Life takes many turns, for us, just as for our patients. Wellness for most is a fleeting state, punctuated by crises of varying impact on ourselves and those we love.
When a busy life had been slowly curtailed by years of ongoing fatigue I was more puzzled than distressed. I was frustrated by not being able to ‘keep up’, but accepting that, for whatever reason, this was how it had to be. Little doubt you can imagine that I struggled through with ‘eczema’ being pitched as a primary cause. Four years on from an initial eczema diagnosis, and after more than one ‘opinion’, a skin biopsy revealed that there was a little more to this malady that had largely taken over my life. Suddenly I was confronted with the potential reality of a rare, rapidly progressive lymphoma.
‘Rare’ however comes with myriad implications. The first was the question: where might a pathologist be found who would make a call on the histology? And to think we all regard the radiologist’s emblem as a fence depicted suitably encircled by the obligatory ‘Latin’? Indeed, it was exactly so for a pathological opinion. But it didn’t end there. Where next to find expert haematological assessment and ongoing care?
Suffice to say that over a period of some weeks, and following multiple investigations, via Royal North Shore, I found myself at Melbourne’s PeterMac where a diagnosis of Sézary Syndrome was confirmed. Unfortunate? Well, yes. But to be in the hands of one of the world’s leading researchers in the area of Cutaneous T-cell Lymphoma (CTCL) was somehow comforting. Perversely it was also reassuring to hear that ‘eczema’ it was not!
The year that followed saw three attempts to achieve remission fail. A mAb, interferon and finally a retinoid - the latter received on ‘compassionate grounds’ from the parent company in America, each only had no, or short-lived effects.
Now, attendance at the nation’s preeminent multidisciplinary CTCL clinic meant that all options for intervention were able to be considered. Amongst these was Bone Marrow Transplant (BMT). Even while other treatments were underway, work up for a possible transplant was begun. It was the case then, after a third failed drug, that BMT was seriously considered.
By this time, with transient responses only to interventions that each brought with them a grab bag of side effects, I had had ample opportunity to contemplate my predicament. I believe that I experienced during this period a true existential crisis. It lasted many weeks. I read Frankl, Levi and Gawande. I conversed with colleagues interested in end of life matters. It passed, and I was able to confront BMT comfortable in the knowledge that I may not survive the intervention, much less it’s potential for inducing ongoing, significant pathology, such as graft versus host disease.
I mention this now because it is critical in my own considerations of end of life and my views on assisted dying. I had accepted not just the diagnosis, but the reality of limited life expectancy. Bound up with this was the knowledge that death will be preceded most likely by sepsis and multiple organ failure. At a point midway through treatment, for better or for worse, I had been invited by my treating team to sit in on an annual CTCL clinical forum at the PeterMac. The cases presented were not something abstract. They were me!
And so, to the transplant. The match was good. Hopes were high. Things however did not go well. I developed overwhelming EBV and CMV infections and, as a consequence, multiple organ failure. The ‘single-organ’ specialists were called in and a liver biopsy was ordered. Late on a Friday afternoon, after the biopsy, I bled and had a hypovolaemic arrest. There was a 12-unit transfusion, 15 minutes of CPR, ‘coiling’ of the offending bleeder, and a three-day ICU stay.
Engraftment ultimately failed.
I endured a further two months of total body skin electron beam therapy before we made our way back home after ten months in Melbourne. To everyone’s surprise, at my last clinic visit before leaving, everything indicated a remission.
It was more than six months however before I began to feel part of the world again, by which time skin symptoms had begun to return and bloods confirmed a relapse.
There will be further attempts to contain symptoms but there is nothing on the horizon available that might assist in achieving remission. The fanfare over CAR-T relates to B-cell lymphoma only, and even there, when closely examined, the data aren’t all of that encouraging.
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Having more than glimpsed the reality of end of life with Sézary, I have sought, with my family, to give consideration to what the choices are for me. There is no shortage of commentary in the medical literature, and in the main stream media, on assisted dying. A career in critical care and acute pain had shaped my own views long before the events of the last few years. I will have the choice to be assisted to die.
While respecting the concerns of the thirty percent of the community who are either unsure, or definitely opposed to assisted dying, it remains that scrutiny of real-world experience demonstrates that laws can be enacted to ensure that those few who are unable to be relieved of physical, and or existential suffering in the face of an imminent death, can take their own lives with medical assistance.
The debate, though misconstrued by many of our colleagues as such, is not about assisted dying at the expense of improved palliative care. These are not mutually exclusive. Importantly, participation by medical practitioners is also not mandatory. Arguments suggestive of a ‘slippery slope’, of random killings at the behest of who-knows-who, and of failure of technique are ill founded.
Despite the best efforts of a small, unrepresentative cadre of prominent clinicians, it is clear that a majority agree with the view that the matter of legislation to allow Voluntary Assisted Dying is ultimately a matter for society and Government - State Government. The Commonwealth does not have jurisdiction in this area and will not intervene.
So, as with every intervention that we entertain for our patients, it behoves us to be as familiar with the issues as possible, to be informed. In this regard, amongst the sometimes purely emotional, there exist a number of definitive pieces on end of life choice. On the matter of not just the existing role of a clinician, but critically also, the language of discussion, the Victorian Civil and Administrative Tribunal judgement in the case of Syme v. Medical Board of Australia holds so much of significance.
For those who maintain an opposing view there is an important contribution to discussion in a BMJ piece that offers an insightful and very personal experience of a physician altering his view. And the experience and questions of an American physician, a year on from the introduction of California’s ‘End of Life Option Act’ are outlined here.
Combining issues of language and physician appreciation of assisted dying with an immensely powerful patient story is, in my view, key to coming to an understanding of one’s own stance. Again, there are many stories, but few to equal that of Canadian, John Shields, and his doctor, Stefanie Green, as told to the New York Times.
Twenty years on from the introduction of assisted dying in Oregon, 2016 saw a little under ‘four tenths of one percent’ of those who died in the State use this option. It is for us then to truly focus on ideals addressed by my friend and erstwhile colleague, Ken Hillman, in his recent monograph ‘A Good Life to the End’. These are not matters of ‘all or none’, they are matters for consideration, and ultimately, choice.
I wish you all well as you ponder what your own end of life wishes might be.
Ian
