LEARNING OUTCOMES
After completing this module, the paramedic will be able to:
Recognising that a patient is dying or at risk of dying is intrinsic to the work of paramedics working in emergency or urgent care. They may get called to a trauma scene where it becomes apparent that casualties have life-threatening injuries, or arrive at the home of a patient with ‘breathing difficulties’ to discover that they are unresponsive, snoring and have a Glasgow Coma Scale (GCS) score of 3.
Paramedics may be called to a person's home by a distressed relative who has discovered that their loved one has taken an overdose of medication in attempt to end their life, or by a devastated parent who found their 3-year-old child face down in the paddling pool and has not been able to get them to respond. Or they may be called at 3 am by the partner of a 45-year-old woman receiving palliative care at home for breast cancer with brain and bone metastases, who is concerned because her breathing and level of consciousness have changed.
Although the nature of each of these scenarios may seem familiar, paramedics will recognise that the circumstances of each patient they are called to assist will be different and present their own unique challenges. Although the Health and Care Professions Council (HCPC) (2016) is clear that paramedics must not allow their personal views and feelings to influence their clinical decisions, this may prove difficult in situations such as where:
Regardless of their own feelings, paramedics must be mindful of their legal (see, for example, Cassidy v Ministry of Health, 1951) and professional duty of care to their patients (HCPC, 2016). The care they provide must be lawful, in their patient's best interests and uphold the patient's right to autonomy and dignity (HCPC, 2014). Furthermore, the HCPC (2016) is clear that, wherever possible, patients should be involved in decisions relating to their care and treatment; they should adhere to the legal principle of informed consent explored in the previous article in this series (Taylor and Brogan, 2020). Although some patients may be conscious and able to communicate their wishes and preferences, others may not be able to do so.
Regardless of the difficulties involved in a set of circumstances, paramedics will be accountable for making and justifying their clinical decisions (HCPC, 2014). It is therefore important that paramedics both understand and can confidently apply the legal framework underpinning care of the dying patient. This article examines issues relating to informed consent and mental capacity and relates them directly to decision-making at the end of life.
Reflective activity
Paramedics Mohammed and Sarah are called to Mike, a 64-year-old man who is reported to have fallen 75 feet out of a tree. They are met at the scene by the owner of the garden he had been working on, and she takes you to Mike.
On arrival, the crew finds that Mike is hypotensive, tachycardic and with indications of significant internal haemorrhage including rigidity of the abdomen, and an open-book pelvic fracture.
Despite this, he appears to be fully conscious and tells Mohammed and Sarah that he knows he has ‘done something serious’ but does not want ‘any of that chest pumping stuff’ that he has seen on the TV, then becomes unresponsive.
Decision-making in end-of-life care: the need for consent
Other than where mental health legislation gives authority for the patient to receive compulsory psychiatric treatment, the general position in law is that a paramedic must obtain a patient's informed consent before proceeding with any form of care. In addition, if an adult patient (aged ≥18 years) with capacity refuses treatment—they are not required to explain or justify this decision—their wishes must be respected even if that refusal results in their death.
While the paramedic must ensure that the patient is fully informed about the implications of their decision, they should take care to avoid coercing or otherwise exerting pressure on the patient to accept treatment (British Medical Association (BMA), 2019). Taylor and Brogan (2020) give a more in-depth consideration of the law regarding informed consent.
When the patient lacks mental capacity
When the Mental Capacity Act 2005 was enacted in 2007, it introduced (in England and Wales) for the first time a statutory framework for clinical decision-making and providing treatment when a patient lacks decision-making capacity.
Key provisions in end-of-life care include advance decisions to refuse treatment (ADRT), and the appointment of proxy decision-makers through lasting power of attorney (LPA) and court-appointed deputies. Paramedics should be aware that while the Mental Capacity Act 2005 generally applies to people aged ≥16 years, the appointment of LPAs and making ADRTs is restricted to adults over the age of 18 (Mental Capacity Act, 2005).
The previous article in this series (Taylor and Brogan, 2020) considers variations in the law relating to young people, children, adults and consent, as well as national differences in the UK.
Because of these complexities, this article will focus on the law relating to adults in England and Wales.
