162 Australasian Journal on Ageing, Vol 23 No 4 December 2004, Review 162 –166

Blackwell Publishing, Ltd.ReviewPalliative care in aged care

Recognising the need for palliative care in aged care

Jennifer CooperSchool of Nursing and Midwifery, Flinders University, Adelaide, South Australia, Australia

Karen GlaetzerSouthern Adelaide Palliative Services, School of Medicine, Flinders University, Adelaide, South Australia, Australia

IntroductionIn 2002 the World Health Organization released a definition ofpalliative care which states that:

Palliative care is an approach that improves the quality oflife of patients and their families facing the problem asso-ciated with a life-threatening illness, through the preventionand relief of suffering by means of early identification andimpeccable assessment and treatment of pain and otherproblems, physical, psychological and spiritual.

This definition clarifies the essence of palliative care, butfurther consideration is required to identify how this theorycan be applied in practice. Perhaps the most difficult context inwhich to identify the need for palliative care is in the aged caresetting. Residents of residential aged care facilities (RACFs)require accurate initial assessment and regular reappraisal todetermine the appropriateness of a palliative approach to care.It is of utmost importance that this appraisal should be basedon individual needs, rather than being diagnosis specific orprognosis based.

Some of the diseases more prevalent in older people, suchas Alzheimer’s disease which affects cognition, results inother people making choices about their treatment. With thisscenario, it is realistic to expect that ethical conflicts will arisewhen planning palliative care for older people [1]. It is ourintention to identify a process for assessing residents of RACFs,to determine the appropriate timing for the implementation ofa palliative approach to care.

Population of residential aged care facilitiesThe role of RACFs (formerly known as nursing homes) inproviding care for older people requiring palliative care hasincreased exponentially. In 1960, only 1% of South Australianresidents died in RACFs. This had increased to 20% by 1990[2]. Along with many other countries in the developed world,Australia has an ageing population. The availability of places

in RACFs has failed to keep pace with this increase in need.More stringent criteria for admission has been established,which has subsequently resulted in a more dependent residentpopulation and a higher turnover of admissions and deaths[2]. There has been an increased pressure to dischargeolder patients from expensive acute hospitals to the cheaperalternative, RACFs.

Care is being provided within these facilities in the face of sub-stantial challenges such as declining reimbursement for nursinghours, nursing and care staff shortages and high staff turnovers[3]. Despite these challenges or obstacles, it is an increasingreality that the residential aged care setting is an appropriateplace for end of life care of older people. These facilities arethe final residence for many frail, older people who are dyingof chronic progressive diseases. RACFs are increasinglybecoming the place of care and site of death, and currently inAustralia at least one in five older people die in this setting.In fact, in 2002–2003 RACFs in Australia were permanenthomes to 140 297 older people. During that period, 83.6% ofseparations from those facilities were due to death, accountingfor 33% of female and 25% of male residents [4].

Overseas, as many as one in two older persons will have beenin a RACF in his or her last month of life [3]. It is becomingmore recognised that:

The staff who care for Australia’s nursing home and hostelresidents have an increasingly complex and challengingrole. Over the past 20 years, Federal Government policies ofenhancing community care provision, preadmission clientassessment, and the linking of funding to the level of clientdependency have ensured that only the most dependentpeople now access residential care. [5; p. 20]

Caring for older people in RACFs is a subject of increasinginterest as the populations of the developed world age, and theexisting literature reflects its complexity [6]. The provision ofhighly competent care by skilled nurses is essential to maintain-ing quality care in RACFs. Many older people who seek orrequire care in a RACF are not only 10 years older than theirequivalents a decade earlier [7], but they have reduced acuity,increased incidence of dementia and increasingly morecomplex and complicated health needs. According to Joy et al.[7] the prevalence of dementia in RACFs may be as high as80% and there is now recognition that persons who haveend-stage dementia have a legitimate need for a competent andcompassionate palliative care service.

The evidence that Joy et al. [7] drew on supported the premisethat nursing contribution enhances the quality of residential

Correspondence to: Jennifer Cooper, School of Nursing and Midwifery, Flinders University. Email: Jennifer.Cooper@flinders.edu.au

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aged care and that qualified nurses have responsibilities withina role that encompasses health, clinical and social needs ofresidents. The gerontic nurse, who is highly skilled in theclinical assessment of older people, will identify the mostpertinent issues in the situation and respond to them usingskilled judgement. Engagement with older people is set withina framework that respects dignity and preserves the integrity ofthe person in the situation. Despite this level of expertise, thisfragile, professional practice can be undermined and eroded byunqualified, non-registered care workers [8].

