Submission to the Commission on Assisted Dying from

Healthcare Professionals for Assisted Dying (HPAD)

(10.30am Wednesday 23 March 2011)

1.1 Introduction
Healthcare Professionals for Assisted Dying (HPAD) is a newly-formed group of healthcare professionals which was launched in October 2010 and now has almost 400 members. The activities of HPAD are coordinated by a Steering Committee (See Appendix 1), supported by an Advisory Committee. The group was established following an approach to Dignity in Dying (DiD) by Dr Ann McPherson and Professor Joe Collier (now HPAD Chair and Deputy Chair respectively). Dignity in Dying provides administrative and financial support to HPAD. While sharing the same vision, HPAD and DiD are intellectually independent.

As a group HPAD believes that the right to assisted dying for mentally competent adults with terminal illness who seek help should, within safeguards, be enshrined in UK legislation. We also believe that to deny such assistance is cruel and inhumane. 

2.1 HPAD's Vision and Mission Statement
HPAD believes that healthcare professionals have a duty of care to their patients, which informs our belief that people should not have to suffer against their wishes at the end of life. Alongside access to good quality end-of-life care and the right to refuse medical treatment, we believe that terminally ill, mentally competent adults should have the choice of an assisted death, subject to legal safeguards.

As members of caring professions we do not think that some terminally ill people should be forced through a lack of safeguarded choice to travel abroad to die. Healthcare professionals should be able to openly discuss all appropriate options with their patients at the end of life, and doing so would better protect potentially vulnerable people from abuse.

We believe that the law must change and that end-of-life decision-making should be guided by evidence and fact, rather than by unsubstantiated fears.

2.2 Mission
We strive for greater patient choice at the end of life and believe that medical professional (representative) bodies, such as the British Medical Association, should not oppose change that puts the wishes of individual patients first. As healthcare professionals ourselves, members of HPAD (a campaign group) believe that we have a voice that deserves to be heard. Specifically HPAD wants:

2.2.1
to change medical culture. We recognise that dying is inevitable and is part of life. For those with terminal conditions, the dying process is not a failure of the healthcare team or the patient – but it does become a failure if the patient suffers an undignified death. Moreover, since dying in these circumstances is not a failure, help in dying should be thought of as assisting dying and not as assisting suicide.

2.2.2
to change the law. Healthcare professionals can indirectly hasten death through the withdrawal/withholding of treatment or through the principle of ‘double effect', but direct and deliberate assistance to die, at the patient's request, is illegal. The law must change to provide greater choice at the end of life, ensuring that within safeguards the wishes of terminally ill, mentally competent adults are respected.

2.2.3
to change clinical practice. Assisted dying should be just one of many options at the end of life. It should be available to complement other end-of-life care, as it does in other countries that have legalised and regulated assisted dying. Those wanting an assisted death should be supported by their healthcare professionals to die when and where they choose, within safeguards.

3.1 HPAD's responses to the questions posed by the Commission
Although HPAD is a young group, it has already established consensus policies based on views expressed in its mission statement, and on positions developed by members of the Steering and Advisory Groups in meetings, surveys, discussions and publications. With this in mind we set out below our responses to the questions (numbered 3.2 – 3.10) that the Commission for Assisted Dying posed when inviting us to give evidence.

3.2 Under what circumstances should it be possible for people to be assisted to die?
Any person over the age of eighteen who is intellectually (mentally) competent and is terminally ill should be eligible for help in dying (an assisted death) if they so request, subject to safeguards. In this we distinguish between assisted dying, which should be legalised within set criteria and safeguards, and assisted suicide of non-terminally ill people, which should not.

Definitions of terminal illness vary, but we would accept one based closely on that in the Assisted Dying for the Terminally Ill Bill, and so: an inevitably progressive illness which, in the opinion of the attending and the consulting physician, cannot be reversed by treatment and is likely to result in the patient's death within a few months.[1]

When someone is terminally ill and they seek assistance to die, they wish to control the manner and timing of a death that would otherwise be unbearable for them. This is a decision in which they are substituting a good death for a bad death, a decision made by the patient that we see as a positive step rather than reflecting failure. When someone is disabled or incurably ill but not dying, and seeks help to die they are seeking an assisted suicide because they deem the quality of their life to be intolerably poor.  HPAD's campaign is for the legalisation of assisted dying only. 

