hydration is a serious problem for older people and failure to meet need in this area is an infringement of human rights (article 3 in particular prohibition on inhuman or degrading treatment). The guidance should be stronger in emphasising the clinician s responsibility for this aspect of care. We suggest the following wording: You must ensure that oral nutrition and hydration are being provided in a way that meets the patient s needs, and that any problems (such as difficulty swallowing or risk of choking) are being managed effectively Question 23: Do you agree that setting out these complicating factors is helpful? Yes. Question 24: Do you think that there are any other factors that should be included in paragraphs 85-87? We would suggest referring to other clinical issues such as depression or medication which can cause poor appetite in addition lack of support to eat and drink when necessary as a cause of poor nutrition and hygiene. 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 or 93? No Question 26: Do you agree that paragraphs provide clear advice to doctors to enable them to make sound decisions about clinically assisted nutrition and hydration involving patients who lack capacity? Yes Question 27 to 29: We do not have anything to add. Question 30: Do you agree that the guidance in this section achieves this balance? No. We have heard of extremely harrowing cases where families have accidentally discovered DNAR notices have been placed on patient s notes without consultation. This has led to conflict and distress. While we appreciate that ultimately neither a patient nor their legal representatives nor carers can demand interventions that healthcare staff do not believe are appropriate, it is highly unsatisfactory that clinicians can make an advance decision such as DNARs, without consulting or at least informing relevant individuals. 8

9 Question 31: Do you agree this is the right approach to dealing with these situations? Please tell us why you agree or disagree. We agree that where CPR has only a very small chance of working and a patient wishes CPR to be attempted, the doctor may 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 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? While we realise that the guidance has a necessarily specific focus on decision making processes, we have highlighted already how it would be useful to contextualise the guidance in wider policy developments including the workforce issues detailed in the end of life care strategy. In this way, concerns such as multidisciplinary team working at the end of life, the value of which cannot be emphasised enough, would be raised up front. This would then inform and underpin all actions and decisions of professionals involved in end of life care. Questions 33 to 35 We have nothing new to add. 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? We have indicated specific areas where we would welcome additional focus on equalities issues, given the issue of age discrimination in healthcare and at end of life. However we are conscious that this guidance may be finalised before the passage of the Equality Bill, in which age is included as an equalities strand. Once the Bill is passed, this guidance should include references to the legislation where relevant; at the very minimum the legislation should feature in the legal annex. If the guidance is published before the Bill is passed, it should refer to the bill as future legislation for which clinicians should prepare. 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 or economic status) Too often assumptions are made about older people s preferences or their views are ignored. This guidance, forms part of a drive to eliminate such poor practice. However we have highlighted in answering the questions in this consultation, areas where the guidance could be tightened up and could be a 9

10 useful tool for addressing some of the wider inequalities experienced by older people at the end of life. We would expect the GMC to have a role in monitoring the impact of this guidance as part of the drive to implement equalities legislation. Question 38: We would welcome any additional comments you have on the draft guidance. In paragraph 14 the guidance should be amended to state "the ethical duty on doctors to ensure that all patients must receive the same standard of care" In paragraph 17(b) we suggest the second sentence is reworded to state: The doctor must explain the option to the patient impartially, setting out the potential benefits, risks, burdens and side effects of each option. We suggest the following corrections for paragraph 18: a. There is a specific reference to paragraphs of the consent guidance and include a link b. Change the first bullet point to state: where the patients appear to lack or have limited capacity the doctor must a) establish the level of capacity and follow the law and codes of practice on decision-making with patients who lack capacity to make their own decisions. This may include, for some patients in England and Wales, a requirement to appoint an Independent Mental Capacity Advocate to represent the patient s best interests. c. In bullet point d) we suggest the following wording: Take into account any evidence of the patient s previously expressed wishes such as an advance decision d. Include an additional bullet point at e) stating where there is an advance decision, ensure it is valid and applicable as described in the legislation and code of practice. e. The notes to existing bullet e) requires substantial amendment in order to clarify LPAs. Only a health and welfare attorney /deputy can make health and welfare decisions, and so need to be distinguished from a property and affairs attorney/deputy. In relation to life sustaining treatment a person can grant powers to an attorney to make such decisions on their behalf, if they expressly state this on the LPA form. Doctors must be careful to check this before making assumptions as to the powers of a health and welfare attorney. However a health and welfare deputy has no authority to make a life-sustaining treatment decision. If an attorney or deputy is just covering property and affairs, they are in the same position as any other carer close to the individual they must be consulted but cannot make the decision over treatment options. This is wider than the role of an 10

11 Independent Mental Capacity Advocate (IMCA). A decision maker must take account of reports made by the IMCA in order to take into account the individuals best interests however ultimately it is the decision-makers responsibility to make a decision. f. Bullet point f should be amended to state that an individual should consult with those close to the patient as there is a duty in English law to consult. 11