CPD
Prepare for revalidation: read this CPD article and write a reflective account http://revalidation.zone
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CONTINUING PROFESSIONAL DEVELOPMENT
Progressive neurological conditions multiple choice questionnaire
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Advance care planning in progressive neurological conditions NS777 Kent A (2015) Advance care planning in progressive neurological conditions. Nursing Standard. 29, 21, 51-59. Date of submission: June 3 2014; date of acceptance: September 29 2014.
Aims and intended learning outcomes
Abstract Advance care planning in progressive neurological conditions is an essential part of care, allowing individuals to make decisions and record their wishes regarding the care they receive in the future. Nurses are ideally placed to become involved in this process and should understand how they can assist patients, carers and families through a dynamic process of consultation and discussion. This article considers the process of advance care planning in relation to progressive neurological conditions and discusses how the Mental Capacity Act 2005 provides the legislation within which professionals must work.
Author Anna Kent Neurological conditions clinical specialist, Neurological Conditions Clinical Specialist Team, Milton Keynes Community Health Services – Central and North West London NHS Foundation Trust, Milton Keynes, England. Correspondence to: [email protected]
The aim of this article is to provide an overview of advance care planning and its use when caring for people with progressive neurological conditions. It discusses the processes involved in advance care planning and the legislation that supports it. After reading this article and completing the time out activities you should be able to: Describe the benefits of advance care planning. Outline the problems associated with advance care planning for people with progressive neurological conditions. Identify and be able to source appropriate resources to support the development of an advance care plan. Discuss the importance of the Mental Capacity Act 2005 in relation to advance care planning.
Keywords Advance care planning, advance decision to refuse treatment, End of Life Care Programme, Huntington’s disease, Lasting Power of Attorney, Mental Capacity Act 2005, neurological conditions, Parkinson’s disease
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. To write a CPD article: please email [email protected] Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
Introduction This article considers the development of advance care planning, and its use in the support of people with progressive neurological conditions. Advance care planning should not be considered solely for individuals with a life-limiting condition (Emanuel et al 1995). The process is equally transferable and applicable to other areas of care and could be useful for the population as a whole. Nurses who have the appropriate skills and knowledge have a role in helping a patient develop an advance care plan. There are an estimated 12.5 million people in the UK with a neurological condition that is usually lifelong and largely not preventable (Neurological Alliance 2014). Neurological
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CPD person-centred care
1 Watch the short film I Didn’t Want That (http://dyingmatters. org/page/i-didnt-wantthat) and reflect on how not making wishes known can affect an individual’s care and those close to him or her.
conditions are disorders that affect normal functioning of the nervous system, which includes the brain, spinal cord and peripheral nerves. Types of neurological condition can be categorised loosely into further subgroups (National Audit Office 2011): Sudden onset, for example spinal cord injury, acquired brain injury or stroke. Unpredictable and intermittent, for example relapsing-remitting multiple sclerosis (MS) or epilepsy. Stable, for example adults with cerebral palsy or post-polio syndrome. Progressive conditions that continue to deteriorate with increasing levels of disability, for example motor neurone disease, Parkinson’s disease, MS or Huntington’s disease. Different progressive neurological conditions, while having different causative factors, disease processes and rates of deterioration, ultimately make a significant impact on the quality of life of individuals and their families, often leading to increasing levels of disability, experienced at varying rates. The person’s growing physical disability may not only reduce physical functioning but also affect cognitive functioning and communication abilities. In some cases, the condition is life threatening. The increasing complexity of the neurological condition as it progresses will often require input from a range of health and social care professionals. Effective communication is essential for the provision of effective, person-centred and holistic care. In some cases the condition is hereditary, for example Huntington’s disease, so the patient is likely to have previously witnessed the disease trajectory of a family member. In most cases the condition develops spontaneously for no known reason, and the individual may, at the time of diagnosis, have no knowledge about the condition and how it will progress. Beginning at the time of diagnosis, it is essential that changes in an individual’s condition are recognised and managed by
FIGURE 1 Addressing fear using the advance care plan process Open honest discussion.
Re-establish control.
Replace ignorance with knowledge.
Plan.
Facilitate communication.
Make decisions.
carers in all settings. Caring for people with progressive neurological conditions can be challenging because of the variability of duration and unpredictability of the disease trajectory. Episodes of sudden death or rapid deterioration may occur in some conditions and some patients may be receiving highly specialised treatments. Cognitive and behavioural changes and deterioration in function can result in increasing levels of physical disability and significant problems with communication (National End of Life Care Programme 2011). Increasing disability and the potential for significant problems with cognition and communication can result in patients experiencing fear, frustration, anxiety and uncertainty (Breslow 2012). There is a clear need to discuss future care management and treatment interventions early on, and consider an advance care plan (Gabriel and Kennedy 2011). Fear can be addressed and, in some cases, reduced and alleviated by open and honest discussion, providing appropriate information and supporting the individual’s choice (Figure 1). Developing an individualised advance care plan while the patient is still physically able to communicate and has the cognitive abilities to do so, can enable some of his or her concerns and potential needs and treatment options to be identified, discussed and managed, pre-empting potential crises. Planning ahead allows the individual to make known his or her wishes about future care and have some control over the decision-making process. Complete time out activity 1
Advance care planning Nursing practice has for decades provided a framework for delivering holistic, effective and efficient care. A core component of this is an individualised, person-centred care plan, promoting continuity of care (Daniels et al 2010). Advance care planning is a more recent concept in nursing, that has been gaining increasing recognition. Advance care planning is a voluntary measure to help individuals with mental capacity (the ability to make a decision for him or herself) to plan and record their care and treatment preferences ahead of any anticipated changes in their condition. It enables the identification, discussion and review of a person’s wishes, which can be followed by those providing care, if in future the person
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loses the capacity to make these decisions. An advance decision to refuse treatment (ADRT) is a legally binding refusal of treatment as specified by the individual if he or she loses capacity and certain circumstances arise in the future (National End of Life Care Programme 2012a). An ADRT can be made if there are specific interventions that a person does not want in specific circumstances. Advance care planning can be used to inform others about the individual’s preferred choices in all aspects of care. It should be a voluntary process by which a person with mental capacity is enabled to identify his or her wishes to provide for a time in future when the person may be unable to make them known (Gabriel and Kennedy 2011). Advance care planning is often used when it is anticipated that an individual’s abilities will deteriorate because of a progressively deteriorating condition (Mullick et al 2013); this is often the case in progressive neurological conditions. A good advance care plan will ensure that the individual has been enabled to articulate his or her wishes and will be used in any decision making in relation to care and treatment if the person no longer has capacity to make decisions. The plan should reassure relatives and healthcare professionals that decisions being made are in line with a patient’s wishes (Bisson et al 2009). An advance care plan should not be used simply to inform others about decisions involving treatment interventions but should aim to identify the patient’s wishes about all aspects of care that are important to him or her. It should encompass physical, psychological, emotional, social, cultural and spiritual needs, as identified by the individual. Developing the advance care plan will provide the patient with opportunities to identify, consider, articulate and record priorities, preferences and goals in relation to care and treatment (Kite 2010). The plan cannot be used to demand particular treatments or care. Important factors in advance care planning are outlined in Box 1. While an advance care plan is not legally binding, it does have a legal standing and its contents should be considered and taken into account if an individual is not able to make his or her wishes known in the future and a best interest decision has to be made. The Mental Capacity Act 2005 provides a statutory and legally binding framework for individuals with capacity to complete an ADRT, as well as a legal framework for a Lasting Power of Attorney to be drawn up to enable an
individual with capacity to nominate a person or persons (attorney/s) to make decisions on his or her behalf in the future if he or she lacked capacity. The development of an advance care plan provides a framework, opportunity and time for discussion and reflection. It can aid understanding and clarification of information, and provide a forum for questioning (Kite 2010). It also expedites the provision of appropriate information to support informed choice. However, the amount and type of information provided should be considered carefully so that the individual does not feel overloaded or frightened. Arrangements should be made to enable future discussion and review of the information (National End of Life Care Programme 2012a). Advance care planning should be a dynamic, collaborative and ongoing process, not a one-off conversation (Emanuel et al 1995, Bunting-Perry 2006) or a ‘tick box’ exercise, and should not be driven by targets (Kite 2010, Seymour et al 2010). The plan should be reviewed as appropriate throughout the individual’s life (Gabriel and Kennedy 2011) (Figure 2). The healthcare professional’s role is to offer support and facilitate the process. Complete time out activity 2
Developing an advance care plan Developing an advance care plan may be led by the individual or initiated by those involved in his or her care; the timing of this will vary. The timing may be linked to the progression of the condition, or the plan may be made at diagnosis. Other events
2 Access The Differences Between General Care Planning and Decisions Made in Advance (National End of Life Care Programme 2012b). Make a list identifying the differences between a care plan, an advance care plan and a ‘do not attempt cardiopulmonary resuscitation’ order.
