Introduction
Goals of care (GoC) help to align current health care treatment decisions to a person’s goals, values and preferences within the clinical context. While GoC are related to advance directives (AD) and advance care plans (ACP), they are different. Advance care planning involves anticipatory conversations that can occur at any age or stage of health and outline a person’s preferences about health and care outcomes for the future. Advance care planning may result in the production of an advance directive. Goals of care are agreed between the person, their family, carers and healthcare or multidisciplinary team and are based on the current clinical context. [1]
Goal setting in palliative care is complex and challenging and should be multidisciplinary and flexible in nature. It requires the person to have a clear understanding of their medical condition to enable open, honest and realistic discussion around end-of-life care. A person’s goals are not always restricted to medical care and will change over time, particularly as the person enters the terminal phase. [2]
Quality Statement
Included in this evidence synthesis are seventeen systematic reviews [1-17] including four integrative reviews [5,8,13,18], a narrative review [11], a structured literature review. [2] Also included are three guidelines [19-21], a systematic guideline review and expert consensus [22] and one prevention and treatment protocol. [23] Only two reviews focussed on palliative care for older people in the residential care setting. [6,17] Two systematic reviews specific to dementia [16,17] however, as the search criteria did not specify dementia this is not an exhaustive list of GoC evidence on dementia. Overall, the quality of the evidence is mixed with certain studies of acceptable to high quality with appropriate searches and methods for extraction and analysis.
Evidence Synthesis
Goal setting in palliative care
Ambiguity has existed around the meaning and use of the term goals of care, and this has limited its utility and impact to improve care. However, a recent literature review of people with serious life-limiting illness, found a marked increase in the use and application of the term GoC and derived the following consensus based operational definition to guide conversations: ‘GoC are the overarching aim of medical care’. They are informed by a person’s underlying values and priorities, which are established within the existing clinical context, and used to guide decisions about the use of or limitation(s) on specific medical interventions. [1] However, there is no consensus on the process or components of GoC conversations, or on the tools to be used to inform and guide these discussions. [15] There is clear agreement that goals should be person-centred. [2] There is also agreement that goal setting is complex, challenging and should be multidisciplinary and flexible in nature. [2,4,14] It is recognised that in palliative care, goal setting is not a linear process, and that goals need to be redefined in lines with the progress of the condition or disease, therefore regular review and adaptation are important. [2] Complexity can also be increased if the person does not have a clear understanding of their condition and if family members and/or healthcare providers are not in agreeance with the goals set. [2]
The concept of hope underpins goal setting. The process of setting and working towards specific goals is seen as important in that achieving certain goals is satisfying and significant. Conversely, recognising the inability to achieve goals is an important part of adapting to illness if a person is well-supported. As illness progresses, the emphasis of goal setting can change from physical independence to leaving a legacy. [2]
Goal setting can also be seen as a way for healthcare workers to help the person to connect with life ‘beyond illness’. [2]
Interventions for palliative care for residents of residential aged care facilities (RACFs)
Hall et al. [6] found only three suitable studies (2 RCTs and 1 controlled before-and-after study, total of 735 participants), all from the USA. The studies were heterogeneous, graded as poor-quality with several sources of bias, and provided little evidence that interventions improve the outcomes of palliative care for older people in residential aged care facilities (RACFs). Only one study assessed goals of care of residents of aged care facilities in the assessment of palliative care interventions. [6]
Communication and communication tools in serious illness, palliative care and end-of-life care
Bernacki and Block [4] describe the research around communication practices in serious illness and highlighted the factors which underpin deficiencies in this important area of health care. This review notes that palliative care specialists tend to explore non-medical issues and to be patient-centred in their discussions with patients, more so than other medical specialists. Bennett et al. [18] also identified these deficiencies and noted clinicians may face workflow constraints and lack of standardised protocols or education to initiate discussions. Consequently, this can have a bilateral impact with both clinicians and the person and their families waiting on the other to initiate conversations. A need for adequate training of medical staff with these types of discussions is required. [4]
