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
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.
Prognosis and Decision Making
In a patient in whom multiple organ failure is persistent and in whom decline is slow but inexorable, the situation becomes increasingly obvious over time. A period of observation within the context of an agreed-upon plan not to escalate therapy during continuing clinical deterioration can help to clarify the overall course of the patient’s illness.4 The concept of an illness trajectory2 may help the treating team and the patient’s family to focus on whether the balance between attempted reversal of the multiple organ failure and providing comfort measures is reasonable for the individual patient.
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.
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,6–8 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
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.
Good Communication
The essential elements of good communication by doctors in these situations are as follows: (1) being willing and prepared to discuss all the issues realistically, compassionately, honestly, and fully; (2) ensuring that there is a private setting and adequate time for the discussions; (3) unhurriedly listening to the patient and family; and (4) ensuring that decisions reflect a robust consensus built on mutual trust and respect.14–17
Withdrawal of Treatment While Maintaining Care
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
Specific Cares
Decisions to withdraw therapies take place in a medical, social, and cultural context and are best made in a consensual manner in which conflict among members of the team and between the team and the family is anticipated, addressed, and resolved. It is essential to allow the time necessary for information gathering and for obtaining agreement among clinicians and with the family. However, when clinicians appreciate that this work is an important responsibility, and when they facilitate the necessary processes (including holding repeated and sensitively managed family meetings), the process does not take undue time, does not deprive other patients of treatment, and is greatly appreciated by families.16
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.