Working with the principles and decision-making models  - cont.

As treatment and care towards the end of life are delivered by multi-disciplinary teams often working across local health, social care and voluntary sector services, you must plan ahead as much as possible to ensure timely access to safe, effective care and continuity in its delivery to meet the patient’s needs.

The emotional distress and other pressures inherent in situations in which patients are approaching the end of their life sometimes lead to misunderstandings and conflict between medical professionals and patients and those close to them, or between members of the healthcare team. However, this can usually be avoided through early, sensitive discussion and planning about how best to manage the patient’s care.

Patients whose death from their current condition is a foreseeable possibility are likely to want the opportunity (whether they are in a community or hospital setting) to decide what arrangements should be made to manage the final stages of their illness. This could include having access to palliative care, and attending to any personal and other matters that they consider important towards the end of their life. For any possible future emergency decisions, discussions will be easier to do in advance than in a time-pressured situation when the patient might be in pain, confused or afraid. Discussing options in advance doesn’t remove the need to have a further dialogue immediately before providing treatment, and at regular intervals as treatment or care progresses. Even if there’s a care plan in place, or the patient’s made a decision in advance, you should still talk to them about the options available in case the options have changed or the patient has changed their mind.

If a patient in your care has a condition that will impair their capacity as it progresses, or is otherwise facing a situation in which loss or impairment of capacity is a foreseeable possibility, you should encourage them to think about what they might want for themselves should this happen, and to discuss their wishes and concerns with you and the healthcare team. Your discussions should cover:

1. the patient’s wishes, preferences or fears in relation to their future treatment and care
2. the feelings, beliefs or values that may be influencing the patient’s preferences and decisions
3. the family members, others close to the patient or any legal proxies that the patient would like to be involved in decisions about their care
4. interventions which may be considered or undertaken in an emergency, such as cardiopulmonary resuscitation (CPR), when it may be helpful to make decisions in advance
5. the patient’s preferred place of care (and how this may affect the treatment options available)
6. the patient’s needs for religious, spiritual or other personal support. 

Depending on the patient’s circumstances, it may also be appropriate to create opportunities for them to talk about what they want to happen after they die. Some patients will want to discuss their wishes in relation to the handling of their body, and their beliefs or values about organ or tissue donation.

You must approach all such discussions sensitively. If you are unsure how best to do this or how to respond to any non-clinical issues raised by the patient, you should refer to relevant guidelines on good practice in advance care planning. If the patient agrees, you should involve in the discussions other members of the healthcare team, people who are close to the patient, or an independent advocate.

Some patients may not be ready to think about their future care, or may find the prospect of doing so too distressing. However, no-one else can make a decision on behalf of an adult who has capacity. If a patient asks you to make decisions on their behalf or wants to leave decisions to a relative, partner or friend, you should explain that it is important that they understand the options open to them, and what the treatment will involve. If they do not want this information, you should try to find out why.

If the patient still does not want to know in detail about their condition or the treatment, you should respect their wishes as far as possible. But you must explain the importance of providing at least the basic information they need in order to give valid consent to a proposed investigation or treatment. This is likely to include what the investigation or treatment aims to achieve and what it will involve. For example, whether a procedure is invasive; what level of pain or discomfort they might experience and what can be done to minimise it; what they should do to prepare for the investigation or treatment; and whether it involves any serious risks.

If the patient insists that they do not want even this basic information, you will need to judge whether their consent is valid so that you can proceed. This is more likely to be the case if the proposed option is a well-established intervention commonly used for treating the condition they have, and there’s reason to believe the patient wants to be treated or cared for rather than take no action. You should consider seeking advice from your medical defence body or professional association in these circumstances. You must record the fact that the patient has declined relevant information and who they asked to make the decision about treatment. You must also make it clear that they can change their mind and have more information at any time.

Apart from circumstances in which a patient refuses information, you should not withhold information necessary for making decisions (including when asked by someone close to the patient), unless you believe that giving it would cause the patient serious harm. In this context ‘serious harm’ means more than that the patient might become upset or decide to refuse treatment. If you are considering withholding information from a patient, you must follow the advice at paragraphs 14 and 15 of Decision making and consent. If you do withhold information from the patient, you must record your reasons for doing so in the medical records, and be prepared to explain and justify your decision. You should regularly review your decision and consider whether you could give information to the patient later, without causing them serious harm.

