Take my hand

It is hard to find a piece of palliative care policy or a newspaper article without it being accompanied by pictures of hands – they have become a ubiquitous symbol of end-of-life care.  Just as images of the human skull  have been incorporated into mainstream fashion to the extent that their symbolic potency has become diluted, it seems that hands are increasingly becoming the standard representation of what it means to care for someone at the end of life.

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I recently completed 186 hours of observations of care of the dying in an acute hospital.  It has surprised me that it is people’s hands, not necessarily their faces, that appear in my mind’s eye as I read through my field notes.  One day I was struck by the remnants of silver sparkling nail varnish on a woman’s fingernails; I never met her awake, she died a few days after I arrived.  As I sat, I found myself gazing at those hands, wondering about who had painted them, whether she was still awake and talking to them, how long it takes nail varnish to grow out.  I saw wrinkled, liver-spotted hands, scrawny, emaciated hands, oedematous hands, long nails with unidentifiable grime caked beneath them, rheumatic gnarled hands, twisted out of shape, cold hands, warm hands, clammy hands, fingers that grasp at blankets, pluck at air, and wave away invisible imagined insects, clenched fists, trembling hands, palms turned upwards in surrender or clasped together in prayer.

Families sitting vigil by bedsides of dying loved ones sit transfixed as they watch the rise – stop – fall – stop of the slowing breathing that heralds death’s imminent arrival.  In this time of waiting there is little to be said.  This is when hands often do the talking.  Merleau-Ponty points out that in the evolution of language, gesture predated speech by many years.  Gesture was the immediate conveyance of emotion or intent to another person.  As speech became more abstract, less onomatopoeic, the things to which the speech referred became more distant from the things themselves.  The potency of gesture is rarely reflected in the words used to describe the emotion.  Hands often convey emotions that might be suppressed in facial expression and there is an increasing body of evidence that looks at they ways in which hand gestures can supplement the emotional content of words and faces.When my father-in-law was dying, the only we could tell how he was feeling was in the way he gripped on to the cot sides of the bed, as though he was frightened of falling, as though he needed to feel something solid.  If we asked him what was wrong he would frown, fumble for words, and then more often than not tell us nothing was wrong.  Even though he only died a few days ago, the image of his hands is more powerful in my memory than even his face.  His left hand, contracted from a stroke, long, elegant fingers clasped around his palm, tight, clammy.  His right hand and it’s tremor, as he raised the cup to his mouth, determined to drink without help.  The texture of his aged skin, my husband’s strong and smooth hands holding his father’s trembling ones, stroking them, relaxing the tightened muscles, unfurling and massaging his fingers one by one.

I often hear families being told that when they are sitting with a dying person -“keep talking…the hearing is often the last sense to go…they can hear you”.  This may be comforting to some but in the absence of getting any reciprocal communication people might be left wondering whether this is in fact true – how would we know? Nobody has ever come back from the dead to say “I could still hear you, you know”.  Talking to someone, while comforting, is a one-way process.  Touch, however, even if there is no movement or signs of conscious recognition, is two-way by its very definition.  In touching someone, one is touched.  For Radman, the hands is an organ of the mind, a place in which there is a point of connection between a person’s internal world and the outside expression of their feelings.  So touching a person’s hand becomes a bridge between inside and outside.

Human contact of skin on skin is a profound means of connection in the absence of words or sense.  To touch someone else’s hand is the essence of intersubjectivity – in touching, one is touched.  There is a reason that we often call emotions “feelings”, rather than “sightings” or “sounds”, and this is the inextricable connection that can be made through touch; the neuroscience of this is explored by David Linden in “Touch: the Science of Hand, Heart and Mind”.   The further one is from a person in physical space (for example standing by a bedside, being on the end of a telephone, or writing an email) the more one has to rely on language as the primary method of communicating.  To have an intersubjective experience with someone on an emotional level arguably requires that one is close enough to hold someone’s hand.  In midwifery, skin-on-skin contact between a mother and her newborn baby is recognised in practice as centrally important for bonding, for health, for wellbeing.  But in end-of-life care this contact is sometimes seen as a fluffy add-on, an optional extra that is a “nice” thing to do, alongside the more important pamidronate infusions, pressure relief and catheterisations.  There is evidence suggesting that people tend to experience less touch as they age, and the times when they are touched by health professional tends to mostly be in the “instrumental” sense; that is, touching for a particular purpose such as having blood pressure monitored, physiotherapists assist in mobility, enemas, catheters, wound care and so on.  The idea of therapeutic touch is not officially recognised as a part of bodily care work, and not captured in any care plans.  The literature shows numerous references to therapeutic touch in care of dying children, but not so for older people.  One study found that of 149 observed examples of touch between a nurse and older patients, 142 were instrumental, and only 7 were expressive.

For Levinas, touching someone’s hand is the most basic way of engaging in another person’s world: “one hand touches the other, the other hand touches the first; the hand, consequently, is touched and touches the touching – one hand touches the touching.  A reflexive structure: it is as if space were touching itself through the man”.  Hands have existed as potent symbols throughout history, in the artistic representations of cultures throughout the world and history.The hamsa, an image of an open hand that has been traced back to Mesopotamia, is a symbol of protection and of strengthening the weak.  “Laying on” of hands is also a powerful religious symbol, for example in Christianity where it reflects anointing the sick or baptising the dying.

