Medical care of older persons in residential facilities

Palliative and end of life care

Palliative approach
Specialist palliative care
End of life care

'Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual'.⁵¹

In considering palliative care for residents, GPs can distinguish between three forms: a 'palliative approach' provided by primary care doctors, specialist palliative care service provision, and end of life care.⁵² It is important to distinguish between medical treatment and palliative care. While in some states, a guardian may be able to refuse a medical treatment on behalf of a patient, they cannot refuse palliative care.

Palliative approach

A palliative approach embraces the World Health Organisation definition of palliative care.⁵³ It incorporates a positive and open attitude toward death and dying by all service providers working with residents and their families, and respects the wishes of residents in relation to their treatment near the end of life. This approach, by shifting from a 'cure' to a 'care' focus, is especially important in the last 6 to 12 months of life.

Active treatment for the resident's specific illness may remain important and be provided concurrently with a palliative approach. However, the primary goal is to improve the resident's level of comfort and function, and to address their psychological, spiritual and social needs.⁵⁴

People with a life limiting illness, or those who are dying due to the ageing process, will benefit from receiving a palliative approach. The more complex illness trajectories in the noncancer older population can make it very hard to determine when the end of life is near and no more 'medical rescues' are plausible. However, symptom management to decrease suffering is vital.⁵⁵

Australian Guidelines for a palliative approach in residential aged care are available at www.palliativecare.gov.au.⁵⁶ Multicultural palliative care guidelines are also available, including maps of major Australian cities with population breakdown for various cultural groups.⁵⁷

Symptom assessment tools can be valuable to define symptoms, score their severity and monitor the effectiveness of treatments (see Tools 2, or the Memorial Symptom Assessment Scale website (www.promotingexcellence.org/downloads/measures/ memorial_symptom_short_form.pdf) website. In patients who lack sufficient cognitive and communicative capacity for self reporting instruments to be used, observational instruments may be supplemented by recorded observations of symptoms. Tools to assess symptoms and pain in elderly patients are available at the World Health Organisation Cancer Group website (www.whocancerpain.wisc.edu/eng/17_1-2/Tools.html). The Palliative care therapeutic guidelines provide GPs with guidance on symptom management⁵⁸ (see Tool 7 and Tool 8).

General practitioner communication with residents, RACF staff and other service providers becomes particularly important, and documentation of who is involved in providing care needs to be current. Lack of clarity among the aged care team members or a lack of openness with residents and families may lead to conflict and confusion about care goals. Family views and issues are important and need to be understood. Some relatives and staff may need GP support to accept the decision of residents for a palliative approach.

Specialist palliative care

General practitioners may have access to a palliative care team, usually including doctors, nurses, physiotherapists, occupational therapists, social workers, clinical pharmacists, dieticians, speech therapists and pastoral care workers. Specialist palliative care services can augment care by GPs and RACF staff, with intermittent or specific input as required, eg by providing:

help with assessment and treatment of complex problems (physical, psychological, social, cultural and spiritual)
discussion about goals of care, advance care planning, prognosis, effective symptom control or admission of a terminally ill patient to hospital
information and advice to GPs and RACF staff on challenging issues such as ethical dilemmas of nutrition and hydration, management of depression and other symptoms, spiritual issues, and concerns held by the patient, relatives and staff toward the end of life
assistance in maintaining a sense of therapeutic partnership between GPs, RACF staff, patients and their relatives/carers (especially when there are difficult family relationships or complex 'unfinished business')
resources for bereavement management.

End of life care

Good quality care at the end of life can be provided in a RACF if staff are adequately trained and resourced. This will mean that residents can remain in familiar surroundings, cared for by staff and with other residents they know, rather than move to the unfamiliar surroundings of an emergency department or hospital ward focussed on 'cure'.

Methods used to determine survival time are not accurate and are not recommended. Active treatment to manage difficult symptoms, while continuing to follow a palliative approach, is considered best practice. Dying with dignity in a supportive environment is the key aspect of quality palliative care.

