Advanced Directives/ Statements & The Tidal Model
Graham Peace and Tracey Ellis © 2006
South West Yorkshire NHS Mental Health Trust, England
Professor Phil Barker and Poppy Buchanan Barker have noted that traditionally, the persons story is written by various professionals - in case histories, notes, records, letters etc. Usually this leads to various suggestions as to how people should live their lives. These biographies are usually unauthorised, and often disputed by the person whose life is under the microscope. The Tidal Model aims to help the person reclaim their life story, which has been colonised by professional workers, and sometimes by family and friends. This simple act of reclamation is the first step on the voyage of recovery. Having reclaimed the story of breakdown and distress, the person can begin to map a new course one small step at a time.
People with major problems of living need the right conditions (safe haven) under which to work on their problems. At times of great distress, people need support, which comes in a variety of 'therapeutic' disguises. Traditional ideas about the value of various therapies - whether in the form of drugs, hospitalisation or one of the countless 'talking cures,- suggest that someone else might know what the distressed person needs. The Tidal Model assumes that the person has the knowledge of what needs to be done, within them. Consequently, people do not need expert therapists, they need supporters. All of us - whether professional agents, friends, family members etc should remember that the best that we can become is genuine supporters. As such, the task of the helper is to provide the conditions under which people may heal themselves.
The Tidal Model recognises that all helpers -however respected, qualified or seemingly expert - know little of what is actually happening within the person's experience of mental distress. As a result, we know little of what might need to be done, to address, and resolve the persons problems. That vital knowledge lies, perhaps dormant, within the person. Therefore for the person who has suffered major problems of living, developing an Advanced Directive/Statement gives them the opportunity when well, to use their wisdom/knowledge to guide their care in a crisis, also allowing health and social care professionals to value the voice, develop genuine curiosity and become the apprentice as stated in the Tidal Model 10 commitments. It also helps to reduce the distress caused by an admission to hospital and helps the person to establish an empowering therapeutic relationship with health and social care professionals from day one of their admission.
Within our Tidal Model Project here in Calderdale, West Yorkshire, Advanced Directives/Statements were originally discussed at M Power a service user led involvement project, some five years ago. M Power and its members campaigned tirelessly to raise awareness of the Advanced Directives/Statements and to have them implemented in Calderdale. An opportunity came with the Tidal Model Project and we were able to incorporate Advanced Directives/Statements in to the Tidal Model Awareness Training day; not only was the Tidal Model an opportunity to focus on new ideas about nursing but it also completely embraced all the concepts of Advanced Directives.
A member of M Power delivered the training to Mental Health workers, Community Mental Health, Crisis Resolution Home Treatment and Assertive Outreach Teams, in addition, to Doctors, Psychiatrists, Service User Groups, Day Units, Occupational Therapy Staff and Student Nurses attending the University of Huddersfield as part of the Tidal Model Awareness Day. The Advanced Directives/Statements training is delivered from the perspective of someone using Mental Health Services and has proved very powerful in promoting their use within the locality. Many people who use services have now started to develop an Advanced Directive/Statement which we have found works hand in hand with the Tidal Model. People are starting to be seen as the experts of their illness and condition, and are able to plan for a crisis in advance.
Advanced Directives/Statements are an opportunity for the person to assist health care professionals in a positive way in the planning and delivery of their care. They need not be complex documents but are an opportunity for the person to focus on what has worked in the past, what hasnt worked and ultimately how things can be made better (The Toolkit), in addition to any domestic arrangements that need to be addressed in their lives.
Developing an Advanced Directive/Statement helps the person to cope with any worries, concerns and anxieties about becoming unwell and is a very useful tool in helping the person focus and reflect on their situation. Advanced Directives/Statements are very empowering helping to create a truly person centred experience.
It takes time and effort to complete an Advanced Directive/Statement and remember as stated in the 10 commitments that Change is Constant. So ultimately as in life the Advanced Directive/Statement will need to be constantly updated due to life events, personal circumstances etc. We wish you every success in getting to work on your own Advanced Directives/Statements so that you too can reap its benefits, become more empowered and be recognised as the expert on your truly unique journey towards recovery.
