- Living while dyingby Wendy G
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Reflecting on (2nd place, Story of the Month)
Living while dying by Wendy G
Story of the Month contest entry

Perhaps I am too cynical. I used to be very trusting. Nothing has happened – yet. But to me it is very clear that we are at the top of the slippery slide and about to come zooming down. I know we are “behind” other countries in this matter, but I do not see the need to catch up, just for the sake of keeping up with present world-wide trends.

I took extensive notes from the Webinar on Wednesday, and participated in the Zoom discussion which followed. At the end, as I reflected, I felt very alone, and that my opinions and thoughts were, or would be, considered as either invalid, outdated, or irrelevant. 

I am a Palliative Care volunteer, and we exist as a support group for people who are in the process of dying in the near future, generally within twelve months. Our aim is to work alongside the specialist Palliative Care doctors, nurses, and social workers to help maximise quality of life for clients and their carers.

The medical people attend to pain management issues, and the volunteers form close relationships with personal support for clients to live as well as possible in terms of life quality, for their remaining time.

This includes offering respite to their carers, taking the client to appointments – or simply out for a coffee if they can manage this, or a drive by the river or lake to enjoy the beauty and serenity of nature. It’s whatever they wish to do. Sometimes we do craft with them, or read to them, or simply just chat. At times they share feelings with us, simply because there is a sense of freedom in sharing with some-one a little distanced from their situation, neither medical personnel nor family member.

I am presently making photo books with them, to be given later to family members. This is a joyful experience as they become engrossed in hunting out favourite photos and enjoy reliving happy times – and telling me their life stories. It is a pleasurable way to spend time between medical appointments.

In general, Palliative medical staff are few in number, with a heavy workload. It is not an easy career choice. Our local (quite large) hospital does not even have a Palliative Unit yet, where people may die in a comfortable private room with family around their bedside. They may be in a shared room, with little privacy. Palliative Care is not well-funded.

Yet everyone who has needed the Palliative Service has been pleased with the cheer and comfort which we offer. Without exception.

Hence I feel that this next step offered by Health, which passed legislation last year, and will come into effect in late November, is a retrograde step. The consequences are predictable but not able to easily be wound back.

I am speaking of Voluntary Assisted Dying (VAD), whereby adults who are expected to die within six months (or twelve months for neurological illnesses such as Motor Neurone Disease) may apply to receive and access a locked box (with key) containing a medication which will terminate their life at a time of their choosing. They may self-administer the medication or ask for an “Assisting Practitioner” to administer it (a select few doctors, trained in this specific area of assisting people to die).

The applicant must be of sound mind and not under pressure. Who determines if they are of sound mind? That was not revealed during the Webinar. Presumably the General Practitioner. However, the GP is rarely consistent for a patient for any length of time. I myself have had six within six years, as they move to a practice closer to their home, go overseas, take maternity leave, or move back into the hospital system. How well do they really know the client?

Who decides that the patient is not under any pressure from family or others? The patients only need to be made to feel they are a burden by very subtle means, to feel uncared for, unwanted or neglected. This is in itself a pressure.

People who are dying must apply for VAD themselves – yet many who might need this option are too ill to apply, by the time they have realised and accepted that their disease is terminal and that their prognosis is short.

After they do receive approval, (and there is a deliberate delay mechanism, so the decision is not a rushed or impetuous one), are they physically able to unlock a box with a key and self-administer the drug? Not if they have motor neurone disease, almost certainly. Is there an Assisting Practitioner at call? In their area?

We Palliative Care volunteers will be asked to offer brochures explaining the process, along with our other brochures outlining supports. These brochures will explain that they now have a choice about dying. I believe that at present, the client must initiate “the conversation”, not the Palliative Care volunteer.

It seems to be contrary to what we feel called to do. When there is appropriate pain relief, and appropriate quality of life, why is this option needed? If the client is still in intolerable pain, then the Palliative Specialist Medical team needs to adjust what they are administering, and its frequency.

My concerns extend further. In this age where “Discrimination” is the catchcry, how long will it be before a younger person claims this right, and requests the legislation to be more inclusive? If an “adult” is specified to be “18 years or older”, then VAD discriminates against younger people.

