Beauchamp and Childress (2013) originally developed four principles of biomedical ethics—autonomy, beneficence, non-maleficence and justice—to analyse and improve ethical situations in healthcare (Aldcroft, 2012). Autonomy is defined by Beauchamp and Childress (2013):
‘in which autonomous patients are choosers who act intentionally, with understanding, and without controlling influences that determine their actions’.
Respecting a patient's autonomy means acknowledging that adults who have decision-making capacity (Kukla, 2005) have the right to make informed, uncoerced decisions regarding their own care (Finch, 1981; Willis and Mehmet, 2015). It also gives them the right to take actions based on personal values and beliefs (Stiggelbout et al, 2004; Beauchamp and Childress, 2013), even when their decision challenges clinicians' advice (Sedig, 2016). Minkoff (2014) emphasised that autonomy is a key ethical principle in healthcare which takes precedence over other principles. Sedig (2016) agreed, as patient independence is one of the highest priorities in medicine. Collen (2017) discussed how autonomy develops barriers in healthcare, diminishing what is important in patient care.
Autonomy underlies the principle of informed consent (British Medical Association, 2018), where sufficient information must be provided for an individual to make an informed decision regarding their care (Royal College of Nursing (RCN), 2017; NHS, 2019a). Informed consent must be sought before any procedure, examination or treatment (Greaves and Porter, 2007; Parahoo, 2014), as reflected in article 8 of the Human Rights Act 1998 (Campbell, 2017; Equality and Human Rights Commission, 2018). This allows individuals to determine what happens to their own body (Avery, 2017; Clarke et al, 2012), as well as choose what care and support they receive (Buka, 2015; RCN, 2017). Autonomy was reflected in the government's response to Liberating the NHS with the ‘No decision about me, without me’ plan, which aims to improve patient involvement and choices within the NHS (Department of Health and Social Care, 2012; Health and Social Care Act 2012).
Autonomy is regulated under the Mental Capacity Act (MCA) 2005 (NHS, 2019b). Section 1 of the MCA sets out five statutory principles (Table 1) (Greaney et al, 2008) that protect and empower decision-making in individuals over the age of 16 (Department for Constitutional Affairs, 2007; NHS, 2018; Barcham and Bogg, 2019).
| Principle | Definition |
|---|---|
| 1 | Assume capacity |
| 2 | Support people to make their own decisions |
| 3 | Understand that because people make unwise decisions, this does not mean that they are unable to make an informed decision and lack capacity |
| 4 | Act in the best interest of the person if they lack capacity |
| 5 | When treating or caring for people who lack capacity, the least restrictive option must be chosen |
Case study
A 62-year-old woman, with a history of chronic obstructive pulmonary disease (COPD) and stage 2 respiratory failure, was known to maintain a peripheral capillary oxygen saturation (SpO2) of 85%. The ambulance crew were called out because she had breathing difficulties.
On assessment, she had an SpO2 level of 72%, was acyanotic, with signs of severe respiratory distress and reduced bilateral air entry on auscultation. She had a history of respiratory arrest 2 months previously, leading to endotracheal intubation and an admission to the intensive care unit (ICU).
Despite her hypoxic state, the patient had a Glasgow Coma Scale score of 15/15, was alert and orientated and deemed to have capacity by the ambulance crew after completing the four-stage mental capacity test. She had no care plan or ReSPECT form in place and refused treatment.
Under the MCA, a person is deemed to lack capacity if they fail one of the four stages of the functional decision-making test. These are that the person must be able to: understand the information given to them; retain that information for long enough to be able to make a decision; weigh up the information available to make the decision; and communicate their decision (this could be talking, sign language or simple muscle movement such as blinking).
The patient's respiratory illness was managed by her GP and a respiratory nurse in the community. She took daily medications to manage her symptoms, which included salbutamol, budesonide/formoterol (Symbicort) and carbocisteine. The patient was still an active smoker (smoking approximately 20 cigarettes per day) and therefore had been refused home oxygen. The patient had been offered smoking cessation help by her GP and respiratory nurse, which she had declined.
The ambulance crew did not want to leave this patient at home despite her refusal of treatment. She agreed to sign the relevant disclaimer confirming her refusal for treatment and transport to the emergency department (ED), which posed an ethical dilemma. The ambulance crew provided a safety net for the patient by contacting her GP.
The patient had expressed wishes to receive no further treatment or hospital admissions as she wanted to die at home. She was aware of her condition and knew it was life-limiting. By contacting the GP, the paramedic was able to make the patient's expressed wishes heard and focused on putting an advanced directive or living will in place, respecting the patient's autonomous decision of a dignified death.
