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Privileged Presence: Personal Stories of Connections in Health Care available in Paperback
2015 Book of the Year Award, American Journal of Nursing
Privileged Presence is a collection of more than 50 stories that capture both the medical and emotional aspects of the health care experience through tales from those who have been there, and offers powerful messages about the essential ingredients of “good” health care: respect, compassion, collaboration, open and honest communication, family involvement, and flexibility and responsiveness to individuals and their needs. This updated second edition uses real-world experiences recounted by patients and their families, nurses, doctors, and other health care professionals to illustrate what works and what doesn’t and what increases or diminishes people’s sense of confidence and well-being.
|Publisher:||Bull Publishing Company|
|Edition description:||Older Edition|
|Product dimensions:||6.00(w) x 9.00(h) x 0.65(d)|
Read an Excerpt
Personal Stories of Connections in Health Care
By Liz Crocker, Bev Johnson
Bull Publishing CompanyCopyright © 2014 Bull Publishing Company
All rights reserved.
As Unique as Snowflakes: Responding to Individuals
"I was surprised that people with the same disease had such very different stories."
— Rachel Naomi Remen
"People in their most vulnerable states still just want to be people."
— Suzy Crocker
"People will forget what you said, people will forget what you did, but people will never forget how you made them feel."
— Maya Angelou
* * *
Illness and injury can create feelings of enormous vulnerability. In these circumstances, patients and family members long for someone to help them make sense of their upside-down world and relate to them, one on one, person to person, seeing them for all they are ... not just an illness or injury.
Health care professionals may have seen thousands of broken arms, respiratory infections, gastrointestinal problems, strokes ... but for each person who walks into a doctor's office, a health care clinic, or a hospital, what they are experiencing is unique to them. Their pain is personal, their fears are their very own, their ordered lives are now disoriented.
No two people, situations, stories are the same. Each individual wants to be seen, heard, acknowledged, understood, and recognized as a whole person, with a name and with a life. Such recognition creates the foundation for respect and dignity which, in turn, are the pillars for a caring connection.
I Am Not a Patella
Respect for Dignity
Friends in Low Places
Who Will Walk the Dog?
Unriddling the Riddle
The Walk of Honor
Security Equals Safety with Sensitivity
I Am Not a Patella
It was a Tuesday evening and a regular modern-dance class. I was sixteen. I did a big fouetté (pivot) with big momentum across the room, but my foot stuck on the special floor covering used for dancers while my body kept going. I heard a pop. My leg was at a funny angle, and one of the teachers straightened it, but my kneecap was still in the wrong place. The pain was excruciating.
The ambulance guys were nice, but I felt every pothole on the way to the hospital. I waited in emergency for a long time with ice on my leg but with nothing else to numb the pain. About six hours later, the verdict was in. My kneecap (called a patella) was on the side of my leg. Surgery would be needed to put it back in place, but there was too much swelling to operate right away. Surgery was scheduled for Thursday morning. In the meantime, my leg was wrapped in a padded splint. The hospital staff thought I'd be more comfortable waiting at home.
My mum and I wondered how I'd even get into the car, let alone into the house and up the stairs at home. But home we went at 3 a.m., via an all-night drugstore for crutches. It was freezing cold and snowing outside. When we pulled up to my house, we first talked our way through how this would work. I couldn't lower my leg without experiencing shards of pain in my leg, and so while I would try to use the new crutches, my mum would hold my injured leg up at a right angle to my body With ice on the pathway, it was going to be tricky. A poor, unsuspecting newspaper delivery man ended up helping us navigate from the car to the front door.
When Thursday came, I was excited about the surgery because I wanted to have my knee put back the way it should be. Of course, I don't remember too much after surgery because I was groggy, but I do know it was exciting to get a TV and embarrassing to use the bedpan. And I knew my mum was staying in my room overnight. Apparently, the nurses told her that was okay, but there were no cots, so she created a sleeping surface by lining up two footstools and a chair and brought a sleeping bag and pillow from home. (Ironically, on the last morning, after three nights, a new nurse came in when my mum was taking her "bed" apart and said, "Goodness! You could have had a cot, you know!" Go figure!)
The next morning, a doctor I'd never met before came into my room with a bunch of other people and said to his group, "So, this is the patella." I tried to respond with, "Yeah, I'm Suzy," but he didn't respond to me. Did he think I wasn't there? He never told me who he was and never spoke to me by name. He just spewed out medical jargon to the doctors with him. I felt like a science experiment.
Didn't he know I was desperate for more information about what had happened and what would happen to my body? He was supposed to be looking after me, but I did not feel comfortable with him. How can you feel comfortable with someone who doesn't look you in the eye, shake your hand, call you by name, and tell you who they are?
