With the end in mind - Palliative Matters readers treated to excerpts from the book.

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With the end in mind - Palliative Matters readers treated to excerpts from the book.

The author of ‘With the end in mind',Kathryn Mannex, has chosen the following excerpts for Palliative Matters readers to enjoy.

With the End in Mind: a short resource booklet.

It’s never too early to think about how and where we would like to die, but it’s far more usual to leave it until it’s too late. After a long career in palliative care, this is something I would really like to change.

This booklet is an extract from a book of stories about how people live while they are dying, and how we can plan ahead. Here are the short section summaries from the book, along with a directory of useful resources, and a template letter that may help you to say the really important things to the people who matter most to you. The book is intended to offer insight and help to people who will one day die: so that’s all of us.

I hope you find these ideas, questions and prompts useful.

Patterns: recognizing the way we die

The gradual, predictable sequence of events as we die used to be familiar; as medicine has progressed, dying at home has become more unusual and our familiarity with dying has been lost. Knowing what to expect is immensely comforting to the dying person and their supporters. 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.

Have you ever been with somebody while they died? These stories describe real dying: in many ways, more gentle and comforting than most people expect. In what ways might this information affect your view about the experience of dying?

When you are dying, where would you like to be? What are the pros and cons of being at home in your own bed (perhaps moved to a more accessible room); or staying with a relative or friend; or in hospital; or in a Care Home; or in a hospice?

If you have seen a death that appeared uncomfortable or shocking, how have you dealt with that memory? Understanding what happens to our bodies and minds as we die could allow you to re-evaluate what you experienced, and reduce your distress.

My Way: how we like to do things, and how we sometimes get each other wrong

Human beings are highly resilient. We adapt to adversity and find ways to maintain our inner peace as best we can, even while we are dying. Often, we use coping patterns that we developed very early in life: if you’ve always ‘put on a brave face’ then that becomes your preferred way, and you may find it difficult to understand someone else who copes by sharing their distress out loud. Neither person is coping better or being braver than the other; one simply finds inner peace by venting whereas the other’s peace comes from feeling self-contained.

If you are a ‘take control and plan the details’ person, then it can be tough for both of you if you are sharing a distressing situation with a person who copes by thinking about everything except the challenge ahead: one person’s avoidance is in direct conflict with the other’s need to plan, and this is stressful for both of them. Finding middle ground in which to meet and work together requires sensitivity, tact and patience, and may even need the help of a trusted third party.

The stories offer some insights into the widely different strategies people use, usually completely spontaneously and often without any insight into their behaviour. These coping styles, and others, pop up again and again: you may recognise them and their impact on the situation. You may recognise types of people you know very well – you may even recognise your own style.

Everybody prefers to manage things ‘My Way.’ The end of life is no different.

Naming Death: because if we don’t say it, we can’t discuss it

We have begun to lose the vocabulary of death. Notice how often you hear euphemisms like ‘passed,’ ‘passed away,’ ‘lost’ in conversations and in the media. Do you and your family avoid the D-words? 

If you were approaching your own death, who would be the important people to tell? Who do you hope would tell you if they knew that their own death was approaching?

Is death something the younger members of your family feel allowed to talk and ask about? Don’t assume because they never mention it that they don’t know. Even young children may try to avoid upsetting adult family members if they get the idea that a particular subject will cause distress if spoken about.

Are you a person who likes to make every plan explicit ahead of time? Or do you prefer to just carry on and deal with things as they arise? If you were dealing with life-threatening illness (your own, or someone dear to you), what are the benefits of your preferred way of doing things? Are there any drawbacks, for you or for the people close to you?

Do you know what kind of care your loved ones would like as their life’s end approaches? Or have you assumed that you can guess if you need to?  

If you were close to dying, would you prioritise being as awake and alert as your condition would allow, or would you prefer to be sleepier and less aware of the situation and the people around you?

What balance do you see between the length of time you live, and the quality of life you are living? Do you think that, if you have a choice, you would choose to accept or to forego treatments that extend your life if they do not restore quality? Would you prefer to live for as long as possible even if it means being supported by machines in an intensive care unit, or to make plans that declare at what level escalation of treatments should stop, to focus on comfort instead of prolonging life? Do you feel confident that, if you suddenly became life-threateningly ill, your closest family and friends would know your wishes and preferences about your care?

These are big questions. They may take several conversations to work through. Do consider taking the time to discuss them now, rather than waiting until it becomes a matter of life or death. The staff in the Emergency Department, the rapid response team or the ambulance will be so glad to know that you have made your wishes clear. And so will the loved ones who become suddenly charged with the responsibility of representing your views at a very challenging time.

If you already have a serious medical condition, consider asking your GP or hospital specialist about what particular emergency situations it would be wise to plan for. In many areas, people can have plans written to describe what care to put in place if a foreseeable crisis arises. This avoids emergency ambulance dashes and unnecessary or unwanted hospital admissions, whilst making sure that people whose crisis requires an urgent response (and sometimes appropriate admission to hospital) get what they need.  You can request clarification of whether or not a non-resuscitation order is appropriate for you, and you can decline any treatment if you don’t want it – but you need to make sure that the important people involved in your care know your wishes.

Legacy: leaving hope and appreciation instead of a mess

What legacies have you already inherited from people now dead or no longer known to you? Perhaps material things like books, ornaments, money. Perhaps mementos like letters, postcards, or their modern, electronic equivalents. Possibly stories handed down your family. Maybe you were encouraged as a child by a particular person, or modelled yourself on people whose qualities you admired. These are all forms of legacy.

What legacy have you already generated? You may have given birth to children or to innovative ideas; you may have taught a grandchild how to use a screwdriver or how to see pictures in the clouds; you may have founded a major company or grown a garden. You may have borne sorrow with courage that inspired other people, or quietly supported another in their time of need.

What legacy would you like to leave? Perhaps you are an organ donor; perhaps you have gifted a legacy to an endeavour you wish to support in your Will; perhaps you are already preparing memory boxes or albums for your loved ones.

By modelling a way of dealing with a truth that society tries to hide, you can begin a legacy that calls death by name, accepts that it is a part of life, and encourages others to do likewise. Who would you like to support in becoming less fearful about dying? How might you engage them in talking about wishes and preferences in later life or as death approaches? How might you help each other in this task?

Looking Beyond the Now: what’s really going on here?

Stepping back to find perspective is a challenge: it requires the insight to acknowledge that there may be another way to look at a situation, and the humility of being prepared to examine our view, and even to change our mind. It may be easier to step back if we approach life in an attitude of curiosity rather than certainty, feeling intrigued by what we may discover for and about ourselves.

Stepping back is not easy, but always illuminating. This section of stories includes a variety of challenges to re-interpret a world that already seemed thoroughly known. For example, in one story a young doctor was certain about what a patient needed needed; his nurse was wise enough to step back and see the bigger picture, and a better way of helping.

Working with people whose minds may be confused, we can step back and often hear their concerns, hopes and wishes expressed through the muddle. Working with people whose plight may seem unbearable to us, we can step back and find that their focus is still clear and worthwhile to them. Around a deathbed, we can see a group of people sensing, discovering and affirming the connection between them, or the sense of kinship that is forged between strangers at a hospital or hospice, brought together in the shared and deeply emotional experiences at either end of life.

Transcendence: making sense of our own mortality

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 that death is approaching?

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 recurring Last Messages that dying people are so often preoccupied by, who would you like to thank? And what for? Is there a way to let them know about 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; can you think of a way to atone for your offence? If this is causing you great concern, consider talking to a counsellor 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 now 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 – but do that as well as, not instead of, telling them how much you love and treasure them right now.