LEGAL

District nurse consultations with vulnerable patients over wishes for end-of-life care Richard Griffith

Senior Lecturer in Health Law, College of Health Science, Swansea University   

ABSTRACT

As part of an enhanced service under NHS England’s Transforming Primary Care initiative, GP practices will begin to proactively case manage patients at risk of unplanned hospital admissions. At the centre of this service is a case management register and personalised care plan that indicates the patient’s wishes for future care. The initiative, and particularly the asking of questions about ‘do not attempt resuscitation’ orders and end-of-life care, has drawn the criticism of district nurses who are frequently asked to complete the personalised care plans with patients—many of whom they have not previously met. This article considers whether the template for personal care plans is reflective of the law on consent and, in particular, the Mental Capacity Act 2005.

KEY WORDS

w Unplanned admissions w Vulnerable patients w Do not attempt resuscitation w Advance decisions w Mental Capacity Act 2005

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in completing personalised care plans with patients under the scheme (Borland, 2014).

Criticism of the care plan template A template for setting out personal care plans under the avoiding unplanned admissions scheme is provided by NHS England (a copy is available at http://tinyurl.com/lb9a76a). The template form is described as a personalised care plan for avoiding unplanned admissions, but would arguably more accurately be described as a patient information form that will enable GP practices to assess whether an unplanned admission should proceed. The form details personal information, medication, support and communication needs. Most controversial—and the reason the template has been criticised by the Royal College of Nursing (Borland, 2014)—is the requirement for district nurses completing the form to ask patients about whether they have an anticipatory care plan and whether they have agreed to a ‘do not attempt resuscitation’ (DNAR) notice (Borland, 2014).

Asking patients about resuscitation It might be argued that it is entirely appropriate for district nurses to discuss resuscitation and anticipatory care plans with patients. The Court of Appeal held recently in Tracey v Cambridge University Hospital NHS Foundation Trust and others [2014] that DNAR policies should require consultation with capable adult patients or the relatives of patients who lack capacity, before a decision is made to place an order on the patient’s record (Griffith, 2014). The decision in the above case demonstrates why such a question in a personal care plan is inappropriate. DNAR orders and anticipatory care plans are not decisions made by patients; they are top-down decisions made by GPs and the primary care team and are arguably out of place in a care plan that aims to reflect a patient’s wishes about their future.

Mental Capacity Act 2005 The obvious omission from the avoiding unplanned admissions care plan template is any reference to the Mental Capacity Act 2005 (UK Government, 2005), whose

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s part of its Transforming Primary Care initiative, NHS England will offer some 800 000 people with the most complex needs a step-change in their care. GP practices will be required to develop proactive and personalised programmes of care and support tailored to the needs and views of patients and their carers under the Proactive Care Programme (NHS England, 2014a). To improve continuity of care for people aged 75 and over, a named GP with overall responsibility for their care will be appointed. In addition, as an enhanced service under the scheme, GP practices will be able to offer proactive case management to avoid unplanned hospital admissions. Practices offering the enhanced service will establish a case management register of patients identified as being at risk of an unplanned hospital admission without proactive case management and will have to put in place improved systems for communicating with community services, ambulance services and care homes. Patients on the register will have personalised care plans developed that records their wishes for the future (NHS England, 2014b). At least 2% of patients on a GP practice’s list must be on the avoiding unplanned admissions case management register to qualify for funding. District nurses are being asked to assist

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LEGAL statutory framework is specifically designed to ensure that patients’ wishes and feelings are at the heart of decision making over care and treatment. In its comprehensive postlegislative review of the Mental Capacity Act 2005, the House of Lords’ mental capacity committee praised the Act’s person-centred approach and its promotion of choice in care and treatment decisions (House of Lords, 2014). The Committee found that while the 2005 Act enjoyed considerable and enthusiastic support from patients and other stakeholders, its implementation by health professionals and health bodies has been less enthusiastic. It found that decision making continues to be dominated by professionals without the required input from patients, families and carers about the person’s wishes and feelings. The House of Lords’ mental capacity committee was particularly concerned about the poor uptake of the powers in the Act that promote self-determination and patient choice. The use of advance decisions to refuse treatment as a means of ensuring a patient’s wishes are met are still rarely seen in practice. This appears to be due to health professionals being unclear about the authority that powers bestow and a lack of awareness about the powers generally by professionals. As a result, the use of these formal powers is not actively promoted by health professionals. A similar scenario is occurring with the NHS England personal care plan template for avoiding unplanned admission. Rather than encouraging patients to plan for their future care through the use of formal powers under the Mental Capacity Act 2005, it seeks information about matters outside the patients’ control, such as anticipatory care plans and DNAR orders.

