Communication with Patients and Decision-Making at the End of Life
The following guidance should be used by surgeons looking after patients at the end of life. Decisions may be needed not only over when to and when not to operate or when to and when not to admit to intensive care, but also when to stop and start other treatments such as antibiotics and cardiopulmonary resuscitation.
Decision making must be in line with the Mental Capacity Act 2005.
Patients with capacity
Where patients have capacity, the decisions they make about the care they receive should be facilitated by the surgeon, including decisions about the end of life. Surgeons should make an assessment of the patient’s priorities before discussing the potential investigations and treatment available to them. The surgeon should explain
1. The likely/known diagnosis, prognosis and course of the condition
2. Lifestyle changes that may moderate the disease process
3. The right of the patient to refuse treatment and to make their own decisions about their care
4. The possible options, including the benefits, burdens and risks of each option. There should be a focus not only on the procedural risks but also on the associated functional outcomes and how these outcomes may align with the patient’s priorities. There should be a discussion about:
• The purpose and expected benefit of the treatment options
• The nature of the treatment
• The likelihood of success
• The clinicians involved in the treatment
• Potential follow up treatment
• The option not to undergo treatment
It is important for surgeons to note that patients should be made aware of all risks and benefits that may be material to them for all treatment options, in line with the Montgomery ruling and explained in further detail in Consent: Supported Decision Making.
Of particular note in decisions that may involve hastening or delaying the end of life, patients must be made aware that they can withhold their consent or change their mind about treatment at any time, but in time-critical conditions this may change their prognosis and the options available to them because of the nature of the disease process. A patient with capacity has the right to refuse a treatment without reason, even if this may be dangerous or fatal, and this refusal must be respected by the surgeon.
Surgeons must not assume that patients will have the same set of values, wishes or life priorities as the surgeon would have in a similar situation and the patient’s views must be respected. Time should be taken to learn and understand the priorities of the patient, which may affect their treatment choice. Surgeons should encourage discussion of the options with supporters, but must be sure that any decision the patient makes is voluntary and is not coerced either by the supporters or by the surgeon.
In cases where life may be threatened, it is important for the surgeon to ascertain whether the patient has made any advance care plans, advance statements, advance decisions to refuse treatment or has appointed someone with a lasting power of attorney. Where the patient has not made any of these advance arrangements, they should be sensitively urged to consider what care they may prefer should they lose capacity in the future and to communicate these preferences to the surgeon. The patient’s wishes should be well documented and shared with any other healthcare professionals involved in the patient’s care with the patient’s permission.
Patients who lack capacity
If a patient lacks capacity to make a decision, despite the best efforts being taken by the healthcare team to maximise their ability to understand, retain, use or weigh up information to make a decision and communicate their wishes, the surgeon should act in the best interests of the patient. The decisions that you or others take on the patient’s behalf must be based on whether the treatment would have overall benefit to the patient.
In the situation where the patient lacks capacity, decisions over end of life care can be challenging, particularly so if such decisions affect the quality of the patient’s remaining life. Ultimately the decision for what is in the best interests of the patient lies with the treating clinician but this decision should be informed by considering what you know of the patient’s preferences. You should consult the opinions of other healthcare professionals who know the patient well in addition to supporters such as relatives, friends and carers of the patient. In England and Wales, if there is no one willing or able to represent the patient, an Independent Mental Capacity Advocate (IMCA) must be appointed to do so as required by law (Mental Capacity Act 2005).
If you or another health care professional have discussed with the patient their preferences for end of life care, you must refer to these preferences. Of particular importance are any advance care plans, advance statements, advance decisions to refuse treatment or lasting powers of attorney. These will be addressed in more detail in section E.
The steps that you should take in reaching your decision, based on guidance provided by the General Medical Council’s Treatment and Care Towards the End of Life: Good Practice in Decision Making, are as follows:
1. Be clear which decisions about treatment and care have to be made.
2. Check the patient’s notes for any information about whether the patient has made a potentially legally binding advance statement or advance decision to refuse treatment or has appointed a lasting power of attorney. An advance care plan, made when the patient had capacity, is useful to guide clinicians on what the patient’s preferences may be and should be used to inform decisions regarding treatment that is in the patient’s best interests.
