Background
The following information relates to the care requirements for the last few days to weeks of life. The language used to describe this phase of life can be variable. [1-4,7] Management of the last days of life can be supported by discussions that have occurred previously. [6]
Many diseases have a natural history of progression and exacerbations that make the transition to the terminal phase difficult to identify. [6] The Australian Commission on Safety and Quality in Health Care defines dying as 'the terminal phase of life, where death is imminent and likely to occur within hours or days, or occasionally weeks.' [12] (p.32) The term dying is also used interchangeably with ‘terminal phase’ or ‘actively dying’.
Evidence Summary
The last weeks of life present numerous challenges for both healthcare professionals and informal carers. Previously managed symptoms may change, new symptoms may develop, and signs of impending death often present. As death approaches, symptom management can be complicated by the patient’s declining ability to communicate. [13] Although difficult to predict with precision, recognising and accepting that a person's death is approaching are important clinically to allow the person, family, carers, and the care team to prepare. [6,13-17]
Best practice in end-of-life care focuses on supporting both the person and their family and carers. [1,3] Such care includes a review of the person's wishes and goals of care; the proactive management of physical symptoms, emotional and cognitive symptoms, and spiritual needs; and the ceasing of non-beneficial treatments and investigations. [1,3,5,6]
Appropriate end-of-life care may include consideration of a preferred place of care and preferred place of death; these may not be the same. [3] A person’s preferred place of care and preferred place of death may change over time. [12,18] The physical environment of care is important to older people and their families. [19] Privacy as needed is important, as is proximity (physically and emotionally) to loved ones, to home and to nature. Cleanliness, homeliness, and accessibility are also valued. [19]
Physical problems to be anticipated and proactively addressed include pain, delirium/agitation, respiratory difficulties, mouth and skin care, bladder and bowel care, and nausea and vomiting. [3]
Quality communication is essential for providing and experiencing care at EoL and may have a positive influence on bereavement. [1,3] Quality communication is the focus of the concepts of death preparedness, [1,8] a good death [9] and culturally appropriate end-of-life care. [10]
Sensitive and timely communication is essential as many people fear the dying process and do not know what to expect. [7,9,15-17] Anticipation and planning for the management of new or worsening symptoms is important for older people receiving end-of-life care in the community and in residential aged care. [3,6,12,13,15,16,20] This includes anticipatory prescribing. [6]
Frailty presents with a diverse range of signs and symptoms and uncertainty in terms of future health. The majority of frail older adults die with complex interacting chronic medical illnesses and symptoms. [4] Early attention in planning for end-of-life should be given to frail older adults. [4,6]
Acknowledging and openly discussing the possible course of an illness with the dying person and can help him/her to understand how they may die and to make appropriate plans. [7,8] It can be very beneficial for family to be involved in these discussions. “Death preparedness” [1,8] is associated with improved quality of death and dignity, care consistent with a person’s wishes and greater support for carers and surrogate decision-makers. [8] These processes and benefits link to the concept of a "good death". [9]
Cultural norms are central to how individuals approach life, EoL, and death. [10,21,22] For older adults of cultural and linguistically diverse (CALD) groups, EoL preferences are influenced by specific cultural values and traditions that may contribute to misconceptions of their preferences in health care settings. [10,21,22] Guidance is available for end-of-life care of Aboriginal and Torres Strait Islanders. [10,21]
Integrated care pathways for the last days of life detail the essential elements of multidisciplinary care to manage a specific clinical problem and ensure that the best available evidence is systematically integrated into care delivery while providing a framework for auditing and benchmarking care. [6] The Residential Aged Care End of Life Care Pathway (RAC EoLCP) guides the provision of good quality end-of-life (terminal) care in residential aged care. [5] Developed in Australia, RAC EoLCP incorporates evidence-based best-practice clinical management and care coordination for dying residents.
The palliAGED Symptoms and Medicines can help to guide evidence-based practice in the care of older people in the last days of their life (terminal phase). The palliAGED apps for doctors and nurses also support terminal care.
Quality Statement
The quality of the evidence is acceptable to high. Certain reviews [10,11,18,19,22] guidelines [3] and clinical guidance [5,6] are specific to end-of-life care of older people.
Page updated 02 July 2021