Patient autonomy, dignity and choice

Key messages

Evidence summary

Autonomy and patient-centred care

Autonomy is a fundamental principle in palliative care. It means allowing patients to make decisions about their treatment and care based on their needs, values and preferences. [1-3] Dignity encompasses the idea that everyone deserves to be treated with respect, fairness and compassion. [2] Recognising the intrinsic worth and respect for individuals, regardless of their circumstances, is essential to maintaining autonomy, dignity and person-centred care. [2,3] The presence of autonomy influences how individuals perceive and experience dignity, especially in the face of illness. [4] Those who feel a strong sense of autonomy maintain a sense of dignity; while those lacking autonomy may perceive their care as undignified.

Healthcare professionals should respect and support patients’ autonomy by providing them with relevant information, ensuring their understanding, and involving them in the decision-making processes. [2] Loss of autonomy impacts people’s end-of-life decision making, and unmet needs in palliative care can undermine their dignity and quality of life. [1]

People with a desire to die conceptualise their loss of autonomy due to the following factors:

1. Loss of physical functioning.
2. Loss of internal control and self-efficacy.
3. Loss of control over one’s life and self-determination. [1]

Healthcare professionals highlight the importance of empathising with the patient to improve their own understanding of patient needs, by supporting active listening, and effective communication. [5] They also recommend ensuring a consistent care plan over time, recognising and respecting patients’ experiences and emotions, and dedicating the necessary time to provide comprehensive and personalised care that accounts for each patient’s individual needs. [4] Common approaches for enhancing patient centred care and autonomy include:

• Implementing targeted training, education, and communication tools designed to build staff capability in communication at the end-of-life
• Identifying patient needs
• Promoting patient involvement in decision-making
• Strengthening the patient-clinician relationship. [3]

Decision making

It is important that all treatment and alternative care options are presented to patients, to enable them to make a truly informed decision, to promote their autonomy, dignity and choice. [6] Shared decision making is the process by which patients and healthcare professionals collaborate to reach a treatment decision informed by evidence and the patient’s goals of care. [7] Patients who have passive involvement in decisions about their own treatment report poorer health and quality outcomes. [7] However, it can also be harmful to fully disclose information to patients when this is not desired. Personal circumstances including health status, social environment and preferences for quality of life towards the end of life need to be carefully considered and incorporated into treatment and care decisions. [6] Decision support tools can be used to provide information about the risks and benefits of treatments and enable patients to reflect on and communicate their preferences to healthcare professionals. [6] Communication tools also support patients to ask relevant questions in healthcare settings that can enhance their understanding of treatment and facilitate their involvement in decision making. [6] Decision making is covered in more detail in other clinical evidence summaries, communication approaches and advance care planning.

Desire to die and hastening death

At the end of life, some patients may perceive autonomy as a determining factor of dignity, emphasising the desire to control the dying process through self-determination and a wish to hasten their death. [8] Patients often make critical decisions about their trajectory of care while experiencing an element of suffering. This can unduly influence their perceptions of autonomy. [8] Providing adequate pain relief, palliative care and psychological support to alleviate unnecessary suffering and improve the quality of life, allows patients the freedom to express their autonomy in an unencumbered way. [2]

Nevertheless, palliative care patients sometimes express a wish to hasten death, and are often thought to want this because they are experiencing a loss of autonomy. [1,2] Accordingly, the main motivations and factors behind these requests appear to be:

• Physical discomfort
• Unbearable psychological suffering
• Feeling a burden to others
• Loss of dignity and autonomy
• Demoralisation and psychological distress
• Major depressive illness
• Little social support
• Disappointment with life experiences
• Tiredness of life
• Lack of medical options
• Religious, spiritual and cultural beliefs. [2]

Euthanasia is a death hastening practice that was first legalised in the Netherlands in 2001. It has since expanded to other countries where it is called by different names and adopts a variety of practices. [8] Within Australia, Voluntary Assisted Dying (VAD) terminology evolved in recent years following inquiries and parliamentary debates of laws enabling a terminally ill person to seek medical assistance to die. [9] However, it is important to note, VAD is not considered within Australia’s scope of palliative care practice, and instead sits separately. VAD refers to the assistance provided to a person by a health practitioner to end their life. It includes:

• Self-administration, where the person takes the VAD medication themselves (also known as physician-assisted dying); and
• Practitioner administration, where the person is given the medication by a doctor or nurse in some circumstances (also known as voluntary euthanasia). [9]

Proponents of euthanasia base their claims on self-determination, fear of futile care and the importance of the quality of life versus its quantity. [10] Comparatively, opponents argue a dignified death is about providing appropriate and high-quality end-of-life care, not hastening death, and external pressure may unduly influence a person’s request to access euthanasia. [10] Predictors of international euthanasia endorsement include younger age, lower religiosity, higher education and higher socioeconomic status. [8,10] Cancer is the most frequently reported diagnosis behind euthanasia requests in individuals aged 60 years and older. [8] Palliative sedation is an alternative treatment practiced in Australia and internationally, which employs the controlled use of medications to induce decreased awareness, alleviating intractable suffering. [11] The medication dosage is proportional to relieve suffering, and can be administered intermittently or continuously, with sedation levels varying from light to deep based on the patient’s comfort needs. [11] Patient consent through shared decision making is important to permit this approach, and should be sought early in the disease process, involving trained palliative care professionals. [11]

