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End-of-life decisions and respiratory disease

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VOL: 102, ISSUE: 07, PAGE NO: 56

Samantha Prigmore, MSc, RGN, is respiratory nurse consultant, St George’s Healthcare NHS Trust, London. This article was written while she was studying for her MSc in cardiothoracic nursing at the Brompton Hospital and Imperial College, London

Practitioners providing care for patients with chronic respiratory conditions frequently have to decide whether treatment interventions are beneficial and when it is appropriate to withdraw treatment. The case study below (Box 1) is used as a means of demonstrating how these decisions can be addressed using an ethical framework (Beauchamp and Childress, 2001).

Background to ethics

The study of ethics is concerned with the meaning of words such as right, wrong, good, bad, ought, duty. The issue of morals also arises, and how people, individually or collectively, decide that certain actions are right or wrong and whether they ought to do something or whether they have a right to something. In the process, answers are formulated to questions, and these are used to guide actions. Ethical behaviour implies transparency, public accountability, and taking a stand for or against certain public issues (Tschudin, 2003). The goal of medical ethics is to improve patient care by identifying, analysing and attempting to resolve ethical problems that arise in clinical practice (Singer, 2000).

Two main ethical theories are used to explain moral issues: deontology and consequentialism (Box 2).

Ethical principles

To make ethical theories accessible and useful in practice, clear principles are needed (Tschudin, 2003). According to Beauchamp and Childress (2001) the most commonly used ethical principles are:

- Respect for autonomy - respecting the decision-making capacity of a person;

- Beneficence - providing benefits and balancing benefits against risks;

- Non-maleficence - avoiding the causation of harm;

- Justice - being fair in the distribution of benefits and risks.

These four principles can be used either alone or in combination by a healthcare professional to address an ethical problem.

Comments on the case study

The initial decision to treat Mrs Rose with non-invasive ventilation (NIV) was appropriate, and followed the British Thoracic Society (BTS) guidelines for the management of an acute exacerbation of COPD (BTS, 2004). (NIV involves the administration of ventilatory support through the patient’s upper airway using a mask or similar device, but avoiding intubation (BTS, 2002)).

Mrs Rose had hypercapnic respiratory failure secondary to COPD (acute on chronic respiratory failure) and there is limited evidence supporting the role of NIV in these circumstances (BTS, 2002). The BTS recommends that the decision to withdraw NIV should be considered on an individual basis and that the criteria should include:

- Failure to respond, with no improvement in arterial blood gases;

- Failure to alleviate symptoms;

- Patient and carer wish to withdraw treatment.

The decision to withdraw NIV from Mrs Rose was made on the basis that to continue would be futile. Medical futility can be described as being quantitative or qualitative. Quantitative futility is said to apply to circumstances when it is unlikely that the patient will benefit from an intervention. For instance, if physicians conclude that in a previous 100 similar cases the intervention has been useless, it should be regarded as being futile (Schneiderman et al, 1990). However, this premise does not take into account the needs of the patients currently receiving the intervention. Qualitative futility, on the other hand, applies to circumstances where the quality of the benefit of an intervention will be minimal (Tschudin, 2003).

To acknowledge that an intervention is futile is to make an assumption about quality and quantity of life and it has been argued that it is of limited practical use because it places such high demands on the individual who is responsible for decision-making (Bailey, 2004)

Respect for autonomy

Respect for people’s autonomy requires healthcare professionals to consult individuals and obtain informed consent before trying to help and care for them. It requires health professionals to give adequate information, find out what their patients need and be aware of the treatment outcomes.

Because it became clear from Mrs Rose’s blood gas analyses that she was not responding to treatment, it was necessary to discuss treatment options with her and her family. Mrs Rose had not openly discussed her views of end-of-life care before coming into hospital, and had not, therefore, drawn up an advanced directive. However, during the discussion about treatment options, Mrs Rose stated that she had ‘had enough’ and that she did not want further treatment.

The High Court has laid down a three-stage test for capacity (Shaw, 2002), which includes being able to comprehend and retain information, being able to believe it and having the ability to weigh up the information. Mrs Rose had the capacity to make an informed choice (Hayes, 2004), but her wishes were not acted on for a further three days, suggesting that her autonomy at this point had not been respected.

According to the British Medical Association (2001), a doctor making an omission with the primary intention of bringing about a patient’s death would be acting unlawfully, but it acknowledged that there are circumstances when omissions are lawful:

- The patient/agent/ parent/guardian refuses treatment;

- The treatment is futile;

- The treatment is not in the patient’s best interest.

The decision to withdraw care must be consistent with the European Convention on Human Rights. There are two competing rights within the Human Rights Acts (1998): the right to life (Article 2) and the right to protection from inhuman and degrading treatment (Article 3). It could be argued that, by continuing the NIV for an extra three days, Mrs Rose’s treatment could have breached Article 3, whereas if she had responded to the treatment it would have been inappropriate to withdraw it, breaching Article 2.

