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Patient Narratives

Important to our association is the collection of patient narratives that document patients' experiences with the health system. Through the collection and articulation of these narratives, we hope to gain a more thorough understanding of the patients' perspective on both current health care services and the criteria that describe patient sensitive care.

NEW: This collection of narratives will feed PAC's new User Guide project. Volunteers will seed the User Guide with your stories and then post corresponding and/or related material. The new material will take the form of a Wiki and will be editable; however, your stories will not be.

We invite you to share your story with us. Please email us your story and we'll post it on the site.

Click here for more information on patient narratives.

"Just Relax and Try Not to Move"
I almost laughed when I heard that. Of course, that might have made me move, so I remained "calm". Or as calm as I can be lying on my back with my shirt off in a doctor's office. One of the office's attendants was administering a test on me. Another was on the phone at a nearby desk calling patients to reschedule their appointments. Apparently the specialist was no longer available on an...
'A Case History - A Family Perspective', An Exercise in Appreciative Inquiry
My Aunt was given a wash and set, and a full mani pedi as a birthday present from her gentleman friend on his birthday. That night, they were going to his birthday party and he wanted her to look just right. The birthday present included a taxi fare to and from her house to the hair stylist. When the cab came to pick her up, she leant forward to tell the driver her correct address. He looked back...
A Family's Struggle with Dementia: Margaret's Story
My mom was diagnosed with ovarian cancer in November 2009. She died in August 2010 at 76 years old. The disease that dominated her life, though, was dementia. Margaret’s Life Prior to Moving to a Care Facility My mother was independent, intelligent and very private. She had very strict boundaries and questions about her health and finances were off limits. My father died, after a brief illness,...
A few Short Stories
1. The patient had a head on collision with a tree stump while tobogganing, the impact being great enough to throw her somersault style over the stump. This patient had been a St. John Ambulance attendant for a few years and knew well the risk of “hair line fractures”. Such injuries can go undetected until movement suddenly leaves the victim a quadriplegic. When her headache, rather than...
A Lack of Quality in Healthcare: Sue Jacklin
I have a number of 'chronic' conditions and illnesses. I've had the same Family Doctor for the last twenty or so years, but since she and her partner had started this practice as a 'Walk-In Clinic', it became quite a busy office over time. While the doctors' regular patients were given top priority for appointments during the first few years, in the last 5 years, that has changed. Getting an...
A Son's Death
My son was killed due to negligence and incompetence at our local hospital while in the care of three doctors and one nurse. I have complained to the College of Physicians and Surgeons and to the Ontario Nurse’s College regarding the providers. I suspect that the regional coroner tried to cover up for the doctors , and I have since complained about him to the college and to the chief coroner of...
A Story of Misdiagnosis: Trisha Torrey
Trisha Torrey is Every Patient’s Advocate, a mission she began after a heinous misdiagnosis of cancer in the summer of 2004. Told she had a rare and aggressive lymphoma and had only months to live without chemo, she instead used her wits and chutzpah to prove the two confirming reviews of her biopsy were — wrong. This is her story (as originally published on Trisha's patient advocacy blog): I’m a...
An Account of Frustration with the System
Late last year, at the age of 51, I got sick for the first time ever. My family doctor couldn’t figure out what was wrong with me, so she told me to go to the ER. I resisted this for several weeks because I hadn’t been shot or anything. We should not be delivering primary health care via the ER – it’s much too expensive! After about two months, without any other options offered by my family...
Cancer And Nutrition: How I Built My Own House Of Healing
In her essay “Illness as Metaphor,” Susan Sontag discusses the danger in associating metaphors with cancer. The metaphors our culture has attached to cancer, Sontag argues, also attach a stigma to the disease, and cast undeserved blame upon the patient. She addresses the fact that we often use warfare metaphors when discussing cancer. Cancer cells “invade” and “colonise”; a patient fights a “...
