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Terminal Care

What we know

Terminal care usually refers to the last few days to weeks of life when a person is irreversibly dying. Recognising that death is imminent can be difficult but it is important as it can allow a dying person, his/her family and carers to adjust priorities, achieve certain goals, and plan appropriate end-of-life care. Management of the last days of life can be supported by discussions that have occurred previously. Best practice in end-of-life care includes the timely provision of information; provision of comfort through the management of physical, emotional and cognitive symptoms; and addressing spirituality, grief and bereavement. Appropriate end-of-life care may include consideration of a preferred place of care and preferred place of death; these may not be the same. Increasingly, older people are living longer and with multiple chronic illnesses. Comorbidities and frailty make prognostics difficult but highlight the importance of care planning well in advance of the terminal phase.

What can I do?

Most people fear the dying process and do not know what to expect; it is helpful to explain it to them in simple terms.

Use the SPICT Tool to identify people whose health is deteriorating so that care can be planned proactively. SPICT4ALL can also be used by people who prefer less ‘medical’ language.

To identify patients at risk of deteriorating and dying you can use this checklist from End of Life Essentials (141kb pdf).

Use tools such as Vital Talk to help initiate early the conversations with the person and their around preparing for death.

Regularly observe and monitor a patient for signs of distress or discomfort that may be related to pain or other symptoms.

Encourage family members and carers to participate in care as appropriate and if they wish to do so; providing care in this way can be beneficial and help them feel involved.

Make sure it is clear to the family when a resident or client is nearing death. If families are not aware that their family member is expected to die soon, they may miss the chance to say goodbye.

In a Residential Aged Care facility, use the Residential aged care end-of-life care pathway (RAC EoLCP) as a guide for good quality end-of-life (terminal) care.

Use the information and guidance in 'When your patient is dying' in the palliAGEDgp app and 'Terminal Care Planning' in the palliAGEDnurse app.

Use Symptoms and Medicines to guide evidence-based care of older people in the last days of their life.

People in your care and their family and carers may find useful: How should care be delivered at the end of life? information for patients and their families and carers (1.02MB pdf).

Check that advance care documents are available. Advance care planning information can be uploaded to My Health Record.

Providing a homely or personalised physical environment may be of great comfort particularly if it allows family or friends to stay close to an older person receiving palliative care.

Remember that people are different with different cultural and spiritual needs.

 

What can I learn?

Useful information and resources in palliAGED apps for nurses and GPs are available in Australia as apps or world-wide as an online resource.

Read:

Check out these videos:

Complete Module 3 - Recognising the End of Life from End-of-Life Essentials for doctors, nurses and allied health professionals

Complete the PCC4U online learning modules to learn about Support for people at the end stages of life.
 

 

What can my organisation do?

Encourage staff to be aware of clients’ or residents’ preferences.

Residential aged care facilities can implement the Residential aged care end-of-life care pathway (RAC EoLCP) that guides the provision of good quality end-of-life (terminal) care.

Providing a homely or personalised physical environment may be of great comfort particularly if it allows family or friends to stay close to a resident receiving palliative care.

Encourage staff to use the resources:

In the organisation’s processes and procedures, ensure that, for each resident and client,

  • a copy of the Advance Care Plan (ACP) or Advance Care Directive (ACD) is readily available in notes or records; an electronic version may assist accessibility
  • the contact details are up to date for the next-of-kin, the substitute decision-maker and the person to contact in case of an emergency; these may not be the same person.

Understand if a nearby hospital has a palliative of end-of-life strategy or approach. As an example, you can look at the Care Plan for the Last Days of Life (835kb pdf) (developed by Government of South Australia, SA Health).

Develop a kit of information for residents and clients using information from What to do when someone dies or What to do after someone dies.

Refer staff to CarerHelp factsheets on Death & Dying including what to do following a death.

When providing home-based support to carers of people with advanced dementia who are dying, best practice includes

  • regular face-to-face contact for help with care (medication, equipment, advice) as much as possible by the same staff
  • telephone support
  • access to written information for carers that guides their care
  • attention given to the carer who may feel lonely and isolated
  • access to debriefing after a death (as needed) for carers as their role may be demanding in a highly emotive time and on not always taken by choice.

Page updated 06 July 2021