july 2013 friends those of you who knew robert, he exited last night and everything went according to plan. he rang me yesterday afternoon and i was able to tell him how much i admired his courage, his humility and his determination and wished him bon voyage. i rang the hotel this morning to let them know and they were grateful. he gave me permission to publish his final statement on my website. he went on his own terms, quietly and with dignity. we can be proud of him and our organisation for making it possible. x johannes

NOTES TO ASSIST IN PREPARING A RATIONAL DEATH

Death is a normal part of the life cycle. For some people it comes quickly, for others more slowly. Some have time to make preparations and put their affairs in order, others do not. The following notes are prepared to assist those in the first category and are written from first-hand experience. They have been written from the perspective of a single person, living alone, with one person as next-of-kin. I retired as a university Research Fellow and had a forty two year professional career in social welfare provision, planning and research and six years of fulfilling retirement.

These notes are divided into two sections. The first is an extract from my memoir and outlines the reasons why a person decided to terminate their life. The second section deals with some of the practicalities involved in preparing for termination of life. It is hoped that this might provide an initial check list template, which can be progressively added to, and which assists those who have the time to put their affairs in order.

************************************************ A RATIONALE FOR ENDING A LIFE

We live in a secular society and I totally reject outdated religious views about death and dying. There has been a failure by timid governments to legislate for a legally safeguarded framework for end-of-life choice, a reason why I have been a long-time member and supported the actions of both Dying with Dignity Victoria and Exit International.1 I refuse to have my end-of-life choice dictated to by others or become ‘the plaything of clinical and religious institutions.’2 It is past time that death was seen as a normal stage in the life cycle and de-medicalised. As Charlesworth succinctly put it:

I do not exercise my moral autonomy by allowing my life to be dictated by chance and external forces, and neither do I exercise my moral autonomy by fatalistically allowing my death to be dictated by chance or external forces. It is not “playing God” to seek freely to control the direction of my life, and it is not “playing God” to seek freely to control the mode of my death.3

If my death has not been sudden, it has been my intention to make a pragmatic life choice, as a mature and intelligent person, to decide how and when to end my life. ‘I believe that we should die with decency, so that at least decency will survive.’4 It will be at an appropriate time and easier for my immediate family to dispose of my property. I will conclude my life with a quiet sense of overall life fulfilment.

I am content to leave this life…I have had a good life and have this sense I’ve done my bit. There is a sense of completion coming from this experience.5

A directive that my body is donated to Melbourne University, for the purposes of medical research, has been effective since 1964. I have no wish for a funeral,6 only that people who have known me will have their own personal memories of their contacts with me during our lifetimes.

Three factors have guided my thinking and decision-making in the event that I do not die suddenly. First, it will be an appropriate time in the lives of my three nieces for them to be the main beneficiaries of my estate. It has been my wish that my estate is distributed according to my directives and not wasted on potentially inappropriate health interventions or aged care.

Second, with ageing comes the increased possibility of major health issues. I choose to maintain my autonomy and independence before these are lost by an incident, outside my control, which results in my quality of life being severely compromised for a long period of time or permanently. Keeping severely compromised people alive, against their wishes, is immoral and will become an increasing ethical issue and impost on scarce taxpayer dollars as Australia’s population ages. While medical advances offer new technology:

…success is often only ameliorating disease and postponing death, which means a larger share of the population living with the sequelae of disease and into older age with more chronic disease and handicap.7

It is a fallacy that all available medical interventions should be pursued when, for many older people, this only results in unnecessary discomfort and minimal prolongation of life. This direction does not equate with quality of life for many people. I have limited confidence in the health professions abiding by my expressed wishes in medical directives and there is clear evidence that palliative care and pain relief are ineffective in some health outcomes.

The more you learn about modern health care, the more likely you are to end with a healthy scepticism about its potential benefits and harms.8

Third, my decades of involvement in gerontology and social planning leave me in no doubt that health and aged care services will not be able to adequately meet the needs of the predicted aged demographic in Australia. Indeed, these services are already dysfunctional, contracted out by governments, and are sparse, under-regulated and, in many cases, sub-standard.9 For example, I predict the current fad of private enterprise retirement villages will see many become old age slums of the 21st century. The latest report on the state of aged care in Australia reiterates many of the recommendations made in previous reports and will be similarly ignored by time-serving bureaucrats and politicians captured by the private sector.

The system…is difficult to navigate and the quantity of services is limited. Quality can be variable, there are gaps in service coverage and limited choices for care recipients. Pricing, subsidies and user co-contributions are inconsistent and inequitable within and between care settings.10

Some of my friends will regrettably experience first-hand sub-standard aged care in their ageing process and perhaps better understand my thinking. With current government policies, services will only get worse and I have no wish to be a service recipient. 

‘See, it is death, nothing more – an event in life.’11 Looking back, it has been an interesting and generally fulfilling life journey.

