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Flashcards in HealthPsyc6 Deck (29)

Case study, Lucy:
Diagnosed 2 days ago with breast cancer

Aged 37; married with one child (3 years old); would like another child
Decisions to make
• Surgery
• ‘Mastectomy’ versus ‘Lumpectomy + Radiotherapy’?
• Breast reconstruction?
• Immediate or delayed or not at all?
• More (adjuvant) “insurance” treatment?
• Chemotherapy?
• Hormone therapy?
• Fertility options?
• Fertility treatment prior to chemotherapy?
• Other decisions: Complementary therapy; Clinical trial

• Weighing up medical and personal concerns

My health /the benefits in terms of survival
& My ability to keep the family functioning/quality of life

• Effects of treatment on ability to have children, sexuality or body image
• Weighing up uncertain risks against uncertain side-effects (additional chemotherapy / hormone therapy)

20% risk/chance of relapse
(Likely) loss of fertility / onset of menopausal symptoms



(Professional-centred approach)
• Doctor is the Expert
• Protects patient from disturbing
• Takes away the burden of
• Projects confidence and care
• Dr makes the decision in patient’s best interests


Patient as “the consumer”

• Tells patient all the relevant information
• Is available to answer patient’s questions
• Does not make a recommendation
• Allows patient to reach his/her own decision


Shared decision-making (SDM)

• The SDM approach is positioned in
between the paternalistic and patientdirected
• A process in which the health professional
and the patient collaborate in making the
best use of evidence to make informed,
value-based decisions that they can both
agree upon
• Central tenet of SDM is that patients and
health professionals have different but
equally valuable perspectives and roles
within the medical encounter


Legislation and policy

• “Health programs should facilitate collaborative processes between patients, caregivers, and clinicians that engage the patient and caregiver in decision-making”. (US; 2010)
•“No decisions about me, without me” (UK, 2012)
• “Patients have a right to be included in decisions and choices about [their] care” (Australian Healthcare Charter of Healthcare Rights;
Australian Commission on Safety and Quality in Healthcare, 2008)


SDM Clinicians Expertise

Disease aetiology
Treatment options
Outcome probabilities


SDM Patients Expertise

Experience of illness
Social circumstances
Attitude to risk


SDM Approaches

• Many different approaches/models of SDM
• Charles et al (1997; 1999)
• Legare et al. (2011)
• Elwyn et al. (2012)
• No one accepted “gold standard” definition of SDM
• Approaches often similar in their essence, but have different names, stages, focus.


SDM Approach: Charles et al. (1997; 1999)

SDM Framework by Charles, Gafni & Whelan (1997, 1999)
• Pioneering model of SDM
• Most widely cited model of SDM (2040 citations)
• An encounter in which BOTH health professional and patient:

• Share information (Information exchange): physician informs the patient of all relevant information about available treatment options (e.g. risks/benefits); patient provides information about their preferences, values, beliefs, social context, and knowledge about the illness/treatment.
• Mutually deliberate on treatment options (Deliberation): process of expressing and discussing treatment preferences in an interactive process.
• Choose a treatment to implement (Decision): both parties work towards reaching an agreement and action plan to follow.

See slides for some good diagrams


SDM Approach: Legare et al. (2011)

Legare et al. (2011) Interprofessional Model of SDM
• Extends upon the pioneering models of SDM
• Adds additional health professionals to SDM model
• Acknowledges the significant roles of family and decision coaches
• Includes additional stages of DM
• Decision to be made
• Feasibility
• Implementation
• Outcomes

See slides again


SDM Approach: Elwyn et al. (2012)

Shared decision making: a model for clinical practice.
• Extends upon the “pioneering” SDM models
• Provides guidance about how to accomplish approach in routine clinical practice

• 3-step model: practical, easy to remember
• Based on
• Choice Talk (introducing choice)
• Option Talk (describing options, decision-support tools)
• Decision Talk (helping patients explore preferences and make decisions)
• Underpinned by process of deliberation

