An 85 year old man with good pre-morbid function was admitted to the ICU following emergency laparotomy for a ischaemic perforation of small bowel. He had undergone a small bowel resection and primary anastomosis. Preoperatively, the patient had been delirious and unable to consent for surgery, assent was granted by his wife.
Postoperatively, the patient required mechanical ventilation, vasopressor support and renal replacement on admission. He stabilised by day 5, but remained mechanically ventilated. On day 5 of admission, during a discussion between the surgeon and the patient’s wife, the wife admitted regret that she had not had “better” discussions with the surgeons pre-operatively and raised doubts as to whether the patient would have wanted such treatment. Following those discussions between the wife and surgical team, limitations on care were placed; renal replacement therapies would not be restarted and vasopressor support would not be escalated beyond the existing level. A DNR order was implemented. On day 10, during discussion with the duty ICU consultant, it emerged that the patient had a written advance decision refusing “aggressive medical treatment”.
The patient continued to improve but could not be weaned from ventilation. A percutaneous tracheostomy was sited on day 10. On day 15 he was liberated from mechanical ventilation and able to use a speaking valve. He had regained mental capacity sufficient to discuss his care and wished to continue given the progress he had made. It was agreed that he would not be mechanically ventilated in the event of deterioration and the existing DNR order was confirmed. Subsequently, it became apparent that the small bowel anastomosis was leaking; it was agreed that treatment would be non-operative.
In total the patient was treated on ICU for 20 days before he was placed on an end of life pathway and died.
What are the implications of Advance Decisions on Intensive Care?
When a patient dies in critical care, it is often because a decision has been made to limit or withdraw life sustaining therapy. The majority of patients admitted to critical care lack capacity and cannot participate in decision making. In such instances it is standard practice for clinicians to make a best interests decision in consultation with a patient surrogate(s), usually the next of kin, who has no legal power to influence clinical decisions.
Advance decisions (AD) were envisaged as tools by which patient autonomy could be maintained despite mental incapacity inflicted by illness. They have been legally binding in the UK since the enactment of the 2005 Mental Capacity Act. An advance decision may take many forms but the circumstances in which it applies must be very specific. Most pertinent to critical care practice is provision 25.5 of the Act “An advance decision is not applicable to [refusal of] life-sustaining treatment unless…the decision is verified by a statement by P [the patient] to the effect that it is to apply to the treatment even if life is at risk…”. These must be in writing and signed by/ on behalf of the patient in presence of a cosignatory witness and produced for the clinician to inspect. The Act is very clear that “A person does not incur liability for carrying out or continuing treatment unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment”.1
The prevalence and impact of ADs in patients admitted to critical care in the UK is unclear. Literature in this field originates exclusively from North America where ADs have been promoted for 25 years (Patient Self-Determination Act, 1990). Two small studies from the 1990s found that 5-11% of patients had an AD at the point of admission to critical care, typically in older patients. Though the mortality in this group was higher, there was no difference in length of stay or the number and nature of interventions compared with the general critical care population.2,3 Contemporary data is no different. Canadian data found that an aggressive approach was taken with a cohort of very elderly (median age 85) patients in their units; mortality was 22% with half of those that died still receiving mechanical ventilation, vasopressor or renal replacement support. The presence of an AD made little difference to the degree of organ support provided or duration of admission.4 Similarly Hart et al. recently published a large retrospective database analysis of nearly 278000 ICU admissions, reporting that 4.8% of patients had established treatment limits at admission, but that 25% of such patients received interventions that contradicted those limits. Interestingly, wide variability in practice between centres was observed, suggesting that these findings are as much to do with the attitudes of individual clinicians as the culture of North American healthcare.5
