ASF Standards · Long-Term Care · Standard 6
Standard 6 — End-of-Life & Palliative Care
Criteria in this standard
6.1 — Advance Directives Are Discussed Proactively, Not Only When a Crisis Arrives
6.2 — Palliative Care Is Available Regardless of Terminal Diagnosis
6.3 — Hospice Coordination Follows a Real, Written Agreement, Not Informal Handoff
6.4 — Pain and Suffering Are Actively Anticipated and Treated, Not Just Responded To
6.5 — Family Is Genuinely Included in End-of-Life Decisions, Not Just Informed
6.2 — Palliative Care Is Available Regardless of Terminal Diagnosis
6.3 — Hospice Coordination Follows a Real, Written Agreement, Not Informal Handoff
6.4 — Pain and Suffering Are Actively Anticipated and Treated, Not Just Responded To
6.5 — Family Is Genuinely Included in End-of-Life Decisions, Not Just Informed
6.1
Advance Directives Are Discussed Proactively, Not Only When a Crisis Arrives
Non-Negotiable
Every resident, or their legal representative, is proactively offered a genuine conversation about advance directives and life-sustaining treatment preferences at admission and periodically thereafter — not first raised during a medical crisis, when there is far less time and far more distress to make a considered decision.
In plain terms: Every resident or their representative is offered a proper conversation about advance directives and treatment wishes — early, calmly, and repeated — not only when a crisis forces the question.
| Facility category | Crisis | Transition | Small | Standard |
|---|---|---|---|---|
| Applicability | Adapted | Full | Full | Full |
Why this matters
The question 'would she want to be resuscitated?' asked in the ambulance at 3am to a daughter who has never discussed it produces the wrong answer and lifelong guilt. The same conversation held at admission, with time, with the resident participating while they still can, produces a considered decision that honours what the person actually wanted. Proactive means: offered to every resident within the first month, held by someone trained, documented in a way that is accessible at 3am, revisited annually and after any significant change, and — critically — followed. A directive that exists but is not found or not followed is worse than none.
What good looks like
- Every resident or representative receives a genuine, proactive advance directive conversation.
- Preferences are periodically revisited, not captured once and forgotten.
- Documentation is genuinely accessible to staff when actually needed.
Common failure modes
- Advance directives are raised only during a medical crisis, if at all.
- Preferences are captured once at admission and never revisited.
- Documentation exists but isn't practically accessible in a real emergency.
Worked example
In practice
A 60-bed care home where advance care planning happened, if at all, in hospital during emergencies.
BeforeNo advance care planning process. Residents were sent to hospital by default when they deteriorated. Several with advanced dementia had been resuscitated or ventilated against what families later said they would have wanted. Directives that existed were in family homes, not the care home record.
ActionAn advance care planning process was introduced: a trained nurse offers a conversation within 30 days of admission covering the resident's values, treatment preferences, resuscitation, hospitalisation, and who decides if they cannot; the resident participates as far as able; the outcome is documented on a standard form at the front of the record and flagged on the handover; the conversation is repeated annually and after any significant change; the physician reviews and signs. Emergency transfer protocols check the directive first.
AfterThe Monitor reviewed 40 resident records: 38 with completed advance care plans, all accessible at the front of the record; two declined and documented. Reviewed three emergency events where the directive was checked and followed. Hospital transfers down 30%. Verified.
If you are starting from zero — do this first
- Count residents with a documented advance care plan. Below 80% is a gap.
- Train two nurses in advance care planning conversations.
- Offer a conversation to every resident within 30 days of admission.
- Put the outcome at the front of the record and on the handover.
The most common mistake: Waiting for the crisis to ask — the crisis is the worst possible time to ask.
Self-assessment questions
1. Is every resident or representative proactively offered a genuine advance directive conversation at admission? — A real, offered conversation, not paperwork provided without discussion.
