1.1. Describe the difference between a care or support plan and an Advance Care Plan
Advance care planning (ACP) is a process of discussion between an individual and their care providers irrespective of discipline. According to NHS guidlines the difference between ACP and planning more generally-which sets out how the client’s care and support needs will be met- is that the process of ACP is to make clear a person’s wishes.
1.2. Explain the purpose of advance care planning
It usually take place in the context of an anticipated deterioration in the individual’s condition in the future, with attendant loss of capacity to make decisions and/or ability to communicate wishes to others. In that case Advance care planning can ensure that all of those concerned with the patient’s care and well-being kept informed -with the patient’s permission-of any decisions, wishes or preferences which impact upon her care when she has no ability to communicate these any more.
1.3. Identify the national, local and organisational agreed ways of working for advance care planning
The main principles are covering the agreed ways of working:
The process is voluntary. No pressure should be brought to bear by the professional, the family or any organisation on the individual concerned to take part in ACP ACP must be a patient centred dialogue over a period of time The process of ACP is a reflection of society’s desire to respect personal autonomy. The content of any discussion should be determined by the individual concerned. The individual may not wish to confront future issues; this should be respected All health and social care staff should be open to any discussion which may be instigated by an individual and know how to respond to their questions Health and social care staff should instigate ACP only if in the context of a professional judgement that leads them to believe it is likely to benefit the care of the individual.
The discussion should be introduced sensitively Staff will require the appropriate training to enable them to communicate effectively and to understand the legal and ethical issues involved Staff need to be aware when they have reached the limits of their knowledge and competence and know when and from whom to seek advice Discussion should focus on the views of the individual, although they may wish to invite their carer or another close family member or friend to participate. Some families may have discussed their issues and would welcome an approach to share this discussion Confidentiality should be respected in line with current good practice and professional guidance Health and social care staff should be aware of and give a realistic account of the support, services and choices available in the particular circumstances.
This should entail referral to an appropriate colleague or agency when necessary The professional must have adequate knowledge of the benefits, harms and risks associated with treatment to enable the individual to make an informed decision Choice in terms of place of care will influence treatment options, as certain treatments may not be available at home or in a care home, e.g. chemotherapy or intravenous therapy. Individuals may need to be admitted to hospital for symptom management, or may need to be admitted to a hospice or hospital, because support is not available at home ACP requires that the individual has the capacity to understand, discuss options available and agree to what is then planned. Should an individual wish to make a decision to refuse treatment (advance decision) they should be guided by a professional with appropriate knowledge and this should be documented according to the requirements of the MCA 2005
1.4. Explain the legal position of an Advance Care Plan
Mental Capacity Act 2005 which came into force in October 2007 along with the supporting Code of Practice. Chapter 9 of the Mental Capacity Act (MCA) 2005 Code of Practice refers specifically to Advance Decisions to Refuse Treatment and will be used as a guide to sections within this document that refer to advance decisions. According to NHS guidelines for individuals with capacity it is their current wishes about their care which needs to be considered. Under the MCA of 2005, individuals can continue to anticipate future decision making about their care or treatment should they lack capacity. In this context, the outcome of ACP may be the completion of a statement of wishes and preferences or if referring to refusal of specific treatment may lead onto an advance decision to refuse treatment.
This is not mandatory or automatic and will depend on the person’s wishes. Alternatively, an individual may decide to appoint a person to represent them by choosing a person (an ‘attorney’) to take decisions on their behalf if they subsequently lose capacity. A statement of wishes and preferences is not legally binding. However, it does have legal standing and must be taken into account when making a judgement in a person’s best interests. Careful account needs to be taken of the relevance of statements of wishes and preferences when making best interest decisions. If an advance decision to refuse treatment has been made it is a legally binding document if that advance decision can be shown to be valid and applicable to the current circumstances. If it relates to life sustaining treatment it must be a written document which is signed and witnessed.
