Voluntary assisted dying in Western Australia — How I struggled, finding meaning and a path forward
Not long ago a person I knew ended their life voluntarily.
This person had suffered under the weight and burden of their disease. And with progressively crippling symptoms and escalating palliative therapy, their last weeks were clearly in sight. So as the end drew near, the decision was made and this person was assessed. Assisted dying was approved and a date was scheduled.
This death hit me harder than I expected.
Within minutes after it happened, most of my team knew. Their phones pinged with a message alerting them that life had ended in this way.
I had just finished seeing a patient in the clinic when Kathy our Clinical Nurse came over to tell me. She put her hand gently on my shoulder, she tilted her head, her eyes meeting mine and asked,
“Are you okay Jonathan? I know you became close and liked them”.
I tried to be brave and initially, I was. But inside I could feel the brokenness of the last few months and the questions already starting to swirl.
“Yeah, I’ll be okay,” I said, lying of course as my eyes found hers.
Kindness was all that I saw. Care for my heart and personhood, knowing how I felt about death in this way and also the person who was now gone. This was a person that I knew whose death had intersected with perhaps the greatest moral change in my medical career — voluntary assisted dying (VAD).
This started a downward spiral that I did not expect. Every time voluntary assisted dying was mentioned, I felt pain, a dullness and ache in the middle of my chest. Psycho-somatic. Of course, it was. This was a big deal! My mind, heart and soul were swirling around together in sadness, grief and uncomfortable uncertainty. This was my calling and I could now see that end of life care in Western Australia had changed forever.
My wife noticed it too. A silent and solemn presence bathed over me that wasn’t usual. My resting comedic self was gone, replaced with a shell of a person trying to comprehend what lay ahead as a Christian Palliative Care doctor.
It didn’t help either that I had been spiritually injured in the last year, which led us to leave our church. I was involved at the highest level and so the spiritual pain that I was experiencing was especially severe and still raw.
My foundation and devotion to God never wavered during this time but the waves crashing over me now were dark, heavy and relentless. My fingers and knuckles were white as I held on to the cornerstone of my life — my faith, which was being severely tested.
The Palliative Care team felt my pain too. I received unsolicited hugs and numerous kind words of encouragement because my demeanour had most certainly changed. I felt disconnected and my spirit was troubled. I was sad, not depressed but sad.
It’s a strange feeling and hard to describe — present but not really. A cup that is always half full despite all the replenishment being poured in. A fog of slowness, like mornings without coffee. A muffled existence in not being able to hear what is happening around you, but being distracted by an uneasy stream of meaningless and worrying thoughts. Nothing was clear except for the pit that I found myself in, struggling to find a ladder of certainty to pull myself out.
I told my team that I would not be able to deal with voluntary assisted dying at this moment and that they needed to discuss cases like these separate from me. I was always going to work in Palliative Care but at the moment, I was most certainly out — I was grieving. I was mourning the loss of my speciality. What seemed like a safe and compassionate calling now felt unsafe to me in the face of assisted dying. Voluntary assisted dying had shifted the foundational sands of the Palliative Care speciality that I knew, and I no longer had firm ground to stand on.
The celebration around me didn’t help either. The media on all fronts broadcasted about what a great advance in patient choice and freedom from unnecessary suffering VAD was. And yes, whilst I understood the celebration, this monumental shift was far from easy for me to rejoice in.
And the one thing I noticed too was that the language around me had changed. This perhaps was the hardest external feature of VAD to deal with. Nothing that was said about assisted dying to and around me was a throwaway line. It all mattered and most of it hurt. I intentionally kept my thoughts to myself out of fear of being further injured in a heated conversation.
It was okay to celebrate and to talk freely about assisted dying but I wanted the public and my medical and nursing colleagues to be mindful of those tasked with bearing witness to this change. Those working in Palliative Care with a conscientious objection such as me and those still battling with their own conscience about what to do next. A change in law doesn’t equal an instant change in heart or practice, this takes time, even if it ever or never changes.
As a close friend and colleague remarked, Voluntary Assisted Dying was a grenade exploding in a closed room of Palliative Care professionals with some doctors and nurses more wounded than others. Oh, she was right. I was wounded, but not mortally. I thought that I could still see a light. But how mistaken I was.
