The Gold Standard Framework 2016 - Proactive Identification Guidance

Review in progress

Disclaimer: The guidance contains helpful primary care information for management of referrals and up to date referral criteria. These guidelines are locality specific to best reflect local services. This guidance does not override or replace the individual responsibility of healthcare and social care professionals involved in the delivery of care to make informed professional judgements appropriate to the circumstances of the individual.

Scope

This guidance refers to:

  • Patients over 18 years of age
  • Patients with advancing malignant and non-malignant disease
  • A way of categorizing patients in terms of their likely prognosis and ensuring their care is well co-ordinated


Step 1 & 2 General Questions

Step 1 The Surprise Question

  • For patients with advanced disease or progressive life limiting conditions, would you be surprised if the patient were to die in the next year, months, weeks, days?
  • The answer to this question should be an intuitive one, pulling together a range of clinical, social and other factors that give a whole picture of deterioration. If you would not be surprised, then what measures might be taken to improve the patient's quality of life now and in preparation for possible further decline?

Step 2 General indicators of decline and increasing needs

  • General physical decline, increasing dependence and need for support.
  • Repeated unplanned hospital admissions.
  • Advanced disease — unstable, deteriorating, complex symptom burden.
  • Presence of significant multi-morbidities.
  • Decreasing activity — functional performance status declining (e.g. Barthel score) limited self-care, in bed or chair 50% of day and increasing dependence in most activities of daily living.
  • Decreasing response to treatments, decreasing reversibility.
  • Patient choice for no further active treatment and focus on quality of life.
  • Progressive weight loss (>10%) in past six months.
  • Sentinel Event e.g. serious fall, bereavement, transfer to nursing home.
  • Serum albumin <25
  • Considered eligible for DS1500 payment.

Click here for PDF version of GSF PCI 2016

Step 3: Clinical Indicators related to Trajectory 1 - Cancer

1. Cancer

  • Deteriorating performance status and functional ability due to metastatic cancer, multi-morbidities or not amenable to treatment — if spending more than 50% of time in bed/lying down, prognosis estimated in months.
  • Persistent symptoms despite optimal palliative oncology. More specific prognostic predictors for cancer are available.

Click here for PDF version of GSF PCI 2016

Step 3: Clinical Indicators related to Trajectory 2 - Organ Failure

Heart Disease
  • At least two of the indicators below:
    • Patient for whom the surprise question is applicable.
    • CHF NYHA Stage 3 or 4 with ongoing symptoms despite optimal HF therapy — shortness of breath at rest on minimal exertion.
    • Repeated admissions with heart failure — 3 admissions in 6 months or a single admission aged over 75 (50% 1 year mortality).
    • Difficult ongoing physical or psychological symptoms despite optimal tolerated therapy.
    • Additional features include hyponatraemia, high BP, declining renal function, anaemia, etc.
Chronic Obstructive Pulmonary Disease (COPD)
  • At least two of the indicators below:
    • Recurrent hospital admissions (at least 3 in last year due to COPD)
    • MRC grade 4/5 — shortness of breath after 100 metres on level
    • Disease assessed to be very severe (e.g. FEV1 <30% predicted), persistent symptoms despite optimal therapy, too unwell for surgery or pulm rehab.
    • Fulfils long term oxygen therapy criteria (Pa02<7.3kPa).
    • Required ITU/NIV during hospital admission.
    • Other factors e.g., right heart failure, anorexia, cachexia, >6 weeks steroids in preceding 6 months, requires palliative medication for breathlessness still smoking
Kidney Disease
  • Stage 4 or 5 Chronic Kidney Disease (CKD) whose condition is deteriorating with at least two of the indicators below:
    • Patient for whom the surprise question is applicable.
    • Repeated unplanned admissions (more than 3/year).
    • Patients with poor tolerance of dialysis with change of modality.
    • Patients choosing the `no dialysis' option (conservative), dialysis withdrawal or not opting for dialysis if transplant has failed.
    • Difficult physical or psychological symptoms that have not responded to specific treatments.
    • Symptomatic Renal Failure in patients who have chosen not to dialyse — nausea and vomiting, anorexia, pruritus, reduced functional status, intractable fluid overload.
Liver Disease
  • Hepatocellular carcinoma.
  • Liver transplant contra indicated.
  • Advanced cirrhosis with complications including:
  • Refractory ascites
  • Encephalopathy
  • Other adverse factors including malnutrition, severe comorbidities, Hepatorenal syndrome
  • Bacterial infection, recurrent bleeds, raised INR. hyponatraemia, unless they are a candidate for liver transplantation or amenable to treatment of underlying condition.
General Neurological Diseases
  • Progressive deterioration in physical and/or cognitive function despite optimal therapy.
  • Symptoms which are complex and too difficult to control.
  • Swallowing problems (dysphagia) leading to recurrent aspiration pneumonia, sepsis, breathlessness or respiratory failure.
  • Speech problems: increasing difficulty in communications and progressive dysphasia.
Parkinson's Disease
  • Drug treatment less effective or increasingly complex regime of drug treatments.
  • Reduced independence, needs ADL help.
  • The condition is less well controlled with increasing "off" periods.
  • Dyskinesias, mobility problems and falls.
  • Psychiatric signs (depression, anxiety, hallucinations, psychosis). Similar pattern to frailty — see below
Motor Neurone Disease
  • Marked rapid decline in physical status
  • First episode of aspirational pneumonia. Increased cognittve difficulties.
  • Weight Loss. • Significant complex symptoms and medical complicalions.
  • Low vital capacity (below 70% predicted spIrometry or initiation of NIV)
  • Mobility problems and falls.
  • Communication difficulties.
Multiple Sclerosis
  • Significant complex symptoms and medical complications.
  • Dysphagia - poor nutritional status. communwitin difficulties e.g., Dysarthrla + fatigue.
  • Cognitive impairment notably the demise of dementia.