We detail below specific information on Advanced Directives/Statement with an example of a template you may wish to use.
Senior Nurse Manager
Service User Representative.
The Government's White Paper to the Mental Health Bill, 2003 promotes the concept of advance statements.
Clinical teams will be expected to help the person develop advance agreements.
As already stated an advance directive/statement gives the opportunity for a person to indicate, when well, the way he/she would like services to respond if they become unable to make decisions for themselves.
What are advance statements?
Advance statements are a means, which allow the person to have a greater influence on their care and treatment. They allow for a person with mental health conditions to prepare for a crisis in advance. They embody the spirit of the Human Rights Act. I.e. In Article 3 -protection from inhuman and degrading treatment, Article 8 - respects for privacy and private life, and Article 10 - freedom of expression.
Advanced statements, with the exception of Directives (see below), are not binding in law i.e. those health workers responsible for the person do not have to follow an advance statement. However, they must demonstrate that the persons wishes have been taken into account and failure to do this is unlawful.
Types of Advance Statement
I) a directive. Advance directives relate only to consent to medical treatment, However, the Tidal Model sees the person as an expert within their own mental health, this can be demonstrated within an Advanced Directive i.e. the person can explain and justify why they do not want to receive a specific treatment or type of care. However, they cannot direct that they are given a specific treatment. An Advance Directive is binding in law, although this can be overridden if the person is subject to detention under the Mental Health Act.
ii) The appointment of representative. The person appoints another person to be consulted about a healthcare decision when he/she is incapable of deciding for themselves. The named person must reflect the persons wishes.
iii) A statement of general beliefs: on various aspects of life which the person values. This statement contains no specific request or refusal but attempts to paint a picture of the person and how their care can be more person centred.
v) A combination of any of the above i.e. refusal, request, appointment of a representative, or who should be given a key to their home, have their pets etc.
The legal doctrine of necessity
When a person does not have the capacity to make decisions for themselves and does not have an Advance Statement, those responsible for making decisions on behalf of that person must apply a principle called the legal doctrine of necessity.
The person who has the power to make the decision and whom has been appointed by the person (the decision maker) must consider what decision the person would make for himself or herself, if they had capacity to do so. The Tidal Model is all about empowering the person before during and after a crisis. The existence of an Advance Statement embodies this process.
In some circumstances the doctor could become the decision maker; they are not bound to follow the Advance Statement, however they must show that they have taken the Advanced Statement into account. Failure to do so would be unlawful. In deciding not to follow the Statement the decision maker must justify the reason for this decision. Again, failure to do so is unlawful.
The elements of the legal doctrine of necessity are:
I) It must be necessary to make that particular decision and consideration must be given to the identification of safe, less draconian, intrusive or restrictive alternatives.
ii) The decision must be a reasonable one.
iii) It must be in the best interests of the person.
Advance Statements are sometimes concerned with the refusal of life sustaining procedures in the event of a terminal illness. They have nothing to do with euthanasia or suicide, and cannot authorize a doctor to do anything which is illegal or which a person with capacity could not request a doctor to do.
Adults with capacity have the right to accept or reject medical treatment. Such a decision does not either have to be reasonable or to be justified to anyone apart from the individual who is making the decision.
Advance Statements empower the person who can then potentially exercise this right, by defining in advance the medical procedures to which they would or would not consent, should they have become incapable of making or communicating that decision.
People detained in hospital under the Mental Health Act 1983
Advanced statements are based on the common law, not legislation.
Accordingly, the terms of the Mental Health Act 1983 take precedence and prevail over Advance Statements when it comes to treatment for mental disorder (as opposed to treatment for physical disorder) if the Act is applied.
Where the person is subject to compulsory detention and treatment under the Mental Health Act an Advance Statement is still legally binding. Although through the use of the Mental Health Act, the Responsible Medical Officer is not bound to comply with this. However, he/she must demonstrate that they have taken the Advanced Statement into consideration when deciding upon an appropriate treatment plan for the person.
