LEARNING OUTCOMES
After completing this module, the paramedic will be able to:
This is the second of a two-part article on care of the patient who is dying or at risk of dying. The previous instalment recognised that care of such patients is a fundamental part of frontline paramedics' professional role (Taylor and Brogan, 2020). Paramedics will be called to attend patients and their families at one of the most difficult times in their lives, and will need to uphold their duty of care to the patient by making decisions that have sound a clinical, professional and legal basis (Cassidy v Ministry of Health, 1951; Health and Care Professions Council (HCPC), 2016).
While individual circumstances differ, the outcome of these decisions can have profound implications; for example, a decision to discontinue active, life-preserving treatment and shifting the focus of care to symptom palliation to enable the patient to die with dignity.
In addition, paramedics may be challenged by the environment in which care is given. Factors such as the risk of personal harm (when caring for a victim of violence), distressed relatives and other onlookers, adverse weather conditions or the sounds and activity from other emergency services may all serve as potential distractors in the decision-making process.
Although some patients may be conscious and able to communicate their wishes and preferences, others may not be able to do so. Paramedics may be met by relatives at the scene who claim authority to make decisions on the patient's behalf, or who hand over a note purportedly written by the patient, and tell you that ‘he always said he didn't want to go into hospital or have any more treatment—he wants to die at home in his own bed’. Or there may be circumstances in which it is clearly not be in a patient's best interests to continue any attempts at cardiopulmonary resuscitation (CPR), but where people present insist that paramedics continue this.
Amid these challenges, paramedics must have the knowledge, understanding and confidence to make effective, justifiable decisions that uphold the fundamental imperative to involve patients in decisions relating to their care so far as is possible (HCPC, 2016), and comply with the legal principle of informed consent considered in the first part of this article (Taylor and Brogan, 2020).
In part 1, Taylor and Brogan (2020) considered matters relating to consent and mental capacity in decision-making at the end of life. Part 2 develops this theme further by considering issues such as advance care planning, advance decision to refuse treatment (ADRT) and do not attempt CPR (DNACPR) decisions.
Reflective activity: CPR refusal
Abbie and Dawn are called to the scene of a road traffic collision. On arrival, they find a 55-year-old male passenger in one of the cars in traumatic cardiac arrest. He is wearing a dog-tag-style pendant around his neck with a red cross on the front and the words ‘If I go into cardiac arrest, I do not want CPR’ engraved on the back. There is no other information available.
Advance care planning
If the patient does not have capacity to give or refuse consent to a particular intervention, and there is no lasting power of attorney (LPA), nor court-appointed deputy to make decisions on their behalf, section 5 of the Mental Capacity Act (MCA) 2005 provides legal protection to paramedics providing ‘care’ or ‘treatment’ to patients they ‘reasonably believe’ to lack mental capacity to consent to that particular intervention, provided they ‘reasonably believe’ (MCA 2005, 5(1)(b)(ii)) their decision to being in that person's best interests (as set out in sections 4 and 5, MCA 2005). Paramedics may face legal action if they fail to satisfy these criteria (Esegbona (on behalf of the estate of Christiana Esegbona, deceased) v King's College Hospital NHS Foundation Trust, 2019).
Any decisions made on behalf of a patient who lacks capacity must in their ‘best interests’ (see the first in this series (Taylor and Brogan, 2020), for an in-depth consideration of decision-making where the patient lacks mental capacity to consent). This applies to practitioners' decisions in the same way as to those made under an LPA or by a court-appointed deputy. It means that these decision-makers ‘must consider, so far as is reasonably ascertainable … [the patient's] past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), [including] … the beliefs and values that would be likely to influence his decision if he had capacity, and [any] other factors that he would be likely to consider if he were able to do so’ (MCA 2005, section 4(6)).
The need to take a patient's wishes and preferences into account even when they are not able to articulate them in person has led to an increased emphasis on need for collaborative development of individualised care plans for patients known to be dying (Taylor, 2018). This advance planning is intended to support decision-making in the final stages of life, and enable the patient to give a clear statement of their wishes and preferences in the event that they are no longer able to do so. Advance planning is widely advocated by the National Institute for Health and Care Excellence (NICE) (2015; 2018; 2019a; 2019b) in a number of guidelines relating to care in the days, weeks or months preceding death.
