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Flashcards in HealthPsyc6 Deck (29)
1

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

2

Paternalism

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

3

Patient-directed/Autonomous:
Patient as “the consumer”

Doctor
• 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

4

Shared decision-making (SDM)

• The SDM approach is positioned in
between the paternalistic and patientdirected
approaches
• 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

5

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)

6

SDM Clinicians Expertise

Diagnosis
Disease aetiology
Prognosis
Treatment options
Outcome probabilities

7

SDM Patients Expertise

Experience of illness
Social circumstances
Attitude to risk
Values
Preferences

8

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.

9

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

10

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

11

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

12

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)

13

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)

14

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

15

SDM Patient Barriers

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

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

16

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)

17

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)

18

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)

19

ASK Feasibility Study

4-min ASK video clip viewed by 121 participants:
• https://www.youtube.com/watch?v=vVnTw9ldX8I
• 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

20

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
• http://decisionaid.ohri.ca/index.html

21

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)

22

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
• http://www.cancerinstitute.org.au/patient-support/what-i-need-to-ask

23

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)

24

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)

25

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

Deliberation
• 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

26

Decision and Post Decision Family Stages

Decision
• 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

27

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

28

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

29

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