Manage Dying
The last days of life are the hours, days or, occasionally, weeks when a person’s death is imminent. This is sometimes referred to as the period when a person is actively dying.
Good end-of-life care ensures that the older person’s physical, psychological, spiritual and social needs are met. To do this it is important to recognise signs of imminent death, as this:
- can ensure that signs of distress and discomfort are addressed for the older person
- can enable the person to spend time with the people of their choosing
- supports the wellbeing of family and carers.
All team members need to be able to recognise that an older person is imminently dying, and provide effective care and support.
To manage dying responsively and effectively, clinicians and care workers should consider these important points:
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How to recognise dying
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Available resources to guide care
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Managing symptoms
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Conversations about end of life
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After the older person has died
Signs and symptoms of dying may differ between individuals. There are some common indicators that a person may be in the last days of life. These include:
- experiencing rapid day-to-day deterioration that is not reversible
- requiring more frequent interventions
- becoming semi-conscious with lapses into unconsciousness
- increasing loss of ability to swallow
- refusing or unable to take food, fluids or oral medications
- irreversible weight loss
- the occurrence of an acute event that requires revision of treatment goals
- profound weakness
- changes in breathing patterns.
Care workers should report any changes or concerns to the clinical team.
Clinicians should be responsive in addressing identified changes as needed.
palliAGED offer a short clip for workers in residential care on Recognising the signs of dying. palliAGED also have Practice Tips on the signs of imminent death for Nurses (240kb pdf) and Careworkers (336kb pdf).
Check whether your organisation uses specific resources to assist you to manage dying. These may include an end-of-life pathway, palliative care planning, or case conferences.
A care pathway is based on evidence and guidelines, and is different from an older person’s care plan. A care pathway represents the ideal way to manage a specific problem. While a care plan is based on the individual.
Using an end-of-life care pathway or terminal care plan may help to guide the care required for older people in the last days or weeks of life. For instance, The Residential Aged Care End of Life Care Pathway (RAC EoLCP) by Queensland Health includes evidence and consensus-based best practice clinical management and care coordination for dying older people. This Pathway includes a Comfort Care Chart that will assist in recording and responding to a person’s needs and provide appropriate care in the last days of life. The RAC EoLCP is free to use under a Creative Commons licence. Users have to agree to the terms of the licence before gaining access.
palliAGED has Practice Tips on End-of-Life Care Pathways for Nurses (229kb pdf) and Careworkers (318kb pdf).
Review the older person’s advance care plan or Advance Care Directive to ensure you are aware of their care preferences. This should also help to avoid unnecessary transfers to hospital, where this does not align with the older person’s preferences.
Include substitute decision-makers and family in related conversations about care and updates about the condition of the older person. Offer support for family and carers as needed. For guidance on identifying and managing common symptoms, refer to the Assess and Provide Palliative Care sections of this Toolkit. In the last days of life, pay particular attention to:
Wound and Pressure Care
Physiological changes and immobility affecting skin and soft tissue can occur during the older person’s dying stage. Risk factors, signs and symptoms associated with skin changes at the end of life include:
- loss of appetite
- weight loss
- cachexia
- low haemoglobin
- dehydration.
These changes can impact the skin and soft tissues leading to skin breakdown and pain. [1,2]
Use pressure-relieving equipment to prevent shearing. Equipment may include heel protectors or a pressure-relieving mattress.
palliAGED has Practice Tips on Skin and Wound Care for Nurses (pdf 233kb) and Careworkers (pdf 336kb).
Oral Care
- Oral care must be provided regularly and as tolerated by the older person. Regular oral care keeps the mouth, teeth, gums and lips clean, moist and comfortable. Use a soft toothbrush or oral sponge with a low foaming toothpaste or other products, and a small amount of water.
- Keep the lips moist using a water-based lip balm. Assess the mouth for any changes. Ensure that dentures and partial plates are risk assessed for choking, removed and cleaned thoroughly.
- palliAGED has a short video on how to provide mouth care. For a longer video watch the NHS Carrying Out Mouth Care EOL video.
Eye Care
Bowel and Bladder Care
- To manage urinary and/or bladder continence develop a continence management program. This includes the use of pH neutral skin cleansers, skin emollients or barrier products, and gentle hygiene techniques.
- Consider indwelling catheter for urinary retention if identified, or to prevent pain and excoriation from incontinence.
- Marie Curie has information on continence management in palliative care.
- Constipation is a common symptom at the end of life often due to medications, reduced mobility and reduced appetite.palliAGED has Practice Tips on constipation for Nurses (230kb pdf) and Careworkers (320kb pdf).
Managing Secretions
- Secretions may occur at the end of life. These include noisy breathing, wet respirations, and terminal secretions.
- Position the older person to encourage postural drainage.
- Suction the oral cavity.
- Provide explanation and support to family and friends.
- Consider anticholinergic agents. Note that effectiveness varies. [3]
Delirium
Note that the Residential Aged Care End of Life Care Pathway (RAC EoLCP) by Queensland Health includes a Comfort Care Chart. This will assist in managing and providing appropriate care in the last days of life.
Conversations about end of life, dying, and what matters most to older people are important. However, these talks can be difficult and confronting.
