Transcript Slide 1

Shared Decision-Making & Patient-Centered Care:
A Family’s Story
Interprofessional
Education (IPE)
Occasions when two or more professions learn
with, from and about each other to improve
collaborative practice and the quality of care.
(CAIPE 2002)
Shared Decision Making (SDM)
• Interactive process in which patients, families and
health professionals collaborate to choose health
care
• Scientific data, risks/benefits of all options (including
option of doing nothing)
• Patients values/preferences
• Essential for patient-centered care
• Charles C. et al., Soc Sci Med 1997;44:681-692
Shared Decision Making (SDM):
Health Professionals
• Most models limited to patient-provider dyad
• Not rewarded in most systems
• Need comprehensive and structured approach
• Formal SDM training and development of patient
decision aids
• Modification of health professionals’ attitudes
Shared Decision Making (SDM):
Patients and Families
• Patients’ Decision Support (PtDS)
• Patients’ Decision Aids (PtDA)
• Helping patients understand they can be involved
in choosing among various options
• Integrated approach involving interprofessional
team
• Interprofessional Collaborative Practice:
When multiple health workers from different
professional backgrounds work together with
patients, families, carers [sic], and communities to
deliver the highest quality of care.” (WHO 2002)
Family Case History
• 81 year old Chinese male (non-English speaking)
• Daughter (Yanling – Power of Attorney), Rex (son-in-law)
• Chronic medical conditions
• COPD
• CHF
• Atrial Fibrillation
• Mitral Stenosis
Family Case History
• 2007 cardiologist’s note at annual exam:
• “Rheumatic mitral stenosis, probably moderate in
severity … Left ventricular hypertrophy with
normal systolic function and moderately severe
pulmonary hypertension. Right ventricular
hypertrophy and mild right ventricular systolic
dysfunction. In addition a small pericardial
effusion is noted.”
Family Case History – living situation
• Lived at home with wife, daughter and son-in-law
• Home oxygen via nasal cannula
• Kidneys were compensating, blood pH normal and
stable at home
• Able to eat meals and enjoy family
• Family expectations
Family Case History – Hospital A
• March 2008 patient admitted for acute respiratory
distress (sudden & unexplained desaturation)
• The admitting ER doctor wrote in his report that the
patient was, “a well-developed, well nourished Asian
male, who appears to be in some respiratory distress,
although he is otherwise noted to be calm and alert.”
• After a couple of hours at ER with breathing treatments
the ER doctor wrote “symptoms subsequently improved
markedly and patient’s oxygen saturations were noted to
rise into the mid-90s on two liters, and his respiratory rate
decreased into the upper teens.”
• Was admitted for observation and recommended BiPAP
Family Case History – Hospital A
• Patient treated with IV antibiotics - improved
except he became dependent upon BiPAP
• Hospice care was recommended but patient and
family disagreed – they wanted to continue his
Palliative Care at home
• Physician wouldn’t release/discharge home unless
family chose hospice
• An agreement was made to send patient to Hospital
B just to wean him off of BiPAP and then home
Family Case History – Hospital A
• April 8 – patient discharged to Hospital B for
weaning of BiPAP
• The discharge doctor wrote in discharge
summary: “more alert and interactive, no new
complaints, O2 via Nasal cannula, stable for
discharge”.
• BUN 30 and creatinine 1.0.
Family Case History – Hospital B
• April 8 – patient admitted to Hospital B for
weaning off of BiPAP
• Healthcare team (daughter was interpreter)
• Met with Pharmacist to reconcile medications
• Met with nurse to discuss two previous sulfa allergic
reactions that had resulted in GI distress and small
bowel obstructions (red arm band applied noting
allergy to sulfa/sulfa drugs)
Family Case History – Hospital B
• Met with Social Worker to discuss expectations:
• Goals for the hospitalization (weaning)
• Father’s typical conditions at home
• Advanced directives (patient wanted no invasive or
artificial life support)
• What he would need at discharge (oxygen)
• Power of Attorney (daughter)
Family Case History – Hospital B
• Physician orders (prior to seeing patient)
• Insert feeding tube (family denied)
• Place central venous catheter (family denied)
• After seeing patient, physician ordered Diamox to
“reduce CO2” and “maintain BiPAP”
• Family concerned about medication as nobody had ever
suggested this drug
• Family was told that there were no risks
• Pharmacist noted concern to physician regarding use of
Diamox (sulfa drug and contraindicated in COPD pts)
Family Case History – Hospital B
• SHARED MENTAL MODEL
• If the plan was to wean patient off of BiPAP in
one week and then discharge, do you think the
family and healthcare team had a shared mental
model about the recommendations and plan?
Family Case History – Hospital B
• Late on the second day after two doses of Diamox,
the patient developed severe diarrhea
• Daughter looked up Diamox and noted it was a
sulfide drug and contraindicated for patients with
limited lung function
• Daughter voiced concern to nurse and physician
about Diamox
• Physician replied that he had a way to correct the pH
if it dropped significantly – the daughter wanted to
know what the plan was….