HPAD's position is consistent with public attitudes.  Opinion polls show that support for a change in the law drops significantly from around 80% support for people who are dying to have the option of assistance to die [2], to around half that for people who are disabled or have incurable conditions. [3]

3.3 What system, if any, should exist to allow people to be assisted to die?
Following discussion with a practising doctor, and after verification by a second and independent doctor of the patient's wishes, health status (nature of illness, effectiveness of care provided), voluntariness, and mental competence (see question 3.2), and after undertaking any other checks required by the law, the original doctor would prescribe the (lethal) product for the patient to self-administer. The product would be dispensed to the patient either through the doctor's surgery, or through a hospital or community pharmacy. Accordingly, those wanting an assisted death would be supported by healthcare professionals to die when and where they choose.

By way of added safeguards, we envisage the law would include requirements for referral to another expert (such as a psychiatrist) or an expert body, in cases where there were doubts about the patient's capacity, and/or the voluntariness of their decision. The law would also include clear instructions on the process for requesting an assisted death, on the recording of information, and on a waiting period (say 72 hours) between the doctors' checks and the moment when the patient receives the prescription. It would be important that all of these procedures could be expedited if circumstances demanded.

3.4 Who should be entitled to be assisted to die?
As is written in our response to Question 3.2, entitlement to be assisted to die should be accorded to any person over the age of eighteen who is mentally competent and is terminally ill if they so request, subject to safeguards.

3.5 What safeguards should be put in place to ensure that vulnerable people are neither abused nor pressured to choose an assisted death?
Safeguards are essential to ensure that vulnerable people are neither abused nor pressured to choose an assisted death. In each instance, the presence of such safeguards (the absence of abuse or pressure) would be established by the clinician, working with any other persons designated in law, when he or she assesses the patient's clinical status and mental capacity. Suggested safeguards include:

• Two doctors working independently checking (certifying) the patient's mental capacity, clinical status, voluntariness, and prognosis.
• Referral to a third independent doctor, such as a psychiatrist or other appropriate expert to check (certify and countersign) mental capacity and motivation for the decision (effectively checking that the patient has made the decision voluntarily and has not been coerced or pressured).
• Referral to a palliative care expert if there is any suspicion that motivation might arise out of a lack of access to care or pain relief.
• A waiting period, of say 72 hours, between qualifying for assisted dying and receiving the prescription, to guard against impetuous decisions.
• Strict monitoring and collection of all paperwork involved to ensure physicians, pharmacists and others are following the law and due process. 
• Formal annual reporting of all patients who have requested assisted dying and of the outcomes of these requests.

It would seem reasonable to base these safeguards on those already used in other jurisdictions, together with those used in our jurisdiction in other areas of medicine that raise questions around patient protection and autonomy.

3.6 What changes in the law, if any, should be introduced?
The law must be changed to allow clinicians (and other appropriate healthcare professionals) to discuss assisted dying fully with patients and also to allow doctors to prescribe to patients the product that they will need to self-administer, subject to safeguards.  It should be noted that ‘To change the law' is one of HPAD's three objectives.

HPAD is aware that in some circumstances the patient (for example those with physical disability or impaired vision), may need help in taking the product. The Assisted Dying for the Terminally Ill Bill (2005) included a clause that in the case of a patient who cannot orally ingest the product, doctors could provide a means of self-administration of that product, which would enable the patient to end their own life. This seems an eminently sensible approach. Whatever approach is taken, it is important that any new law does not discriminate against those terminally ill, mentally competent adults with physical disabilities by making it more difficult for them to be helped to die.

We look forward to learning the Commission on Assisted Dying's views on these matters.

