Palliative care in Australia is defined as a group of approaches that improves the quality of life of patients and their families facing life-limiting illness, through prevention and relief of suffering (Australian Institute of Health and Welfare [AIHW], 2018). This can be done by means of early identification, assessment and treatment of pain, other physical problems, psychological issues and spiritual distress. While delivery of palliative care is not the primary role of residential aged care facilities, they are well suited to delivery of such services. Residential aged care is designed for older people who can no longer live at their home. This kind of services provides round the clock support to older adults like the accomplishment of daily living activities and personal care (AIHW, 2018). The Victorian State Government (2019) highlights that for terminally ill patients such as cancer patients, procurement of palliative care under the residential aged care settings is of prime importance.
The following report will analyse current issues associated with delivery of palliative care in residential aged care settings. The report will start with a detailed explanation of palliative care provision in residential aged care settings. This will be followed by a critical analysis of advanced care directives in residential aged care and strategies to improve the overall provision of palliative care in residential aged care settings. The report will thus help to increase overall understanding of contemporary issues associated with aged care and appropriate strategies to improve the quality of healthcare service delivery in aged care.
With the aging population in Australia, an increasing proportion of people are older than 75 years and there has been an increase in chronic and incurable diseases ((AIHW, 2018). Thus the need for palliative care for elderly patients has increased (AIHW, 2018). In 2015 to 2016 more than 73,900 hospitalisations in Australia were for palliative care services (AIHW, 2018). Palliative care service delivery must adapt to the increasing needs.
The Australian population receive palliative care services on the basis of need and not on the prognosis (AIHW, 2018). In Australia there are almost 1.1 million cases of cancer related hospitalizations during the tenure of 2016 to 2017. Of them 3.4% (36133) of the patients were admitted to the palliative care unit. In other words it can be said that palliative care services are mainly dominated by cancer patients, with 30.7% of pancreatic cancer patients, 27.4% of lung cancer patients and 20.8% of brain cancer patients. The reasons for fast deterioration among the cancer patients and they admission to the palliative unit is stroke (4.2%) and sepsis (3.7%).
Considerable effort has been made to ensure that Australians with life-limiting illnesses are provided the level of care they need. The lowest intensity of palliative care that can be provided in any settings is delivered by secondary health care provider after being referred by primary health care providers. After this, specialist palliative care services are divided into three categories: resource level 1 is low-intensity care that can be provided with limited resources at home like relief from pain through pharmacological or non-pharmacological interventions along with social, emotional and cultural support. Level 2 specialised care is medium intensity and is of higher intensity than level 1 and generally offered in metropolitan and regional centres; and level 3 is otherwise called high-intensity care. It is advanced in comparison to level 1 and level 2 (Palliative Care Australia, 2018). It is usually provided in large regional centres like providing external supply of oxygen, nutrition through naso-gastric tube and monitoring of the vital parameters with the help of pulse oxymetry. It requires advanced setup. Primary healthcare providers (mostly general practitioners) have authority to refer patients to all the three levels of palliative care depending on the client’s needs (Palliative Care Australia, 2018).
Most older adults who are terminally ill or have chronic illness live in residential aged care. Thus palliative care in residential aged care settings holds great potential to meet increasing needs. This is mainly provided by primary healthcare providers such as general practitioners and registered nurses. Primary healthcare providers who deliver palliative care in residential aged care services are regulated under the Aged care Act of 1997 and governed by the Quality of Care Principles (AIHW, 2018). Under the schedule of specified care and services an Approved Provider of residential aged care services is mainly responsible for giving access to a palliative care team and subsequent establishment of a palliative care program. This program deals with monitoring the effectiveness and managing side effects of palliative care treatments in residential aged care residents while ensuring comfort and dignity (AIHW, 2018).
According to the Guidelines for a Palliative Approach in Residential Aged Care (2004), there are three forms of palliative care that can be delivered in residential aged care settings in Australia. The first is called the palliative approach. It is appropriate when the condition of the resident is not amenable to cure and the disease symptoms demand effective management of the symptoms. The main goal of palliative care approach is to improve the level of comfort of the resident along with functioning in order to satisfy their psychological, spiritual and social needs (Australian Government Department of Health, 2009).
The second type of palliative care services provided residential aged care setting is known as specialised palliative service provision. This involves referral to a specialised palliative care team or specialised healthcare practitioner. However, it cannot be regarded as a replacement for the palliative care approach. Rather, it requires focused, intermittent and specific input as required. The main goals of this specialised service are assessment and treatment of complex symptoms experienced by residents of the aged care with life-limiting illnesses and providing appropriate information and advice on complex issues like family issues, ethical dilemmas, psychological issues and external distress. The advice is mainly given to the aged care teamto assist them in the day-to-day management of specific patients (Australian Government Department of Health, 2009).
