Mental Capacity Act Skills Study Session John Taylor Hospice Mental Capacity Act Skills Study Session Session 1 of 2: The principles, gaining informed consent, assessing capacity and making decisions in patient’s best interests. Mental Capacity Act Project Team

every adult has the right to make their own decisions

Empowerment It’s all about the POWER in empowerment and who holds that power. Empowerment is supporting and enabling the people we work with to have as much control over the decision in their life as possible.

Care & Treatment decisions We will be supporting our patients with important decisions about their care, treatment and / or accommodation. What do out patients’ need in order to be able to make informed decisions about their care, treatment and / or accommodation?

…it’s all about Our patients need information about their options and the potential risks and benefits of each option and how it might affect them. Information is about effective communication and our ability to communicate important information to another human being How do we make our communication with our patients the most effective? How do we make sure the information we are giving our patients maximises the potential for them to make an informed decisions and be in control?

? How do we know if our patients have understood?

Consent – how patients exercise their control To ensure our patients are giving informed consent, we need to ensure they understand the information about their care, treatment and / or accommodation. We need to ask them to relay information about their options and decision to us in their own words.

Implied vs. informed consent Difference between implied and informed consent: Having the capacity Understanding the information Compliance and capacity are not the same thing, just because a patient agrees or allows you to carry our a treatment, it doesn’t mean that they understand, have capacity and have given informed consent

? What if a patient is unable to give informed consent, because of an impairment in the functioning of their mind or brain?

If the patient lacks capacity to consent: The decision is made on their behalf in their best interests Unless there is a valid and applicable advance decision to refuse treatment Decision must be the least restrictive option of the person’s rights and freedoms What happens to that POWER?

The 5 principles

The principles: 1. The assumption of capacity We always start by assuming everyone we work with has capacity to make their own decisions, until there is evidence to suggest otherwise This principle protects the right of adults to make their own decisions If we claim someone we are working with lacks capacity we must provide proof – this proof is the two stage assessment of capacity, it is up to us to prove the person lacks capacity it is not up to them to prove they have capacity Therefore we are required to gain our patient’s consent to provide care, treatment or support, we must respect the rights of our patient’s to refuse treatment if they have capacity to decide.

The principles: 2. Maximising capacity Before it can be claimed that someone lacks capacity everything practical must be done to enable them to make a decision for themselves Using different forms of communication / providing information in an accessible format Having a structured programme to improve the person’s capacity (i.e. through education) Treating any medical condition that may be impairing the person’s capacity In emergency and urgent situations we may not have time to provide additional support and information and may have to make an assessment of the patient’s capacity there and then

The principles: 3. People can make unwise decisions A person shouldn’t be treated as unable to make a decision, because the decision they make appears unwise to others We all have different values, wishes and beliefs We shouldn’t confuse an assessment of the person’s capacity with an assessment of what we believe is in their best interests, the assessment isn’t on the basis of whether the person choose what you think is the right choice Different people give different weight to different things

The principles: 4. Act in the best interests of people who lack capacity Follow the best interest checklist Best interests is a person centred process which should focus on the values, wishes and beliefs of the person and what they would consider if they were making a decision for themselves The exception to the best interests principle is if the person has made a valid advance decision to refuse treatment, or is being involved in research, as other safeguards apply in these circumstances If someone holds a valid and applicable Lasting Power of Attorney (LPA) they may be acting as the decision maker, however they must still act in the best interests of the person

The principles: 5. Act in the least restrictive way of people who lack capacity Before the decision is made consideration should be given to whether there is a less restrictive course of action Best interests decision making is restrictive as the person is no longer in control over the decision Can we avoid making a decision on the person’s behalf? Can we delay the decision so that the person can make it for themselves if they can regain capacity? Can we act in accordance with their views? How can we facilitate the person having the most amount of personal freedom?

Case study:

The two stage assessment of capacity

The two stage assessment of capacity The Act defines a lack of capacity as: At the time a decision needs to be made, a person is unable to make a decision for themselves because of an impairment or a disturbance in the functioning of their mind or brain Under the Act capacity is always time and decision specific some people may be unable to make one decision, but retain capacity for other decisions Capacity can fluctuate and change over time Start with a blank canvass and the assumption that the person has capacity to make the decision Think about the information and any support the person will need to maximise the opportunity for them to make a decision for themselves