These notes?...perhaps they may be of interest to somebody to learn about a path of which the traveller who has committed to it did not wish to speak while he was alive. 12

 NOTES: A RATIONALE FOR ENDING A LIFE

1. Both organisations have websites for information on their activities. There is a large literature on the subjects of death, euthanasia and palliation. For example, Hillman K, Vital signs: stories from intensive care, UNSW Press, Sydney, 2009.
2. Syme R, A good death: an argument for voluntary euthanasia, Melbourne University Press, Melbourne, 2008, p.270.
3. Charlesworth M, Bioethics in a liberal society, Cambridge University Press, London, 1993, p.33.
4. Hammarskjöld D, Markings, Faber & Faber, London, 1963, p.123.
5. Buti A, Sir Ronald Wilson: a matter of conscience, UWA Press, Perth, 2007, p.377.
6. ‘The typical…funeral of today with “cosmetized corpse in an elaborate casket is grotesque, inappropriate & a ridiculous waste of financial resources.’ Mitford J, The making of a muckraker, Quartet Books, London, 1979, p.81.
7. Hall J, Designing the structure for Australia’s health system, Occasional Paper, Academy of Social Sciences, Canberra, 2010, p.5. See also Hillman K, Vital signs: stories from intensive care, UNSW Press, Sydney, 2009 where he states: ‘active treatment in the face of futility will continue to happen, often against the wishes of the patients & their carers and certainly not in the interests of broader society. Almost a third of the health budget is spent in the last few months of life for very little gain – & in many cases a diminution – in quality of life.’
8. Moynihan D & Sweet D, Ten questions you must ask your doctor, Allen & Unwin, Sydney, 2008. 9.An example of poor health services management and outcomes can be found in the National Stroke Foundation audit 2010. 10.Productivity Commission, Care for older Australians, Canberra, 2011, p.xx. 11.Wheatley N, The life & myth of Charmian Clift, Harper Collins, Sydney, 2001, p.610. 12.Markings, p.125

CHECK LIST

1. Location of death This can be done at home or in another place, such as a hotel/motel, the latter to avoid upset to neighbours if they are close by.

2. Notification of death Johannes (human1958@icloud.com) can arrange for someone to telephone the police and hotel/motel the following morning to advise the location of a deceased person. This avoids hotel/motel staff entering a room and finding a deceased person. The matter then becomes one for the police/coroner to deal with. The name of a  contact person, such as next-of-kin or a solicitor, should be left with notes for the police.

3. Note to hotel/motel A bank cheque for the hotel/motel cost, which can be ascertained at the time of booking, can be left in an envelope on the bed, together with any explanatory note the person wishes to make to the Manager. Credit cards should have been destroyed prior to death.

4. Note to police/coroner This can include name, date of birth, contact person, previous or current occupation, burial arrangements, reasons for taking this action, a brief medical history, what liquid or pill was taken (such as Nembutal) and the fact that nobody else was present or assisted. It can also include an explanatory document indicating the reason for death, such as a copy of the memoir extract included in these notes. An information booklet is available from the Coroners Office titled The Coroners Process: information for family and friends.

5. Disposal of body Advice will be received from the coroner when the body is ready for disposal. Arrangements can be clearly set out in notes left for the executor, such as a public or private disposal/burial or cremation/death notices or not. Cheaper one-off payments can be made with an undertaker before death.

6. Advice of death Letters or, in this case a memoir, can be left for the executor to forward to persons nominated. If a funeral is to be held, a death notice for papers and a list of persons to be advised should be left for the executor. A standardised notice can be left for the executor to forward to businesses/organisations advising of death. It should include the name of the deceased person, an account or membership number if applicable, and the contact details of the executor.

7. Will/disposal of property It is important that a Will has been made and clearly sets out how property is to be disposed of. For example, name items and recipients; name the organisation receiving a monetary bequest and the amount being given.

8. Interim finance/payment of accounts An amount can be left for the executor to pay outstanding and ongoing accounts until probate is finalised and property disposed of. In this case, $4000 was left for the executor to meet such expenses. Leave this as a bank cheque, as bank accounts will be closed on notification of death and monies cannot be withdrawn until probate is finalised. It is important that insurance payments are kept current until property is disposed of. Insurance companies also need to be advised if a property is left vacant after death.

9. Property security Arrangements need to be made for a person (often a neighbour) to regularly collect mail and junk mail. This person needs to have a contact for the executor and possibly a spare key to the property of the deceased. Rubbish bins should be cleared and not left outside a property. Newspapers should be cancelled. Lawns and garden need to be maintained for security purposes and to retain the value of the property before disposal. Re-direction of mail to the executor can be made with the post office or a postal box retained/closed. It is advisable not to have a ‘for sale/lease’ notice board placed on the property grounds until all items in the property have been disposed of/relocated. If security light switches are left on when the property is vacant, a person needs to have access to the property to re-set these, as some will stay on after a power failure.

10.Deletion of items A telephone landline/mobile can be disconnected by the provider so that they cannot be used by another person, especially if a property is vacant. Files on a computer/disks should be deleted and an internet connection should be cancelled before death. Files/personal documents may be kept for family/archival purposes and this should be clearly noted. Files/personal documents not being kept should be destroyed. Credit cards and other cards should be destroyed.

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Once again, thank you for your advice and assistance; it has been most appreciated. Hopefully all goes according to plan next Wednesday. As I have said in my letter to my sister and nieces, 'I am perfectly at peace with my decision, which is put well by T.S.Eliot in his poem A song of Simeon:

My life is light, waiting for the death wind, Like a feather on the back of my hand'

I'm glad you contacted immediately, as one of the things to finalise tomorrow is erasing material from my computer and terminating my internet. Every good wish to you  and your partner for the future. Robert.  ____________________________________________________

Robert Lowell (Dr). July 2013. johannes klabbers to robert

thank you robert.

i will remember your humility, your concern for others, and the quiet certainty with which you carried out your plans.

your end will be dignified and you will go on your own terms, at a time of your choosing.

it was an honour to know you and to be able to be of use as you made your plans and carried them out.

bon voyage.

johannes

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