Next, a physical therapist came in. All orders and no sympathy. She told me to get out of bed. This was the first time in four days that I had lowered my leg below 90 degrees. I've always believed that if something is super painful, then it probably isn't good for you. My leg hurt a lot and I was scared. She offered no alternatives as to what I could do. She just left.
Fortunately, I got a different therapist the next day who was nice. She asked how my leg felt and if I was nervous. She was so encouraging and told me to just take my time. She actually showed me what she wanted me to do and how to safely approach the movements. I felt comfortable with her. She seemed to understand that, at the end of the day, it's about two people in a room trying to solve the same problem together.
The nurses were pretty cool. They showed me some little tricks to make it easier to move my leg, and one of them, even though I was going to be discharged later in the day, washed my hair. I can't tell you how good that felt! People in their most vulnerable states still just want to be people.
* * *
Suzy recovered fully and went on to dance again.
My Aunt Mary was a life-long spinster who always lived independently. Even growing up, I knew she was a force to be reckoned with. Aunt Mary was right even when she was wrong. I loved her, I respected her, and I was a little bit afraid of her. And so when she called me to say, "I want to go to the hospital tomorrow," I paid attention. I don't know why I bothered suggesting a closer hospital because Aunt Mary was set on the hospital she wanted. She was also specific about "tomorrow" because she was working that day, looking after a ninety-year-old woman.
When I picked her up, I could see that Aunt Mary was jaundiced. After evaluation in the emergency department, it was clear she wouldn't be going home. This would be Aunt Mary's first time in the hospital. Because she had no frame of reference for that world, she had some unusual conversations.
For example, one day she told me, "This place is so stupid. Some doctor was saying I should have a face-lift. I told him I didn't want one and to leave." I was eventually able to figure out that "some doctor" had been a hematologist who had been suggesting that Aunt Mary have some "platelets." Somehow, all she heard was "face-lift."
On another occasion, a doctor was trying to find out what Aunt Mary would like in terms of "do not resuscitate" orders. The doctor must not have been clear enough for her to conclude that he was talking about her. She reported, "This doctor was telling me all these awful stories about what they have to do to people sometimes. It all seemed gloomy, and so I asked him if he had a happy family. He said 'yes,' so I told him he should go home and spend some time with them."
And then one day, a social worker called me to tell me, "Your aunt is very frustrating. She won't have any care." They hit a roadblock, and instead of trying to negotiate the barrier with her, they called me instead. I told them that if they were talking to me, they obviously hadn't talked to Aunt Mary. I couldn't and wouldn't speak for Aunt Mary. Rather, I suggested that, if they asked her some questions, they might discover Aunt Mary rarely had an unclear thought, felt she'd had an exceptional eighty-seven years of life, and wasn't interested in any of the hospital's invasive procedures.
Aunt Mary never wanted to be in the hospital, but we promised her she would never be alone. She was always surrounded by Irish music and family and friends. Even when Aunt Mary slipped into a coma, there were still people with her.
Initially, the nurses had been resistant about our being there all the time, citing some rule. As soon as I pushed a bit, though, the nurses caved in and brought chairs for us. The staff talked about how atypical it was to have people there all the time, but they could see how comfortable Aunt Mary was. I felt so badly for all the other patients who spent their nights alone with the dark.
Respect for Dignity
My mother-in-law, Edith, is eighty-nine and suffers from a lot of pain from arthritis. Fortunately, Edith found a family practitioner who truly honors her wishes and requests.
When Edith goes for her regular physical, she doesn't go in and immediately get undressed. The visit starts with a chat. Her doctor says, "I need to talk to you first to figure out what we might want to do today." He always talks at eye level with her.
When the issue of an annual mammogram came up recently, the doctor reminded Edith of this diagnostic procedure. She said, "I've lived too long as it is. I certainly don't want any more mammograms." He replied, "I understand. It is my duty to tell you about it, but I respect your choice not to do it."
* * *
Edith experienced the same respect for her dignity when she went to our small community hospital for surgery on her wrist for carpal tunnel syndrome. When she arrived, the nurses noticed that Edith was quite crippled by arthritis. They said she could stay seated in her wheelchair and asked her only to take off her blouse and put on a hospital gown, which rested on the rest of her street clothes. (She didn't even have to take off her bra.)
The nurses took her right into the operating room in her wheelchair and brought her back out again in the same chair after surgery She never had to get out of her street clothes! Noticing the puzzled look on my face, the nurses said, "Oh, we've checked the literature. There's nothing to worry about with street clothes for this small surgical procedure."
