Living can be a full time preoccupation these days.
Alex is anxious about the kids’ lunches, torn school uniform and the rash on the cat. Teenage Roy is torn between sporting practice, hanging out with mates and updating his new My e-Health Record. Jace is juggling part-time jobs with uni studies and keeping up with friends.
Elena and Jorge are busy juggling work rosters (one FIFO), paying off the mortgage, keeping up with a parent in hospital and finishing off a gardening project. Laurie is battling telecommunication hiccups between his new NBN connection and an ageing computer that keeps hanging – whilst trying to juggle medical appointments and an aching body.
Raelene is having trouble with her knees, but is still determined several days a week to visit her frail husband who has several chronic conditions which limit his mobility and they are gradually getting used to living apart after so many years together.
Is it little wonder that people tend to put off making a will, or writing up an Advance Health Directive? Or talking with a close family member about how they’d like to be treated in the event of a catastrophic event seriously injuring them and leaving them unable to speak for themselves?
Late last year the Report of the Joint Select Committee on End of Life Choices in WA, My Life, My Choice, drew attention to general community reluctance to contemplate our own mortality or to make plans relating to our future deaths. Similarly, hesitations amongst health professionals to talk about death and dying with their clients were noted with concern.
Surely within the church we should take notice of these and various other significant observations and recommendations that have been brought forward by that Parliamentary Committee after more than a year’s consultation among the general public and specialist medical personnel. Christian heritage and theological study and reflection give us plenty of material to draw upon and hopefully our community life could facilitate safe environments for discussion on these sensitive issues. We need to do it for our own sakes, but through our school and other community connections we could do more to help other people give informed and supported attention to various aspects of end of life possibilities and practicalities.
The report gives an informative outline of palliative care and emphasises its importance in providing medical, social and practical support to help people living with life-limiting conditions or illnesses have the best quality of life that is possible. It need not be restricted to the terminal phase of an illness. I agree with the calls for enhanced resourcing of palliative care services across the state, for this holistic service blending medical care with lifestyle and spirituality will surely continue to be required by our ageing population.
None the less, the Inquiry heard professional and personal accounts that indicated that there was still a small section of the population for whom palliative care does not provide adequate comfort and support prior to their death. Whilst the extent of this is disputed by various bodies, the committee was convinced that this is a real and valid area of concern. It is urgent to find alternative options of care for this small cohort of people in extreme distress.
As a Christian I am committed to encouraging families, friends and health facilities to provide the best quality care for all people. This includes those living with restrictive disabilities or conditions as well as everyone going through their final years of life.
I am also prepared to admit that some people living through late stage illness and suffering may want the power to request steps be taken when they reach a critical point of distress to gently bring their life to a close in a safe and peaceful setting. Preferably this can also enable loved ones to say their goodbyes and be present right to the end if they choose to provide supportive company.
People with a neurodegenerative illness, such as Motor Neurone or Huntington’s Diseases may be aware that their illness is likely to lead to the loss of their capacity for independent movement or ability to speak or swallow or even breathe one day – even whilst retaining mental alertness. Whilst encouraging family and community care for these people right to the end of their natural life, it seems to me legitimate for our civil society to make provisions for some of these people if they choose to, to determine while they are alert and able to communicate clearly, at what point they want to have medical assistance that would enable a peaceful pharmaceutical intervention to close the agony of the uncertainty and fear that they may have been living with for years.
Opponents who label this as ‘killing’ seem to me to be ignoring the facts that this is only made available in response to a voluntary request from a person who needs to be of sound mind and who has gone through several safeguard steps of professional consultation and review prior to such a procedure being provided. It is done as an act of respect for the individual living with the disabling condition and it is done in a way that promotes compassionate caring throughout this phase.
Many people call for the freedom to do this from a secular humanist point of view. I believe it can also be supported within a Christian perspective, acknowledging the rights of other people to make this choice, but also believing that it can be considered acceptable for people who believe in God and trust that the good Lord is with us through times of final frailty or suffering as well as in the unknown beyond after death.
Whilst clear and accountable safe guards need to be in place, they should not be so demanding that they create excessive time delays or limitations to being practical and realistic within our wide state.
Drawing on research, the Inquiry estimated that about 10% of suicides in WA are the result of distressed people who have been living with a terminal or seriously debilitating chronic illness.
“The prohibition of a peaceful, assisted death has driven some terminally or chronically ill individuals to suicide by violent means.”
This creates further ripples of distress among first responders, family members and emergency response workers who have been involved afterwards. Additionally, some people who attempt to end their own lives under such circumstances survive and may have even more restricted or distressing conditions to live with from then on.
After extensive investigations and considerations of international experiences, the Inquiry has recommended “That the Minister for Health ensure the eligibility requirement in the [proposed] legislation include that the person is experiencing grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to the person.”
I support these criteria for competent adults and pray that the expert panel being led by Malcolm McCusker QC, the former Governor, will find effective words and procedures to draft a bill for Voluntary Assisted Dying that can be debated with a strong chance of being acceptable to the government, and a majority of people in the parliament and the community. Protections for medical personnel and family or friends who are involved in good faith in any such death are also to be included.
In the face of likely vocal opposition from many conservative voices within the West Australian Christian and some other religious communities, I would encourage Christians to avoid knee jerk reactions to claims of doctors and nurses being turned into killers rather than carers. People on both sides of the argument still value the sanctity of life and work towards compassionate care for all people.
The full report of the Inquiry can be found on the WA Parliament’s website and it is worth reading for its personal stories and comprehensive analysis. It includes a minority Report from one of the members of the Committee who strongly differed from some of its recommendations. Clearly, a wide range of community views for and against were considered by the Inquiry, and this diversity remains within the broad church and community.
In a society where hot cross buns and Easter eggs have become popular consumer pleasures weeks before the poignant solemnity of Good Friday or the joy of the Risen Christ on Easter Sunday, let’s do more to let the Good News of Easter influence our conversations about living positively even within the shadow of death. That can also enrich our acceptance of and preparedness for dying, however and whenever that may come to us or our loved ones or neighbours.
Ken is a Chaplain at Royal Perth Hospital, and his own father died of mesothelioma.