Critical analysis of autonomy and its application to the case study
A person is deemed to lack capacity if they fail one of the four stages of the functional decision-making test (MCA, 2005; NHS, 2018). In relation to the case study, the paramedic was required to determine capacity using the four-stage mental capacity test (MCA, 2005). In this case, the patient was able to understand, weigh up and retain the relevant information given to her long enough to communicate her autonomous decision to refuse treatment and transport to the ED (MCA, 2005).
Rozhkov et al (2009) and Pighin et al (2012) would argue that the patient was experiencing an impairment of mind because of her hypoxic state. A study by Virués-Ortega et al (2004) supported this, evidencing that a 15% reduction in arterial blood oxygen saturations (SaO2) reduces an individual's concentration capacity, affecting cognitive function. Further studies by Pighin et al (2012) and Rozhkov et al (2009) supported this research by stating that severe hypoxia (SaO2<72%) causes a severe threat to cerebral function. The literature suggests that hypoxia affects a patient's autonomy as their information handling (Dodd et al, 2010), judgment and decision-making capacity are severely affected; leading to them becoming unaware of risks, which could be fatal (Evans, 2003; Kahneman and Frederick, 2003; Reyna, 2004).
Kent et al (2011) would argue that this evidence does not consider that the patient's hypoxaemia was chronic because of the history of COPD. Dodd et al (2010) argued that the studies could be applied only to patients with acute hypoxia. Several studies suggest there is a preservation of cognitive function as the body adapts to chronic hypoxaemia through a reduction in metabolic demand (Hochachka et al, 1994; Hung et al, 2009; Dodd et al, 2010; Kent et al, 2011; Richardson et al, 2011; Goodall et al, 2014).
The absence of a care plan presented additional challenges for the ambulance crew. Although the patient was deemed to have capacity, her autonomous decision conflicted with the autonomy of the paramedic (Avery, 2017; Collen, 2017). The paramedic is required through law, registration and regulation to practise ethically (Collen, 2017) and is bound by their duty of care (Health and Care Professions Council (HCPC), 2014).
Although the paramedic deemed the patient's decision to be unwise (Collen, 2017), Lord Donaldson, in the case of Re T (Adult) [1992], said: ‘An adult patient who … suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment … This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.’
Paramedics are recognised by the HCPC (2014) as autonomous professionals who are expected to use their own professional judgment in managing individual patients, using integrated skills and self-awareness to manage clinically challenging situations. As an autonomous practitioner, the paramedic in this case found themselves in an unpredictable situation, affecting their professional autonomy and creating legal implications for the paramedic (Journal of Paramedic Practice (JPP), 2015).
Autonomy is not always ideal in healthcare (Beauchamp and Childress, 2013) as in this case, where the patient is refusing life-saving treatment. Beauchamp and Childress (2013) questioned whether intervention to save a life is more morally acceptable than non-intervention in the name of autonomy, considered through beneficence (Fairbairn, 1991). This would override the patient's capacity (Collen, 2017) and disrespect their autonomy (Beauchamp and Childress, 2013). The literature agrees that ethical principles can conflict (Collen, 2017), as overriding a patient's autonomy would conflict with the principle of non-maleficence (Beauchamp and Childress, 2013).
The paramedic attempted to persuade the patient to go to hospital; this could be classed as coercing her decision (Buka, 2015), conflicting with her autonomy and breaching her legal and ethical rights (Clarke et al, 2012). In prehospital care, information can be difficult to obtain (Collen, 2017) and other treatment options available are limited (Clarke et al, 2012; Collen, 2017), which leaves paramedics feeling anxious about leaving patients at home (Greaves and Porter, 2007; Willis and Mehmet, 2015). The paramedic may feel heightened vulnerability because of the potential of clinical negligence (Willis and Mehmet, 2015) and failing to meet the duty of care standards (Collen, 2017).
Paramedics are required to maintain their registration with the HCPC, and are regulated to practise professionally and ethically under the HCPC (2018) code of practice. Within the code of practice, there are two sets of standards that registrants must uphold: standards of proficiency; and standards of conduct, performance and ethics (HCPC, 2014; 2018). The HCPC (2018) standards of conduct, performance and ethics is an ethical framework which, in section 6, says health professionals must be able to manage risk. Paramedics must therefore identify and manage risk by taking all reasonable steps to reduce the risk of harm to patients, as part of their duty of care (HCPC, 2018).
The Association of Ambulance Chief Executives (AACE)/Joint Royal Colleges of Ambulance Liaison Committee (JRCALC) emphasise how a professional's duty of care to patients must involve a careful balance. This means that the professional must accept and be prepared to take some risks to deliver safe and effective care (Brown et al, 2019). A professional's duty of care is a legal requirement under tort law (Deakin et al, 2007), which means a paramedic is required by law to keep patients safe from harm (UNISON, 2011).
