‘The rishika gave us a chance to say goodbye. We can never repay her for that.’
This is a line from Chloe Benjamin’s novel ‘The Immortalists’
I think it is very good.
The sentence however reflects my recent thoughts relating to death and dying.
I am sure by now, some readers are sighing, ‘He’s not doing death again…’ – yes, I know this is a subject I have addressed before and, I know, these days of prolonged life-spans and wonder-drugs it is not something that many people whose lives do not intersect with healthcare will encounter; yet.
You see, there is a tension.
It relates in part to the success, the scientification of medicine. The sense that as we can treat virtually everything and cure a good number of diseases, we have reached a point in our evolution, because we can, we should or must.
I’ll give you an example. (Fictional composite)
Jemima is a 96-year-old woman. She has been living at Holy-Acres Nursing Home for the past year since she fell and fractured her hip. She is frail. She can’t get out of bed, because of fear, pain, anxiety. She has dementia, diabetes, rheumatism, asthma, high blood pressure, epilepsy and skin cancer.
You might think, ‘How has she lived so long with all that?’
Well, strange things happen.
Anyway, this time, despite her, what we call ‘multi-morbidity’ or in long-form, multiple, long-term chronic conditions, she has pneumonia.
She is barely conscious when the ambulance delivers her to the hospital.
Her oxygen levels unrecordable, blood pressure intermittent.
Some of you will be thinking about Jemima’s interesting name, the life she must have led, her family, relations.
Others will see, low blood pressure and oxygen levels – drip, ventilation and antibiotics.
Where should the emphasis lie?
It is very difficult as the doctor in the emergency department to determine all the details, some nursing homes will have sent Jemima with a detailed list of her wishes, and preferences detailing her abilities, quality of life and so on; others will have done, ‘habeas corpus’ and transferred her in her night-gown with nothing else.
It is not uncommon for the whole of modern medicine to be thrown at Jemima – X-Ray, CT, blood gases, catheters, sophisticated intravenous antibiotics and so on.
Essentially, without good information it is difficult to determine whether or not to treat, or in the words of modern medicine, palliate – even with almost a century of life.
Therefore, we act.
Jemima, a little more oxygen running through her arteries, her blood-pressure moderately increased is admitted to hospital.
Family have not yet been contacted.
Jemima is eventually (depending on seasonal NHS pressures), transferred to a bed on a ward.
She remains very ill.
Gordon and Sheila her son and daughter are called. They arrive, it is three in the morning.
The senior doctor on the medical unit has reviewed Jemima, determined that she is very sick and met with the family.
A ‘Do Not Attempt Resuscitation’ is completed.
Treatment however continues, the drip, oxygen mask, catheter, blood pressure monitoring (every 15 minutes, as per protocol).
Sheila and Gordon sit, holding Jemima’s hand, wondering what will happen.
You see, there is frequently a disconnect between action and perception.
Drips, observations, needles and antibiotics, because of the usual successes of medicine are often considered a move towards cure.
It is this cocktail of treatment, in situations of clinical futility, where a 96-year-old has a minimal chance of survival that overlaps with a prolongation of dying.
And this reflects on the beginning excerpt.
Had the focus been on allowing Jemima a natural (or, good) death – in more familiar surroundings (acknowledging she has not lived at Holy-Acres for very long, at least however, the smell of her bed-spread is consistent), with family surrounding, perhaps talking, joking, remembering better times, summer at the beach on Anglesey kind of thing, without the intrusion of blood pressure monitors, drips and alarms, ward phones unanswered, pressure-area care, and so on, imagine.
What would have been better?
There is no one answer to this, after all, we are each individual, and what is right for one person is not necessarily true for another.
Yet, most of us would probably agree that had there been the forethought to anticipate this situation the outcome (experience – memories, meaning) might have been different.
You can’t criticise the doctors for doing what they are trained, although they could be perceived as being complicit in allowing the system to ‘take the reigns’ rather than the person, the family.
What is important?
To me it is the message, ‘Your mum is dying, let us ensure she is as comfortable as possible, why don’t you call your family.’
Without this, and, without the palliative care which supports these words (i.e. stopping the drip, the oxygen mask and continuous repositioning to avoid pressure ulcers), the family often don’t ‘get it’ – the mixed messages of treat and care are blurred, their remains a kind of hope or fear or dread, the sentiment is complicated and the mitigated phone call, ‘Your nan is very ill’ is communicated instead of, ‘grandma is dying,’ with proportionate consequences.
I think we often underestimate the importance of the last hours and days of life, the meaning that can be extracted; sure, it is the relationship you have over the decades, the love, support and care you demonstrate in deed that really makes the difference; showing-up in the last moments isn’t stealing the show, yet, the opportunity. Where do we go from there?
Ambiguity creates confusion.
Use plain speech.
Say what is.
Deeds and actions must match expectations and certainties.
Don’t be shy, say what you think, even though it is difficult.