Standard 49: Advance Care Planning, Palliative Needs and Dignity

Why it matters. A person living with serious illness may want to talk about what matters to them in future care. Being offered that conversation, at the right time, lets their wishes guide the care.

Sample. Review the records of patients with serious or progressive illness admitted in the last 12 months, and their wishes records.

1. Patients with serious or progressive illness are identified and offered a conversation about future care.

Method. Check the sampled records for the identification and the offer.

Evidence to show. Advance care planning conversations (ADV-POL-001).

Pass when. Every sampled eligible patient has a recorded offer.

2. The conversation takes place at a time suited to the patient, with an interpreter where needed.

Method. Check the record for the time of the conversation and any interpreter used.

Evidence to show. Record of patient wishes for future care (ADV-FRM-001); interpreters and cultural mediators (HMG-POL-003, existing, reused).

Pass when. Every sampled conversation records the timing and any interpreter used.

3. The patient wishes are recorded, and shared where the patient agrees.

Method. Check the wishes record and the sharing decision for each sampled conversation.

Evidence to show. Record of patient wishes for future care (ADV-FRM-001).

Pass when. Every sampled conversation has a wishes record with the sharing decision.

Immediate fail (any one means the criterion is not met)

• A patient with advanced cancer is never asked about future care, and receives intensive treatment against their wishes.

Why it matters. An advance directive is a patient’s written choice about future treatment. It must be found when it is needed and followed where the law allows.

Sample. Review every advance directive found in the last 12 months, and each case where it was not followed.

1. An advance directive is found and recorded.

Method. Check the record of each sampled directive for when it was found and where it is kept.

Evidence to show. Advance directive register (ADV-REG-001).

Pass when. Every sampled directive is recorded with its location.

2. The directive is followed where permitted.

Method. Check the care record of each sampled directive against its instructions.

Evidence to show. Advance directive register (ADV-REG-001).

Pass when. Every sampled directive was followed, or the reason for not following it is recorded.

3. Where it could not be followed, the reason is recorded and the patient or representative is told.

Method. Check each case where the directive was not followed for the reason and the notification.

Evidence to show. Advance directive register (ADV-REG-001).

Pass when. Every case where the directive was not followed has a reason and a notification recorded.

Immediate fail (any one means the criterion is not met)

• A directive refusing resuscitation is not found, and the patient is resuscitated against it.

Why it matters. Palliative care is needed for many patients long before the end of life. Identifying those needs with a defined method, and treating the symptoms, relieves suffering early.

Sample. Review palliative need screening and symptom plans for a sample of patients with palliative needs in the last 6 months.

1. Palliative care needs are identified using a defined method.

Method. Check each sampled patient for the screening record.

Evidence to show. Palliative needs identification (PAL-SOP-001).

Pass when. Every sampled patient has a recorded screening result.

2. Symptoms are assessed and controlled.

Method. Check the symptom chart and the pain reassessment for each sampled patient over the stay.

Evidence to show. Symptom assessment and control (HSP-POL-001, existing, reused); symptom assessment chart (HSP-FRM-001, existing, reused); structured pain reassessment (MNP-SOP-002, existing, reused).

Pass when. Every sampled patient has symptom assessments at the set interval, and each symptom has a plan.

3. The patient and family are offered support.

Method. Check the family support record for each sampled patient.

Evidence to show. Family support and bereavement follow-up record (HSP-FRM-003, existing, reused).

Pass when. Every sampled patient and family has a recorded support offer.

Immediate fail (any one means the criterion is not met)

• A patient in severe pain is not reassessed for 48 hours, and the family is never offered support.

Why it matters. Patients who are dying or seriously ill still have privacy, dignity and their own beliefs. Respecting them in every interaction is part of care, not an extra.

Sample. Carry out dignity observations on each ward on several days, and review every report of a breach or refusal in the last 12 months.

1. Patients are treated with respect for privacy and dignity.

Method. Observe a sample of interactions on each ward and record the findings.

Evidence to show. Dignity observation and report record (DGN-FRM-001).

Pass when. No breach of privacy or dignity is found in the sampled interactions.

2. Cultural and religious needs are met.

Method. Check the record of cultural and religious needs for a sample of patients.

Evidence to show. Spiritual, cultural and psychological needs (HSP-SOP-002, existing, reused); spiritual, cultural and psychological needs record (HSP-FRM-004, existing, reused).

Pass when. Every sampled patient with a stated need has it recorded and met.

3. Care is not withheld or delayed because of identity, status or background.

Method. Check the reports and the complaints for any refusal or delay on those grounds.

Evidence to show. Dignity policy (DGN-POL-001); dignity observation and report record (DGN-FRM-001).

Pass when. No report of refusal or delay on those grounds is unreviewed or upheld.

Immediate fail (any one means the criterion is not met)

• A patient is refused a bed because of their nationality, and the refusal is never reported.

Why it matters. Caring for people who are seriously ill and their families is hard. Staff trained in communication and dignity handle those moments with more skill and less harm.

Sample. Review training records for all staff who deal with patients, for the last 2 years.

1. Staff receive training in communication, dignity and care for people with serious illness.

Method. Compare the training matrix with the staff list for the sample.

Evidence to show. Training matrix register (WRK-REG-001, existing, reused); palliative care training register (HSP-REG-001, existing, reused).

Pass when. Every sampled staff member has completed the training.

2. Training is recorded.

Method. Check the training register for each sampled course.

Evidence to show. Palliative care training register (HSP-REG-001, existing, reused).

Pass when. Every completed course is recorded with the date and the person.

3. Training is refreshed at the defined interval.

Method. Compare the date of each training with the refresh interval.

Evidence to show. Training matrix register (WRK-REG-001, existing, reused).

Pass when. Every sampled staff member is within the refresh interval.

Immediate fail (any one means the criterion is not met)

• A nurse has not had communication training in five years, and a serious illness is disclosed without a discussion.