The patient is bedbound, but her delight is palpable as a stream of visitors arrive bearing gifts of fruit and boxes of chocolates. Her hospital room is so full of life, it resembles a noisy and chaotic family celebration at times.
Yet her large and loving family have come not to herald a beginning, such as the birth of a baby — but to mark an ending.
Patricia, mother of three sons and three daughters, and grandmother to a bevy of teenagers, is dying of heart failure.
Over the next few weeks her energy ebbs away, she starts to sleep for longer and then slips into unconsciousness. Eventually the end comes with Patricia surrounded by her children, their partners and spouses, and her grandchildren. But it is so still and peaceful.
Patricia’s family do a fantastic job accompanying her into death, and afterwards, I tell them so.
Dr Kathryn Mannix (pictured) recalled the defining moments in her career that changed her outlook on death
Later, my colleague and I are sharing a lift with a newborn in a cot, the little one’s proud parents and a midwife on their way to the post-natal ward. ‘What do you do?’ asks the midwife curiously, searching for our roles on our name badges.
‘Much the same as you,’ replies my colleague as the doors open and we walk out. And she is right — in a way. We don’t bring new life into the world. But our job is to help people make the transition at the other end of life’s journey. We help people leave this world — and it’s a privilege every time.
Given my training as a doctor, a role that’s become synonymous with the preservation of human life, it might seem strange that I find so much satisfaction in my work as a palliative care doctor and consultant. After all, I’m not finding cures for fatal diseases or performing miraculous surgical feats that bring people back from the brink. But, as I have come to realise, there is nothing more important than being able to assist someone to a peaceful, pain-free end.
Death is something that will happen to us all. Yet in the 21st century, it’s something that we have become adept at putting out of our minds.
Whereas birth, love and even bereavement are widely discussed, death itself has become increasingly taboo.
Since the second half of the 20th century, better healthcare, new treatments such as antibiotics, kidney dialysis, early chemotherapy, improved nutrition and immunisation have all radically changed people’s experiences of illness and life expectancy.
When it comes to disease and infection there is expectation of a cure, or at least postponement of dying, that even 100 years ago was unimaginable.
Life expectancies have increased — and many lives have been enhanced and lengthened as a result. Of course, it’s a cause for celebration that children no longer die from routine illnesses such as measles, cuts and grazes rarely turn into life-threatening infections and many cancers are curable.
Kathryn believes there is a necessity to discuss the wisdom, vocabulary and etiquette of death which has served in the past (file image)
Yet, ultimately, the death rate remains 100 per cent — no one’s discovered a way to dodge it — and the pattern of our final days, the way we actually die, is unchanged.
What is different is that we have lost the familiarity we once had with that process. When grandparents lived in the extended home, families saw death often enough to recognise its patterns.
Instead, people now learn what to expect from TV, films, social media and the news, but these versions of death and dying are often simultaneously sensationalised and trivialised. It makes us more, not less, scared of what is to come.
And instead of dying in a familiar room with people we love around us, we now die in ambulances and emergency departments and intensive care units, often surrounded by technology designed to preserve life.
It’s understandable that nobody wants to return to the days of high mortality rates. But the downside is that the rich wisdom around death, the vocabulary and etiquette that served us so well in the past, has been lost.
In any given hour, more than twice as many people are born than die
I believe that it’s time to restart the conversation. Because what many of us have forgotten is that — with the right care and the support of those close to us — it is often entirely possible to have a ‘good death’.
I saw my first dead person when I was 18 and in my first term at medical school. He was a man who had died of a heart attack in an ambulance on his way to hospital and the emergency doctor I was shadowing was called to certify his death. Aged in his 40s, the dead man was broad-chested and outwardly healthy looking. At first glance he could have been asleep.
Then the emergency doctor allowed me to listen to the man’s chest. I had never heard a silence so solid, nor listened with such focus. There was no mistaking him now for sleeping. Afterwards I said ‘thank you’, to the dead man for showing me what death looked like.