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I would favour touching a person’s hands over talking, and this is based on no evidence whatsoever, just an intuition that I have.  Listening to words requires enough attention and concentration to discern the meanings of the words.  Touch requires less in the way of interpretation; a comforting touch is a comforting touch.  And if this touch is accompanied by a familiar voice then it doesn’t really matter what the voice is saying, the essence is that the dying person is not alone.

Perhaps hands do epitomise person-centred care.  Perhaps this is why the image of hands being held has become so commonplace in palliative care.

All the time in the world … and all we have is now

I had a lovely time last week.  I talked about death for seven days.  I don’t mean that lightly, flippantly, facetiously. Contrary to popular opinion, I am not a morbid goth, fascinated by skulls and graveyards (apparently I have earned the title “Queen of Death” from a colleague. A dubious title for a Macmillan nurse and teacher).

My week of events spanned four counties and consisted of 2 death cafes (Bradford and Hebden Bridge) , one conference, nine talks, two workshops, four exhibitions (Rotherham, Leicester, Hebden Bridge and Bradford), zero budget, and many, many conversations.  I don’t want to list all of these the events here, but I would like to try and capture here why the week felt so important to me, professional and personally.  The vivid moments.
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When people talk about death with a stranger, the veneer of social conventions begin to peel away.  In a death cafe the uniting feature is explicit permission to talk about death.  So without any need for weather-speak, or the perpetually baffling “what is it that you do?” it is possible to say “why have you come today?” and immediately see the person.
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So Isobel (not real name) whose mum-in-law died two years ago and who still couldn’t understand why her partner and his father grieved so differently, one taking every opportunity to talk about her, the other closing up like a sea anemone in rough waters.  We talked about grief, it’s confusing, unpredictable nature.  We talked about tears at funerals.  We talked about how we rewrite stories of those we have lost to make them squeaky clean and perfect.
Or Desmond, energetic and vital at 87 years old.  A committed Christian who is still making sense of an experience in his twenties that can only be described as a spiritual vision, an “inflow of grace”, that he believes happened to reassure him that death is not the end.
Or Eve (name not changed, she’s my daughter) who observed that she a bit busy at the moment to think about life in general, but when she does stop and think about when she hasn’t been doing anything she realises you can’t get those moments back.
Or Esther, a single mum from the West Coast of the States, in the UK to do a research degree, who suddenly realised she hadn’t made a will and wondered what would happen to her little girl if she died.
Or Sanjit, the engineering student who wondered out loud if his grandfather was dying, but didn’t understand why nobody at home talked about it when it seemed so obvious to him.  He mused about how he would like to talk about it if it were him, to make sure he’d said the things he wanted to say, and to make sure that he could be at home with his family.
Or Katie, a childrens’ nursing student, who when baking a mountain of cakes for the Death Cafe dropped and spilt flour all over herself and the kitchen floor.  On the verge of grumpiness she was suddenly struck by the preciousness of life and realised how often we get wound up and upset about things that ultimately really don’t matter.
Or Aaron, who didn’t see his baby daughter until she was four because he was in prison.  When asked what he wants to be remembered for he says “I want my girl to know that it doesn’t matter how crap it gets, you can always turn things around.  Nothing stays the same forever.”
Or Adrian, who felt like he said goodbye to his mother several times as she travelled the delicate and long road of Alzheimers, that it had taken years to not feel guilty at the relief he experienced when she eventually closed her eyes permanently, that he could remember the good parts again now.
Or Mary, who having managed to be spectacularly unsuccessful at committing suicide as a young girl, became a community activist and trainee death doula who travels regularly to local hospitals to support people at the end of life, and has noticed that the only things that really matter are love and honesty.
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The play “Learning to Die” by Luca Rutherford offered a raw, funny and hearty window into the world of chaos, of death being always unexpected, of the rupture that it creates in normal world that – for a time, at least – allows us to suddenly see the ridiculousness of life and our day-to-day priorities (“green tea, not coffee, in case I don’t get time to drink it straight away.  Coffee is horrible when it goes cold, green tea is still nice”).  The song played at the close of the play was the one played at the death of my friend Josh .  I sat and cried, relieved to be in the company of people who didn’t mind tears.
At our conference a mother spoke about navigating the uncertainty of living with dying, of knowing that her beautiful daughter is going to die but not knowing when.  She shared how along with the exhaustion and fear that this brings, there is a richness and a purity to daily life that shines through her words.  An appreciation of the moment, I guess.  Sometimes it is only when time is short that we realise this, but it doesn’t have to be this way.
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We heard from Martin Neal about Groundhog Grief -the way that people with dementia can forget, again and again, that someone that they love has died, and the ethical and emotional issues that this raises for the people who care for them.  Jan Oyebode considered the nature of continuing bonds, the ways in which people sustain connections and memories of relatives and ancestors long after they die, and the ways in which these can offer a source of strength in difficulty times.  Karina and I introduced our archeology study also exploring continuing bonds, albeit in a slightly unusual way.  It was a week full of conversations, thought and reflection about mortality.  Yet it was far from miserable or morbid…
Death is a perpetual threat that dictates our daily choices, our societal norms, our attitudes towards others, other inclination to help the sick and needy.  But mostly we do not think about it, at least not consciously.  But death, a little like the monster under our bed, is scarier when it in peripheral vision than when we look  it in the face.  Epicurus thought that there was no point in worrying about death, since when it happens we won’t be conscious of it anyway.  But I don’t think death is what most people worry about; I think people are scared of the process of dying, of disentangling ourselves from our worlds, of losing those we love, of facing indignity and suffering.  In an increasingly secular world, it often becomes less a matter of the afterlife and more a matter of this transition from life to death that causes concern.  We worry about meaninglessness, we wonder about what it has all been for, we puzzle about why we get close to people even though we know we will lose them one day.