The two stage assessment of capacity The diagnostic test Is there an impairment or a disturbance in the functioning in the mind or the brain, that is affecting the person’s ability to make a decision For example: mental illness, cognitive impairment such as dementia or Alzheimer’s disease, learning disability, any physical or medical conditions that cause confusion, drowsiness or loss of consciousness, delirium, acquired brain injury etc. The functional test A person is unable to make a decision if they cannot do of any one or more of the following: Understand the information Retain the information Use and weigh up the information as part of the decision making process Communicate their decision

The two stage assessment of capacity Remember stages 1 & 2 are part of the same assessment, you must be able to show that the person lacks capacity in the functional test, because of the impairment identified in the diagnostic test The outcome of the assessment is that the person will either: Have capacity to make the decision - in which case we must obtain the patient’s consent and respect their decision Or Lack capacity to make the decision, therefore they are unable to give informed consent and decisions are made in their best interests Consider if the person’s capacity is fluctuating and whether they could regain capacity in the future - if possible delay the decision until the person can make the decision themselves

The decision making tree

Information and support to enable patient to give informed consent Decision that needs to be made, i.e. consenting to medical examination, observation, investigation or treatment etc. Check that we have given sufficient information and support to the patient to enable them to make their own decision Information and support to enable patient to give informed consent Carry out time and decision specific, two stage assessment of capacity Check patient has understood the information given to them There is concern about the patient understanding the decision Patient understands the decision Patient has capacity and therefore the right to make their own choices Need to obtain their consent to provide care and / or treatment Patient lacks capacity to make the specific decision at the time it needs to be made and therefore is unable to give informed consent Decision made in patient’s best interests (follow best interest checklist) Check for any advance decision to refuse treatment or relevant Lasting Power of Attorney Valid Health and Welfare LPA will act on patient’s behalf / follow advance decision if valid and applicable

Break

Clinical decisions

Clinical decisions “If patients have capacity to make decisions for themselves, a basic model applies: The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge. The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.” From GMC Consent: patients and doctors making decisions together: http://www.gmc-uk.org/static/documents/content/Consent_-_patients_and_doctors_making_decisions_together-english.pdf

Clinical decisions The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all. If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.” From GMC Consent: patients and doctors making decisions together: http://www.gmc-uk.org/static/documents/content/Consent_-_patients_and_doctors_making_decisions_together-english.pdf

Clinical decisions Essentially as the clinician you decide what’s on the menu, based on your clinical knowledge and experience: The patient then chooses from the options that are available, or chooses to not to have any of the options. It’s not like a catalogue where patients can pick a chose from a large number of treatments.

Clinical decisions Common Law consent guidelines – patient requesting treatment: Mr Leslie Burke v GMC [2005] EWCA Civ 1003 Mr. Burke was at the time a 45 year old gentleman with a degenerative brain condition cerebellar ataxia, who will one day lose his ability to speak and control his limbs - Mr. Burke argued that specific GMC guidance in relation to ANH at the end of life, which doctors decide upon treatment breached his human rights, which he initially won Mr. Burke was concerned about not being provided ANH, although at no point were the GMC arguing against providing that treatment to him, their point was who the final decision maker was in terms of the treatment options available to the patient (which is the clinical decision) Appealed by the GMC as they felt this fundamentally changed the nature of the doctor / patient relationship and that doctors would then be in a position of having to provide treatment that was futile or even harmful Court of appeal agreed that doctors are under no legal or ethical obligation to agree to a patient’s request for treatment if they consider the treatment is not in the patient’s best interests GMC Website: Consent guidance: Legal Annex - Common Law: http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_common_law.asp

Planning ahead

Advance decisions to refuse treatment Enables someone aged 18 and over who has capacity at the time, to refuse a specific medical treatment for a time in the future when they may lack capacity If it is valid and applicable it has the same effect as a decision made by a person who has capacity There are special rules for Advance Decisions to refuse life sustaining treatment An advance decisions cannot be used to demand specific treatment, Cannot refuse basic shelter, food and warmth Information about Advance Decisions to Refuse Treatment: http://www.adrt.nhs.uk/

Lasting Power of Attorney (LPA) Enables someone aged 18 and over who has capacity at the time, to give someone they trust the legal authority to make decisions on their behalf, if they lack capacity for some reason in the future Must be registered with Office of the Public Guardian (OPG) Two types: Property and Affairs Personal Welfare You can contact the OPG to find out if there are any registered Powers of Attorney: https://www.gov.uk/find-someones-attorney-or-deputy You can contact the OPG if you have concerns about an attorney or deputy (as well as submitting a multi-agency safeguarding alert): https://www.gov.uk/report-concern-about-attorney-deputy Government Web Portal for an overview of Lasting Powers of Attorney: https://www.gov.uk/power-of-attorney/overview

