Palliative care services are designed to improve the life of patient with progressive disease. People receiving palliative care have illness that has no prospect of cure. As per the World Health Organisation, palliative care is a care given to patient suffering from life threatening illness to improve their quality of life by preventing and providing relief from sufferings by early recognition , assessment and treatment of pain and psychological, physical and spiritual problem (Zimmermann et al., 2014). Palliative care is delivered in various settings including paediatric services, neonatal units, acute hospitals, residential aged care services, and community settings such as home care. Specialist services operate from community based services, inpatient and hospice care (Parker et al., 2013). The paper deals with Palliative approach in end of life care in residential aged care at a national and international level. The purpose of the analytical paper is to demonstrate the concept of palliative care and demonstrate the synthesis of this approach with evidence about its application in policy and practice. The paper is the critique on how palliative approach is implemented in practice for older people. The paper considers the policies around advance care directives and the models of funding for residential aged care. It includes the discussion of issues in palliative care and its impact.
The term palliative comes from the Latin “palliatus” which means hidden or covered with cloak and it refers to “relieving without curing” (Zimmermann et al., 2014). Palliative care is provided to patient suffering from active and progressive disease that has no prospect of care. It includes the later stages of cancer, non –malignant conditions such as heart failure, dementia, motor neurone disease, respiratory failure, renal failure, Parkinson’s disease, and muscular dystrophy among others. This approach affirms life; it provides pain relief and relief from other distressing symptoms. In this approach, dying is regarded as normal process and efforts are made to neither hasten nor prolong death (Parker et al., 2013). In some countries, a distinction is made between palliative care and hospice care. The two approaches have similar philosophy. In US, the distinction is operative and the two aspects differ in respect to the payment system and the location of the services. However, in UK both the hospice and the non-hospice team of palliative care deliver care to those with any stage of illness and is not curable. However, many professionals are non-specialist in heath care and yet apply the principles of palliative care in their routine work (Free, 2018). In Australia, palliative approach is recognised to be important and considered it a core competency for all the health professionals (Broad et al., 2013).
In an individual’s journey through life, culture constitutes fundamental part. Culture along with spirituality plays a significant role in a person’s life. It has been found in many cases that health beliefs are strongly tied to spiritual and religious affiliations of an individual as well as to his or her cultural background (Mazanec & Panke, 2015). Therefore, palliative care incorporates the cultural, spiritual and psychological aspects to help a patient live actively until death. Palliative care also addresses the family’s needs and wants such as coping up with bereavement (Free, 2018).
The end of life care is provided to the patients in last months or years of their life. It includes people whose death is imminent such as those with advanced stage of cancer, stroke, dementia and patients who have experienced a catastrophic event in life. The goal of the care is to help a person die with dignity and to assist a dying person to live as well as possible until death. While providing care the patient’s wishes, preferences, and perspectives of the family members are taken into account. Such patients are entitled to high quality of care and are allowed to express their wishes to receive care at home, hospice, care homes, or hospitals and depending on need and preferences (Rosenwax et al. 2016). The hospital doctors, nurses, community staff, general practioners, counsellors, social care staff, physiotherapists, occupational therapists and hospice staff provides the end of life care. General Practioners are responsible for overall care if the patient with the end of life receives care at home. Palliative care is included in the end of life care in case where pain and distressing symptoms of the illness are curable. This approach is included to provide comfortability to the patients (Virdun et al., 2015).
The residential aged care facilities at national and international level are designed in a manner that supports the medical professionals to access the files of the patients and allow the palliative approach to be incorporated at the earliest opportunity. The residential aged care facilities best supports the palliative approach, which facilitates open communication system between the patients and health care professionals of the aged care team (Tuckett et al., 2015). These facilities ensure that skilled staff is recruited that can provide quality care at all hours. Staff with right skill mix is needed to decrease the transfer of patients to acute care setting and potential distress to both the aged person and the family. The role of the aged care staff is to engage in continual professional development and education about the palliative approach.