Friends in Low Places
My first encounter with Peter was prompted by a phone call on Thanksgiving Day 1994. My sister, brother-in-law, and I were just about to go for an early morning walk when a patient called me on my cell phone to tell me that there was "a guy in bad shape in the old dry-cleaning building" and asked if I would please go and help him.
At this point in time, I had been working as a nurse practitioner at the clinic of a local shelter on Cape Cod for about a year. I was the first full-time provider and the first to work during the day. Staffing up to that time had consisted of volunteer physicians and nurses two evenings per week. Daytime hours were for outreach and continuity of care. I spent my first year going out on the streets and seeking out places where the homeless congregated. This became the cornerstone of my practice, and that Thanksgiving Day phone call was testimony to the fact that my approach was working.
I proposed to my sister and brother-in-law that we walk to the dry-cleaning building. They conceded but wondered why we needed to do this on a holiday. "Thanksgiving Day?" I replied, "What better day to help out someone less fortunate!"
Thirty minutes later we were looking into the open door of the old dry-cleaning building. Mattresses, bedding, several sleeping bags, blankets, and empty liquor bottles were strewn about. The place was dark and smelled of urine and stale beer. I stepped in and began looking around. My relatives watched anxiously at the doorway.
At first it seemed that the building was empty, but then I heard someone moaning. I moved closer to the sound, and there, under a pile of blankets, was a man who looked to be in his seventies with long white hair and a full beard. "Hello," I said. He replied, "Who are you?" I told him my name and where I worked. He was not pleased and cursed as he attempted to stand. He was highly intoxicated and had obviously not bathed, changed his clothes, or shaved in a very long time.
It turned out that Peter was fifty-nine years old and had been living on the streets for several years. This initial encounter was the beginning of several years of engagement, trust building, and eventual medical management of several medical issues related to Peter's acute and chronic alcohol and substance abuse. These complications included bilateral hearing loss; depression; post-traumatic stress disorder (PTSD); personality disorder; chronic alcoholic hepatitis; peripheral neuropathy; exposure resulting in frostbite, gangrene, and amputation of his right big toe, as well as other toe debridement; multiple bouts of pneumonia; pancreatitis; skin cancer; peptic ulcer disease; multiple trauma related to falls and assaults, with resultant degenerative lumbar-sacral disc disease and lumbar osteoarthritic changes; and foot drop.
Peter's gait was unsteady, and he soon fell back to the ground. He went to the hospital that day against his will. From that encounter on, however, we began a relationship as patient and provider that eventually turned into friendship. Our relationship was often difficult because Peter had many issues regarding trust due to a very abusive childhood. But persistence and consistency in my work with him helped him to learn to trust me.
In reality, we had a lot in common. We both grew up in Boston, we both were Irish Catholic, and we both had had an alcoholic parent. The difference between us was "There but for the grace of God...."
Giving Peter unconditional love allowed him to grow as a person. Peter had a great smile, a quick wit, and a kind heart when given the chance to express his humanity. Sober, he was able to demonstrate compassion toward others and would often bring in snacks and little gifts to the clinic staff.
Peter struggled with his addiction and at one point achieved eighteen months of sobriety while living in a halfway house. The real success came in January 2000, however. After being arrested while intoxicated, Peter decided to go into treatment one more time, and he never drank again.
In 2001, Peter decided to move to Pennsylvania. A friend who was a minister had agreed to help him find housing. Peter would call me every few months or so. In September 2005, he called to tell me he had a new apartment. He was happy, still sober, and connected with a church. He inquired about my family and gave me his new phone number, promising to stay in touch.
In early November 2005, I received a call from the shelter stating that a Peter K. had been found dead in his apartment in Pennsylvania. The coroner's office wanted to know if we knew of any next of kin. Review of his medical records from the local hospital revealed that Peter had listed me as his next of kin. I am in the process of having him cremated, and his ashes will be shipped to me. Once I am in possession of his remains, I plan to have a service for him.
Many of his homeless brothers and sisters will join me, as we have so often done in the past, to pray for Peter, and we will scatter his ashes in the sea. Although I feel sad for the life that might have been, I am confident that Peter did find hope and joy in the end.
* * *
The nurse practitioner in this story has worked for twelve years to bring healing to the homeless, the underserved, and those who have been left behind. Her outreach efforts have taken her on to the streets, inside derelict buildings, and into the woods. She says, "I have friends in very low places."
Over a number of years, her efforts expanded from an intermittent, weekly, one-woman nursing service to a full-time multiservice medical health clinic with twenty employees. This energetic and tireless woman explains that she eventually became burned out from dealing with bureaucracy and administrative tasks and so stepped down as clinical director.