BOX 1 Important considerations in advance care planning The process should be voluntary. The person may want to discuss his or her wishes with carers, a partner and/or relatives. The individual should be encouraged to include anything he or she feels is important, no matter how trivial it seems. If an individual wishes to refuse a specific treatment, consider making an advance decision to refuse treatment – it is recommended that the advice of an experienced healthcare professional is sought in this case. If an advance decision that refuses a life-sustaining treatment is made, it must be put in writing, signed and witnessed, and reviewed. Advance care planning is a dynamic process, not a one-off conversation. Copies of the advance care plan should be given to individuals who need to know (as agreed by the person who has made the plan), and a circulation list should be kept to enable changes to be made. The advance care plan should be reviewed periodically to ensure it is still applicable. There is no legal recommendation regarding how often this should occur; it should be considered on a case-by-case basis.
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CPD person-centred care
3 Read your employer’s policy in relation to advance care planning, ADRT and do not attempt cardiopulmonary resuscitation orders. List the salient points and consider how these policies are used in your area of practice.
that may precipitate the development of an advance care plan include a significant life event, a change in treatment interventions or multiple hospital admissions (Department of Health (DH) 2008a). The development of an advance care plan supports patient choice (Klager et al 2008), and can alleviate concerns (Barnes et al 2007). It has been linked to feelings of increased individual autonomy and control, improved quality of life and coping (Davison and Simpson 2006), and reduced fear of death and the mechanism of death (Singer et al 1998). The advance care plan may also help to improve patient and family satisfaction (Billings 2012), reduce conflict (Klager et al 2008), and lessen levels of anxiety and stress after death for families. Developing an advance care plan with family involvement, if the patient agrees, can provide a forum for communication, enabling all individuals’ voices to be heard. In some cases, the views of family members about what they feel is best for the patient may be challenged; skill and sensitivity are required in facilitating such conversations. The process should be entirely voluntary, with no pressure from health or social care professionals, family members or organisations being exerted on the individual to complete an advance care plan (National End of Life Care Programme 2012a). Complete time out activity 3
FIGURE 2 Cyclical nature of the advance care planning process
Discussion
Reflection
Advance care planning Review
Clarification
Documentation
The process of advance care planning has been formally recognised by legislation in the United States as part of the Patient Self-Determination Act 1990 (Barnes et al 2007, Gabriel and Kennedy 2011). In the UK, the implementation of the Mental Capacity Act 2005 highlighted the concept, and advance care planning gained further recognition with the publication of the End of Life Care Strategy (DH 2008b). One recommendation of this strategy was the development and use of advance care planning at the end of life. While it is recommended that everyone is offered the opportunity to develop an advance care plan, nurses should recognise and respect the fact that not everyone will want to be involved in the process, for a range of reasons (Barnes et al 2007, Kite 2010). Reasons might include fear and uncertainty about treatment options or the disease trajectory, or inability to accept the diagnosis or to consider the future. Nurses should recognise that this situation may change over time, and it may be appropriate to reconsider later on. Fears of being abandoned by healthcare professionals (Kite 2010), that an advance care plan will affect access to active treatment or that it is a form of euthanasia (Bisson et al 2009) may also deter patients. Reassurance should be given that care and treatment interventions will continue to be provided in line with the patient’s wishes. Discussions in relation to advance care planning are confidential, but it should be emphasised to the individual that the information needs to be shared with appropriate persons, such as family members. This will ensure that the information in the advance care plan is acknowledged and acted on. Consent should always be obtained before sharing the information (Kite 2010). There is no set format for documenting a person’s wishes, although it is important that the style is not too rigid or prescriptive (National End of Life Care Programme 2012a). It may be useful to consider the questions outlined in Table 1 when supporting an individual completing an advance care plan. The use of open-ended questions to elicit information is a helpful strategy. For example, asking ‘What do you understand about what is happening to you?’ (Gabriel and Kennedy 2011) may start the discussion. There are several tools that can be used to help formulate and document the information. The document Preferred Priorities for Care (Lancashire and South Cumbria Cancer Network 2011)
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provides a framework for discussion and documentation of wishes and preferences. The effect of cultural, religious, spiritual and racial values and beliefs should always be taken into account, respected and addressed with
sensitivity when considering and discussing advance care planning (Barnes et al 2007, Billings 2012). Some individuals may believe they are ‘tempting fate’ by discussing these issues, and the end of life may be perceived
TABLE 1 Questions to consider in assisting a patient to complete an advance care plan Question
Further explanation
Is the person well enough to have the discussion?
If this is in doubt, reconvene the session.
Does the person want to have the discussion?
Remember that the process is voluntary.
Am I the right person?
Do you have the necessary skills? Are you in the right frame of mind?
Do I have the time for the conversation?
If not, plan a time to have the conversation.
Is this the right setting for this discussion to take place?
Consider the environment: is it private and free from distractions?
Is the individual having this discussion voluntarily, or is he or she being coerced or influenced by others?
If it is not voluntary, seek external assistance.
Do I understand the process?
If not, do not proceed; gain support to ensure the process is understood.
Do I understand the condition and treatment options, and have the necessary level of knowledge and expertise to discuss this?
It is important to understand the condition and future possible treatment and care options.
Am I aware of the prognosis of the condition and likely progression, and is the individual? Do I have the necessary level of knowledge and expertise to discuss this?
An understanding of the condition and future care needs is essential to ensure you can provide the appropriate information and answer questions reliably.
Do I know the individual’s social circumstances?
This is required to ensure that what an individual wants is feasible.
Do I possess the appropriate level of knowledge about local resources that can be accessed for this person?
Ensure you discuss the availability of resources – do not promise what cannot be achieved.
Do I possess an appropriate level of understanding about the process of advance care planning? Do I have the necessary level of knowledge and expertise to discuss this?
Do you need more training and support? Do you understand the process?
Does the individual have capacity to make these decisions? Do I have the necessary level of knowledge and expertise to assess this?
