Dying with Dignity Susan Wilson With acknowledgment to Elaine Murphy’s presentation at RCGP Annual Conference

Introduction Suicide Act 1961 decriminalised suicide Failed attempt could no longer be prosecuted However a person who aids, abets, counsels or procures the suicide of another, or attempt by another to commit suicide, shall be liable on conviction to imprisonment of a term of up to 14 years

Introduction Human rights Act 1998 states that everyone’s right to life should be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court Challenge by Mrs Pretty lost as refusal to consent to treatment even if death will ensue is not the same as ending one’s life

Values All patients are intrinsically valuable, no matter how disabled. A doctor’s role is to strive to improve the quality of life A request to die is a communication that has many different meanings A doctor’s primary role is to relieve suffering, not to preserve life at all costs

Choice at the End of Life Everyone should have a choice at the end of life. Palliative care should be patient-led. End-of-life decision making should be open and honest. Under control of patient. Choice for terminally ill people should include medically assisted dying within strict legal safeguards

British Social Attitudes Survey 2006 – 82% Support ADTI GP Net 2005 – 62% doctors say yes to intentionally hasten death

Other Countries Switzerland has loophole in suicide laws and includes non-residents Oregon, USA has death with dignity act. Only permits assisted suicide and only for residents. Holland and Belgium allow voluntary euthanasia as well as assisted suicide. Also only for residents.

What is legal in UK now? Suicide – have to be able to do it Advance directive to refuse treatment “Double effect” Terminal sedation

Dignity in Dying Campaign organisation (formerly VES) seeking greater choice for patients at the end of their life Feel that choice of when and how to die should be a basic human right

Dignity in Dying “This year [2007] has seen some terrible cases of people's wishes at the end of life not being respected. The fact that over one half of all complaints about the NHS are about end-of-life care is unsurprising. Access to palliative care is a postcode lottery and the service you receive depends on where you live. People with a terminal illness and who are unbearable suffering are denied the right to an assisted death and have to consider an unacceptable, morbid pilgrimage across Europe.” Ashley Riley, Head of Campaigns

Dignity in Dying "The implementation of the Mental Capacity Act in October was a positive step forward in ensuring greater patient choice at the end of life, but the UK still has a very long way to go. Assisted dying should be a basic right for terminally ill, mentally competent adults who are suffering unbearably. Excellent palliative care should be available to all those who need it. More awareness of the importance of advance decisions is vital to ensure everyone has the best death possible."

Dignitas Founded May 1998 Ludwig Minelli First assisted suicide took place in Oct 1998 Clinic in Switzerland but accept non-residents In 2007, 70 Britons travelled there to end their lives

Swiss Law "Whoever lures someone into suicide or provides assistance to commit suicide out of a self-interested motivation will, on completion of the suicide, be punished with up to five years' imprisonment". Dignitas interprets this to mean that anyone who assists suicide altruistically cannot be punished. Its specialist staff all work as volunteers to ensure there can be no conflict of interest.

Steps to Take Join Dignitas as a member (registration fee plus annual membership) Send personal letter of request explaining reasons. Need to include medical file containing diagnosis, therapies and prognosis (medical examination within 2 months) and CV

Steps to Take Dignitas finds a Swiss physician willing to prescribe lethal medication (phenobarbital) Obtain recent copies of all documents (birth cert, marriage cert, divorce decree etc) Once documents are with Dignitas an appointment can be made

Steps to Take Member will meet physician who must assess capacity and explore any other possibilities eg analgesia Individual must be capable of making final act himself (drinking barbiturate solution, self-injecting prepared solution etc) Retain control of the act to the end Average time scale is 77 days

A nurse sits with the patient, but cannot actually help

Assisted Dying for the Terminally Ill Bill Lord Joel Joffe Bill to enable an adult who has capacity and who is suffering unbearably as a result of terminal illness to receive medical assistance to die at his own considered and persistent request

ADTI Bill Would be lawful for a doctor to prescribe medication and provide a means of self-administration (if oral not possible or appropriate) Members of healthcare team to work with the doctor Certain conditions must be satisfied

Conditions Doctor must be informed in a written request, signed by patient, that he/she wishes to be assisted to die Satisfied that patient does not lack capacity Determined that patient has a terminal illness Concluded unbearable suffering Informed the patient Ensured palliative care available Recommend patient notifies next of kin Satisfied that request is made voluntarily Refer to consultant

Problems with the Bill Unwieldy? Too much hassle? Which doctors? Remove illegality of assisted suicide instead Review illegality of intention to kill by double effect if patient states wish to die

Who wants to die? Unusual few? The 2900 annual “double effect” deaths (Seale 2004) The “I’ve had enough doc” thousands Diane Pretty Kelly Taylor

Outcome Lord’s select committee reported April 2005 Called for a debate in next parliamentary session (2004/5 session cut short by election) Report recommended changes to the bill

Changes Assisted suicide and euthanasia dealt with separately Term “unbearable suffering” changed to “unrelievable suffering” Conditions for “assisted dying” should be specific to clinical practice Actual procedures doctors should follow must be clearly stated Lord Joffe to draft a new bill after full House debate

Against the Bill Sanctity of life Erodes doctor-patient relationship Dying is a part of life Erodes doctor-patient relationship Relationship should be open and honest Need to assess capacity MCA requires us to assess capacity anyway Slippery slope Not the experience from other countries Effect on vulnerable groups Patients in Oregon and Holland aged 50s and 60s Palliative care would be better Part of palliative care, provides reassurance

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Summary End-of-life choice is still a contentious issue Not yet in statutes in UK Other countries have different legislation