1.5. Explain what is involved in an ‘Advance Decision to Refuse Treatment’
The MCA 2005 provides the statutory framework to enable adults with capacity to document clear instructions about refusal of specific medical procedures should they lack capacity in the future. An advance decision to refuse treatment:
Can be made by someone over the age of 18 who has mental capacity Is a decision relating to refusal of specific treatment and may be in specific circumstances Can be written or verbal
If an advance decision includes refusal of life sustaining treatment, it must be in writing, signed and witnessed and include the statement ‘even if life is at risk’ Will only come into effect if the individual loses capacity Only comes into effect if the treatment and circumstances are those specifically identified in the advance decision Is legally binding if valid and applicable to the circumstances.
1.6. Explain what is meant by a ‘Do Not Attempt cardiopulmonary resuscitation’ (DNACPR) order
In England and Wales, CPR is presumed in the event of a cardiac arrest unless a do not resuscitate order is in place. If they have capacity as defined under the Mental Capacity Act 2005 the patient may decline resuscitation, however any discussion is not in reference to consent to resuscitation and instead should be an explanation. Patients may also specify their wishes and/or devolve their decision-making to a proxy using an advance directive, which are commonly referred to as ‘Living Wills’. Patients and relatives cannot demand treatment (including CPR) which the doctor believes is futile and in this situation, it is their doctor’s duty to act in their ‘best interest’, whether that means continuing or discontinuing treatment, using their clinical judgment.
Learning Outcome 2: Understand the process of advance care planning Assessment Criteria
2.1. Explain when advance care planning may be introduced
ACP may be instigated by either the individual or a care provider at any time not necessarily in the context of illness progression but may be at one of the following key points in the individual’s life: Life changing event, e.g. the death of spouse or close friend or relative Following a new diagnosis of life limiting condition eg. cancer or motor neurone disease Significant shift in treatment focus e.g. chronic renal failure where options for treatment require review Assessment of the individual’s needs
Multiple hospital admissions
2.2. Outline who might be involved in the advance care planning process
Advance care planning centres on discussions with a person who has capacity to make decisions about their care and treatment. If the individual wishes, their family, friends and health and social care professionals may be included. It is recommended that with the individual’s agreement that discussions are documented, regularly reviewed, and communicated to key persons involved in their care.
2.3. Describe the type of information an individual may need to enable them to make informed decisions
Statements of wishes and preferences can include personal preferences, such as where one would wish to live, having a shower rather than a bath, or wanting to sleep with the light on. Sometimes people may wish to express their values e.g. that the welfare of their spouse or children is taken into account when decisions are made about their place of care. Sometimes people may have views about treatments they do not wish to receive but do not want to formalise these views as a specific advance decision to refuse treatment. These views should be considered when acting in a person’s best interests but will not be legally binding. A statement of wishes and preferences cannot be made in relation to any act which is illegal e.g. assisted suicide.
2.4. Explain how to use legislation to support decision-making about the capacity of an individual to take part in advance care planning
The Mental Capacity Act says:
Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment. Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand. Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care. The MCA also allows people to express their preferences for care and treatment in case they lack capacity to make these decisions. It also allows them to appoint a trusted person to make a decision on their behalf should they lack capacity in the future.
The MCA sets out a two-stage test of capacity.
Does the individual concerned have an impairment of, or a disturbance in the functioning of, their mind or brain, whether as a result of a condition, illness, or external factors such as alcohol or drug use? Does the impairment or disturbance mean the individual is unable to make a specific decision when they need to? Individuals can lack capacity to make some decisions but have capacity to make others, so it is vital to consider whether the individual lacks capacity to make the specific decision.
Also, capacity can fluctuate with time – an individual may lack capacity at one point in time, but may be able to make the same decision at a later point in time. Where appropriate, individuals should be allowed the time to make a decision themselves.
MCA says a person is unable to make a decision if they cannot:
understand the information relevant to the decision
retain that information
use or weigh up that information as part of the process of making the decision
If they aren’t able to do any of the above three things or communicate their decision (by talking, using sign language, or through any other means), the MCA says they will be treated as unable to make the specific decision in question. Before deciding an individual lacks capacity to make a particular decision, appropriate steps must be taken to enable them to make the decision themselves.