Evidence: Advance directive conversation record
Evidence: Advance directive conversation record
2. Is this conversation revisited periodically, not held once and never referenced again? — Genuine, periodic revisiting, not a single admission-only conversation.
Evidence: Periodic review record
Evidence: Periodic review record
3. Are documented preferences genuinely accessible to staff at the moment they're actually needed? — Real, practical accessibility in a genuine emergency, not a document filed away and hard to locate.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
Common reasons for a PARTIAL answer
- The conversation happens at admission but isn't revisited even after a significant change in the resident's condition. — A resident's preferences, or their ability to express them, can genuinely change over time.
- Documentation is thorough but stored in a way that's slow to locate during an actual emergency. — Documentation that exists but isn't practically accessible in the moment provides limited real protection.
- Conversations happen with legal representatives but the resident themselves, where capable, isn't directly included.
Implementation plan
| When | What |
|---|---|
| Week 1 | Review current advance directive practice for genuine proactive conversation versus paperwork alone. |
| Week 2 | Establish a periodic review schedule for advance directive preferences. |
| Week 3 | Confirm documentation is genuinely, practically accessible during an emergency. |
| Ongoing | Revisit preferences after any significant change in resident condition. |
How the Monitor verifies this
| Method | What | Detail |
|---|---|---|
| DOCUMENT | Advance directive conversation review | Reviews documentation of genuine, proactive advance directive conversations at admission. |
| DOCUMENT | Periodic review record check | Reviews evidence that advance directive preferences are genuinely revisited over time. |
| OBSERVE | Accessibility check | Checks whether documented preferences would actually be accessible to staff during a real emergency. |
Supervisor tips
- Ask staff how quickly they could locate a specific resident's advance directive during a real emergency. — A specific, confident answer reveals genuine practical accessibility, not just documentation existing somewhere.
- Ask a resident or family member whether the conversation felt genuine, not just a form to sign. — This tests lived experience of the conversation, not documentation compliance alone.
Evidence base
[26] The United Nations Principles for Older Persons establish the right of older persons to make decisions about their own care, a principle reflected in established long-term care practice as the resident's right to formulate advance directives, with the facility required to provide written information about these rights and to address resident complaints about facility non-compliance.
ASF training courses on GMJ Academy →
Foundation courses A-00 to A-03 are live. Criterion-specific modules are being developed and will link here when published.
6.2
Palliative Care Is Available Regardless of Terminal Diagnosis
Non-Negotiable
Palliative care — addressing physical, emotional, social, and spiritual suffering — is genuinely available to any resident who could benefit, not restricted to residents with a terminal diagnosis or treated as identical to, and conditional upon, hospice enrollment.
In plain terms: Palliative care — relief of physical, emotional, social, and spiritual suffering — is available to any resident who would benefit, not only those with a terminal cancer diagnosis and a prognosis.
| Facility category | Crisis | Transition | Small | Standard |
|---|---|---|---|---|
| Applicability | Adapted | Full | Adapted | Full |
Why this matters
A resident with advanced dementia, heart failure, COPD, or frailty is dying — slowly, over months or years — and suffering along the way: breathlessness, pain, anxiety, isolation, loss of meaning. Palliative care addresses this. Yet it is often reserved for cancer, or for the last two weeks, because 'they're not dying yet.' The palliative approach — assess suffering in all its forms, treat what can be treated, support the person and family, plan for what is coming — applies from the moment a resident has a life-limiting condition. Every care home resident has one.
What good looks like
- Palliative care is genuinely available regardless of terminal diagnosis.
- Staff accurately understand and can explain the real distinction from hospice.
- Palliative care genuinely addresses the full range of suffering, not physical symptoms alone.
Common failure modes
- Palliative care is treated as available only for residents with a terminal diagnosis.
- Staff conflate palliative care with hospice, treating them as the same thing.
- Palliative care is narrowed to physical pain management alone.
Worked example
In practice
A 70-bed care home where palliative care meant referral to hospice in the last week of life.
