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Planning for Care at the End of Life

Discussing death is a difficult task and many people, both medical and non-medical, avoid discussions about death because of this. Nevertheless, it is a duty for medical practitioners to discuss care sensitively with patients that may be approaching the end of life to ensure that they receive the right care for them. Advance care planning discussions are a means of clarifying the patient’s wishes at the end of life.

According to the international consensus definition of advance care planning, it is:

"a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness."

The patient should be made aware that in making their wishes known verbally to the healthcare team responsible for their care, these wishes would be taken into account if they lose capacity to make decisions but are not legally binding.

Areas that the surgeon could discuss about future care of a patient if they lose capacity, adapted from Treatment and Care Towards the End of Life: Good Practice in Decision Making, include;

  • The patient’s wishes, preferences or fears in relation to their future treatment and care
  • The feelings, beliefs or values that may be influencing the patient’s preferences and decisions
  • What elements of care are important to them and what would they like to happen in the future
  • What would they not want to happen or worry about happening in the future?
  • What would be an unacceptable health state for the patient?
  • The family members, others close to the patient and if there is an appointed person with lasting power of attorney who they would like to be involved in decisions about their future care
  • Interventions which they may or may not want to be undertaken in an emergency, e.g. operations, cardiopulmonary resuscitation, admission to an intensive care unit, prolonged mechanical ventilation, clinically assisted nutrition and hydration
  • The patient’s preferred place of care
  • The patient’s need for religious, spiritual or other support

Within the Mental Capacity Act, these areas for discussion are summarised as follows:

Advanced Care Planning Discussion diagram
What you do want- An advance statement of preferences – a simple discussion that is recorded and reviewed, that is not a legally binding document, but a guide to the patient’s wishes and preferences to inform later decision making including future treatment options

What you don’t want – this can be included in the advance statement but some require specific refusal, eg with an An Advanced Decision to Refuse Treatment or ADRT. This also will include resuscitation discussion or DNACPR or respect

Who will speak for you? This includes the nominated proxy spokesperson (not always the next of kin) or Lasting Power of Attorney where present.

In the case where surgeons are unable to answer questions that patients may ask, for example, issues related to palliative care medications or legal documents at the end of life, they should signpost to appropriate healthcare or legal professionals with this expertise.

Where a patient lacks capacity (in the case of dementia, cognitive failure or reduced level of consciousness) and has not previously recorded their preferences, a Best Interest discussion is undertaken with the family or the nominated spokesperson.

Advance care plans

Advance care plans are the formal documentation of the patient’s wishes, preferences and fears at the end of life, often made in conjunction with a healthcare professional. Such a plan might be known by other names such as advanced directive or living will. These are designed to be used to ensure that ongoing care takes the patient’s views into account, especially if they lose capacity. There are several structured areas that are recorded, usually done in conjunction with a health professional in palliative care, GPs or community nursing teams. An example from the Good Standards Framework is given in Appendix 3.

As a surgeon it is important to know if the patient has already made an advance care plan. Where the patient has not done so and wishes to formalise their wishes, the surgeon should assist patients with making one, including direction to other healthcare professionals or sources of information where necessary.  

Advance care plans are not legally binding but are a reflection of a patient’s wishes, preferences and beliefs and so should be used when the surgeon is deciding on the best interests of a patient lacking capacity.

Advance Statements

An advance statement is similar to an advance care plan but is written by the patient independent of a healthcare professional and voices the patient’s wishes and preferences should they lack capacity in the future. It does not need to be signed by the patient and witnessed, but often is. An advance statement is not legally binding, but once again if it does exist it is a reflection on the wishes and preferences of a patient and should be taken into account when the surgeon is deciding on the best interests of a patient lacking capacity.

Advance decision to refuse treatment (ADRT)

The ADRT is a written statement refusing specific treatments in future circumstances should the patient lose capacity, signed by the patient and a witness as a minimum. It is legally binding in England and Wales if it is clearly applicable to the patient’s circumstances, but this has not yet been tested as case law in Scotland. For ADRTs at the end of life, they must include that the decision still applies even if life is at risk or shortened as a result and should have been updated recently to be considered truly valid (preferably within the last 2 years).

A valid ADRT will ensure that;

  • The patient was an adult when the decision was made (16 years old and over in Scotland, 18 years old and over in England, Wales and Northern Ireland)
  • The patient had capacity at the time the decision was made
  • The patient was not subject to undue influence in making the decision
  • The patient made the decision based on adequate information about the implications of their choice
  • 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
  • The decision has not been withdrawn by the patient
  • The patient has not appointed an attorney since the decision was made to make decisions on their behalf
  • More recent actions or decisions of the patient are clearly consistent with the terms of their earlier decision and there is no indication the patient has changed their mind

If there are any concerns over the validity of an ADRT, it is advisable to seek legal advice.

Even if the ADRT does not fit the criteria to be legally binding, it should still be taken into account as a reflection of the patient’s wishes and preferences by the doctor making the decision in the best interests of a patient that lacks capacity.

For further clarification, see the Mental Capacity Act 2005 and the GMC’s Treatment and Care Towards the End of Life: Good Practice in Decision Making.7

Lasting power of attorney (LPA), or nominated spokesperson

Formerly called a legal proxy, a health and welfare lasting power of attorney is a legally binding document entitling the patient, otherwise known as the ‘donor’ to grant an appointed ‘attorney’ the power to make decisions about their health and welfare should they lose capacity. It is important to note that in some cases restrictions will be in place and some ‘attorneys’ will not be authorised to make decisions about life-sustaining treatment. If this is the case, these decisions will be in the hands of the surgeon/clinician responsible for the patient’s care to act in their best interests.

An LPA must be registered with the office of the public guardian to be valid. Surgeons should also be aware that another form of the LPA exists, which gives attorneys the power to make decisions over property and financial affairs, but not health and welfare decisions.

When communicating with an LPA, you should inform them of the risks, benefits and burdens of all available options as if they were the patient, as detailed in section C. You must ensure that you do not co-erce them into making a decision.

Although the proportion of patients with LPAs is increasing, many still do not have such arrangements, so seeking and recording the name of the person they wish to nominated as their proxy spokesperson  (who often might not be their next of kin) is important for future decision making. This is often included on the advance statement and within the Mental Capacity Act, such views should be taken into account.

Next: Team-working at the end of life >>

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