The Buddha tells a story of how a woman named Kisa once sought his counsel to heal her dying child; he advised her to go and obtain a mustard seed from a household in the village.  The only condition was that this seed had to be obtained from a household where nobody had died.  The woman bounded off, joyful that the Buddha had offered to perform this healing ritual, to fend off death in her sick child.  From house to house she travelled, asking the same question.

Of course, she found no such house.  Every home was affected by death, everybody has experienced the sting and gaping void of loss.  With time Kisa came to know this, to return to her child and sit with him until his last breath.
We seem to have forgotten this wisdom.  Death is fended off and defeated at every turn, our medicine becomes stronger and better and more advanced, our technology enables us to perform microsurgery, replace broken parts, extend our warranties seemingly indefinitely.  When death arrives it is a shock, an affront, a failure.  Because it so often accompanies the withdrawal or withholding of a medical treatment, it becomes a matter for blame and analysis, a decision for a (very human) doctor to make.  Not rescusitating someone is viewed as giving up on them.  Identifying someone as in the last year, or last days, of life is synonymous with sentencing them to death.  But death is as natural as birth, and as inevitable.
For me, the week fell just before submitting my MPhil Transfer Viva, and brought some revelations about work-home balance (“really?” says hubby… “you only just realised this needed attending to…?!”) and the rapidity with which children grow and change, the daily choices we make about being present or being absent, and the ways in which neglecting to look after ourselves has consequences for those around us.  I’ve made choices in the light of the weeks’ events about my own life.  I have also noticed more about those around me, realised how ubiquitous is the impact of death and grief on our communities.
Ultimately, thinking about death is really about life.  It is about our priorities and our plans.  Stephen Levine’s visionary book “A Year to Live” asks us to think about what we might do differently if we knew out prognosis…and then challenges us as to why we aren’t making these changes now, given that in reality none of us know what is around the corner.  What would change in our relationships, our routines, our perspectives, if we were genuinely aware of our mortality?
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So reflecting on Dying Matters Awareness Week 2015 I have one conclusion: it is not sufficient to talk about it for one week of the year.  Carry on talking.
Talk about death with friends, families, neighbours, people at the bus stop.  Make plans and then do them.  Create harmony in your communities.  Look out for people who are alone and grieving.  Smile at strangers.  Enjoy the rain as well as the sun.  Don’t wait until people are gone to tell them what your deepest heart says.  Do it now.
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Hug in a Bag

When my mother-in-law attended hospital to find out the results of her recent biopsy, I went with her. Neither of this really had any doubts about the results; 15 years on from her primary cancer diagnosis, she had enjoyed being free from the disease, without ever feeling free from the disease. The consultant sat on the bed beside her chair, leant forwards and asked her whether she thought she knew what he was about to say. “Yes”, she nodded. The words afterwards were spoken slowly, gently.
They weren’t that important to either of us, the words.  We had talked about the decisions to be made and she was not in any doubt … Further scanning to check for metastasis, decisions to be made about treatment, arrangements to be made for respite care for my father-in-law,  chair bound and immobile and at home. In and amongst the blur of words  a canvas bag was handed to her. On the side, in large purple print, it read “Hug in a Bag”.
On the way home there was silence, but not of the awkward kind. More of that taking-stock type, where the earth has tilted slightly on its axis  and one needs to recalibrate from the inside.   We returned to the house to 3 sets of anxious eyes, my daughters and my father-in-law. She had a perfunctory conversation with him, matter-of-fact, explaining what happens next. The girls asked questions, they got answers that were clear and unambiguous.
And then.
And then what? Silence.  A kettle clicks on.  A space opens.  In the aftermath of days of anticipation and tension there is finally a peculiar relief.  Even when it is bad news it is news of some sort, it relieves the pressure built up through that waiting, waiting, waiting.  That afternoon, the living room looked the same, the view of the frosty garden out of the window was identical to the one we had left earlier in the morning. The television still blaring meaningless daytime shows on gardening, cooking, travel.  There arose a peculiar limbo space, it made me think about liminality (see my e-hospice blog on this).   There were days and days to wait before scan dates would be sent, each of these days following the same structure of the previous months; four visits from bright-eyed brash carers each day, to help Derek wash and dress and be hoisted from bed to chair, chair to bed.   But the clock that shaped those familiar days was different to the new one that had now been set in motion, a clock ticking the arrival and departure of scans, treatment, hope, anxiety, change.   We all shared a lost and aimless feeling that afternoon.
Then we remembered the  “Hug in a Bag”.  She began rummaging through it – she didn’t know what else to do.  It was packed full of gifts and business from businesses around the area for women newly diagnosed with breast cancer. There were pamper sets and make up (quickly claimed by the girls), a scarf handed to me (“it’s not my colour”), lotions and potions (“Ooh this will be lovely, my feet have been SO sore”), a pretty notebook and pen (“I’ll write my questions for the doctor in here”), a teddy.  And a voucher for a family portrait session that led to a long conversation about photographs, ancestors, the future and the past (and a couple of weeks later to a chaotic photograph session, complete with dogs and children under instruction to tickle us seconds before she snapped our images – she even captured a grin on my teenage daughter’s face, by asking her to be as grumpy as she possibly could until the inevitable crack in her composure: “click”)
Since, I have discovered that “Hug in a Bag”  is a not-for-profit organisation set up by three women who met during their cancer treatment.  Their aim was to stop women feeling alone during that strange and difficult time.  The bag gave all of us a reason to congregate, to talk about stuff, for my girls to share their blossoming womanhood with their grandmother through talk of lipstick colour and the pros and cons of filing your nails and heels.  She is not a make-up kind of woman, and I do have to confess that many of the cosmetics goodies ended up in the hands of my girls, but the bag gave us an afternoon of grateful distraction, conversation, closeness.  We were struck by the kindness of those who donate – people who know that there is not anything to say in some situations, but that conveying compassion through acts of kindness goes a long, long way.  And those who realise that a woman is always a woman, however old her skin and however scarred her body.  It offered all of the family a moment to reflect on this.
On the way home in the car, my youngest stated that she was going to sort out all her old clothes and toys to seek and make money for “Hug in a Bag” so that “other ladies can have a pamper and feel happy and beautiful instead of worried”.
Thank you @HugBlackpool – find out more at http://www.huginabag.com/blackpool/ or see their Facebook page at https://www.facebook.com/pages/Hug-in-a-Bag/192746400860881