BeforeResidents with advanced dementia, heart failure, and frailty received active care until they were obviously dying, then hospice was called. Breathlessness in COPD residents was untreated for months. Spiritual needs were not assessed. Families were unprepared for death because no one had said the word.
ActionA palliative approach was adopted for all residents with life-limiting conditions: a palliative needs assessment (physical symptoms, emotional, social, spiritual) at admission and quarterly; symptom management protocols for breathlessness, pain, anxiety, and agitation; access to a chaplain or spiritual care; regular family meetings about the trajectory; a link with the community palliative care team for complex needs. Staff completed a palliative care course. 'Would I be surprised if this resident died in the next year?' is asked at every quarterly review.
AfterThe Monitor reviewed 30 palliative needs assessments with symptom management plans, chaplaincy records, family meeting notes, and staff training records. Interviewed a family who described being prepared for their mother's death. Verified.
If you are starting from zero — do this first
- For every resident, ask: 'Would I be surprised if they died this year?' If no, they need a palliative approach.
- Assess suffering in all four domains for those residents.
- Write symptom protocols for breathlessness, pain, and anxiety.
- Arrange chaplaincy or spiritual care access.
The most common mistake: Reserving palliative care for the last week — the suffering started months earlier.
Self-assessment questions
1. Is palliative care genuinely available to any resident who could benefit, not restricted to those with a terminal diagnosis? — Real availability independent of terminal prognosis, not conflated with hospice eligibility.
Evidence: Palliative care availability documentation
Evidence: Palliative care availability documentation
2. Do staff genuinely understand the distinction between palliative care and hospice, not treat them as interchangeable? — Genuine, accurate understanding of the real distinction, not confusion between the two.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
3. Does palliative care genuinely address physical, emotional, social, and spiritual suffering, not medical pain management alone? — The full, genuine scope of palliative care, not a narrowed version limited to physical symptoms.
Evidence: Palliative care scope documentation
Evidence: Palliative care scope documentation
Common reasons for a PARTIAL answer
- Physical symptom management is genuinely available broadly but emotional and spiritual support is less consistently offered. — Genuine palliative care addresses the full range of suffering, not physical symptoms in isolation.
- Some staff understand the real distinction from hospice but others use the terms interchangeably. — Consistent, accurate understanding across the full care team matters for residents to receive appropriate access.
- Palliative care is offered when a resident or family specifically asks but not proactively identified as an option.
Implementation plan
| When | What |
|---|---|
| Week 1 | Review current palliative care access for genuine independence from terminal diagnosis status. |
| Week 2 | Train staff specifically on the real distinction between palliative care and hospice. |
| Week 3 | Expand palliative care scope to genuinely address emotional, social, and spiritual suffering. |
| Ongoing | Proactively identify and offer palliative care to residents who could genuinely benefit. |
How the Monitor verifies this
| Method | What | Detail |
|---|---|---|
| DOCUMENT | Availability review | Reviews whether palliative care is genuinely available independent of terminal diagnosis status. |
| ASK | Staff distinction interview | Asks staff to explain the actual difference between palliative care and hospice. |
| DOCUMENT | Scope review | Reviews palliative care documentation for genuine coverage beyond physical symptom management alone. |
Supervisor tips
- Ask a staff member to explain the actual difference between palliative care and hospice. — A clear, accurate answer reveals genuine understanding, not assumed familiarity.
- Ask about palliative care for a resident without a terminal diagnosis specifically. — This tests whether availability is genuinely independent of terminal status, not conflated with hospice eligibility.
Evidence base
[27] Established international clinical definitions of palliative care describe it as patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering, addressing physical, intellectual, emotional, social, and spiritual needs, distinct from and not conditional upon a terminal diagnosis or hospice election.
ASF training courses on GMJ Academy →
Foundation courses A-00 to A-03 are live. Criterion-specific modules are being developed and will link here when published.
