The Left Atrium

CMAJ 2001;164(6):840-3

Final crossing Crossing over: narratives of palliative care David Barnard, Anna Towers, Patricia Boston and Yanna Lambrinidou New York: Oxford University Press; 2000 457 pp $63.95 (paper) ISBN 0-19-51234-3-3

Upon ceasing to try to rescue the perishing, one is then free to care for the dying. Acts of caring for the dying are deeds done bodily for them which serve solely to manifest that they are not lost from human attention, that they are not alone, that mankind generally and their loved ones take note of their dying and mean to company with them in accepting this unique instance of the acceptable death of all flesh.¹

Through the detailed and sensitive presentation of 20 narratives about seriously ill and dying people, the authors of Crossing Over illustrate the complexity and variability of caring for people who are dying. Derived from a three-year prospective ethnographic study of the experiences of real patients, families and their caregivers, these narratives go beyond case reports in their attention to the processes by which patients, families and health care providers find personal meaning in illness, and how personal meaning influences the experience and outcome of care.

The book is divided into three sections: an introduction, the narratives and a discussion section on "working with the narratives." The introduction presents key issues in caring for dying people, the development of palliative and hospice care in the Western world, the process by which the narratives were gathered and written, and the place of this book among other current palliative care texts. The narratives themselves comprise the largest part of the text. The discussion section explains the authors' research methods and offers comments and questions to guide analysis of the narratives. An additional and particularly helpful feature is an index of themes and where they occur in the narratives. The extensive bibliography is most useful.

Based on real-life situations, Crossing Over does an excellent job of presenting the reality of caring for the dying from all perspectives. The cases are as complex as the people involved, and things do not always go well. The challenges in complex symptom control, resource constraints, interpersonal interactions and the unique adaptation of each patient and family to illness are found in the narratives. It is refreshing and affirming to find such richness of detail and such an honest and complete presentation of the day-to-day reality of palliative care, a reality that is full of difficulty but also, in the words of the authors, "full of the therapeutic power of human presence, honesty, compassion, humility, humor, and the affirmation of life."

Each narrative is presented with a patient's name and a theme, such as "Jasmine Claude: A study in faith," "Joey Court: The death of a child," "Susan Mulroney: A private matter," "Klara Bergman: Burdens from the past," "Leonard Patterson: Jagged edges" and "Costas Metrakis: It was not a peaceful death."

Leonard Patterson was a 62-year-old European American with colon cancer. His narrative is a description of poverty, tumultuous family relationships, the complexities of relationships between health service agencies, social services constraints and difficulties in achieving pain control. It is also a portrait of a man who, accustomed to helping others, has great concern for his troubled family's future without him and of a family that is able to rise above some of the very great difficulties they face and to grow in the process. His story is an example of a humane and heroic effort by a hospice team to journey with the patient, assist the family at home and in hospice, and to provide respectful and sensitive care that encompasses the physical, spiritual, social and emotional spheres. I was deeply touched by it.

Klara Bergman was an 80-year-old Holocaust survivor, having lost her husband, mother and 14-month-old son (who died of pneumonia) in the camps. Her courage and dignity are evident in her rebuilding of her life and in the way she faces her death. She is deeply troubled in her dying about her decision to have taken her infant son with her to the concentration camp rather than leaving him with friends. The narrative is a sensitive portrayal of how these wrenching decisions affected her life and that of her daughter, who was born later, and the way in which the care team provides support to both.

All of the narratives are engrossing. They are also instructive, illustrating how the issues that arise in palliative care can be addressed through a team process. We are fortunate, with the publication of this text, to have an even wider variety of excellent textbooks from which to learn and teach. The unique strength of this book is the deeply human perspective it offers on what is the essence of "person-centred care." It is the voices of ill people, their families and those who care for and about them that are heard. Reading the narratives provokes self-reflection, something that is invaluable to the physician and other care providers who wish to journey with dying people.

Who should read this book? Those who teach palliative care will want to use this book in their work. Practitioners will find that it affirms the work they do. Indeed, all health professionals may find enrichment and inspiration in this text.

The title, Crossing Over, is meant to illustrate the many physical, emotional and spiritual leaps that the authors witnessed during their study. Patients, families and care providers "crossed over" to other viewpoints and to new journeys and roles. This book allows us to cross over into the world of the patient and family in a moving and educational way.

Elizabeth J. Latimer
Professor, Department of Family
  Medicine, McMaster University
Consultant Physician in Palliative Care
  and Pain Management
Hamilton Health Science Centre
Hamilton, Ont.

Reference

1.	Ramsey P. The patient as person. New Haven (CT): Yale University Press; 1970. p. 153.

At wit's end Wit Vancouver Playhouse Theatre January 8 to February 3, 2001 Written by Margaret Edson; directed by Glynis Leyshon Starring Seana McKenna, Alex Poch-Goldin and Joy Coghill

Margaret Edson, who wrote this play as a response to work experience on a cancer ward, donated her Pulitzer Prize money to set up a foundation to teach medical students better bedside manner. Interestingly after the success of Wit, she is not planning to write another play and has returned to teaching kindergarten.

