Sedation At The End of Life

Dear Barbara, Will you talk about sedation at the end of life?

There is a misconception that dying is painful and therefore pain medicine or narcotics should be used routinely in the last days to weeks of life. We also need to add to that discussion tranquilizers (to calm) and sedatives (to induce sleep).

Let’s begin with pain when dying. Dying does not cause pain; disease causes pain. Not all diseases create pain, so we need to look at a person’s disease history to determine if we are witnessing actual physical pain, mild flu-like discomfort, or our own fears as we watch the labor of dying.

If physical pain has been a part of the disease process, then pain medicine in quantities that create comfort needs to be administered around the clock, 24/7, until death has occurred. Pharmacologically speaking, there is no reason for anyone to die in physical pain today. People die in pain because of ignorance, fear, and lack of communication and understanding on the part of caregivers, physicians, nurses, and significant others.

If physical pain has not been an issue in the disease history, then generally the physical sensations will be similar to flu-like heaviness—that ache-all-over sensation. If you had the flu, you would not take a narcotic; you would take a couple of ibuprofen. So it is when a person is dying. If pain has not been an issue in the disease process (this is the key point I am making here), then the person does not need a narcotic. You can give an analgesic, which will provide comfort. Giving narcotics for respiratory distress is another issue entirely and can be very appropriate and comforting.

Restlessness is also a natural part of the dying process. It can be related to lack of oxygen, but more often it is the dying person’s subconscious fear of approaching death—of entering an unknown experience. If the restlessness is mild, such as picking at clothes or making random hand movements, nothing needs to be done medically. If the restlessness becomes agitation, to the point that you are concerned the person may fall out of bed or otherwise hurt themselves, then a mild medication is very appropriate. Haldol and Ativan both work very well.

Sedatives generally aren’t necessary as death approaches. There may be a semantics issue here between tranquilizer and sedative. I am using sedative to mean sleep inducement. Sleep comes naturally in the dying process and gradually increases over three to four months before death actually occurs. Most people naturally sleep (are non-responsive) in the hours to even days before death. We generally do not go from saying something very profound to those at our bedside to taking our last breath. That scenario is for the movies. When we are dying a gradual death from disease or old age, most of us are asleep—even though we may be moving and muttering—in the last moments to days of our lives.

What I really believe is that most often the issue of pain during the dying process is more of a concern for us, the watchers (that includes doctors and nurses as well as family and significant others), because we are afraid and do not understand what is happening—and less a physical reality for the dying person. We bring our fears, our role models, our stereotypes, our imagination, and our culture to the bedside, and the natural, normal labor we are witnessing is then translated into the belief that physical pain is occurring.

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If you are unsure whether what you’re seeing is pain, restlessness, or the natural process of dying, the End of Life Guideline Series Bundle can help you understand what is normal, what needs comfort, and when medication is truly necessary—so fear does not guide decisions at the bedside.