Beneficence and non-maleficence

Whenever we try to help others we are at risk of harming them (Gillon, 1994), therefore it is sensible to consider the principles of beneficence and non-maleficence together. Carrying out a health care intervention to an individual involves being clear about the risks and benefits of that intervention. In the case of Mrs Rose, there is evidence supporting NIV as being the treatment of choice (BTS, 2002), and that the ethical principle of beneficence - to do good - had initially been maintained. But although NIV is reasonably well tolerated, it does involve wearing a tight-fitting mask on the face, which can be claustrophobic (Simonds, 2001). While these side-effects can be offset against a positive response to treatment, in the case of Mrs Rose it could be deemed to be doing her more harm than good, equating to maleficence.

Mrs Rose had been admitted under a general medical team, who had complied with the national guidelines for the acute management of respiratory failure by starting NIV (BTS 2002), but the team failed to respond when the treatment was unsuccessful, which suggests that they lacked specialist knowledge. This has important implications for clinical governance, as the BTS recommends that patients requiring NIV be managed by respiratory teams or in an intensive care unit.

Achieving an appropriate balance between patient autonomy and professional beneficence can be difficult. However, patients are now often more informed about their health than in the past and about the potential treatment available, and should be involved in decision-making.


The meaning of justice is fairness. Gillon (1994) divides justice into three categories:

- Respect for people’s rights (rights-based justice;)

- Fair distribution of scarce resources (distributive rights);

- Respect for morally acceptable laws (legal rights).

Once Mrs Rose was aware that she was not responding to NIV she indicated that she did not want to continue with it. It could be suggested, therefore, that her rights were not respected, as the treatment continued for a further three days.

Distributive rights are concerned with limited health care resources, equal access to health care and allowing people choice in health care. In a publicly funded health care system, however, rationing of resources can influence clinical decisions. For example, although it is recommended that NIV services be provided in every acute trust because the procedure reduces mortality in patients with acute exacerbations of COPD (NHS Modernisation Agency, 2002), in practice there are only a limited number of NIV machines and specialist respiratory beds.


Mrs Rose’s treatment may have been different if she had been given the opportunity to discuss the options available to her before an acute exacerbation of her condition. Most patients expect physicians to initiate end-of-life discussions (Layson et al, 1994; Heffner et al, 1996), although the timing of these discussions can be difficult. Curtis et al (2002) revealed that patients with COPD wanted to be aware of what dying might be like and wanted to be involved in advanced care planning.

Simonds (2004) reports that there is little research on patients’ perspective of end-of-life care, and that what is available is based mostly on patients with cancer in hospices. It is difficult to predict and estimate life expectancy in patients with COPD, as most experience a slow deterioration in lung function and functional ability. It is only when they have an acute exacerbation that their prognosis becomes poor. Physicians are reasonably good at estimating survival in patients with mild to moderate COPD, but are less likely to be accurate in estimating whether those at the more severe end of the COPD spectrum will survive or not (Lynn et al, 2000).

A study by Gore et al (2000) which compared health status, activities of daily living and levels of anxiety and depression in patients with COPD and in those with lung cancer, revealed that those with COPD scored higher in all three areas. Despite these findings, access to palliative care services for patients with COPD is still very limited. Claessens et al (2000) found that despite their views and wishes on end-of-life management, patients with COPD were three times more likely than patients with lung cancer to be treated aggressively than by palliation, highlighting the lack of time allocated to discussing end-of-life care with patients with end-stage respiratory disease. It is clear that what worries patients with COPD is a lack of autonomy over the circumstances in which they will die, in particular powerlessness over decisions about medical treatments, including those that may prolong life. Clark (2003) suggests that the fear of death is being replaced by the fear of dying.

The management of end-stage respiratory disease can often be fragmented. A better outcome could be achieved by placing the focus on symptom relief, patient education about chronic conditions, and involving patients and families in decision-making (Simonds, 2004).

Health professionals caring for patients with end-stage respiratory disease need to inform patients of the course of their disease, its evolving management and why some treatments may be of value and some may not. Patients also need to know how they will be supported both physically and emotionally throughout the course of their illness. This information can be given over a period of time, so allowing respect and trust to develop.


Nurses caring for people with COPD are in an ideal position to help patients make end-of-life decisions that also involve their family and carers and the multidisciplinary team.

Moran and Pouya (2004) highlight that the challenge of health care providers is to balance compassionate and appropriate care with respect for patients’ choices while safeguarding professional standards and ethical integrity. Ethical principles cannot be used as straightforward guides for making clinical decisions but form a framework for discussing ethical issues.

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