The palliative approach in the aged care facility, includes various elements. It includes incorporating the principle of autonomy, dignity, respect and comfort. It involves the principles of having honest and open communication with the aged adults in regards to the current conditions and the treatment options. It is mandatory for the palliative care team to provide choice to the older adults in available evidence based treatment methods. Palliative approach to the end of life care involves effective management of the distressing symptoms and pain relief. It includes provision of people with the type of access they wish to have and involves fulfilment of needs considering the cultural and spiritual wishes (Mazanec & Panke, 2015). The palliative care team works hard to improve the quality of life of patient with life limiting illness by providing care in conjunction with other therapies that may prolong the life of the patient. However, the goal is not to hasten or postpone the death (Free, 2018). Spiritual considerations involve providing people with resources such as pastoral care workers, meditative music, aromatherapy resources, objects of personal significance, and photos of family members that can provide relief and comfort (López-Sierra & Rodríguez-Sánchez, 2015).
According to Parker et al. (2013) the care for aged people with life limiting illness in residential aged care facility is directed by the medical practioners. The role of the practioners is to prescribe medications or treatments and make effective decision related to treatment. These practioners play a central role in this process. The practioner must be clear about the difference between the goals of palliative and acute care. Therefore, the medical practioner must ensure that the aged person at the end of life and those with chronic illnesses receives palliative care and appropriate services. It is essential to provide care based on the need and comfort rather than being cure focused. However, appropriate care does not indicate sending the older patient to hospital. Further, Tuckett et al. (2014) argued that the palliative approach should limit interventions that are distressing to the patient wherever possible even if the symptoms can be cured such as in-situ. However, some hospital visits may be necessary to provide active comfort. A greater emphasis is laid on providing relief to distressing symptoms using positive approach and by taking into account cultural and spiritual needs.
Planning and communication that is oriented to cultural and spiritual background of the care user is the vital part of palliative approach in end of life care and in aged care facilities The practioners must make decisions by having open dialogue with the older adults in the aged care and by taking consent from the patient’s family members. It is essential that the patients and their loved ones understand the various service options, treatment modalities and it realistic outcomes. It is the only effective methods that will allow them make informed choices (Keeley, 2016). In some cases where an older adult having illness with unpredictable courses may create a situation where is it is difficult to make effective communication. In such cases collaboration is needed between residential aged care services, primary care providers, disease specific organisations, and specialist palliative care services for discussion and communication (Petriwskyj et al., 2014).
In Australia, the Palliative approach in the residential aged care incorporates the advance care planning or ACP. ACP gives opportunity to the patient’s relatives to make choices or decisions on behalf of the patients such as how they want to live until they die. It may be applicable in case patient has dementia where one is not in the state to make decisions related to their life. ACP guides the doctors to respect the wishes of relatives related to care, health insurance. ACP onsets if the estimated prognosis is of greater than six months and patients are reviewed every six months. However, it is not a single event of communicating and documenting wishes, rather an ongoing process of discussion and is commenced soon after resident’s admission (Street et al., 2015).
Even though people are, clear about the concept of the end of life care there is difference in their preferences. Advance care directives or ACD is the process of allowing people to plan ahead in case of decision making considering cultural parameters. ACD is the systematic approach of making decision while respecting the previously expressed wishes of the person. In both national and international level, the residential aged care services are making ACD as a part of routine care for appropriate transfer of information between the health care professionals, clinicians and the residential aged care facilities. In this system, the future decision-making is based on the person’s values, beliefs and preferences (Crispin, Bestic, & Leditshke, 2015). ACD is the formal advance care plan expressed in writing that is agreed by both the individual and the recognised by the common legislation. The ACDs inform the plans related to the clinical care treatment and resuscitation (Petriwskyj et al., 2014).
According to Tuckett et al. (2014) palliative care case conferences and use of an end of life care pathway are the key processes will be successful only if there exist an ongoing and open communication between all the members of the residential care team. Palliative care case conferences are initiated if the estimated prognosis is of less than six months and patients are reviewed monthly. End of life care pathway is initiated when estimated prognosis is of less than 1 week and patients are reviewed daily. The care facilitators should be aware of different prognosis of each member. In palliative care conferences, a meeting is held between the care team and the residents including their families. The meeting comprises of the issues and the current condition of the residents and identify the clear goals of care (Reymond, 2014). In end of life care pathway a clinical document guides the delivery of high quality care in terminal phase of illness. In case of improvement he/she is taken out off the end of life care. The normal care routine is resumed (Reymond et al., 2016).