Culture of residential aged care facilitiesThere have been major changes in the Australian aged careindustry since the mid-1980s. These changes were broughtabout through the Aged Care Reform Strategies in the 1980sand have been further generated and supported throughthe Aged Care Act (1997) and the subsequent Aged CareStructural Reforms (October 1997) [6].

The economic realities of aged care indicate that providers ofresidential aged care are employing care staff who have little orno formal training in the common health problems found inthis setting [5]. The current care of older people context is onewithin a system that is driven by economic rationalisation andfails to recognise the need for adequate numbers of qualifiedstaff [9].

Whilst gerontic and palliative services share common ground,there is little evidence of genuine collaboration in servicedelivery or research. Both nursing services focus on the holisticcare of the person and their family, to enhance quality of lifewhilst maintaining dignity and individuality. Each strivesfor symptom control and relief through the least invasivetreatments and investigations in comparatively new serviceareas that are multidisciplinary in nature [10].

Nursing in aged care has grown and developed over the pasttwo decades. Registered nurses have managed gerontologicalcare over many years but there has been little acknowledge-ment of their skill and what they offer to the lives of olderpeople [8]. It is now generally accepted that gerontologicalnursing is in itself a specialty and the client group (i.e. olderpeople) have unique needs that are different from the youngerpopulation [7]. These needs include accurate, knowledgeableassessment by nurses who understand ageing, both healthyageing and the recognition of disease related change.

Residential care staff and palliative careIn July 2004 guidelines for the implementation of a palliativeapproach in residential aged care were launched. An educationprogram to support the implementation of the guidelines will bedeveloped in partnership with a range of organisations [11]. Asyet, there are no specifications for how staff who work in RACFsshould be trained to provide palliative care to this population.

A ‘link nurse’ model using selected nurses trained in the philos-ophies and the practices of palliative care has undergone

successful trials in South Australia [12]. These specially trainednurses act as a resource for staff, ensuring that the residentreceives optimal palliative care.

The implementation of a palliative approach requires morethan knowledgeable and skilled care staff. Staff members needto reflect attitudes that recognise the significance of prioritisingcare according to how the resident perceives their symptoms,rather than their medical diagnosis. They should acknowledgethe importance of communication with both resident andfamily, especially the responsibility to bring the family into themix of understanding and care.

Palliative care assessment and care planningThe primary goal in palliative care assessment in any setting isto identify the needs of the individual. Once this assessment ismade, a care plan is compiled that incorporates continuousreassessment to incorporate changes in the health state of theperson or to meet specifically expressed individual needs.

In a RACF, this plan should be agreed upon by the resident,family, doctor and staff. This provides clear direction andcommunication, minimising the potential for the attitudes,values and beliefs of individuals to influence care [13]. Olderpeople in RACFs commonly have chronic degenerativediseases, which have a less predictable course than diseasessuch as cancer. The disease process may be periodicallyinterrupted by acute exacerbations. Therefore, assessingresidents with chronic degenerative diseases for the appropri-ateness of palliation requires a systematic approach to ensurethat reversible conditions are not overlooked [14]. There mayalso be a gradual change that is reported, which predatesthe acute event. The indications of an impending declinemay include:

• The resident verbalising a desire to die, or a belief that thisis happening.

• Diminishing interaction with the environment.• Changing behaviours and responses.• Decreased appetite.• Weight loss.• Reduced mobility.• Increased incontinence.• Inability to swallow.

Blackburn [15] has recognised that older people have uniqueissues that need to be considered in the process of assessmentand care planning. These include: (i) multiple clinical diagnosesinvolving multisystem pathology; (ii) diagnosis of dying isoften made only by exclusion, that is, after failure of responseto standard treatment. This often means that the moment atwhich death can be predicted with certainty is closer to theactual event. (iii) Communication is more difficult due to thecombination of the higher incidence of confusion, expressiveproblems associated with cerebral vascular accidents andimpaired senses of hearing and vision; (iv) reduced socialnetworks exist, leading to reduced care and support fromfamily and friends.