The position of the patient surrogate is an interesting one, legally and ethically. A surrogate has no rights as a proxy-decision maker under the Mental Health Act and there is a body of evidence to suggest that surrogates’ decisions incorrectly predict patients’ decisions in as many as one third of cases.6
The SUPPORT intervention trial looked at end of life decision-agreement in 386 pairs in terminally ill elderly patients. Conducted as a prospective, randomized trial, the intervention group received intensive pre-interview counselling regarding diagnosis and treatment options from a team of specially trained nurses. The investigators found that at baseline patient-surrogate agreement was 75% and that this was not improved in the intervention arm where pairs had spent considerable time discussing the patients’ preferences. In follow-on analyses, >25% of patients wished to transfer decision making powers to their doctor.7 Unfortunately, much like the SUPPORT trial findings, the presence of a pre-existing AD does not improve patient-surrogate agreement.8
These findings are not surprising. Surrogates report high levels of decisional conflict which influences decision making when participating in end of life discussions, this conflict can be the summation of a complex emotional milieu.8 Furthermore the substituted judgement standard (SJS) which clinicians apply (asking the surrogate hypothetical questions about what a patient would want) is in itself an imperfect test.9
Previous oral statements are often taken as indications about patient wishes and influence decisions made using the SJS, but the precedent in UK case-law is clear; these should not be given weight in a best interests decision. Gordon describes the case of W v M (2012) where historical statements about not wanting to end up in a residential home or dependent on others were used to justify withdrawal of artificial hydration and nutrition in a minimally conscious patient. The judge ruled that these statements could not be used as evidence of the patients’ wishes regarding hydration and nutrition. While many commentators regard such statements as expressions of autonomy, others point out that such statements lack the context and specificity to be used in advanced decision making and others simply argue that they are not directive statements.10 In a thought provoking discussion, Phillips and Wendler argue that ultimately directing surrogates to decide “which option best promotes the life the patient valued for themselves, including the influence the patient wanted to have on the lives of others” is more likely to truly reflect a patients wishes.9
Advance decisions are uncommon in critical care and do not appear to influence patient management. Since they are legally binding documents, it must be assumed that most are technically invalid or not produced in a timely fashion. In the absence of a valid advance decision, the clinician must act in the best interests of the patient until such time that they regain mental capacity. Clinicians must recognise that, while it is best practice to involve a patients’ surrogates in treatment decisions, surrogates frequently fail to accurately advocate patients’ wishes.
1. Mental Capacity Act of 2005. (Eng).
2. Johnson RF, Baranowski-Birkmeier T, O’Donnell JB. Advanced directives in the Medical Intensive Care Unit of a Community Teaching Hospital. Chest, 1995; 107:752-56
3. Goodman MD, Tarnoff M, Slotman GJ. Effect of advanced directives on the management of elderly critically ill patients. Crit Care Med, 1998; 26:701-4
4. Heyland D1, Cook D, Bagshaw SM, Garland A, Stelfox HT, Mehta S, Dodek P, Kutsogiannis J, Burns K, Muscedere J, Turgeon AF, et al. The very elderly admitted to CRITICAL CARE: A quality finish? Crit Care Med, 2015; 43:1352-60
5. Hart JL, Harhay MO, Gabler NB, Ratcliffe SJ, Quill CQ, Halpern S. Variability Among US Intensive Care Units in Managing the Care of Patients Admitted With Preexisting Limits on Life-Sustaining Therapies . JAMA Intern Med, 2015;175:1019-26
6. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med, 2006; 166:493-7
7. Marbella AM, Desbiens NA, Mueller-Rizner N, Layde PM. Surrogates’ agreement with patients’ resuscitation preferences: effect of age, relationship, and SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Crit Care, 1998; 13:140-5
8. Chiarchiaro J, Buddadhumaruk P, Arnold RM, White DB. Prior advanced care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc, 2015; 12:1528-33
9. Phillips J, Wendler D. Clarifying substituted judgement: the endorsed life approach. J Med Ethics, 2015; 41:723-30
10. Gordon J, Significance of past statements: speech act theory. J Med Ethics, 2013; 39:570-572