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Identifying Palliative Care Needs

Key points

  • Consider the palliative care needs of all patients with advanced, life-limiting illnesses, such as:
    • Metastatic cancer
    • Any diagnosis of end-stage organ failure (eg, congestive heart failure, chronic obstructive pulmonary disease, chronic renal failure) with increasing disability, frequent hospitalisation, and/or decreasing benefit from therapies
    • Advanced degenerative neurological conditions.
  • A palliative approach should be considered for any patient when you would not be surprised if they died within the next twelve months, ie, the 'surprise' question.
  • Consider the need for, and timing of, advance care planning conversations, recognising that:
    • Many patients are waiting for their doctor to raise this topic, and the setting of a GP consultation is an appropriate opportunity
    • Many patients appreciate the willingness of their doctor to discuss their concerns and values, with the goal of improving their quality of life
    • For many patients advance care planning is not a single set of decisions, but an ongoing conversation, which needs to be appropriately documented and reviewed
    • It is important for the patient to identify a substitute decision maker, and to talk to that person about their wishes and concerns.​
  • Discuss and review the goals of care for current medical conditions, recognising that there are common transition points that will affect these goals of care, including:
    • Diagnosis of a new condition, or worsening of a pre-existing condition
    • Burden of treatment starting to outweigh benefits
    • Increase in dependency, decreasing performance state
    • Increase in suffering and distress.
  • Where symptoms or distress do not respond to initial management, consider early referral to specialist palliative care services.
  • Be aware that referral for specialist palliative care is not limited to a particular diagnosis or life expectancy, but to the patient’s level of need.
  • Where carer burden or distress is high, or there are complex psychosocial needs, consider early referral to specialist palliative care service.

Tools and Resources for professionals

The 'surprise' question - Identification of patient approaching the end-of-life
RADPAC - Identification of patient requiring palliative care approach
PEPSI COLA - Holistic patient assessment tool
The ‘surprise’ question - Identification of patient approaching the end-of-life
Gold Standards Framework, Prognostic Indicator Guidance (PIG)

The 'surprise question': For patients with advanced disease of progressive life-limiting conditions - Would you be surprised if the patient were to die in the next few months, weeks, days?

The answer to this question should be an intuitive one, pulling together a range of clinical, co-morbidity, 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? 
From: Gold Standards Framework, NHS
Ref: Thomas K. Prognostic Indicator Guidance (PIG). 4th ed. The Gold Standards Framework Centre in End of Life Care. 2011 Oct [cited 2014 Sep 29]. (642kb pdf)
RADPAC - Identification of patient requiring palliative care approach
The RADboud indicators for PAlliative Care needs (RADPAC)

Congestive heart failure
  1. The patient has severe limitations, experiences symptoms even while at rest; mostly bedbound patients (NYHAa IV)
  2. There are frequent hospital admissions (>3 per year)
  3. The patient has frequent exacerbations of severe heart failure (>3 per year)
  4. The patient is moderately disabled; dependent; requires considerable assistance and frequent care 
(Karnofsky score ≤50%)         
  5. The patient’s weight increases and fails to respond to increased dose of diuretics
  6. A general deterioration of the clinical situation (oedema, orthopnoea, nocturia, dyspnoea)
  7. The patient mentions ‘end-of-life approaching’
Chronic obstructive pulmonary disease
  1. The patient is moderately disabled; dependent; requires considerable assistance and frequent care (Karnofsky score ≤50%)
  2. The patient has substantial weight loss (±10% loss of body weight in 6 months)
  3. The presence of congestive heart failure
  4. The patient has orthopnoea
  5. The patient mentions ‘end of life approaching’
  6. There are objective signs of serious dyspnoea (shortness of breath, dyspnoea with speaking, use of respiratory assistant muscles and orthopnoea)
  1. Patient has a primary tumour with a poor prognosis
  2. Patient is moderately disabled; dependent; requires considerable assistance and frequent care (Karnofsky score ≤50%)
  3. There is a progressive decline in physical functioning
  4. The patient is progressively bedridden
  5. The patient has a diminished food intake
  6. The presence of progressive weight loss
  7. The presence of the anorexia-cachexia syndrome (lack of appetite, general weakness, emaciating, muscular atrophy)
  8. The patient has a diminished ‘drive to live’
aNYHA = New York Heart Association. 
Ref: Thoonsen B, Engels Y, van Rijswijk E, Verhagen S, van Weel C, Groot M, et al. Early identification of palliative care patients in general practice: development of RADboud indicators for PAlliative Care Needs (RADPAC). Br J Gen Practice. 2012 Sep;62(602):e625-31.
PEPSI COLA - Holistic patient assessment tool
Gold Standards Framework - PEPSI COLA Aide Memoire

The aide memoire is a tool to support practitioners carrying out assessments and can be used with assessment tools currently in use. It promotes communication and support and provides a framework to consider patients’ holistic needs.
 The aide memoire encompasses all the domains of a holistic assessment through the acronym PEPSI COLA:

P - Physical
E - Emotional
P - Personal
S - Social support
I - Information and communication
C - Control and autonomy
O - Out of Hours
L - Living with your illness
A - Aftercare
In each domain the tool identifies:
  • Potential anticipated patient issues and concerns
  • Cue questions to ask patients and carers
  • And resources for professionals to signpost to. 
Key principles of carrying out a holistic assessment are that:
    • The assessment should be patient ‘concerns-led’
    • Helping patients to assess their own needs should be central to the process
    • Patient consent is necessary to the assessment process
    • Professionals undertaking assessment should have reached an agreed level of competency in key aspects of assessment
    • Patient preferences for communicating with particular professionals, their family and friends, should be taken into account
From: Gold Standards Framework, NHS
Ref: Thomas K. Holistic Patient Assessment - Pepsi Cola Aide Memoire. The Gold Standards Framework Centre in End of Life Care. 2009. (128kb pdf)

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Last updated 25 May 2015