conf_present_073.ppt - Institute by fjwuxn


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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 Treat

         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
                                                                                                                                                                      “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

                                                                                          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.”
       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,

                                                                                                      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.”
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
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