Click here for PDF version of GSF PCI 2016

Step 3: Clinical Indicators related to Trajectory 3 - Frailty, Dementia & Multi-morbidity

Frailty
  • For older people with complexity and multiple comorbidities, the surprise question must triangulate with a tier of indicators, e.g. through Comprehensive Geriatric Assessment (CGA).
    • Multiple morbidities.
    • Deteriorating performance score.
    • Weakness, weight loss exhaustion.
    • Slow Walking Speed takes more than 5 seconds to walk 4m.
    • TUGT — time to stand up from chair, walk 3 m, turn and walk back.
    • PRISMA — at least 3 of the following:
  • Aged over 85, Male, Any health problems that limit activity?, Do you need someone to help you on a regular basis?, Do you have health problems that cause require you to stay at home?, In case of need can you count on someone close to you?, Do you regularly
  • use a stick, walker or wheelchair to get about?
Dementia
  • Identification of moderate/severe stage dementia using a validated staging tool e.g., Functional Assessment Staging has utility in identifying the final year of life in dementia.
  • (BGS) Triggers to consider that indicate that someone is entering a later stage are:
    • Unable to walk without assistance and
    • Urinary and faecal incontinence, and
    • No consistently meaningful conversation and
    • Unable to do Activities of Daily Living (ADL)
    • Barthel score >3
  • Plus any of the following: Weight loss, Urinary tract Infection, Severe pressures sores - stage three or four, Recurrent fever, Reduced oral intake, Aspiration pneumonia. NB Advance Care Planning discussions should be started early at diagnosis.
Stroke
  • Use of validated scale such as NIHSS recommended.
  • Persistent vegetative, minimal conscious state or dense paralysis.
  • Medical complications, or lack of improvement within 3 months of onset.
  • Cognitive impairment / Post-stroke dementia.
  • Other factors e.g. old age, male, heart disease, stroke sub-type, hyperglycaemia

Click here for PDF version of GSF PCI 2016

Supportive and Palliative Care Guide

Referral

Referral Criteria

Wakefield CCG
  • Eligibility for referral to specialist palliative care services (including inpatient, community, day hospice or outpatient service provision) is based on patient need not diagnosis:
    • The patient has active, progressive and usually advanced disease for which the prognosis is limited (although this may be several years) and the focus of care is quality of life.
    • The patient has unresolved complex needs that cannot be met by the caring team. These needs may be physical, psychological, social and /or spiritual. Examples may include complicated symptoms, difficult family situations, or ethical issues regarding treatment decisions.
  • Patients who meet the above criteria may be admitted to any part of the specialist palliative care service as required
  • An eConsultation request can also be sent via SystmOne
  • See palliative care contact details and resources for further information
North Kirklees
  • Common eligibility criteria were agreed in 2000 by all providers of SPC (specialist palliative care) working in Calderdale and Kirklees in order to ensure equity of access. The criteria reflects those adopted by other SPC services across the country and was incorporated into the new service agreement with Kirkwood on April 2015.
  • There are three elements to the common eligibility criteria:
    • Patients should have active, progressive and potentially life-threatening illness
    • Patients should have unresolved, complex needs that cannot be met by the current caring team, or it is anticipated that the patient will develop such needs in the near future. These needs may be psychological, social, spiritual or physical
    • Patients must have been recently assessed by a member of a SPC team
  • See palliative care contact details for further information

Referral Forms

Wakefield CCG
North Kirklees CCG

Assurance & Governance

  • This guidance was developed on: 02.2018
  • This guidance was ratified by: The OSCAR Assurance Group
  • Date ratified: 03.2018
  • Publication Date: 03.2018
  • Review Date: 02.2020
  • Ref No: PL11 - 02.2018
Any feedback or suggestions to improve this guidance should be sent to: oscaradmin@this.nhs.uk
Only the electronic version is maintained, once printed this is no longer a controlled document

 

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