Remember that capacity can change and also that an individual may make choices that you may not agree with.
Do I understand the individual?
Support may be required to enhance communication.
Do I possess the appropriate communication skills?
Do you need more training and support?
Is there somebody else who may be more suitable to have this conversation?
Are you aware of your level of skills?
Do I have the individual’s agreement to share the information?
Individual consent is required to share the information with relevant parties.
What format will I use to record these discussions and share them?
Consider local policies and procedures. Remember that a refusal of life-sustaining treatments must be in writing, signed and witnessed, and contain the wording ‘even if life is at risk’.
Is the information in the advance care plan clear and unambiguous?
Is the information clear? Does it need to be reworded?
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CPD person-centred care
4 You have been asked by a person with a progressive neurological condition to help complete an advance care plan. With a colleague, discuss and list what you would need to be aware of when supporting the person to complete the plan.
as a taboo and frightening subject (Seymour et al 2010). Culture can be fundamental in how a person understands and deals with health, illness, suffering and ultimately death. Cultural values and beliefs may deter people from talking about death and dying, a factor that should also be considered. For example, an individuals’ reluctance to engage in discussing advance care plans and ADRTs because of religious beliefs should be respected. In such situations it may be appropriate to seek support from religious leaders, who can help the individual to interpret religious teachings and facilitate completion of an appropriate advance care plan. Garrido et al (2013) emphasise that the use of advance care plans and ADRTs are not precluded by most religious denominations, although there may be recommendations relating to the types of treatment intervention that can be refused, accessed or prohibited. Clinicians involved in supporting patients to complete an advance care plan need to be aware of their own feelings in relation to death and dying (Gabriel and Kennedy 2011), as well as their values, beliefs and any possible bias. ‘Knowing’ the patient is a fundamental component of good care (Wilson et al 2011). It is essential that, when assisting an individual to complete an advance care plan, the healthcare professional possesses appropriate levels of knowledge, skills and sensitivity (Kite 2010). These attributes are required in discussing how the condition may affect the individual in the future, and in enabling the provision of appropriate and relevant information to support the decision-making process (Davison and Simpson 2006). Barriers to advance care planning include reluctance on the part of healthcare professionals to initiate discussions in case they cause distress. However, patients with a range of conditions have often welcomed early discussions (Davison and Simpson 2006, Bisson et al 2009), indicating that they felt the conversations should be initiated by healthcare professionals, and that they wanted this involvement and support (Kolarik et al 2002). A lack of training in advance care planning has left some healthcare professionals feeling ill-equipped to conduct the necessary conversations. In addition to understanding the relevant condition, healthcare professionals should be aware of the advance care planning process, local polices and documentation, and the law in relation to mental capacity (Mullick et al 2013). Other barriers to
completing an advance care plan include a lack of resources, specifically the time to facilitate and support conversations and to develop an individualised plan (Seymour et al 2010). The disease trajectory and rate of progression for people with a progressive neurological condition will vary. However, there may be interventions to discuss that are common to all patients, such as the following: Where a person wishes to be cared for. Alternative methods of feeding, such as enteral feeding. Active cardiopulmonary resuscitation in the event of cardiac or respiratory arrest. Antibiotic therapy. Respiratory support using a ventilator, and possible withdrawal of that support. Communication abilities – not just the spoken word but also word finding, processing information and expressing choices – may become increasingly compromised in progressive neurological conditions. It may be necessary to involve speech and language therapists to provide guidance in identifying the most appropriate method of communication. Early discussions about advance care planning are entirely appropriate and should be encouraged, while not forcing the issue, but the process when a patient has significant communication problems can be challenging, tiring, time consuming and frustrating for him or her (Wilson et al 2011). Great skill and support are required from the professionals involved to ensure that the individual’s wishes are understood. An advance care plan cannot be used to request anything that is illegal. The law in England, Wales and Scotland makes it illegal to perform deliberate or ‘active’ euthanasia, and will usually consider anyone assisting suicide or death liable for a charge of murder. Active euthanasia occurs when treatment is administered with the intention of ending the patient’s life. The Royal College of Nursing (2011) has produced comprehensive guidance on responding to a request to hasten death. Complete time out activity 4 The needs of carers should also be considered, with appropriate support, since the process of advance care planning can be highly emotive (Bunting-Perry 2006).
Mental capacity In some progressive neurological conditions, the ongoing deterioration affects cognitive
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abilities. The person’s ability to make decisions about aspects of their care may become increasingly compromised. The Mental Capacity Act 2005 has five key principles (Box 2). The act recommends that, for an individual to be assessed as having mental capacity, he or she should be able to: Understand the information given. Retain that information long enough to be able to make the decision. Assess the information available to make the decision. Communicate his or her decision. Capacity is determined on a decision-specific basis. Therefore, just because an individual is not able to make decisions about all aspects of care does not mean that he or she lacks capacity for all decisions in relation to his or her care. It is also important to remember that people are able to make what you may deem an unwise decision if they have mental capacity. According to the Mental Capacity Act 2005, an individual who lacks the mental capacity to make a decision in relation to planning care should have a ‘best interest’ decision made for him or her, in consultation with the person’s family and primary healthcare providers. Some individuals found to lack capacity in relation to treatment interventions or longer term placement in a care home or hospital may have no close family or friends, or there may be differing opinions about their care. In such cases, the act recommends arranging an independent mental capacity advocate to make decisions that protect the interests of the individual.
BOX 2 Key principles of the Mental Capacity Act 2005 1. A person must be assumed to have capacity unless it is established that he or she lacks capacity. 2. A person is not to be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success. 3. A person is not to be treated as unable to make a decision merely because he or she makes an unwise decision. 4. An act done, or a decision made, under this act for or on behalf of a person who lacks capacity must be done, or made, in his best interests (Section 4). 5. Before the act is done, or the decision is made, regard must be given to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
The introduction of the Mental Capacity Act 2005 has legalised and formalised the way people can plan for future care if they lose capacity. There are three ways to achieve this: 1. Completing an ADRT or drawing up advance statements of feelings and wishes – often incorporated in an individual’s advance care plan. 2. Nominating persons to act on his or her behalf by having a Lasting Power of Attorney. 3. Using the Preferred Priorities for Care document (DH 2008b, Lancashire and South Cumbria Cancer Network 2011). Complete time out activity 5
Advance decisions to refuse treatment
As already stated, an ADRT, previously known as a living will or an advance directive, is a legally binding document, refusing specified treatment or treatments if the individual loses capacity in the future and particular circumstances arise (National End of Life Care Programme 2012a). In other words, an ADRT is useful when there are specific interventions that a person does not want if specific circumstances arise in the future. No specific format is required, but the ADRT must be in writing, must be witnessed and, if life-sustaining treatment such as cardiopulmonary resuscitation is being refused, must include the wording ‘even if life is at risk’ (Department for Constitutional Affairs 2007). An ADRT cannot be used to refuse basic care such as warmth, shelter, the offer of food and fluid, hygiene and comfort measures. Bisson et al (2009) suggest that an ADRT should be short and easy to follow, unambiguous, with space for personal statements. It should also include information on wishes in relation to refusal of life-sustaining treatments, future care location, capacity assessment, witness details and also a distribution list. Questions that are often used to help individuals to draw up an ADRT include: Do you wish to be resuscitated in the event of cardiac or respiratory arrest? Would you wish to receive invasive ventilation? Would you wish to have medication to keep you comfortable? Would you wish to receive antibiotic therapy? Would you wish to have alternative methods of feeding, such as a percutaneous endoscopic gastrostomy tube? Where would you wish to be cared for – including would you be willing to go into hospital?