It also discriminates against those with mental illnesses. They are ineligible at present. How long before the legislation is changed, so that mental illness is on a par with physical illness?

It discriminates against those in rural and remote areas. Will the legislation change so they can access the medication without having an Assisting Practitioner leading them through “the journey”? Will it become the responsibility of Tele-Health?

I am also concerned for the severely disabled, such as the young non-verbal man for whom I am guardian. His prognosis was always uncertain; he was not expected to reach adulthood. Without appropriate care he would have fitted the criteria. Will the law be changed down the track, so that a guardian may decide to end the physical suffering of someone who is severely disabled, on his behalf? If so, where does that end? Not all guardians are committed to ensure their person’s wishes are followed. Furthermore, who decides the level of disability for an expendable person, beyond which potentially a guardian could access VAD on his behalf?

I fear where changes in legislation such as these above-mentioned situations might lead. Changing the law would give “equality” and "equity" – except that some can neither understand, nor express their wishes. It would certainly save the government considerable sums of money to not have to fund the intensive care requirements of very ill people or severely disabled people. I am wary of such motives.

Sending out a box with a key, even with the cost of all the necessary steps before approval is offered, will certainly be less expensive to send than to improve palliative facilities and staffing measures, and maintain life for longer. Need I say more? Will our Palliative Services be cut back further? Without the availability of quality palliative care, more people may choose VAD as a viable option.

Many of these concerns fall into the “What-if …?” basket. Yet our society has changed dramatically, and I do not trust the judgments of those with legislative powers.

Perhaps my greatest concern and regret, as I reflected later, is that I was startled that God is not considered in all of this. He was not mentioned – ignored, irrelevant, or non-existent! Yet all such legislation is values-based. It shows how dramatically our society has changed in recent times. It was not so long ago that everyone – believer or not – used to consider that the timing of one’s death was by the authority of God, or some “higher power” or being. We are moving to a new norm.

The desire to be fully independent from God, to have complete freedom to make our own choices about “our” body, is foreign to authentic Christian experience and doctrine. The original sin was exactly this desire to be independent from God, to make one’s own choices, and to be free from His authority.

I speak as a Christian and make no apology for that. This post may be controversial, and I accept that.

However, I believe that we are given life and purpose by Him, and that our times are in His hands. He alone has the authority to finalise our time on the planet He created. Ignoring Him, asserting our “rights” and choices, is akin to not acknowledging who He is and His right to give and take life. Whether we believe in Him or not, we will one day acknowledge Him.

Having said that, I know I may at the end of my time be crying out in pain for Him to take me. He will, but in His time, when the time is right. People have always managed throughout all these centuries to die without the convenience of this option. We were told that simply having the box at hand in case it was needed, offers sufficient comfort and reassurance.

There are some, of course, even some people known to me, who have chosen to end their own lives, and I do understand, at least in part, the pain, physical and emotional, which drives them to do this. I grieve that they had such despair and hopelessness.

But there is another way, and that is to draw on God’s reassurance, rather than the reassurance of a life-ending box stored in their home (which brings another set of problems regarding security).

God promises to never leave us, to provide grace, comfort and strength as needed, to carry on when life seems impossible, and to die in the assurance that we are held in His loving arms. Jesus said, “I will come back and take you to be with Me,” and to me that choice is the better one. We don’t then get tangled up in the various shades of grey which will inevitably follow this legislation about Voluntary Assisted Dying.

We can trust God with our living, and with our dying.


Author Notes
Note: I did not express my Christian viewpoint at the time. I simply raised questions about the process, during the Zoom session, what I perceived as its weaknesses, and the potential problems. Every such piece of legislation must be influenced by ethical and moral values.
These were my reflections after the event.
John 14: 3 I will come back and take you to be with me, that you also may be where I am.

2 Corinthians 12:9 My grace is sufficient for you, for My power is perfected in weakness.

Philippians 4:6-7 (English Standard Version) Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Joshua 1:5 I will be with you. I will not leave you or forsake you.

Note: There are about 66 verses in the Bible which mention that God will be with us, and will never leave us, nor forsake us.


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