A good death?

How can we ever know if someone has a good death? We can’t ask them, that’s for sure, though if we could I am sure we would find out some interesting things about what we assume people would like as they die.

Richard Smith based his recent BMJ blog on the death of a friend, proposing that cancer offers the “best” death (of course, in a world where nobody really wants to ever die). He posed his presentation of the death from cancer as a peaceful one, in which there was ample time to say goodbye to loved ones and visit special places.

Smith’s description of the “slow erasing” of self that occurs with dementia betrays far more of his own views of dementia and the ageing process than it does of a generally accepted view of good death. It appears that a mistrust of doctors is also at the core of Smith’s view of the good death. Deaths from non-malignant chronic organ failure are summed up in a single line – this type of death will have you “far too much in hospitals and in the hands of doctors”. The final line of his blog cautions us to stop trusting over-zealous oncologists and spending so much money on cancer research. As a devotee of the palliative way, I too take issue with inappropriate treatment and the disproportionate spending on research between oncology and it’s poor siblings, palliative care, dementia and organ failure. I would love to see that level of funding used to improve the control of difficult symptoms, or invested in researching psychosocial care, or exploring the barriers to discussing wishes around death and dying for people with different conditions and at different ages. Spending money researching individualised cancer treatments and biotherapies is important; but the spending is disproportionate to the priority given to spending money on the quality of death and dying.

I think there is a more fundamental issue here than whether people “trust” oncologists, or withdraw funding from research. There are many people breathing and living today as a result of the miracles of medical science. What is missing in the achievement of a “good” death that I think applies not just to cancer but to dementia and organ failure too, is virtue-based medical practice on behalf of the physicians. Oncologists are rarely over-zealous for the sake of it; over-interventionism in disease is more likely to be a consequence of poorly managed helplessness in the face of disease, something which not all doctors are taught at medical school. This helplessness can make it more difficult for doctors to rely on the phronesis (or prudence) that constitutes virtue-based medical practice. It is just as important a skill for a physician to be able to explore and understand the priorities for an individual person around the end of their life, as it is for them to investigate and treat disease ad infinitum.

Our views of what constitutes a “good” death are profoundly influenced by our own and society’s values, yet these values are often so deeply embedded that we cannot even see how closely we are attached to them. So it is obvious that in a society which values youthfulness and vigour, a death characterised by a “long, slow death” and accompanied by various losses of function (incontinence, immobility and so on) will be seen as awful. I think an individual’s perspective on what a good death is can tell you a great deal about the person’s values, and this in itself can help to guide many of the difficult choices that need to be made along the way. Smith’s view of the good death is a brave piece of writing in one respect; it tells us about what he considers to be important at the end of life: avoiding unnecessary intervention, being with family, and having time to say goodbye. Many people will share these views; they are all important things to consider when making choices about treatment and place of care at the end of life. In my opinion, these three are no less possible with a diagnosis of dementia or organ failure, if the person is aware from the beginning that their condition is a life-limiting one. I have witnessed many kinds of deaths; difficult, messy and painful, peaceful, spiritual and painful – in my experience this is not dependent on the disease. I believe that this is dependent on the person being empowered to make choices, supported not just by professionals but by a community that recognises the particular nature of their suffering, and seeks to ease it.