The hospice board agenda was what tipped me over the edge. Every time I read the words “voluntary assisted dying” it stabbed me. I felt it in the centre of my chest. Sharp pain will a dull after tone that lingered a little longer than I expected. It was uncomfortable and I thought I was losing my mind. This type of thing had never happened to me before. Why was this happening?! I screamed inside.
I made a call the next day to our Chair and explained to her I wasn’t okay. She understood immediately. We agreed on a 3-month break and I promised her that I would get help.
When I cried those heavy tears in a psychologist’s room a week later, catharsis from the last year of turmoil was all I felt. I hadn’t shed a tear for all the loss that I had experienced and so each tear that fell was a release and a relief. I had finally given myself permission to grieve the loss of our church and the change in my speciality forever. More tears fell as I was made to recognise that I had done nothing wrong at our former church but rather stood up for justice and walked forward in wisdom and integrity.
As we unpacked what was going on in my life and my thoughts were dissected by an objective observer, my mind unwound and my heart started to feel lighter again. I learnt about infinite worth, the value of integrity and talked openly about the not-so-great aspects of church life.
But most importantly, we discussed voluntary assisted dying as a moral challenge, a significant professional change and a spiritual issue for me to find peace with.
The questions I asked about assisted dying were challenging and of the highest order. I’d never thought about something so deeply before.
“What do I do now with intractable suffering?”
“Do I offer assisted dying to these patients because it is an option?”
“And if I do offer assisted dying, how does this affect my salvation and my relationship with God? Am I doing wrong?”
“What does God want me to do in the face of intractable suffering in Western Australia?”
How do I work and live in line with the Gospel in the face of voluntary assisted dying?
How does the gospel speak into my life as a Christian Palliative Care doctor?
I wanted to do the right thing.
And these were the sharpest points of my thinking, the aspects of assisted dying that worried me. The furthest limits of my clinical practice — the intersection of my faith and calling.
What I am learning about Voluntary Assisted Dying in Western Australia
What I concluded during this period and am still learning was this:
Whilst assisted dying would not be part of the suite of options in my Palliative Care practice, the choice and decision to accept voluntary assisted dying would be my patient’s. It was their decision to make, select as their wish and to move forward with everything that assisted dying entailed. It had nothing to do with me or my failure to provide good care. I could certainly discuss it and outline the process but it wouldn’t be an option that I would reach for.
As a Palliative Care professional, I was called to act with justice, to be merciful and to walk forward in humility — something I shared in my first article about assisted dying.
To act justly, love mercy and to walk humbly” — Micah 6:8
Secondly, I learned that I needed to embrace, process and express my feelings. As a Christian, it is unhealthy to bury your feelings and mindlessly ascribe those things that trouble you away as “God’s will” and not probe any deeper. It is emotionally healthy for all people to explore why your stomach is in knots, why some people or situations make your blood boil and why some aspects of the human condition depress and sadden you.
You are allowed to feel angry and hurt and sad, depressed and fearful — these are normal human emotions that we were created to feel. And with voluntary assisted dying, I was able to make sense of my anger at times and my grief overall and my sadness that our government and society had chosen this path.
I intellectually understood why but I didn’t have to agree and certainly did not need to participate under our law. And as a Palliative Care doctor too, I learned that regular professional supervision and having a few close colleagues to talk and debrief with was essential, life-giving and absolute to my practice in the face of assisted dying.
And finally, I reflected deeply on the meaning of suffering and what this looks like now for a society with access to voluntary assisted dying for those with a terminal illness.
Suffering and voluntary assisted dying — a reflection on meaning
Whether we acknowledge it or not, suffering is part of the human condition and an inescapable part of life.
Suffering is meant to be uncomfortable and at times evoke sadness. It is meant to be tragic and confronting and it is meant to be difficult to deal with. Suffering is meant to cause spiritual discomfort, physical pain, emotional turmoil and psychological distress. And suffering was always meant to exist because to live is to know and become acquainted with all types of suffering.
But suffering can also be useful and necessary. Suffering can cause growth. And suffering can cause us to face our deepest and sometimes unfounded fears, let go of the comfort that we’ve hung on to and embrace a new level of life and lessons that suffering can teach us.
In Palliative Care, suffering is the air that I breathe. I witness and walk on both sides of suffering each day. I see hope lost and hope found. I see demoralisation and indignity but also transcendence and grace. And I see peace in death but also rage and distress — this is the coal face and daily practice of our speciality.
