Table 2.
Final set of recommendations on advance care planning with ratings, as provided by the panel in Delphi round 3 (agreement ⩾75%).
| Agreement (%) | Agreement (median) | IQR | Comments that were written by the panel in rounds 2 and 3 (n) | |
|---|---|---|---|---|
| Definition | ||||
| Extended definition: Advance care planning is a process that enables individuals who have decisional capacity a to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and/or other closely related persons, b and health-care providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative c and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions. |
91 | 1 | 1 | 30 |
| Brief definition: Advance care planning is a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons b and health-care providers, and to record and review these preferences if appropriate. |
94 | 1 | 1 | |
| Recommended elements of ACP | ||||
| 1. ACP is relevant for both patients and healthy individuals. | 79 | 1 | 1 | 11 |
| 2. The individual’s preferences should be explored regarding the extent to which ACP is discussed, as well as who to include in the ACP discussions. | 84 | 1 | 1 | 25 |
| 3. The ACP process includes an exploration of the understanding of ACP among the individual and family and/or other closely related persons b if the individual allows, and an explanation of the aims, elements, benefits, and limitations of ACP, as well as its legal status, if necessary. | 93 | 1 | 1 | 14 |
| 4. ACP should be adapted to the individual’s readiness to engage in the ACP process, and if allowed by the individual, the family and/or other closely related persons b may also engage in the ACP process. | 96 | 1 | 1 | 5 |
| 5. ACP includes the exploration of health-related experiences, knowledge, concerns, and personal values of the individual across the physical, psychological, social, and spiritual domains. | 97 | 2 | 1 | 15 |
| 6. ACP includes exploring goals and preferences for future medical treatment and care. | 97 | 1 | 1 | 5 |
| 7. Where appropriate, ACP includes information about diagnosis, disease course, prognosis, advantages and disadvantages of possible treatment, and care options. | 93 | 1 | 1 | 10 |
| 8. ACP includes clarification of goals and preferences for future medical treatment and care according to the individual’s degree of readiness; if appropriate, ACP includes an exploration to the extent to which these goals and preferences are realistic. | 91 | 1 | 1 | 11 |
| 9. ACP includes discussing the option and role of the personal representative, c who might act on behalf of the individual when he or she loses decisional capacity, according to relevant laws or social conventions in each sector. | 88 | 2 | 1 | 15 |
| 11. ACP might include the appointment of a personal representative(s) c and the documentation of such an appointment. | 88 | 2 | 1 | 15 |
| 12. ACP includes providing information about an advance directive, d and might include its completion according to relevant laws or social conventions in each sector. | 81 | 2 | 1 | 14 |
| 13. The content of ACP discussions is encouraged to be documented with permission of the individual. | 78 | 2 | 1 | 26 |
| 14. ACP includes supporting an individual to share their values, goals, and preferences with family and/or other closely related persons b and health-care providers, where appropriate. This includes sharing documentation of the ACP discussion with whosoever the individual wishes to. | 82 | 2 | 1 | 16 |
| Recommended consideration for a person-centered and family-based approach in ACP | ||||
| 15. It is desirable that ACP discussions between the individual and health-care providers also include people chosen by the individual to engage in the ACP process. These people may include family and/or other closely related persons. b | 93 | 1 | 1 | 12 |
| 16. When assisting individuals in making person-centered decisions, health-care providers should understand that individuals’ treatment preferences may sometimes be made in the context of their relationship with and responsibilities for others. | 96 | 1 | 1 | 11 |
| 17. ACP helps promote mutual understanding and shared decision-making between the individual and family and/or other closely related persons b regarding future medical treatment and care. | 94 | 1 | 1 | 10 |
| 18. Health-care providers and family and/or other closely related persons b should provide maximum support for individuals with physical or partial cognitive impairment to meaningfully participate in ACP. This may include revisiting the ACP discussion at various timepoints, using communication aids, and checking the individual’s capacity to understand and register information, to weigh options, and to communicate reasoning underlying decisions made. | 93 | 1 | 1 | 11 |
| Recommended roles and tasks | ||||
| 19. It is desirable for health-care providers to build a trusting relationship with individuals and their family and/or other closely related persons b before initiating ACP conversations, whenever possible. | 84 | 2 | 1 | 15 |
| 20. Health-care providers should ensure that the individual has a sufficient decision-making capacity to engage in the ACP process. | 87 | 2 | 1 | 16 |
| 21. Health-care providers should adopt a person-centered approach when engaging in ACP conversation with an individual and, if the individual wishes, their family and/or other closely related persons b to the extent desired by the individual; this approach requires tailoring the ACP conversation to the individual’s health literacy, style of communication, and personal values and preferences. | 96 | 1 | 1 | 8 |
| 22. Health-care providers should facilitate a shared understanding between the individual(s) and family and/or other closely related persons, b whenever possible, and ensure that ultimately, the individual’s preferences are respected. | 93 | 1 | 1 | 18 |