5 Access Making Decisions: A Guide for People who Work in Health and Social Care (Mental Capacity Implementation Programme 2006) and review Section 6, Assessing Capacity, pages 17-20. Reflect on whether this may affect your practice. Develop a resource that could be used in your area of work to outline the essential principles of assessing mental capacity.
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CPD person-centred care Who would you want to be informed of your decisions? The ADRT should be signed and witnessed, and a list should be made of those to whom it is to be circulated. The format of this document provides a forum for further discussion in relation to interventions and the identification and support of an individual’s wishes. To complete an ADRT, the individual must be aged over 18 years and have capacity to make the decisions at the time; the consequences of the decisions must be understood by the individual and the decisions should not have been made under duress. It is considered good practice to review an individual’s ADRT and to document that the review has been undertaken, although there are no specific recommendations for how often a review should be undertaken. The potential consequences of knowingly ignoring a valid ADRT are the criminal charge of assault, a possible civil claim and the breach of the individual’s human rights (Article 8 of the European Convention on Human Rights: Right to a Private Life). The exception to this is if an individual is detained under the Mental Health Act 1983, when he or she can be treated without consent for a mental health disorder even if such treatment has been refused in an ADRT. However, the Mental Capacity Act 2005 also states that, if a care provider has moral or religious objections to an ADRT, he or she is not forced to act on it. In this case, the caregiver should ensure his or her objections are highlighted as soon as possible to allow the transfer of care to an alternative health care professional. An ADRT cannot be used to request treatments or care. Such preferences should be
USEFUL RESOURCES Advance Decisions to Refuse Treatment – training programme: www.adrt.nhs.uk Dying Matters: http://dyingmatters.org Huntington’s Disease Association: http://hda.org.uk Motor Neurone Disease Association: www.mndassociation.org Multiple Sclerosis Society: www.mssociety.org.uk Multiple Sclerosis Trust: www.mstrust.org.uk Multiple System Atrophy Trust: www.msatrust.org.uk National End of Life Care Programme (the programme is now closed; however, information is available on the archived website): www.nhsiq.nhs.uk/legacy-websites/end-of-life-care.aspx National Institute of Neurological Disorders and Stroke (United States): www.ninds.nih.gov Neurological Alliance: www.neural.org.uk Parkinson’s UK: www.parkinsons.org.uk Progressive Supranuclear Palsy Association: www.pspassociation.org.uk
outlined in a statement of wishes or Preferred Priorities for Care document (Lancashire and South Cumbria Cancer Network 2011). An ADRT, when it is valid and applicable to the circumstances, and has not been altered verbally or in writing since it was made, altered or reviewed, will preclude the need for a best interest decision to be made if the individual lacks capacity.
Lasting Power of Attorney
The Mental Capacity Act 2005 introduced a new type of power of attorney, in which an individual aged 18 years or over could nominate someone to act on his or her behalf in the future if he or she lacked capacity. The Lasting Power of Attorney can be used when an individual (the donor) nominates another or others (attorney/s) to act in his or her best interests in decision making in relation to personal welfare including health, and/or property and financial affairs. An individual can nominate attorneys for either one or both of the categories. A Lasting Power of Attorney directive made after an ADRT will invalidate the ADRT if the Lasting Power of Attorney gives the attorney the authority to make decisions about the same treatment. An attorney will have the authority to make decisions relating to life-sustaining treatments only if this has been specified in the Lasting Power of Attorney.
Personal considerations for advance care planning The advance care planning process can be emotional and difficult, and it is important that the people facilitating conversations can gain support from their organisations and have opportunities to reflect on the conversations and processes. Appropriate clinical supervision and support are vital (Seymour et al 2010), as are recognition and respect that there may be times in a person’s life when it is not appropriate for him or her to be involved in these types of discussion.
Conclusion Advance care planning for people with progressive neurological conditions should be a fundamental, but voluntary, component of care. It is appropriate for nurses, with the appropriate training, knowledge and support, to initiate and facilitate the process of advance care planning.
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Early consideration of an advance care plan is essential for people with progressive neurological conditions because of the potential cognitive and communication problems that may develop as conditions progress. There is no ‘right way’, and each individual will have differing requirements and considerations. Some patients may discuss advance care planning more easily than others; some people may never want to discuss or complete an advance care plan. These differences should be respected. The development of an advance care plan can, however, ensure that the care provided
for the individual respects his or her wishes, and reduces the burden on the family of making complex and difficult decisions. An advance care plan can also contribute to effective communication within a multidisciplinary team, with all involved being aware of and committed to fulfilling the individual’s choices. The Mental Capacity Act 2005 has provided a legal framework to be considered when developing advance care plans, and any care decisions made should include due consideration of this legislation NS Complete time out activity 6
6 Now that you have completed the article, you might like to write a reflective account. Guidelines to help you are on page 62.
References Barnes K, Jones L, Tookman A, King M (2007) Acceptability of an advance care planning interview schedule: a focus group study. Palliative Medicine. 21, 1, 23-28. Billings JA (2012) The need for safeguards in advance care planning. Journal of General Internal Medicine. 27, 5, 595-600. Bisson J, Hampton V, Rosser A, Holm S (2009) Developing a care pathway for advance decisions and powers of attorney: qualitative study. British Journal of Psychiatry. 194, 55-61. Breslow D (2012) Social workers. In What Every… Social Worker, Physical Therapist, Occupational Therapist, Speech-Language Pathologist Should Know About: Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), Multiple System Atrophy (MSA). CurePSP, Timonium MD, 3. Bunting-Perry LK (2006) Palliative care in Parkinson’s disease: implications for neuroscience nursing. Journal of Neuroscience Nursing. 38, 2, 106-113. Daniels R, Grendell R, Wilkins F (2010) Nursing Fundamentals: Caring and Clinical Decision Making. Second edition. Cengage Learning, New York NY. Davison SN, Simpson C (2006) Hope and advance care planning in patients with end stage renal disease: qualitative interview study. British Medical Journal. 333, 7574, 886.
Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice. The Stationery Office, London. Department of Health (2008a) Advance Care Planning: A Guide for Health and Social Care Staff. www. ncpc.org.uk/sites/default/files/ AdvanceCarePlanning.pdf (Last accessed: December 22 2014.) Department of Health (2008b) End of Life Care Strategy. Promoting High Quality Care for All Adults at the End of Life. The Stationery Office, London. Emanuel LL, Danis M, Pearlman RA, Singer P (1995) Advance care planning as a process: structuring the discussions in practice. Journal of the American Geriatrics Society. 43, 40, 440-446. Gabriel MS, Kennedy S (2011) Advance care planning. In Qualls SH, Kasl-Godley J (Eds) End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know. John Wiley & Sons, Hoboken NJ, 116-127. Garrido MM, Idler LE, Leventhal H, Carr D (2013) Pathways from religion to advance care planning: beliefs about control over length of life and end-of-life values. The Gerontologist. 53, 5, 801-816. Kite S (2010) Advance care planning. Clinical Medicine. 10, 3, 275-278. Klager J, Duckett A, Sandler S, Moskowitz C (2008) Huntington’s disease: a caring approach to the
end of life. Care Management Journals. 9, 2, 75-81. Kolarik RC, Arnold RA, Fischer GS, Hanusa BH (2002) Advance care planning. A comparison of values statements and treatment preferences. Journal of General Internal Medicine. 17, 8, 618-624. Lancashire and South Cumbria Cancer Network (2011) Preferred Priorities for Care. www.nhsiq.nhs. uk/resource-search/publications/ eolc-ppc.aspx (Last accessed: December 22 2014.) Mental Capacity Implementation Programme (2006) Making Decisions: A Guide for People who Work in Health and Social Care. tinyurl.com/lren9cg (Last accessed: December 23 2014.) Mullick A, Martin J, Sallnow L (2013) An introduction to advance care planning in practice. British Medical Journal. 347, f6064. National Audit Office (2011) Services for People with Neurological Conditions. www.nao.org.uk/wp-content/ uploads/2011/12/10121586.pdf (Last accessed: December 22 2014.) National End of Life Care Programme (2011) End of Life Care in Long Term Neurological Conditions: A Framework for Implementation. tinyurl.com/ m42mdut (Last accessed: December 22 2014.) National End of Life Care Programme (2012a) Capacity Care Planning and Advance Care Planning in Life Limiting Illness. A Guide for
Health and Social Care Staff. www. ncpc.org.uk/sites/default/files/ ACP_Booklet_June_2011.pdf (Last accessed: December 22 2014.) National End of Life Care Programme (2012b) The Differences Between General Care Planning and Decisions Made in Advance. www.nhsiq. nhs.uk/8595.aspx (Last accessed: December 23 2014.) Neurological Alliance (2014) Measuring Up: Improving the Collection of Neurological Data and Intelligence. tinyurl.com/o27zhd9 (Last accessed: December 22 2014.) Royal College of Nursing (2011) When Someone Asks for Your Assistance to Die: RCN Guidance on Responding to a Request to Hasten Death. www.rcn.org.uk/ __data/assets/pdf_file/0004/ 410638/004167.pdf (Last accessed: December 22 2014.) Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliative Care. 9, 4. Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M, Mendelssohn D (1998) Reconceptualizing advance care planning from the patient’s perspective. Archives of Internal Medicine. 158, 8, 879-884. Wilson E, Seymour J, Aubeeluck A (2011) Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions. Palliative and Supportive Care. 9, 4, 377-385.
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Prepare for revalidation: read this CPD article and write a reflective account http://revalidation.zone
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CONTINUING PROFESSIONAL DEVELOPMENT
Progressive neurological conditions multiple choice questionnaire
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Read Balvinder Thiara’s reflective account on suicidal intent
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Guidelines on how to write a reflective account
Advance care planning in progressive neurological conditions NS777 Kent A (2015) Advance care planning in progressive neurological conditions. Nursing Standard. 29, 21, 51-59. Date of submission: June 3 2014; date of acceptance: September 29 2014.
Aims and intended learning outcomes
Abstract Advance care planning in progressive neurological conditions is an essential part of care, allowing individuals to make decisions and record their wishes regarding the care they receive in the future. Nurses are ideally placed to become involved in this process and should understand how they can assist patients, carers and families through a dynamic process of consultation and discussion. This article considers the process of advance care planning in relation to progressive neurological conditions and discusses how the Mental Capacity Act 2005 provides the legislation within which professionals must work.
Author Anna Kent Neurological conditions clinical specialist, Neurological Conditions Clinical Specialist Team, Milton Keynes Community Health Services – Central and North West London NHS Foundation Trust, Milton Keynes, England. Correspondence to: [email protected]
The aim of this article is to provide an overview of advance care planning and its use when caring for people with progressive neurological conditions. It discusses the processes involved in advance care planning and the legislation that supports it. After reading this article and completing the time out activities you should be able to: Describe the benefits of advance care planning. Outline the problems associated with advance care planning for people with progressive neurological conditions. Identify and be able to source appropriate resources to support the development of an advance care plan. Discuss the importance of the Mental Capacity Act 2005 in relation to advance care planning.
Keywords Advance care planning, advance decision to refuse treatment, End of Life Care Programme, Huntington’s disease, Lasting Power of Attorney, Mental Capacity Act 2005, neurological conditions, Parkinson’s disease
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. To write a CPD article: please email [email protected] Guidelines on writing for publication are available at: rcnpublishing.com/r/author-guidelines
Introduction This article considers the development of advance care planning, and its use in the support of people with progressive neurological conditions. Advance care planning should not be considered solely for individuals with a life-limiting condition (Emanuel et al 1995). The process is equally transferable and applicable to other areas of care and could be useful for the population as a whole. Nurses who have the appropriate skills and knowledge have a role in helping a patient develop an advance care plan. There are an estimated 12.5 million people in the UK with a neurological condition that is usually lifelong and largely not preventable (Neurological Alliance 2014). Neurological
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CPD person-centred care
1 Watch the short film I Didn’t Want That (http://dyingmatters. org/page/i-didnt-wantthat) and reflect on how not making wishes known can affect an individual’s care and those close to him or her.
conditions are disorders that affect normal functioning of the nervous system, which includes the brain, spinal cord and peripheral nerves. Types of neurological condition can be categorised loosely into further subgroups (National Audit Office 2011): Sudden onset, for example spinal cord injury, acquired brain injury or stroke. Unpredictable and intermittent, for example relapsing-remitting multiple sclerosis (MS) or epilepsy. Stable, for example adults with cerebral palsy or post-polio syndrome. Progressive conditions that continue to deteriorate with increasing levels of disability, for example motor neurone disease, Parkinson’s disease, MS or Huntington’s disease. Different progressive neurological conditions, while having different causative factors, disease processes and rates of deterioration, ultimately make a significant impact on the quality of life of individuals and their families, often leading to increasing levels of disability, experienced at varying rates. The person’s growing physical disability may not only reduce physical functioning but also affect cognitive functioning and communication abilities. In some cases, the condition is life threatening. The increasing complexity of the neurological condition as it progresses will often require input from a range of health and social care professionals. Effective communication is essential for the provision of effective, person-centred and holistic care. In some cases the condition is hereditary, for example Huntington’s disease, so the patient is likely to have previously witnessed the disease trajectory of a family member. In most cases the condition develops spontaneously for no known reason, and the individual may, at the time of diagnosis, have no knowledge about the condition and how it will progress. Beginning at the time of diagnosis, it is essential that changes in an individual’s condition are recognised and managed by
FIGURE 1 Addressing fear using the advance care plan process Open honest discussion.
Re-establish control.
Replace ignorance with knowledge.
Plan.
Facilitate communication.