Doug Gosling's Cancer Story
Doug Gosling was diagnosed with prostate cancer at forty-nine. "I came to realize that cancer was really two diseases in one," he says. "A physical disease of the body and also an emotional disease - a cancer of the mind, if you will." Here is an excerpt from Doug's book: We had reached a new threshold. From that point on, there would be many more visits to the hospital - more tests, more drugs...
I Let Her Die: A Story of Suicide by Starvation
What does it mean to be a human being? What does it mean to live a dignified life? Should the two not go together? When a person no longer has any real awareness of her existence, no recognition of previously loved friends and family, no control over body functions, no ability to feed herself, is this a dignified life? Is this a human existence? How much worse the situation must be to a...
I thought I Knew a lot about Being a Caregiver
I thought I knew a lot about being a caregiver. After all, I had parented three children born within five years, successfully weathering teething, toilet training, schooling, even adolescence, and now I could enjoy 3 responsible adult offspring. My introduction to caregiving as a parent however, paled beside responsibilities I was later to assume as a caregiver to my adult loved ones. As the...
In Response to CBC's 'Listen To Me' Program: Rick Wark
Rick Wark sent PAC this letter after hearing Sholom Glouberman speak with Dr. Goldman on CBC's 'White Coat, Black Art' which aired February 11, 2011. On August 07, 2007 I was in New Mexico for a work conference. On the last evening of the conference I went for a bicycle ride. The bicycle front tire became stuck in a rut and threw me through the air and I hit a tree.
Joseph Capone's Story
My name is Phil Capone, and I live in the City of Vaughan – just north of Toronto, Ontario.Perhaps like most people who have previously had minimal contact with the health care system, I had always thought very highly of healthcare professionals and hospitals, generally considering them epitomes of competence and virtue – and, I essentially trusted them unconditionally.But, my experiences in...
Learning from the Patient Experience
In 2009, Mike noticed a sudden change in his wife’s short term memory. He was aware that her behavior may have been indicative of a stroke, and so he took Vickie to a nearby emergency room. After being admitted to the hospital, she was put on medications to reduce her blood pressure and reduce stroke risk; her regular medications were put on hold until they could make a better assessment of her...
Lynda's Ongoing Patient Story
I read with fervor the article on CBC.CA - Patients' Rights question and answer. I must commend you on your courage. There are a lot of ethical people in the medical profession who wouldn't dare speak out like you've done. One of the questions that was asked during the interview was: 'How did this experience lead to the formation of the Patients' Association of Canada'? My story relates very...
Meds on Placement: Patient Story
Catherine Bourgeois (name has been changed) is a nurse researcher – a colleague at one of the research areas in which I work. She often came to me with stories about her father’s care. He could no longer live independently, so he moved into an old folk’s home in the small town where he had lived for many years. In the dining room every resident had an assigned place that was marked with their...
Michelle's Story
I am writing about the experience my sister, Michelle, had while staying on the 17th floor of Princess Margaret hospital from December 4, 2009 until December 22nd, at which point she moved to the palliative ward. My sister was a patient at PMH for 5.5 years, following her diagnosis of Stage IIIc ovarian cancer in 2004. Michelle received excellent care at PMH. Her original oncologist is a...
My Foot Surgery: Nina Krakovna
This story is a part of my complaint to the College of Surgeons and Physicians of Ontario (CSPO) I was referred to Dr. West in 2007 by my family physician, Dr. Oleg Livshin, for a bunion operation on my feet. The first and the only pre-operation appointment with Dr West. He recommended a joint replacement surgery. He said that it was a routine operation and that he had done hundreds of them. This...
Patient Story: To Sleep or not to Sleep?
Ron, the Chief Executive Officer of a prominent health care organization prepared for his operation by having a long discussion with his surgeon. He was especially hopeful to avoid a total anesthetic because he did not want to suffer from the after effects and really needed a shorter recovery time to speed up his return to work. The surgeon agreed that in his case it was possible to use a strong...
