end of life care
Documented wishes
Three weeks ago I told you about the real life ethical quandaries I was grappling with in relation to representing my sister’s wishes now she was unable to speak for herself. Sadly our experience degenerated rapidly when she tested positive and was transferred to a Covid bay on a different ward and under the care of a different consultant. No visitors were allowed, and I found myself powerless to defend her or indeed speak to anyone above the grade of Health Care Assistant or junior doctor. She was totally alone, 300 miles away, and her documented wishes were being ignored.
It was only when her condition deteriorated further that I was told I could have 10 minutes, maybe even 30 minutes, with her. Finally I had an opportunity to plead her cause in person. To my horror and disbelief I found that
– no one had even bothered to read her advance directive
– a doctor told me ‘nobody pays attention to a bit of paper’
– the consultant believed he had the right to dictate; his personal preferences for ‘striving officiously to keep alive’ at all costs, over-rode a legal document
– I was subjected to a brutal inquisition about every potential aspect of my loved one’s dying.
I share this in the spirit of underlining the reality. No matter how carefully and sensitively you might prepare for a situation like this, the ethos of one person can completely wreck your plans. And please don’t let’s hide behind Covid. The previous consultant had been exemplary … he showed it could be done remotely.
Mercifully, I knew I had right on my side, I had a sacred responsibility to fulfil, and I absolutely refused to be cowed. We transferred my sister to a wonderful care home where futile interventions were abandoned, my brother and I could be with her throughout the dying process, day and night, and both she and we were cherished and cared for with respect, dignity and love. Death came peacefully and naturally.
My heart goes out to all those families who have no one to defend them. All those who have been separated at this crucial time in their lives. All those whose memories are forever scarred by insensitivity or officiousness or deficient systems. I feel a need to be a voice for them too.
But for now I pay tribute to a wonderful sister, the most selfless and kind person I know Though her own life was chequered with tragedy, she never complained, but focused her energies on helping others. A shining example. And a hard act to follow!
Reflections on Mortality
The 2018 Festival is proving to be as spectacular as ever – so much talent, such variety. You’d need to be a complete Philistine not to find something to your taste and I’m having a ball. And there’s so much to soak up around and about the city besides the featured events. During a visit to Blackwell’s book shop for their Writers at the Fringe event, for example, I noticed a book display dedicated to the 70th anniversary of the NHS, several of the exhibits talking about the art as well as the science of caring, and as I sat waiting for the five authors to begin their presentations, it got me thinking.
Wouldn’t we all love to be cared for by a truly empathetic compassionate doctor in our last months, weeks, days? I found one recently – one moreover who recognises that ‘Doctors – like writers, artists, and spies – are professional people-watchers‘. Sounds like my kind of person, huh?
I’ve been intimately acquainted with death since the age of 18. To some extent health care professionals have to learn to maintain a safe distance in order to keep on giving, but it’s a difficult balance to achieve. I once worked with a lovely young doctor (who has been my friend for over forty years) who was so nervous when he had to convey bad news that he giggled. As his colleague I understood it was because he cared too much for his own comfort; the relatives couldn’t know that and were probably appalled by his seeming insensitivity.
Asian American doctor Pauline Chen learned through bitter experience too, and she’s taken the brave step of writing about the difficulties and pain of contemplating death and walking alongside people facing its reality in Final Exam: A Surgeon’s Reflections on Mortality. Like most naive youngsters she entered medicine with a rosy view of saving countless lives; she had no idea of the extent to which death would become such a haunting constant in her career. But in a society where more than 90% of patients will die from a prolonged illness, she joined the ranks of those whose task it is to shepherd the terminally ill and their families through the intricacies and pitfalls of the end, those who are expected to know how to provide comfort and support.
Initially Chen discovered from her mentors and teachers how to suspend or suppress shared human feelings, to adopt the twin coping mechanisms of denial and de-personalisation. At first, too raw to be let loose on patients, she learned to detach from the elderly lady cadaver in the dissection lab where the formaldehyde, used to preserve dead bodies pervaded her clothes and hands and hair – the olfactory version of a high-pitched shriek. Once out in the clinical arena, she had far more disturbing senses to deal with and she learned to avoid, obfuscate, reinvent, disguise, deny.
‘Even medical students chosen for their humanitarian qualities and selected from a huge pool of applicants may have their generous impulses profoundly suppressed by their medical education.’
But gradually, painfully, she came to realise, through a multiplicity of small inconsistencies and troubling paradoxes, that these techniques were in fact incapacitating her. She began to extricate herself from those same learned responses and to open herself up to something far more rewarding than curing someone. She came to see that when terminally ill patients were ‘Pushed to view their own mortality directly, they too would live the remainder of their own lives that much more fully than the rest of us.’ New dimensions, wider horizons, opened up to her: that, in fact, ‘… dealing with the dying allows us to nurture our best humanistic tendencies.’ And she came to appreciate the advice of a much respected colleague who was both oncologist and cancer patient: ‘You’ll be a better doctor if you can stand in your patients’ shoes.’ That the ‘honor of worrying – of caring, of easing suffering, of being present – may be our most important task, not only as friends but as physicians, too. And when we are finally capable of that, we will have become true healers.‘ I love the idea of it being an honour to worry and care.
Final Exam is a beautifully crafted book, from the simple but evocative cover and the so-apposite title page, through the quality paper, to the single tribute on the back from one of my favourite medical authors, Atul Gawande:
‘..a revealing and heartfelt book. Pauline Chen takes us where few do – inside the feeling of practicing surgery, with its doubts, failures, and triumphs. Her tales are also uncommonly moving, most especially when contemplating death and our difficulties as doctors and patients in coming to grips with it.’
In telling the stories of many of her patients alongside her own, Pauline Chen has generously shared what it means to have the grace and humility to examine our own imperfections and misconceptions, to learn from the honesty, pain and sorrow of others, to become a more empathetic and warm human being. We don’t need to be practising health care professions to learn from her example.
Good care? What is it?
Well, October has begun with a rash of developments in my world.
To 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.
This 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.
Fifty 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.
Reflections from the sofa
It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.
There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.
My own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.
I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.
I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.
But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.
I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.
My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.
At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.
See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.
I’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.