What is advance care planning?


28th April 2022

Paula Shea looks at advance care planning, the various options and how to prepare for life-threatening or life-sustaining situations.

Health and welfare LPAs v advance decisions

This article was first published in The Law Society Private Client Section.

The distressing scenes of patients hospitalised with coronavirus (COVID-19), including TV presenter Kate Garraway’s heartbreaking story of her husband’s battle with the virus, has prompted many of our clients to make plans for their possible future incapacity. The reality is that everyone will have to make decisions about their own health and care, or that of a loved one, at some point in their lives. Advance care planning can minimise future distress. However, sensitivity is needed when broaching this uncomfortable subject.

This look at advance care planning considers advance decisions (ADs), as defined in the Mental Capacity Act 2005 (MCA) and lasting powers of attorney for health and welfare (H&W LPAs), which form an important part of mental capacity planning.

Advance care planning terminology

Consent to treatment

Broadly, no care or treatment may be given to an adult who has mental capacity, without their consent. Prior to treatment or an operation, the healthcare provider will obtain advance consent from the individual.

H&W LPAs

Like LPAs for property and financial affairs (P&F LPAs), H&W LPAs are governed by the MCA and the Lasting Powers of Attorney, Enduring Powers of Attorney and Public Guardian Regulations 2007 (as amended). A H&W LPA may cover all or certain matters concerning the donor’s health and welfare, including giving / refusing consent to medical treatment, their diet, lifestyle choices, care and support. H&W LPAs may only be used when the donor lacks mental capacity to make their own decisions.

Advance directives

This is an umbrella term often used to cover ADs, living Wills and other matters relating to critical and end of life care.

Advance decisions

ADs are enshrined in statute and if executed correctly are legally binding under the MCA. They are sometimes referred to as ‘living wills’. However, they operate in the donor’s lifetime and have no testamentary effect. If an AD exists, and is valid and applicable to the donor’s current circumstances and treatment options, then the healthcare provider must follow the AD. If the healthcare provider feels that treatment would be advisable (contrary to the AD), then criminal, civil and/or regulatory action may be taken against that healthcare provider. Healthcare providers must establish the validity of the AD and whether there is a H&W LPA in place.

If an AD is refusing life-sustaining treatment, it must be in writing, signed, and witnessed and include a clear written statement that it applies to the specific treatment, even if life is at risk. It must be valid at the time it was put into effect – care should be taken if there is evidence that the donor has changed their mind (this includes taking actions that are incompatible with the AD). The AD must be applicable to the current circumstances. If it does not specify the treatment that is now proposed, or if the circumstances envisaged at the time of the donor writing the AD have now changed, then the AD may not be applicable. The healthcare provider will wish to consider the length of time that has passed since the AD was made and any changes in the personal life of the donor that may affect the current circumstances.

Advance decisions v health and welfare LPAs: at a glance

ADH&W LPA
No requirement to submit to a third party for validation and registration.Must be registered with the Office of the Public Guardian (OPG) before it can be used. At the time of publication of this article, OPG advises that this can take up to 20 weeks.
Inexpensive and quick to create.Costs incurred to draft an LPA, plus £82 registration fee.
No formal requirements for creation, unless refusing life-sustaining treatment.Must be made on a prescribed form, executed in a prescribed sequence by the donor, certificate provider and attorneys and registered before it may be used.
Restricted to refusals of medical treatment.Attorneys can make all manner of health and welfare decisions on the donor’s behalf if they lack capacity, although they are limited by legislation and can be restricted by the donor.
Withholding treatment that is refused by a valid and applicable AD need not be necessarily in the best interests of the patient.A decision by an attorney on behalf of the donor must always be in the donor’s best interests.
There is no formal mechanism to allow others to discover whether a person has made an AD.Anyone can search the register maintained by OPG to determine whether a person has made a valid LPA.
An anticipatory refusal of medical treatment is made according to the wishes of the person at the time it is made.Consent to or refusal of treatment by H&W LPA attorney is made at the time treatment is proposed and after considering all relevant circumstances to determine what is in the donor’s best interests.

Advance statements

In contrast, advance statements are not legally binding. These documents explain an individual’s likes and dislikes regarding their health and welfare. They are a useful tool for documenting various wishes, including diet and other lifestyle choices, religious beliefs, and values. There is no formal requirement as to the format of an advance statement, but it is sensible to log a copy with all those involved in the individual’s care. Advance statements may be used to supplement H&W LPAs, akin to memoranda of wishes for wills.