Make decisions.
carers in all settings. Caring for people with progressive neurological conditions can be challenging because of the variability of duration and unpredictability of the disease trajectory. Episodes of sudden death or rapid deterioration may occur in some conditions and some patients may be receiving highly specialised treatments. Cognitive and behavioural changes and deterioration in function can result in increasing levels of physical disability and significant problems with communication (National End of Life Care Programme 2011). Increasing disability and the potential for significant problems with cognition and communication can result in patients experiencing fear, frustration, anxiety and uncertainty (Breslow 2012). There is a clear need to discuss future care management and treatment interventions early on, and consider an advance care plan (Gabriel and Kennedy 2011). Fear can be addressed and, in some cases, reduced and alleviated by open and honest discussion, providing appropriate information and supporting the individual’s choice (Figure 1). Developing an individualised advance care plan while the patient is still physically able to communicate and has the cognitive abilities to do so, can enable some of his or her concerns and potential needs and treatment options to be identified, discussed and managed, pre-empting potential crises. Planning ahead allows the individual to make known his or her wishes about future care and have some control over the decision-making process. Complete time out activity 1
Advance care planning Nursing practice has for decades provided a framework for delivering holistic, effective and efficient care. A core component of this is an individualised, person-centred care plan, promoting continuity of care (Daniels et al 2010). Advance care planning is a more recent concept in nursing, that has been gaining increasing recognition. Advance care planning is a voluntary measure to help individuals with mental capacity (the ability to make a decision for him or herself) to plan and record their care and treatment preferences ahead of any anticipated changes in their condition. It enables the identification, discussion and review of a person’s wishes, which can be followed by those providing care, if in future the person
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loses the capacity to make these decisions. An advance decision to refuse treatment (ADRT) is a legally binding refusal of treatment as specified by the individual if he or she loses capacity and certain circumstances arise in the future (National End of Life Care Programme 2012a). An ADRT can be made if there are specific interventions that a person does not want in specific circumstances. Advance care planning can be used to inform others about the individual’s preferred choices in all aspects of care. It should be a voluntary process by which a person with mental capacity is enabled to identify his or her wishes to provide for a time in future when the person may be unable to make them known (Gabriel and Kennedy 2011). Advance care planning is often used when it is anticipated that an individual’s abilities will deteriorate because of a progressively deteriorating condition (Mullick et al 2013); this is often the case in progressive neurological conditions. A good advance care plan will ensure that the individual has been enabled to articulate his or her wishes and will be used in any decision making in relation to care and treatment if the person no longer has capacity to make decisions. The plan should reassure relatives and healthcare professionals that decisions being made are in line with a patient’s wishes (Bisson et al 2009). An advance care plan should not be used simply to inform others about decisions involving treatment interventions but should aim to identify the patient’s wishes about all aspects of care that are important to him or her. It should encompass physical, psychological, emotional, social, cultural and spiritual needs, as identified by the individual. Developing the advance care plan will provide the patient with opportunities to identify, consider, articulate and record priorities, preferences and goals in relation to care and treatment (Kite 2010). The plan cannot be used to demand particular treatments or care. Important factors in advance care planning are outlined in Box 1. While an advance care plan is not legally binding, it does have a legal standing and its contents should be considered and taken into account if an individual is not able to make his or her wishes known in the future and a best interest decision has to be made. The Mental Capacity Act 2005 provides a statutory and legally binding framework for individuals with capacity to complete an ADRT, as well as a legal framework for a Lasting Power of Attorney to be drawn up to enable an
individual with capacity to nominate a person or persons (attorney/s) to make decisions on his or her behalf in the future if he or she lacked capacity. The development of an advance care plan provides a framework, opportunity and time for discussion and reflection. It can aid understanding and clarification of information, and provide a forum for questioning (Kite 2010). It also expedites the provision of appropriate information to support informed choice. However, the amount and type of information provided should be considered carefully so that the individual does not feel overloaded or frightened. Arrangements should be made to enable future discussion and review of the information (National End of Life Care Programme 2012a). Advance care planning should be a dynamic, collaborative and ongoing process, not a one-off conversation (Emanuel et al 1995, Bunting-Perry 2006) or a ‘tick box’ exercise, and should not be driven by targets (Kite 2010, Seymour et al 2010). The plan should be reviewed as appropriate throughout the individual’s life (Gabriel and Kennedy 2011) (Figure 2). The healthcare professional’s role is to offer support and facilitate the process. Complete time out activity 2
Developing an advance care plan Developing an advance care plan may be led by the individual or initiated by those involved in his or her care; the timing of this will vary. The timing may be linked to the progression of the condition, or the plan may be made at diagnosis. Other events
2 Access The Differences Between General Care Planning and Decisions Made in Advance (National End of Life Care Programme 2012b). Make a list identifying the differences between a care plan, an advance care plan and a ‘do not attempt cardiopulmonary resuscitation’ order.
BOX 1 Important considerations in advance care planning The process should be voluntary. The person may want to discuss his or her wishes with carers, a partner and/or relatives. The individual should be encouraged to include anything he or she feels is important, no matter how trivial it seems. If an individual wishes to refuse a specific treatment, consider making an advance decision to refuse treatment – it is recommended that the advice of an experienced healthcare professional is sought in this case. If an advance decision that refuses a life-sustaining treatment is made, it must be put in writing, signed and witnessed, and reviewed. Advance care planning is a dynamic process, not a one-off conversation. Copies of the advance care plan should be given to individuals who need to know (as agreed by the person who has made the plan), and a circulation list should be kept to enable changes to be made. The advance care plan should be reviewed periodically to ensure it is still applicable. There is no legal recommendation regarding how often this should occur; it should be considered on a case-by-case basis.
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CPD person-centred care
3 Read your employer’s policy in relation to advance care planning, ADRT and do not attempt cardiopulmonary resuscitation orders. List the salient points and consider how these policies are used in your area of practice.
that may precipitate the development of an advance care plan include a significant life event, a change in treatment interventions or multiple hospital admissions (Department of Health (DH) 2008a). The development of an advance care plan supports patient choice (Klager et al 2008), and can alleviate concerns (Barnes et al 2007). It has been linked to feelings of increased individual autonomy and control, improved quality of life and coping (Davison and Simpson 2006), and reduced fear of death and the mechanism of death (Singer et al 1998). The advance care plan may also help to improve patient and family satisfaction (Billings 2012), reduce conflict (Klager et al 2008), and lessen levels of anxiety and stress after death for families. Developing an advance care plan with family involvement, if the patient agrees, can provide a forum for communication, enabling all individuals’ voices to be heard. In some cases, the views of family members about what they feel is best for the patient may be challenged; skill and sensitivity are required in facilitating such conversations. The process should be entirely voluntary, with no pressure from health or social care professionals, family members or organisations being exerted on the individual to complete an advance care plan (National End of Life Care Programme 2012a). Complete time out activity 3
FIGURE 2 Cyclical nature of the advance care planning process
Discussion
Reflection
Advance care planning Review
Clarification
Documentation
The process of advance care planning has been formally recognised by legislation in the United States as part of the Patient Self-Determination Act 1990 (Barnes et al 2007, Gabriel and Kennedy 2011). In the UK, the implementation of the Mental Capacity Act 2005 highlighted the concept, and advance care planning gained further recognition with the publication of the End of Life Care Strategy (DH 2008b). One recommendation of this strategy was the development and use of advance care planning at the end of life. While it is recommended that everyone is offered the opportunity to develop an advance care plan, nurses should recognise and respect the fact that not everyone will want to be involved in the process, for a range of reasons (Barnes et al 2007, Kite 2010). Reasons might include fear and uncertainty about treatment options or the disease trajectory, or inability to accept the diagnosis or to consider the future. Nurses should recognise that this situation may change over time, and it may be appropriate to reconsider later on. Fears of being abandoned by healthcare professionals (Kite 2010), that an advance care plan will affect access to active treatment or that it is a form of euthanasia (Bisson et al 2009) may also deter patients. Reassurance should be given that care and treatment interventions will continue to be provided in line with the patient’s wishes. Discussions in relation to advance care planning are confidential, but it should be emphasised to the individual that the information needs to be shared with appropriate persons, such as family members. This will ensure that the information in the advance care plan is acknowledged and acted on. Consent should always be obtained before sharing the information (Kite 2010). There is no set format for documenting a person’s wishes, although it is important that the style is not too rigid or prescriptive (National End of Life Care Programme 2012a). It may be useful to consider the questions outlined in Table 1 when supporting an individual completing an advance care plan. The use of open-ended questions to elicit information is a helpful strategy. For example, asking ‘What do you understand about what is happening to you?’ (Gabriel and Kennedy 2011) may start the discussion. There are several tools that can be used to help formulate and document the information. The document Preferred Priorities for Care (Lancashire and South Cumbria Cancer Network 2011)
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provides a framework for discussion and documentation of wishes and preferences. The effect of cultural, religious, spiritual and racial values and beliefs should always be taken into account, respected and addressed with
sensitivity when considering and discussing advance care planning (Barnes et al 2007, Billings 2012). Some individuals may believe they are ‘tempting fate’ by discussing these issues, and the end of life may be perceived
TABLE 1 Questions to consider in assisting a patient to complete an advance care plan Question
Further explanation
Is the person well enough to have the discussion?