"I need to be able to talk to people. Everyone has a story, and I love to listen and help people figure things out. I never suffer from 'compassion fatigue' as long as I can work directly with those in need.]"
She believes that simple acts of healing can occur with each concerned question, caring visit, and reassuring touch. She bemoans the fact that many nurses never get to give baths or backrubs anymore. "That's when you hear what's really on people's minds and in their hearts."
Who Will Walk the Dog?
Odd things sometimes came across my desk when I was working as the hospital's legal counsel in risk management. One of my favorites was the request about a dog.
The charge nurse from the general medicine unit came to see me to find out if there was any legal reason why a patient couldn't have her dog stay in the hospital with her. My "lawyer" response was, "Probably not, so long as we get the proper release forms signed," but because I had been a nurse before becoming a lawyer, I was curious about the clinical circumstances.
Excerpted from Privileged Presence by Liz Crocker, Bev Johnson. Copyright © 2014 Bull Publishing Company. Excerpted by permission of Bull Publishing Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
What Is Privileged Presence? 3
Why This Book? 4
What Matters in Health Care? 6
Why Stories? 7
Why These Stories? 9
Who Is This Book for? 10
As Unique as Snowflakes: Responding to Individuals 13
I Am Not a Patella 15
Aunt Mary 18
Respect for Dignity 20
Friends in Low Places 21
Who Will Walk the Dog? 25
Unriddling the Riddle 26
The Walk of Honor 29
Security Equals Safety with Sensitivity 32
When Life Is Threatened: The Importance of Support 39
Flying Blind in a Frightening World 46
Living the Opposites 54
The Journey of the Green Elephant 60
I Needed a Guide 72
Rise & Shine 75
A Profoundly Isolating Experience 78
His Name Means "Rise above the Storm" 88
Natural Allies: Partnerships in Care 97
We Are Not Visitors in Her Life 99
Something's Wrong-Please Listen to Me! 101
That's What We're Here For 110
When the Brain Is Broken 112
It Takes a Team 120
Investing in Information 128
It Just Comes Naturally 129
Awash in Disappointment 134
Choosing a Doctor 142
Mama Carmela 144
More than Words: Feeling Heard and Being Valued 151
A Triple Win 153
Surgical Suspense on Sundays 155
The Healing Effect of Listening 158
Tattoo It on Our Hearts 160
An Enormous Burden Is Lifted 164
Where's the Headache? 168
I'm the Full-Time Tenant of This Body 169
The Value of Asking Questions 174
I Didn't Feel Heard 178
Being Together: The Power of Family 183
I Want My Children with Me 185
Smiles Tell the Story 191
Olivia's Story 192
It Was as Hard as It Gets: The Impact of a Global Crisis on Family-Centered Care 195
If Anyone Asks, You're Twelve-Year-Old Twins! 203
It's Not about Time: Small Moments and Lasting Memories 207
Everyday Gifts 209
When Loss Is Suppressed or Acknowledged 211
Simple Sentences 214
Making the Unbearable Bearable 216
She Sang Him His Life 230
The Magic of Music 231
Thanks for the Good Scats 233
Within a Single Day 234
Our Last Father's Day 236
Hope for the Future: Passion for the Possible 241
Learning from Tragedy 243
The Capacity to Do Good 247
Finding Meaning in Chaos 252
It Doesn't Take Much 257
The White Coat 261
When the World Turns Upside Down: A Doctor Experiences Being a Patient 267
The Other Side of the Bed 273
Behind a Locked Door 278
Creating a Culture 283
Different Stories, Similar Echoes 293
To Fix, Help, or Serve 296
When One Is Overwhelmed 297
The Intensity of Memories 298
Moving On 299
Building the Momentum for Change 301
Leading the Way: Key Organizations Committed to Developing Meaningful Partnerships with Patients and Families and Improving the Experience of Care 303
Institute for Patient- and Family-Centered Care 303
The Schwartz Center for Compassionate Healthcare 305
Canadian Foundation for Healthcare Improvement 307
National Partnership for Women & Families 307
Other Organizations Contributing to the Momentum for Change 309
Useful Tools for Promoting Change 319
Patient- and Family-Centered Care: Definition and Core Concepts 319
A Call for a More Compassionate HealthcareSystem 321
Partners in Care-Conversation Starters: A Tool to Facilitate Discussion 325
Key Questions to Ask 327
Better Together: Partnering with Families Organizational Self-Assessment Survey 329
How to Conduct a "Walk-About" from the Patient and Family Perspective 332
Educating Health Care Professionals 336
Sharing Personal and Professional Stories 339
Selected Bibliographies 341
Furthering the Process of Change 342
Stories and Storytelling 347
About the Authors 363