Discussing goals of care in palliative care
When discussing goals of care for a patient with a life-limiting illness, include treatment options and likely outcomes with the patient, their family and carers. Any intervention in advanced disease must improve symptom management, patient function or comfort.
Patients vary in their response to an incurable life-limiting illness. Some patients decide to decline all medical intervention; others will agree to almost any treatment that may prolong life for even a short time, for a perceived improvement in quality of life or for the sake of family. Some patients may never have considered longer-term life goals or the implications of a life-limiting illness; they may never have considered how their values might affect their healthcare choices.
When discussing goals of care with a patient, their family and carers, clearly explain treatment options and aims to avoid misinterpretation of possible outcomes. Consider the:
- available treatment options, and which is the best or preferred option from a medical perspective
- best possible outcome of treatment, remaining honest about efficacy and not promising unattainable results. Be clear when a treatment may result in no change or a deterioration in the patient’s condition, and pay attention to language used (eg ‘response’ may be heard as ‘cure’)
- possible adverse effects or burden of proposed treatment, including need for hospitalisation, extra investigations or travel away from home
- likely outcome if no treatment is given.
A clear explanation and shared understanding of symptoms, underlying disease status, prognosis and impact on life contribute to shared decision-making and optimal patient-centred goals of care. For example, a patient with breathlessness from a recurrent malignant pleural effusion who has previously undergone drainage and pleurodesis may decide to have their breathlessness managed with an opioid rather than to have further X-rays and drainage procedures. Geographical and psychosocial (psychological, social, spiritual, existential, cultural) factors may influence the agreed goals of care. For example, a patient with dysphagia due to motor neurone disease may choose to continue to enjoy eating and drinking a normal diet even though it causes aspiration, rather than have an enteral feeding tube inserted.
Explore and address the patient’s expectations of treatment, fears and concerns regarding their disease and their future (such as fear of abandonment). If the patient is pursuing treatment for the sake of family, friends or carers, it may be necessary for a healthcare professional to facilitate a discussion that allows the patient to express their preferences to their family and renegotiate their management plan.
Expectations about treatment must be realistic. Balance symptom management against adverse effects and burdens of treatment in a way that is acceptable to the patient. For example, a patient with painful bone metastases may decide to increase their analgesic therapy rather than travel from their country town to a metropolitan radiotherapy unit. In some cases, treatment options considered to be burdensome may still be beneficial and in line with a patient’s goals of care.
Some treatments that a patient or their family consider are unlikely to be beneficial. Healthcare professionals are not required to offer these treatments, particularly if they will be burdensome or the likelihood of adverse effects is high. In such instances, discussions can be complex and require consideration of local state or territory laws; see Decision-making and ethical challenges for more information.