| 23. Health-care providers should be attuned to the emotions of individuals and their family and/or other closely related persons b in the process of ACP. | 91 | 2 | 1 | 5 |
| 24. Health-care providers need to have the necessary communication skills and show an openness to talk about diagnosis, prognosis, and death and dying with individuals and their families and/or other closely related persons. b | 99 | 1 | 1 | 4 |
| 25. Health-care providers should provide individuals and their families and/or other closely related persons b with clear and coherent information concerning ACP. | 91 | 1 | 1 | 10 |
| 26. Where appropriate, a multidisciplinary approach is encouraged to provide support in the ACP process, and this may include clinicians and/or trained non-clinician facilitators. | 81 | 2 | 1 | 14 |
| 27. The initiation of an ACP conversation can occur in any setting not just in health-care systems. | 87 | 1·5 | 1 | 14 |
| 28. Appropriate health-care providers are needed for the clinical elements of ACP, when necessary, such as discussing diagnosis, prognosis, treatment, and care options, exploring the extent to which goals and preferences for future medical treatment and care are realistic, and documenting the discussion in the medical file of the patient. | 88 | 2 | 1 | 11 |
| 29. In supporting the practice of ACP, there should be continual education for health-care providers about bioethical issues, knowledge, communication skills, regulatory frameworks, and implementation workflows related to ACP. | 99 | 1 | 1 | 6 |
| 30. Health-care providers should share contents of discussions upon the transition of care across settings. | 93 | 1 | 1 | 9 |
| 31. Within the health-care system, the health-care team in charge of an individual should encourage opportunities for ACP facilitation, according to the readiness of an individual. | 97 | 1 | 1 | 9 |
| 32. Colleagues with appropriate training and experience in ACP are encouraged to support the health-care teams in charge upon request. | 94 | 2 | 1 | 9 |
| 33. Health-care providers should promote shared decision-making between the health-care providers and individuals as well as family and/or other closely related persons b during the ACP process. Ultimately, the shared discussions should always help to achieve the goal of respecting the patient’s preference. | 93 | 1 | 1 | 11 |
| 34. Health-care providers should respect the faith, belief system, and culture of each individual throughout the process of ACP. | 99 | 1 | 1 | 6 |
| Recommended timing of ACP | ||||
| 35. Individuals can engage in ACP at any stage of their life, but its content can be more targeted as their physical or cognitive health worsens or as they age. | 76 | 2 | 1 | 15 |
| 36. ACP conversations and documents should be updated periodically as an individual’s health condition, treatment plan, values, and preferences might change over time. | 96 | 1 | 1 | 8 |
| 37. Public awareness of ACP should be raised, especially about the aims and content of ACP, its legal status, and how to access it. | 96 | 1 | 1 | 10 |
| Recommended elements of policy and regulation | ||||
| 38. Health authorities should provide policy and ethicolegal guidance on ACP as a reference. | 84 | 2 | 1 | 11 |
| 39. A system should be built to capture the contents of ACP conversation and the information should be made visible across the health-care continuum. | 87 | 1 | 1 | 17 |
| 40. It is desirable that individuals be guided in their selection of a personal representative c to indicate treatment and care preferences when the individual loses capacity. | 78 | 2 | 1 | 12 |
| 42. Advance directives d may also include any format that is acceptable within guidelines and/or laws of the sectors, in order for the individual to indicate his or her values, goals, and preferences in more detail. | 78 | 2 | 1 | 1 |
| 43. Health-care organizations should be aware of the importance of ACP and create opportunities for its initiation and review. | 91 | 2 | 1 | 14 |
| 44. Health-care organizations should develop a collaborative system to support the individual’s decision-making by multidisciplinary health-care providers in any setting (e.g., hospital, care facility, and community). | 88 | 2 | 1 | 8 |
| 45. Reliable and secure systems should be created to store copies of official or medical ACP-related documents for ease of retrieval, transfer, and update. | 91 | 1 | 1 | 11 |
| 46. Governments should play a part in supporting efforts related to ACP development. | 91 | 1 | 1 | 14 |
| 47. Health-care organizations should secure appropriate funding and organizational support for ACP including time, education, and training for health-care providers. | 94 | 1 | 1 | 7 |
| 48. Health professional bodies and policy makers should recognize that the results of an ACP process guide medical decision-making. | 84 | 2 | 1 | 15 |
| 49. Health-care systems should have processes in place to ensure that an individual’s preferences in ACP are shared with all those concerned with the individual’s care, with permission of the individual. | 87 | 2 | 1 | 9 |
| Recommended evaluation of ACP | ||||
| 50. Depending on the study or project aims, we recommend the following constructs be assessed: | 0 | |||
| Process outcomes domain | ||||
| Behavior change constructs | ||||
| Knowledge of ACP (rated by individuals, family and/or other closely related persons, b and health-care providers) | 81 | 2 | 1 | |
| Self-efficacy to engage in ACP (rated by individuals, family and/or other closely related persons, b and health-care providers) | 85 | 2 | 1 | |