Five years later and, newly qualified, I was working on a ward with lots of people with incurable illnesses. I found myself signing a lot of death certificates — in fact I earned the hospital record for the number of death certificates issued.
While others joked that I should get an award, inside I was climbing a massive learning curve. Each of those certificates was about a person, after all, and each of those people had family members who needed to be told about the death, and who wanted to know why their loved ones had died.
Kathryn says many people are scared to think about death as they imagine it will be agonising
In my first month of clinical practice I had 20 conversations with bereaved families.
To my surprise I discovered that I found these conversations strangely uplifting, and that I was not afraid of death. Families told stories about the dead person’s talents and interests, their kindnesses and quirks.
I became fascinated by the ineffable change from alive to no-longer-alive; by the dignity with which the seriously ill can approach their deaths; by the challenge to be honest yet kind in discussing terminal illness; by the moments of common humanity at the bedsides of the dying.
For some, death comes suddenly, and that is shocking and hard to accept for those left behind. Others are given plenty of warning that they are reaching their expiry date.
But often people are scared to think about death because they imagine dying to be agonising and undignified, when so often that isn’t true. There is often a pattern to those final days and hours, and knowing what to expect can be immensely comforting to the person who is dying, as well as to their family.
This was vividly illustrated to me as a young trainee in palliative medicine, working in a newly-built hospice.
There is no right way for a person to approach death
Sabine was one of our patients. In her late 70s, she had advanced bowel cancer. As a young Frenchwoman she fought for the Resistance in World War II, and came to England after marrying a British officer who had been hidden by her cell for 18 months.
She had a medal for her bravery, yet she was terrified of dying.
One day my boss, a consultant of many years’ experience, asked if she would like him to describe what dying was like. I was shocked — I thought this was the last thing she needed to hear, yet she nodded her agreement.
He explained that for any disease or condition that slowly shuts the body down (or simply when death comes due to old age), there is a predictable sequence of events; there is a gradual loss of energy, then an increased tiredness that means people spend more time asleep and less time awake. Then they become more deeply asleep, so much so they slip into periods of unconsciousness. Sometimes they wake again and say they had a good sleep, so it seems we don’t notice that we were unconscious. But at the very end of life, a person is simply unconscious all the time.
She says a well-prepared family can be surprisingly relaxed around a deathbed (file image)
Then their breathing starts to change. Sometimes deep and slow, sometimes shallow and faster, sometimes noisy, then, very gently, the breathing slows down, and very gently stops.
He told her there is no sudden rush of pain, no feeling of fading away, no panic — it’s just very, very peaceful. When he’d finished, her shoulders relaxed, she gave a long, deep sigh and held his hand in hers before saying, simply: ‘Thank you.’ Understanding was the best gift he could have given her for a dignified end.
This pattern of dying is something I’ve witnessed time and again. And once we all know what we need to know, we can relax with each other. It’s surprising how relaxed a well-prepared family can be around a deathbed.
But I’ve also learned there is no right way for a person to approach death. Some, like Sylvie, the 19-year-old I treated who had a rare and terminal leukaemia, look death straight in the eye. This teenager’s life would inevitably be cut short, yet she had lived as fully as any woman many decades older.
Determined that her life would make a difference, she had made recordings with her band — she was the drummer — that would be sold after her death to raise money for leukaemia research.
And when I met her three years into her illness — it was my job to go to her home to give her transfusions of platelets vital for her blood to clot — she was making a patchwork cushion from clothes she had worn through her life, from tiny baby- grows to T-shirts. She planned it to be a surprise for her mother, a little bit of Sylvie for her to hold on to and cradle after her daughter was gone. I was in awe of her courage and dignity.
There are only two days in our lifetime that are shorter than 24 hours — the first day and the day we die
Not everyone is prepared to accept what is happening to them — and that is fine too.
Take Sally. Newly married, she talked excitedly of the babies she and her husband Andy would have together — she wanted at least four — and all the travelling they were planning for the future.
