Death with dignity:

the debate in England

Dr Anne Slowther

Associate Professor Clinical Ethics

Outline

• What does dignity mean in English health care?• End of life treatment decisions for people who lack

capacity.• End of life treatment decisions for people who have

capacity.• Interesting comparisons and inconsistencies in the

legal approach.• Where we are now.

Granada 2009

What is dignity?

• The quality or state of being worthy of esteem or respect.

• ‘Dignity in Care’ campaign by the Department of Health– To promote the concept of dignity in all aspects of health

and social care. – Concept includes notions of respect, autonomy, privacy and

self worth.

• Is dignity the same as autonomy?• What else does it entail?

Granada 2009

EOL decision making when capacity is absent

• Early cases in English law relating to children– Focus on futility of treatment– Degree of suffering which continued treatment

would entail– Early cases medical opinion held sway– More recent cases rake more account of parental

views on child’s quality of life– Greater recognition that quality of life assessment is

in relation to the particular child rather than a generic concept

Granada 2009

EOL decision making when capacity is absent

‘‘It is impossible to put a mathematical or any other value on the benefits. But they are precious and real and they are the benefits, and only benefits, that M was destined to gain from his life.’

Justice Hoffman Re MB [2006] EWHC 507 (Fam) para 101-2

Granada 2009

EOL decision making when capacity is absent

• The landmark case of Tony Bland (1993)– Young man in disaster at a football stadium– Suffered sever hypoxia and ensuing permanent

vegetative state– Physicians requested declaration from the court

that withdrawal of tube feeding and hydration was lawful

– Parents supported request

Granada 2009

EOL decision making when capacity is absent

• The landmark case of Tony Bland (1993)– Final judgement was House of Lords– The law Lords found that:

• Artificial nutrition and hydration are medical treatment• The sanctity of life principle is not absolute in English

Law• Withdrawal or withholding of life sustaining treatment is

lawful if continuation of treatment is not in the patient’s best interests

Granada 2009

EOL decision making when capacity is absent

‘‘An objective assessment of Mr Bland’s best interests viewed through his eyes would in my opinion give weight to the constant invasions and humiliations to which his inert body is subject; to the desire he would naturally have to be remembered as a cheerful, carefree, gregarious teenager and not an object of pity…’

Lord Bingham Airedale NHS Trust v Bland [1993] AC 789

Granada 2009

EOL decision making when capacity is absent

• The Mental Capacity Act 2005– Applies to age 16 and over– A person is assumed to have capacity unless it is

established otherwise– Unwise decisions do not prove lack of capacity– Capacity must be facilitated– An act done or decision made on behalf of a

person who lacks capacity must be done or made in his best interests

Granada 2009

EOL decision making when capacity is absent

• The Mental Capacity Act 2005– Decisions to withhold or withdraw life sustaining

treatment can be made if it is in the patient’s best interests but must not be motivated by a desire to bring about the patient’s death.

English law makes a distinction between intending to bring about death and acting in a way that death is a foreseeable consequence.

But ? BlandGranada 2009

EOL decision making when capacity is absent

• Summary of English Law• The decision must be in the person’s best interests• Best interests is wider than just pain and suffering• The decision must not be motivated by a desire to

bring about death• Withdrawing and withholding treatment are classified

as omissions of treatment rather than actions (an important distinction)

• Artificial nutrition and hydration is medical treatment

Granada 2009

EOL decision making when capacity exists

• Contemporaneous decisions by patients– A person with capacity can refuse any treatment even

if the refusal will result in her death– Treating a person who does not consent is a battery

(assault) and liable to prosecution

Ms B v An NHS Hospital Trust [2002] EWHC 429 (Fam) 2002)

Granada 2009

EOL decision making when capacity exists

• Contemporaneous decisions by patients– A person does not always have a right to

request/demand treatment if a doctor does not consider it to be in the patient’s best interests

Burke, R v General Medical Council & Ors [2005] EWCA 2005

Granada 2009

EOL decision making when capacity exists• Conflict between individual interests and societal

interests‘The patient’s interest consists of his right to self-determination – his right to live his own life how he wishes, even if it will damage his health or lead to his premature death. Society’s interest is in upholding the concept that all human life is sacred and that it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount.’