| Readiness to engage in ACP (rated by individuals, family and/or other closely related persons, b and health-care providers) | 91 | 2 | 1 | |
| Willingness to engage in ACP discussions (rated by the individual, family and/or other closely related persons, b and health-care providers) | 88 | 2 | 1 | |
| Perception constructs | ||||
| Prognostic awareness (rated by individuals, family and/or other closely related persons b ) | 88 | 2 | 1 | |
| Understanding of end-of-life care (rated by individuals and family and/or other closely related persons b ) | 94 | 2 | 1 | |
| Action outcomes domain | ||||
| Communication and documentation | ||||
| Personal representative constructs | ||||
| Identification of a personal representative c | 79 | 2 | 1 | |
| Values and preferences constructs | ||||
| Identification of the individual’s values, goals, and preferences | 94 | 1 | 1 | |
| Communication about values, goals, and preferences between the individual and family and/or other closely related persons b | 90 | 1 | 1 | |
| Communication about values, goals, and preferences between the individual and health-care providers | 91 | 1 | 1 | |
| Congruence between an individual’s stated wishes and personal representative’s reports of an individual’s wishes | 78 | 2 | 1 | |
| Documentation of values, goals, and preferences | 94 | 2 | 1 | |
| Documents and recorded wishes to be accessible when needed | 93 | 2 | 1 | |
| A flexible process that allows regular updates of ACP discussions and documents over time | 94 | 1 | 1 | |
| Quality of care outcomes domain | ||||
| Care consistent with goal constructs | ||||
| Whether care received was consistent with the individual’s expressed goals and preferences | 91 | 2 | 1 | |
| Satisfaction with care | ||||
| Quality of end-of-life care | 85 | 2 | 1 | |
| Satisfaction with decision-making | ||||
| Decisional conflict (e.g., within individuals, among individuals, families and/or other closely related persons, b and/or health-care providers) | 82 | 2 | 1 | |
| Satisfaction with communication | ||||
| Extent to which ACP was considered meaningful and helpful (rated by individuals, family and/or other closely related persons, b and health-care providers) | 90 | 2 | 1 | |
| Quality of ACP conversations (rated by individuals, family and/or other closely related persons, b and facilitators or health-care providers, or both) | 85 | 2 | 1 | |
| A clinician’s provision of prognostic information tailored to individual/family readiness | 88 | 2 | 1 | |
| Health-care outcomes domain | ||||
| Health status and mental health | ||||
| Psychological distress (rated by individuals, family and/or other closely related persons, b and health-care providers) | 85 | 2 | 1 | |
| Peace of mind (rated by individuals and family and/or other closely related persons b ) | 76 | 2 | 1 | |
| Preparation for end of life (rated by individuals and family and/or other closely related persons b ) | 91 | 2 | 1 | |
| Quality of life (rated by individuals, family and/or other closely related persons, b and health-care providers) | 76 | 2 | 1 | |
| Care utilization constructs | ||||
| Use of life-sustaining treatment | 81 | 2 | 1 | |
| Place of death | 75 | 2 | 2 | |
| Use of palliative care | 84 | 2 | 1 | |
| Miscellaneous | ||||
| The level of public awareness of ACP | 79 | 2 | 1 | |
| 51. We recommend identifying or developing outcome measures based on these constructs and using relevant outcome measures on an as-needed basis so that results can be pooled and compared across studies or projects; these outcome measures should have sound psychometric properties, be sufficiently brief, and validated within relevant populations. | 85 | 2 | 1 | 2 |
ACP: advance care planning; IQR: inter-quartile range.
Agreement (%): Of the total participants in the Round 3 survey (n = 68), percentage of panelists who gave the Likert response options “strongly agree” or “agree”; answering categories: 1 = strongly agree; 2 = agree; 3 = agree somewhat; 4 = undecided; 5 = disagree somewhat; 6 = disagree; 7 = strongly disagree. Agreement (median): Of scores on the Likert scale that were given by panelists, indicating agreement. Inter-quartile range (IQR): Of scores on the Likert scale that were given by panelists, indicating consensus.
a
Decisional capacity: A person must be assumed to have capacity unless it is established that he or she lacks capacity, and all practicable steps must be taken to empower the individual to maximize his or her decisional capacity in the ACP process.
b
Other closely related persons: “Other closely related persons” are those trusted by an individual, and may include, but are not limited to, significant others, close friends, donees of a lasting power of attorney, and court-appointed deputies, according to relevant laws or social conventions in each region.
c
Personal representative: A personal representative is appointed by the individual to speak for himself or herself once he or she lacks capacity to make decisions. Some regions have legislation for personal representatives, and others do not. In the former, relevant laws will be followed. In the latter, roles of personal representatives are often played by the individual’s family and/or other closely related persons nominated by the individual who regularly participate in ACP discussions.
d
Advance directive: An advance directive is a document that explains how the individual wants medical decisions about himself or herself to be made if he or she cannot make the decisions himself or herself. In regions where an advance directive and/or personal representative are not legalized, an “advance directive” indicates ACP-related documents to record values, goals, and preferences to be considered when the individual is unable to express their preferences.