Hazel McHaffie

chemotherapy

Conversations on Dying

‘And that’s the reality of all human lives when it comes down to it, isn’t it? That we choose the narrative we write with our lives every day. By the decisions we make, by the ways we chose to spend our days, we craft the lives we live in, our story.’

Dr Larry Librach lived a rich life, told an impressive story.

‘If you had to imagine an archetypal favourite uncle, you’d probably come up with someone like Larry. His eyes crinkle because a smile is his face’s default setting. His trademark moustache, which has been grey since I first knew him, is always neatly groomed, but it’s constantly being worked – curling upward at each end, He still has a full head of hair, despite his sixty-six years, and it always gives the impression that it’s on the cusp of being unruly – that it might any second explode into an Eisteinian mop.’

Dr Librach? … Who? … He was a palliative care physician in North America, co-founder and director of the Temmy Latner Centre for Palliative Care, one of the largest such centres in the world. He dedicated his working years, his distinguished career, to helping his patients navigate their final journeys, to teaching others to truly understand and provide empathy, sensitivity and real support. He readily agreed to assist journalist and writer, Phil Dwyer; to be interviewed, to be shadowed as he went about his work caring for dying patients in the community. Here was an opportunity to teach a far wider circle of people than those in his immediate circle of students and colleagues. To improve care everywhere.

It was a body blow to Dwyer when he learned that Larry himself had been diagnosed with terminal pancreatic cancer. But such was the generosity of the doctor (and his wife) that Larry continued the interviews, now sharing his own personal experience of dying at every stage, to give an even more intimate insight into what it feels like to walk this painful path. One more teaching opportunity – perhaps the most powerful. One more chance to tell those who would come after him – patient, relative, friend, physician – what helps, what hurts, how care could be made better.

‘It wasn’t the cancer that crafted Larry’s narrative, but the choices he made after he knew about it. Larry chose to die, as he had lived, with purpose. It was only that, only his intent, that gave his death meaning. But it was enough. More than enough.’

Conversations on Dying is the book that came out of this joint venture. It’s a beautifully hopeful, energised story of love and commitment, of family and friendship, and a seemingly bottomless well of compassion. Larry somehow manages to combine an honest appraisal of the emotion and pain of his situation, with a rather unnervingly detached scientific perspective and analysis, even when things seem bleak and overwhelming.

Phil Dwyer too is impressive. His intimate connection with his co-worker is plain to see, his own grief and pain raw, and made all the more poignant because he is simultaneously reliving the death of his own elder brother three years before from throat cancer. He compares the two experiences, learning, understanding, mourning … and with new illumination comes new sorrow. But in spite of the personal cost he manages to write with elegance, wisdom and sensitivity, creating a narrative both moving and intensely readable.

No detail is too small, no nuance missed. His brother John had craved a Chelsea bun and a pint of beer; the mass in his throat prevented him ingesting either.

‘These are the things we lose. Everyday things. Things we’ve experienced thousands of times without pausing to savour them. These are the things that become important when they’re taken away from us.’

Phil (in Canada) and John (in the UK) were continents apart. He lived in dread of that  unexpected family phonecall from a foreign land, the terror, the immediate imaginings of death or disaster.

Mayhem lurks in that transatlantic static
‘… hollowness would open up as I lifted the handset’

And finally …

‘When she [his sister] did [speak] it was in a voice that had been washed clean of every bright note, a flat, emotionless tone from the country of the mourning. She couldn’t even say the words. All she could say was “it’s happened”.’

It might be supposed that Dr Librach’s own experience would be one of gold standard care. After all he was famous, it was he who taught his personal physicians how to care. But no, he too was subjected to thoughtlessness, insensitivity, even negligence at times. A receptionist chose to file her nails rather than give him thirty seconds of her time to supply a document he needed. Dr X completely fouled up Larry’s treatment for jaundice. But he faced the good, the bad and the ugly equally with courage and clear sightedness. He listed the deficiencies of current provision in his own discipline boldly and wisely:

  • Liaising between parts of the system is poor; appointments are not dovetailed, making impossible demands on dying people.
  • There’s too much centring on disease not on the person and family; insufficient true caring; not enough team spirit; too little respect for the patient’s time; too little empathy; ineffective information exchange; too little welcome.
  • The government is all about performance indicators; healthcare administrators are more into spreadsheets, too far from the bedside.
  • Not everyone with cancer needs to have treatment; quality of life as opposed to quantity is important. Chemotherapy can kill the elderly as well as cripple the health care system. Why try to save the dying at all costs? What for?

Ring any bells?

In the face of ‘the gut shreddingness of the emotions that tear into us at such a time’ there are certain key things that matter. Typically he gets to the very kernel of what counts in the end:

  • being respected and cared for as an individual
  • being heard
  • being free to ‘let it all hang out’, sharing the emotions, not bottling things up
  • keeping communication lines open
  • finding your own meaning and value in life

Simple things. Human, compassionate, loving things.

I’ve written and talked about the issues around dying myself for many many years (ad nauseam my family would say!); I’ve read countless books on the subject; I’ve even written a novel about assisted dying. But this one, Conversations on Dying, is unique in my experience. Its candid and energetic approach, the intimacy of the collaborators with each other and with death, their courage and generosity in allowing us to witness their raw emotion and vulnerability at close quarters, their clear summary of the issues that matter, offer us at once an enormous privilege and a lesson for life. I salute them both.

And thank you, Amanda, for recognising that this is my kind of reading, and for your generous gift of this special book. I shall treasure it.

