Quality Indicator Repository

To determine the percentage of patients accessing specialist palliative care inpatient beds within seven days. This is the calculation of the number of patients who were admitted to a specialist palliative care inpatient bed within seven days of receipt of referral expressed as a percentage of the total number of patients admitted in the reporting month. The services submit the number of patients admitted within seven days and the total number of patients admitted in the reporting month, the percentage is calculated by the Business Intelligence Unit.

Wait time to admission is calculated in calendar days from the date of receipt of referral to the date of admission to the specialist palliative care inpatient unit. Each day (inclusive of weekends and bank holidays) that the patient waits to be admitted is counted, with wait times categorised as follows: 0-7 days; 8-14 days; 15-28 days; greater than 28 days. When a referred patient is offered a specialist palliative care bed but, due to external factors, is unable to be admitted, the count of the wait time is paused until the patient becomes available for admission. It is possible that the same patient can be referred twice to the service during the reporting month. Each episode of care is to be counted in the data return.

Did you feel that the professional carers gave you all the help and support you needed to care for your relative?

Did you feel supported by the professional carers immediately after the death of your relative? Was there a farewell- or staff appraisal interview that looked back on the care and treatment that was provided? Were the possibilities of after-care pointed out to you after the death of your relative?

The withholding of artificial (or parenteral) nutrition/fluid in the last 24 h is perceived as good clinical practice and as a relevant quality indicator for care of the dying in Sweden.

The end of life questionnaire item to measure this indictor is: Did the person receive parenteral fluids/nutrition during the last 24 hours of life? Yes No Don't know.

Did the professional carers ask how you were feeling?

Have your professional carers checked how you are feeling? Yes, regularly. Yes, once. No.

Symptoms and problems in the absent to mild range at phase end (i.e., anticipatory vs responsive care).

The percentage of all live discharges from hospice that were followed by hospitalisation within two days and followed by hospital readmission within two days of hospital discharge.

The percentage of all live discharges from hospice that were followed by hospitalisation within two days, and where the patient also died during the inpatient hospitalisation stay.

Cancer patients who started receiving palliative care and died within one week after start of palliative care.

This staff-reported summary measure includes 6 questions on the environment in which staff deliver end of life care: I feel able to raise a concern about end of life care within my hospital if I needed to; Staff work in partnership with the dying person and those important to them in planning and making decisions about their health, treatment and end of life care; Priority is given to the provision of an appropriate peaceful environment, that maximises privacy, for dying people and those important to them; Staff actively share information with each other about the individuals' end of life care needs; Deaths are actively reviewed, and action plans are implemented to improve end of life care; We have a culture that priorities care, compassion, respect and dignity as fundamental in all interactions with dying patients and those important to them.

Did your GP, the physician, or other professional carers inform you of the patient's care objectives? Did your GP, the physician, or other professional carers inform you of the patient's resuscitation status?

Have you ever talked to the patient about his or her wishes with regard to the care objectives?

Proportion of palliative care phases for people with life-limiting illnesses for which family or carer problems improved or remained at a low level after intervention. This measure is about ensuring that the carers of people with life-limiting illnesses get the support they need. Carers need support to help them provide care in a manner that also promotes their own health, well-being, and personal aspirations. The only national data currently available to describe carers' experience is through the experience of the person with a life-limiting illness. This may not accurately reflect how well supported a carer feels. The desired outcome for this measure is that more carers have the support they need, meaning the measure will increase. The computation is: (Numerator ÷ Denominator) x 100.

Percentage of patients who indicated that they always received clear and comprehensible and never contradictory information Do your professional carers explain things to you understandably? Do your professional carers give you conflicting information?

