Care of the Dying Person Care Pathway

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 who are felt to be in the final days of life, for whom all reversible cause have been excluded.

This guidance does not cover:

  • Patients under 18 years of age

Assessment

Assessment

  • Recognising that a person is coming to the end of their life can be difficult. The clearest signs of approaching death are picked up by day to day assessment of deterioration, recorded through the Electronic Palliative Care Co-ordination system (EPaCCs) noting a deterioration in function. In the absence of reversible causes of deterioration in people with advanced life­limiting disease the following signs and symptoms are indicative of death approaching:
    • Increased weakness and loss of mobility
    • Confusion
    • Increasing drowsiness for extended periods
    • Loss of interest in food and drink
    • Too weak to swallow medication
  • This assessment can be supported by tools such as the Australian Karnofsky performance Score and the Proactive Identification Guidance (PIG), both of which are available on EPaCCs.

Management

Goals for the last few days of life

  • To use an approach, in line with national guidance, outlining five priorities of care for dying people
    • Recognising the dying phase
    • Communicating clearly and sensitively with the dying person and those important to them
    • Involving the person in decisions about treatment and care to the extent that the dying person wants
    • Supporting the needs of the family
    • Developing an individual plan of care for the person
  • To ensure the person's comfort physically, emotionally and spiritually To ensure the person dies peacefully and with dignity
  • By care and support given to the dying patient and their carers, make the memory of the dying process as positive as possible

Checklist

  • Refer to your local Care of the Dying resources which are available from the MYHT graphics department and on hospital wards.
    • Mid Yorkshire Hospital Trust End of life care plan
    • PF3451e (includes symptom management guidance)
    • Integrated Care of the Dying document (i-codd) for Kirklees patients
  • Establish the patient's wishes:
    • Does the patient have an Advance Care Plan? Where is their preferred place of care?
  • Document a resuscitation decision, using a transferable regional DNACPR form. Always try and discuss this with the patient (if appropriate), family and carers. It may be beneficial to provide the What happens if my heart stops? leaflet to support this discussion
  • Explain your decision making and plan to the patient (if appropriate) and family or carers. Keep them informed
  • If the patient does not have capacity, clinical decisions must be made in the patients best interests in line with the Mental Capacity Act. Family, carers and other healthcare professional should be consulted.
  • Review the patient regularly
  • Document your decisions, plan and discussions
  • Review current medication and discontinue non­ essentials, focusing on comfort Prescribe 'as required' subcutaneous medications. They should be prescribed on the regional Community Palliative care chart, which incorporates both anticipatory medication and syringe pump prescription.
    • If opioid naïve Diamorphine 2.5 - 5mg PRN (5 ampoules of 5mg/ml)
    • If already on opioids, 1/6th of the 24 hourly SC opioid dose
    • Midazolam 2.5 – 5mg PRN (10 ampoules of 10mg/2ml)
    • Hyoscine Butylbromide 20mg PRN (10 ampoules of 20mg/ml)
    • Haloperidol 0.5 – 3mg PRN (10 ampoules of 5mg/ml)
    • Water for injection (20x 10ml ampoules)
  • Assess the need for a syringe pump to deliver necessary medication
  • Update the Electronic Palliative Care Co­ordination System (EPaCCs) for out of hours information and advance care planning decisions
  • Complete the Palliative Care OOH handover form and fax to Local Care Direct (number on the form)
  • Fast Track/Continuing Care funding forms should be signed for patients wishing to be cared for in the home or nursing home setting.
  • Consider additional support the patient and family might need e.g. carers, night sitters, community nursing, community palliative care team, chaplaincy

General tips for prescribing

  • The subcutaneous route is preferable in palliative care patients rather than intramuscular. Although some of the drugs listed are not licensed to be given subcutaneously, they are all commonly used by this route in palliative care.
  • The rectal route can be useful for some patients
  • Transdermal opioid patches should not be started in the last few days of life, as it takes too long to titrate against a patient's pain. If the patient is already established on a patch it may be appropriate to continue with it and add in additional medications via the syringe pump
  • If symptoms are not controlled on usual dose range, please seek advice from your local Specialist Palliative Care Team
  • For patients dying with renal failure, alternative medication regimes may be required. Please contact your local Specialist Palliative Care Team
  • Substance misuse patients, particularly those on maintenance treatment, require a co­ordinated prescribing approach. Please seek advice from your local Specialist Palliative Care Team