(NB. You may like to know that radio broadcaster Eddie Mair has recently recorded a series of talks with journalist Steve Hewlett – who died a couple of weeks ago – about his experience of terminal oesophageal cancer. They cover similar ground.)
 

 

 

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Hannah’s Choice

Memories and emotions relating to my brother, Rob, have been flooding back this week. I’ve been reading Hannah’s Choice by Hannah and Kirsty Jones (assisted by Megan Lloyd Davies), a book I’ve had on my wish list for ages but only just recently bought. I read it in one sitting, and then I dug out the letters Rob wrote to me at the time of his illness, and read them again too.

In 1997 Rob was diagnosed with leukaemia. And in the ensuing months he faced some of the biggest questions of his life. Should he go for potentially dangerous treatments – chemotherapy, bone marrow transplant – or not? When one course of action failed should he go back for more? As a fully competent adult in his forties, he was very aware of the relative risks and consequences of the different options. There were no easy answers. Decisions he made would have implications, not only for him personally, but for his young family too. I knew those risks intellectually, but even so I was unprepared for the emotional impact of accepting his choices and then seeing him develop serious complications and battle for his life. I often asked myself, what would I have done in similar circumstances?

But imagine weighing up such risks and benefits not for yourself but for your child, a child who is not yet a teenager. And then imagine if she resolutely maintains she wants to make her own decisions … but her choices don’t square with yours. That’s Hannah’s story.

Hannah's ChoiceI well remember the furore raised by her personal decision not to have a heart transplant, which hit the headlines in 2008. Her choice sparked a vigorous debate about a child’s right and ability to make a life-or-death decision. I was much exercised by the arguments at the time, but somehow I’d either missed or forgotten (not uncommon these days!) what happened after she went home to die, so the ending of the book came as a surprise to me. In case you’re in the same position I won’t spoil it for you.

Hannah faced not one but two life-threatening illnesses: leukaemia when she was four years old, severe heart disease (cardiomyopathy) subsequently. The firsthand account of her treatment makes harrowing reading and reminded me vividly of the agonies my brother endured.

‘Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge … She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away.

As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t.’

The price paid is indeed high. And there are no guarantees.

Hannah grew to hate hospitals. And she hated being treated differently. She didn’t want the ‘Chitty Chitty Bang Bang looks’; she wanted to be told off when she was naughty; she desperately wanted to be ‘normal’. Meeting other children with limited life expectancy she said: ‘… we talked about the here and now, not the future, and that’s what I like to do – take every day as it comes, which means you mostly enjoy them instead of worrying.’

Sadly, early into her treatment things went unexpectedly and badly wrong. After two of the recommended six rounds of chemotherapy to treat her leukaemia, Hannah’s heart became seriously damaged by the toxic drugs – a very rare side effect. Now her parents were faced with an even more stark choice: stop the chemotherapy and risk the cancer returning, or continue with treatment but risk further damage to the heart.

‘How could Andrew and I decide to stop the treatment that was meant to be saving Hannah’s life? But how could we continue the chemotherapy knowing we might risk Hannah’s health in another way? Surely it was an impossible choice?’

A compromise was reached. Hannah had one more round of chemotherapy. The leukaemia didn’t return but the heart problems increased. Her kidneys started failing. She was a desperately sick girl. As she deteriorated her only hope was a heart transplant. By now though, Hannah was herself older, 12, then 13; she had her own views. She’d grappled with illness since she was four, she’d spent much of her life in hospital, she knew pain intimately. And she knew she did not want to remain in hospital; she did not want a heart transplant. She wanted to go home, to be amongst those she loved, to enjoy the simple pleasures of childhood while she could. As she was quick to clarify, she wasn’t asking for the ‘right to die’, but for the right to live her life in the way she wanted – at home with her parents and her siblings.

Her parents showed amazing courage. In spite of criticism, they listened to their daughter, they respected her opinion.

‘… I’d learned that children who have felt death whisper at the edges of their world can become wise beyond their years.’

‘Her gaze was that of an old soul, staring out from a child’s face. It was the same look she had given me a long time ago when she had fought for her life the first time, and in moments like those I understood that Hannah had been to places I could never know.’

Whatever her decision, they told her, they would support her. Indeed Kirsty, her mother, an experienced nurse herself, went further. This journey alongside Hannah had taught her powerful lessons about life and about parenthood, she said.

‘I remembered the moment she was born, the feeling of the tears slipping salty down the side of my face as I held Hannah for the first time. Back then I’d known how lucky I was to have her after waiting for so long. But it was only now I knew for certain that she was not mine to keep or lose: Hannah, like every child, was a gift, not a right. I must cherish her for as long as she was mine.’

But a locum doctor couldn’t accept Hannah’s decision, and he set in train a course of action that added considerably to the strain the family were under. Hannah was threatened with a court order to remove her from the custody of her parents and force her to have the operation. She was required to make her case alone to a child protection officer.

However, whilst there were plenty of strangers who disapproved of their choices and had no hesitation in saying so, the Jones family were supported strongly by the healthcare professionals who had known them throughout the years of their ordeal. Hannah herself, though she hated being in hospital, found peace and comfort in a children’s hospice. When she heard about MPs fiddling their expenses, she drew up a list of things she’d do if she were Prime Minister. Top of her list was: ‘Make the government pay for children’s hospice care like Acorns because they don’t and I think that’s really bad.’

Out of the mouths of babes …

This book is an amazing story of courage and love. And challenging. Would I have had the strength to let my own child of 13 decide to forgo the one treatment that offered hope of a 15th birthday? I don’t know. How can we know until we’re faced with such a situation? But having read this book I have nothing but admiration for the pathway this family chose.

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