6.3
Hospice Coordination Follows a Real, Written Agreement, Not Informal Handoff
Non-Negotiable
When a resident elects hospice care, the facility and the hospice agency operate under a specific, written agreement clearly defining who is responsible for each service — not an informal handoff where responsibility gaps go unnoticed until something is missed.
In plain terms: When a resident is receiving hospice care, the home and the hospice work under a written agreement that says exactly who does what — not an informal understanding that leaves gaps.
| Facility category | Crisis | Transition | Small | Standard |
|---|---|---|---|---|
| Applicability | Adapted | Full | Full | Full |
Why this matters
A hospice nurse visits twice a week and prescribes morphine. Who administers it between visits? Who is called at 2am when the resident is in pain? Who tells the family? Who manages the other medications? When the hospice and the home each assume the other is doing it, the resident suffers in the gap. A written agreement defines: the hospice's responsibilities (assessment, symptom management plan, prescriptions, on-call), the home's (daily care, medication administration, monitoring, communication), how they communicate (shared plan, contact numbers, escalation), and how disagreements are resolved. It is signed by both and reviewed annually.
What good looks like
- A specific, written agreement clearly defines responsibility for each service.
- Staff can confidently identify who is responsible for specific aspects of care.
- A real process exists for identifying and closing coordination gaps.
Common failure modes
- Coordination relies on informal or assumed division of responsibility.
- Staff are uncertain who is responsible for specific hospice resident care needs.
- No process exists for identifying gaps before they result in a missed need.
Worked example
In practice
A 50-bed care home working with two hospice agencies under informal arrangements.
BeforeHospice involvement was arranged by phone. No written agreement. A resident on hospice care spent a night in severe pain because the home's nurses did not know they could give the PRN morphine the hospice had prescribed, and the hospice on-call number was not in the record. The family complained to both organisations; each blamed the other.
ActionA written agreement was negotiated with each hospice: hospice responsibilities (initial and ongoing assessment, symptom management plan, prescriptions, 24-hour on-call, staff education, bereavement support); home responsibilities (daily care, medication administration per hospice plan, monitoring and reporting, family communication); shared documentation in the resident's record; contact numbers on the front page; a monthly review meeting. Home nurses were trained in the hospice symptom protocols.
AfterThe Monitor reviewed both signed agreements, three resident records with shared hospice plans and on-call numbers, and the monthly meeting minutes. Interviewed a home nurse who described the escalation route. Verified.
If you are starting from zero — do this first
- Ask your nurses: if a hospice resident is in pain at 2am, what do you do and who do you call?
- Write an agreement with each hospice defining every responsibility.
- Put the hospice on-call number on the front of every hospice resident's record.
- Train home nurses in the hospice symptom protocols.
The most common mistake: Assuming the hospice 'takes over' — the home still provides 90% of the care and must know its role.
Self-assessment questions
1. Is there a specific, written agreement with the hospice agency defining responsibility for each service? — A real, specific written agreement, not an informal or assumed division of responsibility.
Evidence: Hospice coordination agreement
Evidence: Hospice coordination agreement
2. Can staff clearly identify who is responsible for a specific aspect of a hospice resident's care? — Specific, confident knowledge of the actual division of responsibility, not uncertainty or assumption.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
3. Is there a real, documented process for identifying and closing a coordination gap if one is discovered? — An active process for catching gaps, not an assumption the written agreement alone prevents them.
Evidence: Coordination gap identification process
Evidence: Coordination gap identification process
Common reasons for a PARTIAL answer
- The written agreement is comprehensive but staff aren't fully familiar with its specific terms. — An agreement that exists but isn't genuinely known by staff provides limited real coordination benefit.
- Responsibility is clear for medical care but less clear for personal care and daily support. — Every category of care needs the same clear definition to prevent a genuine gap.
- A gap identification process exists but hasn't been genuinely tested with a real coordination issue.