Where capacity to consent is not clear
Although the Mental Capacity Act 2005 provides the statutory presumption of mental capacity, there will be circumstances—such as where the patient is unconscious—where the paramedic can be certain that the patient lacks capacity to consent to care.
However, there may be situations where, despite making all reasonable efforts to enable the patient to engage with decision-making, to make or at least to contribute to a decision, the evaluation of capacity is less clear. In these situations, the paramedic is advised to ‘seek further advice from others involved in the patient's care or a colleague with relevant specialist experience [and where] there is uncertainty or disagreement about a patient's capacity that cannot be resolved, a court can be asked to decide’ (BMA, 2019: 6).
Lasting power of attorney
The first option a paramedic should consider if a patient lacks mental capacity to consent to their care is whether the patient has registered a health and welfare LPA conferring authority to one or more people to make healthcare decisions on their behalf in the event that they lose mental capacity (Mental Capacity Act, 2005).
Paramedics should ask this question of all patients in these circumstances, as registering an LPA is something that is an encouraged part of life planning, regardless of age or existence of underlying conditions such as dementia.
If an LPA has been appointed, they will have the same rights to consent to (or refuse) treatment as the patient (but only once the patient has lost capacity), unless the LPA has specifically excluded particular decisions (Department for Constitutional Affairs (DCA), 2007). It is also important to note that someone acting on the patient's behalf under an LPA will also have authority to give or refuse consent to life-sustaining treatment if the LPA gives specific authority for them to do so.
Any decisions made under an LPA must be made in the patient's best interests (DCA, 2007) and the paramedic should seek advice as the Mental Capacity Act 2005 gives the court of protection ongoing authority to act where decisions made under an LPA may be unlawful.
For a paramedic to be able to legally rely on proxy decisions made under an LPA, the LPA must be valid and registered with the Office of the Public Guardian (OPG). The OPG (2017) has published examples of the three variants of LPA forms used since they were introduced in 2007 along with guidance on how practitioners may check registration status. This generally involves checking for the presence of a perforated stamp declaring it is ‘validated’ on the front page and an additional stamp and/or box giving the date of registration.
The OPG (2017) also emphasises the need to review the LPA document in entirety to enable checking and verifying:
The paramedic should also ensure they have been given information on the appropriate LPA as authority under a finances and property LPA does not confer authority to make decisions relating to health and welfare. Blank LPA documentation has been made available by the OPG (2013) and paramedics are advised to take the time to familiarise themselves with this documentation before they have to deal with them during an emergency.
Court-appointed deputies
An LPA must be registered while the patient has mental capacity to do so but, where the patient has lost (or never had) capacity, there is authority under the Mental Capacity Act (2005) for the court of protection to appoint a deputy who has authority to make specific decisions on their behalf. Deputies may be members of the person's family, or third parties such as a solicitor (Taylor, 2018), so it is important that the paramedic not only takes care to determine the existence of an LPA or court-appointed deputy but also checks the registration documents to ascertain the nature and scope of the authority conferred.
Reflective activity
Paramedics, Sam and Ed, are called to the home of Judith, an 89-year-old woman. Judith has been living with vascular dementia for several years and has several comorbidities, including coronary heart disease, angina and hypertension.
When the crew arrive on scene, they find that she is responsive only to pain (GCS E=5 V=5 M=4). A 12-lead ECG shows that Judith is experiencing an acute myocardial infarction. Her daughter Susan is present on scene and tells Sam and Ed that her mother would not want to be conveyed and that they should ‘let her go’. She goes on to tell the crew that she has lasting power of attorney (LPA) for her mother and has authority to make this decision on her mother's behalf.
Reflective activity
Sid and Bob are called to Clarissa; she is well known to them. Clarissa is an alcoholic and regularly consumes two bottles of vodka a day. Today they discover that she has so far consumed 1.5 bottles of vodka; she has also taken 32 paracetamol tablets and was in the process of taking a further 32 before her adult daughter found her and confiscated the tablets.
Clarissa's son was stabbed to death in an alleyway 7 years ago and the suspect was acquitted of his murder. Since then, she has made her wish to end her life well known and, on this occasion, she calmly tells the crew that she does not want any help from anyone and just wants to be left to die in peace.
