Introduction
Goals of care are the aims for a person’s care, as agreed between him/her, his/her family, carers and healthcare team. A person’s goals of care are not always restricted to medical care. Goals of care in palliative care will change over time, particularly as the person enters the terminal phase.
Goal setting involves negotiation between a person and health care professional or a multidisciplinary team about an agreed target which will be worked towards. Goal setting in palliative care is complex, challenging and should be multidisciplinary and flexible in nature.
Quality Statement
Included in this evidence synthesis are thirteen systematic reviews [1-13] including two integrative reviews, [1-3] a narrative review [4] and a structured review; [5] three guidelines; [14-16] and one prevention and treatment protocol. [17] Only one review focussed on palliative care for older people in the residential care setting. [12] 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
Boa et al. [5] of patient-centred goal setting in palliative care, concluded that even though there is no established definition of goal setting in palliative care, there was clear agreement that goals should be personal. There was also agreement that goal setting is complex, challenging and should be multidisciplinary and flexible in nature. It was 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. Complexity can also be increased if family members and/or healthcare providers are not in agreeance with the goals set. [5]
The concept of hope underpins goal setting. The process of setting and working towards specific goals was 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. [5]
Goal setting was also seen as a way for healthcare workers to help patients to connect with life ‘beyond illness’. [5]
Interventions for palliative care for residents of residential aged care facilities (RACFs)
Hall et al. [12] 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. [12]
Communication and communication tools in serious illness / palliative care / end-of-life care
Bernacki and Block [7] 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. A need for adequate training of medical staff with these types of discussions was noted. The research indicates that patients and 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 patients 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. One included study suggested that ongoing communications in palliative care may play a role in reducing hospitalisations for seriously ill patients; this may have cost but also quality-of-life implications. This review excluded residential aged care facilities and so certain considerations pertinent to this type of care were not addressed.
This review also highlighted that 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. Kim et al. [9] suggested that long-standing and strong rapport of patients with their primary care provider may be important in the timely instigation of and the quality of discussions of goals of care which then, in turn, can reduce out-of-hospital deaths, improve care consistent with a patient’s goals and even lowered healthcare costs.
Two systematic reviews [6,10] investigated communication tools for end-of-life and shared decision-making. Austin et al. [6] found limited yet moderate- to high-quality evidence which demonstrated the clinical potential to improve patient engagement with tools to enhance decision making in serious illness. Oczkowski et al., [10] with a focus 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 / palliative care/ end-of-life care
Silva et al. [11] sought to determine how professional medical interpreters influence the delivery of palliative care services to limited English proficiency (LEP) patients. 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 a patient 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. [11]
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. [1,14,15] A clear understanding of the wishes of a person and his/her family are essential to the successful establishment and review of goals of care as part of a management plan. [14-17] These goals of care should be realistic and agreed and as the illness progresses will need to be reviewed. [14-17] Clear documentation is essential. [14,15]
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. [2-4,14,15]
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 his/her family and/or his/her surrogate decision-maker
- 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, his/her family and carers can help them to be prepared and know what to expect as the situation changes.
- medication review and management – the patient’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 (comorbidities) and the proportion of patients suffering from multimorbidity increase with age. [13] Multimorbidity is associated with elevated risk of death, disability, poor functional status, poor quality of life, and adverse drug events. An individualised management plan or a patient-goal approach is increasingly recognised in the management of older adults with comorbidities. [13] Collaborative goal setting, ‘a process by which health care professionals and patients agree on a health-related goal’, is an emerging concept. A systematic review by Vermunt et al. [13] demonstrates that collaborative goal setting with elderly patients 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. [13]
Gaps in the evidence
- Emerging work on medical goals of care exists but not at the level of a systematic review.
- 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 [12] 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 for patient 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 patient’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 patient and family satisfaction, need also to be better understood.
Page updated 09 January 2018