With the End in Mind

by Kathryn Mannix

  I have spent a lifetime pondering this idea. And gradually, I have begun to see a pattern. It is, in fact, a truth that almost all of the people we have the privilege of meeting towards the end of their lives are extraordinary. They tolerate their symptoms with courage. They adjust their hope from avoiding death to embracing each day as death approaches. They can let go of the tyranny of planning and worrying about the future, and simply bask in the present. This was so eloquently expressed by the dying playwright Dennis Potter in his final broadcast interview, when he described his new-found discovery of the ordinary, appreciating the blossom on the plum tree outside his window as ‘the whitest, frothiest, blossomest blossom that there ever could be, and I can see it’.

  These people change the centre of their world from self to others. They focus on loving their loved ones, but that kindness also beams onto everyone else around them–their fellow patients in hospital or hospice, and all of us who care for them. They are the patients who notice that a nurse looks tired or remember that the cleaner’s daughter is sitting exams. They express appreciation, concern and gratitude. And we bathe in the light of their beneficence.

  What is going on here? What is the transformational catalyst that reshapes a grumpy retired coalminer or a previously pedantic professor into a somehow nobler version of themselves? The change does not extinguish their lifelong foibles, but in some way it smooths the roughest edges, so that our inept offerings of care and company are less likely to snag on a sharp temper or ignite an irascible ember. They have become, in some ineffable way, a bigger and more generous version of themselves, and the process is often invisible to them. They simply find that people around them are kinder, gentler, and with more forgivable faults than before. They don’t see that this is a virtue of their own disposition; they credit the world around them for being a better place than they had previously believed.

  In the world’s wisdom traditions, from modern happiness experimental psychology, through the great faiths, and in the atheistic wisdom of Confucius and the stoic philosophers, much has been said about the growth of the inner person over a lifetime as we move towards wisdom. A human life of two parts is recognised in these traditions. The first part of life is establishing our identity and becoming a ‘safe pair of hands’ for adulthood. This first phase of life is, necessarily, egocentric. It is all about me. What am I about? What do I stand for? What are my gifts and talents, my strengths and capabilities? Does the world recognise my abilities? Perhaps there is some self-scrutiny to discern my faults and weaknesses, but that is only to ensure that I can hide them from the view and judgement of others. In this way, over the first part of a human lifetime, each of us identifies who we believe ourselves to be.

  The second part of life is about transcendence to wisdom, and for many people this only develops over a long lifetime. For others, though, there can be an early transition, and this is very often through a personal experience of deep loss and enormous pain–exactly like the experience of knowing they have an incurable illness that our patients encounter; the knowledge that death is approaching, and that it will mean the end of everything they hold familiar and dear. Each of the wisdom traditions describes this transformation process in its own way, yet the key ‘Golden Rule’ of all of them is the development of a sense of compassion for others. The focus moves from ‘me’ to ‘everyone and everything’. This includes a kindness to oneself, and the ability to recognise and forgive one’s own faults in the same loving way that those transformed, second-part-of-life people forgive the faults of others.

  The stories of the people facing death that I have shared in this book are mainly about people who have reached that new phase in their lives. They have become compassionate and wise, they overlook or even embrace the foibles of others, and they relish their sense of ‘being’ in every moment.

  This transformation of world view is a spiritual transformation, whether theistic or not. It enables the person to review their life and to recognise and regret any hurt they may have caused other people, and often to desire to make amends. It is this recognition that underlies the first of the recurring last messages of dying people: ‘I am sorry. Please forgive me.’ It also supports their desire to avoid causing any further hurt, and this translates into a deeper patience with others’ shortcomings.

  Compassion also enables people to review personal hurts in a less judgemental way, and so the second of the last messages is often ‘Don’t worry about it. I forgive you. It is no longer a hurt between us.’ Sometimes dying people seek out those from whom they have become estranged to offer a bridge of friendship. Time, distance or death may prevent this, yet the decision to forgive can still release the person from the hurt. This is powerful stuff.

  The compassionate appreciation of others as people who are only as flawed as the observer, and equally worthy, enables people to be deeply appreciative of those around them. People approaching the end of life are grateful for the tiniest kindness. They appreciate the good intentions behind often gauche expressions of support. They are grateful for the experience of each moment, like the ‘blossomest blossom’ of Dennis Potter. The need to express gratitude to others is another of the last messages. ‘Thank you’ is now a heartfelt statement of appreciation, not a mere courtesy.

  The last and most frequent of the last messages is ‘I love you.’ This is now a statement of total appreciation for the beloved. True compassion recognises yet overlooks the imperfections in the beloved and in the relationship, and simply appreciates the intention to love and to be loving. The love is deepest for those who are dearest, but it bubbles over into even everyday encounters with strangers and staff. In palliative care we look after people who have reached a phase in their lives when they unconsciously radiate love.