If this is in doubt, reconvene the session.
Does the person want to have the discussion?
Remember that the process is voluntary.
Am I the right person?
Do you have the necessary skills? Are you in the right frame of mind?
Do I have the time for the conversation?
If not, plan a time to have the conversation.
Is this the right setting for this discussion to take place?
Consider the environment: is it private and free from distractions?
Is the individual having this discussion voluntarily, or is he or she being coerced or influenced by others?
If it is not voluntary, seek external assistance.
Do I understand the process?
If not, do not proceed; gain support to ensure the process is understood.
Do I understand the condition and treatment options, and have the necessary level of knowledge and expertise to discuss this?
It is important to understand the condition and future possible treatment and care options.
Am I aware of the prognosis of the condition and likely progression, and is the individual? Do I have the necessary level of knowledge and expertise to discuss this?
An understanding of the condition and future care needs is essential to ensure you can provide the appropriate information and answer questions reliably.
Do I know the individual’s social circumstances?
This is required to ensure that what an individual wants is feasible.
Do I possess the appropriate level of knowledge about local resources that can be accessed for this person?
Ensure you discuss the availability of resources – do not promise what cannot be achieved.
Do I possess an appropriate level of understanding about the process of advance care planning? Do I have the necessary level of knowledge and expertise to discuss this?
Do you need more training and support? Do you understand the process?
Does the individual have capacity to make these decisions? Do I have the necessary level of knowledge and expertise to assess this?
Remember that capacity can change and also that an individual may make choices that you may not agree with.
Do I understand the individual?
Support may be required to enhance communication.
Do I possess the appropriate communication skills?
Do you need more training and support?
Is there somebody else who may be more suitable to have this conversation?
Are you aware of your level of skills?
Do I have the individual’s agreement to share the information?
Individual consent is required to share the information with relevant parties.
What format will I use to record these discussions and share them?
Consider local policies and procedures. Remember that a refusal of life-sustaining treatments must be in writing, signed and witnessed, and contain the wording ‘even if life is at risk’.
Is the information in the advance care plan clear and unambiguous?
Is the information clear? Does it need to be reworded?
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CPD person-centred care
4 You have been asked by a person with a progressive neurological condition to help complete an advance care plan. With a colleague, discuss and list what you would need to be aware of when supporting the person to complete the plan.
as a taboo and frightening subject (Seymour et al 2010). Culture can be fundamental in how a person understands and deals with health, illness, suffering and ultimately death. Cultural values and beliefs may deter people from talking about death and dying, a factor that should also be considered. For example, an individuals’ reluctance to engage in discussing advance care plans and ADRTs because of religious beliefs should be respected. In such situations it may be appropriate to seek support from religious leaders, who can help the individual to interpret religious teachings and facilitate completion of an appropriate advance care plan. Garrido et al (2013) emphasise that the use of advance care plans and ADRTs are not precluded by most religious denominations, although there may be recommendations relating to the types of treatment intervention that can be refused, accessed or prohibited. Clinicians involved in supporting patients to complete an advance care plan need to be aware of their own feelings in relation to death and dying (Gabriel and Kennedy 2011), as well as their values, beliefs and any possible bias. ‘Knowing’ the patient is a fundamental component of good care (Wilson et al 2011). It is essential that, when assisting an individual to complete an advance care plan, the healthcare professional possesses appropriate levels of knowledge, skills and sensitivity (Kite 2010). These attributes are required in discussing how the condition may affect the individual in the future, and in enabling the provision of appropriate and relevant information to support the decision-making process (Davison and Simpson 2006). Barriers to advance care planning include reluctance on the part of healthcare professionals to initiate discussions in case they cause distress. However, patients with a range of conditions have often welcomed early discussions (Davison and Simpson 2006, Bisson et al 2009), indicating that they felt the conversations should be initiated by healthcare professionals, and that they wanted this involvement and support (Kolarik et al 2002). A lack of training in advance care planning has left some healthcare professionals feeling ill-equipped to conduct the necessary conversations. In addition to understanding the relevant condition, healthcare professionals should be aware of the advance care planning process, local polices and documentation, and the law in relation to mental capacity (Mullick et al 2013). Other barriers to
completing an advance care plan include a lack of resources, specifically the time to facilitate and support conversations and to develop an individualised plan (Seymour et al 2010). The disease trajectory and rate of progression for people with a progressive neurological condition will vary. However, there may be interventions to discuss that are common to all patients, such as the following: Where a person wishes to be cared for. Alternative methods of feeding, such as enteral feeding. Active cardiopulmonary resuscitation in the event of cardiac or respiratory arrest. Antibiotic therapy. Respiratory support using a ventilator, and possible withdrawal of that support. Communication abilities – not just the spoken word but also word finding, processing information and expressing choices – may become increasingly compromised in progressive neurological conditions. It may be necessary to involve speech and language therapists to provide guidance in identifying the most appropriate method of communication. Early discussions about advance care planning are entirely appropriate and should be encouraged, while not forcing the issue, but the process when a patient has significant communication problems can be challenging, tiring, time consuming and frustrating for him or her (Wilson et al 2011). Great skill and support are required from the professionals involved to ensure that the individual’s wishes are understood. An advance care plan cannot be used to request anything that is illegal. The law in England, Wales and Scotland makes it illegal to perform deliberate or ‘active’ euthanasia, and will usually consider anyone assisting suicide or death liable for a charge of murder. Active euthanasia occurs when treatment is administered with the intention of ending the patient’s life. The Royal College of Nursing (2011) has produced comprehensive guidance on responding to a request to hasten death. Complete time out activity 4 The needs of carers should also be considered, with appropriate support, since the process of advance care planning can be highly emotive (Bunting-Perry 2006).
Mental capacity In some progressive neurological conditions, the ongoing deterioration affects cognitive
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abilities. The person’s ability to make decisions about aspects of their care may become increasingly compromised. The Mental Capacity Act 2005 has five key principles (Box 2). The act recommends that, for an individual to be assessed as having mental capacity, he or she should be able to: Understand the information given. Retain that information long enough to be able to make the decision. Assess the information available to make the decision. Communicate his or her decision. Capacity is determined on a decision-specific basis. Therefore, just because an individual is not able to make decisions about all aspects of care does not mean that he or she lacks capacity for all decisions in relation to his or her care. It is also important to remember that people are able to make what you may deem an unwise decision if they have mental capacity. According to the Mental Capacity Act 2005, an individual who lacks the mental capacity to make a decision in relation to planning care should have a ‘best interest’ decision made for him or her, in consultation with the person’s family and primary healthcare providers. Some individuals found to lack capacity in relation to treatment interventions or longer term placement in a care home or hospital may have no close family or friends, or there may be differing opinions about their care. In such cases, the act recommends arranging an independent mental capacity advocate to make decisions that protect the interests of the individual.
