Thursday, October 29, 2015

The Importance of Dying Well

About three weeks ago I received a book for review on the subject of dying. The book, "Peaceful Passages: A Hospice Nurse's Stories of Dying Well" written by Janet Wehr, was a fascinating one. Not necessarily a religious book or even a Christian book, but an inspired and moving account of the journey from life into death. I could not put the book down, finishing it in a few scant days.

But whenever I sat down to write a review I blanked, experiencing writers block, complete unable to come up with a fitting review for a book I believe everyone needs to read, if for no other reason than to preparing yourself for losing your loved ones and how to handle the end. I kept staring at the blank word document on my computer screen, willing the words to come but finding I had nothing to say.

At least I had nothing to say until a story broke in the news this week, the story of a dying child and her parent's decision to allow her to determine when enough was enough. Five year old Julianna Snow has suffered from one of the most severe forms of Charcot-Marie-Tooth disease from birth. Her story will not have a happy ending. Her life has been an endless round of medical tests and treatments that would be tough even on a grown up. Her future is one that could end with the next cold or virus.

What brings her story into the eyes of the media and the attention of others is that Julianna's family is Christian and they've recently asked her if she wants to stop fighting her illness and go to heaven or continue with the painful, invasive and ultimately useless medical treatments in the hospital. The child has chosen to die at home, and no longer go to the hospital. She is choosing, a five year old child, how her end will come. Even a child wants to die well.

The problem is that most of the world doesn't think that a child, the one actually suffering, should have any say over their treatment or final plans. Many argue that a child cannot possibly be mature enough to know what she's giving up by deciding to stop heroic medical measures. They say that the parents are abdicating their responsibility to provide ongoing medical care for Julianna's CMT disease. Julianna's mother is a doctor, someone that too clearly understands what more her child faces from this illness. She and her husband decided that their child, being the one who is suffering, should also be the one who calls the game, when it's too much and her quality of life is abysmal.

Before reading "Peaceful Passages" I would have likely joined in on that internet crowd blaming and shaming the parents for allowing a child to decide her own fate. Not now, now I have to consider that each of us is ultimately the captains of our own futures. Why should the family not honor the wishes of a dying child to have some say over her own death. Even if you remove the religious element, heaven and hell, and look at the situation logically it seems as though even a child should be the decider over her own ending. She has known nothing but a life filled with pain, knowing her illness with bring less and less of a life to her.

Which is what a large part of this book is about, people choosing to die on their own terms. So many of the touching stories in "Peaceful Passages" are about just that, deciding what that end will be.  Janet Wehr's experiences in the book tell me that we all need to have those conversations with loved ones, young and old, healthy or facing a lifelong illness. We need to make sure that those that love us know what we need in order to die well, to have our wishes known and honored.  To be surrounded by those that support and love us as we transition into the great unknown.

I cried more than once when reading through the stories of dying collected in this book.

I wish there was some way to get a copy of this book to Julianna Snow's family because I believe that it would be a great comfort to them in this time and when Julianna leaves this planet. There is nothing more difficult that watching your child suffer like this, as I discovered when my youngest child was four years old and she was in and out of the hospital for ITP (idiopathic thrombocytic purpura) for quite some time. I remember the fear, the bargaining with God to strike me but leave my child alone and the months of slogging back and forth to the hospital for treatment.

One of the big benefits of this book is that it completely demystified the role of Hospice in the end of life. Hospice is shown as it is, a help to both the patient the family as the end nears. When the family understands how Hospice helps make the patient make the most of their remaining time it takes away some of the worries and struggles involved. This is a great read for anyone preparing to help a loved one dealing with a life threatening illness. Janet Wher has done a great service by sharing her years working in Hospice with anyone interested in how to die well.

1 comment:

Brian said...

It is clear that your reading has deepened your human understanding. That is probably the very best outcome of something shared in words. Thank-you for writing on this matter. Rather than speak directly to the subject you address, I want to comment on the aspect regarding the child.
In Christianity and other world religions, childhood is not clearly honored and respected. It is sometimes idealized but most often, with regard to children, there is instruction in control, training . The garbage about not sparing the rod is a fine example, the need to chastise, as if that improves anybody's life. Generally, there is such disrespect for little ones that it is shocking. They are hauled around like baggage, swatted, harshly addressed and not basically respected by adults. The parents assaulting a child in the supermarket would never ever commit such an act on an adult but it is fine for kids to be manhandled, berated, spanked and so forth. So it is, when two open-hearted, compassionate parents want to listen to their sick child's wishes and take them seriously, they are roundly attacked and condemned.