  So, of course these are the favourite patients on any ward. Of course it always seems that the best people are dying. These are just ordinary people, like the rest of us, but they are at an extraordinary place in their life journey, and all of us benefit from their compassion. They are not, in the main, ‘saints’. They still have grumpy moments and periods of intense sadness, fear or anger about their fate. But they are examples of what we can all become: beacons of compassion, living in the moment, looking backwards with gratitude and forgiveness, and focused on the simple things that really matter.

  It’s like watching a rose unfurl to perfection. At the moment of its greatest glory it is on the brink of the curling of its petals, the explosion of its colours, and the casting of its magnificence into the wind.

  Pause for Thought: Transcendence

  We have worked through a lot of ideas to get to this point. But here are the really Big Ideas. The evidence is that we all reach the end of our lives with a mixture of satisfaction and regret over our experiences–and the time to adjust that balance is now. Every moment of our lives is ‘now’ as we live it. So what can we do that adjusts the balance towards satisfaction and away from regret, even while we are not anticipating the approach of death?

  What are the values that guide your decisions in life? How well have you met your own expectations? Do you judge yourself with as much kindness as you judge other people? Is there any change you would like to make so that your way of life fits better with your values and beliefs? What first step could you take?

  Thinking about the last messages, who would you like to thank? And what for? Is there a way to let them know of your gratitude? Can you write a letter? Send an email? Shout to the wind? Tell the story of your gratitude to someone who will join you in a moment of appreciation?

  What about forgiveness? Whose forgiveness would you like to seek? And what for? Do you need to apologise to someone, or is it time to forgive yourself? How can you express your sense of regret? Perhaps it’s time to make contact with someone, and to offer the first step towards reconciliation. Perhaps for some reason reconciliation is no longer possible. If so, can you think of a way to atone for your offence? If this is causing you great concern, consider talking to a couns
ellor or a chaplain–no religious belief is required to consult a chaplain, and they have great wisdom in matters of regret and forgiveness.

  Perhaps you are the offended party. Is there anyone you would like to forgive? Does anyone need your reassurance that a past quarrel or misunderstanding is no longer a grievance between you? How might you let them know? Do you have a mutual friend who might take a message? Can you telephone or write? Can you get together or use video-links to share a chat? Or is it enough to decide to forgive, to let the hurt go and move on?

  And then there is all that love to be communicated. Sure, you can leave letters and cards and material goods in your will. But it’s so much more meaningful to say it in person, or to write now, and give them a chance to know that you love them while you are still here. For children and grandchildren, share your happiest memories by annotating photos and letting them see the collection of childish drawings and letters you have kept over the years. Write letters for their future big occasions: finishing school, starting work, graduation, getting married, special birthdays–and do that as well as, not instead of, telling them how much you love and treasure them right now.

  If you are struggling to start, have a look at the letter template in the Resources section at the end of this book (here). You could photocopy it and fill it in, or you could just use the words and add your own.

  It’s your life that you are working on finishing well. It’s a mighty piece of work. Give it the attention and the time you deserve.

  Last Words

  After sitting at so many deathbeds, and accompanying the final parts of so many people’s journeys, a peculiar familiarity with dying becomes a daily companion. Strangely, this is not a burden or a sadness, but a lightening of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time that we can really experience is this present, evanescent moment. This makes hard times slightly easier to bear, and good times immediately precious. Both happiness and disappointment will pass in time. Awareness of the temporary essence of all lived experience is humbling. That is why Roman generals who were granted a Triumph (a congratulatory public parade to mark their accomplishments) were accompanied in their chariot throughout the pomp and cheering by a slave whose role was to remind them of their mortality, and that this moment too will pass.

  The folk stories of every society include quests for immortality that almost always come to a bad end. Or they tell of immortals whose deathless nature condemns them to loneliness. Or, most significantly of all, they speak of immortals who sacrifice their immortality to live a mortal life, for the love of a human being. The distillation of a civilisation’s wisdom into its folk tales shows us that immortality is recognised as a poisoned chalice. Death itself is perceived by ancient wisdom as a necessary and even welcome component of the human condition: a finality that ends uncertainty or despair; a mandated temporal boundary that makes time and relationships priceless; a promise of the laying down of the burdens of living, and the end of the repeated daily struggle.

  In sharing the stories of so many ordinary people as they reached their final days, I hope that I have shown that, in the end, none of us is ordinary, that each unique individual is extraordinary in their own way. As we approach the ends of our lives, we experience a shift in perspective that allows us to focus on the most important things in our own domain. This shift is both poignant and freeing, as these stories illustrate. Living is precious, and is perhaps best appreciated when we live with the end in mind.

  It’s time to talk about dying.

  I have. Thank you for listening. Now it’s your turn to talk.

  Glossary

  Every profession has its own language of technical words and abbreviations that make sense to co-workers but that may mystify the non-initiate. Wherever possible, I have tried to avoid medical jargon to allow the reader to understand what is unfolding even where the medical concepts are not simple.

  However, there are non-technical words that will be familiar to users of British health services, but that may not be clear to non-British readers. Here are some terms I have used throughout the book, and their specific meanings in Britain.

