Tag Archives: death and dying

‘Being Mortal: Medicine and What Matters in the End’ by Atul Gawande

The old saying goes that once you have faced death, you can truly live. Trite but true. Of course we spend much of our lives taking very good care to see that we remain as healthy as possible for as long as possible, but the reality is still that we are going to die.

Atul Gawande, a medical doctor himself,  wrestles profoundly but personally with the dilemma of submitting ourselves to medical systems and mindsets that have been geared to prolonging life at all costs (a great strategy that has us living longer than ever before) but also coming to grips with the fact that at some point the inventions and interventions will no longer work and may actually increase suffering. In this pivotal moment, the important thing to remember is that we are mortal and the choices we make at the end of life need to be more around the quality of life remaining, even if those choices shorten life and involve refusing treatments that are available. The goal should not be a good death, but a good life to the very end. And that will look very different in each unique person, family, and situation. Gawande doesn’t offer solutions, just discusses the issues in a very accessible format.

Gawande talks about nursing homes where the focus on safety can prevent a full and dignified assistance of individual needs. He points out the high value in hospice care as an alternative to further treatment, if that is available and appropriate. Unfortunately hospice is sometimes seen as a giving up or as a failure or weakness once everything else has been tried, rather than a positive alternative to being cared for in the final chapter that leads to fullness of life till the end. Useful and engaging, the stories he tells in the book give a dignified view of those who are in the process of giving up their independence to old age or illness. His models of care focus on living a meaningful life.

Through gently storytelling, the book is also very useful in walking the reader through difficult conversations, accepting hard truths, whether patient or carer.  The final chapter of our lives may have a fullness and a richness we could never have imagined, if the right choices are made. That chapter might include sharing memories, passing on wisdom and keepsakes, settling relationships, establishing legacies, making peace with God, and ensuring that those left behind will be ok. “As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world–to make choices and sustain connection to others according to their own priorities.”

 

‘When Breath Becomes Air’ by Paul Kalanithi

When Breath Becomes Airstarstarstarstarstar“Even if I’m dying, until I actually die, I’m still living.”

Paul Kalanithi, like any medical student, spent countless hours in the hospital, working gruellingly long shifts as a neurosurgeon. So when his back began to ache and he was fatigued, he was not unduly alarmed. However, when he began to lose a lot of weight and the pain grew worse, tests revealed that this promising young physician was about to become a patient himself.

Diagnosed with terminal lung cancer, Paul and his wife Lucy embarked on a journey that was more about living than dying. They decided to go ahead and start a family and their daughter Cady was Paul’s pride and joy, born just months before he died. The early chapters of the book outline the kind of person Paul was–a brave, thoughtful student of literature and philosophy as well as of neuroscience. Even before his illness, he was often occupied with questions about the meaning of life because as a neurosurgeon he was used to making life and death decisions for and with his patients. In addition to becoming a surgeon, he also wanted to write, and he got that opportunity with this book. His poetic prose show what a talent he has. I use the present tense purposefully here, because as novelist Abraham Verghese says in the Foreword to this book, it’s as if Paul is still with us, his hopeful voice still seems to linger in our hearts and minds.

This dying doctor’s gripping memoir is a natural, honest, and unflinching account of his journey. Paul’s willingness to reflect and share and not avert his eyes from death, will undoubtedly inspire and comfort others who are ill or who experience loss. The final paragraph is directed towards his infant daughter and it is breathtakingly beautiful. The Epilogue is written by Paul’s wife, because Paul did die before he could finish the book. Lucy’s voice rounds out the story. I loved hearing from her as well.

I fully agree with novelist Ann Patchett who called this book a “universal donor,” one to recommend to anyone and everyone.

‘Joy in the Journey: Finding Abundance in the Shadow of Death’, by Steve and Sharol Hayner

Joy in the JourneystarstarstarstarstarSteve Hayner, formerly President of Columbia Theological Seminary and InterVarsity, and World Vision Board Member, was diagnosed with a terminal cancer. He and his wife (and daughter) wrote posts in a beautiful meditative diary of trust and faith as Steve went through some treatment but ultimately went from life to Life (what a great way of saying ‘death’). Do not avoid this book because you think it will be sad or awkward to read. This is a brave and honest look at the different stages and decisions of living with cancer that clearly will help others on a similar journey. There are so many beautiful nuggets to collect in it–perspectives, quotes, thoughts, and stories. I know I will be referring to it again in the future.

Death hurts because we were meant for life but we are not without hope. The Hayners capture a powerful message about joy in this book–joy cannot be reliant on our circumstances. Circumstances are too variable to be the foundation of our daily feelings about life. Too often we equate ‘blessings’ with circumstances instead of with God’s loving embrace. We don’t need much help to find joy in the good times, but in the bad times, we need all the help we can get. After all, aren’t we all just “walking each other home” and isn’t dying the only thing we can all be sure of?