The research indicates that the person and their families do want open and honest information presented to them, and that discussions of goals of care and end-of-life care do not increase levels of anxiety, depression or feelings of hopelessness for the person or their families. In addition, timely discussions of goals of care and end-of-life care can minimise the hesitation, stress or guilt felt by surrogate decision-makers. This was found to be particularly true in the case of surrogate decision-makers for people with dementia, with significant burden often associated with this role. [16]
Two included studies suggested that ongoing communications in palliative care may play a role in reducing hospitalisations for seriously ill people; this may have cost but also quality-of-life implications. These reviews excluded residential aged care facilities and so certain considerations pertinent to this type of care were not addressed. [4,18]
Communication of goals of care may be under-addressed because of the ambiguity of which health care professional should be responsible for this, a primary care practitioner or a specialist. [4] Kim et al. [9] suggested that long-standing and strong rapport of the person with their primary care provider may be important in the timely instigation of and the quality of discussions of goals of care. Bennett and O’Conner-Von [18] suggested nurses can also play a key role in instigating and maintaining ongoing GoC conversations due to their proximity to and relationship with the person and their family.
Two systematic reviews [3,10] investigated the use of structured tools for end-of-life and shared decision-making. The use of tools such as decision aids or communication tools are a way to improve understanding and knowledge of treatment choices and assist decision making; the aim is to increase the likelihood that these choices accurately reflect their preferences. Austin et al. [3] found limited yet moderate to high-quality evidence which demonstrated decision aids had the clinical potential to improve a person’s knowledge and understanding enhancing decision making in serious illness. Oczkowski et al. [10] with a focus on the intensive care unit (ICU) setting, found very low-quality evidence that the use of structured communication tools increased the number of documented goals-of-care discussions.
The role of interpreters in discussions of goals of care for palliative care and end-of-life care
Silva et al. [12] sought to determine how professional medical interpreters influence the delivery of palliative care services to people with limited English proficiency (LEP). It found only 10 includable studies, six of which included the presence of an interpreter in discussions of goals of care. The review notes that ad hoc interpreters including family members are often used in consultations which discussed prognosis, diagnosis and symptom management. This study highlights the importance of a professional interpreters in palliative care as most of the included studies indicated an improvement in quality of care when a trained interpreter was used, and that best-practice may include meetings between professional interpreters and clinicians to prepare for the person’s consultation or family meeting. Clinician-interpreter preparatory meetings prepare the medical and care content but also the linguistic and cultural sensitivities of patient-clinician interactions. Outcomes and quality of communications can be improved when clinicians understand the role and potential benefits of the use of a trained interpreter. [12]
Clinical considerations of goals of care in palliative care
Inherent in the definition of palliative care is that the goals of care are or have become the optimisation of comfort and function, and the relief of symptoms without the hastening or postponing of a person’s death. [13,20,21] A clear understanding of the wishes of a person and their family are essential to the successful establishment and review of goals of care as part of a management plan. [19-21,23] These goals of care should be realistic and agreed and as the illness progresses will need to be reviewed. [19-21,23] Clear documentation is essential. [20,21]
Care planning and clear, respectful and empathetic communication with people, their family and carers contribute positively to the sense of dignity and the quality of life of people undergoing palliative care. [5,8,11,20,21]
Important clinical aspects of goals of care are:
- general care planning can be done alongside the process of advance care planning and should include a clear understanding of the wishes of a person and their family and/or their surrogate decision-maker
- effectively communicating a care plan includes an explanation of the different treatment options, the likely or best outcomes, the possible adverse effects, the likely outcome of no treatment being given. It is important that the care plan be communicated to relevant healthcare providers and the person, their family and carers which can help them to be prepared and know what to expect as the situation changes.
- medication review and management – the person’s life expectancy, time until benefit, adverse drug effects, drug reactions, should all be considered.