Equity and Access

Navigating the palliative care needs of culturally and linguistically diverse (CALD) populations can sometimes be challenging for healthcare professionals. From language barriers to varying perspectives on autonomy and suffering, these hurdles can impede the formation of therapeutic relationships that are critical for effective care. [12] Furthermore, the stress stemming from these difficulties underscores the importance of healthcare professionals recognising their own cultural biases and frame of reference. [12] Healthcare professionals often rely on their existing skills and the patient-centred approach of palliative care to adapt to unfamiliar cultural contexts. This involves actively involving families when a person cannot speak for themselves, and striving to understand and meet the unique needs of patients from CALD backgrounds. [12]

Literature suggests patients with life-limiting illness prefer being cared for by people who share elements of their culture. Furthermore, a greater level of religiosity, or belonging to a minority ethnic group is related to a stronger demand for respect toward wishes, beliefs and values before death. [13] However, immigrants to high income countries are reportedly more likely to die in hospitals and tend to receive more aggressive interventions. This is in part due to the lack of family and social support available and the belief these countries have more advanced medical technology. [13]

LGBTQI+ individuals are most likely to experience discrimination throughout the care continuum, including during serious illness conversations regarding autonomy and choice, and at end of life. [14] Healthcare professionals should include chosen families in decision-making and care planning, ensure the clinical environment is safe for the individual to disclose their sexual orientation and/or gender if they want to, and prioritise maintaining the individual’s functional independence and agency. [14]

For individuals who use drugs and/or alcohol, maintaining dignity can be particularly challenging due to societal stigma and discrimination. [15] These factors often result in healthcare settings where their voices and choices are marginalised. Ensuring that care models respect and uphold patient dignity is critical to providing compassionate and person-centred care. [15] For this particular population, healthcare providers ought to foster an environment of trust and respect, free from judgement and stigma; engage in open and empathetic communication to understand and respect patient preferences; and implement flexible care models that can adapt to the unique needs and circumstances of people who use drugs and/or alcohol. [15]

Healthcare professionals sometimes fear discussing end-of-life preferences with people living with a severe mental illness, fearing these conversations may prompt distress and worsening of psychological symptoms. [16] This underserved population is at risk of lacking advocacy in end-of-life decision-making due to limited social and family supports. As a result, these people can become ‘lost in the system’. [16] It is important for health professionals to not assume that capacity is lacking. [16]

Care context

Honouring patient and family carers wishes for where the individual would like to be cared for, and die, is important to high quality end-of-life care. [17] Understanding the reasons behind patients’ location of care preferences can help tailor care plans to better align with their goals and expectations. [17] While most people with a life-limiting illness express a wish to die at home, [18] these preferences are often not reflected in care outcomes. [17] Home-based palliative care challenges are frequently encountered. These include limited access to resources, availability and ability of family carers to provide care, individual patient concerns of being a burden to others, the nature of the relationship with the specialist palliative care provider, and the quality of healthcare being delivered. [17,18] The financial and social standing of patients affects their ability to cope with end-of-life and access supportive resources. [18] Some patients find hospitals during terminal illness a distressing experience due to their loss of control and dignity, while others, particularly those receiving palliative chemotherapy, develop strong relationships with healthcare providers and may prefer to die in hospital. [18] Many patients and their families prefer hospital settings for end-of-life care due to the perceived security and immediate availability of medical interventions. [19] This preference is reinforced by the belief that hospitals can better handle emergencies and complex health issues. Acute hospitals often provide superior symptom management compared to home-based care due to the availability of specialised medical staff, advanced technologies, and the ability to offer around-the-clock care. [19]

Systematically assessing and recording preferences for place of care and death, along with ongoing discussions and training for healthcare professionals, are necessary for providing patient-centred care and adapting to evolving needs and preferences throughout the disease trajectory. [17] Furthermore, normalising home as the best and natural place for death should be avoided, as this advances a feeling of blame and disappointment if death happens elsewhere. [18]

For paediatric patients with life-limiting illnesses, parental involvement in the decision-making processes about medical treatment is recognised as good practice, yet complex and multifactorial. Parents often face emotional challenges and limited empowerment, which compromises their ability to participate effectively. [20] Healthcare professionals should provide support, sensitivity and tailored involvement to mitigate negative experiences, foster hope and empower parents in decision-making. [20,21]

Implications for families and carers

Implications for families and carers The quality and dynamics of relationships between patients and relatives throughout life may influence family and carers’ involvement in patients’ end-of-life decisions. [8] Patients can benefit from significant others’ involvement in end-of-life decision making. This involvement can include family carers recalling and seeking information on behalf of the patient, navigating healthcare services and identifying patients’ preferences of emotional, social and financial support through persistent communication. [8] However, the involvement of significant others can also be a barrier for patients’ decisions when they have divergent understandings of end-of-life preferences. [8] By recognising that the end-of-life experience often impacts the entire family unit, and its broader network, healthcare professionals can foster open discussions through a variety of forums. [22]

Family carers might prefer a hospital setting for the end-of-life care of their loved ones, driven by the perceived security, immediate availability of medical interventions, and the professional support that hospitals provide. [23] Carers reportedly often fear that they may not be able to manage complex symptoms or emergencies at home, leading them to favour hospital care. [23] Providing robust support systems for family carers can help mitigate the burdens of home care and align their preferences more closely with those of the patient. [23] Access to respite care, homecare support workers and emotional support services can empower carers to manage home-based care more effectively, potentially making the option of dying at home more feasible. [23]

However, recognising that a hospital-based death can also be a good death is important. Hospitals can offer a dignified and comfortable environment for patients through holistic care approaches that address physical, emotional and spiritual needs. [23,24] Facilitating choice and agency involves respecting both the patient's and the family's preferences, ensuring that care plans reflect their wishes while considering the practicalities and support available in each setting. [24] By aligning care plans with the preferences and capacities of both patients and family carers, healthcare providers can ensure a dignified and supported end-of-life experience, whether in a hospital or at home. [23,24]