So what is a good death? I ask this question often, of members of the public, student nurses, qualified nurses, hospice staff and physicians. The answers are always different. In the words of Barbara Coombs-Lee, co-author of Oregon’s “Death with Dignity” law “I can’t presume to know what anyone else’s good death looks like. A good death is one that comports with the way we’ve lived our lives, with our manifest values and beliefs. And that is going to differ for everyone”

Some reading about “The Good Death”…

Mary Talbot, in “Aeon”

James Green “Beyond the Good Death: The Anthropology of Modern Dying”

“The Good Death” – Open Educational Resources

Ken Murray: “How Doctors Die”

Breaking the rules: truth and lies

I recently participated in a TweetChat that focused on the care for a disorientated and distressed woman with dementia (if you have never joined in a TweetChat before I highly recommend it, see here, though you may require a cold compress across your eyes and your fingertips submerged in icy water after an hour of rapid-fire tweeting).  There was a lot of food for thought, but I wanted to blog about a brief exchange debating whether it constitutes dishonesty for the nurse to “join in” the patient’s (futile) search for her son.

The issue of truth-telling is interesting, particular in the context of caring for people with dementia.  Nurses are taught from their first day as students of the importance of truth-telling.  Current health policy places patient-centredness centre stage and reminds us that patient autonomy and choice are key.  These ideals are what apparently sustains collaborative care and renders patients active participants in their care.  However, much research about truth-telling looks at truths in relation to medical diagnoses rather than how to talk about other aspects of a person’s life.

Where truths are avoided in order to protect the patient from harm, as in the cases observed by Lesley Fallowfield, it is clear that misguided paternalism can cause immeasurable harm. In not divulging information about a patients’ condition, one is potentially denying that patient the right to make informed decisions about their care, and from preparing themselves and their loved ones from difficult times ahead.  The risk of collusion is also a very real ethical dilemma that can result from selective truth-telling.

An alternative perspective is that unconsidered truth-telling, particularly in palliative care, can compromise hope and that there can be situations in which there is a moral justification for withholding truth.  Of course, truths can be withheld not just in the perceived interests of the patient, but out of self-protection on the part of the health professional.  If withholding a truth (or telling a falsehood) means a lower likelihood of difficult conversations, then it is clearly not the patient’s interests that are central to the decision.

The issue of truth-telling in dementia care is a little more complex.  Partly because of this, and perhaps partly because I have been thinking a lot about all those young men who lost their lives in the first world war, I was recalling recently a resident I met in a nursing home where I was placed as a second year student nurse.

The placement stuck in my memory particularly because of  “Agnes”, an 83-year old resident with severe Alzheimer’s disease.  She had been living in the nursing home for the previous 3 years, ever since her daughter had suffered a stroke and become unable to care for her.  A widow since wartime, she was prone to ruminate about her husband, searching for him continuously.  She would often be found in the kitchens, ambling through the patch of woodland in the grounds, or in other residents’ rooms.  Each time, her explanation was the same: “I’m looking for Monty”.

Her daughter had described this had been happening at home, prior to Agnes being admitted to the home.  Initially the nurses felt that it was important to be truthful with Agnes.  The matron sat her down and gently, slowly, patiently explained that Monty had died in the war, several years previously.  The pain and grief in Agnes’ eyes was something I would never forget.  It was as though she were experiencing her loss afresh.  She wept, screamed, clasped her hands to her mouth, rocked back and forth on the chair while clutching her hands to her belly, the tears seemed interminable.  A nurse took her by the hand and they walked through the lounge and out into the grounds.

Her weeping subsided as she was momentarily distracted by a cat slinking through the patio doors and out into the trees.  A few minutes later, she turned to the nurse and said “I’m just off to find Monty, do you know where he is?”

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She had no recollection of their conversation.  Or perhaps she had suppressed it, unable to bear the pain which it elicited.  Or perhaps she knew that Monty had died (on an unconscious level) but this manifested as a refusal to believe it. Those in favour of the “process” models of grief such as Elizabeth Kubler-Ross and Colin Murray-Parkes might identify that Agnes was trapped in denial, unable to move through her grief until she had accepted the reality of Monty’s untimely death.  My own view is that grief is in our very bones.  It doesn’t matter how aware you are of the facts, nor is it helpful to locate a person on some imaginary conveyor belt of grief from which they will one day emerge, intact.  Grief settles into your being.  To lose one’s love in war must be among the most unbearable things.  I am not surprised Agnes had a hard time accepting it, decades later.

So was the nurse in this case “right” to tell the truth to Agnes?  Is it “right” to tell patients about all aspects of their care always, or does this need to be balanced anew with each situation, based on a careful weighing up of risks and benefits.  Our culture places high value on truth and autonomy.  The default position is one in which the good reputation and trustworthiness of healthcare professionals is based on an assumption that they are honest at all times.

For someone who is able to decide for themselves whether they want the truth, warts and all, this is less of a problem.  A consultant that I worked with in palliative care would regularly ask her patients whether they were the kind of person who liked to know everything about decisions that are being made, or not.  This enables an understanding of what the individual person and their family wanted in terms of honesty.  It certainly made subsequent conversations clearer and less fraught, as the information provided could align with their expressed preference for balancing hope and realism.

However, for someone with severe memory problems such as occur in dementia this is not an option, and so the default position is often that of truth-telling.  But this does not necessarily avoid the risk of harm, as seen in the example of Agnes, and in similar case studies.  One of the ethical frameworks frequently used in practice is that by Beachamp and Childress which encourages consideration not only of autonomy, as already discussed, but of non-maleficence – first do no harm.

