Avulnerable adult is a person who is at increased risk of harm or exploitation because their ability to make decisions, express concerns or defend themselves is diminished (Oxford University Hospitals NHS Foundation Trust, 2016; Byju et al, 2019; de Chesnay, 2019; University Hospital Southampton NHS Foundation Trust, 2019).
Children are largely understood to be vulnerable and adult patients may also be considered vulnerable. Older people, persons with disabilities or mental illness, or even those who have poorer social and economic standing (such as people who are homeless) may experience periods of substantial vulnerability. Paramedics interact with these patients every day, often during times of such vulnerability.
A major concern in healthcare ethics (including within paramedicine) is the protection of vulnerable persons within the realms of patient-practitioner interactions (Moritz, 2017; Townsend, 2017; Ebbs and Carver, 2019). A patient who is treated by paramedics may be vulnerable because they lack the capacity to consent to treatment or, if they do have the capacity to consent to treatment, they lack the ability (or avenues) to express their worries about that treatment, or to defend themselves in circumstances where their consent has been misinterpreted. This raises the prospect that a patient with legal capacity may still be a vulnerable person, and also that a vulnerable person may be harmed or exploited unintentionally within healthcare settings (Oxford University Hospitals NHS Foundation Trust, 2016; Ebbs and Carver, 2019: 27).
LEARNING OUTCOMES
After completing this module, the paramedic will be able to:
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In the first article of this series on applied ethics in paramedicine, the authors examined the ethical principles of autonomy and beneficence in the context of principlism (Ebbs et al, 2020). In the second article, potential conflicts between autonomy and beneficence in relation to end-of-life care were explored (Carver et al, 2020).
This third and final article in the series starts by describing the relationships between the legal principle of capacity and the ethical principles of autonomy and beneficence. It then explores practical issues of capacity, autonomy and beneficence as these apply to some of the most common vulnerable groups that UK paramedics may encounter: children, older people, persons with a mental illness and those with a disability.
Capacity
Capacity is the legal principle, that a person is able to make decisions about their own healthcare where they can demonstrate an ability to understand relevant information given to them about their condition, retain that information and use or weigh that information to make an informed and considered choice (Mental Capacity Act 2005).
Adult patients are presumed to have capacity to make medical decisions so treating them against their will violates their autonomy. The legal principle of capacity is closely aligned with the ethical principle of autonomy as both relate to the independence and freedom that a person can exercise over their own actions and decisions. The ethical and legal principles of autonomy and capacity help to protect patients and clinicians from abuses of power and exploitation in the healthcare relationship because they establish safeguards for patients.
Vulnerable patients may not have the capacity to consent to their own healthcare, or their vulnerability may mean their interests need protection. Clinicians and families may become more involved in the decision-making process or take over that decision-making role in the vulnerable person's best interests.
Determining the scope of decision-making required is crucial because a person's vulnerability should not automatically equate to a loss of autonomy. For example, children (according to the law) have not reached the required age to make their own healthcare decisions, although some have the maturity to do so and will be able to make some autonomous decisions. People with a disability may have difficulty advocating for themselves because of communication issues or their disability may affect their understanding of healthcare considerations. Older patients may have fluctuating capacity so may be able to make decisions for themselves in some circumstances and not others. People with mental illness may also be vulnerable because their illness may sometimes render them unable to make some decisions or, like older patients, their decision-making ability fluctuates.
Fluctuation of capacity means that a person's ability to understand information, retain that information and make an informed decision can come and go. A person's decision-making capacity is subject to change depending on circumstances such as the illness or injury being experienced at the time, the seriousness of the decision and various other factors.
With the exception of life-threatening situations (where a paramedic will often act in the patient's best interests to protect the patient's wellbeing), the preference is for clinicians to restore capacity or to wait for capacity to resume before intervening in the care of the patient.
