Select Committee on Health Written Evidence


Evidence submitted by Dignity in Dying (EPR 49)

1.  EXECUTIVE SUMMARY

  1.1  Dignity in Dying welcomes the Health Select Committee's inquiry into the development of the electronic patient record, and is pleased to respond to its consultation. Dignity in Dying works to put patient choice at the heart of all end of life medical treatment decisions, in order to achieve a dignified death for all. We are committed advocates of palliative care and have more than 115,000 members and active supporters. We are the UK's leading provider of Living Wills and regularly advise members of the public, NHS Trusts, GP surgeries, care homes and solicitors in relation to advance and other end of life decisions. We recently produced a "toolkit" to assist healthcare professionals working in the hospital setting when presented with Living Wills scenarios, which was commissioned by the Department of Health.

  1.2  Living Wills, which are referred to in the Mental Capacity Act 2005 as "advance decisions to refuse life-sustaining treatment", enable patients to set out their wishes with respect to life-sustaining medical treatment, in case they become seriously ill and lose mental capacity. Our "Pro-Choice Living Will" is distinctive in its non-ideological approach, which enables patients to make known their wish to refuse or request life-sustaining treatment—although, unfortunately, the latter option is not legally binding.

  1.3  With 64% of deaths now involving an end-of-life decision, (i) a growing number of people are choosing to make a Living Will to ensure their end-of-life wishes are respected. 91% of the British public welcome the inclusion of Living Wills in the Mental Capacity Act 2005 as a move that will "reassure people that their wishes will be respected if they lose capacity". (ii)

  1.4 Living Wills give peace of mind to patients, and clarity and support to their loved ones and healthcare professionals. They prevent unwanted medical interventions and hospitalisations, and can help patients to achieve their wish of dying at home, amongst other benefits.

  1.5  Unfortunately however, some patients' Living Wills are not acted on because the attending healthcare team is unaware of their existence. This is because there is currently no central recording system for Living Wills, to ensure they are drawn to the attention of healthcare professionals at the necessary time. This is a matter of great concern for the public and for organisations and individuals representing medics, older people and people with long-term medical conditions.

  1.6  It is very important that electronic patient records are used to record and alert healthcare professionals to the existence of patients' Living Wills, to prevent these distressing situations from occurring in the future and to protect healthcare professionals from prosecution. Dignity in Dying has the support of Baroness Greengross, the College for Emergency Medicine, the MS Society, the National Pensioners' Convention, Action on Elder Abuse, Counsel and Care, and the British Kidney Patients Association, amongst others in its work to secure this outcome.

  1.7  Dignity in Dying is pleased that this proposal has received support from the Department of Health, and we hope that every effort will be made to realise this important work, and make sure the British public's end-of-life wishes are respected.

2.  INTRODUCTION

  2.1  A recent survey found that 91% of the British public welcome the inclusion of Living Wills in the Mental Capacity Act 2005 as a move that will "reassure people that their wishes will be respected if they lose capacity" (iii). And, with 64% of deaths now involving an end-of-life decision, (iv) the uptake of Living Wills is rising fast. (For more information on the uptake of Living Wills—and on their benefits to the public and healthcare professionals—please see Section 3, below).

  2.2  Unfortunately, some patients' wishes—as set out in their Living Wills—are not acted on because the attending healthcare team is unaware of the Living Wills' existence. This is because there is currently no central recording system for Living Wills, to ensure they are drawn to the attention of healthcare professionals at the necessary time.

  2.3  Failure to act on a patient's valid Living Will can cause great distress to the patient, their loved ones, and the healthcare team. It also puts Primary Care Trusts (PCTs) and individual healthcare professionals at risk of prosecution for negligence, trespass or assault. This is a matter of great concern to many people who have made, or are considering making Living Wills; to organisations working with, or representing, people who have long-term medical conditions, and to a growing number of healthcare professionals.

  2.4  Dignity in Dying believes it is vital that the electronic record system is used to identify patients' Living Wills and alert healthcare professionals to their existence, even in emergency situations. We are supported in this view by many organisations, including the College for Emergency Medicine, the MS Society, the National Pensioners' Convention, Action on Elder Abuse, Counsel and Care, and the British Kidney Patients Association, and by leading experts on health and older people's issues, including Baroness Greengross.

  2.5  We further believe this cost- and time-effective measure carries great support from the public. Many people have told us that whilst they might wish to restrict other personal information on their record, they would welcome its use for communicating the existence of Living Wills to healthcare professionals.

  2.6  Dignity in Dying is pleased that the Minister of State for Quality supports the principle that the electronic patient records should provide the facility for alerting healthcare professionals to the existence of patients' Living Wills. We hope that every effort will be made to ensure that patients' Living Wills are respected, and the Health Select Committee supports this effort.

