Shared Decision Making: Partnering
with People to Support Informed
Healthcare Decisions
Etta Mitchell, LMSW
September 23, 2011
Wellness Focus
• Focused on the ‘whole person’- integrated
physical and mental health care
• Learning to provide healthcare management,
bringing together all domains of treatment to
one cohesive resource.
Critical Care
• We serve an ‘at risk’ population with a lifespan of up to 25 years
less than the average population.
• Healthcare challenges such as diabetes, obesity, cardiovascular
disease, respiratory disease, infectious diseases, suicide, and
mortality.
• Lack of well coordinated care a contributor
• Work, support, encourage, and care with a sense of URGENCY!!
(Parks, Svendsen, Singer, Foti, & Mauer, 2006)
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Freddie
Michael
Sue
Patty
Burt
Francis
Media
Shaylynn
David
This is Not About Statistics.
It’s Personal!
It’s Personal
Science—Suffering
Treatment---Healing
Empirical Facts----Hope
Population Samples---Individuals
Statistical Problem---Me
Typical Medical Intervention
• Average appointment with a physician 15-20 minutes
• Within an appointment, the physician must:
– Establish a ‘therapeutic alliance’
– Gather information- history, mental status, lab results, key
issues
– Treatment Planning- safety, adherence, side effects,
general medical conditions
– Establish a diagnosis and treatment goals- share
information with the individual, prescribe intervention
– Action-referrals, order labs, complete documentation,
provide educational resources, determine follow up
appointment.
Consequences
• Frustration with care because people feel they do
not have input into decisions that effect health
and lifestyles
• Wasted resources on appointments not kept and
prescriptions filled but not taken
• 1/3 of the people that enter into care, disengage.
• Use of emergent care and crisis services increase
(Deegan, 2010)
Medication Trap
Symptoms
increase, I can’t
take care of my
kids
I want to be a
good mother
I take my
medication and
do what my
doctor says to do
I stop taking
medications
My medications
make me sleepy.
I am unable to
get my kids on
the school bus
Substance Use Trap
My friends are very
important to me. We
party together every
weekend
I take my medications
and follow directions,
but I miss my friends!
I am told not to party
anymore. If I do, my
doctor will refuse to
treat me. I will be drug
tested.
When we party, I
forget to follow my
plan for diabetes but I
do pretty well during
the week
I get sick, and end up
in the hospital
I know I need to but…..
I love to cook southern
food for my family.
Family dinners make me
feel close to them.
No one likes my new
food and my family stops
coming to dinner
I try to change the way I
cook but I don’t know
how, and I get food from
the food pantry that is
not on my special diet
I have high blood
pressure and southern
food is full of salt and
sugar
I don’t feel good, I go to
the doctor. She tells me
no more southern
cooking.
Shared Decision Making
• A experience where clinicians and patients talk about what
is important to the individual and how it is impacted by
healthcare challenges. They discuss the diagnosis and best
evidence based treatment options. Recognizing that some
medical choices are not as simple as ‘compliance’ and ‘noncompliance’, individuals are supported to think about the
benefits and costs of all options. This leads to a consensus
in the treatment plan, which is sometimes a compromise
on both parts.
• Term first used in the ‘President's Commission for The
Study of Ethical Problems in Medicine and Biomedical
Research’ in 1998.
• Expanded to include mental and physical healthcare.
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Pat Deegan & Associates
Foundations of Shared
Decision
Making
• The person is able to share what is most
important to them, their motivation for
wellness.
“Working at the library is the most important thing to me right
now. I need help to management my diabetes and depression
so that I can be a good clerk.”
**This message should be personal and not about symptom abatement
• The person is informed about their diagnosis and
possible treatments.
Foundations of Shared
Decision Making
• There is a change in the doctor-patient
relationship. There are now to experts in the
room.
– The person is empowered to ask questions,
express concerns and disagreement, and engage
in clinical discussions.
– The clinician learns to start conversations that
promotes shared decision making, and expresses
respect for the individual’s values, preferences,
and right to choose.
Foundations of Shared
Decision Making
• A team approach to include the individual,
friends and family members, social workers,
therapists, CSSs, nurses, and other clinicians.
Anyone that the individual identifies as a
support!
– Supplements the brief medical appointment
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Educational materials and resources
Peer support
Decision aides
Support with decisional uncertainty
How Can You Help?
• Assist the individual access information about
the diagnosis that is clear and easy to read.
• Encourage them to develop questions to ask
in the medical appointment- write them
down.
• Support the individual to practice having
difficult medical discussions- stating what is
most important to them and knowing how to
disagree or express concern.
How Can You Help?
