In 1949, an estimated 81% of all deaths happened at home, compared to today when 60% of us will die in hospital. With death becoming increasingly medicalised, we can feel more removed from it, and as we are living longer, we are confronted with it less frequently.
The truth is that I have no idea what my father's experience and thoughts were on death, as we rarely discussed it, not even during the closing stages of his chronic illness. There was just so much else to talk about – the grandchildren, the garden, the next Grand Prix, and was all that travelling taking its toll on Hillary Clinton?
What I do know is that when it came, at the age of 84, my father's death was peaceful and dignified, in the quiet hospital room where he spent the final three weeks of his long life. One of the key factors in this was the Liverpool Care Pathway (LCP), which ensured he had "joined-up" pain relief during his last hours.
Approved by the Scottish Government Health Department, the LCP is "an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life". It stems from the hospice movement pioneered nearly 50 years ago, which made significant progress in providing a "good death".
It is a way of allowing a patient to die peacefully, by taking a multi-disciplinary approach involving the family to identify necessary treatments to ensure a dignified, pain-free death. At its heart are the principles of regular review, communication, and avoiding needless suffering. It must be flexible to the needs of the patient in all aspects and is frequently reviewed so that, on the rare occasions when someone shows signs of improvement after going on to the LCP, they can be taken off it.
Lately, however, the LCP has been the subject of less-than-supportive headlines citing cases where patients were put on the pathway without the family's consent, along with the more lurid claim that it could be open to being used prematurely as a means to free up beds.
The principles of the LCP seem above reproach, but it may be the implementation – particularly the way health care professionals communicate with families – that gives rise to many concerns.
At such an emotionally charged time, relatives can be preoccupied, our concentration so poor that we may even require things to be written down, rather than being told to us verbally. At this stage it is critical for doctors, nurses and others to adjust their communication appropriately to the needs of relatives, whether that be explaining in layman's terms what is proposed, giving written information or offering to meet again at a better moment. The LCP must also respect any pre-stated wishes of the patient concerned.
It can be frightening for families to contemplate that there can be no reversal of the medical condition and to accept that the best that can be offered by the health service is a peaceful and dignified death.
Dr Des Spence, a general practitioner in north Glasgow, points out that best practice of the pathway involves good communication, implementation and supervision, and that it would be a step backwards if the LCP were to be limited or done away with.
In his column in the British Medical Journal, Dr Spence recently reflected on the way that the LCP, along with committed district nursing teams, are transforming care for the better. He recalls that 25 years ago, junior doctors received no training in end-of-life care, which often resulted in patients having to endure hopeless interventions and resuscitation. At worst, says Dr Spence, "patients were left screaming in pain in the dark, and behind unmarked curtains were undignified and peaceless deaths".
He explains that the LCP is "a guide, not a set of rules" and adds: "When and where we have used it, the LCP has worked well, as it means that whether someone is being cared for at home or hospital, organised medication is there so that people don't die in pain."
During the 15 or so years that my father lived with heart failure, pain was not the main issue. It was the gradual deterioration of a never-off-the-go gardener and hill walker into someone weak and frail, who was in out and of hospital and eventually had to be cared for almost full-time by my mother.
While heart failure can be unpredictable and erratic, my father was a success story in terms of his longevity. I believe this was largely due to the GP and heart nurse who monitored him closely, my mother's unstinting care and dad's thrawn spirit. A farmer's son and the third of 14 children, his active rural upbringing – fishing, stalking and cutting peats – stood him in good stead in terms of health and fitness throughout most of his adult life.
As grandfather to my three daughters, he would have us all climbing, or in his case strolling, up Ben Hope or Ben Loyal, but his insight and experience meant he also knew when to turn back on a climb.
The nature of heart failure makes it difficult to gauge how well someone is coping, but as my father's health gradually deteriorated, the garden became the most reliable barometer of his condition. If the hedges were trimmed and the roses in bloom, we could exhale.
Two years ago, the garden began to look a little less animated. For a while, with clever planting and a lot of weed killer, he was able to keep up a degree of pretence that all was well in the garden he had cultivated from a rough field some 50 years ago.
In line with our family philosophy, my father had planned the garden to a certain degree, but had also left room for spontaneity and areas of controlled wildness. When he had to relinquish his claim on it, he would sit at the window like a cormorant on the shore, watching our cack-handed attempts at pruning the roses.
There would still be the occasional visit to the garden centre for coffee and supervised plant buying, but by the middle of this year even that modest excursion became impossible. However, his mind remained razor sharp and he took pride in beating my mother at Countdown.
By the spring of this year, dad was completely housebound and dependent on my mother, and when his lifelong friend, also called Hugh, died in August, it was clear a lot of the fight had gone out of him. Eventually, after nights of pain and restlessness, my father was admitted to hospital.
During his first two weeks in hospital, while clearly unwell, he would enjoy visits from his granddaughters. As a man of faith, he shyly informed me that in spite of his infirmity he prayed for us all every day, and also hoped I'd given up driving barefoot.
There came a time when, in spite of all the treatment, care and attention, my father began to suffer from a more acute sort of pain. By that final week, it was as if mentally he was quietly withdrawing from everyone except my mother. We couldn't have contextualised it at the time, but we had moved on to a different phase.
Mark Hazelwood, director of the Scottish Partnership for Palliative Care, explains: "In its essence, the LCP provides the clinical team with a set of prompts to think about, once it has been recognised that someone is in the process of dying.
"It is not a treatment, but rather a framework to help doctors and nurses provide good care for a patient who is dying.
"There should be communication with the family, and the patient (if well enough), to discuss the treatments they might be on and consider whether they are causing distress or discomfort and no benefit and should be stopped.
"They would also consider what medications are likely to be needed to manage symptoms, so that these can be made available without subsequent delay. The clinical team will regularly review the condition of the patient and think about what adjustments to care may be needed to maximise comfort.
"The pathway was originally developed for people dying of cancer but is now used in a wider range of conditions, which can sometimes make it more difficult to identify when someone is reaching that dying phase."
Two days before my father died, it was obvious he needed continuous pain relief, instead of waiting for each dose to wear off. When a loved one is crying out in pain, you don't want to say, "hang on a moment until the nurse comes", hoping against hope that pain will indeed be relieved.
Neither life nor death is a flawless narrative, but because my father was on the LCP, when he woke up next morning in distress, pain relief was administered by the nursing staff; a syringe driver was set up later. The real benefit of this device is that it allows continuous administration of pain relief and is easily adjustable to the needs of the patient, eliminating the peaks and troughs of symptoms that are difficult to control by other forms of medication. Oral medication is often distressing to the patient at this stage and can cause more problems, particularly when the patient is having difficulty swallowing, while other forms of administration are ineffective as the patient's circulation shuts down in the later stages of life. The syringe driver causes the least distress to the patient, and the most effective delivery of pain relief.
This was certainly the case with my father. We sat by his bedside all day and night, grateful that he was settled and free from pain. My father died peacefully in the early hours of the next morning – a difficult journey made easier for all of us by the Liverpool Care Pathway.
The "Good life, Good death, Good grief" initiative exists to raise awareness of ways to live with death, dying and bereavement. www.goodlifedeathgrief.org.uk
For further information on the LCP go to www.liv.ac.uk/mcpcil/ liverpool-care-pathway
