Sunday, March 3, 2013

"Stories to Inspire a Peaceful Passing"

Writing about medical care at the end of life requires devotion to a quite literally vital subject in order to transcend the inconvenient fact that, while all humans die, few Americans want to think about it, much less read about it. 

So all credit to the pulmonary and critical care physician Lauren Van Scoy for having the imagination and fortitude to take on this task, one I’m tempted to describe as thankless, but that would miss the point of the pervasive gratitude in “Last Wish: Stories to Inspire a Peaceful Passing” (Transmedia Books). Medicine’s glory is perhaps in the cure, but is there a higher calling than the compassionate care of the dying?

“Last Wish” concerns the last decision you will ever make, and it’s one you only get to make it with foresight and luck. Otherwise, someone will make the decision for you; maybe someone you know and love, maybe not. It’s pretty much up to you.

So think of “Last Wish” as a hand to hold while you journey through difficult personal, emotional terrain. “Last Wish” is made of stories of those who’ve been through this before.

Some are stories of Van Scoy’s patients. Some are about patients of colleagues, constructed through interviews by Van Scoy. There are six stories in all, each uniquely compelling and beautifully written, and unpredictable. Negotiating that unpredictability, perhaps, reveals the real art of medicine, as told by a wise and caring practitioner. In these sometimes unsettling stories, you might be inspired to take responsibility for writing your own ending.

“Outside, Dr. Olson wondered how long it would take,” Van Scoy writes of Victoria, 79, her lungs riddled with untreatable tumors and unable to breathe sustainably on her own but with an extraordinary daughter able to differentiate between her own fears and uncertainty and what is best for her mom. “(Dr. Olson) had performed many terminal extubations and was amazed at how different each one could be. Some patients linger for hours after the ventilator is withdrawn. They’re able to breath on their own for a few hours, but eventually, the strength that allowed them to maintain their oxygen levels fades, and they succumb to a respiratory fatigue. Others go right away, as they simply cannot survive for any length of time without the ventilator. Dr. Olson wondered what Victoria’s body would do and then wondered which way would be best. Is it easier for the family if the patient dies right away so they don’t have to stand by and watch a long and drawn out decline? Yet, when it happens right after the ventilator is withdrawn, it might worsen feelings of guilt because the family sees a direct relation to their decision to take out the tube and the death of their loved one. Dr. Olson sometimes thought it was better if the two events were spaced out in time, but you could never be sure how any family will react to the passing of a loved one. It always seemed to be a little easier when the family had some time with their loved one after they were unveiled from the shroud of the ventilator. Dr. Olson hoped Victoria could breathe on her own long enough for all forty of her family members to say their goodbyes in their own time.”

Van Scoy has crafted questions to follow each story and engage the reader in thinking about values and wishes, and what she calls an “end-of-life planning compass.” A compass is a smart way to present such information, as direction is so easily lost when acknowledging one’s mortality. 

“Last Wish” is a valuable addition to end-of-life medical literature, and yet how you will receive it, or whether you’ll even bother to read it, might be predicted by your reaction to one scene in the book. Call it the sense-of-perfection test.

Like an aspiring singer standing exposed before a celebrity jury on a star-making TV series, Barbara is being interviewed, and judged, by two men deciding whether to pay for her wedding, when one man turns to the other and says, Does it get any more perfect than this?

Barbara is overcome by emotion with the realization that her dream of a wedding day is coming true. But here’s the test: How does it affect your sense of “perfect” to know that this lucky bride-to-be is being interviewed in her hospice bed.

If you think of hospice as a place where hope goes to die, an unfortunate but not uncommon misperception, then you might imagine any number of more perfect brides-to-be. And yet the joy in this patient’s story is uniquely connected to her own acceptance of her time running out. 

Barbara is terminally ill, will take an ambulance to her wedding, and there is no vow of lifetime commitment recited with limitless expectation. And yet she has love, dedicated care, and an heightened awareness of the moment. Hospice has added days to Barbara’s life, and life to her days. What more is there to understand? 

You won’t forget this bride. Or the motorcyclist. Or Patrick, his mom, and their highly individual approach to accepting what is taking place. Or the family who can’t let go, the one who can, or the God whose time clock they yearn to respect.

“Religion in medicine has always been a mystery to me,” Van Scoy writes. “The majority of my patients are deeply religious, but the way they interpret their religion can vary significantly. I puzzled over Sam’s response. To Sam, ‘letting God’s will prevail’ meant using science and medicine to its fullest and if she were to survive, it would be God’s work. On the other hand, some patients feel that using science and medicine is working against God, and that if a patient is fated to survive, it has nothing to do with what we as doctors can do. Those patients chose to remove the machines and ‘let God’s will prevail.’ I wondered about Sam’s interpretation as the conversation continued.”

In “Last Wishes,” Van Scoy captures a medical team's close attention to patient/family wishes, even when they disagree with it. With keen eye and ear, she describes both the strange and complicating aspect of the patient-physician conversation in which information is heard selectively and the way patients become a victim of poor nurse-physician communication.

In these six stories, trust emerges as important as hope, and sometimes as fragile.

Why this matters is captured well by Engage With Grace founder Alexandra Drane in the foreword to “Last Wish.” Drane writes: “Since we launched Engage With Grace, we’ve found that once the conversation starts and our thoughts and wishes are shared with those we love, then the system that intervenes to bowl over our intent stops being intimidating and we become empowered.”

“Last Wish: Stories to Inspire a Peaceful Passing” is available through Twitter: @knowyourwishes. Van Scoy is Chief Pulmonary and Critical Care Fellow at Drexel University College of Medicine and online editor with the national Coalition to Transform Advance Care (C-TAC). 


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