Ethical dilemmas in palliative care

The sanctity of life

‘All human life has worth’ and to end a life directly or indirectly is wrong, regardless of any perception about the ‘quality of life’. Adherence to this doctrine is clearly not compatible with modern medical practice or thought. Medical ethics can offer a framework to address these challenges (Chernyl, 2014).

The principle of emancipation

It has been argued that there exists within palliative medicine a ‘principle of emancipation’:

(One should) spare no scientific or clinical effort to free dying persons from twisting and racking pain that invades, dominates, and shrivels their consciousness, that leaves them no psychic or mental space for the things they want to think and say and do before they die.

The action-omission distinction

The action-omission distinction highlights the difference between acting to end life and refraining from an action that may save life (failure to act). It is always morally wrong to knowingly administer a lethal injection, but withholding treatment in some circumstances may have similarly lethal effects. It might be permissible to withhold or withdraw treatment when a proposed course of treatment is so burdensome that it may not be in the patient’s best interests to continue with the treatment.

The doctrine of double effect

Drugs administered in terminal care to alleviate symptoms will often have unwanted side effects and may shorten life. The doctrine of double effect concentrates on the intention of the action. This states that it is morally wrong to administer a drug with the express intention of bringing about a patient’s death. However, it may be acceptable to administer drugs with the intention of relieving suffering, even when by so doing life is shortened. Such ‘double effects’ can raise moral questions and pose dilemmas in palliative care.

Respect for autonomy

Respect for autonomy acknowledges the sovereignty of the patient in making decisions about their treatment. Terminally ill patients will make contemporaneous decisions about their care and discuss advance care plans.

However, patients do not have autonomy that allows them to instruct a physician to administer a lethal injection. Furthermore, case law makes clear that a patient may not demand treatment that a physician deems to be burdensome/futile or not in the best interests of the patient. The decision to treat remains that of the physician in collaboration with the patient. Patients demanding harmful treatment will come into conflict with other ethical principles, such as the duty not to harm (non-maleficence).

Patients are encouraged to understand and articulate their future care needs and wishes. Advance care planning empowers patients to make decisions about their end of life, and this may include decisions to refuse treatment. A competent patient can refuse treatment; including requesting that ongoing treatment is withdrawn, even if that results in the patient’s death.

Non-maleficence (the duty not to harm)

It is important to remember that many treatments have unintended, yet harmful, side effects, but may ultimately improve life. Therefore the degree of ‘harm’ or burden will need to be defined, as will the concept of whether death is an acceptable ‘harm’.

Beneficence (the duty to act in patients’ best interests)

This duty states simply that we should always act in a way that brings net benefit to the patient. This concept becomes increasingly difficult, as the burden of a treatment is not always easy to define. However, if a treatment is very burdensome, continuation may not be in the patients’ best interest.

Justice

Justice refers to a fair and just allocation of resources. It is particularly relevant to consider when patients seek support for expensive treatments. How to balance competing interests may be helped by applying ethical principles.

Talking to patients about end of life care

Oncologists report that one of the most challenging aspects of their day-to-day work is the sifting and channelling of emotionally charged news to patients and their families (Back, Arnold, Baile, Tulsky, & Fryer-Edwards, 2005). Cultural and family preferences profoundly affect an individual’s decision-making. The way patients receive news profoundly affects subsequent treatment decisions and their emotional wellbeing (Back et al., 2005; Back et al., 2008).

It is well-recognised that being honest and truthful with terminally ill patients can be very demanding. It is important to build a trusting relationship with patients and their families, to break down collusive barriers, and to communicate effectively and honestly about the concept of a good death. It may be necessary to help resolve conflicting views within the family. Advance care planning is paramount in ascertaining a patient’s wishes and reducing conflict and differences of opinion within families.

The principle of clinical equipoise is important. A doctor’s responsibility is to inform and advise patients, but doctors’ attitudes and values will alter how information is presented. This, in turn, can affect interventions or treatment decisions. Self-awareness and clinical reflection are important to understanding the impact of one’s own values and attitudes.

It is important to understand patients’ decisions and explore and explain the consequences of decisions. Treatment options should be effectively communicated to patients and their families. Patients should be reminded, when appropriate, that decisions can be changed.