Goal setting for older adults with multimorbidity
The number of coexisting chronic health conditions (comorbidity/multimorbidity) and the proportion of the person’s suffering from multimorbidity increases with age. [14] Multimorbidity is associated with elevated risk of death, disability, poor functional status, poor quality of life, and adverse drug events. However, people can often live for months or even years with multimorbidity, and as a result, end-of-life (EoL) planning, prognosis and treatment is often complex in nature. [18] An individualised management plan or a person centred goal approach is increasingly recognised in the management of older adults with multimorbidity. [14] Collaborative goal setting is ‘a process by which health care professionals and the person agrees on a health-related goal’. [14]p.2 A systematic review by Vermunt et al. [14] demonstrates that collaborative goal setting with elderly people with chronic disease and multimorbidity seems to improve the application of goal setting and the numbers of agreed goals and advance directives but more research is needed to fully understand its role, benefits and applicability. [14]
A recent systematic review by Bennett and O’Conner-Von [18] found GoC communication was enhanced by two specific modes of communication: Patient-Clinician GoC Communication and Patient GoC Decision Aids, in particular electronic video education tools. Both showed significant improvement in the person’s comprehension and communication of EoL treatment preferences and were effective and efficient for older people. Specific tools can also be used to recognise multimorbidity. However, Bennett and O’Conner-Von [18] note that measurement of the effectiveness of these communication interventions were not reflective of the usual timespan of patient care (studies were up to 6 weeks), and both minority and rural populations were underrepresented. Conversely, Muth et al. [22] systematically reviewed guidelines for the clinical management of older people with multimorbidity and recommended caution in the use of decision aids developed for condition-specific single chronic diseases.
Goals of care for people with advanced dementia
Timing of GoC discussions is important for people diagnosed with dementia. Early discussion enables the person to state their wishes for the later stages of their condition when they may no longer have the competency or capacity to speak for themselves. [17] Substitute decision-makers progressively play an active role in GoC and end of life discussions as people enter late or end stage dementia. An emphasis should be placed on educating and supporting the substitute decision maker, so they are equipped to manage the issues that arise. [16] Greater concordance between the clinician and families has been shown when GoC and EoL discussions involve palliative care consultants. [17]
Evidence Gaps
- Thorough definition of the antecedents, components and modifiers of GoC conversations.
- While recognised as important, there is little agreement on what goal setting in palliative care is, what it does, or how it should be delivered. The overall quality of research regarding goal setting in palliative care is poor. Goal setting for older people in palliative care seems not to be specifically addressed in the literature. There is a need for high-quality research particularly including a core outcome measure of the key goals of palliative care in residential aged care facilities (RACFs). The authors of one systematic review [6] recommend that those conducting such research should use an instrument of measurement that is simple and quick for residents or their proxies to complete.
- Research of high-quality is needed to strengthen our understanding of the benefits of the early initiation of discussions of goals of care and end-of-life decisions. These benefits could be measured against person centred outcomes and satisfaction, clinician time investment in care, costs to the person and to the aged care system and use of relevant aged care / palliative care settings.
- Often training for discussions of goals of care is seen as inadequate by medical staff; future research could establish the characteristics of training (pre-vocational and post-vocational) for doctors and health professionals which build competence and confidence for them to initiate and conduct these discussions.
- Research of high-quality is needed to evaluate the use of tools which have been developed to assist people and their families establish goals of care, end-of-life decisions and shared decisions. A particular focus would be the alignment or not of the person’s wishes and care received in palliative care or end-of-life care, and goals of care and satisfaction of care.
- The evidence to support the improvement in quality of care when a trained interpreter is used is sparse and needs to be strengthened by further research. The amount and quality of training of interpreters, and interpreter and clinician behaviours during end-of-life discussions and how these influence the person’s and family’s satisfaction, need also to be better understood.
Page updated 28 June 2021