This weekend one of our daughters asked me to help her complete a knitting project. Together we looked at the pattern and the yarn and figured out what was what. She was able to proceed and she successfully finished the project, but when she thanked me I replied, “Well, I really didn’t do that much…” She came back with a beautiful line that will stick with me, because it so aptly demonstrates the importance of doing life together. She said, “Yes you did. You helped me to brave the unknown.”

‘Waterbugs and Dragonflies: Explaining Death to Young Children’ by Doris Stickney

Waterbugs and DragonfliesstarstarstarEarlier this year I met a woman who had tragically lost her daughter. We were talking about the impact of death on her family. When I remarked about how hard that must have been, she said a little children’s book had helped a lot with her young grandchildren. ‘Waterbugs and Dragonflies’ is a beautiful little picture book that relies on the story of a waterbug changing into a dragonfly. The gift edition is graced with lovely watercolour illustrations by Gloria Ortiz Hernandez. There is also a colouring book version by another illustrator which I have not seen, but noticed while browsing on Amazon.

Here is a link to the story, so that you can preview it.
Waterbugs & Dragonflies Text Only

There is an afterword in which the author says, “No one can predict the reaction of children to a story. The world of imagination is more real to them than the visible one. They surprise us with their clear grasp of that which we would make complex. And with unerring honesty they see through our flimsy pretenses. ‘I don’t know’ is an honest admission. But ‘I believe’ gives our children confidence in a future to be anticipated and in a Creator whose plan can be trusted.

‘The Etiquette of Illness: What to say when you can’t find the words’ by Susan Halpern

The Etiquette of IllnessstarstarstarstarstarFinding the right words to say when we learn that someone has been diagnosed with a serious illness or is grieving the loss of a loved one, can feel so tricky and awkward. But even though we are afraid to say the wrong thing, it is more hurtful to do nothing at all. Susan Halpern has written a very helpful and compassionate little guide which can equip you for hard times. Drawing on years of experience, she strikes a good balance between practical suggestions and not being too precise or formulaic, since all people and relationships are unique and ‘one size’ does not fit all. She also brings the duel perspective of both the caregiver and the person being taken care of. The person who is living with illness, while grateful for the assistance and attention, may still need to establish boundaries around the help that is being offered.

Halpern has included lots of stories and examples of ways to handle visits, suggested wording for written cards, and even just tweaking common questions so that they better meet the needs of emotionally challenged people. Instead of “How are you?” it might be better to say “Do you mind if I ask you how you are doing?” Of course it’s not all about words and sometimes just crying with someone, holding their hand, or dropping off a meal is plenty. It is not a “how-to” book but helps you to think about what is most helpful or appropriate in your own caregiving,  and how to let loved ones know what you need if your are sick.  The context of your relationship and the situation will guide you as much as this book will, but Halpern’s wise and comforting handling of a difficult subject can empower those who feel inadequate in reaching out to others. There is even a chapter on how to communicate better with health care workers and how to talk to children about death and illness.

This is a book that I wish I’d had years ago.  When I think back to earlier experiences that I know I handled poorly, I regret some of the things I did and mostly many of the things I didn’t do or say because I was unsure and inexperienced. This would have been an outstanding reference. I learned about this book because it was mentioned in Will Schwalbe’s book The End of Your Life Book Club, also a great read.

‘The Undertaking: Life Studies from the Dismal Trade,’ by Thomas Lynch

“Grief is the tax we pay on our attachments.”   Thomas Lynch

Those who take care of our bodies, either in sickness or in death, see us at our most vulnerable. We are intrigued about how people can do these noble jobs: nursing home carers, intensive care nurses, surgeons, pastors, and funeral directors. Dealing every day with death and near death seems most difficult at best, morbid at worst. However, oddly enough, when we finally come to grips with our mortality, we begin to embrace life in all of its wonder and brevity. And when we hear how those in the caring professions manage, it takes away some of the mystery and brings new perspective.

Thomas Lynch, in ‘The Undertaking’, provides us with an insiders look into the daily life of  a funeral director, ‘undertaking’ a task which was a promise he made to his father: writing about their family business in the dismal trade. Lynch is a poet and an eloquent writer giving us a unique glimpse into how he and his family have been dedicated to burying members of a their small Michigan town for many years. Funeral directors perform necessary tasks and whether we love them or hate them, their mysterious business is intriguing and well articulated in this book. In Lynch’s words, what he does is “serving the living by caring for the dead.”