Recommended summary plan for emergency care and treatment (ReSPECT)

The ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices. Patient preferences and clinical recommendations are recorded on a non-legally binding form which can be reviewed and adapted if circumstances change. The ReSPECT process can be for anyone, but will have increasing relevance for those who have complex health needs, likely to be nearing the end of their lives, or are at risk of a sudden deterioration in their health, or a cardiac arrest. Some people will want to record their care and treatment preferences for other reasons.

The ReSPECT process is increasingly being adopted within health and care communities around the UK.

Resuscitation

Clients may also wish to consider the implications of a ‘do not resuscitate’ order (DNR), ‘do not attempt resuscitation’ (DNAR) and ‘allow natural death’ (AND). These discussions are best left to the client and the medical professional, and generally are raised with the client during the hospital admission process or logged on their NHS record during discussion with the GP.

Health and welfare deputy orders

These orders are only granted by the Court of Protection (CoP) in limited circumstances. It is therefore advisable for clients to consider planning for their future health and welfare as part of their general estate planning. Health and welfare deputies appointed by the CoP are not authorised in respect of health and welfare decisions under section 20(5) of the MCA.

Our duty as legal professionals

The Law Society practice note on LPAs states: “Any solicitor intending to give advice about a lasting power of attorney (LPA) or act as an attorney under an LPA must be aware of the provisions in the Mental Capacity Act 2005… and the Mental Capacity Act 2005 Code of Practice.

“Solicitors should also be familiar with the relevant guidance produced by the Office of the Public Guardian.”

Capacity

Whether someone has the requisite capacity to give or refuse consent to medical treatment is governed by the statutory test contained in the MCA:

The individual:

  • should be assumed to have capacity, unless it is established otherwise (section 1(2)
  • should be supported to make the decision (sections 1(3) and 3(2))
  • should not be assumed to lack capacity because others consider the decision and outcome is unwise (section 1(4))
  • should not be treated as lacking mental capacity merely because of their age (for example, they are very old), their appearance, condition (such as have a diagnosis of dementia) or behaviour (section 2(3)), and
  • must have capacity to give or refuse consent at the time the treatment would need to be given (section 2(1)).

The individual will be considered to lack capacity, if they cannot understand, retain, use or weigh information relevant to the decision, or is unable to communicate their decision by any reliable means, at the time treatment is proposed to be given, because they have an impairment or disturbance in the mind or brain (sections 2(1) and 3(1)). Incapacity may be permanent or temporary (section 2(2)).

The person assessing capacity must form their opinion on the balance of probabilities (section 2(4)).

Health and welfare LPAs

It’s been possible to make a H&W LPA since 1 October 2007.

H&W LPAs enable any individual over the age of 18 with mental capacity (the donor) to choose another individual or individuals (called attorneys) to make decisions on their behalf. H&W LPAs are concerned with decisions about both the health and personal welfare of the donor, such as where to live, day-to-day care and medical treatment.

It is also possible to make a P&F LPA but consideration of that is beyond the scope of this article, save to say that one of the key differences between H&W LPAs and P&F LPAs is that a H&W attorney may only act in matters where the donor lacks capacity to decide for themselves (section 11(7) of the MCA).

In many cases, the donor will choose the same people to act as attorneys for both H&W LPAs and P&F LPAs, though this is not always appropriate. The donor should be advised to identify those with the most suitable skillset for the appointment and not assume that their H&W attorney(s) should be the same people as their P&FA attorney(s).

A H&W LPA can, if unrestricted, confer wide authority on the attorney(s). Donors will often wish to discuss the scope of a H&W LPA with their GP, other social care professionals, relatives, and friends in advance.

Life-sustaining treatment

Sufficient time and care should be taken by the client to consider instructions regarding life-sustaining treatment. In my experience, this subject will provoke a good deal of thought and questions from the client, and it is incumbent on us as advisers to facilitate that discussion.

Clients should be directed to section 5 of the H&W LPA. The LPA form contains the following definition / explanation:

“Life-sustaining treatment means care, surgery, medicine or other help from doctors that’s needed to keep you alive, for example:

  • a serious operation, such as a heart bypass or organ transplant
  • cancer treatment
  • artificial nutrition or hydration (food or water given other than by mouth)

“Whether some treatments are life-sustaining depends on the situation. If you had pneumonia, a simple course of antibiotics could be life-sustaining.

“Decisions about life-sustaining treatment can be needed in unexpected circumstances, such as a routine operation that didn’t go as planned.”

A H&W LPA will only confer authority on the attorney to make decisions concerning life-sustaining treatment if option A is chosen by the donor in the presence of a witness.

Advance decisions

Statutory de nition

ADs were put on a statutory footing by sections 24 to 26 of the MCA with effect from 1 October 2007.