Shared decision making: a model for clinical practice.
• Acknowledges that DM may be an ongoing and progressive process and may be repeated over time
• Acknowledges that the SDM process begins early, well before the patient has informed preferences
• Choice talk: does not necessarily have to occur during a face-to-face consultation (email, letter, telephone call)
• Option talk: May include use of decision support (e.g. decision aids, option grids) and discussions with others


When should SDM be used

• One size does not fit all
• Patient preferences vary
• BUT… Particularly appropriate in preference-sensitive scenarios:
• Treatment outcomes are uncertain
• Quality of life may be affected
• Patient values determine the best outcome
• For example:
• Mastectomy vs lumpectomy + radiotherapy
• Adjuvant chemotherapy where benefit is small
• Cancer prevention interventions (e.g. tamoxifen)


Do patients want SDM?

• Australian survey (Davey et al, 2002): >90% of women preferred SDM re screening and diagnostic tests
• European survey (Coulter & Jenkinson, 2005; n>8,000): >70% of patients wanted SDM
• Should not be forced on patients- DM style should align with patient’s preferences
• Discrepancies between preferred and actual decision-making roles may lead to:
• Decreased patient satisfaction with care
• Decreased quality of life (Singh et al., 2010)


Is SDM Effective?

• Patients involved in SDM report increased:
• Overall satisfaction with their care
• Satisfaction with the doctor-patient relationship
• Satisfaction with the decision-making process
• Knowledge
• Quality of life
• Treatment adherence


SDM Patient Barriers

Conforming to social expectations of doctor/patient
• Emotionally vulnerable and emotional, possibly feeling
• Lack a medical vocabulary

There is great variability in the degree to which patients prefer to be involved in decision-making
Empowerment vs. Abandonment


SDM Doctor Barriers

• Not an easy task for the health professional
• Most not trained in SDM (particularly in Australia!)

Common misconceptions/myths:
• “Patients will feel unsupported when making decisions”
• “It will lead to longer consultations”
• “I already do this”
• “It will make people more anxious”
• “Not everyone can do this”
• “There is no evidence behind SDM”
• “SDM is too complex for some vulnerable patients (e.g. low health literacy)
- they won’t understand”
(Hoffman et al, 2014 – see reading)


Communication strategies/interventions for patients

• Coaching patients to ask questions (ASK)
• Decision Aids (DAs)
• Question-Prompt Lists (QPLs)
• Clinician strategies/interventions also exist (e.g. communication skills training)


Asking questions can help

• Study in a GP setting: standardised patients (actors)
• Patients (actors) coached to ask 3 questions:
1. What are my options?
2. What are the possible benefits and harms of those options?
3. How likely are the benefits and harms of each option to occur?
• Designed to prompt physicians to provide minimum information that
patients need to make an informed decision
• It worked! In consultations where patient-actors asked questions:
• doctors gave more information
• patients were more likely to share in decision-making
(Shepherd et al, PEC, 2011)


ASK Feasibility Study

4-min ASK video clip viewed by 121 participants:
• For those participants making a decision:
• 87% asked at least 1/3 questions and 43% asked all 3 questions
• 49% recalled all 3 questions two weeks post-consultation


Decision aids (DAs)

• Inform
• Provide evidence-based information about: the condition, ALL options, benefits and harms
• Communicate probabilities in a clear graphical form
• Clarify values
• Explore patient experiences
• Ask which benefits/harms matters most
• Facilitate communication
• Support process
• Guide in steps in deliberation/communication
• Provide worksheets, list of questions

• A surge in production of DAs
• The optimal format will depend on the clinical situation,
the patient population involved and any cost restrictions
• More detailed DAs seem more effective than simple DAs

• The International Patient Decision Aid Standards (IPDAS) – 2006
• road criteria to determine the quality of patient DAs

• DA inventories:
• the Ottawa Hospital Research Institute A to Z Inventory of DAs