This means that, if called to the home of a patient for whom death is expected, paramedics should request access to care planning documentation to ascertain the patient's preferences for treatment at the end of life. They should be aware that documentation relating to end-of-life care generally falls into one of two categories:
While not legally enforceable in themselves, documents such as advance statements and joint crisis planning documents will generally contain information relating to the patient's care preferences and, if the patient lacks capacity to consent, should be taken into account by paramedics when making best-interests decisions about the patient's care. Paramedics would be required to justify any deviation from these wishes (NICE, 2018).
If a patient or other party indicates that a valid ADRT exists, paramedics are legally obliged to comply with it if it is applicable and valid. Having first established that the patient lacks capacity to consent to treatment, practitioners have several additional questions to ask to establish validity (Department for Constitutional Affairs (DCA), 2007):
It is very important that paramedics understand the nature and scope of an ADRT because they are obliged to ‘follow a valid and applicable advance decision, even if they think it goes against a person's best interests' (DCA, 2007: 169, para 9.36) and, if they fail to respect that decision, they may be liable in civil (battery) or criminal law (assault). However, liability will not be incurred and treatment may be given if paramedics ‘have genuine doubts, and are therefore not “satisfied” about the existence, validity or applicability of the advance decision’ (DCA, 2007: 175, para 9.58).
Indeed, paramedics should be aware that simply because an advance decision was ‘intended to be binding does not mean that it is binding’ and should assess the applicability and validity of an advance decision in light of the circumstances at the time treatment decisions need to be made, and document the outcome of their evaluation (National End of Life Care Programme, 2013: 23).
If paramedics have reasonable belief that an ADRT is not valid, their clinical decision making should be based on an evaluation of what is in the patient's best interests (DCA, 2007, para 9.45), unless the existence of a valid, applicable advance decision becomes apparent, in which case the emergency treatment specified should immediately cease (National End of Life Care Programme, 2013).
Reflective activity: recent death
Rob and Sue visit the home of Daniel, a 15-year-old boy they had visited several times previously. He has been receiving palliative care for an inoperable brain tumour and, on arrival, it becomes clear that he has died very recently. His mother is distraught and begs you to ‘do something’ to ‘keep him going’ until his father can get home from work to be with him in his final moments.
Advance decision to refuse life-sustaining treatment
The MCA 2005 also provides a legal framework for patients to make an advance refusal of life-sustaining treatment. Section 25 of the act sets out criteria for the valid advance refusal of life-sustaining treatment, and its code of practice (DCA, 2007: 164, para 9.19) provides some additional guidance, specifying that it must:
It is important to note at this point that a valid refusal of life-sustaining treatment is not an overall rejection of all treatment, and an advance decision cannot decline acts relating to basic comfort or care; for example, providing the patient with shelter, keeping them warm or offering them oral fluids (where appropriate). The paramedic would be in breach of their duty of care if they did not make these comfort measures available (while being aware that if the patient does have capacity, they may refuse them) (DCA, 2007: 167, para 9.28).
Reflective activity: advance decision
On arrival at the scene of a road traffic collision, Abs and Jon are asked to attend to Bob, a 68-year-old man with life-threatening injuries. Bob had been competing in a cycling sportive and his emergency contact details indicate that he has made an ADRT including an advance decision to refuse CPR. He has no family or friends with him and the crew are not able to contact his GP. He goes into cardiac arrest.
Legal obligation to provide treatment and DNACPR decisions
While advance decisions provide a way of enabling patients to make known what treatment they would not wish to have in some specified circumstances in the future, the converse does not apply. While the MCA 2005 code of practice (DCA, 2007: 161, para 9.5) makes clear that ‘people can make a request or state their wishes and preferences in advance… [which health professionals] should then consider … when deciding what is in a patient's best interests … if the patient lacks capacity’, there is no legal compulsion for paramedics to provide any treatment that they consider is not clinically justified (R (on the application of Burke) v General Medical Council, 2005).
While some practitioners may find the idea challenging, there is no legal obligation to provide even life-sustaining treatment that is not in the patient's clinical best interests or an intervention that has the effect of prolonging life where there is no prospect of recovery (Airedale v Bland, 1993). Unless there is a valid ADRT explicitly stating the patient's refusal of CPR and the patient's wishes in that respect are not known, pending a clinical assessment, paramedics should work on the ‘initial presumption in favour of [administering] CPR’. (British Medical Association (BMA) et al, 2016: 17).