Suicide
The topic of suicide and capacity is controversial and hotly debated. While practitioners may wish to respect a patient's right to autonomy (Beauchamp and Childress, 2013) and uphold the statutory principle that ‘[a] person must be assumed to have capacity unless it is established that he lacks capacity’ (section 1(2) of the Mental Capacity Act 2005), this can prove challenging when the patient is choosing to end their own life. Paramedics may experience conflict when attempting to balance their duty of care to the patient with the need to respect their right to self-determination.
Enactment of the Suicide Act 1961 meant it was no longer a criminal offence for a person to attempt to end their own life in England and Wales (the equivalent law in Northern Ireland is the Criminal Justice Act (Northern Ireland) 1966, and suicide has never been an offence under Scottish law). While this has decriminalised the act of suicide, societal acceptance of the right to determine the time and manner of the end of one's own life has not been so straightforward and may present challenges in healthcare.
For example, some healthcare organisations have made broad statements identifying that any person wishing to end their life has a disturbance of the mind or brain, allowing treatment to proceed under the remit of the Mental Capacity Act 2005 and in the patient's best interests. The best interest, in such cases, is often confused with ‘medical best interest’ and a consideration of what will allow the patient to recover (or not die) rather than a more holistic approach to best interests (Re A (medical treatment: male sterilisation), 2000). This illustrates the combined effect of a paternalistic approach to health with the practitioner's fear of liability if they fail to stop a person carrying out suicide.
All this can result in an environment where paramedics tend to rely on their interpretation of ‘acting in the patient's best interests’ as ‘I will prevent my patient from dying, because how could anyone with mental capacity intend to die?’ and without due consideration of the legal rights of the capacitous individual to voluntarily and actively take their own life (re Z (local authority: duty), 2004; Haas v Switzerland, 2011; R (Maughan) v Senior Coroner for Oxfordshire, 2019).
A suicide attempt in itself should not be regarded as indicating that the patient lacks mental capacity but it may be sufficient to indicate the need to carry out what Ruck Keene (2020) describes as a ‘real-time’ assessment of capacity in accordance with the Mental Capacity Act 2005; on ‘the balance of probabilities’ (R (Maughan) v Senior Coroner for Oxfordshire, 2019: 576), does this patient have capacity to make this decision at this point in time? If they have capacity, they have the right in law to have their decision respected and, if not, care may be given in accordance with the provisions of the Mental Capacity Act 2005.
Doctrine of double effect: good intentions, adverse consequences
Whether during an emergency trauma situation or planned management of a patient in the final stages of a progressive terminal illness, paramedics may experience concern that any respiratory depression resulting from the administration of opioid analgesia and sedation may hasten a patient's death. Indeed, it has been recognised that some healthcare practitioners may be reluctant to give medication out of fear of the legal implications (Taylor, 2015).
It is important that paramedics are aware that the law differentiates between an act done with the intention of ending life and one in which hastening an already impending death is incidental to attempts to bring patients relief from symptoms.
While the former would constitute murder and ‘can never be justified’, the latter ‘will often be fully justified, notwithstanding that this will hasten the moment of death' (Re J (a minor) (wardship: medical treatment, 1991: 149).
This is often referred to as the ‘doctrine of double effect’ whereby an adverse event (hastening death) arises because of an act done with good intentions (palliation of symptoms) (Williams, 2001).
Conclusion
While paramedics are expected to work in dynamic and complex systems, it is important that they have a clear understanding of the principles of law relating to decision-making with patients at the end of their lives. There may be competing interests, drivers and opinions from a range of sources that may compromise the paramedic's endeavour to uphold the patient's interests in the decision-making process.
This article built on a previous article by the same authors (Taylor and Brogan, 2020) by exploring a range of issues relating to consent, mental capacity and decision-making at the end of life. Together with the reflective activities and multiple choice questions available on the Journal of Paramedic Practice CPD platform, it is intended to support the paramedic's understanding of the legal framework underpinning the sometimes difficult decisions they will be required to make in practice.
A further article in this series will provide readers with a range of opportunities to further explore legal considerations in end-of-life care and will address issues such as advance care planning, ADRT and DNACPR decisions.