1. Dying with Dignity Susan Wilson GPVTS 24/01/2008 With acknowledgment to Elaine Murphys presentation at RCGP Annual Conference

2. Introduction Suicide Act 1961 decriminalised suicide Suicide Act 1961 decriminalised suicide Failed attempt could no longer be prosecuted 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 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

3. Introduction Human rights Act 1998 states that everyones right to life should be protected by law. Human rights Act 1998 states that everyones 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 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 ones life Challenge by Mrs Pretty lost as refusal to consent to treatment even if death will ensue is not the same as ending ones life

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

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

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

7. Other Countries Switzerland has loophole in suicide laws and includes non-residents 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. 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. Holland and Belgium allow voluntary euthanasia as well as assisted suicide. Also only for residents.

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

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

10. 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

11. 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."

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

13. 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". "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. 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. Its specialist staff all work as volunteers to ensure there can be no conflict of interest.

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

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

16. Steps to Take Member will meet physician who must assess capacity and explore any other possibilities eg analgesia 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) 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 Retain control of the act to the end Average time scale is 77 days Average time scale is 77 days

17. A nurse sits with the patient, but cannot actually help

18. Assisted Dying for the Terminally Ill Bill Lord Joel Joffe 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 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

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

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

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

22. Who wants to die? Unusual few? Unusual few? The 2900 annual double effect deaths (Seale 2004) The 2900 annual double effect deaths (Seale 2004) The Ive had enough doc thousands The Ive had enough doc thousands Diane Pretty Kelly Taylor

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

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

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

26. ?

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