Actively dying and wanting to be at home

Assessing the dying patient

When an actively dying patient asks to die at home, or the family asks to take the dying patient home, enlist the palliative care consultancy service to make an assessment.

If you don’t have access to a palliative care consultancy service, ask for help from a clinician with appropriate skills. This may be a senior colleague or a specialist, such as a geriatrician, or a peer.

The assessment should include:

• diagnosis of active dying - the patient is approaching or is in the terminal phase
• risk of the patient dying while being transported
• presence of 24–hour care (carer, family, network)
• the ability of the carer, with support, to provide adequate care and symptom management
• the carer’s needs for psychological and emotional support and assistance with the patient’s personal, nursing and medical care
• home situation, such as who else lives there and any potential risks.

An open and honest conversation with the carer must occur to ensure that the carer understands:

• the patient is actively dying
• what the carer will need to do for the patient around-the-clock, ideally with the support of family and friends
• how family and friends may be able to help, for example by drawing up a roster to help with physical care, to give the carer a break and to prepare meals
• how the specialist community palliative care service will support the carer, within the service's limitations - team members from the service will visit and leave again while the carer is always present
• what to expect, including information about the dying process
• what to do when the patient dies
• the limitations of the their capacity as carer.

Reinforce all verbal information for the carer with written information.

Deaths that are reportable to the coroner

Where applicable, confirm that the coroner’s requirements can be met. Deaths that are reportable to the coroner include:

• a fall or surgery directly contributing to the death
• the patient lived in a group home
• the patient was a prisoner.

Inform the carer that death in these circumstances will need to be reported to the coroner and that the implications of this will be:

• the general practitioner or the community palliative care service will notify the coroner
• ambulance and police will attend after the death
• the coroner will decide how long the body will be kept before it can be released to a funeral director.

Inform the general practitioner and community palliative care service that the death will be reportable to the coroner.

Discharge planning and referrals

Phone the referral coordinator at the relevant specialist palliative care service to inform them of the forthcoming urgent referral and negotiate a date and time for them to meet the patient and carer in the home. It may be appropriate for a team member to meet the patient and carer in hospital and start the assessment there.

Co-ordinate the discharge around delivery of equipment and availability of services. Avoid discharging a patient on a Friday or over a weekend or public holiday as services are less available. Discharge earlier in the week and well before a public holiday gives the best chance of establishing care at home and preventing readmission to hospital. Negotiate with the specialist palliative care service about what is possible if time is short.

Phone the general practitioner and update them on the patient’s condition. General practitioners often lose contact with their patients during the treatment phase. Request a home visit as soon as possible but note that many general practitioners no longer make home visits. If this is the case for your dying patient, discuss how the lack of a home-visiting general practitioner will be addressed with the referral coordinator at the palliative care service. Who will manage ongoing symptoms and prescribing? Who will write the death certificate?

If there is an implanted cardioverter defibrillator (ICD) in situ, ensure deactivation to avoid ICD shock. Contact cardiology for advice.

Equipment

Arrange an electric bed to ensure safe care through an urgent referral to occupational therapy. It takes one working day for a bed to be delivered in the city but longer in the country.

Ensure the bed and other equipment are in place for the patient’s arrival home OR ensure the carer and family are prepared to provide all hands-on care until they are in place. Health and safety requirements prevent nurses from providing care to patients in beds that cannot be height-adjusted.

Arrange home oxygen if the patient is oxygen dependent. A medical order must to be sent to the supplier and it will take one working day for delivery of oxygen in the city and longer in the country. The respiratory unit must be notified immediately. Arrange orders for subcutaneous and sublingual medicines and ensure supply.

Continuous subcutaneous infusions (syringe drivers)

A continuous subcutaneous infusion (syringe driver or pump) may be the most appropriate means of managing symptoms. If so, arrange continuing and breakthrough orders as well as a week’s supply of medicines.

If a syringe driver is already in situ, ensure the specialist palliative care service can visit in time to refill it. Ensure the battery has at least 80 per cent life. Coach the carer about how the syringe driver works and what to do if it alarms.

Medicines

Anticipate and prepare for all potential symptoms. Arrange anticipatory medicines.

Other comfort care

Normalise reduced oral intake, coach the carer in mouth care and supply mouth swabs.

Anticipate urinary retention and incontinence – they are common at end of life and can cause acute stress. Consider insertion of an indwelling catheter (IDC) if the patient and carer wish. Ensure the patient is discharged with enough incontinence pads. Email or fax IDC orders to the specialist palliative care service. They may ask you to send them to their partners at a community nursing agency, such as Royal District Nursing Service.

Arrangements after death

You may be asked to supply a death certificate if the patient dies at home and the general practitioner is unable or not prepared to do this. A doctor from the palliative care service may write the death certificate if they have seen the patient.

If the patient’s religious or cultural beliefs require burial soon after death, and they are not a coronial case, document the plan for the writing of the death certificate and communicate it to the community palliative care service and general practitioner.