This summary indicator includes 6 questions on discussions with the nominated person on plan of care, notification of possible and imminent death, side effects of medication, hydration and nutrition: Is there documented evidence that the possibility that the patient may die had been discussed with the nominated person(s)?(aligned with the theme of 'Recognising the possibility of imminent death'); Is there documented evidence that the nominated person(s) was involved in discussing an individualised plan of care for the patient? (aligned with the theme of 'Recognising the possibility of imminent death'); Is there documented evidence that the nominated person(s) were notified that the patient was about to die? (aligned with the theme of 'Recognising the possibility of imminent death'); Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the nominated person(s)? (aligned with the theme of 'Individualised end of life care planning - Symptom management'); Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the nominated person(s)? (aligned with the theme of 'Individualised end of life care planning - Drinking and assisted hydration'); Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the nominated person(s)? ('aligned with the theme of 'Individualised end of life care planning - Eating and assisted nutrition').

Multi-item measure included as part of the CAHPS® Hospice Survey. All items have response options of "Never," "Sometimes," "Usually," and "Always." Survey questions included in this measure: "While your family member was in hospice care..." are P1: "How often did the hospice team keep you informed about when they would arrive to care for your family member?" P2: "How often did the hospice team explain things in a way that was easy to understand?" P3: "How often did the hospice team listen carefully to you when you talked with them about problems with your family member's hospice care?" P4: "How often did the hospice team keep you informed about your family member's condition?" P5: "How often did the hospice team listen carefully to you? P6: "How often did anyone from the hospice team give you confusing or contradictory information about your family member's condition or care?".

This summary indicator includes 5 questions based on discussions with the dying person on plan of care, the possibility that the patient may die, side effects of medication (including drowsiness), hydration and nutrition. The 5 questions are: Is there documented evidence that the possibility that the patient may die had been discussed with the patient? (aligned with the theme of 'Recognising the possibility of imminent death'); Is there documented evidence that the patient was involved in discussing the individualised plan of care? (aligned with the theme of 'Individualised end of life care planning - The patient'); Is there documented evidence that the possibility of drowsiness, if likely, as a result of prescribed medications, was discussed with the patient? (aligned with theme of 'Individualised end of life care planning - Symptom management'); Is there documented evidence that a discussion about the risks and benefits of hydration options was undertaken with the patient once the dying phase was recognised? (aligned with theme of 'Individualised end of life care planning - Drinking and assisted hydration'); Is there documented evidence that a discussion about the risks and benefits of nutrition options was undertaken with the patient once the dying phase was recognised? (aligned with theme of 'Individualised end of life care planning - Eating and assisted nutrition'). All questions include the response options: Yes; No but reason recorded and/or N/A; No and no reason recorded.

The indicator of companionship at death reflects the negative connotation of dying alone and a general fear of a bad death.

The end of life questionnaire item to measure this indicator is: Was anyone present at the time of death? Yes, close friend(s) or relative(s) Yes, close friend(s)/relative(s) and staff Yes, staff No Don't know.

Proportion of eligible patients referred to specialised palliative care who had contact.

The percentage of hospice service days that were provided at the Continuous Home Care (CHC) or General Inpatient (GIP) level of care. This is one of the ten claims-based indicators which comprise the Hospice Care Index (HCI) measure.

How long after admission or after palliative care was started, did the professional carers and family have a conversation about the patient's care preferences?

When considering end of life care and care homes, three groups can be identified: people who lived and died in a care home/permanent care home residents who died in a care home; people who lived elsewhere and died in a care home (temporary residents); people who live in a care home and died elsewhere (most commonly in hospital). Deaths in care homes who were temporary residents describes the number of people who lived elsewhere and died in a care home as a percentage of the number of people who died in a care home. Temporary admission to a care home may occur: when someone is unable to stay in their own home due to their terminal illness; following discharge from hospital during a terminal illness; when someone needs short term support recuperating from an illness.

Did the person receive information about the transition to end-of-life care, i.e. an individually tailored and informed conversation with a physician that is documented in the medical records about being in the final stage of life and about care being focused on quality of life and symptom relief?

Whether there was a documented decision by a physician to shift treatment and care to end-of-life care.

The end of life questionnaire item to measure this indictor is: Do the medical records include a documented decision by the physician responsible (in free text or as a classification code) to shift treatment/care to end-of-life care? Yes No Don't know.