Does the individual have all the relevant information they need? Have they been given information on any alternatives?
Could information be explained or presented in a way that is easier to understand (for example, by using simple language or visual aids)? Have different methods of communication been explored, such as non-verbal communication? Could anyone else help with communication, such as a family member, carer, or advocate? Are there particular times of day when the individual’s understanding is better? Are there particular locations where the individual may feel more at ease? Could the decision be delayed until a time when the individual might be better able to make the decision?
2.5. Explain how the individual’s capacity to discuss advance care planning may influence their role in the process
Example by NHS:
Caroline has dementia and lives at home with the support of carers from a domiciliary care agency. Over the last two days, she has become very confused and unable to make decisions about the care she receives. The care worker has suggested that the GP be called. Caroline is adamant that she does not require the GP. It is clear that Caroline is unwell and the care worker, having consulted the family, assesses that Caroline lacks the capacity to make the decision about whether or not to call the doctor. So the care worker calls the GP and records her actions in the care plan. The GP visits Caroline and diagnoses a urinary tract infection. He requests a urine sample for analysis and commences treatment with antibiotics. Within three days, Caroline has regained her capacity, for this decision.
2.6. Explain the meaning of informed consent
Informed consent is a process for getting permission before conducting a healthcare intervention on a person. For consent to be valid, it must be voluntary and informed, and the person consenting must have the capacity to make the decision. These terms are explained below: Voluntary – the decision to either consent or not to consent to treatment must be made by the person themselves, and must not be influenced by pressure from medical staff, friends or family.
Informed – the person must be given all of the information in terms of what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments and what will happen if treatment does not go ahead. Capacity – the person must be capable of giving consent, which means they understand the information given to them, and they can use it to make an informed decision.
If an adult has the capacity to make a voluntary and informed decision to consent to or refuse a particular treatment, their decision must be respected. This still stands even if refusing treatment would result in their death, or the death of their unborn child. If a person does not have the capacity to make a decision about their treatment, the healthcare professionals treating them can go ahead and give treatment if they believe it is in the person’s best interests. However, the clinicians must take reasonable steps to seek advice from the patient’s friends or relatives before making these decisions.
2.7. Explain own role in the advance care planning process
Under the MCA, anybody making a decision about the care or treatment of an individual, who has been assessed as lacking the capacity to make that decision for himself, will be required to take any statement of wishes and preferences into account when assessing that person’s best interests. Part of assessing best interests should include making reasonable efforts to find out what a person’s wishes, preferences, values and beliefs might be. This is likely to involve contacting the person’s family or other care providers. They may be able to advise whether any statements of wishes or preferences exists or for help in determining that person’s wishes. This will not always be possible, e.g. if an individual is admitted as an emergency, is unconscious and requires rapid treatment.
2.8. Identify how an Advance Care Plan can change over time
Person’s views may change over time. If they wish to make any changes they should let their doctor or nurse know as well as their family and friends. When their Advance Care Plan is completed they are encouraged to keep it with them and share it with everyone involved in their care. What has been written in their Advance Care Plan will always be taken into account when planning their care. However sometimes things can change unexpectedly, such as their carers (family, friends and neighbours) becoming over tired or ill- these are unforeseen circumstances.