Lasting Power of Attorney (LPA) Property and Affairs – Can manage any aspect of the person’s finances and property Can be used when the person still has capacity or when they lose capacity (this is up to the person registering the LPA) The person making the LPA can add restrictions if there are certain decisions they don’t want their attorney to be able to make

Lasting Power of Attorney (LPA) Personal Welfare – Can make decisions about the person’s accommodation, care and treatment Can only be used when the person lacks capacity for the specific decision The person making the LPA can add restrictions if there are certain decisions they don’t want their attorney to be able to make Unless the person writing the LPA explicitly gives their attorney that authority the attorney cannot consent to or refuse life sustaining treatment or overrule a valid and applicable advance decision made by the person

Advance care planning: Other advance expressions of wish… Living wills Advance directives About Me or other person centred planning tools Can specify the care, treatment, support and accommodation the person would like – not legally binding but can be very useful to ensure that the person receives person centred care, treatment and support. They can also help us to know what decision the person may have made if they had capacity, what things are important to them and what things they would consider in relation to the decisions in their lives.

Making decisions in a person’s best interests

Best Interests Checklist: Encourage participation Identify all the relevant circumstances Find out the person’s views Avoid discrimination Assess whether the person might regain capacity - consider whether the person is likely to regain capacity (e.g. after receiving medical treatment or further support). If so, can the decision wait until then, so the person can be in control? Decisions concerns life sustaining treatment Consult others – people who are important to the person, may need to involve an IMCA if person meets criteria Avoid restricting the person’s rights Take all this into account

Best Interests Checklist: All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person’s death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person’s death for whatever reason, even if this is from a sense of compassion. ….the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment. Importantly this cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person’s death is foreseen. Doctors must apply the best interests’ checklist and use their professional skills to decide whether life-sustaining treatment is in the person’s best interests. If the doctor’s assessment is disputed, and there is no other way of resolving the dispute, ultimately the Court of Protection may be asked to decide what is in the person’s best interests. Article 2 of the Human Rights Act protects the right to life – we have a positive obligation to uphold and protect this right

When an Independent Mental Capacity Advocate (IMCA) should be involved IMCAs work with and act as an independent safeguard for people who have been assessed to lack capacity and have no appropriate family or friends that can support, represent them and be consulted. There are instances when an IMCA must be involved if the person meets this criteria: Serious medical treatment Long term changes of accommodation The Deprivation of Liberty Safeguards (DoLS) There are further instances when an IMCA can be involved if the person meets this criteria and it would be of benefit to them: Safeguarding or Adult Protection (this is the only instance when an IMCA can be instructed regardless of the appropriateness of family and friends) Care reviews

Balance sheet approach to best interests Option: Positives / benefits Negatives / risks A ‘Balance Sheet’ approach is a way of weighing up the different factors that are relevant in a particular decision. The approach is to complete a balance sheet of the positives and negatives for each of the options that are available to a person. A Balance Sheet is a way of making decisions that are open and transparent, by demonstrating how a decision was made and the factors that were considered. Look for any ‘magnetic factor’ that is capable of determining the outcome of a balancing process. A magnetic factor does not only mean that that element is given distinguished weight in the balance sheet but also ‘pulls’ the evaluation of all elements in a specific direction and thus determines the outcome of the decision.

Balance sheet approach to best interests In one case, the Court was asked to decide about the withdrawal of the artificial nutrition of a minimally conscious patient, the sanctity of life seems to have acquired such ‘magnetic importance’. The importance of preserving life was deemed to be the decisive factor which could not be outweighed by other considerations on the opposite side of the ‘balance sheet’ (e.g. past preferences of the patient, the wishes and feelings of relatives, etc.). This decision was based on a more objective assessment of what is in a person’s best interests. This has however recently towards a more substituted judgement test! In a more recent case, where again the Court was asked to decide about the withdrawal of the artificial nutrition of a minimally conscious patient, the facts of the case were different to that above. The Court held that the person’s views that they would abhor to be kept alive in such a state (even though there was no valid and applicable advance decision to refuse treatment), carried greater weight and it was decided that it was in that person’s best interests to withdraw the ANH. Where there is clear evidence of the person’s views, they must be given great respect.

Case study:

Questions?

Mental Capacity Act Code of Practice: Visit our Web Resource page for useful Mental Capacity Act resources, information and best practice tools: http://bhamsouthcentralccg.nhs.uk/2012-02-08-14-59-22/mental-capacity-act Mental Capacity Act Code of Practice: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice