16.14 Care of the dying person

The principles outlined are not diagnosis specific; they can be used for any person who is considered to be in the last few hours or days of life.

Advance Care Planning (ACP) can help the patients and those close to them prepare for the future. It gives an opportunity to think about, talk about and write down preferences and priorities for future care, including how they want to receive care towards the end of life.

The Advanced Care Planning booklet can be downloaded from the NHS Devon CCG website, along with resources for healthcare workers around treatment escalation plans (TEP).

Managing the last few hours or days of life

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. In the absence of reversible causes of deterioration in people with advanced life-limiting disease the following signs and symptoms are indicative of death approaching:

  • Increased weakness and loss of mobility
  • Confusion
  • Increasing drowsiness
  • Decreased ability to take orally

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

Common symptoms in the last few days of life and suggested medications

Nausea and vomiting

  • regular anti-emetics via a syringe pump

Pain

  • opioids, adjuvant analgesics e.g. hyoscine butylbromide for colic, midazolam for muscle spasm, rectal NSAID for bone pain

Respiratory secretions

  • hyoscine butylbromide or glycopyrronium (both non-sedating) or hyoscine hydrobromide (sedating) via syringe pump

Agitated delirium and restlessness

  • think of potentially reversible causes for distress: consider urinary retention, constipation, hypercalcaemia, infection, fear
  • use benzodiazepines e.g. midazolam or rectal diazepam and/or sedative antipsychotics e.g. haloperidol or levomepromazine

Breathlessness

  • consider opioids and/or benzodiazepines via syringe pump

Checklist

  • Refer to your local Care of the Dying resources
  • review current medication and discontinue non-essentials, focusing on comfort care
  • prescribe when required subcutaneous medications
  • assess the need for a syringe pump to deliver necessary medication
  • establish the patient's wishes:
    • does the patient have an Advance Care Plan?
    • where is their preferred place of care?
  • consider a Treatment Escalation Plan and Resuscitation Decision Record (TEP form)
  • consider additional support the patient and family might need e.g. Hospice at Home, chaplaincy, carers, and sitters
  • explain your decision making and plan to the patient (if appropriate) and family or carers. Keep them informed
  • review the patient regularly
  • document your decisions, plan and discussions
  • update the Electronic Palliative Care Co-ordination System for out of hours information

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 since 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
  • substance misuse patients, particularly those on maintenance treatment, require a co-ordinated prescribing approach. Please seek advice from your local Specialist Palliative Care Team

Care of the dying resources

At the recommendation of an independent review in 2013, More Care, Less Pathway, the Liverpool Care Pathway for the Dying Patient (LCP) was withdrawn on the 14th July 2014. The Leadership Alliance for the Care of Dying People (a coalition of 21 national organisations set up to lead and provide a focus for improving the care of people who are dying) has subsequently developed national guidance to replace the LCP.

The guidance, One Chance to Get It Right, describes an approach for caring for dying people and focuses on achieving five Priorities for Care:

  • 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 dying person.

Based on this national guidance, resources have been developed to replace the LCP. Refer to your local Care of the Dying resources:

Please seek advice from your local Specialist Palliative Care Team

 

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