Validity of an advanced decision

Advance decisions to refuse treatment

In order to safeguard patients, the Mental Capacity Act 2005 (UK Government, 2005) imposes some minor formalities that have to be complied with if an advance decision is to apply to the refusal of life-sustaining treatment. Lifesustaining treatment is defined as treatment that a person providing health care regards as necessary to sustain life, such as artificial nutrition and hydration or cardiopulmonary resuscitation (UK Government, 2005: section 4(10)). Both the type of treatment and the circumstances to which it applies are relevant when determining whether a treatment is life-sustaining. For example, artificial nutrition and hydration would be life-sustaining treatment in circumstances where a patient was unable to eat or drink by mouth. Withholding artificial nutrition from a patient will ultimately result in death. However, a blood transfusion would only be considered life-sustaining in circumstances where it was needed to save life (following dramatic blood loss, for example). Blood transfusions are also used to treat non-life-threatening conditions, such as anaemia and, under those circumstances, would not be considered life-sustaining treatment. To be valid and applicable for life-sustaining treatment, the decision must be (UK Government, 2005: section 25): w Made in writing w Signed by the person or signed on their behalf in their presence w Witnessed in writing in the presence of the person w Verified by a statement made by the maker that expressly

The House of Lords mental capacity committee argues that advance decisions to refuse treatment are an essential means of allowing individuals to determine their care in the event that they lose capacity (House of Lords, 2014). The general public as a whole, and patients in particular, cannot benefit from this opportunity if they are not made aware of it. Advance decisions to refuse treatment carry legal force under the Mental Capacity Act 2005 (section 24) and, where valid and applicable, effect must be given to the wishes expressed in the advance decision (UK Government, 2005). The Law Commission (1995) defined an advanced decision refusing treatment as:

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‘A refusal made by a person aged 18 or over with the necessary capacity of any medical, surgical or dental treatment or other procedure and intended to have effect at any subsequent time when he or she may be without capacity to give or refuse consent.’ Advance decisions must be promoted as the means by which patients can indicate the type of treatment they would refuse to consent to if they became incapable. Two key elements emerge from the definition: the advance decision must be both applicable and valid. Both elements must be present for an advance decision to be binding.

An advance decision refusing treatment is a relatively informal instrument. It does not generally need to be completed on a particular form, be scrutinised by the office of the public guardian or witnessed by a solicitor. To be a valid advanced decision, the patient must have been a capable adult at the time of making and must not have had a clearly expressed change of heart since that time. The Mental Capacity Act 2005 (section 1) makes it clear to all health professionals that a person is to be assumed to have capacity unless it can be shown otherwise (UK Government, 2005). It must therefore be assumed that a person 18 years or older is capable of making the advance decision to refuse treatment unless there is evidence to the contrary.

Applicability of an advance decision to refuse treatment To be applicable, the circumstances under which the care and treatment is to be refused through the advance decision must now apply (UK Government, 2005: section 25). In Re AK (Adult Patient) (Medical Treatment: Consent) [2001], the court agreed that it would be lawful to discontinue a patient’s artificial nutrition and hydration 2 weeks after he lost the ability to communicate in accordance with his advanced decision. Here the decision was made when the patient was capable and continued to be applicable now that his ability to communicate had been lost due to the advanced stages of motor neurone disease.

Special requirements for refusal of life-sustaining treatment

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LEGAL

Limits to decisions refused in an advance decision Some decisions cannot be enforced through an advance decision. The Code of Practice to the Mental Capacity Act 2005 (Department for Constitutional Affairs, 2007) makes it clear that an advance decision to refuse treatment cannot be used to (UK Government, 2005: section 5): w Ask for anything that is illegal, such as euthanasia, or for help in committing suicide w Demand health care w Refuse the offer of food and drink by mouth w Refuse the use of measures solely designed to maintain comfort, such as providing appropriate pain relief, warmth or shelter w Refuse basic nursing care that is essential for comfort, such as washing, bathing and mouth care.

