Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 4.0 Managing Dyspnea and Ventilator Withdrawal

Just because dying is natural doesn't mean it's easy.
- Dan Tobin, MD

"Dyspnea" is a medical term that means shortness of breath - but that does not fully describe the terrible anxiety and suffering that struggling to breathe causes for patients and families. The World Health Organization (1998) describes dyspnea as an "unpleasant awareness of breathing." Patients feel breathless or have trouble breathing. No wonder, then, that untreated dyspnea contributes to suffering and anxiety. Severe dyspnea is associated with chronic respiratory failure and with the final course of many illnesses. Anxiety can lead to or worsen dyspnea. Patients sometimes experience dyspnea during ventilator withdrawal. For patients who have been on ventilators during an earlier exacerbation of disease, advance care planning should address future ventilator use and withdrawal. Health care providers need to talk to patients and families about what to expect, under what situations to initiate and withdraw the ventilator, and how dyspnea will be treated. The National Hospice Study (Greer et al., 1984) found that 70 percent of cancer patients had dyspnea in the last six weeks of life; other studies have shown that between 29 and 74 percent of dying patients have dyspnea. As death approaches, symptoms may worsen; in one study of seriously ill patients, more than half were reported to have severe dyspnea in the last three days of life (Lynn et al., 1997).

Dyspnea is often left untreated, not because we lack effective treatments but because many physicians resist using opioid drugs or sedative hypnotics for dyspnea, fearing that their use will lead to respiratory depression and death. Although patients who have been on opioid drugs for a few days or more are fairly resistant to respiratory depression, many physicians continue to see the potential for respiratory depression as an absolute barrier to treatment. "Opiophobia" (Campbell et al., 1999) describes some physicians' absolute refusal to use opioids for fear that doing so may hasten death. In fact, in the dying patient, there is no way to prove whether or not the opioid hastened death. As dying progresses, with or without the opioid, several physiologic changes that indicate imminent death are the same as signs of opioid toxicity. In Britain and elsewhere, patients with chronic symptomatic dyspnea are routinely given opioids in doses that relieve symptoms; their physicians do not feel that this practice shortens life. Indeed, the benefits of restful sleep and reduced anxiety may help these patients to live well a little longer.

Although law and medicine have taken some liberties with the original religious doctrine, many practitioners and most courts (including the U.S. Supreme Court, in Washington et al., Petitioners No. 96-100, v. Harold Glucksberg et al., 117 S.Ct. 2258 [1997]) rely on "double effect" to assess whether opioid use (as well as other treatments with some risk of causing death) is justifiable. The double effect reasoning holds that if a patient is suffering enough to warrant the risk of opioid use, and if the intent was only to relieve that suffering, it is acceptable to have risked causing an earlier death. In other words, if the alternative is to leave the patient in misery, and if the treatment is aimed at relieving suffering rather than at causing death, then treating with opioids is acceptable, even if doing so may hasten death.

In This Chapter

Several Breakthrough Series teams aimed to reduce and relieve dyspnea, primarily by training clinicians and establishing competencies and by studying and reducing practice variations. This chapter provides information and protocols for ventilator withdrawal, including ways to prevent dyspnea during this process. It also includes strategies for assessing and treating dyspnea and for using the Plan-Do-Study-Act model as a way to improve patient care.

Can an organization promise its patients that anytime they are feeling short of breath or suffocating, prompt relief will be provided? Yes. If clinicians who care for these patients are confident in their ability to relieve dyspnea and can promise them that sedation will be promptly available to avoid a sense of suffocation near death, such promises can be made. Readers should note that the strategies that have proven effective for pain management - such as writing standing orders or authorizing nurses to act independently - are not as effective in improving management of dyspnea. This chapter offers guideposts for organizations and individuals who are certain that change is necessary - and possible.

Physicians should be able to treat patients with dyspnea with opioid drugs and close observation. When using opioids to treat dyspnea, the dose must be titrated to the patient's responses; hypersomnolence will precede significant respiratory depression and signal the clinician to adjust the opioid dose. In the unusual event that a patient experiences respiratory depression after initiating or increasing the dose of opioid, close observation until the effects decrease is usually sufficient. Narcotic antagonists are almost never necessary, although they are available.

Innovators Need to Know

Because so many dying patients will experience dyspnea, treating and controlling it is critical to improving their care. Patients who know that dyspnea will occur are (for good reason) afraid - and organizations that can promise to relieve this symptom will do much to relieve patient fear and anxiety.

  • An institutional commitment to relieving dyspnea is critical to improving treatment.
  • Providers need continuing education that dispels "opiophobia."
  • Patients and providers need to talk about dyspnea and discuss the benefits and risks associated with treatment.
  • Providers can meet clinical competency standards for dyspnea management.
  • Standing orders that limit variations in practice also enable providers to respond more quickly to patient needs.
  • Patients, families, and providers need to discuss the likelihood that a patient will be placed on a ventilator and whether or not the patient wants a trial on the ventilator.
  • To have such a discussion, the care system has to be able to deliver profound sedation if that is the only way to avoid death by suffocation.
  • Any physician who can start a ventilator should be required to know how and when to stop it.

4.0.1 Case Study - Hospice Care of Rhode Island
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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