Interestingly, the Hippocratic Oath contains nothing in relation to whether the truth should always be told.  Our current emphasis on patient involvement and autonomy is as much a product of living in a society founded on individualism as it is a universal aspect of practice.  Indeed, we only need to look at other epochs in the history of medicine to see that truth-telling is a fairly recent development.  It hasn’t always been a core part of medical practice.

But there is a potential slippery slope.  If we acknowledge that it can sometimes be acceptable to withhold the truth from people with dementia, it could lead to unacceptable practice, such as residents being told “white lies” to stop them from interrupting staff.  The ideal is of course be that any decision about withholding truth in relation to such significant events is made carefully and with the person’s interests at heart, with the explicit aim of minimising both short and long term harm.

Interesting in Agnes case, Monty’s death was several decades before she developed the signs of dementia.  The fact that she had regressed to a state in which she considered that Monty was alive made me wonder whether even before her dementia she had struggled to accept the reality of his death.

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According to Worden, the first “task” of mourning is to accept the reality of a death.  Without this key task, he suggests that it is difficult to integrate change in ones grieving.  If Agnes had been unable to believe that Monty had died before she developed the signs of dementia, it is hard to imagine that she could be any more likely to accept the reality of his death now.

After the matron’s initial conversation with Agnes, described above, no member of staff mentioned his death again.  When she was found to be looking for Monty, with her forehead furrowed and faltering steps, the nurses would take her hand and say, gently “I’ll come with you to look for him”.  This wasn’t a lie.  The futility of the search was not relevant.  The important thing was that Agnes felt recognised and acknowledged in her bemusement.  There was a supporting hand on hers as she shuffled down the corridors.  And when she smelt the toast in the lounge and the nurse suggested they go and have a cuppa, her smile was genuine and for a moment she had lost her tormented lost look, and was back in the present moment.

Caring for people with dementia who are grieving requires continuous attention to the fine balance of harms and benefits.  I would argue that deciding not to bring up the subject of Monty’s death was permissible given not only the harm that resulted from telling her the truth, but also the fact that she would invariably forget the fact after a while, and begin again her task of searching everywhere for him.  I am not advocating a collusion of pretence in relation to her loss, or that she is told and outright lie such as that he has not died.  Rather, I advocate noticing and paying attention to her emotion and behaviours in the moment, rather than trying to contextualise or explain the reasons for them.

The rules let us down; there is no one-size-fits-all “right” thing to do, and each person we encounter brings a new ethical and moral challenge.  One of the core questions we ask when recruiting new student nurses is “would I be happy for this student to care for me/my loved ones?”  The same kinds of rules can be applied to truth-telling – “what would I want?” “Am I making this decision to make life easier for myself, or is it born from a genuine compassion towards this person?” Attending to the emotions that accompany the searching might be the most authentic way to relate to somebody in this state. No lie is needed if the response is to the emotions rather than the facts:-

“I’m looking for Monty.  Have you seen him?”

“I’m not sure.  You look a little troubled, shall I come and walk with you?”

The Alzheimer’s Society have produced some guidance on how to help people with dementia who are grieving. They emphasise the importance of consistency to minimise the risk of confusion where the person hears different stories from different people.  Close observation is required, perhaps paying attention to what sorts of triggers lead her to begin searching for Monty.  Perhaps it happens when she is tired, or when a certain resident who may have a similar accent is speaking.  If this is the case, it might be that carers are able to anticipate the trigger and even if unable to remove the trigger, be able to be particularly present at these times and to offer opportunities for distraction or routines that are familiar and safe.

If I imagine myself with dementia my immediate thoughts are that I would want to be told the truth.  I would not want to be patronised, I would not want decisions to be made on my behalf, and I would like to be allowed to respond in my way to whatever challenges the “truth” will present.  And yet, if the information I was given was traumatic and distressing, and I was likely to forget it again, I might choose ignorance over knowledge.

Last year, my grandmother mistook me for another relative, who died several years ago.  When I reminded her of who I was, she said “oh yes, silly me”.  She then told me all about the other relative, her memories of family meals and events were crystal clear.  She did not mention the illness or her untimely and difficult death; her memory had somehow blanked out this traumatic part of the story.  All that she was left with were the pleasant images.  She mused out loud that she wondered where Claire was, and what she was up to these days.

And we left it at that, as she fell asleep.

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Tea, cake and mortality

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I sat gazing at the rain through the cafe windows, heavy drops pounding down on the gutters overflowing with fallen leaves, the scent of autumn’s slow decay.  I reflected on a friend’s recent response to my announcement that I was travelling to Kings Langley to help host a Death Cafe, along with friends and colleagues from St Francis’ Hospice, at Dallings Cafe in Kings Langley:  “Hmm, that sounds cheery.  Prefer a Life Cafe, myself”. On that grey day I could not help but wonder if she was right.  Why on earth would anybody want to come and talk about death?  Even if there is the promise of cake and fine coffee, it is hardly a way that most sane people would choose to spend an afternoon.

