Planning for the Future
This article looks at various options as we age, if we were to become very ill or incapacitated or at end of life, so that we can be informed and prepared. There are several aspects that you may wish to consider and discuss with your family/friends. Please note this article was prepared before Covid-19 and prompted from patients’ questions to us and covers the following areas:
- Advanced care plans
- Advance decisions
- Advance statements
- Lasting Power of Attorney (LPA)
- Care: at home from family, community carers or residential/nursing home – especially important in highlighting the need for hormone replacements and how taken
An advanced care plan
An advanced care plan can include:
- Lasting Power of Attorney (LPA) – property and financial affairs and/or health and welfare
- DNACPR (do not attempt cardiopulmonary resuscitation) or DNAR (do not attempt resuscitation) order – these were previously known excluding the word “attempt” i.e. DNCPR and DNR
- Advance decision to refuse treatment
- Advance statement
- Treatment Escalation Plan and Resuscitation Decision Record (TEP)
You can specify any or all of these in your advanced care plan.
Be sure to be specific about what circumstances the advanced care plan would apply to.
- A DNAR or DNACPR order
- Refusal to be on a life support machine or any life-extending treatment
- Refusal of any blood transfusion (e.g. due to religious beliefs)
- Specific hygiene preferences when in a coma e.g. to have a carer of the same gender washing you
- Exclusions of certain medications due to the side effects
- Prioritising dignity and quality of life, over prolonging its duration at any cost
What is an advance decision?
People who understand the implications of their choices can state in advance how they wish to be treated if they suffer loss of capacity. An advance decision (sometimes known as a Living Will) can be of two main types:
- a statement authorising or requesting specific procedures
- a clear instruction refusing some or all medical procedures (also called an advance directive)
Who can make an advance decision?
Any person can make an advance decision, including an individual under the age of 18, although advance decisions will only be legally binding in certain circumstances (see below).
Are advance decisions legally binding?
Advance refusals of treatment have long been legally binding under common law. Advance requests or authorisations have not had the same binding status but should be considered in assessing best interests. Following the Burke case in 2005, it is accepted that there is a duty to take reasonable steps to keep the patient alive (e.g. by provision of artificial nutrition and hydration) where that is the patient’s known wish.
In England and Wales, advance decisions are covered by the Mental Capacity Act. Patients, who are aged 18 or over and who have capacity, may make an advance refusal of treatment orally or in writing, which will apply if they lose capacity. To be valid and legally binding, the advance decision must be specific about the treatment that is being refused and the circumstances in which the refusal will apply. Where the patient’s advance decision relates to a refusal of life-prolonging treatment, this must be recorded in writing and witnessed. The patient must acknowledge in the written decision that they intend to refuse treatment even though this puts their life at risk.
In Scotland and Northern Ireland, advance decisions are not covered by statute but it is likely they are covered by common law. An advance refusal of treatment is likely to be binding in Scotland and Northern Ireland if the patient was an adult at the time the decision was made (16 years old in Scotland and 18 in Northern Ireland). The patient must have had capacity at the time the decision was made and the circumstances that have arisen must be those that were envisaged by the patient.
In the case of young people under the age of 18, advance decisions should be considered and accommodated, if possible, but do not necessarily have the same status as those of adults.
Advance decisions can be overruled if the individual is being treated compulsorily under mental health legislation. If an advance decision does not meet the legal criteria but appears to set out a clear indication of the patient’s wishes, it will not be legally binding but should be taken into consideration in determining the patient’s best interests.
In England and Wales, an advance decision is superseded if the patient subsequently gives someone lasting power of attorney to make that decision. (If you make an advance decision after making a LPA your attorney won’t be able to override what is written in the advance decision.) If doubt exists about what the patient intended, the Court of Protection in England and Wales, the High Court in Northern Ireland and the Court of Session in Scotland can clarify the situation.
What form should an advance decision take?
An advance decision can be a written document, a witnessed oral statement, a signed printed card, a smart card or a note of a particular discussion recorded in the patient’s file. In England and Wales, the decision should comply with the provisions of the Mental Capacity Act if it is to be legally binding.
An Advance Decision pack can be downloaded from https://compassionindying.org.uk/library/advance-decision-pack/. This pack contains an advanced decision form and comprehensive guidance notes explaining everything you need to know to complete it. The page also contains a link to a free website that can be used to create an advanced decision online.
Reviewing/updating an advance decision
It is advisable to review an advance decision regularly and update it if necessary. If you’d like to make any changes in an existing advance decision, you can either make a new one or change the information on the existing document and sign/date the changes. If you don’t wish to make any changes write the statement “I have reviewed this advance decision and confirm that it reflects my wishes” on the form and sign/date next to this. Give updated versions to everyone who had a copy of the original advance decision and ask them to destroy the old one.
An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future health or social care. The aim of an advance statement is to provide a guide to anyone who might have to make decisions in your best interest if you have lost the capacity to make decisions or to communicate them.
An advance statement is not the same as an advance decision. An advance statement is not legally binding, but anyone who is making decisions about your care must take it into account.
For more information see https://www.nhs.uk/conditions/end-of-life-care/advance-statement/
Lasting Power of Attorney (LPA)
A Lasting Power of Attorney is a legal document that lets you appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.
An attorney can be a friend, relative or a professional, but they must be over the age of 18 and must have the mental capacity to make their own decisions. If you appoint more than one attorney then you must decide whether they can make decisions separately or whether all attorneys must agree on any decisions made.
There are two types of LPA:
Property and Financial Affairs LPA
A property and financial affairs LPA gives your attorney(s) the power to make financial decisions for you e.g. managing bank accounts or selling your house. Your attorney(s) have the power to take over the management of your financial affairs as soon as the LPA is registered, unless the LPA states that this can only happen after you lose the capacity to manage your own financial affairs.