Informal (voluntary) admissions
If the person is admitted to hospital on an informal basis either with or without capacity they can only be treated under common law, therefore where there is an Advance Statement health care workers must comply with it.
Storage of an Advance Directive/Statement
The person, and if appropriate the persons carer has a copy of the Advance Statements. In addition, they are filed in the persons notes. An alert sticker is attached to the notes, which readily informs health workers of the existence of the Advance Statement. If an electronic system is in existence, the Advanced Directive/Statement can be placed on the system with an ALERT for staff to its existence.
References for Further Information
1 Making Decisions The Governments Proposals for Making Decisions on Behalf of Mentally Incapacitated Adults
2 Advance Statements about Medical Treatment: BMA 1995
3. The Mental Health Act 1983
4 The Human Rights Act 1999
Shown below is an example of documentation that can be used by the person to produce their Advanced Statement/Directive. This can be done by the person alone our in conjunction with a relative, carer, friend or health or social care professional. It is important to remember that the Advanced Directive/Statement is the persons document.
ADVANCE STATEMENT FOR MENTAL HEALTH CARE
This is my Advance Statement in case I have a mental health crisis and am unable to participate in decisions about my care
My Date of Birth:
Name of professional with whom this was discussed: ________________________and his/her signature_______________________and date_______________
Contact Tel No:
Name of a family member, friend or advocate who knows and understands about this Advance Statement. He/she has given permission to be contacted and will speak for me in a crisis/dispute
Contact Name: _______
Contact Tel No: _
Contact Name: _______
Contact Tel No: _
I confirm that I am over 18 years of age and understand that this document remains effective until I make it clear my wishes have changed. (The wishes of people under 18 years will be taken into
Consideration but are not legally binding)
You should have your Advance Statement signed by at least one, and preferably two witnesses:
Copies of this Advance Statement are held by:
If applicable please complete the following:
This agreement has been discussed with the following:
1 e.g. Doctor/GP/Consultant
ADVANCE STATEMENT FOR CARE & TREATMENT
I declare that my wishes are as follows: (please feel free to continue overleaf if necessary)
1 My wishes regarding medication and treatment are as follows:
(It is helpful to give reasons why)
2 When I was receiving care before, the following worked well for me:
3 Things that have not worked well in the past are:
ADVANCE STATEMENT REGARDING MY PERSONAL AND HOME LIFE
WHEN I AM UNWELL
I declare that my wishes are as follows:
1 I would like the following people to be told immediately that I have been admitted to hospital
2 Other people to contact and tell that I am not at home, e.g.
3 I would like the following people NOT to be told
4 I would like to be consulted before people are told how I am etc
9 Any other information I would like to make known
Guidance Notes on the Workers Role
If you are approached to help someone make an Advance Statement:
· Nothing substitutes working in partnership and making an effective agreed care plan with someone.
· Explain how Advance Statements work and explain what might happen to the form
· Suggest where the person might receive independent advice or advocacy e.g. MIND, Mental Health Action Group or a Solicitor (there may be a cost for this although legal aid is available to those on low incomes)
· If the person requires a lot of help and you are very involved in their care it might be useful to consider whether a colleague from your team might be better placed to give impartial advice.
When someone is in the process of making an Advance Statement
· You can encourage them to discuss the contents with all those involved in their care particularly if the person requires someone to undertake a task.
· You can encourage someone to be very clear about what it is he/she would like and to provide clear reasons as to why they have reached this decision.
· You CANNOT tell the person what to put in and what to leave out. It is their document. Nor must you apply pressure in any way to influence the persons decision.
· You can provide information to help make informed choices.
· If you are unsure about the persons capacity, you can discuss this and the possible implications of this.
If you receive an Advance Statement relating to someone for whom you care:
· Check with the person that it is a document that still reflects the person wishes.
· Ensure it is shared with all those to whom it relates e.g. the multi agency care team, carers, GP, consultant.
· Any obvious conflict with a current or proposed plan of treatment or care must be openly discussed with the person and the team providing care as soon as possible.