When I was working as a Community Macmillan Nurse, I would often be in the strange situation at parties and social events where a stranger asked me “so, what is it that you do?”.  Apart from the fact that I never know how to answer this question (I breathe, I love, I doubt, I worry, I sleep, I eat, I crave..) I realise that this is a socially acceptable way of finding out the chosen vocation of a potential conversational partner at such gatherings, as a means of filtering out the boring, the threatening, the unethical and the just plain weird.  My response that I am a Macmillan Nurse tended to lead to one of three responses:

The death-avoidant
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“Ah, yes.  Well.  (…long pause…) Oh, there’s (so-and-so), must go and say hello, it’s been simply ages

(What I might wish I had responded, had they not already scarpered to the bar: “I’m guessing you may feel a little anxious and threatened by this mortality salience reminder?”

The Misguided

world+war+angels“Oh wow.  You must be such a nice person”

Well actually, no.  We nurses are complicated and messy and no more “nice” than anyone else.

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“I had a really amazing / difficult / profound / awful time when my mum /dad / child / friend / guinea pig died.  It was…….etc”

It is for this last group of people that the Death Cafe exists.  When and where else are we afforded the opportunity to reflect on this most important topic?  Rarely do we find ourselves in an environment where these subjects can be broached.  People may wonder about death as an abstract idea, for example what happens to the body afterwards, or what it looks like when someone dies,  or perhaps they may wish to think about how to put plans in place for their own deaths, to try and achieve whatever they conceive of as a “good” death.  People may also wonder about how someone died, whether it is recently or long ago, and wish to revisit or reflect on things they have seen or done.

This last point was made evident by the first visitor to the death cafe.  He sidled up to the table, a tremor in both hands.  I guessed his age at around 70 although couldn’t be certain; despite his evident Parkinsonism he had sparkling eyes and a strength to his voice that belied his frail frame.  He wanted to reflect on the deaths of his father and mother.  His father died over ten years earlier; a stroke, followed by a slow inexorable decline until bedridden.  He described his fathers’ last days in detail; the difficulties swallowing, the dry, rasping sound of his breath, then the final day – where he watched each labouring exhalation and held his own breath in the seemingly endless space before his father breathed in again.  Health professionals would recognise this as Cheynes-Stokes breathing; we are patently aware that it signifies imminent death; the reduction of respiratory control to the reflexive, primitive hypercapnic drive, free of conscious control.  The man described how he was uncertain as to whether to lie his father back or to sit him upright.  Having decided to lie him down, he sat by the bedside and watched over the next few hours as his father drifted towards his final breath.  He tells me this was ten years ago, that he has always wondered whether lying him down was the right thing to do.

Another man arrived.  He also had a tale to tell.  His story was about a death that happened sooner than expected, his wife, of a futile resuscitation attempt on the bedroom floor with his 13-year old son standing witness.  He wanted to tell his story, he told me, because he had three wishes about his own death: that he would have control over who would be present at the end, that he would be supported spiritually and emotionally. and to be able to make decisions in advance.  This last was because he would not want to have had the resuscitation that his wife had, nor would he wish for anyone to have to witness it.  Death Cafe 1Other folk came and went; some peered around the corner, reminding me of how difficult people find it to begin the conversation, even though once they have got started it becomes easier to discuss.  Some sat and listened, some joked (my father, for example, who decided he was not planning on departing this mortal coil until he has sailed the Atlantic single-handed).  People talked about what songs they would choose for their own funeral; this led to long discussions about songs which represent you, about the mood you would like to create for your funeral guests.  The chosen songs were added to a playlist and played over the hum and murmur of conversation.  Tracks were chosen that evoked memories, made people chuckle, made people cry, made people head-bang, imparted words of wisdom – Leonard Cohen, Led Zeppelin, Flaming Lips, along with Nina Simone and Lynard Skynard.Death Cafe 2The numbers of visitors was not large, but those who came left enriched and energised, enquiring about future events, thanking each other for the opportunity to speak honestly and openly.  And the Dalling’s Death Cafe was not simply a chance for people to talk; for me, it was a reminder of the normal everyday yet utterly invisible place in everyone’s life that is occupied by thoughts of death.  It was a reminder of work still to do.  There remains a deep need for support, and open and honest conversations with people who are faced with death, for the health professionals who encounter it daily, for the bereaved millions who walk around with unresolved questions burning inside.  People seem to benefit from this brief permission to allow death awareness in, to let it seep into everyday parlance.  It is only death awareness that will ultimately enrich our appreciation of the precious and brief gift of life we have all been given. Death Cafe 4For more information, go to www.deathcafe.com

Chaos, Contingency and End of Life Care

“The choices we’re working with here are a block universe, where past, present and future all coexist simultaneously and everything has already happened; chaos, where anything can happen and nothing can be predicted because we can’t know all the variables; and a Christian universe in which God made everything and it’s all here for a purpose but we have free will anyway.”
― Audrey NiffeneggerThe Time Traveler’s Wife

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The laws of nature are the only ones that should be obeyed.  All others are contingent products of transient societal values.  What nature dictates should happen, happens.

One of the key principles driving the natural world is that of chaos.  Chaos refers to a state of disorder; it is characterised by unpredictability, mess and disruption.