Sometimes the terms ‘advance decision’, ‘advance directive’ and ‘living will’ are used interchangeably. It is the term ‘advance decision’ that is enshrined in the MCA.

ADs are more accurately referred to as advance decisions to refuse treatment (ADRTs), on the basis that their legal effect is limited to a refusal of consent to treatment. However, there is no reason why an AD cannot include positive expressions of preference about the provision of certain treatments. A statement that the client is in favour of a particular treatment, although not legally binding, may assist a healthcare professional in deciding what treatment is in the client’s best interests at a time when the client lacks capacity to make the decision (see section 4(6)(a) of the MCA, and the Mental Capacity Act Code of Practice (the code) at paragraphs 5.37-5.45).

Section 4(5) of the MCA states: “Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.”

Practitioners should ensure they are familiar with both the MCA and the code.

Chapter 9 of the code states: “An advance decision enables someone aged 18 and over, while still capable, to refuse specified medical treatment for a time in the future when they may lack the capacity to consent to or refuse that treatment.

  • An advance decision to refuse treatment must be valid and applicable to current circumstances. If it is, it has the same effect as a decision that is made by a person with capacity: healthcare professionals must follow the decision.
  • Healthcare professionals will be protected from liability if they:
    • stop or withhold treatment because they reasonably believe that an advance decision exists, and that it is valid and applicable
    • treat a person because, having taken all practical and appropriate steps to find out if the person has made an advance decision to refuse treatment, they do not know or are not satisfied that a valid and applicable advance decision exists.

“People can only make an advance decision under the Act if they are 18 or over and have the capacity to make the decision. They must say what treatment they want to refuse, and they can cancel their decision – or part of it – at any time.

  • If the advance decision refuses life-sustaining treatment, it must:
    • be in writing (it can be written by someone else or recorded in healthcare notes)
    • be signed and witnessed, and
    • state clearly that the decision applies even if life is at risk.
  • To establish whether an advance decision is valid and applicable, healthcare professionals must try to find out if the person:
    • has done anything that clearly goes against their advance decision
    • has withdrawn their decision
    • has subsequently conferred the power to make that decision on an attorney, or
    • would have changed their decision if they had known more about the current circumstances.
  • Sometimes healthcare professionals will conclude that an advance decision does not exist, is not valid and/or applicable – but that it is an expression of the person’s wishes. The healthcare professional must then consider what is set out in the advance decision as an expression of previous wishes when working out the person’s best interests (see chapter 5).
  • Some healthcare professionals may disagree in principle with patients’ decisions to refuse life- sustaining treatment. They do not have to act against their beliefs. But they must not simply abandon patients or act in a way that affects their care.
  • Advance decisions to refuse treatment for mental disorder may not apply if the person who made the advance decision is or is liable to be detained under the Mental Health Act 1983.

“9.5 People can only make advance decisions to refuse treatment. Nobody has the legal right to demand specific treatment, either at the time or in advance. So no one can insist (either at the time or in advance) on being given treatments that healthcare professionals consider to be clinically unnecessary, futile or inappropriate. But people can make a request or state their wishes and preferences in advance.

Healthcare professionals should then consider the request when deciding what is in a patient’s best interests (see chapter 5) if the patient lacks capacity.

“9.6 Nobody can ask for and receive procedures that are against the law (for example, help with committing suicide). As section 62 sets out, the Act does not change any of the laws relating to murder, manslaughter or helping someone to commit suicide.”

Refusing treatment

Clients will often consider making an AD:

  • if they have been diagnosed with a terminal or degenerative illness
  • if they have personal beliefs (including religious and spiritual) that are relevant to their medical treatment, or
  • as part of putting their affairs in order.

The benefit of making an AD is that wishes in relation to their future medical treatment are more likely to be followed. This is particularly the case where those wishes include the refusal of one or more forms of life-sustaining treatment.

Many clients (incorrectly) view ADs as a method by which euthanasia is endorsed – this is not the case.

It is also not possible to exclude basic care such as food and water (by mouth), and the provision of warmth and shelter. Since artificial nutrition and hydration are classed as medical treatments, they may be refused through an AD.

Advance care planning - best of both worlds

It is possible for a H&W LPA and an AD to work in harmony. It is imperative that you make clear to the client that any AD made after their H&W LPA may take precedence over the authority of their H&W attorneys to give or refuse consent to the treatment refused in the AD. Equally, the client should be advised that, under section 25(2)(b) of the MCA, if a H&W LPA is made after an AD, the AD will be invalid if it confers authority on an attorney to make decisions about the same treatment:

“(2) An advance decision is not valid if P –

(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates….”

