CARE AT THE END OF LIFE: A guide to best practice, discussion and decision-making in and around critical care

Published 22/10/2021

CHAPTER 1: Twenty First Century Critical Care: Success and Dilemma, Intertwined

Health care professionals within critical care medicine have a duty to recognise when patients are close to death, and to change the focus of care towards comfort at the end of life. However, the evolution of new technologies has meant that critical care teams are faced with continual dilemmas as to whether or not withdrawal and withholding of life-sustaining treatment is depriving a patient of potentially beneficial interventions. This section provides an overview of the development of critical care and legal concepts relating to debates surrounding continuation of treatments or withholding and withdrawing treatments.

Key Points

  • Critical care mortality rates for adults have progressively reduced since the 1970s.
  • Medical and scientific advances have raised societal expectations with respect to treatment delivery and longevity of life.
  • Despite reductions in mortality rates, 15-20% of patients admitted to critical care die before leaving hospital. Critical care teams therefore continue to have a duty to engage in the provision of end-of-life care.
  • For patients who have no realistic chance of surviving critical illness and returning to a life they can value, the physical and psychological burdens of invasive and distressing treatments may outweigh potential benefits.
  • Outcomes from critical illness are not only measured in terms of survival but also in terms of patient preferences surrounding quality of life.
  • ICU teams require a working knowledge of legal and ethical frameworks that discuss the relative benefits and burdens of treatments.

Recommendations

  • Critical care teams must recognise patients as individuals.
  • Critical care teams should be empathic in their communications to patients and families. If there is significant chance of patients dying, they must be honest in their communications and convey the concept of uncertainty.
  • Critical care teams should be aware of the importance of a good death.
  • Critical care teams should have an understanding of legislation relating to capacity, consent and end-of-life care
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1.1: Context

The General Medical Council’s Duties of a Doctor notes that clinicians must recognise when a patient is dying. Such decisions are inevitably some of the most challenging faced by health care teams (General Medical, 2018). This section summarises current ethical and legal principles and outlines debates relating to inappropriate or disproportionate treatments.

The primary purpose of critical care is to support patients with (sometimes immediately) life-threatening conditions through treatments enabling survival (Great Britain. Department of Health, 2000). Decision-making is frequently complex and may be emotionally distressing. Nevertheless, it is a central role for critical care teams. Being honest about uncertainty, utilising collaborative decision-making and clarity of communication are paramount. Failure to act in this manner can compound misunderstandings and fuel conflict. Understanding debates surrounding concepts of inappropriate treatment and clear communications can significantly improve the delivery of care (Kon et al., 2016). It can also enable decisions to be held up to scrutiny by family members, peers, public bodies and the law.

1.2: What is Care Designed to Achieve? Inappropriate or Disproportionate Treatments

Debate here balances the potential benefits of critical care against its burdens (Schellongowski et al., 2016). Inappropriate treatments are treatments that do not achieve their intended purpose. The debate therefore involves analysing both quantitative outcome measures and qualitative aspects of patients’ values reflecting physical and holistic aspects of care i.e. some treatments may be physiologically successful, but inappropriate or disproportionate as they fail to provide qualitative benefits.

Quantitative factors include assessing physiological impact of treatments and whether they offer any reasonable chance of survival. This involves collating clinical assessments, investigations and prognostic indices e.g. ICNARC, APACHE II. The scores offer a predictive value for mortality but relate to populations and should not be used as absolute guides in the context of individual patients. Doubt can lead to further discussion and the possibility of trials of treatment within specific, agreed, realistic timescales e.g. change of antibiotics with a 48-72 hour review, or a trial period of non-invasive ventilation. These are often referred to as trials of critical care (Lecuyer et al., 2007).

Qualitative/holistic aspects of care involve asking the questions “Do proposed treatments offer a minimum quality of life acceptable to the patient?”, "What are the patient’s values?” and “Can proposed treatments achieve a patient’s goals for a good life?” Ideally these issues should be discussed (and documented) with competent patients before any acute illness, however this rarely occurs and cannot usually be discussed in acute situations. Where this is not possible, consultation from patients’ nominated family members, admitting teams and critical care staff can enable details of a care plan to evolve via a Best Interests process e.g. as outlined in legislation such as the Mental Capacity Act 2005 in England and Wales, and the Mental Capacity Act (Northern Ireland) 2016 (Chapter 5.) In Scotland there is the Adults with Incapacity (Scotland) Act 2000; such discussions lead decisions that consider therapies that will benefit patients and cannot be achieved by other ways. They must consider what actions will be the least-restrictive for patients. Regardless of which legislature teams are working in, a consistent approach with effective and honest 11 communications can minimise confusion, conflict and complaints. A working knowledge of ethics and relevant law is therefore a major factor in this process.

These considerations are based on an understanding and ability to explain the concept of Serious Medical Treatments i.e. treatments where there is a fine balance between benefits, risks and burdens, principles of medical ethics, and how law relevant to consent and capacity is shaped. They also include concepts such as Advance Care Planning (ACP), Treatment Escalation Plans (TEPs), Emergency Health Care Plans (EHCP) and Advanced Decisions to Refuse Treatment (ADRT). Central to the process are shared decision making, Best-Interests’ decisions and clarity of communication (Northern Cancer Alliance, 2018; Obolensky et al., 2010).

In law, patients may refuse but do not have the right to demand treatments. For patients who have capacity to make decisions about their own care, healthcare professionals must provide them with sufficient information to make an informed decision about proposed treatments. In patients who have lost decision-making capacity, healthcare professionals have a duty to seek out and take their views into account when considering planning of care. The provision of end-of-life care can be guided by articles from the European Convention on Human Rights:

  • Article 2: with the exception of the prevention of criminal acts or lawful use of the death penalty, everyone’s right to life shall be protected
  • Article 3: no one shall be subjected to torture or inhuman or degrading treatment or punishment
  • Article 8: with respect to an individual within the norms of a democratic society an organisation cannot interfere with their rights unless it is to uphold the law or protect the rights and freedoms of others

The articles guide debate case by case, e.g. Article 2 (The Right to Life) can present an argument for continuation of life-sustaining treatments. If a patient is dying there could be concerns about the potential for life-prolonging treatments becoming “inhuman and degrading” (Article 3.) Whilst rulings have referred to the sanctity of life, this principle is not absolute and planning for a “good death” may provide the final part of a fulfilling, complete life. In cultural and religious contexts where death is regarded as a step towards the “afterlife” or reincarnation, a natural death may honour individuals’ rights and freedoms (Article 9.) Effective care therefore requires an understanding of these issues and an ability to explain them in discussions, adding clarity to planned care and minimising conflict ("Aintree v James," 2013; "Glass v UK, EHCR - 61827/00," 2004).

Observation, information gathering (physiological and qualitative) with frequent multi-disciplinary communication should enable improved person-centred decision-making around the potential for inappropriate treatments (Chapter 4.) Regular open and unambiguous discussions (with all parties) can build understandings of patients’ progress and prognoses. Wherever possible people should be given time to gain an understanding of processes with relevant information and discussion, taking into account patients’ and families’ cultural, religious and language needs (Marie Curie, 2019) (Public Health England London, 2016)

1.4: Summary

Modern critical care has made significant inroads into the survival of patients, however interventions required to save life can also be physically and psychologically harmful. Consequently, there is potential for dilemma and conflict if survival is uncertain. In order to be effective, critical care teams must (in addition to managing organ support) be able to appreciate the concept of inappropriate and/or disproportionate treatments administered to the dying.

Chapter 1: Further Reading