• Support them with decisional uncertainty
Many decision aides available:
www.bcbs.com/betterknowledge/tec/
www.Cochrane.org
http://decisionaid.ohri.ca/decguide.html
www.informedmedicaldecisions.org
http://effectivehealthcare.ahrg.gov
http://mentalhealth.samhsa.gov/consumersurvivor
Great work creating “Cool Tools”
www.healthwise.net
Decisional Aides
• Created by unbiased sources with unbiased
content
• Peer support and recovery stories
• Support groups
• Booklets, articles, CD Rom
• Worksheets to weigh benefits to risksImportant to assign importance or value to
each
item
Pat Deegan and Associates
Non Compliance
• Compliance communicates a paternalistic
stance regarding healthcare decisions
• Adherence is a personal and complicated
decision, not an arbitrary one.
Decisional Uncertainty
with Medication
• People have several reasons for decisional uncertainty regarding
medications:
Side effects
Meds unhelpful
Health Concerns
Interactions with other medications
Interactions with substance use
Need more support
Exploration
Logistics- co-pays and transportation
Confusion
Beliefs
Fears
Motivation
Pat Deegan & Associates
Antipsychotic Medication
• Questions often asked by consumers:
• Which one will present the least risk for metabolic
dysregulation?
• Will I gain weight and get diabetes?
• Will it cause sexual dysfuntion?
• Can I use alternative options such as vitamins,
psychotherapy, or watchful waiting?
• What if I get pregnant?
• What about hair loss or tremors?
• What about sudden death?
• Be open to exploration, not dismissive
Decisional Aide
Yeah...but….
• People do not know enough to make informed
medical decisions
• There is not enough time in the appointment.
• I am not going to prescribe whatever patients
want!
• What if people make the ‘wrong decisions’?
Listen, present options with facts, arrange for
decisional support and peer support
More Concerns
• People that say, “I don’t have a mental illness.”
Avoid the power struggle! Build common ground by
discussing what is important to them, how their life is
impacted. It does not matter if they accept the label, focus
on the impact of quality of life.
• People who are not able to make decisions for
themselves.
• Help to create advance directives and proxy decision
makers, in essence a good crisis plan.
• Not appropriate for emergencies, people without
capacity- Alzheimers, intoxication, delirium
Research
• Has indicated that the decision making process for people with
mental health diagnoses do not differ from people with other major
medical diagnoses. In fact, they express and increased desire to
participate. (The MacArthur Treatment Competence Study, 1995)
• Shared Decision Making
– Increases favorable health outcomes (Kaplan, Greenfield, & Ware, 1989)
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Empowers people to make decisions
Reduces anxiety
Promotes recovery
Increases adherence (Guadagnoli & Ward, 1998).
Leads to reduced demand for healthcare resources
Reduces medical cost DNKA rate, unused medications (Devine & Cook, 1983)
Bottom Line
• People want good information
• People want to feel listened to
• People want a say in things that affect their
lives
• People have the right and ability to make
decisions about treatment!!
Laurie Curtis, SAMHSA 2010
BE THE DIFFERENCE
References
Adams, J., Drake, R.,& Wolford, G.(2007). Shared decision-making preferences of people with severe mental illness. Psychiatric Services 58, 1219–1221.
Devine, E. & Cook,T. (1983). A meta-analytic analysis of effects of psychoeducational interventions on length of postsurgical hospital stay.
Nurs Res, 32 ,267-74.
Deegan, P. (2010). A description of a web application to support shared decision making. Psychiatric Rehabilitation Journal, 34(1):23-8.
Deegan, P., & Drake, R. (2006). Shared decision making and medication management in the recovery process. Psychiatric Services, 57, 1636–1639.
Drake, R.., Deegan, P., & Rapp, C. (2010). The promise of shared decision making in mental health. Psychiatric Rehabilitation Journal, 34(1),713.
Drake, R., & Deegan, P. (2009). Shared decision making is an ethical imperative. PsychatricServ.60, 1007.
Greenfield ,S., Kaplan, S., & Ware , J. (1985). Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med, 102, 5208.
Greenfield ,S., Kaplan, S., & Ware J.(1988). Patients’ participation in medical care: effects on blood sugar control and quality of life in diabetes.
J Gen Intern Med, 3(5), 448-57.
Grisso, T., Appelbaum, P., Mulvey, E., & Fletcher, K. (1995). The MacArthur treatment competence study. II: Measures of abilities related to
competence to consent to treatment. Law and Human Behavior, 19(2), 127-148.
Guadagnoli, E., & Ward, P. (1998). Patient participation in decision-making. Soc Sci Med , 47(3), 329-39.
Kaplan, S., Greenfield, S., & Ware, J. (1989). Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med
Care , 27, 110-27.
Parks, J., Svendsen, D., Singer, P., Foti, M., & Mauer, B. (2006). Morbidity and Mortality in People with Serious Mental Illness. National
Association of State Mental Health Program, National Association of State Mental Health Program Directors, Medical Directors Council,
Alexandria Virginia.
President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry (1998). "Quality First: Better Health Care for
All Americans“
http://www.samhsa.gov/consumersurvivor/SDMWebinar/html/slide_001.html