Talking about dying can:
- Help the older person as it can inform and improve their care.
- Help family and carers to understand what is happening. It also allows them to express concerns and be involved.
- Assist you to tailor care to the person’s changing needs, unique preferences, beliefs, and values.
Consider these key issues before talking with someone about dying and end of life:
- Does the person want to talk about these issues at this point in time? Always check with an older person and their family and carers if this is ok. Not everyone talks about death and dying in the same way, or is ready to talk at a particular time. Family members and carers may have a different need or desire for information than the older person receiving care. Consider that some people may also wish to speak with a pastoral care worker, chaplain, or counsellor about dying and end of life.
- How can you tailor your approach to someone’s needs? Pay attention to:
- Non-verbal cues – Examples such as:
- Is eye contact helpful for this person?
- How can you position your body to that ensure the person feels safe and heard? This may mean moving to be at their height, in front of, or next to the person.
- Where is a safe and supportive place to have this conversation?
- Verbal cues – For instance, what tone, volume and pace of your speech that will suit this person?
- Cultural and spiritual cues - May include: What do you know about their views and beliefs about dying and end of life? How might this shape the way you care and who may need to be involved in these conversations? For instance, does this person have time-sensitive preferences or spiritual practices that need to be attended to at specific times?
- The e-REDMAP Framework provides a 6-step guide to future care planning conversations. The e-REDMAP Framework REDMAP stands for: Ready, Expect, Diagnosis, Matters, Actions and Plan. There is an e-REDMAP version on care planning in the last days of life to assist in guiding conversations during this time.
- How can you show you recognise and support difficult feelings that can arise during these conversations?
- Listen actively and without judgement. Normalise the person’s feelings and thoughts.
- Recognise that it is more difficult to absorb information during times of transition and stress, such as when someone is dying. Be aware that you may need to repeat information with older people and their families at this time. Reassure them that discussions about end of life can be revisited as needed.
There are legal regulations and laws related to death certification and coronial procedures.
- Death is to be verified. Depending on which state or territory you are in, this may be done by a nurse or doctor.
- Certification of death must occur, usually by the General Practitioner. In some instances, deaths must be reported to the coroner.
- Team members may also assist by supporting the family to contact their chosen funeral director and arrange for transfer of the deceased person into their care.
palliAGED has Practice Tips on After-Death Choices for Nurses (214kb pdf) and Careworkers (332kb pdf).
- The ELDAC Linkages Toolkit contains useful information on forming or maintaining partnerships with external organisations.
- The ELDAC Primary Care Toolkit has resources to assist primary care providers and their team members. The toolkit may assist in how to better engage with them.
The specific role of clinicians
Holistic assessment and management of symptoms is critical for older people in the last days and weeks of life.
Symptom management often involves a combination of approaches including medications and non-medical approaches. Key principles to consider are the cause of symptoms, treatment benefits and burdens, the older person’s illness stage, overall care goals, and their preferences and values.
It is essential to provide opportunities for the older person and their family and carers to talk about what is happening. This includes talking about aspects of care, such as requesting or declining treatment. These discussions can support understanding and offer space for people to express concerns. In some instances, consultation with a specialist palliative care service may be required.
In addition to the issues above, clinicians in residential aged care need to be informed about:
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End-of-Life medications
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Syringe drivers
Ensure medication (including anticipatory medication) to support management of pain and symptoms is prescribed, reviewed and available.
- palliAGED has information on what team members can do to reduce care burden. These are treatments/care that no longer bring benefits, and which may unpleasant for the person.
- caring@home offers the palliMEDS app. It provides clinicians with prescription information for the most useful palliative care medicines in the management of terminal symptoms. The app also includes an opioid calculator tool.
- The ELDAC End of Life Law Toolkit has a factsheet on Legal Protection for Administering Pain and Symptom Relief.
Syringe drivers are commonly used for symptom management. They provide continuous medications subcutaneously when a person is no longer able to swallow.
- More information and resources about syringe drivers can be found at the CareSearch webpage on syringe drivers.
- palliAGED also has information on syringe drivers.
- Gain a better understanding about delivering palliative and end-of-life care by listening to the ELDAC podcast series 'The What to do, When and How'.
- Reflect on your own values, beliefs and preferences about death and dying. This will likely enable you to be more present and comfortable when exploring these issues with someone who is dying, their family and carers.
- Watch the ELDAC Manage Dying educational video to help you to recognise deteriorating health and identify changes when death is near. There is information on implementing The Residential Aged Care End of Life Care Pathway (RAC EoLCP) by Queensland Health.
- There is a training video that should be viewed by all team members who use The Residential Aged Care End of Life Care Pathway (RAC EoLCP) by Queensland Health.
- Watch the palliAGED short videos on various aspects of managing dying and end-of-life care. There is a video on Recognising the signs of dying.
- Watch the Agency of Clinical Innovations clip on Medications at the end of life. This covers medications that may be needed in the last days of life and how these can be delivered, such as via syringe drivers.
- Self-care is important when you are looking after people who are dying. This is especially true for those older people you will have known for some time. The ELDAC Self-Care Room is designed for aged care workers.