Existence of an advance decision refusing treatment It is essential that the person who makes an advance decision ensures that it is drawn to the attention of health professionals when needed. It would be far more patient-centred for GPs and district nurses to encourage those at risk of unplanned admissions to set out their wishes in an advance decision, and that their personal care plans note and disseminate

KEY POINTS

w NHS England is establishing an enhanced service scheme where GP

practices offer proactive case management to avoid unplanned hospital admissions w At the heart of the service is a case management register and personal care plan for patients identified as being at risk of an unplanned hospital admission w The NHS England template for personal care plans has been criticised as callous because of questions about anticipatory care plans and ‘do not attempt resuscitation’ orders w The template would put the patient at the heart of decisions about care planning if it adopted the philosophy and framework of the Mental Capacity Act 2005 and encouraged and supported patients to make use of advance decision to refuse treatment to set out their wishes for future care

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the patient’s wishes to ensure they are followed when valid and applicable. The code of practice to the 2005 Act recommends that a copy of the advanced decision is left with the person’s GP and relatives (Department for Constitutional Affairs, 2007). Advance decisions that are not recorded and shared with relevant public bodies are likely to be ineffective. Poor understanding among health and care staff must be addressed in order to promote the benefits of advance decisions to patients, as well as to ensure that they are followed when valid and applicable. Advance decisions allow for a patient-focused expression of wishes regarding future treatment, rather than simply being consulted about a DNAR order.

Conclusion NHS England are encouraging GP practices to provide an enhanced service that offers proactive case management to avoid unplanned hospital admissions. Patients whose care will be proactively managed will have personalised care plans developed that record their wishes for the future (NHS England, 2014b). A template for setting out personal care plans under the scheme is provided by NHS England and has drawn criticism from the press (Borland, 2014) and the Royal College of Nursing, because it asks patients about anticipatory care plans and DNAR orders. DNAR orders and anticipatory care plans are not decisions made by patients; they are top-down decisions made by GPs and the primary care team. The template for personal care plans for avoiding unplanned admissions should adopt the patient-centred approach set out in the Mental Capacity Act 2005 and establish the wishes of the patient regarding future treatment through the use of binding advance decisions refusing treatment. Properly communicated and acknowledged advance decisions allow patients to exercise self-determination beyond incapacity and will more accurately reflect patient wishes about their future care. BJCN If you are interested in finding out more about the legal cases noted in this feature, please email the editor at [email protected] Burke v GMC [2005] EWCA Civ 1003 Re AK (Adult Patient) (Medical Treatment: Consent) [2001] 1 FLR 129 (Fam Div) Tracey v Cambridge University Hospital NHS Foundation Trust and others [2014] EWCA Civ 822 Borland S (2014) Do you want us to let you die? Question nurses on home visits are told to ask elderly patients they have just met. Mail Online, 19 August. http:// tinyurl.com/nnpwxgj (accessed 20 August 2014) Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice. http://tinyurl.com/oqc2mlv (accessed 20 August 2014) Griffith R (2014) District nurse responsibilities in relation to ‘do not attempt resuscitation’ decisions. Br J Community Nurs 19(7): 357–9 House of Lords (2014) Report of the Select Committee on the Mental Capacity Act 2005: Post-legislative Scrutiny. HL139. TSO, London. Law Commission (1995) Mental Incapacity, LC 231. http://tinyurl.com/oyfrkvk (accessed 21 August 2014) NHS England (2014a) Transforming Primary Care: Safe, Proactive, Personalised Care for Those who Need It Most. http://tinyurl.com/nee8276 (accessed 21 August 2014) NHS England (2014b) Enhanced Service Specification: Avoiding Unplanned Admissions: Proactive Case Finding and Patient Review for Vulnerable People. http://tinyurl.com/ npnnc9n (accessed 21 August 2014) UK Government (2005) Mental Capacity Act 2005. http://tinyurl.com/39rfkrh (accessed 21 August 2014)

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and specifically states that the advanced decision is to apply ‘even if life is at risk’. The person does not have to make the written statement themselves. They could make the decision and statement of applicability orally for a district nurse or relative to write down on their behalf. Where a person has made an advance decision refusing treatment that is valid and applicable to the circumstances of the case, then that decision has effect as if the person has validly refused treatment (UK Government, 2005: section 26). The Mental Capacity Act 2005 only authorises an advanced refusal of treatment. Patients cannot demand the provision of treatment in an advanced decision. For example, in Burke v GMC [2005], the Court of Appeal held that the decision to provide or continue treatment was a clinical one to be made by the health professional in charge of the patient’s care.

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District nurse consultations with vulnerable patients over wishes for end-of-life care.

As part of an enhanced service under NHS England's Transforming Primary Care initiative, GP practices will begin to proactively case manage patients a...
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