The third form of care is known as end-of-life or terminal care. This type of palliative care is suitable for residents who are in their final weeks or days of life. At this stage, care decisions need to be reviewed more frequently. Goals are strictly focused on physical, emotional and spiritual well-being of the resident and mental health support may alsogiven to the family members. Proper identification of when the resident is progressing towards the terminal phase assists the residential aged care team to provide appropriate care and communication. This can be difficult as there are few indicators for the identification of the stage. It becomes more difficult when the resident has more than one disease. It is the duty of the aged care team to carefully consider these factors, discuss with family members and to respect the choices of the patient and family members in the domain of treatment options. When managing this phase, it is important to provide information to family members in a proactive way and develop a partnership with the family members (Australian Government Department of Health, 2009).
Advanced Care Directives (ACDs) are an important tool for advance care planning, enabling people to plan for their own future healthcare and for personal needs if they experience difficulty communicating their needs. An advanced care planning discussion gives provision to a person’s individual values, beliefs and preferences to guide their future decision-making process and help generate a written format of the advance care plan. TheACD is a formal palliative or end-of-lifecare plan expressed in writingby an adult who is recognised as a competent individual under common law or legislation and signed in front of a solicitor. The treatment and clinical care plans written by the healthcare professionals are informed by advance care plans(ACPs) and ACDs(Crispin, Bestic&Leditshke, 2015).
Figure: Russian “doll” model of ACDs and ACPs
Source: Australian Health Ministers Advisory Council.
Several principles guide ethical practice for establishing and implementing ACDs. The core ethical principle is respecting each person’s autonomy. This principle defines that a competent person is an autonomous individual and has an equal right to make his or her own decisions in the domain of personal and health matters (Crispin, Bestic & Leditshke, 2015). Autonomy under ACDs can be implemented in different ways depending on a person’s culture, spiritual and religious beliefs and background (Crispin, Bestic & Leditshke, 2015). However, Xiao et al. (2017) highlighted that the majority of the residential aged care services lack proper support of a culturally competent or Aboriginal workforce. This creates a gap in the framing of person-centered culturally competent care plans based on clinical priority, and thereby breaches the patients’ right to autonomy.
The right to autonomy requires patients to have the ability to communicate their wishes. Kellyet al. (2018) reported that the majority of residential aged care services offering palliative care lack speech-language pathologist. A person who has special communication needs cannot be considered as a person who lacks the capacity to take part in decision making processes. Older adults receiving palliative care following a stroke or for cardiovascular problems often experience difficulty in communication. The lack of a speech-language pathologist creates a barrier to ascertaining the wishes or gap in knowledge of the person with the communication problem, thus breaching the ethical principle of autonomy under ACDs.
The concept of autonomy also gives importance to informed consent that is giving consent for a particular therapy plan. A study conducted by Tattersall (2017) stated that at the time of the informed consent it is never possible for the palliative care professionals to discuss all the potential endpoints of the therapy. Such endpoints could include a nil-by-mouth recommendation, the requirement for tube feeding or assessment through fluoroscopy or endoscopy. It can be difficult to meet the ethical principle of autonomy during the informed consent process prior to conducting a clinical assessment. The list of possible outcomes could be very long and overwhelming the patient.
ACDs generally give rights to a family member or other competent person to support and make a decision on behalf of the residual decision maker when he or she is found incompetent. This right is opted by giving power of attorney. The decision of the substitute decision maker should only be based on the interests of the client (Crispin, Bestic & Leditshke, 2015). It can be difficult to ascertain whether the primary care receiver is incompetent to take an active part in the decision-making process,especially when patients suffer from multiple illnesses (Kolva et al., 2014). Clinicians working with terminally ill patients often fail to adequately assess the capacity of clients to take part in the decision-making process (Kolva et al., 2014).The underlying reason is generally lack of proper knowledge of the clinical to access the level of decision-making skills of the service users (Kolva et al., 2014). The residential care system also lacks a comprehensive approach to helping the healthcare professionals in their responsibility to balance the respect of the patient autonomy and their responsibility to refrain from harming patients resulting from the impaired decision-making capacity (Kolva et al., 2014).