It is important to raise the issue of life-sustaining treatment with your client so they can cover this in a H&W LPA, if they wish.

Remember that if a H&W LPA and an AD are signed by the client on the same day, the H&W LPA will not be legally valid until it is registered with OPG. Depending on the client’s wishes and instructions, it may therefore be necessary to sign a new AD after the H&W LPA has been registered. It is imperative that detailed instructions are taken from the client to ensure that their wishes are carried out.

Practical advice for advance care planning

Capacity assessment

Where there is any doubt about your client’s capacity to make an AD or a H&W LPA, you must obtain a full, reasoned, and contemporaneous written assessment of capacity by a suitably qualified medical practitioner.

Healthcare professionals

You should encourage your client to discuss their wishes with their GP or other healthcare professional or specialist organisation. There are numerous organisations able to assist individuals here. For example, Hospice UK’s Dying Matters campaign aims to create an open culture in which people are comfortable talking about death, dying and bereavement.

Encourage your clients to log their ADs and H&W LPAs with their GP. The client is responsible for bringing any AD to the attention of their healthcare provider. In my experience, the records held by the GP practice and the hospital will not always marry up. It is therefore imperative that the client or their family ensures that a copy is also placed on their hospital records. I recall one client who was very anxious about her wishes being carried out. She was elderly and lived alone and when I visited her in her home, she proudly showed me copies of her LPA and AD, which had been ‘wallpapered’ visibly in her sitting room. Her theory was that in the event she was unexpectedly hospitalised, the paramedics would see the information.

The ‘message in a bottle’ scheme may be a ‘neater’ (in all senses) alternative.

Message in a bottle

Clients should also think about practicalities, particularly if they live alone. Many of my clients have benefited from using the Lions Clubs’ ‘message in a bottle’ scheme (lionsclubs.co/MemberArea/knowledge/lions-message-in-a-bottle). This is designed to encourage people to keep their personal and medical details on a standard form and in a common location – the fridge. The bottle is kept in the fridge, where the emergency services will be able to find it if called to the individual’s home. Emergency services are alerted to the existence of the bottle through labels displayed on the inside of the front door and the fridge door. It is a free scheme, saves the emergency services valuable time, and provides peace of mind for users and their loved ones.

Discuss with family

Clients are often concerned about the burden they are placing on their attorneys. In terms of advice, there is no substitute for suitably timed, ‘roundtable’ family discussions in which the client can make their wishes clear. I always remind my clients that just because they have conferred authority on their attorneys to make decisions about life-sustaining treatment, the attorneys cannot be compelled to do so. Attorneys and families also benefit from the donor documenting their wishes. This often provides comfort and reassurance when difficult decisions need to be taken.

Side letter with detailed plan/instructions

In addition to discussing matters with family, many clients find it helpful to prepare a detailed side letter setting out their wishes concerning matters pertaining to their health and welfare. They should be encouraged to add to this letter over time and as their circumstances change. Many clients like to specify scenarios or use real-life examples to explain their wishes.

Identity of H&W attorney and professional appointments

As professionals, we are often asked to take on attorney appointments, typically where the client does not have close family or friends suited to the role. This responsibility should not be taken on lightly or routinely, and each appointment should be considered separately. Unlike P&F LPAs, a trust corporation may not be appointed as a H&W attorney. It is a personal appointment.

My firm’s practice is to limit the number of H&W LPA appointments we take and only where there is no other viable alternative for the donor. We take detailed instructions regarding the donor’s wishes and document these for storage with the signed H&W LPA. The donor excludes decisions related to life- sustaining treatment in the LPA and we advise them to make an AD after they have made a H&W LPA. The Law Society’s practice note states:

“…Depending on the decision to be made, an attorney may reasonably be expected to consult with the attorney(s) of any other LPA made by the donor, whenever the donor’s best interests are being considered (section 4(7)(c), MCA 2005 and paragraph 5.55 of the Code of Practice (PDF)). It is also likely that EPA attorney(s) would also be consulted.

“Attorneys should also be aware that the demarcation between decisions made under a financial decisions LPA and a health and care decisions LPA may not always be clear, for example, where the donor lives is a welfare decision which also has financial implications. If there are conflicts, then an application can be made to the Court of Protection to resolve the issue, but this should only be considered as a last resort….”

Our role as professionals

We occupy a unique role as trusted advisers and it is incumbent on all of us to ensure that we are not only up to date with the law, but also on the practical measures which may benefit our clients in potentially life-threatening or life-sustaining situations.

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