5.3 Advance care planning

Question 1

List 2 reasons advance care planning has particular importance in palliative care

Answer 1

1. increasing incidence of serious, progressive conditions associated with prognostic uncertainty
2. the risk of loss of decisional capacity

Question 2

ACP has increasingly been considered a complex and ongoing process (rather than a document)

What is the internationally accepted definition of ACP?

Answer 2

ACP enables individuals with decisional capacity to:
- identify their VALUES
- to REFLECT on serious illness scenarios - to define GOALS and PREFERENCES for future medical treatment and care
- and to discuss these with FAMILY and HCPs.

ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains.

It encourages individuals to identify a personal REPRESENTATIVE and to RECORD and regularly REVIEW any preferences.

Question 3

List 5 potential benefits of ACP interventions shown in studies?

What is the evidence for effectiveness of ACP?

Answer 3

1. increased completion of advance care directives
2. better alignment of care to expressed preferences
3. better quality of communication in clinical consultations
4. improved quality of life
5. reduction of unwanted hospital admissions
6. increased use of palliative care

Quality of current evidence is limited
- ?may need whole system approach
- works best if patient, family, HCP all involved

Question 4

List 3 ways in which the current practice of ACP is falling short

Answer 4

1. ACP conversations take place INFREQUENTLY despite known benefit and patient&HCP interest and recognition of importance
2. Conversations about EOL care are taking place TOO LATE (close to death when patient too sick to participate)
3. Lower ACCEPTIBILITY of ACP due to cultural factors (e.g. truth telling is a burden that family filters for their loved one)

Question 5

List 2 barriers for ACP for each of the following:

1) Patient-related factors
2) HCP-related factors
3) System related factors

Answer 5

Table 5.3.1

PATIENT:
- insufficient knowledge of health situation (may be due to unpredictable disease course, difficult prognostication
- hesitation to discuss (anxiety/denial)
- expectation that physician will initiate ACP

HCP:

• hesitation, esp when patient looks well
• fear of taking away hope
• lack of training in EOL conversations
• time constraints
• difficulty defining right moment

SYSTEM:

• focus at treatment/cure
• lack of structured approach to ACP
• unclear responsiblities of initiating ACP
• lack of accessibility of documented goals/preferences
• limited resources

Question 6

You are a family physician looking after a patient John, with advanced COPD. You feel it is important to start the ACP process. You are unsure about John’s preferences for this discussion.

List 6 core elements to your approach over the next several clinic visits.

Answer 6

BOX 5.3.2.

1. Explore John’s understanding of ACP. Explain the aim of ACP, its content, barriers, facilitators, and local legal regulations.
2. Explore his readiness to engage in ACP and tailor the ACP process to it.
3. Explore John’s health-related experiences, knowledge, concerns, and personal values in the physical, psychological, social, and spiritual domain.
4. Explore his goals for future treatment and care.

Where appropriate, provide info about diagnosis and prognosis & pros/cons of possible treatment options.

5. Discuss the option of appointing a personal representative and the extent to which he allows them to participate in medical decision-making.
6. Inform about the option of advance care directive. Encourage John to provide family and HCPs with a copy of the advance care directive.
7. Discuss with John that documented goals and preferences can always be adapted.

Question 7

An international Delphi study made recommendations for the application of ACP (ie. HCP roles/tasks and timing of ACP). List 3.

**An important 2017 study in ACP, but not sure if worth memorizing for exam??

Answer 7

TABLE 5.3.2.:

1. Adopt patient-centered approach (align ACP convo to pt’s health literacy, communication style, values)
2. Have an openness to talk about diagnosis, prognosis, death and dying
3. Provide clear and coherent info about ACP
4. A trained non-physician facilitator can support ACP process but appropriate HCP needed for clinical elements
5. ACP can be initiated in health care or non-health care settings
6. Individuals can engage in ACP at any stage of life, but content should be more targeted as health condition worsens or they age
7. As values/preferences change, ACP should be updated regularly
8. Public awareness of ACP should be raised

Question 8

List 3 important considerations when raising public awareness of ACP

Answer 8

1. Ensure materials to raise awareness are culturally appropriate and piloted
2. Involve and educate younger people
3. Involve the community and build coalitions (i.e. co-writing materials with community members; peer educators linked to community group)