· Remember in some cases, an Advance Statement can be overruled e.g. when a person is subject to certain sections of the Mental Health Act 1983.
· You must record that you have assessed the persons capacity and feel it is sufficient for them to make a binding statement.
Frequently Asked Questions
Q. Are advanced statements legally binding?
A. Yes but there are important caveats. Remember, there are many types of advanced statement, which you can make. Importantly, an advance statement can take the form of a directive. A directive is a command, which tells doctors/care workers specific treatments and other care, which you do not want to receive, in exactly the same way as you might refuse to consent to a treatment. This is legally binding and can only be overridden if the person in receipt of care is detained under the Mental Health Act, 1983. Even in these circumstances, the doctor must demonstrate that he/she has considered the directive and is prepared to defend his/her reason for not complying with it. You cannot direct that you do not want basic care.
A statement may also indicate the type of care a person would wish to receive in the event of him/her losing capacity. The persons providing such care in this instance do not have to comply with such requests, but again they do have to demonstrate why they feel such care is not in your best interests at the time.
Q. Can an advance statement be overruled?
A. Yes. As mentioned above there are a limited number of ways in which an advance statement can be overruled.
1. If the advance statement directs that care workers do, or do not do something which a person with capacity could not request. For example, a person cannot direct a doctor to do something that is illegal.
2. Where there is evidence to suggest that when the person made the advance statement, he/she did not have mental capacity.
3. Where a person is detained under treatment sections of the Mental Health Act, 1983 and the responsible medical officer feels that a particular treatment is in that persons interest, even where there is a directive stating that he/she does not want that specific treatment. However, the doctor must demonstrate that he took the directive into consideration.
4. Where a person has made a non-directive statement which care workers feel is not in that persons best interest.
Q. Who should make an advanced statement?
A. Anyone who has capacity can make an advanced statement. Advanced statements are merely a means of making known to care workers the sort of treatment and care you would like in the event of a future physical or mental condition incapacitating you. Advance statements are particularly useful for people who suffer from serious mental disorders where there is a chance of relapse. Advance statements provide the opportunity to review a period of ill health and record the aspects of care, which worked well, and those, which did not. Care in this respect can mean not only medical and nursing care, but also wider social issues, for example, who should look after a pet. From this it is clear that a good time to make an advanced statement is at the end of a period of in service user care, as part of the discharge planning process.
Q. What is capacity?
A. Capacity - the ability to understand a proposed action. Taking into account, the broad nature of the proposed action, its outcome if carried out and not carried out, weigh the information in balance and arrive at a decision.
Q. I have made an advance statement, where should I keep it?
A. Obviously, advanced statements are only of any use if those who are providing care for you know of their existence. Of course it is up to the individual concerned to decide with whom the statements are shared. If your advance statements relate mainly to the possibility of mental health problems and you have received specialist treatment in the past, then it would be wise for the hospital where you normally receive your care to have a copy. A copy of your advanced statement can then be filed in your case notes, and the file marked to alert doctors, nurses and others that you have made an advance statement.
You do not have to provide the hospital with a copy of your advance statement. If you choose not to, it is important that someone else knows of its existence e.g. your husband/wife/friend, and is able to provide the doctors and other health care professionals with your statement if you become incapacitated.
Q. My advance statements have been placed in my case notes, but I want to change some aspects of them (or withdraw them altogether) how do I do this?
A. If you want to change your statement, you must complete another one entirely. Ensure that the old one is destroyed clearly the existence of two contradictory advanced statements must be avoided. Send a copy of the new statement to the medical records department of the hospital where you normally receive treatment. Similarly, should you no longer wish to have an advanced statement, write to the medical records department giving your name, date of birth and address, asking for your statement to be destroyed.
Q. Do doctors or other health/social services staff have to be involved if I wish to make an advanced directive?
A. No. You should have someone witness your advanced statement who can validate that at the time of writing it you had the capacity to make the statement, but this person can be anyone who knows you. Health care staff do not have to agree with your advance statement.