Hazel McHaffie

palliative care

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.)
 

 

 

, , , , , , , , , , ,

Comments

Good care? What is it?

Well, October has begun with a rash of developments in my world.

Assisted dying lawsTo begin with, another state in the USA, California, has made assisted suicide legal as from 1 January next year. They are the fifth state to do so. The law, based on a similar measure in Oregon, allows doctors to prescribe drugs to end a patient’s life if two medical practitioners agree the person has only six months to live and is mentally competent. Interestingly, in this case, the law as it’s presently written, will expire after ten years unless extended. Apparently this was a compromise made for those lawmakers who fear unintended consequences such as targeting of the poor, disabled or elderly. Sounds like a sensible caution to me.

This week too, we’ve heard of a report by the Economist Intelligence Unit, which finds the UK ‘the best place in the world to die’ as the newspapers put it; top of 80 countries involved in their survey when it comes to end-of-life care. Key factors are identified as a strong hospice movement, palliative care integrated into the NHS, specialised staff, and hospital/community integration … hmm … more of this anon.

Then, building on this, Baroness Ilora Finlay, a major spokesperson on the topic, and herself a former medical consultant in palliative care, came on TV this week to talk about her draft Palliative Care Bill which tries to address the disconnect between medical and social services in care of the dying; to provide equitable and efficient care for all. Being top in the survey is encouraging, she says, but there’s still plenty of work to be done to ensure excellence across the board. Indeedy!

The emphasis is on really listening to what the families need at a time when they are caring for a loved one, and providing a central hub for familes to liaise with, in order to avoid the frustration of time and effort wasted searching for the right people to help.

Aged hands claspedThis all resonates for me at the moment. Someone I care about was recently admitted into the acute NHS system, into a vast, bright new shiny hospital, for management of her broken hip. Sybil (not her real name) is in her nineties, she has dementia, she is bewildered and confused by the alien environment, as well as immobilised by a fracture and on medication for pain relief. I’m quite sure her actual medical treatment was expert: the hip was fixed rapidly. But – a big BUT – the staff in the two wards Sybil was placed in were openly hierarchical, those with power seemed to have no time to listen, no willingness to know what would help to keep this lost wee soul calm and secure. It was down to us who know and love her to try to fill these gaps as best we could in the times we were able/permitted to be with her. And it was obvious that Sybil was not happy; she caused mayhem on more than one occasion!

This week she’s been transferred to a low-tech community facility; older, more run down, higgeldly-piggedly. But the difference inside the ward housing her is palpable too. Everywhere you go staff are friendly and helpful, anxious to accommodate the needs of the patients in their orbit; anything that will help Sybil settle and smile is welcomed. We can walk away knowing she’s in good hands. She’s already visibly more relaxed.

Good care is so much more than up-to-the-minute medicine. And when it comes to elderly people with dementia, it’s often the little things that make the difference between wanting to go on and preferring to die; little things that tell them they are valued and cherished and understood.

Old fashioned pen and inkFifty years ago I wrote an essay – using this very Parker pen – about the care of patients being so much more than delivering technical procedures efficiently. It won a prize from the British Medical Association no less! Back then the medical technology and capability we take for granted in the twenty-first century was undreamed of, but basic human needs remain much the same. That message is needed every bit as much. Let’s not lose sight of this in all our cleverness.

 

 

, , , , , , , , , , , , ,

Comments

Assisted life or assisted death, that is the question

Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.

Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.

Photo courtesy of Photolia

Photo courtesy of Photolia

In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …

Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.

So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Right to DieNow, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.

So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)

I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.

In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.

I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.

Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.

The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.

There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.

All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all the  discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?

Shutterstock image

Shutterstock image

Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.

What do YOU think?

 

, , , , , , , ,

Comments

Take it as read

It takes a while to catch up with news after a break away, but in this week’s trawl, two headlines in particular caught my attention.

The first was this one: Take it as read – good fiction teaches us how to be human beings, a thoughtful article by Graeme Archer in The Daily Telegraph, where he said:

‘… it’s not the novels where one sees oneself in a character that matter: it’s the ones where you learn to see properly, from the perspective of another. If we don’t see people properly, then we can never empathise with them, and if we can’t empathise with others then we’re not properly human. No matter how socially awkward you are, a great novel will train you to do this.’

Very much the premise upon which I write my own novels.

Indeed, I was thinking about this a lot while I was on holiday in Italy. I took the trusty Kindle well-loaded and managed to read two and a half novels in airports and trains and planes and odd moments of inactivity: Untying the Knot Emotional GeologyEmotional Geology and Untying the Knot both by Linda Gillard, and A Sister’s Gift by Giselle Green. Through these tales I was taken into the lives and minds of characters grappling with mental illness, obsessive personalities, infertility, conflicted family relationships, surrogate pregnancy. Easy reads all (as befits a holiday break), but it’s fair to say they enriched my understanding of the challenges and thinking of other people in these situations. I shan’t ever experience most of these things personally, but I’d like to think I’d have empathy enough should I come into contact with those for whom these things are a lived reality.

The second headline was attached to an article my daughter cut out of the newspaper for me: ‘Why did my brother die in agony?’, subheaded: ‘Terminally ill patients are suffering slow and painful deaths because doctors dare not fall foul of the law against assisted suicide.’  Yep, it instantly grabbed me by the throat, as she knew it would.

Well-known cookery expert, Prue Leith, was describing her brother David’s terminal battle with excruciatingly painful cancer of the bones. When the morphine was doing its job, he was pain-free, joking, and sharing quality time with his wife and four children. But the dosage of morphine was sufficient for only three hours out of every four for which it was prescribed. For that fourth hour he was in agony. The solution seems obvious and simple, doesn’t it? Naturally enough, various relatives appealed, nay, ‘pleaded’, for help. The answer though was what shocked me: the nurses ‘couldn’t’ give any more pain relief. They sympathised, even told the family they would personally be willing to increase the dose, but they were powerless to do so; the law precluded it. They also said, no one admitted these situations existed. (By this time I was at fever pitch!)

Now, of course, no one with warm blood coursing through their veins could fail to be moved by the obvious distress the Leith family all suffered. But the story left me personally feeling frustrated and vexed. This man clearly needed more medication. And it can, it really can be given without breaking the law. Palliative medicine is an extremely well developed discipline; dedicated teams of experts in pain management are fully empowered to administer effective measures (drugs and others treatments) in these circumstances, to ensure ongoing comfort and dignity and a peaceful death. Which they are able to do in all except a limited number of situations. And by Prue’s own admission, David’s pain came into the category of controllable by morphine.

Both the subheading and Prue’s concluding message – ‘The present state of affairs is monstrous. With 80 percent of the population in favour of assisted dying, what are they waiting for?’ – missed the point. It wasn’t assisted death this man needed, it was legal and legitimate, adequate pain relief.

There are indeed exceptional cases where the laws relating to assisted dying need to be challenged (I’ve discussed them at length on this blog in the past), but this is not one of them. Instead of saying they couldn’t give adequate medication, those staff caring for David should have been calling for a man/woman who could. Let’s not confuse the two issues.

, , , , , , , , , , , , , , , ,

Comments