The Bolam test is a standard measure to determine if a professional has breached their duty of care (Oxford University Press, 2019); it was introduced in 1957 following the clinical negligence case Bolam v Friern Hospital Management Committee. A paramedic's liability for clinical negligence occurs when any one of the four aspects of duty of care have been breached, which are: the professional must have a duty of care to the patient; the professional must breach that duty; the patient has experienced harm; and the harm was caused by the professional's breach of their duty of care towards that patient (Kline and Khan, 2013). AACE/JRCALC make reference to tort law by stating that ‘the NHS ambulance service has an established legal duty to provide a reasonable standard of care to patients without unreasonable delay’, as seen in the case of Kent v Griffiths [2001] (Brown et al, 2019). This means that the paramedic in this case was acting well within their duty of care and professional autonomy to ensure that this patient remained safe and received the necessary treatment without delay.
However, if the paramedic were to treat and transport this patient without her consent, it could be classified as an assault (Lindley, 1991; Willis and Mehmet, 2015) or a battery in civil law (Clarke et al, 2012; Moore, 2012), as seen in the case of Devi v West Midlands Area Health Authority [1980]. Komrad (1983) and Gillon (1991) argued that in order to maximise a patient's autonomy, it would be morally acceptable to override such autonomy in order to increase it. Brazier and Lobjoit (1991) agreed, adding that intervention to save a life should take precedence over autonomy to protect the vulnerable and the severely ill, as seen in the case of Re E (Medical treatment: anorexia) [2012] (Whiteman, 2012). Buka (2015) disagreed, stating that it was both legally and unprofessionally unacceptable to force treatment on competent patients, denying them of their basic human rights because their decision appears to be unwise. The paramedic's own values can conflict with the patient's values (Collen, 2017), which appears to be the case in this ethical situation. Avery (2017) agreed, stating that ethics is not about being morally wrong or right, but more what is safe and lawful for the patient.
The paramedic in this case study has not breached their duty of care by acting through the other three ethical principles: justice (what is morally right); beneficence (the moral obligation to act for the benefit of others); and non-maleficence (first, do no harm) (Beauchamp and Childress, 2013; JPP, 2016). The paramedic also maintained the HCPC code of practice by following their standards of proficiency by exercising their professional autonomy. The paramedic used their professional judgment to manage an ethically challenging situation (HCPC, 2014).
In this case, the paramedic acted through beneficence, incorporating the patient's autonomous decision, by leaving her at home but contacting her GP as a safety net (Collen, 2017). The paramedic accepted a reasonable risk by leaving this patient at home as she had wished. However, the paramedic balanced this risk by contacting her GP. This provides a safety net for not only the patient but also the paramedic. The AACE/JRCALC guidelines advocate that it is good practice for paramedics to inform the patient's GP about their decision to refuse treatment without the patient consenting to this (Brown et al, 2019). The GP agreed to do a home visit and the ambulance crew waited on scene for the GP to arrive, ensuring that the patient remained safe and enabling them to provide an accurate handover. The patient agreed to sign the disclaimer confirming her refusal of treatment and transport to the ED, with a witness present who also signed the paperwork.
The paramedic's intention for the GP visit was to accommodate the patient's expressed wishes to receive no further treatment for her life-limiting respiratory condition, enabling her to die at home. Therefore, an advance care plan could be discussed while the patient has capacity to put one in place (Pilbery and Lethbridge, 2016). The paramedic acted through the principles of beneficence, justice and non-maleficence (Beauchamp and Childress, 2013), allowing the patient's voice to be heard and her wishes to be met (Buka, 2015; Collen, 2017).
If an advance directive or a living will is in place, health professionals are obliged to adhere to the patient's expressed wishes of a dignified death (Buka, 2015; Pilbery and Lethbridge, 2016).
Summary
Decision-making is a fundamental skill for paramedics, and can concern complex ethical situations when treating patients. It was evident in the literature how autonomy can cause barriers in healthcare, as patients can often have different views from clinicians.
In the scenario discussed here, the paramedic complied with the patient's autonomy, respecting her decision to refuse treatment. The law states that clinicians must respect an autonomous patient's right to refuse treatment, which can leave clinicians with a sense of vulnerability and anxiety around performing their duty of care. Through beneficence, while maintaining the patient's autonomy, the paramedic in this case was able to provide a safety net for the patient by referring her to the GP. This was well within the paramedic's requirements of best practice, as supported by clinical guidelines. The paramedic therefore maintained their duty of care while respecting the patient's expressed wishes and embracing the opportunity to discuss an advance directive.