Approach to preparing for the last days of life
Plan and prepare for a patient’s last days of life and for their death. With good care, most patients can die comfortably. Discussion and careful planning with the patient, family1 and carers can alleviate anxiety about what may happen in the lead-up to and around the time of death. Most people fear the dying process and do not know what to expect; it is helpful to explain it to them in simple terms. A shared decision-making approach to prepare for the last days of life is summarised in Preparing for the last days of life; additional considerations for patients who are expected to die at home are summarised in Additional considerations in preparing patients for death at home. For more information on what ‘dying well’ means to a patient, see Understanding what ‘dying well’ means to a patient.
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Explain the process of deterioration and the last days of life to the patient and their family and carer(s) [NB3] |
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Communicate openly and honestly about the patient’s prognosis; provide information with kindness and compassion. Explain what to expect as the patient’s condition deteriorates, including symptoms and signs, and how these will be managed. Emphasise that the focus of care will be comfort, symptom management and treatment of distress. Provide written information to support these conversations [NB4]. |
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Review the patient’s preferences and goals of care, including resuscitation status |
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If the patient has impaired decision-making capacity, respect their preferences whenever possible—for guidance on decision-making and ethical challenges, see Decision-making and ethical challenges in palliative care. Reaffirm or clarify goals and ceilings of care with the patient (or their substitute decision-maker if applicable). Review any advance care plans, and update as required. Discuss resuscitation with the patient and family, if this has not already occurred (and it is possible and appropriate). Ensure all documentation is shared with the entire healthcare team and written instructions are available regarding resuscitation measures, to avoid inappropriate resuscitation. |
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Discuss the preferred place of care and death with the patient and their family and carer(s) |
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Discuss the preferred place of care and death with the patient and their family and carer(s); review these decisions as required—see Location of care and death in the last days of life. Planning ahead can help avoid death during transit or in an emergency department. If the patient is not in their preferred place of care or death when nearing the last days of life, discuss their preferences, and the benefits and risks of transfer; organise timely transfer (if appropriate). |
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Consider the support needs of the patient and their family and carer(s) |
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Provide practical and emotional support to the patient and their family and carer(s) in a culturally responsive manner—see also Supporting carers and families in the last days of life. If available and as necessary, consider referral to support services (eg social worker, counsellor, spiritual support, bereavement support, cultural support, palliative care volunteers). |
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Consider the patient’s equipment needs |
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Ensure the patient has access to equipment needed in the last days of life (eg pressure-relieving mattress, beds for family members); if available and necessary, consider referral to members of the multidisciplinary team (eg occupational therapist, physiotherapist, speech pathologist, wound care nurse)—see Who provides palliative care?. |
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Review drugs and provide anticipatory drugs for the last days of life |
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Anticipate and plan for the management of new or worsening symptoms that commonly occur in the last days of life, including prescribing and accessing anticipatory drugs (eg from the Pharmaceutical Benefits Scheme Prescriber’s Bag); see also Anticipatory prescribing. Rationalise drugs that are no longer beneficial for symptom control or can no longer be swallowed—for advice, see Medication rationalisation in palliative care. For drugs that need to be continued for symptom management in the last days of life, if necessary, change the drug or route of administration. |
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Consider discussing after-death preferences and plans, including legal, funeral and legacy planning |
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Some patients may wish to discuss their after-death preferences and make plans; for example, they may wish to:
If appropriate, consider discussing after-death care such as tissue or organ donation, or body donation to medical science or research. |
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Note:
NB1: For management in the last days of life, and what to do after the patient’s death, see Principles of care in the last days of life and After-death care. NB2: For additional considerations for patients being cared for and dying at home, see Additional considerations in preparing patients for death at home. NB3: ‘Family’ should be interpreted in the broadest manner—it includes whoever the patient says is important to them. NB4: Factsheets are available from CareSearch, Palliative Care Australia and the Australian Commission on Safety and Quality in Health Care. |
Assess patient, family and carer support needs and arrange access to support (ideally 24-hour access to a nurse or GP who knows the patient):
- As appropriate, arrange for regular review by the healthcare team.
- Ensure the patient and their family and carer(s) know how to contact healthcare support at all hours [NB2].
Arrange:
- home care support to assist family and carer(s) to provide care at home; if appropriate, consider teaching family members how to provide general care and comfort
- supply of equipment to support care in the last days of life at home (eg hospital bed, pressure-relieving mattress, personal care equipment)
- supply of drugs and drug administration equipment in anticipation of symptom management in the last days of life; consider teaching carers how to administer subcutaneous medications, if appropriate [NB3].
Identify an authorised person who will be available to verify the death (depending on the jurisdiction, this may include a medical practitioner, nurse or paramedic); this will allow smooth transfer to a funeral home (see After-death care).
Provide the family and carer with information in anticipation of the patient’s death, including:
- how to recognise that the patient has died
- what to do when the patient dies
- who to call after the death; consider:
- the GP’s preferences in relation to being called out at the time of death (particularly if this occurs at night), and alternative arrangements if the GP is not available
- that it is usually not necessary to call the police or an ambulance when an expected death occurs at home
- the need to contact a funeral director.
GP=general practitioner
NB1: The approach to preparing for the last days of life is summarised in Preparing for the last days of life.
NB2: Give carers a phone number they can call at any time for advice or assistance.
NB3: Teaching carers who prefer to assist with drug administration in the last days of life may enable the patient to be cared for and die at home, particularly if access to after-hours support is limited; see Assisting patients and carers with medication management in palliative care and Assisting patients and carers to manage subcutaneous administration in the community.