Intensive Care and the End of Life

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Chapter 39 Intensive Care and the End of Life

Death remains a common event in the intensive care unit (ICU) and there are often shortcomings in the endof-life care that dying patients and their families receive.1 Any critically ill patient may die, although the extent of this risk varies enormously among individuals. Recognizing and accepting the possibility that a patient may die should prompt every involved clinician to ensure that every patient and every patient’s family receive good end-of-life care—from the time of ICU admission and while potentially lifesaving therapies are being applied.2

Although the beneficial components of good end-of-life care in the ICU have yet to be well defined, commonly stressed themes include good communication, control of distressing symptoms, continuity of care, attention to emotional and spiritual needs, “evident compassion,” and ensuring family access to the dying patient.

OVERVIEW OF CLINICAL PRACTICE

Because of inherent uncertainty about an individual patient’s outcome, patients are usually treated aggressively at the beginning of their ICU stays. Most cardiac surgery patients make rapid progress and leave the ICU alive within a few days. However, approximately 2% of them deteriorate and die despite continued intensive therapies,3 whereas a somewhat larger group develop multiple organ failure or signs of severe brain damage. Brain death is rare after cardiac surgery and usually occurs in the context of a large cerebral hemorrhage or hemispheric infarct.

Patients who deteriorate rapidly despite treatment (e.g., with cardiogenic shock after myocardial infarction or progressive intracranial hypertension resulting from intracranial hematoma or cerebral infarction) very rarely receive cardiopulmonary resuscitation. Some treatments may be limited or withdrawn shortly before death because rapid inexorable decline should be evident to everyone, and such treatment limitations are usually readily accepted when the nature of the illness is carefully explained to the family. Decision making about limitation or withdrawal of intensive therapies is more problematic in patients in whom persistent multiple organ failure develops and in those who do not become brain dead but have very severe brain damage, usually caused by hypoxic-ischemic insults or stroke.

RECOMMENDED CLINICAL PRACTICE

It is not uncommon for staff in ICUs to overly attend to an objective of cure or recovery. If the objective of comfort and relief of suffering is simultaneously and explicitly attended to from the moment of admission, there are far fewer difficulties for all concerned in the processes of withholding or withdrawing certain treatments should such actions become appropriate. Attending to the objectives of both cure and comfort at all times acknowledges that the relative priority of these objectives may shift during the course of the patient’s illness.

Failing to attend to comfort and focusing only on cure can potentially impede the acknowledgment by doctors and by the patient and family of the increasingly evident failure of the cure objective. Many other aspects of care (including attention to the psychological and spiritual needs of the patient) are often delayed in dying patients until a short time before death, when it becomes difficult if not impossible to meet these needs. The earlier involvement of others who may assist the seriously ill patient and the family (e.g., social workers, palliative care specialists, chaplains, and others) is facilitated by not defining a time before which cure is the only objective and after which comfort is the main objective.

Language

In discussions with patients and families, doctors should not use technical or medical language but instead should communicate in nonmedical terms used in everyday speech.5 Some words used in the medical literature and by doctors in clinical conversation are commonly insensitive and imprecise and are used without apparent awareness of their emotional overlay. If such words are part of doctors’ common speech they will inevitably be heard by dying patients and their families and will thereby affect their perceptions of and the course and nature of the interpersonal transactions that take place. Some phrases are inherently insensitive (e.g., “withdrawal of care,” “futility,” and “terminal care”) or imprecise (e.g., “passive euthanasia”), or they have emotional overtones arising from their meaning in common usage (e.g., “paternalism,” “autonomy,” “nutrition,” and “hydration”).

The term “withdrawal of care” is still widely used,68 although the awful implication of the literal meaning of the phrase was pointed out long ago.9 It is important to make clear to the patient and the family that care will not be withdrawn, only some treatments.10,11

The term “futility” is also problematic in communications with a patient and family because of its meaning in common parlance of having no useful result, no purpose, or no importance. When used in the context of end-of-life care it can easily come to imply that because continuing to treat the patient is futile or has “a lack of worth,” this “worthlessness” is a characteristic of the patient or perhaps describes the way in which the doctor views the patient. Second, the meaning of “futility” in this context is highly subjective; it could be argued that any therapy that prolongs life at any cost has some intrinsic utility and, indeed, some patients and families do argue for this attitude. Finally, despite its apparently definitive nature, it is not possible for the word to be given a prospective operational definition, so it is often used imprecisely.