Implementation plan
| When | What |
|---|---|
| Week 1 | Review current hospice coordination agreements for specific, comprehensive responsibility definitions. |
| Week 2 | Brief staff thoroughly on the specific terms of the agreement. |
| Week 3 | Establish a real process for identifying and closing coordination gaps. |
| Ongoing | Review hospice coordination for any real gaps that emerge in practice. |
How the Monitor verifies this
| Method | What | Detail |
|---|---|---|
| DOCUMENT | Written agreement review | Reviews the actual written agreement with the hospice agency for specific responsibility definitions. |
| ASK | Staff responsibility interview | Asks staff to identify who is responsible for a specific element of a current hospice resident's care. |
| DOCUMENT | Gap identification process review | Reviews the process for identifying and closing coordination gaps between facility and hospice. |
Supervisor tips
- Ask to see the actual written agreement for a current or recent hospice resident. — A specific, real document is the evidence of genuine coordination, not an assumed arrangement.
- Ask a staff member a specific question about who handles a particular need for a hospice resident. — A confident, specific answer reveals genuine clarity, not uncertainty papered over.
Evidence base
[28] Established long-term care regulatory principles, recognized in various forms across many countries' care standards, require a written agreement between the facility and any hospice or palliative care service specifying which entity is responsible for each element of the resident's care.
ASF training courses on GMJ Academy →
Foundation courses A-00 to A-03 are live. Criterion-specific modules are being developed and will link here when published.
6.4
Pain and Suffering Are Actively Anticipated and Treated, Not Just Responded To
Non-Negotiable
A resident's pain and suffering — physical, emotional, social, spiritual — are actively anticipated and proactively addressed as part of ongoing care, not left until the resident reports significant distress, particularly for residents whose cognitive or communication impairment makes reporting pain genuinely difficult.
In plain terms: Pain and suffering — physical, emotional, social, spiritual — are anticipated and treated ahead of time as part of the care plan, not only responded to when the resident cries out.
| Facility category | Crisis | Transition | Small | Standard |
|---|---|---|---|---|
| Applicability | Adapted | Full | Full | Full |
Why this matters
A resident with osteoarthritis will be in pain every morning when she is moved. A resident with advanced heart failure will be breathless at night. A resident whose daughter has stopped visiting will grieve. A resident who was devout and can no longer attend services will suffer spiritually. Each of these is predictable and each can be anticipated: analgesia before morning care, positioning and a fan for breathlessness, a call to the daughter, a chaplain's visit. Responding only to expressed distress means residents suffer until they can make it known — and those with dementia or aphasia may never make it known.
What good looks like
- Pain and suffering are proactively, genuinely assessed on a regular basis.
- A specific, adapted assessment approach exists for residents with communication impairment.
- Assessment genuinely covers the full range of suffering, not physical symptoms alone.
Common failure modes
- Assessment happens only when a resident reports distress themselves.
- The same self-report method is used regardless of a resident's actual communication ability.
- Assessment is narrowed to physical pain, ignoring emotional, social, or spiritual suffering.
Worked example
In practice
A 60-bed care home where pain was treated 'as needed.'
BeforeAnalgesia was PRN, given when a resident reported pain. Residents with dementia rarely reported it and received almost none. Morning care for residents with arthritis was accompanied by cries and resistance, interpreted as 'behaviour.' Emotional and spiritual suffering was not assessed. No anticipatory approach existed.
ActionEvery resident's care plan now includes an anticipatory suffering assessment: known sources of physical pain and their triggers, emotional needs, social connections, spiritual needs. Interventions are scheduled, not PRN: regular analgesia timed before care for those with chronic pain; a pain scale for dementia (PAINAD) with each set of observations; a fortnightly emotional wellbeing check; spiritual care by preference. Morning care is preceded by analgesia for those who need it.
AfterThe Monitor reviewed 25 care plans with anticipatory interventions, PAINAD records, and observed morning care for a resident with arthritis who received analgesia 30 minutes before and was calm. Verified.