Since 1 October 2007, the Enduring Power of Attorney (EPA) has been replaced by the Property and Financial Affairs LPA. However, valid EPAs that were already arranged before 1 October 2007 will still stand.
Health and Welfare LPA
A health and welfare LPA allows your attorney(s) to make decisions regarding your health and personal welfare e.g. where you should live, day-to-day care or about your medical treatment. This LPA only comes into force if/when you lose the ability to make these decisions for yourself.
Registering a LPA
When you’ve made a lasting power of attorney (LPA), it needs to be registered with the Office of the Public Guardian (OPG). It can take up to 10 weeks to register an LPA if there are no mistakes in the application.
There is a charge to register each LPA – if you create both a property and financial affairs LPA and a health and welfare one, you have to pay this charge for each one. If you create an LPA and you receive certain means-tested benefits when you apply to register it, you won’t have to pay anything. There is also a 50% reduction in the registration fee if your income before tax is less than £12,000 a year.
Lasting Power of Attorneys are exclusive to you and the amount of power and limits of that power are decided by you. LPA forms can be completed and registered without the input of a solicitor. If you require help completing the forms, your local Citizens Advice office may be able to assist, although they will not be able to offer any legal guidance. If legal help is sought from a solicitor, then there may a cost attached.
For further information see https://www.gov.uk/power-of-attorney, which includes detailed information on how to make and register a LPA, including links to download the LPA forms (which you can then print and complete by hand) and to create a LPA online. This website also contains instructions for what to do if you need to make changes to a LPA (e.g. if you want to remove an attorney or if your attorney’s details change). Note - you do not need to inform the OPG if you change your address in your LPA after the LPA has been registered.
Northern Ireland Power of Attorney
The law on Power of Attorney (PoA) in Northern Ireland is somewhat different. You do not have to register the PoA with the courts unless the Attorneys need to get the Courts to recognise incapacity in the person for whom they are acting. The initial document can be simply drawn up with the help of a solicitor, and if mental incapacity needs registration, the court process is relatively speedy and cheap – see below and this link to useful page on Age UK’s Northern Ireland website https://www.ageuk.org.uk/northern-ireland/information-advice/money-matters/legal-issues/power-of-attorney/.
An advice note is necessary to inform patients as to what it is, why it is helpful, how the initial document is drawn up and kept with the patient's Solicitor. The information needs to say very clearly:
You will not be able to access your dependant’s finances to support them without it, and going through the courts to obtain this is a very long and tiresome and costly process.
Do not include an elderly attorney because if they die, the whole Power collapses.
The Power can be written for it to be active immediately or to be held in until it is deemed to be necessary. Either way, it is really essential to register the document and any required additional ID or other information on the person setting up the power and their attorneys with the financial sources of the person requiring/potentially requiring care, e.g. bank, building society, state and occupational pension, Disability Living Allowance provider. Each funding source will have different requirements on this and who can certify documents. There is never going to be an ideal time to do this, but you really do not want you and your attorneys to be doing it when you are lying in a hospital bed.
Contrary to most people’s perception, PoA does not only apply to mental incapacity, but can be used if the person granting that power is so physically unwell as to be unable to deal with financial and care affairs for themselves, as long as they have empowered their attorneys to step in when this happens.
If the person needing care becomes mentally incapable, this has to be registered by the holders of PoA with the Office of Care and Protection at the High Court, Tel: 0300 200 7812. The process is simple and takes about two weeks.
Care: at home from family, community carers, or residential nursing home
Speak openly and candidly with your family and support network about your care needs such as hormone replacements and your wishes with regard to treatment options. Devise a written care plan that covers your day to day needs and how you wish to be treated should other health issues arise, e.g. severe stroke.
Speak with the lead person for your community care, ensure they fully understand your current care needs and provide them with written information regarding this to hold on file. If you make an advanced directive be sure to inform them of this also and to provide them with a copy to hold on file so that your wishes are respected should circumstances listed arise.
These community carers may include your GP, practice nurse, district nurse, community matron, endocrinologist and endocrine nurse.
Residential care or nursing home
Again, discuss with the lead nurse for your care your current health needs and your advanced directive wishes. This document should be held on file and all staff should be made aware of it and your wishes listed in it. This can be especially important to help allay fears of not having hormone replacements given when they are needed. By providing all those involved in your care, with the same detail and information regarding your needs and wishes, you can ensure that the same level of care is continued no matter where that care is given.
Pituitary replacement hormones within advanced care planning
Dr Lawrence in Solent newsletter (March 2020)
‘In a palliative care (e.g. hospice) setting, we would normally continue steroids until very close to the end, partly to avoid hastening death which is never our aim and partly because as anyone who has ever had an adrenal crisis will tell you, it is not a nice experience. An individual with capacity can make their own decision in advance (an ‘advance directive’ or ‘advance decision to refuse treatment’) or at any time about not receiving life-prolonging treatment (which would include steroid hormones). The risk with decisions taken in advance is not being able to specify or consider all the exact circumstances that could arise. Such a decision is binding on doctors if you subsequently lose capacity (the ability in law to make your own decisions). My own view is that in most circumstances, withholding steroids in anything but the last few hours of life might well risk a less rather than more comfortable passage, but I also respect the fact that patients absolutely have a right to refuse medical treatment of any sort, which ultimately has to be respected. All of this is different to a decision on resuscitation which only relates to attempts to re-start someone’s heart after it has stopped and these DNACPR decisions very explicitly do not cover withholding any other sort of treatment.’