British Medical Journal surveys of people who are approaching death (and also of their relatives) led to the supplement 'What is a good death'.⁵⁹ Their views were summarised as 'principles of a good death'⁶⁰ in the following 12 points:

to have an idea of when death is coming and what can be expected
to be able to retain reasonable control of what happens
to be afforded dignity and privacy
to have control of pain and other symptoms
to have reasonable choice and control over where death occurs
to have access to necessary information and expertise
to have access to any spiritual or emotional support required
to have access to 'hospice style' quality care in any location
to have control over who is present and who shares the end
to be able to issue advance directives to ensure one's wishes are respected
to have time to say goodbye and to arrange important things
to be able to leave when it is time, and not to have life prolonged pointlessly.

During the final days and weeks of life, more care decisions are often necessary. Respecting the patient and their family's wishes on management options is important. Goals become more focussed on the patient's physical, emotional and spiritual comfort and/or support for their family and carers. Giving time to those left behind by listening to their thoughts and the bereavement arrangements will help them achieve peaceful closure.

The 'Multidisciplinary care path for palliative care: end stage care' (see Tools 3) offers a care path that can be used by RACF staff, GPs and other service providers caring for residents at the end of life.

Recognising that death is imminent can sometimes be difficult. However, within hours to days of death, several of the following symptoms and signs (not explained by a reversible cause) may be present ⁶¹:

peripheral shutdown and cyanosis
changes in respiratory patterns (eg. Cheyne~Stokes breathing)
drowsiness and reduced cognition (no response to verbal and/or physical stimuli)
uncharacteristic or recent restlessness and agitation
retained upper airways secretions
cardiac signs (eg. hypotension, tachycardia)
decreased mobility (eg. becoming bed bound)
decreased ability to swallow safely.

Many of the troubling recurrent symptoms of the terminal phase can be remembered under the mnemonic 'PANERO', which stands for Pain, Agitation, Nausea (and vomiting), Emergencies (such as haemorrhage or seizures), Respiratory symptoms (such as noisy breathing) and Other symptoms (related to the specifics of the terminal illness) (see Tool 3). Checklists of common and distressing symptoms in the terminal phase can form the basis for locally derived treatment algorithms.⁶²

Tools are also available to help audit and improve the quality of palliative care for patients in the terminal phase. The Liverpool Care Pathway template (Table 3) incorporates 11 goals covering care of the dying patient, as well as use of education and resources.⁶³ The Liverpool Care Pathway (www.lcp-mariecurie.org.uk) can be used with the 'RACGP 5 step audit cycle'⁶⁴ to contribute Group 1 continuing medical education (CME) points required for vocational registration. It can also be used with the residential aged care continuing improvement cycle to contribute to RACF accreditation.⁶⁵

Table 3. The Liverpool Care of the Dying Pathway ⁶⁶

Goals	Comfort measures
Goal 1	Current medications (via appropriate route) assessed, nonessentials discontinued
Goal 2	As required subcutaneous medication written up as per protocol (eg. pain, agitation, nausea and vomiting, emergency orders, respiratory tract secretions)
Goal 3	Discontinue inappropriate interventions (routine blood tests, antibiotics, subcutaneous fluids, not for resuscitation documented when necessary, routine turning regimens/vital signs discontinued)
	Psychological Insight
Goal 4	Ability to communicate in English assessed as adequate
Goal 5	Insight into condition assessed
	Religious/Spiritual Support
Goal 6	Religious/spiritual needs assessed with patient/family
	Communication with family/other
Goal 7	Identify how family/other are to be informed of patients impending death
Goal 8	Family given relevant RACF, funeral and bereavement information
	Communication with primary health care team
Goal 9	GP and other key people in the primary care team are aware of patient's condition
	Summary
Goal 10	Plan of care explained and discussed with patient/family
Goal 11	Family/others express understanding of plan of care