Even when events have known causes which can be determined, some systems are so complex, delicate and sensitive that the long-term outcome of the system can never be predicted with accuracy – even though it is deterministic.  In chaos theory, an often used example is that of a butterfly flapping its wings; the tiniest of air disturbances contributes in one small part to the eventual development of changes in temperature and air currents which lead to the generation of a hurricane, hundreds of miles away. The “butterfly effect” refers to the way in which the tiny actions or events can cause significant changes in systems that are particularly sensitive to certain influences.   Even though we can break down the constituent causes of a hurricane into data that can be processed and understood, this will never enable us to accurately predict the ultimate consequence of the initial disturbance to the system that took place with the delicate flap of a butterfly wing.

The amount of disorder in a system is measured in physics in terms of entropy; the potential for chaos refers to the number of ways in which a system can be organised.  Naturally, two books on a shelf can only be ordered in a relatively small number of ways.  But increase this to thirty, make the shelf double-depth, and add a sizeable stack of papers and a half-empty mug of coffee, and the number of configurations of that shelf increases significantly.  The same is true for systems: the more complex a system is, the more ways of being that system offers.  The natural state of systems is for the systems entropy, or embodied energy, to increase – so a teenager, left to her own devices in a bedroom, will create in a remarkably short space of time a shrine to chaos itself.  Electric leads and chargers, neatly placed in a drawer, will over time render themselves into the world’s most complex spaghetti, ditto knitting wool.

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Complex systems are not unique to physics or astronomy; the human body is a perfect example.  Even though we are able to break down the body into its constituent parts and examine them, and to articulate the complex dynamic systems of the body that maintain its homeostatic equilibrium, it nevertheless never ceases to amaze us when the unexpected happens.  Our hearts may beat in predictable rhythms, each contraction born from the coordinated efforts of actin and myosin as they are energised, yet when this organ is placed within a human being it becomes impossible to predict how many times this heart will beat before it’s final squeezing effort, or of what witnessed natural phenomena will cause it to contract and race.  Chaos is characterised by its lack of order.  Even though the heart may appear to beat in a predictable fashion, providing neat ECG traces or reassuring bounding as we take a pulse, every single beat shows infinitesimally tiny variations.

So if chaos is a natural state, why do we spend so much energy trying to mitigate against it, and seeking (or trying to restore) order?  Terence McKenna, philosopher and self-titled psychonaut, observes that chaos is “what we’ve lost touch with.  This is why it is given a bad name.  It is feared by the dominant archetype of our world, which is Ego, which clenches because its existence is defined in terms of control”.

Death is the ultimate chaos.  It is the time at which the person we thought we were transforms from being into not-being.  In the face of death, the everyday and the mundane can become almost absurd.  Heidegger observes that being human requires that we are hurled into a world that has no clear logical or moral structure, no constancy, constantly faced with the prospect of the end of our own existence.   Humans value freedom and choice – nature values neither.  What will happen, will happen, regardless of most of the effort put into trying to steer the river.  So fear of chaos is commensurate with fear of death, and vice versa.  In general, a person’s attitude towards chaos will look remarkably like their views on death and dying.  This is why it can be incredibly powerful to ask a person how they deal with uncertainty in other areas of life and at different times, as a means of gaining insight into their sources of anxiety around dying.  The same is true of childbirth – ask any midwife. The more elaborate, precise and prescriptive the birth plan, the more things have the potential to go wrong.  but this largely relates to how accepting the woman is to  embrace the unexpected and adapt, the more powerfully transformative the birthing experience.  Advance care plans for people with terminal illness are no different; create a plan, of course.  It is a powerful tool for communicating preferences to a complex and confusing range of health professionals.  But along the way, know that things will change, and a good death perhaps relies less on what and where, and more on the how – How did this person learn to die? How did they surrender to the changes along the way? And how did they make sense of the meaning of their existence?

Embracing chaos requires learning the art of letting go, and trusting in the immutable truth of not knowing what lies ahead of us at any time.  It presents us with a challenge to shatter our tightly held self-concepts and allow things to unfold according to the law of nature.  The heartfelt account by Philip Simons of living and dying with Lou Gehrig’s disease is aptly entitled “Learning to Fall”.  His story conveys the sense that despite being blessed (or cursed) with free will, in reality we have very little choice over the time and nature of our eventual demise, yet depending on how we view this, we can either be shackled or liberated by the revelation.  The sense of chaos invoked by an experience such as Philip’s can lead to liberation and creativity.  Nietzsche reminds us that you “must have chaos within you to give birth to a dancing star.

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Much of the effort in palliative care is channelled into trying to make order out of chaos.  Sometimes this is fruitful; provision of out-of-hours helplines to reduce confusion in the midst of crisis, prescribing of anticipatory medications for the most commonly encountered symptoms of end of life, identifying key workers and discussing coordinated care – all of these are essential elements in palliative care.

But there remains an aspect of care which is challenging to the patient and professional alike; and these is the questions to which there is no certain answer.  “What will happen?” “How long do I have?” In allowing those questions into the dialogue with people about end of life care, there comes a point when the palliative care professional comes face to face with the uncertainty at the core of the role.  And we are then faced with a choice: to feign certainty? This may make us and the patient feel better, certainly in the short term, propping up the illusion of a knowable, quantifiable future.  Or admit to uncertainty and permit hope within it?  Much harder to articulate, but ultimately, and in the opinion of many, far more honest, open and truthful.  Our role is to learn to fall, so that we can help others to do the same.