Planning for a Home Death

Key points

  • Many palliative care patients wish for a home death, but despite this the majority of people continue to die in hospital
    • It is important that the person’s wish to die at home (or elsewhere) is identified and discussed well before the terminal phase
    • Whilst significant barriers to home deaths exist, some of these can be overcome by active planning and timely practical support
    • When caregivers do not want or cannot cope with a home death, then it may not be achievable.
  • Keeping a dying person comfortable at home requires medical, nursing, and pharmacy input. The GP’s involvement in supporting families in this phase is crucial.
    • When a patient does not have access to a GP who will do home visits, assess, prescribe appropriate medications, and write a death certificate, then a home death may not be achievable.

Checklist - Planning for an expected home death

Helping Patients and Families Plan for an Expected Home Death - GP's Checklist

1. Clarify expectations and support

What has the patient said about their wish to stay at home to die?

Do those who live with the patient know about and share that wish?
  • Has the plan been discussed within the family?
  • Consider - young children, others with care needs in the household
Are there enough people to share the care?
  • Consider their practical, hands on availability for round the clock care
  • Encourage a roster, with time out
Is it possible to determine the patient's prognosis, in order to help the family plan ahead and marshall their resources? Eg, is care likely to be needed for:
  • Weeks or
  • days or
  • hours
For more: Assessing the Dying Patient

What is the back-up plan if either the patient or the family find it difficult?
  • Clarify and document the plan and ensure that it is realistic, and understood by all involved
  • Consider whether there are specific services that can support families caring for someone who is dying at home, for instance night nursing services or volunteers - the local palliative care service can advise
  • Provide a letter (or Ambulance Plan) describing the palliative goals of care in case of a triple zero call, clearly stating that the patient is dying and that cardiopulmonary resuscitation is not appropriate
For more: Information needed for shared care

2. Assess the home situation

Will the patient be able to be cared for safely and comfortably in the home?
  • Refer to home nursing or palliative care nursing services, and ask them to teach the family about how to provide care safely
  • How much nursing support is available? Specifically, how many visits can the patient have?
  • Are there complex nursing needs that will be difficult to manage at home eg, difficult wounds, fistulas, spinal analgesia, etc
  • Consider equipment that may be needed to nurse a bed-bound patient: eg, hospital bed, mobility aids, commodes and other personal care equipment, wheelchair, pressure mattresses, and so on
  • Consider a palliative care referral for an occupational therapy and/or physiotherapy assessment to advise on and organise equipment
  • Discuss the option of an in-dwelling catheter to reduce the burden on both patient and family in the terminal phase
  • Encourage the family to think about any practical rearrangements that might make caring easier or safer - eg, moving a patient's bed to a different room, or perhaps relocating the patient and carers to a different family member's home - remembering however that a move into a different area may disrupt their eligibility for services, so plan ahead with this

3. Plan for symptom management

Review long-term medications - cease any that no longer contribute to the patient’s comfort

Discuss with the family how the patient's symptoms will be reviewed and managed, eg:
  • Whether home nurses will report to the GP
  • How often GP visits will occur
  • What the palliative care service will do
  • Arrangements for providing prescriptions
Plan for predictable, common symptoms that occur at the end-of-life: 
  • Agitation
  • Anxiety
  • Delirium
  • Dyspnoea
  • Nausea
  • Pain
  • Terminal secretions
Ensure emergency medications are available in the house for when they are needed. This is best done well in advance as deterioration can be unpredictable
  • Remember - dying patients cannot take oral medications
  • Subcutaneous medications are preferred to ensure continuing symptom control, with bolus medications via a subcutaneous butterfly needle, or a syringe driver with a 24 hour infusion, or a combination of these
  • Family members should be taught how to give breakthrough doses by the palliative or home nurses
  • Check that medications are available at a community pharmacy, and that the caregivers have an adequate supply to get through after hours and weekends in particular
Consider whether a plan is needed for high risk problems such as:
  • Bleeding risk
  • Bowel or airway obstruction
If care needs are complex, or a high risk of bleeding or airway obstruction exists, seek early advice from a palliative care specialist.

For more: Guidance on managing end-of-life symptoms

4.  Information that families need

Brochure from Palliative Care Australia - The dying process

Are the carers fully prepared for the fact that the dying person will be dependent and bed bound?

Do the carers need information about eating and drinking in the palliative care situation, for instance
  • That loss of appetite is a common and predictable feature of advanced disease?
  • That swallowing deteriorates with the approach of the terminal phase?
  • Do they need ideas about what, and how much, to offer the patient to eat and drink, and how to do this safely?
Do the carers need information about physical changes that occur as a person is dying, including:
  • Changes in breathing patterns, including the possibility of terminal secretions ('death rattle')
  • Changes in skin colour and temperature
  • Changes in level of consciousness, including the possibility of terminal delirium
Ensure that the family has access to twenty four hour phone advice about symptoms or changes in the patient's condition, and that everyone providing care knows who to contact
 
Do the caregivers need information about what to do after the patient dies? eg,
  • Encourage them to think about choosing a funeral director 
  • Reassure them that there is no urgency to ring anyone after the patient dies
  • Ensure that they know which doctor has agreed to certify death, and the arrangements for contacting them

From: CareSearch

Free full text article - Home-based support for palliative care families: challenges and recommendations

Home-based support for palliative care families: challenges and recommendations.

Ref: Hudson P. Home-based support for palliative care families: challenges and recommendations. Med J Aust. 2003 Sep 15;179(6 Suppl):S35-7.

Brochure for family caregivers - About the process of dying

The dying process
This brochure outlines the common physical changes that occur when a person is dying, and gives advice for family caregivers on how to cope with them.

From: Palliative Care Australia

Patient resource - Considerations for a Home Death

Considerations for a home death
This excellent online Canadian resource 'walks' patients and/or families through the practicalities of caring for someone who is dying at home.

Ref: Stenekes S, Streeter L. Considerations for a home death [Internet]. Canadian Virtual Hospice; 2014 [updated 2014 Feb; cited 2014 Oct 1]
From: Canadian Virtual Hospice

Last updated 16 February 2017