I had dinner a few years ago with the 12 founding nurses of the Acute Care Geriatric Nurses Network (ACGNN) to reminisce about changes that had been made since that first day when the alarming results of the Coroner’s investigation had been made public. I asked them what they do if someone they love is going into the hospital. One shared that she was going through a situation with her mother and this is what she did: She put up a poster over her mother’s bed and it had a picture of her mum and the family and it said: Meet Noreen. She is a mother, grandmother, aunt, wife, and community activist. Thank you for caring for her. Please remember she doesn’t hear well in her left ear. She hates broccoli …” and a few other things that made her mother human to every caregiver walking in the door so it wouldn’t be just a ‘chart’ and a bed. I thought it an excellent idea. If we had done that with mum, Chilliwack Hospital staff wouldn’t have mistaken the symptoms for Alzheimer’s disease or dementia and would have known that she came into the hospital articulate, funny, and with everything doing well, except her hip. But once she started going downhill, the caregivers only saw what they saw: A senile old woman. No one looked to see what she had been when she entered the hospital so they treated her accordingly. If I had made that poster this would never have happened!
Always have an advocate present – with a notebook to take notes. Don’t worry about being persistent. Ask for the names of the doctors and nurses responsible for the care of your loved one. Ask questions about the treatment protocols and what drugs are being administered and when. Had we been vigilant and present, we would have been there to tell the nurses of our mother’s longstanding issues with Atavan and morphine. We had a blind trust in the system and it cost us our mother’s life.
If there is a medical incident as there was on the day after surgery of our mother, it is even more important to have an advocate present daily to notice any changes and ask questions. We mistakenly thought our father would notice these things; he saw only what he hoped to see – a woman who he desperately wanted home to make things ‘normal’ again. If you don’t have a family member available and can afford it, find a nurse advocate. If this is not possible, see if a retired or unemployed friend can take on the role. We have been told this is not necessary; that these individuals will just ‘get in the way’ but we disagree on this point. You need to be the advocate for your loved one. Unfortunately, in our family’s opinion the system is still too fragmented at times and continuity of care still too unreliable to take it for granted.
These are resources that we referred to over the course of investigating our mother’s death. We hope that you will find them helpful.
Empowered Patient Coalition
The Empowered Patient Coalition was created by patient advocates devoted to helping the public improve the quality and the safety of their healthcare. They have a project called www.engagedpatients.org that has many resources available to you as a member – especially these patient resources at: http://engagedpatients.org/category/hospital-guides/
The Guide to Hospital Care: Patient Journal is particularly helpful and provides form for journaling and taking down information.
Patient Safety Institute
Established by Health Canada in 2003, the Canadian Patient Safety Institute (CPSI) works with governments, health organizations, leaders, and healthcare providers to inspire extraordinary improvement in patient safety and quality.
This group has an excellent checklist:
The Patient Factor
The Patient Factor is an independent online source for news, views and commentary on Canadian health care.
Association for Patient Experience (Cleveland)
This association has a good resources section.
Open Arms Advocacy (Alberta)
Resource for Health Care Providers
Acute Care Geriatric Nurses Network
The Acute Care Geriatric Nurse Network (ACGNN) is dedicated to improved evidence based care for acutely ill older adults wherever they may be across the continuum of care. The ACGNN is a network of BC CNS’ (Clinical Nurse Specialists) aiming to provide evidence-based reference information to enhance nurses & allied health care teams knowledge and skills in the care of the acutely ill older adult in acute, sub-acute, rehabilitation, assisted living, residential, and home health care settings. Their resources for seniors can be found at: http://acgnn.ca/resourcelinks-documents-articles.html
After the Error: Speaking Out About Patient Safety to Save Lives, Susan McIver and Robin Wyndham, 2013
After the Error: Making Canadian Healthcare Safer is a collection of 20 stories from across Canada including the story of Esther’s Voice, It is the first book to recognize what patients, families, and immediate health care providers affected by medical errors have done to prevent others from enduring similar experiences.
Available at Amazon.ca and ECWPress.com
After Any Diagnosis, Carol Svec, 2001
Being diagnosed with an illness can be a time of worry, anxiety, and stress. The reality is that the labyrinth of medical information now available in magazines, health journals, mainstream media, and on websites can be overwhelming and sometimes even unsettling if you don’t understand how to use what you learn. Developing an information gathering strategy while facing these issues is essential and Carol lays it out in a clear and impactful way.
Available at Amazon.ca
After Harm: Medical Error and the Ethics of Forgiveness, Nancy Berlinger
Berlinger draws on sources in theology, ethics, religion, and culture to create a practical and comprehensive approach to addressing the needs of patients, families, and clinicians affected by medical error.
Available at Amazon.ca
Prescription for Excellence: How Innovation is Saving Canada’s health Care System by Michael Rachlis, MD
After selling out copies of his book, Dr. Rachlis generously has made his book available free on download.
To Err is Human: Building a Safer Health System
Linda T. Kohn, Janet M. Corrigan, and Molla S. Donaldson, Editors
Institute of Medicine, Nataional Academy Press
Landmark 1999 strategy document
Crossing the Quality Chasm: A New Health System for the 21st Century.
Available online: https://www.nap.edu/read/10027/chapter/1
If you have knowledge of any resources that you think would be helpful to add to our list, please let us know at firstname.lastname@example.org