How do DAs benefit patients

• Improve knowledge of screening/treatment options
• Facilitate more realistic and accurate expectations of possible benefits and harms
• Facilitate choices that are more consistent with patients’ values/what matters to them most
• Increase active participation in decision-making
• Improve doctor-patient communication
• Reduce overuse of major elective surgeries, PSA (prostate cancer) screening, and the choice to use menopausal hormones (HRT)


Question prompt lists (QPLs)

• “I just don’t know where to start- can I ask
questions? What questions do I ask?”
• Provide a list of common questions patients may
want to ask
• Questions may relate to:
• My illness – what is it (diagnosis)
• How serious is my illness (prognosis)
• Treatment options
• Benefits of treatments
• Costs of treatments
• Support for me and my family
• Invite patient to tick relevant questions, add
their own
• Are taken into consultation as a prompt
• Endorse question asking
• Both patients and doctors find QPL useful and helpful
• Increases likelihood of asking “difficult” questions
• More effective with Dr’s endorsement
• Can be used in subsequent consultations


Family involvement in DM

• Very little research on family involvement in DM
• However, family usually involved in some capacity

• Hobbs et al. (2015), US, N=5285 cancer patients
• Family controlled decision-making: 1.5%
• Shared decision-making with family: 49.4%
• Some family input: 22.1%
• Little family input: 28.5%
• Patients more likely to prefer greater family involvement if they were: married, female, older, from an ethnically diverse background (Asian, Hispanic)


How do family fit into the DM process

• Based on qualitative interviews, quantitative analysis of consultation audiotapes (Laidsaar-Powell et al., 2015; 2016;)
• Family involvement can extend across all stages of DM (and more)
• Involvement usually extends to: before, during, after consultation
• Additional stages to those proposed by Charles et al. (1997; 1999)


Decision making stages involving family

Pre consultation preparation
• Some FMs influenced which physician or hospital to attend
• Some FMs did research, pre-empted the treatment options, and discussed this with patient, other family, friends

Information exchange
• Inside consultation: family may listen to/provide information, take notes, ask questions, translate/simplify information for patient
• Outside consultation: family may recall and discuss consultation information with patient/others, research treatment options

• Spectrum- Supportive>> sounding board>> actively involved >> dominant
• In-consultation: family may support patient preferences, express own preferences
• Outside-consultation: patient-family may continue discussions- usually an ongoing, iterative, informal series of discussions about feelings between patient-FMs


Decision and Post Decision Family Stages

• Four overarching types of family influence over decisions

No family influence: Physician and/or patient controlled

Family influence through supportive actions

‘Shared’ patient and family influence

Controlling family influence

• Mostly family were either involved in “supportive” or “shared” capacity
• Mostly family involved in process but patient made the final decision

Post decision reflection
• A small number of patients and FMs reported continued discussions about decision after decision was made
• Discussed whether it was the ‘right’ decision, and whether they should change their minds


Attitudes towards family involvement in DM process: Patient as priority

• Most participants believed patient should have ultimate authority over decision- “It’s their body!”
• Many HPs stated patient wishes should be paramount
• Guided by laws protecting patient confidentiality and autonomy
• Family who compromise patient autonomy (e.g. conflicting treatment wishes, requests for non-disclosure) identified as a challenge by HPs


Attitudes towards family involvement in DM process: Rights of the family to be involved

• While emphasising patient rights, many also acknowledged that family deserve involvement in DM
• Acknowledged cancer and its treatment also affects the family emotionally and practically
• Some HPs appeared to have internal struggle between patient and family rights
• Some situations may call for greater family involvement- end of life, decisions affecting fertility or sexuality, treatments where family has to help


Attitudes towards family involvement in DM process: Balancing patient priority with family needs

• Family “influence” not necessarily a bad thing. Might be really appropriate or needed in certain situations- need to be flexible based on patient (and family) needs
• Family involvement does not necessarily mean family dominance
• Many FMs saw their own role as being ‘backup’ or ‘auxilliary’ to the patient, and self-censored their own opinions
• Many benefits of family involvement in DM process- feeling more informed, thinking more about decision, improved confidence about decision, feeling supported, shared burden