Manage Dying

While individuals may differ in their signs and symptoms of dying there are some common indicators that a person may be in the final days of life. These include:

• Signs and symptoms associated with the terminal phase
• 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
• An acute event has occurred requiring revision of treatment goals
• Profound weakness
• Changes in breathing patterns

The CareSearch website has a section on Planning for a Home Death which includes a checklist for planning an expected home death. Main topics covered are:

• clarify expectations and support
• assess the home situation
• plan for symptom management
• information that families need

There also is a resource tab for clients and family caregivers.

Talking about death and dying can be difficult.

CareSearch provides an extensive list of resources for discussing the process of death and dying.

palliAGED has a downloadable Practice Tip on Talking About Dying for Nurses (315kb pdf) and Careworkers (454kb pdf).

An End-of-Life Pathway is available under the Australian Government’s Support at Home program. This Pathway will give older people access to a higher level of in-home aged care services where they wish to remain at home until the end of their life. Funding up to $25,000 is available, for use over a 12-week period, and up to 16 weeks if needed.

An older person is eligible to assess the End-of-Life Pathway if they meet these criteria:

• A medical practitioner or nurse practitioner provides an estimated life expectancy of three months or less to live, and
• The older person has score of 40 or less on the Australia-modified Karnofsky Performance Status (AKPS) (37kb pdf)), which is a mobility/frailty indicator.

Consider older people with a preference to receive care at home at the end of life who may benefit from this initiative, including:

• Existing Support at Home participants who can transition to the End-of-Life Pathway: Their provider can request a high-priority Support Plan Review to access the Pathway. The End-of-Life classification will replace their previous ongoing classification.
• Older people who are not current Support at Home participants and who would like to access the End-of-Life Pathway can either:
  • A medical practitioner or nurse practitioner can complete the End-of-Life Pathway form and upload it to the ‘Make a Referral’ online tool on My Aged Care. GPs can use the e-referral option. This will trigger a high priority aged care assessment.
  • Their representative can apply for a high priority aged care assessment on the My Aged Care. An End-of-Life Pathway form then has to be completed by a medical practitioner or nurse practitioner, which can be uploaded to the website or given to the assessor at the time of assessment.

The End-of-Life Pathway can also be accessed by contacting My Aged Care (Ph: 1800 200 422) or by visiting an Aged Care Specialist Officer (ACSO) at a Services Australia centre. This is regardless of whether the person is already on the Support at Home program. An aged care assessor will review the submitted End-of-Life Pathway form to confirm eligibility for the pathway.

These resources provide further information:

• The End-of-Life Pathway fact sheet provides an overview about this pathway as part of the Support at Home program.
• The Support at Home program manual provides information to assist registered providers to understand and comply with the program rules, procedures and obligations. The End-of-Life Pathway is covered in Section 14 of this manual.
• Other available program resources are available on the Support at Home program, including guidelines, procedures, webinars and fact sheets.

Assessment and management of symptoms is critical for dying residents. Information about medication is available on the CareSearch GP Hub - End of Life Symptoms webpage including:

1. An overview of key points guiding quality pharmacological management of end of life (terminal) symptoms.

2. Prescribing information for managing common end of life symptoms: Pain; anxiety and emotional distress; delirium that is causing distress; excessive secretions; nausea and vomiting; and shortness of breath.

The caring@home project has resources to support people to be cared for and to die at home, if that is their choice. This factsheet provides information about caring@home and outlines the resources the project has available to support clinical services, patients and families.

A syringe driver are commonly used for symptom management and are used to provide continuous medications subcutaneously when a person is no longer able to swallow. More information and resources about syringe drivers can be found at this CareSearch webpage.

palliAGED also has information on Subcutaneous Medication Administration.

There are legal regulations and laws concerning death certification and coronial procedures. Death is to be verified and depending on which state or territory you are in this may be done by a nurse or doctor. Certification of death must occur which is usually by the GP. In some instances deaths must be reported to the coroner.

palliAGED has a downloadable Practice Tip on After-Death Choices for Nurses (220kb pdf) and Careworkers (442kb pdf).

The After Death Care section of the CareSearch website has information on things to be done after the client has died including:

• Verification and Certification of a Death
• Care of the Body
• Religious and Cultural Considerations
• Tissue Donation

Watch the ELDAC Home Care Toolkit educational video on After Death Care and Bereavement.