This post is written by Morag Zwartz- a Melbourne Journalist and writer. She recently published 'Being Sam' which movingly details her experience of mothering a son with Down Syndrome and his fifteen-year journey with leukaemia.
It comes as a delightful co-incidence - or maybe a gentle collision of world views - that just days after publishing my latest book, Being Sam, I am invited to write this blog on kindness. It’s not as though I had the word kindness, or even generosity or sensitivity or empathy in my head as I wrote of my son’s fifteen-year stint in cancer land, but it is nevertheless easy to read this book through the prism of kindness demonstrated and kindness welcomed.
I suspect that the word kindness is not yet sufficiently revered in our health care culture to quite hold its head up alongside professionalism, competence, or success. To be sure, the concept, even unarticulated, will be not far from the surface in the minds of those on the receiving end of health care, but is it upper-most in the minds and actions of providers?
I don’t want to be political, and certainly not judgemental about such motivations and will happily leave that to others who have earned the right to influence their medical colleagues. But what I do feel qualified to do is to talk about what it is like to be the recipient of kindness, of what a difference it can make in the life of a patient to be granted even the tiniest hint of gentleness or patience or empathy.
I suspect there will always be a certain element of dissatisfaction among some patients, a neediness or a grasping for unrealistic outcomes or unreasonable waiting periods that could be misconstrued as an absence of kindness or empathy. What I am saying, in part, is that I do not expect every single encounter with a medical care person to leave me feeling caressed or upheld. Sometimes staff simply need to inform, to explain, and to do so in a way that is not abrupt or rushed. This alone is significant. Kindness can come in many guises, even as small a one as a smile of commiseration, or a lingering over unwelcome words.
My son Samuel was diagnosed at two years of age with acute lymphoblastic leukaemia (ALL) and treated with the two years of chemotherapy that was the international protocol at that time – in 1996. He subsequently relapsed and had more chemotherapy in 2000. He again relapsed in 2005, 2008 and 2009 and in 2010 he developed CNS disease, in which a form of the leukaemia is now in the spinal fluid as well as in the bone marrow. So we had 15 years, off and on, of hanging out with oncologists as well as with various other doctors as more and more bits of Samuel’s body raged against the repeated onslaughts of both cancer and toxic pharmaceuticals, and stopped working. Our paediatric oncologist at Monash Children’s Hospital, Peter Downie, was a constant overseer in all Sam’s treatment, and I have come to regard constancy – consistency in care – as perhaps the first pillar of kindness in the sphere of cancer treatment. Just to know, and be known, and to be known in a historical sense, is valuable beyond words, but I must add that our experience was extremely rare. Most children recover after one round of chemotherapy and do not need to nurse the terror/hope that if they return for another round of treatment they will at least have the same doctor!
I am confident I will speak for many if I say that one of the hardest aspects of serious illness, both for the patient and also for his/her closest supporters (the level of intimacy and committedness is such that there can rarely be more than one or two people in this role) is the feeling of isolation. You sense that you are utterly alone on this road, and that even your closest loved ones may not comprehend the frightening strangeness of your new identity. It is threatening, not just because it is utterly foreign, but because it brings with it a host of scary medical terms, procedures, time-frames and prognoses.
And navigating this alien new world is made possible only by the company of those who are more familiar with it, those who have chosen to make it their world albeit from a very different entry point. Yes, doctors! I didn’t ever feel that they needed to be fellow-sufferers to be fellow-travellers. Just their presence on that road with us brought a measure of comfort.
But therein lies the challenge for those who are drawn to the culture of kindness. There are limits, of course. The patient, alone, has the true knowledge that derives from experience, and the rest of us can only travel beside them as best we can. I wonder then, if kindness in care is merely a kind of empathy in action. Empathy personified, or demonstrated.
When I consider those experiences that stand out the most for being made bearable by the medical people involved it is invariably the attribute of patience that is most significant, and somehow I doubt that that patience could ever exist outside a disposition of kindness. I know that Samuel was particularly vulnerable being a child, and a child with Down syndrome at that, but there were many, many times when I was acutely aware that we were using up valuable time to get to the point of compliance for some nasty procedure, to work up a sufficient level of trust.
Samuel never once conceded to the determined persuasion of medical staff and loved ones to look away, to be distracted, to make light of what was about to happen. He must witness every moment, and he must give consent. He must be brought to a place of submission, against his own experience and intuition. An astonishing accomplishment, both then, in the tense moments involved, and now, as I reflect back on it!
But there was wisdom in the patience I witnessed, and together that wisdom and patience felt very much like kindness. And in this context at least, that kindness also constituted common sense, for to have acted differently would have been utterly counter-productive. But then, I’m surely not the first person to have concluded that kindness in care has flow-on advantages way beyond the most immediate and obvious ones.
Towards the end of Sam’s life we faced what to us felt like the most terrifying treatment of all, spino/cranial radiation treatment. Since even the environment for this, in the old Peter MacCallum Cancer Centre – a basement, an absence of sunlight and the distraction of window views, brought a sense of foreboding, the friendly greetings by staff provided our first valuable daily prop, the first hint that maybe we would, after all, survive the session we dreaded. Friendliness, warmth, putting the patient at ease, calling him by name and even remembering who he was, all proved vital.
When it was our turn to go into a treatment room and the serious stuff started, I discovered that there were one or two staff members in particular whose kindness would ensure the least traumatic treatment session possible. You might wonder, as I still do now, how it was that those radiation technicians (along with Sam’s loved ones) could ever manage to persuade Sam to strip to the waist and lie in his mould on the hard trolley before then agreeing that the hard plastic face mask could be clamped firmly over his face. I will always regard this particular experience as the most incontrovertible evidence one could find, of the critical place of kind and humane care. Compassion, even. More than once I was convinced that there would be no way we could manage this procedure. That even if we did succeed in having the child prostrate and immobile for the time it took to set up the machinery and raise him up into the massive radiation womb, it would then prove impossible to keep him calm not to mention motionless for the duration of the radiation.
I can’t over-emphasise the expenditure of patience each time as Sam was cajoled, persuaded, jollied along, supported and mentally and emotionally carried into and through this experience each day. But that delicious mix of patience and empathy continued throughout each treatment procedure.
You will easily recognise the kindness on display here, and one of the things I have sought to achieve in my book is to reveal to others two aspects of our shared humanity: the depths of vulnerability for the sick and frightened patient in situations such as these, and the critical role played by those administering health care.
We can walk away from our treatment experiences scowling and miserable, troubled and traumatised and bursting to tell our loved ones they should NEVER go to this doctor or THAT hospital, or we can resume our life with a lingering sense of gratitude for what was made bearable, and what gave us a sense that we were valued as individuals at a particularly vulnerable and needy point in our lives. For a hand that reached out and held us firmly.
Being Sam is available through the website beingsam.net