3. You should make enquiries of healthcare professionals and supporters to ascertain whether any of the above documents exist or if the patient has appointed a lasting power of attorney. The office of the public guardian keeps records of the latter. If so, you should bear in mind that the lasting power of attorney may not have the power to make decisions for all aspects of healthcare. If there is an appointed lasting power of attorney with the power to decide the matter at hand, you should explain all of the options to them as you would a patient with capacity. The surgeon can offer them support, but similarly cannot pressurise or coerce.
4. When no lasting power of attorney or advance decision exists, the responsibility for decision making rests with the doctor responsible for the patient’s care. You must consult an advance care plan or advance statement, if one has been made, and those close to the patient including other healthcare professionals to make your decision. You must not give others the impression that they are making the decision. Where possible seek affirmation from a consultant colleague. The decision that you make should be in the patient’s best interests and align with their personal preferences, wishes and beliefs and not your own.
5. If there is no lasting power of attorney, close relative or friend who is willing or able to represent the patient, then the surgeon must approach their employing or contracting organisation to appoint an Independent Mental Capacity Advocate (IMCA). An IMCA has the power to make enquiries on behalf of the patient and contribute to the decision by representing his or her best interests, but cannot make a decision on behalf of the patient.
The surgeon should be careful in these circumstances not to rely on their personal views about a patient’s quality of life and to avoid making non evidence-based and biased judgments.
As a surgeon you must ensure that your decisions are informed by your knowledge of the patient’s priorities, which can be drawn from an advance care plan, previous discussions between the patient and yourself or other healthcare professionals or from those relatives, friends and carers that understood the patient’s priorities and values.
All discussions that the surgeon has, including with patient’s supporters and other healthcare professionals, should be clearly and contemporaneously documented in the patient’s case notes.
After death, surgeons should ensure that the patient’s friends or relatives have the opportunity to ask questions, that they are provided with information on sources of support and the next steps they should take, for example, in registering the death. This will likely involve directing bereaved friends or relatives to the bereavement team.
Appendix 1 provides a checklist summarising the important steps that should be taken when decision making at the end of life.
The implications of surgery
Surgery near to the end of life can be appropriate either because it will provide palliation or if the patient’s priority is to prolong life at all cost. But as surgeons we have a duty to ensure that these decisions are well informed, based on realistic expectations of the course of the disease and take into account the limitations of the operation. Careful deliberation is required when considering invasive treatments that will directly impede the patient’s quality of life, but with no additional value to the patient.
Some serious illnesses and acute surgical conditions that put elderly patients at risk of non-beneficial surgery, which could also be relevant for those younger patients who are nearing the end of life and require extra consideration, have been highlighted in Appendix 2.
Surgeons have a duty to facilitate decision-making in patients with capacity, and to make decisions in the best interests of patients who lack capacity. As the expert, the surgeon should present information to the patient to inform their decision in an un-coercive, realistic and understandable manner, using professional interpreters where necessary. At the end of life, providing this information can be difficult for many reasons, including making assessments of the unknown at a time of high emotion. The instinct of the surgeon is often to operate even though surgery may not always be appropriate.
There is evidence that for patients at the end of life, avoidance of aggressive interventions is associated with less physical and psychological distress at the time of death. It is also important for surgeons to be aware that most high intensity treatments are not delivered in line with the patient’s personal goals for the end of life. Realistic discussion with patients about the likely outcomes, including a description of the likely functional impact, results in fewer patients undergoing aggressive medical interventions and more patients experiencing a death in line with their personal priorities.
Patients should be provided with an accurate picture of the likely outcome of any potential surgery with a focus on the functional states and quality of life, in addition to the expected survival rates and associated procedural risks. Surgeons should explain how the different options may align with the patient’s own priorities, using their own knowledge and experience and information from the literature. Where operations are associated with a stay in intensive care, surgeons should explain what this stay involves for the patient and for their functional outcomes afterwards in a realistic manner. Different options may be acceptable for different patients, depending on their priorities, but it is important that each patient is treated as an individual and facilitated to make decisions appropriate for them.
Guidance is based on: the General Medical Council’s Good Medical Practice; Treatment and Care Towards the End of Life: Good Practice In Decision Making; the Royal College of Surgeons of England’s Good Surgical Practice; and Consent: Supported Decision Making A Guide to Good Practice.