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With these issues in mind, a methodical and systematic elimi-nation of the possible causes of deterioration is essential [14].What also needs to be considered is the underlying diseaseprocess, the availability of treatment for the condition, the like-lihood of response to treatment, comorbidities, the precedingquality of life, the impact of investigations and the wishes ofthe resident or their medical agent. By addressing these issuesa conclusion should be drawn that distinguishes the palliativeintervention required. The options include a palliative approach,specialised palliative care, or end-of-life (terminal) care.

If end-of-life care is indicated, assessment should identify thepresence of signs common to the dying process. These mayinclude a change in breathing patterns; noisy, moist breathing;peripheral shutdown; an inability to swallow; and an altera-tion in consciousness [14].

A palliative care plan should ideally be constructed, highlight-ing the general and specific needs of the individual resident[16]. This should be accessible to all staff and re-evaluated onan ongoing basis. Care goals should incorporate the physical,psychological and spiritual aspects of care.

People with advanced dementia are perhaps the most difficultgroup to accurately assess for their palliative care needs.Dementia is incurable, progressive and life shortening and iscommonly complicated by other diseases that further limit life[17]. Unless the person with dementia has an advanced direc-tive or medical power of attorney or guardian, the treatingdoctor and staff, in consultation with the family, must makedecisions about treatment for an acute event. These decisionsmay be guided by consideration of:

• Capacity of the resident to cooperate with the treatment.• Prognosis for survival with and without treatment.• Positive and negative effects of treatment options.• Level of functioning before and after proposed treatment.• Alternatives to a curative treatment strategy [17].

Any decisions about residents who no longer have decision-making ability should be made with the best interests of theresident in mind, and should include consultation with repre-sentatives nominated by the family and the facility staff.

The Functional Assessment Scale (FAST) has been found to bea useful tool to evaluate the stage of dementia and to guidetreatment decisions. This scale rates the degree of disability byconsidering factors such as vocabulary, activity and inconti-nence as predictors of survival. In conjunction, common medicalcomplications of end-stage dementia need to be considered,along with comorbid medical conditions, to accurately deter-mine the likely prognosis of persons with dementia [18].

Palliative care in residential aged care facilitiesWhat is required to determine the need for palliative carefor people who live in RACFs is not a diagnosis specific orprognosis based assessment, but an individual needs basedassessment. All residents of these facilities need a regular

reappraisal conducted if/when there is a change in the resident’smedical condition or a change in the resident’s goals fortreatment. This assessment and review should be based on theresident’s choices and should involve the members of thefamily and staff chosen by the resident. Attitudes of staffmembers that are conducive to the palliative approach includebeing available to discuss issues with the individual and familymembers, providing information in a proactive way, andhaving a sense of partnership with people and their families.Staff members need to be supportive of the importance of thefamily carer, be respectful of the choices that the resident andtheir family make about treatment options, and endeavour toanticipate the needs of those involved.

Consideration of the range of palliative approaches includes:(i) the need for a palliative approach when the resident’scondition is not amenable to cure and the symptoms of thedisease require effective symptom management. Provision ofactive treatment for the resident’s disease may still be importantand may be provided concurrently with a palliative approach.However, the primary goal of a palliative care approach is toimprove the resident’s level of comfort and level of function.(ii) Referral to a specialised palliative care team to addressspecific symptomology relating to a life-limiting illness. Thisform of palliative care does not replace a palliative approach.Rather, involvement of a specialised palliative care serviceaugments a palliative approach with focused, specific inputas required. (iii) End-of-life (terminal) care. This form ofpalliative care is appropriate when the resident is in the finaldays or weeks of life and care decisions and goals are focusedon the resident’s physical, emotional and spiritual comfort andsupport for the family.

The factors used to discriminate between the ranges ofpalliative approaches for an individual should include:

• Timing between apparent changes, that is, monthly,weekly or daily.

• Degree of mobility and how this has changed over time.• Interest displayed by the resident to maintain hydration

and nutrition and their ability to undertake these tasks.• Energy levels.• Changes required to medications and the resident’s ability

to take oral medications.• Frequency of episodes of confusion and the resident’s level

of consciousness.• Degree of general deterioration and whether there are

treatable or reversible aspects.

It should be assumed that a palliative approach and end-of-life(terminal) care would be provided by staff of RACFs who haveundertaken relevant training and education. However, someresidents may benefit from the skills of a specialised palliativecare team or transfer to another facility.