3.7 How are health and social care professionals affected by the current legal position (including the DPP's prosecuting policy) on assisted suicide?
The current legal position, including the DPP's policy, means that there is an important domain in healthcare, i.e. end-of-life choices and concerns, which health and social care professionals cannot discuss fully with their patients.

At a time when information can, for example, be given by others and can be obtained from the internet, HPAD sees it as irrational that those with medical experience and expertise, and who may know the patient well, should be expressly excluded from having such discussions. Information given online is available with no safeguards or protection. Assistance to die given by loved ones in certain circumstances has been effectively decriminalised but may be dangerous and may have negative effects for both the assister and the patient.

In contrast, the fact that doctors cannot even discuss patients' desires for an assisted death under present guidelines seems to work against doctor-patient trust and the general principles of the End of Life Care Strategy [4] of open discussion of death and fears related to death and dying. In effect, the law interferes with the doctor-patient relationship and as such a doctor cannot help or comply with patients' choices when they might most want help. Indeed, when they are at their most vulnerable, patients are not protected.  In addition to being forbidden to discuss assistance, our members feel that by being unable to help people to die we are failing terminally ill patients who seek assistance. To us, such denial seems cruel and inhumane.

3.8 How might the legalisation of some form of assisted dying affect professional practice in healthcare, social care or palliative care?
One of HPAD's three objectives is ‘to change clinical practice', so necessarily we believe that clinical practice must change to accommodate the legalisation of assisted dying.  It is important to remember that assisted dying would be just one of many options at the end of life. Accordingly it should complement end-of-life care, as it does in other countries that have legalised and regulated assisted dying.

It is alleged that assisted dying will stunt the development of palliative care. However, the evidence from Oregon, Belgium, and the Netherlands where assisted dying is legal, has shown that in such jurisdictions palliative care actually flourishes. [5] [6] [7]

In a related area it is argued that where there is first-rate palliative care, assisted dying is redundant. In HPAD, we feel strongly that this is not so - it is well recognised that some patients suffer despite the best palliative care.

At its simplest, discussion about assisted dying would require a change in practice. Momentous changes have been integrated into clinical practice before, as for instance with the legalisation of suicide and abortion. But these changes were achieved and to good effect. A need to change practice should not be seen as a bar to changing the law.

HPAD also believes that any change in the law should include conscientious objection clauses (see paragraphs 3.9 and 3.10.3).

3.9 How might the legalisation of some form of assisted dying affect relationships amongst health and social care professionals?
One of the objectives of HPAD is ‘to change medical culture', so necessarily we believe that there will need to be changes in the medical culture of individuals and groups when legalisation occurs. It will be important that differences of opinion should not interfere with the workings of clinical teams, or undermine the legal rights of patients. Strongly held convictions will need to be respected, as they are in the provision of abortions or the dispensing of emergency contraception, but access to assisted dying should always be safeguarded. Where such issues arise the patient would necessarily have to be referred to doctor willing to help.

3.10 What might be the possible impact (either positive or negative) of introducing a legal regulatory framework for assisted dying in the UK on: 

3.10.1 - Individuals generally?
With regard to individual patients we believe that many who are terminally ill (see 3.2) will wish to be able to discuss end-of life choices and some will be relieved to have the option of availing themselves of an assisted death. Furthermore the introduction of a safe, regulated system for requesting and receiving assisted dying should prevent people from attempting suicide alone; from procuring suicide information from disreputable sources; and from travelling overseas in order to be assisted to die. We predict that under the new legislation there will be an improvement in the doctor-patient relationship.

3.10.2 - Particular social groups, including patient groups?
With regard to patient groups we believe that most will welcome the right of terminally ill patients to discuss end-of-life choices with healthcare professionals. They will also be relieved that patients will, within safeguards, be able to avail themselves of an assisted death if that is a patient's wish. To be clear, HPAD only supports the legalisation of assisted dying for terminally ill, mentally competent adults. We do not campaign for a change in the law for wider groups such as disabled or elderly people who are not terminally ill. There is no evidence that limited legislation covering terminally ill adults would have a negative impact on these wider groups.