If you are starting from zero — do this first
- For each resident, list what predictably causes them pain or distress.
- Schedule the intervention before the trigger — analgesia before morning care.
- Use a dementia pain scale with every observation set.
- Add emotional and spiritual needs to the care plan.
The most common mistake: Giving pain relief when the resident cries out — for many residents, crying out is the only way they can tell you it is too late.
Self-assessment questions
1. Is pain and suffering actively, proactively assessed, not only addressed when a resident reports distress? — Genuine, proactive assessment, not reliance on the resident to initiate a report.
Evidence: Proactive pain assessment documentation
Evidence: Proactive pain assessment documentation
2. Is there a specific approach for assessing pain in residents whose cognitive or communication impairment makes self-reporting difficult? — A specific, adapted assessment approach, not the same self-report method applied regardless of communication ability.
Evidence: Non-verbal pain assessment tool
Evidence: Non-verbal pain assessment tool
3. Does assessment genuinely cover emotional, social, and spiritual suffering, not physical pain alone? — The full, genuine scope of suffering, not narrowed to physical symptoms.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
Common reasons for a PARTIAL answer
- Proactive assessment happens for residents who can self-report but relies on observation alone for those who cannot, without a structured tool. — A structured, validated approach for non-verbal residents provides more reliable identification than observation alone.
- Physical pain is proactively assessed but emotional and spiritual suffering are addressed only reactively. — The full scope of suffering deserves the same proactive attention as physical pain specifically.
- A non-verbal assessment tool exists but isn't consistently used by all staff.
Implementation plan
| When | What |
|---|---|
| Week 1 | Review current pain and suffering assessment practice for genuine proactive versus reactive approach. |
| Week 2 | Establish or strengthen a structured, validated assessment tool for non-verbal residents. |
| Week 3 | Expand assessment scope to genuinely cover emotional, social, and spiritual suffering. |
| Ongoing | Audit assessment consistency across all staff and shifts. |
How the Monitor verifies this
| Method | What | Detail |
|---|---|---|
| DOCUMENT | Proactive assessment review | Reviews documentation for genuine, scheduled proactive pain and suffering assessment. |
| DOCUMENT | Non-verbal assessment tool review | Reviews the specific tool or approach used for residents with communication impairment. |
| OBSERVE | Scope observation | Observes whether assessment genuinely covers emotional, social, and spiritual dimensions, not physical pain alone. |
Supervisor tips
- Ask what specific tool is used to assess pain in a resident who cannot verbally communicate. — A specific, named tool reveals genuine, structured practice, not reliance on informal observation.
- Ask how emotional or spiritual suffering is proactively identified, not just physical pain. — This tests whether the full scope of suffering is genuinely addressed.
Evidence base
[29] Established international clinical definitions of palliative care describe anticipating, preventing, and treating suffering as central to genuine palliative practice, distinct from reactive response to reported distress alone.
ASF training courses on GMJ Academy →
Foundation courses A-00 to A-03 are live. Criterion-specific modules are being developed and will link here when published.
6.5
Family Is Genuinely Included in End-of-Life Decisions, Not Just Informed
Core
Family members are genuinely included as participants in end-of-life care decisions and planning conversations — not merely informed of decisions after they've already been made by clinical staff.
In plain terms: Family members take part in end-of-life decisions and planning — they are asked, listened to, and included — not just told what has been decided.
| Facility category | Crisis | Transition | Small | Standard |
|---|---|---|---|---|
| Applicability | N/A | Full | Adapted | Full |
Why this matters
A family that was informed their mother is dying, but not asked what she would have wanted or how they want to be involved, carries grief compounded by exclusion. Genuine inclusion means: family meetings at each stage of decline, with time and a trained facilitator; the family's knowledge of the resident's wishes sought and honoured; their preferences about being present, about the place of death, about rituals, elicited and accommodated; disagreements acknowledged and worked through. The home is a home; the family is part of it.
