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http://www.healthcareneglect.com
PARTNERING WITH WRHA
LESSONS LEARNED
FROM PATIENTS & FAMILIES
EXPERIENCES IN HEALTH CARE
We would like to acknowledge that the perceptions and experiences portrayed
here, do not necessarily reflect the practices or quality of care given by many
health care professionals. We also acknowledge that many patients & family
members have had excellent experiences with the health care system.
“My mother died of lung cancer in 1980. From 1976 to 1980 every year
Patients’/Families’ her family doctor treated her for pneumonia. X-rays were taken three
Concerns out of five times. By the time that she was diagnosed, the tumour in her “I have been sick for 22 years with
left lung was large enough to completely block the lung and the tumour Fibromyalgia. When I've gone to the
About in the right lung was the size of an orange. I think these should have
been seen on the x-rays and investigated, but they were not. Had the
hospital with other problems they always
say it is Fibromyalgia and do not look for
Quality of Care growths been identified in 1976, perhaps my mother would have had a other things. I went to the hospital
Emergency for a problem and they said
chance to live past the age of 48!”
it was nothing just the Fibromyalgia. It
ended up being a heart problem that I
am still taking meds for.”
Incorrect Diagnosis
Failure to Diagnose
Or
Or Treat
Treatment
Inadequate Interaction
Among the Health “My husband’s niece is paralysed
Unsatisfactory from the waist down after giving
Care Medical Care Incompetence (Lack of birth to her second child because
Providers Themselves of an improperly administered
Fundamental Skills)
epidural. Finally received a
settlement seven years later (out
of court).”
“… In Canada … your Family doctor passes
you into the hospital care and a series of
disconnected Specialist doctors “do
things”, largely in isolation but with little
time to co-ordinate things and no time at
Lack of Clinical
all to pass back findings.” Follow-up
Deficient Bedside Care
Delayed Treatment
&
Monitoring of Patients
“My grandmother had a foot infection and
“ My husband died of meningitis -
was given antibiotics that were too strong
needlessly. He was told there was
“This example pertains to: my wife with Transverse for her--for 6 weeks. She wasn't monitored
nothing wrong and sent home from
myelitis; my mother with cancer and myself with kidney and it ended up killing both the good and bad
the hospital by ambulance because
stones. In all cases the nurses or doctors were more bacteria. The last 72 hours of her life, she
"he was unfit to travel by private
interested with getting me processed and out of the suffered miserably, unable to speak, eat, or
vehicle. Thirty-six hours later he fell
hospital, or finishing their shift. I had seen nurses gathered move. The specialist at this last hospital was
into a coma and later died.”
at their station gabbing when my wife needed help. When I so upset with what he'd learned that he
asked for assistance they made me feel like I was almost cried. Her death was imminent and
interrupting.” unnecessary, and definitely as a result of
neglect.”
“My wife said to the doctor, “My father is
“After emerging from a physiotherapy “They really messed up my 15-year-old daughter having a bad reaction to the medication
bath and sitting naked on a chair with no when she was in Riverview Hospital. I’ve and explained to him what was
towel, I started to shiver. The nurse came complained for a year and a half--to no avail. happening. He asked my wife, “Are you a
along and said to me: “Stop that!” I asked They just do whatever they want and damn the doctor?” My wife said, “No.” He said,
her for a towel, and eventually she went consequences to the patient and family.” “Then shut up you are not a doctor.”
and got one, at her convenience.”
Patients, families & Family Doctors Are
Denied Participation:
Interpersonal Relationship Skills Generally Lacking In During Patient Care
Health Care Providers &
In any Investigation And
Resolution of an Adverse Event
Inability to Interact
With Health
Care Providers “Seven years ago my father developed angina and was taking medication for the
condition. At that time a lot of doctors were anxious to do the balloon procedure, which is
so common now. However, I was of the opinion that since he had not had a heart attack,
and was able to have fair control of his condition with medication, that they should not
“mess with fate”. The upshot of it is that during the procedure, they blocked an artery,
which caused him to have a fatal heart attack. I, along with my brother decided to seek
assistance form the Patient Advocate who has an office at the hospital. She is a
Patient/Family- Registered Nurse, as well as, being a licensed lawyer, who was at that time not
practicing either of these professions. I agree that it would seem that she would be well
Centred qualified to speak to doctors and nurses and have a good understanding of medical
Care Obstacles practices as well as knowing the legal end of it. However, unfortunately, I found her
“help” to be next to useless. In retrospect, I guess it’s only obvious that a nurse who
works as a patient advocate in a hospital, being paid by the medical system, could only be
supportive of her “employers”, and would have nothing to gain from helping me. In any
event, my father was dead and she needed her job.”