BOX 2 Key principles of the Mental Capacity Act 2005 1. A person must be assumed to have capacity unless it is established that he or she lacks capacity. 2. A person is not to be treated as unable to make a decision unless all practicable steps to help him or her to do so have been taken without success. 3. A person is not to be treated as unable to make a decision merely because he or she makes an unwise decision. 4. An act done, or a decision made, under this act for or on behalf of a person who lacks capacity must be done, or made, in his best interests (Section 4). 5. Before the act is done, or the decision is made, regard must be given to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.
The introduction of the Mental Capacity Act 2005 has legalised and formalised the way people can plan for future care if they lose capacity. There are three ways to achieve this: 1. Completing an ADRT or drawing up advance statements of feelings and wishes – often incorporated in an individual’s advance care plan. 2. Nominating persons to act on his or her behalf by having a Lasting Power of Attorney. 3. Using the Preferred Priorities for Care document (DH 2008b, Lancashire and South Cumbria Cancer Network 2011). Complete time out activity 5
Advance decisions to refuse treatment
As already stated, an ADRT, previously known as a living will or an advance directive, is a legally binding document, refusing specified treatment or treatments if the individual loses capacity in the future and particular circumstances arise (National End of Life Care Programme 2012a). In other words, an ADRT is useful when there are specific interventions that a person does not want if specific circumstances arise in the future. No specific format is required, but the ADRT must be in writing, must be witnessed and, if life-sustaining treatment such as cardiopulmonary resuscitation is being refused, must include the wording ‘even if life is at risk’ (Department for Constitutional Affairs 2007). An ADRT cannot be used to refuse basic care such as warmth, shelter, the offer of food and fluid, hygiene and comfort measures. Bisson et al (2009) suggest that an ADRT should be short and easy to follow, unambiguous, with space for personal statements. It should also include information on wishes in relation to refusal of life-sustaining treatments, future care location, capacity assessment, witness details and also a distribution list. Questions that are often used to help individuals to draw up an ADRT include: Do you wish to be resuscitated in the event of cardiac or respiratory arrest? Would you wish to receive invasive ventilation? Would you wish to have medication to keep you comfortable? Would you wish to receive antibiotic therapy? Would you wish to have alternative methods of feeding, such as a percutaneous endoscopic gastrostomy tube? Where would you wish to be cared for – including would you be willing to go into hospital?
5 Access Making Decisions: A Guide for People who Work in Health and Social Care (Mental Capacity Implementation Programme 2006) and review Section 6, Assessing Capacity, pages 17-20. Reflect on whether this may affect your practice. Develop a resource that could be used in your area of work to outline the essential principles of assessing mental capacity.
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CPD person-centred care Who would you want to be informed of your decisions? The ADRT should be signed and witnessed, and a list should be made of those to whom it is to be circulated. The format of this document provides a forum for further discussion in relation to interventions and the identification and support of an individual’s wishes. To complete an ADRT, the individual must be aged over 18 years and have capacity to make the decisions at the time; the consequences of the decisions must be understood by the individual and the decisions should not have been made under duress. It is considered good practice to review an individual’s ADRT and to document that the review has been undertaken, although there are no specific recommendations for how often a review should be undertaken. The potential consequences of knowingly ignoring a valid ADRT are the criminal charge of assault, a possible civil claim and the breach of the individual’s human rights (Article 8 of the European Convention on Human Rights: Right to a Private Life). The exception to this is if an individual is detained under the Mental Health Act 1983, when he or she can be treated without consent for a mental health disorder even if such treatment has been refused in an ADRT. However, the Mental Capacity Act 2005 also states that, if a care provider has moral or religious objections to an ADRT, he or she is not forced to act on it. In this case, the caregiver should ensure his or her objections are highlighted as soon as possible to allow the transfer of care to an alternative health care professional. An ADRT cannot be used to request treatments or care. Such preferences should be
USEFUL RESOURCES Advance Decisions to Refuse Treatment – training programme: www.adrt.nhs.uk Dying Matters: http://dyingmatters.org Huntington’s Disease Association: http://hda.org.uk Motor Neurone Disease Association: www.mndassociation.org Multiple Sclerosis Society: www.mssociety.org.uk Multiple Sclerosis Trust: www.mstrust.org.uk Multiple System Atrophy Trust: www.msatrust.org.uk National End of Life Care Programme (the programme is now closed; however, information is available on the archived website): www.nhsiq.nhs.uk/legacy-websites/end-of-life-care.aspx National Institute of Neurological Disorders and Stroke (United States): www.ninds.nih.gov Neurological Alliance: www.neural.org.uk Parkinson’s UK: www.parkinsons.org.uk Progressive Supranuclear Palsy Association: www.pspassociation.org.uk
outlined in a statement of wishes or Preferred Priorities for Care document (Lancashire and South Cumbria Cancer Network 2011). An ADRT, when it is valid and applicable to the circumstances, and has not been altered verbally or in writing since it was made, altered or reviewed, will preclude the need for a best interest decision to be made if the individual lacks capacity.
Lasting Power of Attorney
The Mental Capacity Act 2005 introduced a new type of power of attorney, in which an individual aged 18 years or over could nominate someone to act on his or her behalf in the future if he or she lacked capacity. The Lasting Power of Attorney can be used when an individual (the donor) nominates another or others (attorney/s) to act in his or her best interests in decision making in relation to personal welfare including health, and/or property and financial affairs. An individual can nominate attorneys for either one or both of the categories. A Lasting Power of Attorney directive made after an ADRT will invalidate the ADRT if the Lasting Power of Attorney gives the attorney the authority to make decisions about the same treatment. An attorney will have the authority to make decisions relating to life-sustaining treatments only if this has been specified in the Lasting Power of Attorney.
Personal considerations for advance care planning The advance care planning process can be emotional and difficult, and it is important that the people facilitating conversations can gain support from their organisations and have opportunities to reflect on the conversations and processes. Appropriate clinical supervision and support are vital (Seymour et al 2010), as are recognition and respect that there may be times in a person’s life when it is not appropriate for him or her to be involved in these types of discussion.
Conclusion Advance care planning for people with progressive neurological conditions should be a fundamental, but voluntary, component of care. It is appropriate for nurses, with the appropriate training, knowledge and support, to initiate and facilitate the process of advance care planning.
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Early consideration of an advance care plan is essential for people with progressive neurological conditions because of the potential cognitive and communication problems that may develop as conditions progress. There is no ‘right way’, and each individual will have differing requirements and considerations. Some patients may discuss advance care planning more easily than others; some people may never want to discuss or complete an advance care plan. These differences should be respected. The development of an advance care plan can, however, ensure that the care provided
for the individual respects his or her wishes, and reduces the burden on the family of making complex and difficult decisions. An advance care plan can also contribute to effective communication within a multidisciplinary team, with all involved being aware of and committed to fulfilling the individual’s choices. The Mental Capacity Act 2005 has provided a legal framework to be considered when developing advance care plans, and any care decisions made should include due consideration of this legislation NS Complete time out activity 6
6 Now that you have completed the article, you might like to write a reflective account. Guidelines to help you are on page 62.
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