Under ACDs, clients receiving palliative care may refuse to avail certain health-related interventions, and such circumstances must be monitored carefully (Crispin, Bestic & Leditshke, 2015). In some instances, refusal of palliative care therapy has been found to decrease the overall quality of life and well-being of the individuals. For example, patients with metastatic non-small cell cancer (NSLC) refusing to undertake the palliative therapy in residential aged care settings have been found to have poor survival (Stavas et al., 2015). The refusal of palliative care therapy triggers the requirement of integrating palliative care services and thereby hindering the intellectual harmony of both the patient and the family members (Stavas et al., 2015).
Education of staff working in residential aged care settings
Improving the quality of life of the people in palliative care demands a proper understanding of the client’s needs in a diverse range. Cancer is one of the prevalent illnesses managed by palliative care, followed by neurodegenerative conditions such as dementia, cardiovascular complications, and musculoskeletal diseases. The median length of stay in palliative care provides an important context to the level of care along with the needs of the person. In other words, it can support people in the residential palliative care systemto have a greater degree of needs and thus constant education and training of the healthcare professionals and the nursing staffs is important (Butler, 2017). Brownie and Nancarrow (2013) have stated that culturally competent nursing workforce can be produced under the promotion of the trans cultural nursing practice and at the same time creating provision for the recruitment of the Aboriginal and CALD nursing workforce. A culturally competent team in aged care helps to meet the psychological needs of the older people that are culturallyconsistent. A culturally and linguistically diverse team promoted effective psychological interactions and thereby facilitating the overall provision of care(Xiao et al., 2017). A culturally competent workforce will help to implement a person-centered intervention that is multifactorial. The main factors of this intervention will include creating opportunities for social stimulation and interaction, environmental enhancement and empowerment of the patient (Brownie &Nancarrow, 2013).
Updating residents and families about ACPs before and at the time of admission
The intended progress and potential outcomes of palliative care therapy in the residential aged care environment must be discussed with patients and family members in a periodic manner. This process must be commenced by conducting an interactive session with the families and the patients (Aasmul, Husebo & Flo, 2018). In order to initiate communication with the patients and their family members, healthcare professionals must be trained in the domain of interpersonal communication skills or effective communication skills. This includes both verbal and non-verbal communication skills. Use of the verbal communication skills like active listening and maintenance of proper body language among the health care staffs help to promote the patient engagement and thereby helping to develop therapeutic relationships(Harris et al., 2016). The development of therapeutic relationships besides providing help to access the clinical priority also increases the degree of therapy acceptance among the patients. This particular on effective communication skillswill benefitthe healthcare professionals to overcome the fear of initiating the communication in the domain of the end-of-life issues and thus preventing unwanted delay(Greer et al., 2016). Moreover, Aasmul, Husebo, and Flo (2018) assured for proper implementation of the nursing leadership in order to encourage the nursing professionals to indulge in effective communication with the patients and their family members.
Topics that must be discussed
The topics of conversation with the patients and the family members must encompass the domain of living-well and raise the issues of life-prolonging treatment without focusing on any specific type of treatment. It is also recommended to engage the patient’s general practitioner in the conversation with the family members in the ACP (Towsley, Hirschman & Madden, 2015).
Proper patient documents
Appropriate and accurate patient documentation reduces the risk of errors in therapy delivery and also helps in the development of culturally competent and person-centered care plans (Detwiller & Petillion, 2014). Residential aged care services must document the name of the substitute decision maker where applicable, along with the current state of health of the patient, the cultural and spiritual values and beliefs and wishes for managing future health conditions. Documentation must also include the level of the preferred treatment if indicated by the general practitioner, signed by the patients and family members in the presence of the doctors. In addition to appropriate record keeping, an effective information transfer system must also be present in the residential aged care setup to enable communication of the advance care planning information to the other healthcare providers (Kerr & McKinlay, 2013). Proper documentation of the patient’s information and effective navigation of that information within the healthcare team can be achieved using electronic healthcare records (EHRs) along with training of the nursing professionals to handle the data excavating in EHRs while ensuring privacy and confidentiality (Holup et al., 2013).
Conclusion
Thus from the above discussion, it can be concluded that the palliative care in residential care settings is an important aspect of palliative care delivery. The main goal of palliative care in residential aged care settings is to improve the overall quality of life of the individuals by reducing the degree of pain and suffering. It is the duty of healthcare professionals to provide palliative care under the strict ethical guidelines of patient autonomy and informed consent. However, inadequate training of healthcare staff in residential aged care settings creates a barrier in implementing person-centered approaches to assessment of patient competency to provide informed consent. In order to improve the overall quality of care provision, healthcare professionals working in residential aged care settings should be trained in cultural competency and more Aboriginal healthcare workers should be recruited. The installation of EHRs will also help to increase the overall process of documentation and help to work as per the patients’ cultural, spiritual and clinical needs
References
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