#end of life care issues
Ethical and legal issues in end-of-life care
Doctors are required to develop the skills to manage end-of-life decision making
Choice, though a popular approach, should be distinguished from autonomous decision making
Truth telling and effective communication skills are central to respecting a patient’s autonomy
Decisions should be applied only to that individual. There is no place for a blanket approach or for tradition to replace clinical decision making
The use of opioids and sedatives in end-of-life care should rarely require the justification of the doctrine of double effect. Any doctor feeling the need to employ this doctrine to justify their action should contact specialist palliative care services for advice
Doctors are all too often under the public spotlight for the ethical and legal dilemmas they face in end-of-life care. The demands on the doctor (Table 1 ) are to:
keep up-to-date with changes in legislation
steer the best moral path through the political rhetoric
develop the skills necessary to manage these situations effectively.
Approaches to decision making at the end of life
Principles and decision-making framework
A person’s right to self determination is the starting point to many ethical dilemmas. Respecting autonomy has limits, brought into focus by the Mental Capacity Act 2005 1 and the increased emphasis on patient choice. The doctor needs to recognise these limits, being mindful of the other responsibilities: to benefit and not harm the patient, and to use resources justly.
Truth telling is fundamental to respecting autonomy. Most patients wish to have full information, although this may decrease as they approach the end of their lives. 2. 3 A doctor should have the skills to identify the patient’s preferences and give the information honestly yet sensitively. Paternalistic withholding of a life-threatening diagnosis from a patient has no place in current healthcare, unless this is the patient’s informed preference or they lack capacity to understand and use the information.
Prognosis, potential complications and future progression of disease will often remain uncertain. The clinician cannot provide clarity for all these issues but, through discussion with the patient and their families, can work with them to manage these uncertainties.
Respect for autonomy and choice
Respecting autonomy does not equate to choice. To ask ‘Would you like to die at home?’ offers choice. To explain all the implications of such a decision, ensuring the patient has capacity and has appreciated all the important consequences, demonstrates respect for autonomy. 4 The doctor has a responsibility to ensure decisions are based on autonomous action, requiring full information, freedom from coercion and with the necessary capacity rather than simple choice. With choice being such a popular drive behind healthcare policy today, this distinction is key in end-of-life decision making.
Specific challenges in end-of-life care
Withholding and withdrawing treatment
Ethical dilemmas approaching the end of life commonly revolve around decisions to withhold or withdraw interventions or treatment. 5 When the patient and doctor agree there is no benefit in carrying on or starting a new intervention the right action is clear, though skill is required on the doctor’s part to manage these discussions sensitively.
Respecting the autonomy of a patient who is requesting to continue or initiate a treatment needs to be challenged when it would result in overwhelming harm, an unnecessary and unequal distribution of resources or an action that requires the doctor to act against a professional code or the law. The legal position is clear that a patient cannot demand a treatment that is not in their best interests and that doctors need not strive to preserve life at all costs. However, when there is doubt the presumption must be in favour of preserving life. 6. 7
The doctor may be justified in withholding or withdrawing an intervention which as a result allows death to occur in the following situations:
it is the patient’s autonomous decision to withhold consent for a life-saving intervention
the harms of a treatment outweigh any potential lengthening of life
the potential treatment is ‘futile’ – it will not achieve its specified aim (although, strictly speaking, a truly futile treatment would not, by definition, influence outcomes).
Ethical approach to such decisions. All doctors should be able to describe an ethical approach to decisions to withhold or withdraw therapy that takes into consideration the law, guidance from official bodies, the evidence base and the resources available. They must be aware of the patient, their capacity, beliefs and preferences as well as their clinical condition and outlook. The doctor must then formulate clearly the ethical question being asked, ensuring that their own perspective is not influencing the way it is put. This enables the options available to be established, including the moral justifications and practical solutions (Table 2 ). Skills in communication and coordination are required to put this into practice. This approach will now be applied to common end-of-life decisions.
A layered approach to decision making when withholding or withdrawing treatment and interventions.
Clinically assisted nutrition and hydration
The provision of hydration and nutrition is an essential part of human flourishing. Families and professionals struggle with any thought of withdrawing clinically assisted hydration and nutrition up to and including the last hours or days of life. When nutrition and hydration become clinically assisted they are classed as a treatment rather than basic care. Therefore, when they cease to offer overall benefit, they can be withdrawn. 6. 7
Recent systematic reviews highlight the lack of robust evidence to support decision making in these areas. 8. 9 Traditional thinking in palliative care has held that the harms from providing clinically assisted hydration and nutrition in the last days or hours of life outweigh any benefits. The patient is not dying from a lack of hydration, but is dying and so does not require it. 10. 11
Attempts at cardiopulmonary resuscitation (CPR) are unlikely to be successful in restarting the heart as patients approach the end of their lives or, if they are, may result in a short period of significantly impaired quality of life. 12. 13 Agreement should be reached among the multidisciplinary team that this is the situation and a decision carefully recorded. 14
Morally, there are few arguments that favour attempting CPR in the last days or weeks of life. There are significantly more practical challenges, especially with regard to the unrealistic expectations of both public and professionals.
When CPR is considered a futile intervention, to discuss it with the patient would appear only to bring unnecessary distress. Discussion is, however, required about the patient’s understanding of their general situation and outlook. An explanation that they are now dying may make further discussion about CPR itself irrelevant. A chance to air fears or concerns and make plans for their death would seem far more useful discussions to have, but the needs of patients who want to know more detail should also be met. For patients dying at home it is likely that more explicit discussion of CPR is required for them and their relatives to ensure emergency services are not called inappropriately.
Decisions not to attempt CPR refer only to CPR and should not influence other areas of decision making. Each potential intervention may be considered on its own merit as part of advance care planning.
Double effect and the use of opioids and sedation
Opioids and sedatives provide effective relief for the frequently distressing symptoms of pain, dyspnoea and agitation as the end of life approaches. The frequent misconception among professionals is that the life of the patient may be shortened by increasing doses of these drugs in line with accepted clinical practice – a belief often shared by patients and their families. The doctrine of double effect (DDE) provides justification for such a consequence, but raises concern that it may protect dangerous practice.
The DDE states that an action (such as an increase in opioid dose) that the professional foresees may shorten life – but does not intend to have that result – is justified provided that the intention is to benefit the patient and not shorten their life. In the classic interpretation, a patient is in pain, a higher dose of opioid is given to relieve that pain, but at the same time in the belief that this may shorten life. This traditional argument has come under increasing challenge (Tables 3 and 4 ). 15 – 17 Opioids and sedatives when used in line with best practice rarely require such high doses as to risk shortening life.
Association for Palliative Medicine (APM) position on the doctrine of double effect in end-of-life care.