Paramedics have professional duties toward vulnerable persons. The Health and Care Professions Council (HCPC) (2016, section 7.3: 8) requires that paramedics must take appropriate action where they have ‘concerns about the safety or well-being of children or vulnerable adults’. To assist paramedics in navigating these complex issues, the London Ambulance Service NHS Trust (2019) provides guidance on how to refer vulnerable people to services which may investigate the circumstances and ensure the safety and welfare of the patient).
In the forthcoming sections, these standards, guidelines and ethical principles are used to explore key issues relating to patients who are commonly considered to be vulnerable: children, older people and those with mental illness or disability.
Children as vulnerable patients
Children are considered vulnerable patients because until they reach the age of 16 (Mental Capacity Act 2005: section 2(5)), their parents have parental responsibility for decision-making. However, while parental responsibility involves exercising legal decision-making authority for children, children do have the ability to make some healthcare decisions for themselves in certain circumstances.
A legal concept important in understanding the extent to which children have autonomy in making their own healthcare decisions is ‘Gillick competence’, named after a landmark UK case (Gillick v West Norfolk and Wisbech Area Health Authority [1985]). A Department of Health and Social Security memorandum at the time instructed medical practitioners to provide confidential medical advice to children under the age of 16 without a parent present. A mother (Victoria Gillick) sought to have medical practitioners refuse to provide medical advice to her daughters, aged under 16, in relation to contraception. However, the House of Lords found there were circumstances when a child could consent to their own medical treatment without the clinician seeking or obtaining parental consent.
Gillick competence allows clinicians to assess a child's capacity to determine their decision-making ability. Specifically, if a child has sufficient intelligence and maturity to understand the nature and consequences of particular treatment, they are able to consent to that treatment independently and without parental input according to the UK's Gillick competence doctrine.
Preventing children from exercising their autonomy may cause ethical challenges (Box 1). While parents should be making decisions for infants and very young children, children develop in their maturity as they age and experience life. Allowing a 16-year-old person to make healthcare decisions yet restricting a person one month before their 16th birthday from doing the same seems arbitrary and illogical.
Gillick competence empowers children to exercise autonomy over their own medical decisions. Children are individuals so, although they have not reached adulthood, they should not be excluded from participating in healthcare decisions that affect them. However, children's life experiences, maturity and understanding differ from one individual to the next—depending on factors such as their age, culture, health, upbringing, background and environments—and their ability to process healthcare-related information also varies. Gillick competence addresses children's understanding and provides paramedics and other health professionals with a means to determine the extent of involvement a child should have in decisions that affect their healthcare.
However, ethical issues relating to vulnerability and the treatment of children extend well beyond Gillick competence. A recent topic of concern has been the extent to which paramedics and other health and care professionals are required to report instances of known or suspected child abuse or neglect (Foster, 2020). For example, in England and Wales under section 74 of the Serious Crimes Act 2015, health professionals have a legal duty to notify the police if they discover female genital mutilation.
Unlike in countries such as Australia, Canada and the Republic of Ireland where there are mandatory reporting laws, individual health professionals in England are not criminally liable if they fail to report other instances of known or suspected child abuse or neglect (Forster, 2020). While not criminally liable, registered health professionals (including paramedics) do have a clear professional and ethical duty to act upon instances of known or suspected child abuse or neglect. For example, paramedics have a statutory requirement to safeguard and promote the welfare of children in their care under section 11(2) of the Children Act 2004. Furthermore, the HCPC (2016) standards of conduct place a responsibility on paramedics that they ‘must’ take reasonable actions to this end.
To provide guidance for paramedics in how to meet their obligations in reporting children at risk, the London Ambulance Service NHS Trust (2020) has produced the Safeguarding Children and Young People Policy. Paramedics play a crucial role to protect vulnerable children using the principles of beneficence and non-maleficence.
Older people
A complex range of personal, medical, social and environmental factors may contribute to older people being vulnerable. Older people are largely understood as vulnerable when they fall within the ‘high-risk’ groups of frail, isolated or poor (Schröder-Butterfill and Marianti, 2006). What makes them vulnerable is their lack of defences or resources to deal with threats or risk (Schröder-Butterfill and Marianti, 2006).