Heather Kent
Vancouver, BC

There is a gorge, hidden in the forest, far from the complexities and heat of summer. The air is pungent with boreal spices, and I can hear the whirr of cascading water in the distance. Through root-tangled corridors of stone I follow a path that leads to an escarpment. I've stood at this point before; from here, you can see the gorge and the series of waterfalls and pools that step down through the Ordovician rock. The water plunges and shimmers through basalt so perfect it might have been fabricated for a Disney theme park. In fact, this rock is volcanic: 400 million years old and incredibly tough.

From where I'm standing I can see the second pool. It looks about the size of a hot tub. The last time I was here, many years ago, two barefooted boys in cut-off jeans emerged from the woods and began to scramble nimbly up the side of the gorge. The first arrived at a notch 30 feet above the second pool. He stood poised on the edge, his hands stretched out in front of him, balancing, waiting for the moment of perfect readiness. Then, thrusting his arms downward, he launched himself into a graceful swan dive, straightened out, and cut the surface of the pool like a knife. Up he surged, in the cauldron of bubbles he had created. Laughing, he shook his head in the waterfall and splashed to the rocky ledge. Then his friend gained the notch; he pivoted, and with his back to the water, raised himself up on his tiptoes ...

Today the notch is empty. I can see, at the bottom of the gorge, the resolution of all the turbulence: the final, placid pool. On the far side is a 60-foot rock face; there, at the base, two young climbers are preparing their gear: harness, clips and rope. They have already secured a double line to the top of the cliff. One of them hooks the rope to his harness while the other, the belayer, pulls the line taut. The climber reaches behind to his chalk pouch, dusts his fingers and looks for a toehold, a finger purchase. The rock wall protrudes at this point, and he can't get around it. He explores to the left and finds the tiny indentation he needs. Gripping with his right fingertips, he finds a secure tip. Blindly, he explores with his left hand. His muscles contract in the shaded light. Kneeing, shouldering, fighting the rock, he tacks his way laboriously up the face. At 45 feet his right hand straightens suddenly. A tiny ledge has crumbled, and he falls back into thin air. The belayer pulls on the rope as the climber sways securely, gently bumping against the cliff as he reaches back for more chalk. He resumes his climb. Five minutes later he is scrambling over the top of the cliff. He straightens up, turns around; triumphantly, he pumps his right arm.

I was not much older than this exultant climber during my final year in medical school. That year I lived in a rehabilitation hospital and was responsible for admissions, discharges and night call. I soon found out about spinal cord injuries, the levels of paraplegia, high and low quadriplegia and the level of freedom that each level of paralysis takes away. I learned about bladder dysfunction, bowel care and the incapacitating war between flexor and extensor muscles. I witnessed psychological turmoil: the sad transition from the former to the present self. I became part of the struggle to redefine hope, the incredible effort to adapt and cope.

The drunken party, the late-night drive, the dive into dark water took on new connotations for me.

Later, working in an emergency room, I saw the pain of last words, the bloated, ashen face in traction, the pool of tears, the grief-stricken parents. "Mom, Dad, I love you ... I'm sorry."

I find it difficult at such times to consider the mathematics of risk-taking. Knowledge, preparation and fitness seem meaningless. The freedom to attempt the impossible is such a vital concept before a challenge, but it is cold comfort when you are grieving. In these situations we are left to mull over judgement issues: peer pressure, drugs and inexperience.

Long before I discovered the gorge, long before experience taught me fear, I had read Earle Birney's poem, David.¹ His story of two young men cutting survey lines in the Rockies has always stayed with me. On the weekends David taught Bob how to climb. Their goal that summer was to reach

... remote,
And unmapped, a sunlit spire
   on Sawback, an overhang
Crooked like a talon. ...

By September they were well practised and hardened, and over a weekend they reached the summit. Bob recalls:

... Unroping we formed
A cairn on the rotting tip.
   Then I turned to look north
At the glistening wedge of giant
   Assiniboine, heedless
Of handhold. And one foot gave. ...

David reaches out, grinning, to steady him. And then,

... Without
A gasp he was gone. ...

Somehow Bob makes it down to the ledge where David has landed, still alive. He cannot move. He does not feel pain. He understands what this means. He whispers,

Bob, I want to go over!

Birney's poem was written in 1940, before aerial rescues and the advances of rehabilitation medicine. Bob, anguished, struggles with his friend's request.

This story haunted me the day I saw the young divers on my first visit to the gorge. I pondered the meaning of freedom, my own fear of risk-taking, and Bob's dilemma. That day, the gorge was suffused with the golden light of late afternoon. I looked toward the notch. There, with his back to the water, the second diver stood on tiptoes, his hands stretched out in front of him, balancing. The sun glinted above the tallest hemlock, a bird sang, and then with a thrust of his arms the diver launched himself into the incredible thinness of air.

Ian A. Cameron
Department of Family Medicine
Dalhousie University, Halifax

Reference

1.	Birney E. David. Ghost in the wheels: selected poems. Toronto: McClelland and Stewart; 1997. p. 21-7.

Copyright 2001 Canadian Medical Association or its licensors