  NHS: National Health Service. In the United Kingdom, all health- care is paid for by the government using public income-tax-derived monies. This means that all healthcare is free to patients at the point of delivery, whether they see a doctor in a local health centre, require an ambulance in an emergency, visit a hospital out-patient clinic, or are admitted to hospital for investigations and treatment.

  Hospice: In 1967, Dame Cicely Saunders opened the first modern hospice, intended to deliver palliative care–care focused on quality of life at the end of life, rather than on extending life expectancy at the cost of any quality. She was building on the example of tender terminal care she had witnessed in St Joseph’s Home for the Dying in Hackney, London, in the 1950s.

  Hospices were a political reaction against the ‘treatment whatever the burden’ philosophy of cancer care in the 1960s. They were largely charitable institutions that worked in collaboration with local NHS partners, but rarely received NHS funding.

  By the 1980s, UK hospices were specialising in whole-person care for people with incurable illnesses. Since then there has been a gradual shift from cancer-only services to care and expertise in reducing symptom burden for people with a wide variety of life-limiting conditions. NHS funding now partially supports the work of most hospices, and there is a national NHS strategy for palliative and end-of-life care that encourages cooperation between NHS and charitable providers of palliative care.

  It is worth noting that, in the UK, hospices are mainly specialist units for management of complex physical, emotional, social or spiritual needs, and not merely end-of-life-care nursing homes.

  Palliative Care Team: As recognition of the value of palliative care has grown, hospices have been unable to provide the advice and support needed across the country. Teams of palliative care specialist nurses, supported by a doctor with specialist training in palliative medicine, and often also by other experts in fields like physiotherapy, social work and chaplaincy, have been established both in hospitals, where they offer a consultation service to all wards and departments, and in the community, where they visit patients at home and advise their primary care team about symptom management.

  Ward: Hospitals and hospices have in-patient areas, which may include single rooms or bays with several beds. The ‘ward’ is the whole collection of beds that is supervised and cared for by a single team of nurses. When I first qualified, we largely used ‘Nightingale wards’ in the NHS: long wards with two rows of beds, with the sickest patients closest to the nurses’ station, from where all patients were visible to the nurse in charge. Modern hospital wards are divided into smaller bays, which provide more privacy for patients, but make it harder for the nursing team to maintain surveillance of the sickest.

  Sister: The nurse in overall charge of a ward, a department or a community nursing team is the Sister (or charge nurse if male). The title is probably a remnant from the days of nursing orders of nuns. ‘Sister’ is in charge of the whole team, and responsible for the standards and outcomes of nursing care twenty-four hours a day. Although gradually being replaced by the term ‘charge nurse’, the title of ‘Sister’ is used with great respect (and usually affection) by public and staff alike.

  GP (General Practitioner): A community-based doctor with expertise in managing the health of adults, children and babies. Usually working at a health centre (often referred to as a surgery) in teams supported by nurses and possibly also by pharmacists, physiotherapists and other expert clinicians. The GP is the first point of call for routine medical queries, and is responsible for a patient’s ongoing care after discharge from hospital. They are trained to maintain a breadth of medical knowledge and skill in a wide variety of disciplines.

  Primary Care: Care run and administered by health and social care professionals based in the patient’
s home, health centre or other community setting. Secondary care is hospital-based, and highly specialised treatments, only available in specific hospitals, are referred to as tertiary care.

  Cognitive Behaviour Therapy (CBT): A psychological therapy approach initially developed to help those with emotional disorders like depression, anxiety, obsessive-compulsive disorder or panic, CBT helps people to identify how their thoughts and actions are triggering or maintaining their emotional distress, and to learn strategies that restore their emotional balance. Since the 1990s CBT has also been shown to be effective in helping people who are coping with physical illnesses, by building their resilience, their coping skills or their strategies for dealing with the effects of their condition.

  DNACPR: ‘Do not attempt Cardio-Pulmonary Resuscitation’ is a medical order that is made when, for one or more of a variety of reasons, it has been decided that resuscitation efforts should not be made if a person’s heart stops beating and/or they stop breathing. This allows natural dying to proceed. Reasons for a DNACPR order may include the patient’s own preferences and decision, or a medical decision that their physical state is so frail that they would not respond to resuscitation attempts.

  A DNACPR order does not refer to any other treatments apart from resuscitation: all other treatments should proceed as usual, for the benefit of the patient, unless they have been specifically declined by the patient, or have been deemed unnecessary by their medical advisers following a Best Interests Decision.

  Best Interests Decision: Refers to making a decision on behalf of an adult who does not have the mental capacity to make that decision for him/herself. Under English law, the decision-maker must take into account any known views or wishes of the patient. These views and preferences may have been recorded by the patient in writing, or told to someone they trust, or may simply be reports of conversations with family and friends. The process is intended to try to reach the decision that the patient would have made, had s/he had the capacity to do so.