If a patient wants to nominate someone to make decisions on their behalf if they lose capacity, or if they want to make an advance refusal of a particular treatment, you should explain that there may be ways to formalise these wishes, such as appointing an attorney or making a written advance decision or directive.²³ You should support a patient who has decided to take these steps. You should provide advice on the clinical issues and recommend that they get independent advice on how to formalise their wishes.

You must make a record of the discussion and of the decisions made. You should make sure that a record of the advance care plan is made available to the patient, and is shared with others involved in their care (provided that the patient agrees), so that everyone is clear about what has been agreed. (See also paragraphs 22 - 23 about working in teams and across service boundaries.) If a patient makes an advance refusal of treatment, you should encourage them to share this information with those close to them, with other doctors, and with key health and social care staff involved in their care.

You must bear in mind that advance care plans need to be reviewed and updated as the patient’s situation or views change.

If a patient lacks capacity and information about a written or verbal advance refusal of treatment is recorded in their notes or is otherwise brought to your attention, you must bear in mind that valid and applicable advance refusals must be respected. A valid advance refusal that is clearly applicable to the patient’s present circumstances will be legally binding in England and Wales²⁴ (unless it relates to life-prolonging treatment, in which case further legal criteria must be met). Valid and applicable advance refusals are potentially binding in Scotland²⁵ and Northern Ireland²⁶, although this has not yet been tested in the courts.

Written and verbal advance refusals of treatment that are not legally binding, should be taken into account as evidence of the person’s wishes when assessing whether a particular treatment would be of overall benefit to them.

If you are the clinician with lead responsibility for the patient’s care, you should assess both the validity and the applicability of any advance refusal of treatment that is recorded in the notes or that has otherwise been brought to your attention. The factors you should consider are different in the four UK countries, reflecting differences in the legal framework (see the legal annex). However, in relation to validity, the main considerations are that:

1.  the patient was an adult when the decision was made (16 years old or over in Scotland, 18 years old or over in England, Wales and Northern Ireland)
2. the patient had capacity to make the decision at the time it was made (UK wide)
3. the patient was not subject to undue influence in making the decision (UK wide)
4. the patient made the decision on the basis of adequate information about the implications of their choice (UK wide)
5. if the decision relates to treatment that may prolong life it must be in writing, signed and witnessed, and include a statement that it is to apply even if the patient’s life is at stake (England and Wales only²⁷)
6. the decision has not been withdrawn by the patient (UK wide)
7. the patient has not appointed an attorney, since the decision was made, to make such decisions on their behalf (England, Wales and Scotland)
8. more recent actions or decisions of the patient are clearly inconsistent with the terms of their earlier decision, or in some way indicate they may have changed their mind.

In relation to judgements about applicability, the following considerations apply across the UK:

1. whether the decision is clearly applicable to the patient’s current circumstances, clinical situation and the particular treatment or treatments about which a decision is needed
2. whether the decision specifies particular circumstances in which the refusal of treatment should not apply
3. how long ago the decision was made and whether it has been reviewed or updated (this may also be a factor in assessing validity)
4. whether there are reasonable grounds for believing that circumstances exist which the patient did not anticipate and which would have affected their decision if anticipated, for example any relevant clinical developments or changes in the patient’s personal circumstances since the decision was made.

Advance refusals of treatment often do not come to light until a patient has lost capacity. In such cases, you should start from a presumption that the patient had capacity when the decision was made, unless there are grounds to believe otherwise.

If there is doubt or disagreement about the validity or applicability of an advance refusal of treatment, you should make further enquiries (if time permits) and seek a ruling from the court if necessary. In an emergency, if there is no time to investigate further, the presumption should be in favour of providing treatment, if it has a realistic chance of prolonging life, improving the patient’s condition, or managing their symptoms.

If it is agreed, by you and those caring for the patient, that an advance refusal of treatment is invalid or not applicable, the reasons for reaching this view should be documented.