2.9. Outline the principles of record keeping in advance care planning
According to NHS guidelines:
Healthcare professionals cannot make a record of the discussion without the permission of the individual The individual concerned must check and agree the content of the record Information cannot be shared with anyone, unless the individual concerned has agreed to disclosure. Where the individual refuses to share information with certain individuals the options should be explained to them and the consequences made clear Any record should be subject to review and if necessary, revision and it should be clear when this is planned. Review may be instigated by the individual or care provider, can be part of regular review or may be triggered by a change in circumstances A clear record of who has copies of the document will help facilitate future updating and review Copies in notes should be updated when an individual makes any changes
Where an advance decision is recorded, it should follow guidance available in the Code of Practice for the MCA http://www.dca.gov.uk/menincap/legis.htm#codeofpractice and be recorded on a separate document to that used for ACP The professional making the record of an advance decision must be competent to complete the process Where this is part of a professional’s role, competence based training needs to be available and accessed If the individual agrees for their record to be shared, it should be ensured that systems are in place to enable sharing between health and social care professionals involved in the care of the individual, including out of hours providers and ambulance services For an individual who has lost capacity disclosure of a statement will be based on best interests There should be locally agreed policies about where the document is kept. For example, it may be decided that a copy should be given to the individual and a copy placed in the notes 2.10 Describe circumstances when you can share details of the
Advance Care Plan
The advance care plan is a document that goes into effect only if the client is incapacitated and unable to speak for herself. This could be the result of disease or severe injury—no matter how old is she. It helps others know what type of medical care she wants. In that case it is really important to make sure that everybody who is involved in her care knows everything about her preferences and wishes-thus the Advance Care Plan’s details should be shared. That could explain her feelings, beliefs and values that govern how she make decisions. They may cover medical and non-medical matters. They are not legally binding but should be used when determining a person’s best interests in the event they lose capacity to make those decisions.
Learning Outcome 3: Understand the person centred approach to advance care planning Assessment Criteria
3.1. Describe the factors that an individual might consider when planning their Advance Care Plan
The wishes are being expressed during advance care planning are personal and can be about anything to do with the patient future care. They may want to include their priorities and preferences for the future, for example: how they might want any religious or spiritual beliefs to hold to be reflected in their care, the name of a person or people they wish to represent their views at a later time, their choice about where they would prefer, if possible, to be cared for, for example at home, in a hospital, nursing home or hospice their thoughts on different treatments or types of care they might be offered, how they like to do things, for example, preferring a shower instead of a bath or sleeping with the light on, concerns or solutions about practical issues, for example, who will look after their dog should you become ill
3.2. Explain the importance of respecting the values and beliefs that impact on the choices of the individual
Sometimes people will want to write down or tell others their wishes and preferences for future treatment and care, or explain their feelings or values that govern how they make decisions. Statements of wishes and preferences or documented conversations the person has had with their family or other carers may be recorded in the person’s notes. A statement of wishes and preferences can be of various types, for example: A requesting statement reflecting an individual’s aspirations and preferences. This can help health and social care professionals identify how the person would like to be treated without binding them to that course of action if it conflicts with professional judgment A statement of the general beliefs and aspects of life which an individual values. This might provide a biographical portrait of the individual that subsequently aids deciding his/her best interests.
Your beliefs and values are what make you a unique individual. They are based upon past experiences as well as present circumstances. Many of them were learned from parents as well as other respected individuals. While some people may have values and beliefs that are deemed to be “wrong” according to society, unless your values and beliefs cause harm to others, they cannot be considered wrong. While some beliefs and values may change from time to time, they remain your own.
3.3. Identify how the needs of others may need to be taken into account when planning advance care
A person assessing an individual’s best interests must:-
Not make any judgement using the professional’s view of the individual’s quality of life Consider all relevant circumstances and options without discrimination Not be motivated by a desire to bring about an individual’s death Consult with family partner or representative as to whether the individual previously had expressed any opinions or wishes about their future care e.g. ACP Consult with the clinical team caring for the individual
Consider any beliefs or values likely to influence the individual if they had capacity Consider any other factors the individual would consider if they were able to do so Consider the individual’s feelings
3.4. Outline what actions may be appropriate when an individual is unable to or does not wish to participate in advance care planning
Many patients with early or slowly progressing disease, and some with advanced disease, will not wish to discuss end-of-life care. However, they should still receive the opportunity to discuss other aspects of their future care. If the patient does not have capacity for making future plans, then the clinical team will need to make choices based on the patient’s best interests as defined in the MCA.
3.5. Explain how individual’s care or support plan may be affected by an Advance Care Plan
If an individual wishes, ACP may be an integral part of the care and communication process and of their regular care plan review. The difference between ACP and care planning more generally is that the process of ACP will usually take place in the context of an anticipated deterioration in the individual’s condition in the future, with attendant loss of capacity to make decisions and/or ability to communicate wishes to others.