Family Case History – Hospital B
• Physician’s response to challenge:
• The daughter reports that the doctor got irritated and said
in a very arrogant voice: “I have been a pulmonologist for
25 years and have treated many COPD patients with
Diamox. You people need to stand back and let me do my
job.”
• The family reported feeling intimidated
• They learned couple of years later that the doctor had
never been board-certified in pulmonology
• They also learned that the pharmacist questioned the use
of Diamox in this patient but was ignored
Family Case History – Hospital B
• Shared Decision Making:
• Is the family attempting to participate in “shared
decision-making”?
• Is anyone on the healthcare team including
them in the decisions being made?
Family Case History – Hospital B
• Patients continued deterioration:
• See Table describing changes in labs and vital signs
• The daughter told an on-call physician working on a
weekend (when her father’s physician was away) that
her dad seemed to be having a reaction to Diamox
and that no one was listening to her concerns
• This physician said: “Look, I am not the one who gave
the medication.”
Family Case History – Hospital B
• Patient’s condition markedly deteriorated within
3 days:
• Difficulty breathing; in distress; severe hypotension;
acute systemic edema due to fluid overload; skin
blistering
• Days 4-12
• Increased dependency of BiPAP, unable to eat, kidney
failure, discharged to home on day 12
Family Interview (May 2013)
• You only spoke to the Pharmacist once during the
admission/medicine reconciliation of your father. What other
ways would you have welcomed the involvement of the
pharmacist in the care of your father?
• Family’s response:
Student Reflection Questions
• Have you ever seen teams that work effectively to
bring the patient or family into the conversation?
• How would you as a pharmacist or nurse bring the
patient (or family) into the conversation?
• What are the tools you learned at the TeamSTEPPS
session on May 14 that could help teams avoid this
situation in the future?
Family Interview (May 2013)
• When you read the records and found out the pharmacist
warned the doctor about the potential cross reaction between
Sulfa allergies and Diamox, how do you think the pharmacist
could have been a stronger advocate for your father?
• Family:
Student Reflection Questions
• What would you do if a provider was prescribing something that
had 2 contraindications?
• What issues might prevent you from speaking up or talking to the
family?
• What training could be helpful in teaching you how to speak up?
Family Interview (May 2013)
• You had experiences with the other member’s of the
healthcare team who had information about the possible
drug reaction. They didn’t come to you and say they were
concerned?
• Family:
Family Interview (May 2013)
• Please tell us what the healthcare team could have done
better to meet the needs of your family?
Family:
• 1. They should have told us about the drug risks
• 2. They should not have intimidated us to accept the drug
treatment
• 3. They should have been honest when we asked them
repeatedly about risks and the drug reactions
All of the above excluded my Dad and my family from making
a good, informed decision
Family Interview (May 2013)
What are some major points from your Dad’s Story that you would
like to share with us?
Family:
•Patients and families need to be treated with respect and be included as the
driver of the whole medical team.
•Concerns from patients and families need to be taken seriously and discussions
should be open and honest.
•Medical care providers should work as a team and keep everyone informed
about the patient’s need, medical history, treatment plans, medication
warnings, monitoring plans, etc.
•When there are signs of mistakes, medical professionals should not run away or
hide from patients and families. When in distress, the patients and the
family
are the ones who really need the information, help, and support.
•Doctors need to keep themselves up to date with advances in medicine. They
need to learn to listen to patients and families and treat them as partners in
the care team.
•Patients need to be informed about treatment risks, benefits, alternatives, and
potential outcome if doing nothing.
Family Interview (May 2013)
• I think the work you have done to get a law passed in WA State
to get the transparency around the information will be helpful
to future families. It’s a good outcome for patients/families.
• Family: It is a law that requires all medical boards to provide
patients and their families explanations on their case decisions.
The reason we pushed for this law was because the state Medical
Quality Assurance Commission provided us with nothing to help
us understand their decision about my father’s care. We believe
patients and families have the right to know this information.
Student Reflection Questions
• Why you think the healthcare team in this case was reluctant to
involve the family? Do you think language/culture played a part?
• After reviewing the charts there was no documented plan to
wean the patient off of BiPAP, yet this was the only reason he was
sent to Hospital B (by the physician at Hospital A). Do you think
there was a breakdown in communication between Hospital A
and Hospital B?
• Do you think that the health care team labeled the patient and
family as “difficult” because they asked so many questions about
the care?
• You may have formed your own opinion about the family. If you
knew that they were university faculty (PhD scientists with the
capacity to understand pH, acidosis, changes in kidney function)
would that change your opinion?
Family Interview (May 2013)
• I’m wondering if there is anything you wished I would have
asked you – any final comments?
• Family:
In Memory
ACKNOWLEGMENTS
• Yangling and Rex (family members)
• Marla Salmon, Dean Emerita
• Debra Liner
• Peggy Odegard, Skye McKennon, Phyllis
Christenson, Gail Johnson