Hazel McHaffie

Eddie Mair

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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