What good looks like
- Family members are genuine, active participants in end-of-life decisions.
- Families have real opportunity to ask questions and raise concerns before decisions are finalized.
- Families report feeling genuinely included, not just informed.
Common failure modes
- Family members are informed of decisions after clinical staff have already finalized them.
- No real opportunity exists for family questions or concerns before finalization.
- Families report feeling excluded or only nominally consulted.
Worked example
In practice
A 50-bed care home where families were called when a resident was 'actively dying.'
BeforeFamilies were informed of decisions — hospital transfer, comfort care — after they were made. The end-of-life call came in the final hours. Families reported feeling excluded and unprepared. One daughter learned her father had been placed on comfort care from a care assistant.
ActionFamily meetings were built into the care pathway: at admission (advance care planning), at any significant deterioration, at the transition to end-of-life care, and after death. A trained nurse facilitates; the physician attends key meetings; the family's understanding, wishes, and preferences are documented; a named family contact receives regular updates; the family is invited to be present and participate in care at the end. A bereavement follow-up call is made at four weeks.
AfterThe Monitor reviewed 15 end-of-life records with documented family meetings at each stage and family preferences honoured. Interviewed two bereaved families who described being fully included. Verified.
If you are starting from zero — do this first
- Ask three recently bereaved families how they were involved in end-of-life decisions.
- Build family meetings into the pathway at admission, deterioration, and end of life.
- Train a nurse to facilitate.
- Document the family's wishes and preferences.
The most common mistake: Informing families of decisions rather than making decisions with them.
Self-assessment questions
1. Are family members genuinely included as participants in end-of-life decisions, not just informed afterward? — Real, participatory inclusion, not notification of decisions already finalized.
Evidence: Family participation documentation
Evidence: Family participation documentation
2. Are family members given genuine opportunity to ask questions and express concerns before decisions are finalized? — A real opportunity before finalization, not a decision presented as already settled.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
3. Do families report feeling genuinely included, not just informed, in end-of-life decision-making? — Real, reported experience of inclusion, not assumed from the process alone.
Evidence: N/A — tested directly
Evidence: N/A — tested directly
Common reasons for a PARTIAL answer
- Inclusion is genuine for major decisions but day-to-day comfort care adjustments aren't discussed with family. — Ongoing comfort care decisions matter to families too, not only major turning points.
- Family is included when readily available but less consistently when family members live at a distance. — Genuine inclusion shouldn't depend on a family member's physical proximity or availability.
- Conversations happen but families report feeling rushed rather than genuinely heard.
Implementation plan
| When | What |
|---|---|
| Week 1 | Review current end-of-life decision-making practice for genuine family participation versus notification. |
| Week 2 | Establish a process ensuring family opportunity to ask questions before decisions are finalized. |
| Week 3 | Build accommodations for family members at a distance to genuinely participate. |
| Ongoing | Gather family feedback on their genuine experience of inclusion in decision-making. |
How the Monitor verifies this
| Method | What | Detail |
|---|---|---|
| DOCUMENT | Family participation review | Reviews documentation for genuine family participation in end-of-life planning, not just notification. |
| OBSERVE | Decision-making process observation | Observes an actual or simulated end-of-life planning conversation for genuine family inclusion. |
| ASK | Family experience interview | Asks a family member whether they felt genuinely included in decision-making, not just informed. |
Supervisor tips
- Ask a family member directly whether they felt genuinely included, not just informed. — This tests lived experience, not process compliance alone.
- Ask how a family member living at a distance would genuinely participate in a decision conversation. — This reveals whether inclusion is genuinely accessible, not dependent on physical presence.
Evidence base
[30] Genuine family participation in end-of-life care decision-making, distinct from notification of decisions already made, is established practice in palliative and end-of-life care literature for both improving decision quality and supporting family wellbeing through the experience.
ASF training courses on GMJ Academy →
Foundation courses A-00 to A-03 are live. Criterion-specific modules are being developed and will link here when published.