Patient Advocates are Biased Towards the Health Care
Institutions They Serve. This Inhibits Effective Interaction
When Health Care Concerns, Raised by Patients and/or
Families, are Addressed & Resolved
Patient/Family- “ I have had three people close to me that died from
Centred medical neglect. I also used to work at a hospital and
know how things are run, and the staff and doctors even
Care Obstacles tried to tell me things that I knew I had the right to, but
even then if I tried to step on their toes, how would they
treat my family members once I was gone because of
this?”
Afraid of Backlash -
Seeking Involvement Might be
Construed as Interference &
Thereby Jeopardize Medical Care
Distressing Feelings
Frustration & Anger About the
Over Inadequate “ Should a member of my family be hospitalized for
Health Care System a potentially life threatening problem, I would
Care Displayed by ensure that someone was with them 24 hours a
Health Practitioners Mistrust in the Current Health day. Someone loud and obnoxious who is capable of
Care System Leading to chasing down the Doctors and Nurses and annoying
Fear of Not Getting Safe Care them enough to take action.”
“For over one year this lady who never complained to anyone in her life started
to have abdominal pain and back pain. She went to doctors asking for help, the
pain was severe. She had to quit her job of 25 years. She was sent to specialists
who told her they saw nothing wrong in her x-rays and blamed her pain on
depression, causing her to have perhaps some chronic pain and was prescribed Futility & Helplessness In
Tylenol #3 and anti-inflammatory pills and of course Prozac. Her pain became so Trying to Address the
intolerable that she could hardly get out of bed. She was reportedly brought to
the emergency ward of the Riverside Hospital where they simply sent her back
Difficulties Encountered
“My daughter…was operated on for endometriosis
home. Her suffering lasted for a year and a half. One night her son got very which she did not have. The surgeon took out her
angry and brought her to emergency again and told them that he was leaving her appendix to justify his operation. She has a case
there and no way was he taking her back home to suffer in agony. They finally against the doctors, but not much chance of winning
admitted her and within 7 days she died. They discovered at last that she had because she had not kept track of dates.”
died of ovarian cancer.”
Patients’/Families’
Recommendations The Health Care System Must be
“I have also heard some tragic accounts of people
sitting in Emergency rooms almost endlessly before
to Address the Changed to Prevent Adverse some receptionist calls you up to give them your
family history. Can they not delegate at least one
Issues Events
From Happening qualified Physician to screen or pair off people in need,
say into groups for example, according to the
seriousness of the complaint. They would be
experienced enough for the most part to differentiate
between the desperate and the hypochondriac,
surely.”
Health Care Providers Should be
Need for Health Care Held Accountable for Unsatisfactory
Patient Care if Their Actions
System Changes to Caused Adverse Events
Improve Patient Care “… Physicians, nurses and hospitals need to be held
accountable for their actions. Many doctors are
more concerned with the almighty dollar than the
welfare of their patients. Many medical schools admit
only those with the highest GPA rather than those
An Organization Outside the “Consumers” of the Health Care who would make the best physicians. This is where
Health Care System is System are Eager to Contribute to one change should be made. Medical schools need to
Needed to Facilitate & Ensure Solutions that will Result train compassionate doctors rather than textbook
Effective Change in Improved Patient Care physicians.”
“… Urgent and definite need for an
independent organization to push for a
change for better.” “I had a couple of suggestions to make. The first is the establishment of a
“national registry of medical/surgical complaints” which could be
implemented as a web site. Using a password to access the site, patients
could read complaints about physicians or surgeons or nurses involved in
their care. Or they could lodge complaints about things such as unnecessary
surgeries, or worse still, incompetent techniques, giving enough of a case
history to substantiate the claims. The second would be a requirement that
nurses and nursing assistants have a clear demarcation in duties, differing
education, and that they be educated to national standards to match the
requirements of their job descriptions.”
WHERE PATIENTS & FAMILIES ARE CONTRIBUTING
IN THE WINNIPEG REGIONAL HEALTH AUTHORITY
Patient Safety Advisory Councils Established
Patients Included on Medical Walk-Rounds
Patients Included on Patient Safety & Quality Research Councils
Patients’ Input Utilized in the Redesigning & Lay-out of Hospital Departments
Patients Included in Presentations to Medical & Nursing Students Regarding Patient Safety
Patient Safety Voice Facilitators Established & Hired Within the Region but Outside the Hospitals to Address Patient Concerns
Patients & Family Members Included in Safety Investigations
Research Conducted Seeking Patients & Family Members Perspectives/Recommendations to Address Health Care Safety
A Network of Patients/Family Members Facilitated to Partner in Implementing Safety Initiatives
Mechanisms Created for Patients/Families to Report Adverse Events
Legislation Explored Allowing For a Humane Response Subsequent to an Adverse Event (Liability free apology)
Health Care Advocates Promoted for each Patient (family members, friends)
Patients/Family Members Engaged in Administrative Processes (e.g hiring)
The Voices of Demographics Typically “Unheard” (e.g cultural minorities, women, elderly, disabled) Sought Out
http://www.healthcareneglect.com
Honey
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