I love this cartoon because it shows how two people will see and respond to suffering differently in their world — they will either transcend and find hope in this obstacle or be burdened by it. Please note I am NOT talking about suffering inflicted upon yourself from poor decision making and reckless living — this is unnecessary suffering or preventable suffering.
Nothing tests us to think about who we really are and what we are living for until our suffering demolishes our plans, our hopes and our dreams.
Without the framework of religion, individuals must look to find meaning in their suffering in order to find hope and transcend their circumstances.
For some, voluntary assisted dying is how they may find healing and wholeness at the end of their lives.
But for me and many others, religious and non-religious alike, the suffering we experience in life has meaning to it.
These days are often the richest time in a person’s life where finding transcendence is not simply beneficial to them but to the world bearing witness to their existential epiphany, the grace that they find in weakness and the dignity in death that is possible.
It is my ardent belief that when our hope and our worship lie in things of this world which decay and fade away and are the very things that we will have to leave behind — the suffering we experience and the loss of self will be utterly devastating.
These false idols of worship can be our health and vitality, our beauty and strength, our relationships and loved ones, our wealth, money and possessions, our power and prestige and finally and most importantly the sense of control and comfort that we think that we have and deserve respectively. In fact, I’ve seen that the loss of hope in these things can be more unbearable than physical suffering.
The hope in this situation is to reflect on what Viktor Frankl said:
“Life is never made unbearable by circumstances, but only by lack of meaning and purpose” — Viktor Frankl
The opportunity to find hope is open to everyone when facing death, this is possible.
All life has meaning to it and all people have a purpose to fulfil right up until their death.
Transcendence in suffering is possible.
But if all that is seen in suffering and loss and the burden of the human condition that is too much to bear, then I can see why many in our society fought so hard to arrive at voluntary assisted dying.
An avenue where life can be ended and stopped and our senses and sensibilities comforted. Death here is no longer natural because life has been reduced (not elevated) to something that we can switch off when life becomes too much for us and those around us to bear.
I do not mourn the assisted dying legislation but what this represents for our society. A society that is less able to look inward at what we worship and what we are living for but one that wants to rid itself of anything that threatens our sense of comfort, those things confronts us with the stark realities of life and diminish the refining fire of suffering.
And so I mourn for what lies next.
I know that these are heavy words and many may not agree but that is okay with me. These are my thoughts as a conscientious objector working at the coal face of death. These do not represent my employer’s views and I am an adult and I’ll deal with that.
But in all this, I have resolved that as a Christian Palliative Care doctor, I will provide my best to those who choose assisted dying until their last breath. I will not participate in the administration and clinical aspects of assisted dying but I recognise that this is their choice and their way of finding meaning in suffering and healing from their terminal infirmity.
At the centre of my world is my faith. And at the core of the Gospel message is Jesus’s life and his suffering, his death and resurrection for me and you. My salvation is everything — it is the strength in my suffering, my hope in death and my glory in this life.
To live in line with the Gospel is to know that not everybody will think and act like me but to treat that person whom I powerfully disagree with — with respect, humility and love — Tim Keller.
For me, there is freedom and meaning in suffering. For when I suffer, I am closest to Christ. These times in my life where my suffering has been great have been the greatest moments of clarity, closeness and connection to God. Inflexion points of growth, deepening of my love for him and expansion of my compassion for others.
Facing one’s mortality can be one of the greatest points of personal growth and freedom in both a believer and non-believers world. It can also herald quite the opposite — devastation, when the idols of our worship are lost in our suffering and death appears as the only option.
The return home
Through those sessions, my confidence slowly returned and the calling upon my life became certain again. I’d always found meaning in Palliative Care through my contribution and connection with my patients — this would still continue. I could see light! I also saw that I could work with voluntary assisted dying and not feel like my life was falling apart or my faith was being compromised.
During this time, my work continued and my team never let me feel like I was a burden or a bother and that my feelings did not matter. We all struggle at times and this was mine at the moment. They knew that my faith meant everything and the sequence of events that had unfolded this year had left me reeling.
And then something wonderful happened not long after I decided that I wasn’t going to leave — I found out that I had won a national Palliative Care award!
It was simply magnificent and the clearest confirmation and recognition of my calling and work in Palliative care and a clear sign of love from my God.