3.  THE BENEFITS OF LIVING WILLS

  3.1  Many people—particularly older people—are concerned that they should not be subjected to invasive treatment or surgery if, for example, they are terminally ill and have no hope of recovery. A growing number of British people are choosing to make a Living Will because they want peace of mind that they will not receive medical treatment against their wishes, in case they become seriously ill and lack the mental capacity to make their wishes known.

  3.2  Research shows that Living Wills can help patients to prevent unwanted and sometimes distressing interventions and hospitalisation, and enable more people to achieve their wish of dying at home, amongst other benefits. (v)

  3.3  Additionally, Living Wills provide clarity and support for loved ones and healthcare teams as to how they should proceed in challenging and sometimes highly distressing situations. Such clarity reduces family stress at the time of a decision to withdraw life-sustaining treatment, and research indicates that the use of a Living Will also aids the bereavement process. (vi)

  3.4  Research conducted with the British Geriatrics Society found that 56% of the geriatricians surveyed had cared for patients with Living Wills. (vii) (The nature of geriatricians' work means that they are amongst those most likely to be presented with Living Wills). Of those who had cared for the patient at the time the Living Will came into effect, 39% said that they'd changed treatment as a direct result of the Living Will and 78% felt that decisions had been easier to make.

  3.5  96% of geriatricians said that even when the Living Will had not yet come into effect, it still improved discussion with the patient (96%). 76% said that Living Wills improved discussions with relatives (76%).

  3.6  Additional benefits of Living Wills were identified as follows:

    (a)  Living Wills clarify how to proceed in grey areas.

    (b)  Living Wills enable the physician to treat less aggressively.

    (c)  Living Wills promote an earlier trend towards palliative care.

    (d)  Living Wills made doctor-patient discussions regarding the end of life more easy.

    (e)  Living Wills help non-physician staff and relatives reach consensus.

    (f)  Living Wills were also seen to aid communication, reduce paternalism, and increase patient autonomy.

4.  THE UPTAKE OF LIVING WILLS

  4.1  The most recent independent Living Wills survey (ICM, September 2006) found that 13% of respondents had a Living Will, and 23% of respondents over the age of 65 had a Living Will. A further 51% were considering making a Living Will. (viii)

  4.2  This research indicates that the uptake of Living Wills is rising at a fast rate. (In 1995, just 2% of the population were found to have Living Wills (ix); in 2005, this was 8%) (x).

  4.3  It follows that the number of instances where patients' Living Wills are not acted upon (for reasons set out below) will also increase unless the electronic patient records are used to remedy this problem.

5.  PROBLEMS CAUSED BY THE CURRENT LACK OF A CENTRAL RECORDING SYSTEM FOR LIVING WILLS

  5.1  There is currently no system for identifying and recording the existence of patients' Living Wills, to ensure that they are brought to the attention of the attending healthcare team. This means that patients are, in effect, responsible for making their healthcare team aware of their Living Wills at all times. This is both unreliable and risky, as patients may have lost capacity prior to being admitted to hospital.

  5.2  Dignity in Dying is frequently contacted by people whose loved one's Living Will was not respected because the healthcare team was unaware that it existed. This is very worrying, not least because it puts PCTs and individual healthcare professionals at risk of claims for negligence, trespass and assault. It can happen for several reasons, eg:

((a)  The patient may have logged the Living Will with the GP in his or her medical records, but this information is not passed on to the hospital when the patient is admitted in an emergency (or non-emergency) situation.

    (b)  The Living Will is not recorded in a suitably prominent place in the patient's medical records.

    (c)  The new healthcare team is not alerted to the Living Will's existence when the patient is transferred between wards, hospitals or institutions.

    (d)  The patient has need of emergency treatment whilst visiting another part of England and neither the Living Will nor his/her medical records can be quickly accessed.

    (e)  The patient has a Living Will at home which can not be quickly accessed, so the healthcare team proceeds with administering life-sustaining treatment.

    (f)  Regrettably, healthcare professionals still do not check whether the patient has a Living Will.

6.  INCLUDING LIVING WILLS ON THE ELECTRONIC PATIENT RECORDS WILL PROTECT PATIENTS AND PROFESSIONALS

  6.1  All of the risks identified above could be avoided by flagging the existence of Living Wills in the nationally available electronic patient records currently being developed by NHS Connecting for Health, alongside other key information about the patient, eg, allergic reactions to drugs.