The decision as to whether to attempt CPR should be a clinical one based on a consideration of the relative burdens and benefits associated with the intervention. There is clear guidance that the decision not to attempt CPR is a clinical decision if the clinical team has good reason to believe that a person is dying as an inevitable result of advanced, irreversible disease or a catastrophic event and that CPR will not re-start the heart and breathing for a sustained period. If there is no realistic prospect of a successful outcome, CPR should not be offered or attempted’ (BMA et al, 2016: 10).
The responsibility for this decision will sit with the most senior practitioner in attendance but, as far as is possible, they should facilitate a consensus agreement with other clinicians in attendance. There is also a ‘presumption in favour’ (BMA et al, 2016: 10) of discussing with and justifying the decision to the patient or their representatives if they lack capacity. However, even if paramedics decide not to attempt (or at some point to discontinue) CPR, decisions relating to any other care (for example, pain relief and other symptom management) should continue to be made on the basis of clinical need (BMA et al, 2016).
Where there is a valid advance documented decision that CPR should not be attempted in the event of cardiac and/or respiratory arrest (a DNACPR decision), this must be complied with. However, unlike a valid ADRT in which the patient has specifically refused CPR attempts, a DNACPR ‘form is not binding [and] should be regarded as an advance clinical assessment and decision, recorded to guide immediate clinical decision-making in the event of a patient's death or cardiorespiratory arrest’ (BMA et al, 2016: 17).
This means that in an emergency, the paramedic with responsibility for managing the patient's care must decide whether or not to apply that advance decision relating to CPR and, regardless of the outcome of their decision, the paramedic will be accountable and must be able to justify it. For example, paramedics may encounter a situation where a DNACPR decision has been made but cardiac or respiratory arrest results from ‘a readily reversible cause such as choking, a displaced or blocked tracheal tube, or blocked tracheostomy tube’. In these circumstances, ‘CPR would be appropriate, while the reversible cause is treated, unless the person has made a valid refusal of the intervention in these circumstances’ (BMA et al, 2016: 17). Practitioners should be especially ‘cautious of overriding a DNACPR decision where the CPR decision form records that the patient has expressed a clear wish not to receive attempted CPR’ (BMA et al, 2016: 17).
However, where an advance decision has not been made, the BMA et al (2016: 11) make it clear that where clinical indications suggest that CPR (and with respect to the initial presumption in favour of initiating CPR) may not be in the patient's interests due to the onset ‘of an acute, severe illness with no realistic prospect of recovery’, decisions relating to treatment (including administration of CPR) should not be delayed unduly if the patient's family members or other carers cannot be contacted, as this would not be in the patient's best interests. After the event, the paramedic must ensure that they document not only the decision not to administer CPR fully, but also the rationale for that decision. The BMA et al (2016: 12) state that ‘[a]ll reasonable effort must be made to contact those close to the patient to explain the decision, preferably in person, as soon as is practicable and appropriate’.
Emergency where the patient lacks capacity to consent
Despite the national drive to implement advance care planning as a means of improving patient-centred care for those known to be approaching the end of life, recent research indicates that prevalence remains low, even among patients with known morbidities and requiring repeat admissions to hospital from other care organisations (Knight et al, 2019).
Even where advance planning has taken place, the documentation may not be readily to hand, such as where an ADRT is thought to have been written but cannot be located. In such circumstances, the DCA (2007: 174, para 9.56) advises that while a valid ADRT will apply in emergency situations, emergency treatment should not be delayed ‘to look for an advance decision if there is no clear indication that one exists’.
Paramedics may also be called to patients for whom the prospect of death is the unexpected outcome of traumatic injury or medical emergency, and where there has been no reason for engaging in the advance care planning process or thought given to ADRTs. In these cases, while paramedics would ideally be able to actively involve the patient in the decision-making process (see Taylor and Brogan (2020) for a more in-depth consideration of the imperative for informed consent), they will be reliant upon information from other sources and will have to ensure that their decision-making complies with the best interest principles. These principles are set out in the Mental Capacity Act 2005 (Taylor, 2016) and considered in the section titled ‘What if the patient is not able to give their consent in an emergency situation?’ in the first instalment of this article (Taylor and Brogan, 2020).
Conclusion
While the paramedic will be driven by the imperative to provide care that upholds and respects the patient's right to autonomy, individual circumstances might make this challenging.
This second part has therefore presented a further exploration of the legal framework underpinning the decision-making process when caring for a patient approaching the end of life. It has built on issues relating to consent and mental capacity explored in part 1, and provides readers with a range of opportunities to further explore legal considerations in end-of-life care and addresses issues such as advance care planning, ADRTs and DNACPR decisions.