I was certain that I needed to continue working in this space. One filled with complexity, spiritual distress and the deep need for wisdom.
What do I do with assisted dying requests?
A few days before I finally published this article, 4 months after I started to write it, I had an encounter with a patient that I’d like to share.
“Jonathan, I don’t want to suffer and waste away like my mother did. If this cancer gets too much, I want to just go. Just let me go. I don’t want to hang around a suffer as she did. It was horrible to watch.”
His wife and daughter nod, their gaze downcast.
“I’m sorry to hear that. Are you talking about assisted dying?”
“Yes. I never thought that I’d want it. But then I never thought that I’d get this bloody cancer”.
He pauses and sighs. The moment is heavy with the weight of his confession.
“I don’t want to suffer. What do I do? Does this paperwork help cover me for that?
He holds up a large yellow manilla envelope containing an Advanced Health Directive that I’d given him 3 weeks earlier. I shake my head before I answer.
“No, it doesn’t, but I can fill that paperwork out. With your permission, I can talk to you about assisted dying now if you’d like. But voluntary assisted dying is not covered by an advanced health directive. What it involves is………”
That review went well. We covered a vast array of issues, from pain management to discussing voluntary assisted dying. I addressed their questions and I provided them with a few points to consider before we see each other again.
But as you can see, I’ve travelled quite a distance in the last seven months!
Requests like these have become increasingly common and will never feel normal to me as a Christian Palliative Care Doctor. But I feel more equipped in how to respond to requests rather than reacting through the journey of finding meaning that I’ve been on.
We as a team have had a steady stream of requests for voluntary assisted dying since the legislation came into effect on July 1st with several patients completing their assisted death. What doesn’t surprise me is the less than easy feeling we share when VAD is discussed or when we are informed that an assisted death has been completed. Surreal is an understatement for our Palliative Care service. VAD means so much more than three letters printed on a medical and nursing handover sheet.
The way forward
My faith will continue always to be the strength of my life and the joy of my heart. As a Christian Palliative Care doctor I believe that although my body may fail, God is my hope forever. He numbers the days of our life and the suffering ahead is suffering that he allows. There is hope in our pain and there is meaning to it in Christ and to those around us. This will always be my truth, my heart and my life.
In this season I was shown compassion by many and I was respected and loved in my pain. I was given the time I needed to heal and for this, I am grateful.
Voluntary assisted dying will not ever be considered Palliative Care but it is certainly now part of end of life care in Western Australia by law. Both can work simultaneously together allowing us to serve our patients who choose VAD right until their last breath.
To simply refuse to have anything to do with VAD is detrimental to Palliative Care. To shut down and feel numb is the sign of being overwhelmed with thoughts, feelings and unexpressed emotion. My encouragement to those who feel this way is to get help and process that emotion and explore those thoughts. We are all better people when we are able to think clearly and act with conviction in our lives. Unprocessed emotion and unexpressed thought have a strange way of adversely manifesting in your life….trust me, I am a doctor!
For those who have championed the cause of VAD and are avid practitioners and political advocates, understand that I would like to work with you but please have patience with me and others. This is much more than a change in the law. This is because assisted dying challenges the core values of my faith and the fundamentals of the meaning of suffering.
Palliative care is of supreme importance and not simply for those who are imminently dying. Our foundation is whole-person care which is something that everybody can benefit from, dying or not.
The Palliative approach is to work with anyone, all broken human beings, of which we all are. To work with whoever and whatever you may be — never with judgement, always in mercy, advocating for justice, bathed in love and humility.
Palliative Care aims to repair disconnection and restore dignity wherever it may be needed — in physical health, psychological wellbeing, social distress and spiritual brokenness.
We all can benefit from the tenets of Palliative Care.
For those who are struggling with voluntary assisted dying, It is okay not to be okay as we are fragile human vessels, broken easily and swayed by shifting sands of change.
I am okay today thanks to my team’s compassion and my God who never let me out of his loving gaze during this time.
Whilst 2021 was a challenging year and it has taught me AGAIN that life is full of unexpected character-shaping experiences. These experiences are what make and shape us and build strength in our lives. It has made me a better person, a more compassionate doctor and a man whose heart is sold forever to the one who created me.
Vale to the person I knew who died. You lived well. You are loved and truly missed.
Dr. Jonathan Ramachenderan
Enjoy your health.