A significant ethical consideration for clinicians when treating older patients is their capacity. As with any patient, capacity can fluctuate, although this is more likely with older patients. Capacity can fluctuate over time or as a health condition changes. For example, older patients may experience an acute delirium from an infection that temporarily renders their capacity limited, or may lose capacity permanently because of progressive illnesses such as dementia.
It is important to remember that capacity is not a binary state; it exists on a continuum and depends upon the patient's circumstances and the potential consequences of the decision being made. For example, a patient might have capacity to refuse their temperature being taken or other observations but not to refuse transport to hospital.
When attending older people in the community, paramedics and other clinicians must be cognisant of the patient's life experiences, values and concerns. For many, staying at home is an important consideration in their decisions; older people may only wish to receive care that can be delivered in their home. Perceptions and concerns about receiving treatment at hospital may arise for a number of reasons, such as fear of not returning home, an experience of relatives dying in hospital, worry about pets, stoicism and beliefs about not wanting to bother others. During the shared decision-making process between clinician and patient, paramedics must respect these preferences but also be sure that the material risks associated with alternative options for treatment (including non-transport) are clearly explained to the patient (Chan et al, 2017).
In respecting older patients' choices, their vulnerability requires clinicians to take additional precautions to protect them. Practitioners must manage care that is least restrictive of the patient's rights (Mental Capacity Act 2005, section 1). They may need to consider whether community rapid response services or home GP visits are appropriate, whether additional support services should be organised or if they may need to ensure family members or friends visit the patient in a timely manner.
Like the abuse of children, the abuse of older people is a significant community concern. Elder abuse can encompass neglect, financial duress, psychological threats and violence. Neglect or ill treatment of a person who lacks capacity (including older people) is a criminal offence in the UK (Mental Capacity Act 2005, section 44). Elder abuse is often perpetuated by family members, friends and care workers (Biggs et al, 2009).
Because of older patients' vulnerability, a clinician's role in identifying and reporting elder abuse is crucial. Paramedics may be the first health professionals to encounter these vulnerable adults and be the link to not only ensuring they receive the clinical care required at the time but also to breaking the cycle of abuse through notifications or referrals to agencies and support services.
Mental illness and vulnerability
Mental illness can be a challenging vulnerability for clinicians to navigate. Some people's mental illness will not prevent them from exercising their autonomy and their mental illness will not affect their decision-making capacity. For others, their mental illness may impede them in such a way that clinicians will deem the person unable to make decisions about their own healthcare. While the second article in this series (Carver et al, 2020) discussed mental illness where it related to end-of-life care and self-harm, it should be remembered that patient vulnerability can exist in those with chronic mental illness over their lifetime.
The complexity of mental illness means a person's capacity can fluctuate so they may lose or regain capacity at different stages of their illness. It is particularly important for clinicians to assess patient capacity every time they attend a person rather than relying on past experiences that because the person lacked capacity owing to their mental illness during a previous attendance, they will somehow lack capacity on all future presentations. This is not the case.
Thompson et al (2011) highlight that frequent callers (also known as ‘frequent users’) are known to clinicians because they regularly require paramedic support, usually as a result of a mental illness. Practitioners must be mindful that, despite the frequent interactions with these patients, their behaviour is often perpetuated by mental illness, and the patient needs care for their chronic illness just the same as they would for any other illness.
There are particular ethical challenges when multiple vulnerable groups are involved, such as when a mental health patient is also a parent or is caring for an older person. In such circumstances, clinicians have the added consideration of not only treating the patient but also ensuring the other vulnerable party is protected.
For paramedics, this requires careful thought on how transport and referral dispositions may affect the care and wellbeing of the other vulnerable person. For example, if a patient is transported and this leaves an older person or older child at home, will they be sufficiently able to manage activities of daily living including food preparation, medication management and personal care?
