Continuous deep sedation in patients nearing death

Abstract

Imprecise taxonomy makes interpreting trends difficult

Deep sedation is occasionally the only effective treatment for refractory symptoms and suffering in terminally ill patients. In their accompanying study, Rietjens and colleagues report a significant rise in continuous deep sedation in the Netherlands from 5.6% in 2001 to 7.1% in 2005, while cases of euthanasia declined over the same period.¹

Continuous deep sedation is an accepted treatment in the Netherlands for patients whose life expectancy is two weeks or less. The Dutch study reports that 1200 fewer people died as a result of euthanasia but 1800 more died as a result of terminal sedation in 2005 than in 2001. Although the increase follows the publication in 2002 of guidelines for general practitioners on the use of continuous deep sedation, and attention in the Dutch media, the cause of this trend is unclear. There is concern that continuous deep sedation may enable doctors to evade the procedural requirements for euthanasia. In the Dutch study, 9% of deaths during continuous sedation were preceded by a euthanasia request from the patient that was not granted,¹ and last year 43% non-compliance with the Dutch prescribing guidelines for terminal sedation was reported.²

Few data are available on the frequency of these practices in the United States or United Kingdom because no comparable national population based studies have been carried out. However, sedation for the treatment of otherwise intractable symptoms has become accepted practice among US and UK clinicians treating patients with advanced incurable illnesses who are close to death. Controversy and resistance to the procedure have declined as concerns have been formally discussed, guidelines have been developed, and position statements of professional associations have been published.^{3 4}

Because this treatment has become accepted in American hospice and palliative care practice, there is legitimate concern that sedation should not become a substitute for meticulous assessment and intensive treatment of physical symptoms and psychological or spiritual distress. Specialist palliative care teams regularly help patients with previously intractable pain, delirium, anxiety, or dyspnoea become comfortable. Palliative care is personalised and costly, while sedation is a relatively inexpensive, one size fits all treatment.

In 2007, international palliative care experts concluded that sedation is a valid option when other treatments fail to relieve symptoms in a patient expected to die within hours or days.⁵ The panel advocated small initial doses of a short acting benzodiazepine (midazolam), which are then titrated carefully against symptoms, allowing the patient to communicate intermittently. The panel also recommended that advice from palliative care specialists should be sought before instituting sedation. Only 9% of Dutch general practitioners in this study, which was completed before this recommendation was published, had done so.

The Dutch series is important in monitoring national trends and patterns of continuous deep sedation in one country. What lessons are applicable internationally? Meaningful interpretation of these findings is impeded not only by the legality and acceptance of euthanasia in the Netherlands, but more so by a persistent deficit of clearly defined taxonomy for component treatments and practices. The term “continuous deep sedation” is not precise enough to discern the reasoning and motives of clinicians needed to support relevant ethical analyses. Euthanasia implies the intention to hasten death. If the terms “palliative sedation” and its subcategory, “terminal sedation,” are clearly defined they can contribute to a meaningful taxonomy.

“Palliative sedation” applies to treatment of pain or other physical distress with sedating drugs when other approaches have failed. In critical care units, palliative sedation may be used for a prolonged period until other treatments alleviate distress or the patient deteriorates, and it is used in other settings as short term crisis management. Although patients may die during palliative sedation, it is not the intended treatment goal. “Terminal sedation” refers to palliative sedation prescribed for symptomatic patients who are expected to die soon. It is usually applied in situations in which life prolonging treatments have been stopped. Use of artificial hydration should be considered on its own merit in relation to symptom control. Death is the anticipated outcome, and titrated terminal sedation is given with the aim of ensuring that patients are comfortable as their disease causes death.

This Dutch study provides some insight into end of life management of patients with intractable suffering. We suggest that subsequent surveys that ask doctors about reported deaths use clear categories that can help us interpret empirical patterns of end of life care. Such surveys should also collect other pertinent information about treatment, such as concurrent use of medically administered nutrition and hydration, the drugs and doses given, and the interval between administration of sedating drugs and death. This would enhance our ability to compare trends related to these important components of end of life care from one country to another over time. Further research must incorporate the perspectives of patients and families, as well as professionals from health care, spiritual care, social services and the social sciences, law, and ethics.

Clinicians and the societies they serve would benefit from informed public discourse about ethical and effective ways to alleviate persistent suffering at the end of life.