  6.2  Recording the existence of Living Wills in the Summary Care Records along with other important medical information would enable healthcare professionals to act swiftly and in accordance with their patients' wishes, even in emergency situations.

  6.3  The benefits of identifying the existence of Living Wills in the electronic patients' records will include:

    (a)  Helping to ensure patients' wishes are respected and preventing prosecutions by increasing ease and speed of access to the necessary information:

    (i)  Recording Living Wills in patients' Summary Care Records would ensure that healthcare teams are made aware of their patients' Living Wills at the necessary time, and can act accordingly.

    (ii)  Recording Living Wills and other "emergency" information in one place would help healthcare professionals to avoid delays whilst they made several checks or calls for different information.

    (iii)  PCTs and individual healthcare professionals would not risk prosecution for failing to take reasonable steps to identify and act in accordance with a patient's Living Will.

    (b)  A cost-free and time-effective project that will avoid bureaucracy and be easy to implement:

    (i)  Additional funds would not be required as the Care Records Service is an existing project and has already been budgeted for (no additional software would required for the same reason).

    (ii)  Living Wills data could be transferred to patients' Summary Care Records at the same time as other data is transferred (as this has yet to happen).

    (iii)  Healthcare professionals would not have to repeatedly record the existence of a Living Will in different medical documents, as it would be logged on the central system.

    (c)  Improving doctor-patient communication and supporting healthcare teams:

    (i)  Prior to adding the Living Will onto the patient's Summary Care Record, the doctor would have the opportunity to review it, and make sure that it fulfilled the criteria set out in the Mental Capacity Act's requirements for valid (and legally-enforceable) Living Wills.

    (ii)  The doctor could also use this opportunity to suggest ways to improve the Living Will and make it more clear or more applicable to medical scenarios which might arise.

    (iii)  Living Wills work best when they are used as an aide to ongoing doctor-patient discussion regarding the patient's prognosis and values. Bringing the doctor and patient together in order to discuss and record the Living Will on the patient's Summary Care Record would have the additional benefit of helping to improve the patient's understanding of different end-of-life scenarios, and the doctor's understanding of both the patient's values, and how he or she would like to be treated in different end-of-life situations.

  6.4  Identification of Living Wills on electronic patient records should be voluntary rather than mandatory, in accordance with the Care Record Guarantee. Due to the obvious benefits of including Living Wills on the electronic patient records, and based on our conversations with people who are concerned to see their Living Will is respected, Dignity in Dying envisages that a significant proportion of people with Living Wills would make use of this option. However, professionals should of course be encouraged to make reasonable efforts to check whether a Living Will exists if it does not appear on the Summary Care Record, in accordance with the Mental Capacity Act.

  6.5  Healthcare professionals who have a conscientious objection to undertaking an activity with respect to a patient's Living Will should act in accordance with the Mental Capacity Act Code of Practice and BMA guidelines.

Dignity in Dying

March 2007

REFERENCES (i)  Seale, C. "National survey of end-of-life decisions made by the UK medical practitioners", Palliative Medicine 2006; 20: 1-8.

(ii)   "Living Wills", ICM Research, 2006.

(iii)   "Living Wills", ICM Research, 2006.

(iv)  Seale, C. "National survey of end-of-life decisions made by the UK medical practitioners", Palliative Medicine 2006; 20: 1-8.

(v)  Degenholtz H B, Rhee, Y, Arnold R M. "Brief communication: The relationship between having a living will and dying in place", Ann Intern Med 2004; 141: 113-117; Schiff R, Sacares P, Snook J et al, "Living wills and the Mental Capacity Act: a postal questionnaire survey of UK geriatricians", Age and Ageing 2006; 35: 116-121.

(vi)   Tilden V P, Tolle S W, Nelson C A, Fields J, "Family decision making to withdraw life-sustaining treatments from hospitalised patients", Nursing Research 2001; 50 (2): 105-115.

(vii)   Schiff R, Sacares P, Snook J et al, "Living wills and the Mental Capacity Act: a postal questionnaire survey of UK geriatricians", Age and Ageing 2006; 35: 116-121.

(viii)   "Living Wills", ICM Research, 2006.

(ix)   Donnison, D and Bryson, C, "Matters of life and Death: attitudes to euthanasia", in Howell, R, Curtice, J, Park, A, Brook, L, and Thomson, K (eds), British Social Attitudes: the 13th report, (Aldershot: SCPR Dartmouth, 1996).

(x)   "How to have a good death", ICM Research, 2005. NB Dignity in Dying believes this growing interest in Living Wills has been fuelled in large part by debate generated by the Mental Capacity Bill, and subsequently the Mental Capacity Act 2005, which has increased public awareness of end-of-life options.





 
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