Intensive Care: Decision-Making for the Critically Ill
“The success of intensive care is not, therefore, to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored; and by the quality of the dying of those in whose interest it is to die; and by the quality of human relationships involved in each death.” – G.R Dunstan,1 University of London, 1984
“When and how does an intensive care doctor stop treatment on a critically ill patient who they do in not think is going to survive?” “How should medical teams manage situations where the family and the treating team have different expectations about what is realistic or achievable in a critically ill patient?” “What is in the patient’s best interests when there is uncertainty about the medical outcome?”
These are the sorts of questions that intensive care clinicians face every day in every ICU in Australia and New Zealand. Knowing the variation in practice, the stress that intensive care clinicians and families experience in managing care and decision-making at the end of life, the Australian and New Zealand Intensive Care Society (ANZICS) decided to undertake a major review of a guiding documents previously known as the “ANZICS Statement on Withholding and Withdrawing Treatment”, first written in 2003. As the leading advocate on all intensive care related matters, ANZICS had the interest, the imprimatur and the expertise to prepare such a statement which was published in October 2014 (ANZICS Statement on Care and Decision- Making at the End of Life for the Critically Ill). Although preliminary work was commenced by a small group of intensivists in 2010 and 2011, in 2012 the ANZICS Board asked the ANZICS Death and Organ Donation Committee (DODC) to form a subcommittee. The ANZICS End of Life Care Working Group prepared a document which reflected and supported current practice in the care of critically ill patients at the end of life in Australia and New Zealand.
During the consultation period in 2014, the draft statement received broad support from ANZICS members and external groups including learned colleges and the Australian Commission for Safety and Quality in Health Care. It provides considerable detail on the relevant ethical principles and the legal framework and it delivers practical guidance on advance care planning, consensus building, communication and language, managing conflict and the delivery of palliative care in the ICU. Apart from general advice on good clinical practice, there is specific advice pertaining to the care of infants and children, along with consideration of a number of other special circumstances. Clinical case examples are used throughout to illustrate important points and to stimulate consideration and discussion.
The Statement has been written at a time of major change in medical practice. Although many medical advances have improved survival, this has been accompanied by a growing population of patients with chronic debilitating disease where such medical advances have limited benefits but carry significant burdens and distress. Recognising our mortality, the importance of a good death and aligning medical treatments with the wishes of the patient regarding an acceptable outcome, are increasingly important priorities for the public and health professionals.
The guidance provided is based around 10 principles of care and decision-making at the end of life for the critically ill. The principles are quoted below, accompanied by short commentary.
- “The goals of intensive care are to return patients to a quality of survival that is acceptable to them and to reduce disability and, if these are not possible, to compassionately support the dying process. At all times the aim is to minimise suffering. “These goals align with good medical practice, espoused by the Medical Board of Australia, the Australian Medical Council and the Medical Council of New Zealand. These codes reflect caring for and respecting patients, working in partnership with colleagues, patients and their family, acting honestly and ethically to deliver high standards of care.
- “Intensive care treatment is often lifesaving for patients with reversible critical illness. As predicting survival of an individual critically ill patient is imprecise, however, all patients should receive simultaneous attention to both therapeutic (and potentially burdensome) medical interventions and to ensuring their comfort and controlling distressing symptoms. The balance of attention may shift between these objectives during the patient’s critical illness, including the possibility that the only objective may be patient comfort and symptom control.”Admission to intensive care is usually reserved for patients with reversible disease whose outcome may be improved by the technology and human resources available in ICUs. Other reasons for ICU admission may include a time-limited trial of ICU treatment when the degree of reversibility is unknown, difficult symptom management (including palliative care), addressing family issues and consideration of organ donation.Is the likely outcome acceptable to the patient? When do the burdens of treatment begin to outweigh the benefits? The answers to such questions must involve the patient and the family.
Discussion should include what are achievable goals and time limits and if and when to acknowledge the patient is dying.
- “When a decision has been made that active treatment is to be withheld or withdrawn, a palliative care plan should be implemented, in consultation with the patient and/or family and the ICU nurse, with a focus on dignity and comfort, considering physical, psychosocial and spiritual needs. The use of medication for patient symptom control in this setting is ethically and legally appropriate, even though this may shorten life.”Dying is individual for every patient and family. The palliative care plan, therefore, should be tailored to the needs of each patient and family, including emotional and practical support for the patient (if conscious) and the family, including children and is best delivered by a team: doctors, nurses, social workers, pastoral or spiritual leaders.
It is ideal to anticipate distress caused by withdrawal of respiratory support by pre-emptively administering sedation and analgesia and considering the staged removal of respiratory support. Given that some patients may survive despite the withholding or withdrawing of treatment, medication should be only administered with the intent of relieving distress, not hastening death.
- “There is no ethical or legal obligation to provide treatments where considered medical opinion is that the burdens to the patient outweigh any potential benefits. The substitute decision-maker does not have the right to demand treatment (except in Queensland). Medical consensus should be achieved between the intensive care and other medical teams before changing the goals of treatment.”