What is ethical palliative care?When considering the need for palliative care in older peopleit would be remiss not to engage in a discussion about some of

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the ethical issues that preside over palliative care. Ethical issuesshould have a major influence on decision-making. In healthcare, we have come to a broad acceptance of a number ofguiding principles: autonomy, beneficence, non-maleficenceand justice. The principles of autonomy are based on respect-ing people’s right to be informed and to make decisions abouttheir care [19]. It does not mean that the person makes all thedecisions, but it does mean that we seek to offer a reasonableexplanation of the options and we affirm the person’s right tochoose. Beneficence requires that we do good. This involvesestablishing a mutually trusting relationship, so it is possiblefor the person to assume that our actions will serve his orher best interests. Non-maleficence entails that as healthprofessionals we will do no harm. The justice principle asksthat we deal with people fairly, without selective favour on thebasis of wealth, sex, age, race or ability.

Health professionals have a moral obligation to offer treat-ments, but it must be respected that the decision to accept orreject the treatment arguably lies with the individual. Sometreatments, however, are considered to carry overwhelmingrisks and generally it is considered that there is an obligationnot to provide them [20]. In a number of states within Australia,the moral concerns about treating or not treating certainindividuals or conditions have been addressed by the introduc-tion of legally binding advance directives. For example, inSouth Australia where the authors practice, consenting adultsover the age of 18 years are able to specify what treatment theywould or would not find acceptable if they were consideredto be in the final phase of a terminal illness. This includes thewithholding of food and fluids, except by natural means [21].

Informed consent is a crucial ethical consideration in relationto treating or not treating a particular medical condition. Theold adage of “the doctor knows best” is still accepted by someindividuals, with particular prevalence in the older population.The doctrine of informed consent has both ethical and legalobligations. The legal approach requires that an individual beprovided with all information relevant to the consent process,prior to making the decision to accept a particular treatment.According to Johnston [22], information can only be withheldin situations where the doctor feels that disclosing thisinformation may be injurious to the person.

Cultural considerationsThe Australian population enjoys diversity in the range ofcultures that enrich our society. Respect is demonstratedthrough the consideration of the general principles that apply,with regards to ageing and death, for each cultural group.Palliative care is a Western concept and does not have universalinterpretation or application [23]. In some cultures it is notacceptable to speak of death to the person who is dying orinform them they have a life-limiting illness [13]. We must alsoaccept that the homogeneity of particular culture groups alsovaries, so we should not assume that all members of the grouphold the same values and belief systems [24]. Communicationwith people who use English as their second language may be

an issue, requiring the services of an interpreter to ensurethat cultural considerations are reflected in decision-making.Although not a uniquely cultural issue, expectations canvary greatly between the resident, family and staff and this caninterfere with the care delivered to the resident [24]. Peoplefrom some cultures find it difficult to consent to a palliativeapproach even though this is what they really want, as itappears to be in conflict with their inherent belief systems.In this situation, more detailed information and flexibility inattitude may be required. It may be more acceptable to consentto a palliative approach if the final decision is seen to be madeby the treating doctor [24].

ConclusionProviding palliative care in the context of RACFs is a complexprocess requiring a comprehensive needs based assessment andformation of a care plan that incorporates the wishes of olderpeople and allows for continuous reassessment. This assess-ment should not be diagnosis specific or prognosis based, butan individual needs based assessment. From this assessment,a conclusion can be drawn that identifies both the timing andthe level of palliative intervention required. The care plan mayconclude the need for a palliative approach to future acutemedical events or it may indicate that referral to a specialisedpalliative care team is needed. It also recognises when end-of-life (terminal) care is required. Ethical considerations areessential to prevent decisions being made that may compromisethe resident. The cultural expectations of ageing and deathshould be an integral part of the assessment process toincorporate all of an older person’s wishes. Finally, once theeducation programs around the implementation of theguidelines for a palliative approach in residential aged care areestablished, it is anticipated that these guidelines will becomeuniversally adopted. As a consequence it is expected thatpalliative care for these residents will be enhanced.

What residents of aged care facilities need when they aredeclining towards the end of life is holistic care that is compe-tent, coordinated and compassionate. They need to feel securein the knowledge that the environment in which they live is anappropriate place in which they can die [3].

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