3.10.3 - Health and social care professionals and medical practice?
With regard to health and social care professionals we believe that eventually most will welcome the ability to discuss end-of-life choices of terminally ill patients, and will be relieved that within safeguards they will be able to assist patients to die if that is their wish. However there will be concern amongst some, and arrangements will need to be made to allow those with strongly held convictions to opt out (with conscientious objection not limited to doctors but also available for all those working in healthcare settings). The conditions and arrangements for opting out will need to be set out clearly in the legislation to ensure that any patient requesting assisted dying, and whose doctor conscientiously objects, is not disadvantaged.

Some fear that assisted dying will erode the trust between doctors and patients. HPAD believes that properly implemented assisted dying using good communication skills will enhance the relationship. This is supported by a survey of seven European countries, which found trust between patients and doctors was highest in the Netherlands (where assisted dying is permitted). [8]

3.10.4 - Society more broadly?
There will be some limited opposition but society overwhelmingly supports assisted dying for terminally ill adults. Moreover, when UK society looks back at the current arrangements it will see them as cruel, inhumane and indefensible. We believe strongly that legalising assisted dying for terminally ill, mentally competent, adults within strict safeguards will benefit society more broadly by allowing greater openness in discussing wishes and fears at the end of life, and by providing better protection for vulnerable people than that offered by the current law.

Furthermore, research shows that illegal voluntary euthanasia is happening now without regulation.[9] Making assisted dying legal would allow the process to be controlled, open and audited. By removing secrecy, the provision of assisted dying would be much more safely and equitably available than at present.

[1] Select Committee: Assisted Dying for the Terminally Ill Bill (2005) HL Paper-86, Volume 1 Report

[2] McAndrew S (2010) Religious faith and contemporary attitudes, in Park A, Curtice J, Thomson K, Phillips M, Clery E, Butt S (eds) British Social Attitudes: 2009-2010. The 26th Report London, Sage: 87-113

[3] Clery E, McLean S, Phillips M (2007) Quickening death: the euthanasia debate, in Parks A, Curtice J, Thomson K, Phillips M and Johnson M (eds.) British Social Attitudes: the 23rd report – perspectives on a changing society London, Sage: 35-53

[4] Department of Health (2008) End of Life Care Strategy DH

[5] Ganzini L et al (2002) Experiences of Oregon nurses and social workers with hospice patents who requested assistance with suicide New England Journal of Medicine 347(8): 582-8

[6] Bernheim J (2008) Development of palliative care and legislation of euthanasia: antagonism or synergy BMJ 336: 864-867

[7] Economist Intelligence Unit (2010) The Quality of death: Ranking end-of-life care across the world. A report from the Economist Intelligence Unit Economist Intelligence Unit

[8] Kmietovicz Z (2002) R.E.S.P.E.C.T. – why doctors are still getting enough of it BMJ 324 (7328): 11

[9] Seale C (2009) End-of-life decisions in the UK involving medical practitioners Palliative Medicine 23: 198-204

Appendix 1

Steering committee

• Dr Ann McPherson CBE (Chair)
• Professor Joe Collier MD FRCP (Deputy Chair)
• Sir Iain Chalmers
• Harriet Copperman OBE, SRN
• Sir Terence English
• Dr Isky Gordon FRCR; FRCP
• Professor Philip Graham FRCP
• Dr Evan Harris
• Ms Karen Sanders MA(London), RNT, RGN
• Professor Ray Tallis BM BCh MA FRCP, F Med Sci, FRSA
• Dr Peter Townsend
• Professor Charles Warlow
• Dr Graham Winyard CBE FRCP FFPH

Advisory committee

• Jill Highet, RGN (Ret. CNS Palliative Care)  
• Ms Gay Lee BA MMedSci RGN (Palliative Care Nurse)
• Dr Richard Lehman MA, MRCGP
• Dr Elisabeth MacDonald FRCR MA Consultant Emeritus Guys Hospital
• Dr Colin Murray Parkes OBE MD FRCPsyche
• Dr Richard Scheffer
• Dr Richard Turner MB ChB FPHM MB