These patients may only require episodic (if any) access to specialist palliative care, instead relying on primary care providers such as their general practitioner to deliver ongoing support for the physical, psychological and social challenges specific to the nature of their illness.
Many of these patients, including young patients with life limiting illnesses, reside in residential aged care facilities (RACF).
Acute medical care in Australia prioritises treating disease and preserving life. This acute model of care does not necessarily respect the needs of patients living with life limiting illnesses and can impose additional unnecessary pain and distress without necessarily delivering desirable outcomes.
A palliative approach in aged care settings recognises that healthcare should not be based on diagnosis alone. The aim of a palliative approach is to maximise quality of life through appropriate needs-based care. This approach provides a positive methodology for reducing an individual’s symptoms and distress.
2.1. Palliative care approach - A palliative approach aims to improve the quality of life for individuals with a life-limiting illness and their families, by reducing their suffering through early identification, assessment and treatment of pain, physical, cultural, psychological, social, and spiritual needs. i
2.2. Life limiting illness - An illness that can be reasonably expected to cause the death of the patient within a foreseeable future. ii
People with life limiting illnesses living in RACF should be afforded quality of life by being provided with palliative care from diagnosis, as their illness progresses and the final days when they are approaching end of life.
A palliative approach should provide the patient with:
- autonomy, dignity, comfort and respect;
- honest, open discussion about conditions and treatment options;
- choice in available evidence-based treatment options;
- effective management of pain and other distressing symptoms;
- quality of life, as defined by the patient, in the circumstances;
- their cultural or spiritual wishes honoured; and
- access to the people they wish to be present.
A palliative approach to providing care affirms life and respects dying as a normal process. It is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life. It intends neither to hasten nor postpone death but rather aims to enhance quality of life while also positively influencing the course of illness.
4. Role of the Medical Practitioner
Through prescribing and medical treatment decisions, general practitioners play a central and critical role in directing the care of people with a life limiting illness who live in RACF. By acknowledging that the goals of acute care and palliative care are fundamentally different, medical practitioners can ensure that a person receives a palliative approach and appropriate therapies.
Care should be provided on the basis of need rather than diagnosis alone. An appropriate level of care does not always mean sending patients to hospital. Where possible and appropriate, a palliative approach should limit distressing interventions such as hospitalisation, by providing care in-situ. This does not exclude all hospital visits, as some may be necessary to maintain a level of comfort for the patient. The focus should be on active comfort and a positive approach to reducing an individual’s symptoms and distress.
It is important that strategies are developed early to address issues of pain management and symptom relief. Strategies should also take into account the patient’s spiritual and cultural needs.
A palliative approach requires the medical practitioner to engage in open dialogue with the patient and their family (subject to the consent of the patient), about the patient’s wishes.
5. Planning and Communication
Clear and culturally appropriate communication is of central importance to the palliative approach. Patients and their families and carers need to understand their options and realistic outcomes of various treatment modalities. This is the only way they can make informed choices.
Life limiting illnesses with long, unpredictable courses can create situations where the patient’s ability to communicate and their capacity to make decisions changes over time. Provision should be made to ensure that family are engaged in care decisions and communications between the medical practitioner and the patient, to the extent they wish to be and subject to the consent of the patient. Patients and their families should be encouraged to participate in the ongoing decisions about palliative care.
A palliative care plan agreed between primary care providers, aged care services, disease specific organisations and services, and specialist palliative care services can be an effective tool for discussing, and communicating an agreed palliative approach.
Palliative care plans can ensure all RACF staff, primary care providers and specialist care services, know when a patient is not to be automatically transferred to hospital for invasive or burdensome treatment. The documentation should be sufficiently detailed to account for different care situations. It should not exclude all hospital transfers, for example, if acute care is urgently needed to address a fracture or the consequences of a fall, which prevents the patient being nursed comfortably.
A consistent format across all RACF for palliative care plans would help all staff recognise when a palliative care plan is in place.
6. Role of the Residential Aged Care Facility (RACF)
RACF that are appropriately designed and equipped to support medical practitioners’ access to patients and their files, allow a palliative approach to be provided effectively and at the earliest opportunity. The palliative approach is best supported by RACF systems that facilitate open communication between the aged care team and patients.
Adequately skilled care staff with the right skill mix available to provide quality care at all hours can reduce the need for transfer to an acute care setting, thereby avoiding potential distress to the resident and their family. All RACF staff should have access to continuing education about the palliative approach to providing care.
Barriers to the integration or collaboration of the usual practitioner should be removed.
AMA Code of Ethics – 2004, editorially revised 2006
AMA Position Statement on Care of Older People 2011
AMA Position Statement on End of Life Care and Advanced Care Planning 2014