What she refused to talk about was the fact that she was dying from a melanoma that had been treated some years before, but had now spread inexorably, leaving her just weeks to live. Yet even though the doctors had been honest about her situation, even as she moved into a hospice, she seemed not to hear what they were saying, continuing to insist chemo would work.
Her attitude was one of positivity and complete denial and while, ironically, she looked surprisingly well, her husband appeared to be fading away under the strain of coping with his wife’s inability to accept her imminent death.
Somehow, I had to work with her family to manage her dying while preserving her denial. Eventually, we agreed that if this was the approach she wanted to take, we had to respect her decision.Being able to say goodbye is an important part of the grieving process but in this case Sally’s family had to say their goodbyes without actually saying goodbye.
But it is possible. So they told her what they loved about her, they shared treasured memories from her life so far and remembered kindnesses they had appreciated. But when she wanted to talk about the names of her children and the holidays she would take later in the year they went along with it and this was how it remained until she slipped peacefully away a few days later.
Support: Ailing Beth (right) comforted by sister Amy in BBC drama Little Women
When it comes to death, more of us should be practical like Dan, a young man born with the muscle-wasting disease muscular dystrophy, which means he will almost certainly die before the end of his 20s. Unlike most of us, he has been forced to confront his mortality. But to help him feel more in control of his life he has written a detailed plan of the sort of treatment he would like, or actively doesn’t want, when it comes to the end, and if he isn’t able to articulate his wishes.
It’s something we should all consider doing. Women often make birth plans that detail the sort of interventions they want during labour. More of us should have death plans.
In recent years death has become a politically hot topic — with the possible legalisation of euthanasia much debated by lawyers and politicians. Many people understandably fear the possibility of unbearable suffering as a consequence of illness or an accident, and euthanasia is based on principles that have quality of life at their heart.
There is no doubt that campaigners on both sides of the debate are motivated by compassion, conviction and principle. Yet the discussion often bears little relation to what actually happens to people as they approach the last stages of living. And even the most carefully thought-through changes to the law can have perverse and unintended consequences.
A policy of euthanasia, for example, raises the risk that people can be left feeling under pressure to accept a premature death — as happened with one patient of mine who had spent time in hospital in the Netherlands before choosing to return to the UK where it’s not legal, rather than enabling them to embrace life even as they’re dying.
Because — as you could see in Patricia’s bedside family get- togethers — it is still possible to find joy and companionship at the end. I have seen many friendships develop in hospices, often between those who would not otherwise have ever met in life, and there is often laughter and joy. Death has its own beauty in a strange way.
And we have much to learn from people in their last days. There’s practical wisdom: for example, I remember bonding with a 98-year-old former economics professor, who advised me how to deal with the menopause when I suffered a hot flush as I attempted to ease the symptoms of her crippling osteoporosis and Parkinson’s Disease.
But we can also learn more fundamental lessons about the way we approach life.
I’ve noticed that people at the end of their lives often display extraordinary qualities — they tolerate their symptoms with courage and let go of worrying about the future to bask in the present. They focus on loving and that radiates on to everyone around them — their fellow patients, families and those of us who care for them. They appreciate the tiniest kindnesses and are the patients who notice a nurse looks tired or remember that a cleaner’s daughter has an exam.
In this way, it often seems that it is only the best people who die. But they are ordinary, like the rest of us, it’s just they are at an extraordinary place in their life journey. They are not ‘saints’ but they are examples of what we can all become: beacons of compassion who are able to live in the moment, look back with gratitude and forgiveness and who are able to focus on the simple things that really matter.
There are only two days in our lifetime that are shorter than 24 hours — the first day and the day we die.
One is celebrated every year, yet it is the other that makes us see living as precious. We should never forget that.
Extracted by Clare Goldwin from With The End In Mind: Dying, Death And Wisdom In An Age Of Denial by Dr Kathryn Mannix, published by William Collins, £16.99. (Names have been changed.)