Withholding and withdrawal of life-sustaining treatment is considered lawful and ethically appropriate where there is a valid refusal by the patient or where it is in the patient’s best interests. The only exception to this is Queensland where consent must be obtained from the substitute decision-maker.
- “The adult patient who has the capacity to decide is entitled to refuse or withdraw consent for any treatment at any time, even if this may shorten his or her life. “
The law that relates to end-of-life care (as for other areas of medical practice) tends to emphasise the principle of autonomy. Autonomy is important given that the patient’s perception of their best interests may diff er from that of their healthcare professionals. Patients will not always want treatment that health professionals believe is in their best interests. A patient with the capacity to decide, however, has the right to choose from, or refuse, the treatments that are on off er, even if that refusal places their lives in jeopardy.
- “Medical staff and their patients should aim to make a shared decision about treatment options. The process of shared decision-making involves a consensus among the patient (if the patient has the capacity to make decisions), a substitute decision maker or family (if the patient does not have the capacity to decide), the intensive care team and other medical teams involved. Under shared decision-making, the responsibilities of the parties involved are as follows. It is the responsibility of the intensivist to:
Determine what treatment options are clinically indicated
- Determine the existence of an Advance Care Plan or Advance Care Directive if present
- Inform the patient (or substitute decision-maker in the case of a patient who lacks capacity) of the nature (including potential burdens and benefits) of these options and to provide professional recommendations about these options.
It is the responsibility of the patient with capacity to:
- Inform the intensivist of what further information they require about the treatment options available in order to be involved in the decision-making.
It is the responsibility of the substitute decision-maker of the patient who lacks capacity to:
- Inform the intensivist of the patient’s (and their own) goals, values and preferences that will inform decision-making.
It is a shared responsibility of the intensivist, patient or substitute decision-maker to:
- Use their shared understanding of the patient’s goals, values and preferences, as well as the potential burdens and benefits of the clinically indicated treatment options, to make a decision about what treatments should take place. The goal is to reach a shared decision that reflects the best understanding of the patient’s prognosis and of the patient’s wishes in the current clinical circumstances.”
A patient’s best interests are best served by considering the ethical principles of beneficence (act to benefit the patient), non-maleficence (avoid harming the patient) and autonomy (the patient’s right to know and to make decisions about their own healthcare), cognisant of the patient’s wishes, values and goals, given the clinical circumstance.
Intensivists have the knowledge of the patient’s illness, of what is potentially achievable with treatment, and of the burdens of the illness and the treatment options. In considering what is in the patient’s best interests they should take account of the patient’s previously expressed wishes (including an advance care directive), the views of the legal substitute decisionmaker( s) and the family. If time-critical decisions are required and the patient’s best interests are not known, it may be appropriate to institute life-prolonging treatment until the required information is available.
- In cases when there is disagreement that cannot be resolved with discussion and time, consideration may be given to involving additional medical opinion, non-medical professional opinion (elders, clerics or spiritual advisers), clinical ethics consultation or legal processes.
Disagreement is best pre-empted by achieving consensus - an opinion or decision reached by a group as a whole, where that decision can be supported by all members of the group even if it is not the most preferred opinion or position of each individual. A decision reached through the consensus of all interested parties is more likely to be a well-considered and appropriate decision and less likely to be subject to complaints or legal review. Consensus about the appropriateness of treatment should be achieved between the ICU team and other medical teams before it is sought with the patient, family and substitute decision-makers.
- All decisions regarding the withdrawing or withholding of treatment should be documented in the clinical record. The documentation should include the basis for the decision, identify those with whom it has been agreed and specify the treatments to be withheld or withdrawn.
The principles set out above apply equally whether withholding or withdrawing treatment is being considered.
- Every intensive care unit (ICU) and its hospital should develop and implement guidelines in accordance with these principles. This should include the evaluation of care at the end of life as a quality measure.
The ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill is intended to provide a framework for best practice in respect of the care of critically ill patients at the end of life in Australia and New Zealand and to provide strong support to intensive care staff involved in the care of these patients and their families. The Statement is published electronically on the ANZICS website in order to facilitate keeping the Statement up to date (www.anzics.com.au ). ANZICS continues to actively seek ways to further publicise the Statement. It has featured in numerous podcasts and been sent to the health departments in each Australian state and territory.
A/Prof. William Silvester
Chair, ANZICS Death & Organ Donation Committee
Assoc/Prof William Silvester is Director, Respecting Patient Choices Program, an ICU specialist; a medical consultant for DonateLife Victoria, President of the International Society of Advance Care Planning and End-of-Life Care, Chair of the ANZICS Death & Organ Donation Committee and End-of-Life Care Working Group, Chair of the Royal Australasian College of Physicians End-of-Life Working Party and Chair of the Commonwealth $15M Decision Assist Project delivering advance care planning and palliative care to aged care and GPs nationally.
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