Medication for common symptoms in the last few days of life

Pain
  • If opioid naïve diamorphine 2.5 - 5mg PRN would be an appropriate starting dose
  • If two or more doses are required within 24 hours consider starting a syringe driver, usually 10mg Diamorphine over 24 hours if opioid naive
  • For those already on opioids consider converting the PO opioids into a syringe driver. PRN dose would be 1/6th of the 24 hourly SC dose.
  • Consider adjuvant analgesics, such as hyoscine butylbromide for colic, midazolam for muscle spasm
  • Seek advice from the Specialist Palliative Care Team if the patient has renal failure
Respiratory secretions
  • Explain to relatives or carers that this is usually caused by movement of secretions in the upper airway of patients who are too weak to cough. It is unlikely to be causing the patient any distress.
  • Repositioning of the patient may be the most effective management
  • Hyoscine butylbromide 20mg PRN or via syringe pump is the 1st line choice
  • Alternatives include Glycopyrronium 400 micrograms or Hyoscine Hydrobromide 400 micrograms (may be sedating)
Nausea and vomiting
  • Haloperidol 1.5 – 5mg PRN as a 1st line for nausea.
  • Other options would include Levomepromazine 6.25 – 12.5mg PRN, Metoclopramide
  • See Nausea and Vomiting for further detail
Agitated delirium and restlessness
  • Think of potentially reversible causes for distress: consider urinary retention, pain, constipation, hallucinations, respiratory distress, psychological distress
  • If there are no reversible causes then midazolam 2.5mg - 5mg is the first line medication.
  • After non-pharmacological measures, haloperidol 1.5 - 5mg may be indicated for delirium
  • If midazolam alone is not effective, consider adding haloperidol or levomepromazine.
  • See Confusion and delirium for more detail
Breathlessness
  • Opioids would be the first line medication, if opioid naïve diamorphine 2.5 - 5mg PRN
  • If two or more doses are required within 24 hours consider starting a syringe driver, usually 5-10mg Diamorphine over 24 hours if opioid naive
  • For those already on opioids, PRN dose would be 1/6th of the 24 hourly SC dose.
  • Second line medication would be Midazolam 2.5-5mg PRN
  • See Breathlessness for more detail
Syringe pump principles
  • A Syringe pump (or driver) is a way of administering medications continuously, via the subcutaneous route, when the patient is unable to swallow or absorb oral drugs.
  • This may be due to weakness or unconsciousness, persistent vomiting, dysphagia, intestinal obstruction or mouth, throat and oesophageal lesions.
  • They may be used at the end of life, as well as for symptom control at earlier stages of the disease trajectory.
  • The rationale for use should be explained to patients and relatives.
  • The McKinley T34 syringe pump is now widely used across the region. Please refer to your local syringe driver policy:
  • Recommended sites for the insertion of the subcutaneous cannula are; the anterior chest wall, upper arm, abdominal wall and thighs.
  • Prescription of a syringe driver
    • Dosages should be calculated based on the patients previous requirement.
    • They should prescribed on the regional Community palliative care chart, which incorporates both syringe pump and anticipatory medication prescription
    • Following commencement of a syringe pump it will take several hours for the drugs to reach therapeutic levels. Consider giving a STAT dose of medication, equivalent to the normal PRN dose, to ensure symptoms are managed during this period
    • Inadequate pain control is not an indication for a syringe pump, unless there is a concern the medication is not being absorbed orally or there is nausea and vomiting
    • Syringe pumps require regular monitoring
    • If using more than one drug in a syringe pump, check compatibilities with the current Palliative Care Formulary, pharmacy or local Specialist Palliative Care Team
    • Remember to prescribe subcutaneous PRN medication alongside the syringe driver.
      • Use medication and doses as described above
      • Ensure opioids are prescribed at 1/6th of the total daily dose.
    • If symptoms are not controlled contact your local specialist palliative care team

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 and resources for further information

Referral Forms

Wakefield CCG
North Kirklees CCG

Supporting Information

Shared Decision Making

  • Patients have a right to make decisions about their care and should be fully informed about the options they face. They should be provided with reliable evidence-based information on the likely benefits and harms of interventions or actions, including any uncertainties and risks, eliciting their preferences and supporting implementation.

Patient information/Public Health/Self Care

Evidence/Additional Information

Assurance & Governance

  • This guidance was developed on: 07.2017
  • This guidance was ratified by: The OSCAR Assurance Group
  • Date ratified: 08.2017
  • Publication Date: 08.2017
  • Updated: 02.2018
  • Review Date: 07.2019
  • Ref No: PL1 - 07.2017
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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