Interview with Isabel Wright (26 June 2007).

She said, “Why the fuck do you do what you do? Why are you interested in keeping us well? You should be interested in letting us die.” Isabel has an unusual psychology of dependence and independence. And a lot of it is driven by autonomy and loss of independence.26

Foreseeing the trajectory of her decline and corresponding dependency, like a number of interviewees, Isabel used the graphic analogy of ‘wipe my bum’ to describe her ‘line in the

sand’ .27 She related her instructions to her husband and children: ‘I always told them that I

want to keep my independence and that ... when it got to the stage when I had to have someone wipe my bum, I would rather be dead. ' 28 Her husband Peter confirmed that Isabel’s

desire for independence was a motivator for euthanasia:

She’s always been really independent. She doesn’t want to be basically ... a quadriplegic who has to be fed, who has to have her bum wiped. ... She wants her independence. ... when Isabel reaches her point... we’ve got to try and find someone who would help her ... A lethal injection.29

Like Isabel, Lydia Smith ‘would like to have that option if the time came when I felt I didn’t have any quality of life. ’30 When questioned, Lydia defined quality of life as ‘[independence

and being able to enjoy my family. ’31 Her husband agreed and defined quality of life as

‘being able to physically enjoy life as much as she can ... have all senses ... operating, and ... mentally be able to cope and understand.’32 Without the ability to maintain their

independence and freely enjoy the aspects of life that defined them as persons, many patients lost meaning in life.

Thus the fear of dependency operated as a driver for euthanasia. As these patients became increasingly reliant on carers and technological supports to perform the most basic of human functions, they articulated a loss of dignity, a crippling failure of self-identity and loss of quality of life. In their accounts, euthanasia offered relief of that suffering and a means to stop the process of decline.

26 Interview with Thomas Blackburn (7 January 2008). 27 Interview with Isabel Wright (26 June 2007). 28 Ibid.

29 Interview with Peter Wright (6 October 2007). 30 Interview with Lydia Smith (28 November 2007). 31 Ibid.

B Desire fo r Control as a Motivator for Euthanasia

The loss of independence acted as a driver of the desire for euthanasia in a second significant way. Without autonomy over their life conditions, euthanasia offered these patients autonomy over the conditions of their death. Members of the medical team identified this as the desire for ‘control’ and recognised it as the most significant motivator for euthanasia in their patients. As Blackburn stated: ‘It comes back to potency, to having some control over your destiny.’33

The literature confirms that the wish to control the manner and time of death is significantly associated with requests for euthanasia and assisted suicide.34 Dr Blackburn explained:

... there is an impotence to MND. It robs you of your ability, your strength, your speech, your breathing and ultimately of your life. So ... you have to try and give patients a sense of control over that. The last and ultimate sense of control is whether they live or d ie /5

Similarly Robyn Kelly explained:

... MND is something where you lose complete control over your bodily functions, over the timing of your own death ... there are patients who somehow want to hold on to some form of control, even if that ultimately means “I’ll control when I die.” '6

The same dynamic has been noted in other research about euthanasia and AIDS patients, a doctor interviewee observing:

Many patients speak about wanting to end their lives and not infrequently it’s a question of maintaining control over their lives. The great problem with [AIDS] is this lack of control. Their lives are controlled by the disease process and they have to hand over control of their lives to doctors, and his loss of control is a major issue for them. 7

33 Interview with Thomas Blackburn (7 January 2008).

34 See, eg, T Morita et al, ’Desire for Death and Requests to Hasten Death of Japanese Terminally 111 Cancer Patients Receiving Specialized Inpatient Palliative Care’ (2004) 27 Journal o f Pain Symptom Management 44, 49; Robert A Pearlman et al, ’Motivations for Physician-Assisted Suicide: Patient and Family Voices' (2005) 20

Jounal o f General Internal Medicine 234, 237; A Chappie et al, 'What People Close to Death Say about

Euthanasia and Assisted Suicide: A Qualitative Study' (2006) 32 Journal o f Medical Ethics 706; Linda Ganzini, Elizabeth R Goy and Steven K Dobscha, 'Oregonians' Reasons for Requesting Physician Aid in Dying' (2009)

169 Archives o f Internal Medicine 489, 490.

35 Interview with Thomas Blackburn (7 January 2008). 36 Interview with Robyn Kelly (10 December 2007).

37 Roger S Magnusson, Angels o f Death: Exploring the Euthanasia Underground (Melbourne University Press, 2002), 80.

Dr Evans equated ‘dignity in death’ with autonomy and control over the manner and timing of death. He emphasised the importance of providing a patient with ‘the opportunity ... to choose that moment when they can withdraw from therapy, say their farewells, have their

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family with them. They can choose the time and place.’ 1 Patients Who Did Not Desire a Hastened Death

The correlation between desire for control and desire for euthanasia was highlighted by those patients who did not desire euthanasia. The interviews suggested that one of the key reasons for their lack of desire was lower levels of distress or anxiety about their loss of independence. Rather than a need to assert ‘control’ over their circumstances, these patients indicated the opposite: that they had reached a position of acceptance of their loss and limitations.

For example, Bonnie Rycliff opposed euthanasia. At the time of the interview, she had been diagnosed with MND for less than a year and had increasing difficulties speaking, eating, writing and driving. Notwithstanding these limitations, Bonnie told me that ‘I haven’t had

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many difficulties accepting it. ... there is a peace that I have about it.’ This attitude was particularly notable given Bonnie’s personality which her friend and carer, Joan Walker, described as ‘very independent ... [she] has held down a very responsible job...’40 Unlike the patients who also valued their independence but desired the option of euthanasia, Bonnie did not express distress at her increasing dependence. She explained:

I don’t dwell on [it]. I know that it will come and yes when that happens I’ll be facing more than I’m facing now. At the present 1 feel 1 can do things ... but I know that the time will come when I can’t. Until it happens I’m not dwelling on it.41

38 Interview with Paul Evans (18 December 2007).