The primary challenge in palliative approach to residential aged care facilities is the ethical decision-making and legal obligations. The main ethical issues are related to the advance care planning and documentation, burdensome treatment, poor quality of life and pain management at the end of life, issues related to treatment adherence, hydration and nutrition. Family members frequently report difficulty in making decisions related to patient’s request to die and resuscitation. The care providers have to make decisions based on the principles of autonomy, beneficence, non-maleficence and justice (McLennan et al., 2015).
In countries like Australia, which contain diverse population it, is often difficult to maintain autonomy in respect to diverse religious, spiritual beliefs. For instance, Torres Strait Islanders and Aboriginals have different beliefs than the Non Aboriginal Australians. The perceptions about what constitutes “quality of life” are different for different communities. Consequently, the substitute decision maker of the patient may accept or refuse the intervention in a valid ACD (Stokoe et al., 2015). In most cases it is difficult for the care providers to remember different customs that show respect and different reactions to death and dying. In several incidents, Language is key barrier. It is assumed that everyone understands and speaks English. Therefore, interpreter and translator services are an important part of palliative approach. Lack of these services also leads to failure to meet the spiritual aspects of palliative care and legal issues which in turn delays the discussions until death is imminent. Lack of skilled staff and knowledge on importance of considering the person’s values, goals, delays informed choices and advance care planning documentation (Connolly et al., 2014).
There are various legislations enacted in Australia covering ACD with the name and the nature of the legislated instruments for each ACD component (Crispin et al., 2015). However, the key issues are change of people’s preferences over time, which may not be updated in ACD. Sometimes the medical directions, which are uinformed, are too specific to be changed during medical treatment or are too non-specific to guide decision-making. In different countries the advance care policy and best practice principles are not consistent. There is inappropriate documentation and transfer of information triggers lawsuits (Broad et al., 2015). Several legislations are introduced in UK to provide framework for administration of medicines without individual prescription.
Residential aged care face difficulties in administrating palliative care due to residents having dementia and or communication difficulties. The permanent residents are appraised as requiring palliative care under Australian aged care funding instrument. The proportion of funding increases with the increase in age of the resident. These systems have undergone several reforms. The government of Australia has developed guidelines for a palliative approach, which addresses the inequities of service in residential aged care centres. There is a difference in funding between these centres and the multi-purpose services which influences the delivery of palliative and end of life care in residential care facilities. In these facilities the funding is based on individual needs whereas in the multi-purpose service units the funding is based on the agreed number of beds to provide care which gives these services a consolidated revenue. Thus, the residential classification scale is the major issue in the delivering palliative care. In most cases palliative care inpatients referred to residential aged care die before discharge and hence there is a need of careful placement. In certain circumstances, the some amount is deducted in relation to the repayment of capital grants. Inspite of capital grants in regional and rural areas residential care is not accessed due to geographic location, lack of non grant funding to undertake the capital work and low means residents such as defined in Aged care Act. The rising demand for aged care services is an added burden (Sung et al., 2014).
Conclusion
Palliative approach is truly a holistic care delivered to patients with life threatening illness with no prospects to cure. It incorporates psychological, spiritual and cultural needs while addressing the patient’s problems. It is evident from the literature review that in near future the needs of the palliative care is likely to increase. The services should align with the WHO recommendations. There is a need of making further assessments of unsatisfied requirements and other diagnoses in the need of palliative care. The ethical and legal obligation are inevitable if the palliative approach in residential aged care facilities do not incorporate cultural, spiritual and religious values and beliefs of the people. There is a need of clear preferences and it must be followed in practice to prevent loss of decision making capacity. There is a need of systematic approach to ACD. Planning and communication is essential in any ACD to ensure that the care services are congruent with the patients’ preferences and demands.
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