Grenvik introduced into intensive care medicine the concept “terminal weaning” to describe an orderly process of withdrawal of intensive therapies irrespective of subsequent physiologic deterioration.12 However, a better descriptive term that has a weaker implication of expected death should be used.13 Withdrawal of intensive therapies is not always followed by the immediate death of the patient, and a few patients will survive long term. Clearly, the process is not always terminal, nor is it the doctor’s intent that it be so. Similar difficulties pertain to the use of the phrase “terminal care” to describe the process of care during and after withdrawal of therapies. The term “comfort care” is preferable to “palliative care” in this situation because comfort is a familiar and unambiguous aspect of everyday experience, whereas the word “palliative” is a technical and medical term.

Withdrawal of Treatment While Maintaining Care

Before initiating a discussion about withdrawal of treatment, it is important to establish that all members of the treating team have formed a consensus concerning the prognosis and the further possible treatment options that might be reasonable. It is crucially important that differences of opinion among members of the treating team concerning prognosis and reasonable further treatments be resolved before treatment options are discussed with the patient and the patient’s family.

It is then necessary for a senior clinician to meet with the family and present the information and the consensus. This involves explaining the nature and extent of the disease process that has occurred and describing the likely functional consequences of it in ways that are readily understandable. It also involves explaining the sequence of antecedent events, the unfavorable clinical course, and the lack of treatable factors, the high likelihood of death, and the ongoing burden of intensive treatments. In this situation the clinician should offer the consensus recommendation that intensive therapies be withdrawn and then invite family discussion and agreement with that recommendation. We recommend “seeking consensus” about a recommendation rather than “asking for permission” to withdraw therapies.1

Examples of therapies that might commonly be withdrawn include mechanical or inotropic circulatory support, renal replacement therapy, and sometimes mechanical ventilatory support and the endotracheal tube. Invasive investigations and physiologic monitoring may be discontinued. It should be emphasized that care for the patient and the family will never be withdrawn. The ambience at the bedside usually becomes less technologic and more caring. Attention becomes focused on ensuring that the needs of the patient and the family are met—including symptom control, an evident sense of caring by the entire treating team, unrestricted access to the patient by the family, and emotional and spiritual support for all involved.

REFERENCES

1 Levy MM. End-of-life care in the intensive care unit: can we do better ? Crit Care Med. 2001;29:N56-N61.

2 Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ. 2005;330:1007-1011.

3 Bashour CA, Yared JP, Ryan TA, et al. Long-term survival and functional capacity in cardiac surgery patients after prolonged intensive care. Crit Care Med. 2000;28:3847-3853.

4 Streat S, Judson JA. Cost containment: the Pacific: New Zealand. New Horiz. 1994;2:392-403.

5 Cassell J. Life and Death in Intensive Care. Philadelphia: Temple University Press, 2005.

6 Wijdicks EF, Rabinstein AA. Absolutely no hope? Some ambiguity of futility of care in devastating acute stroke. Crit Care Med. 2004;32:2332-2342.

7 Hinshaw DB, Pawlik T, Mosenthal AC, et al. When do we stop, and how do we do it ? Medical futility and withdrawal of care. J Am Coll Surg. 2003;196:621-651.

8 Boudreaux AM, Tilden SJ. Ethical dilemmas for pediatric surgical patients. Anesthesiol Clin North Am. 2002;20:227-240.

9 Orr RD. Withdrawing the critical but not the care. JAMA. 1994;272:1326.

10 Faber-Langendoen K, Lanken PN. Dying patients in the intensive care unit: forgoing treatment, maintaining care. Ann Int Med. 2000;133:886-893.

11 Prendergast TJ, Puntillo KA. Withdrawal of life support: intensive caring at the end of life. JAMA. 2002;288:2732-2740.

12 Grenvik A. “Terminal weaning”; discontinuance of life-support therapy in the terminally ill patient. Crit Care Med. 1983;11:394-395.

13 Apelgren KN. “Terminal” wean is the wrong term. Crit Care Med. 2000;28:3576-3577.

14 Curtis JR, Engelberg RA, Wenrich MD, et al. Studying communication about end-of-life care during the ICU family conference: development of a framework. J Crit Care. 2002;17:147-160.

15 Curtis JR, Engelberg RA, Wenrich MD, et al. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171:844-849.

16 Cuthbertson SJ, Margetts MA, Streat SJ. Bereavement follow-up after critical illness. Crit Care Med. 2000;28:1196-1201.

17 McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32:1484-1488.