Paramedicine occurs in the social fabric of society. Paramedics' decisions on patients' treatment will often impact others. Therefore, consideration of these effects is part of how they treat patients and make decisions. Putting in place a safety net for all parties is thus an important component of the paramedics' ethical practice. This may entail organising supervision or support, transporting both the patient and their dependants in more than one ambulance if need be or arranging neighbour, support services or family visits.
Another important aspect when treating patients with mental illness is the stigma associated with mental ill health (Fink and Tasman, 1992). In particular, privacy and confidentiality considerations must be foremost when others are present such as work colleagues or neighbours. While clinical information should always be held in confidence, the stigma associated with mental illness means that most patients value their privacy more so in this regard, and paramedics have a duty to ensure they do not share this information, even inadvertently.
Furthermore, those with mental illness may at times experience treatment and management that limits their autonomy, such as during times of severe psychosis where a patient's autonomy is lawfully overridden in their best interests through the use of chemical or even physical restraint.
At these times, police are frequently involved in the prehospital management of patients where there is a potential risk of physical harm to either the patient or paramedics. However, paramedics must be aware that it is a medical event that is occurring and the person is generally not being held for criminal reasons.
Clinicians must, therefore, consider the least restrictive means of achieving patient care (Department of Health and Social Care, 2015). While restraint and sedation may be an option for patient treatment, those options are invasive, contravene autonomy and can perpetuate mental health stigma.
While invasive options may be necessary for the safety of the patient, the clinician and the broader community in some circumstances, they should be used only as a last resort and less invasive treatment options should be preferred where possible, such as voluntary transport to hospital or a community referral.
Disability and vulnerability
Some patients with a disability are considered vulnerable in a similar way to older patients: they sometimes lack the defences or resources to deal with threats to them. A person's capacity depends upon the nature of their disability. Some people with a disability may have mobility issues that do not affect their capacity to consent to treatment and decision-making, while others with a disability may not have decision-making capacity for numerous reasons, including communication difficulties or intellectual disability.
People with a disability may have carers who assist with decision-making and/or to protect their wishes, or who are entirely responsible for decision-making. While carers might have a duty to make decisions that benefit the patient and are least restrictive of the patient's rights, it can be difficult for clinicians to uphold and appropriately consider the patient's wishes when another person is responsible for their decision-making.
In such circumstances, clinicians should include the patient in the decision-making where possible, and be mindful of the impact of decisions on patients. Many people with an intellectual disability or communication difficulties often have written information available, particularly in care facilities, that has been compiled with the assistance of family members, health professionals such as occupational therapists or speech pathologists, psychologists and (of course) the patient (e.g. care passports). These preferences can then be communicated to paramedics during attendances and care should be consistent with these preferences whenever practicable.
Paramedics must be aware of their own personal biases or preconceived ideas of disability; these are sometimes referred to as unconscious biases. For example, some people with conditions such as cerebral palsy may appear to have an intellectual disability that precludes decision-making capacity, where in fact they have no cognitive disability, only communication difficulties.
Many with intellectual or communication disabilities are able to live independently in the community and make autonomous choices about their healthcare. However, again, in much the same way as with other vulnerable people, they may have a sliding scale of autonomy, and paramedics will need to determine each patient's ability to understand, retain and weigh the information being provided to them about their medical condition. Some people with a disability may only be capable of autonomy in choices about low acuity or minor treatment, but not about more serious conditions.
Paramedic practice must consider all of these factors to ensure ethically good care.
Conclusion
Autonomy is an important healthcare principle because it ensures a person maintains control over decisions relating to their healthcare. Vulnerable patients are no exception. For specific vulnerable groups—such as children, older people, those with mental illness and persons with a disability—there are some consistent ethical considerations for clinicians.
Assessing a person's capacity at every attendance is crucial because capacity is fluid, affected by numerous personal, medical, social and environmental factors. Furthermore, capacity can fluctuate, so clinicians must favour capacity assessments made at each attendance over capacity assumptions because of vulnerability or previous dealings with the patient.
A clinician's role in supporting vulnerable people and reporting abuse and neglect is crucial to protecting patients and allowing them to continue exercising the greatest possible level autonomy over their own healthcare.