Patients Educating Doctors: Jean Dann
I had cataract surgery in Alberta this past year. The eye surgeon that performed the procedure works out of several hospitals in the Edmonton area. The days that I had my surgery there were 20 patients, the usual number. First, I was shocked that the doctor did not speak to me, either before or after the procedure. He was very rough in adjusting the head rest and I actually had a sore neck after...
Pressure on GPs: Patient Story
A prominent Canadian publisher went to his family doctor for his annual check. At the end of it he said that he had a few other things he wanted to ask her. “Make another appointment,” she said as she turned and left the examining room. He was startled and later, after consulting his medical friends about his two questions, he realized that it would have taken her two or three minutes, at most...
Tara's Patient-led Bibliotherapy Project
I first became a patient when I was a year old. I was diagnosed with severe asthma and I spent a full year in a respiratory unit in Toronto. I even went to school there during the day. It was a difficult experience for me. I was homesick and missed my family tremendously. The nurses were very kind and took good care of me. Instead of doing everything for me, they educated me on how to care for my...
The Gift: Paul Kocher's Experience With Necrotizing Fasciitis
This story is dedicated to my wonderful wife, Lisa. We all know that when you get married you sign up “for better or for worse…in sickness and in health”. Lisa has had to live that reality in spades for well over a year now. She has been there for me when I needed it most. While I like to believe we already had a strong marriage, this situation has made it even stronger. I guess sometimes you...
The Pear
What is care?What is caring?What is the “care” in healthcare”?What is the worth of a pear.It’s Sunday September 30th, and in 6 days it will be one year since I found myself in the Emergency Room for the second time, afflicted with appendicitis (which I fondly refer to as “Appendicitis II”).  Now, I am enjoying a day of knitting, yoga and quiet and, a pear.
The Value of a Patient Advocate
In 2006 I helped my Mother through the final stages of her cancer to her death; the weeks we spent in the hospital at the end of her life were degrading and something she didn’t deserve.We were brought to a hospital other than the one her GP was associated with due to the ambulance being diverted by a dispatcher. We had no choice but to go where we were sent.At this new hospital, my mother was...
When a Patient Isn't Heard
This is an account of my patient experience. I am writing with the hope that something can be done so that no other person has to go through what I did. The pain and suffering I had to endure was unnecessary and could have been avoided if the first health care professionals I came into contact with had listened to me and put their arrogant egos aside. I have contacted my local health region but...
You Call Yourselves Doctors
 Iatrogenic Insanity.  You are a Survivor "You are a survivor" said a psychiatrist whom I had consulted eight years previously for a second opinion.  He remembered me.  I did not remember him.  My memory of the past eight years is wobbly.  The 20 years before that are almost totally blank.  "You are a survivor" is the only positive thing a doctor...

Patient Narrative

Below is a collection of opinions regarding patient narrative:

"Narrative medicine is based upon physicians' awareness of patients' narration of their suffering, their hopes, and how illness has affected them. It offers a model for improving health outcomes."

Excerpts below found in Narrative Based Medicine.

"Most obviously, it connects the teller and the listener. One cannot begin mentally to construct a narrative without immediately (if implicitly) imagining an audience."

In the diagnostic encounter, narratives:
•are the phenomenal form in which patients experience ill health;
•encourage empathy and promote understanding between clinician and patient;
•allow construction of meaning;
•may supply useful analytical clues and categories.

In the therapeutic process, narratives:
•encourage a holistic approach to management;
•are themselves intrinsically therapeutic or palliative;
•may suggest or precipitate additional therapeutic options.

In the education of patients and professionals, narratives:
•are more memorable;
•are grounded in experience;
•enforce reflection.

In research, narratives:
•set a patient-centred agenda;
•challenge received wisdom;
•generate new hypotheses.

Ed. Greenhalgh, Trisha and Hurwitz, Brian. Narrative Based Medicine: Dialogue and Discourse in Clinical Practise. MBJ Books, 1999. (p. 7)

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