Airedale NHS Trust v Bland [1993] AC 789 p112

Granada 2009

Advance directives

• Governed by the Mental Capacity Act 2005– Apply to over eighteens– Must be valid and applicable– Refusals of life sustaining treatment must be

• Written signed and witnessed• Must specify that it applies to life sustaining treatment

Granada 2009

Advance directives

• Note the MCA specifies advance refusals of treatment

• A person does not always have a right to request/demand treatment if a doctor does not consider it to be in the patient’s best interests

Burke, R v General Medical Council & Ors [2005] EWCA 2005

Granada 2009

Summary of the law

• Capacitous choice should be respected.• But requests for treatment do not always have to be

complied with• A valid advance refusal is the same as a capacitous refusal

and must be respected.• If the person lacks capacity the decision must be in the

person’s best interests.• Best interests must take account of the persons past and

present wishes, beliefs and values (MCA section 4(6))• Decisions must not be motivated by a desire to bring about

deathGranada 2009

Acts/Omissions distinction

• Two contrasting cases– Ms B (2002) refuses life sustaining ventilation,

physicians required to withdraw treatment

– Diane Pretty (2001) wishes assistance to help her die, anyone providing assistance liable to prosecution under the Suicide Act of 1961

Granada 2009

Acts/Omissions distinction

‘It did not appear to be arbitrary for the law to reflect the importance of the right to life, by prohibiting assisted suicide while providing for a system of enforcement and adjudication which allowed due regard to be given in each particular case to the public interest in bringing a prosecution, as well as to the fair and proper requirements of retribution and deterrence.’

European Court ruling in Pretty

Compare with Lord Donaldson in BlandGranada 2009

Acts/Omissions distinction

• Deliberately performing an act that brings about death is unlawful

• Omitting to perform an act (in this case withdrawing treatment is seen as an omission) mat be lawful if done in the patient’s best interests

• Patients can refuse treatment with the intention that they die

• Patients cannot request that a doctor performs an act that will bring about death

Granada 2009

Suicide tourism

• Since 2001 115 people have travelled from the UK to Switzerland to end their life

• There have been no prosecutions of family members who accompanied them but there have been police investigations

• Cases have included people from a range of ages and conditions

Granada 2009

Granada 2009

Suicide tourism

• Challenge to the Director of Public Prosecutions to clarify the law relating to prosecution for aiding and abetting suicide in these cases Debbie Purdy 2009

• House of Lords ruled that DPP must specify when he would prosecute in such cases

• September 2009 DPP issued interim guidance

Views of parliament

• Assisted Dying Bill (Lord Joffe 2006)– Legalisation of physician assisted suicide– Criteria included:

• Terminal illness or severe disability with no likelihood of recovery

• Person is not depressed• Person has less than six months to live• Person is suffering unbearably• The person has been offered palliative care• A second physician has examined the patient

Granada 2009

Views of parliament

• Debate focussed on conflict between: – individual autonomy and the right to self

determination– Risks to the vulnerable in society who may be

pressurised into requesting PAS (slippery slope)

• Public opinion divided• British Medical Association voted against

PAS• Bill was blocked by 48 votes

Granada 2009

Views of parliament

• Amendment to Coroners' and Justice Bill to remove threat of prosecution from those who go abroad to support someone seeking deathDefeated by 194 votes to 141

Granada 2009

Postscript

• 2009 Case of woman who drank poison and doctors respected her request not to have treatment to save her life.

• 2009 Survey of UK 3733 doctors regarding decisions involving 2923 patients

• (Seale C Social Science and Medicine 2009; in press)

– 28.9% reported decisions expected to hasten death– 7.4% reported decisions that they had to some extent

intended to hasten death – No increased reporting in patients with dementia or elderly

women (seen as vulnerable groups)

Granada 2009

The story continues....

Granada 2009