The epidemiology of refractory symptoms

Optimal palliative care can relieve the symptoms of most patients with advanced cancer and non-malignant disease. It is important to remember that symptoms towards the end of life are not mediated just by physiological mechanisms. Psychological, spiritual and social factors may all affect the perception of symptoms. Symptoms are likely to increase towards the end of life (Conill et al., 1997; Lichter & Hunt, 1990; Storey, 1994).

Pain, dyspnoea and agitated delirium are some of the commonest symptoms. The prevalence of refractory symptoms varies from 10–50% with an estimated median of 20–30% (Fainsinger, Landman, Hoskings, & Bruera, 1998; Fainsinger, Miller, Bruera, Hanson, & Maceachern, 1991; Johanson,1991; Morita, Inoue, & Chihara, 1996; Stone, Phillips, Spruyt, & Waight, 1997; Ventafridda, Ripamonti, De Conno, Tamburini, & Cassileth, 1990). For most patients approaching the end of life, a state of conscious sedation is achievable, in which the patient can wake sufficiently to respond to verbal stimuli. Conscious sedation is the aim of sedation in palliative care and the induction of ‘unconscious sedation’ should be considered a measure of last resort.

The ethics of palliative sedation

Palliative sedation may be defined as the monitored use of medications to relieve refractory symptoms by inducing varying degrees of unconsciousness, in patients expected to die within hours or days. In 2012, a systematic review of sedation in palliative care found no statistical difference in survival time between patients receiving palliative sedation and those not receiving palliative sedation (Maltoni et al., 2012).

Careful assessment is essential to rule out reversible causes for agitation (e.g. urinary retention, bowel obstruction, infection or metabolic disturbance). If palliative sedation is being considered, a review with the multidisciplinary team, if possible, is recommended to ensure all reasonable alternative interventions have been exhausted.

Palliative sedation remains distinct from euthanasia by application of the principles discussed and summarised in Box 1.

OPEN IN VIEWER

Box 1

Palliative sedation.

• Intention: The intent is to relieve suffering and not to hasten death

• Proportionality: The intervention is proportionate to the prevailing symptom

• Outcome: The outcome is measured by relief of suffering and not by the death of the patient

• Artificial nutrition and hydration: Artificial nutrition and hydration do not necessarily need to be withdrawn during the process of palliative sedation

Decisions to withhold and withdraw life-prolonging treatment

Towards the end of life, decisions may need to be made for patients who no longer retain the mental capacity to make decisions about their treatment. In this situation a ‘best interests’ decision will need to be made. The Mental Capacity Act 2005 contains a ‘best interests’ checklist to guide decision-making for patients who lack capacity. In essence: reasonable attempts should be made to seek the views of family and carers. These views should incorporate information about the patient’s previously held beliefs and wishes, views and values. If a carer has a Lasting Power of Attorney the views of this carer should be sought. The process of information gathering and sharing does not imply that family or carers should make a decision on behalf of the patient.

If there is a difference of opinion about treatment, the Court of Protection may be consulted for guidance. The court may appoint a deputy (court-appointed deputy) to make decisions on behalf of a patient lacking capacity. Where no family member, friend or carer is available a patient may require an Independent Mental Capacity Advocate (IMCA) to represent the views of the patient. When making treatment decisions, the key factor is an assessment of the perceived benefits and likely burdens of a course of treatment. Criteria for ‘best interests’ decisions are the same for children and adults alike, and include the ‘ability to interact and the capacity for self-directed action’ and whether there will be ‘suffering of severe unavoidable pain and distress’. The General Medical Council (GMC) has a very useful decision-making model for incapacitous patients (GMC, 2010).

The demand for competing resources

Relief from suffering and access to effective palliative medicine at the end of life has been defined as a human right. Pain is one of the dominant symptoms for patients with both malignant and non-malignant disease alike (Myers & Shetty, 2008). A patient experiencing pain is likely to be withdrawn, depressed, fearful and agitated. A ‘bad death’ with intractable symptoms will live on in the minds of those left behind. It has been argued that pain (and symptom control) remains a core ethical duty in medicine (Mohanti, 2009). There is still a lack of knowledge about the successful assessment and remediation of pain and complex symptoms. Primary care professionals need the skills and resources to provide the best palliative care.