As discussed in the previous paper, a patient’s experience of “total pain” relates to many factors: pain from damaged tissues due to cancer; patient’s emotional status; the patient’s personality and coping abilities; the patient’s family and their reactions; patient’s relationship to the medical personnel and other staff caring for him or her. Many other factors come into play and they vary from one patient to another.
If the patient is fully conscious, the doctor or the nurses of the team will want to know where the pain is located, when it started, what makes it worse or better and what effects it is having on the patient (for example they experience insomnia because of the pain). In the last hours of life, however, it may be difficult to assess whether the patient is in pain, because they may not be fully conscious. Indirect signs of discomfort include agitation, groaning or contortions in face, hands and/or whole body.
The medical personnel use pain-relieving drugs to control the pain in patients with terminal conditions. Strong pain killers (opioids) are the drug of choice for end-of-life pain. Side effects can be managed effectively and they are quite appropriate for moderate and severe pain. Unfortunately, there are several myths in circulation regarding the use of opioids. They include the notion that “patients will get addicted” even if they do not have long to live. But addiction (known also as substance abuse) is manifested by repeat and significant adverse consequences due to repeat substance abuse (like losing one’s job or family etc).
Patients who are already addicted patients to legal or illegal substances at the end of their lives must still receive analgesic therapy until death. However, most dying patients are not addicted and will not become addicts during the short time-span they have left to live. Some patients and their families are also reluctant to accept the use of opioids because they believe that it signals imminent death or that if they begin using these drugs too early – they won’t be as effective later on when the pain is worse. These are unfortunate misconceptions because they can lead patients to endure severe pain when they don’t have to.
In this case, it is the responsibility of the physicians and other medical personnel to educate, advise and reassure patients, so that appropriate pain management can be offered.
Frequent side effects of opioids include nausea, sedation and itchiness that usually go away in 3-5 days, with or without the use of some additional medicines. In older individuals these strong medications may cause confusion, and a smaller dose of opioids may be appropriate. Constipation is the most frequent prolonged effect with opioid therapy and must be anticipated and prevented.
Opioids at the end-of-life are given primarily by subcutaneous injection (a needle under the very superficial layers of the skin). The opioids must be given every few hours regularly with additional medication for what is called “break through pain”. Sometimes, opioids need to be given via continuous subcutaneous infusion, so they are dripping into the patient’s body constantly. The doctors also have in their armamentarium other medications that can further assist in controlling terminal patients’ pain, in addition to opioids, such as sedatives, medications for itchiness, or steroids particularly for bone or internal organ pains.
Pain is one only of the problems at the end-of-life, as there are numerous physical changes as well in people approaching death. Such changes include disturbed breathing, lots of upper respiratory tract secretions, decreased level of consciousness until death, twitching of muscles, dry mouth, choking, decreased food intake, dropping blood pressure, irregular or weak heat rate, swelling of the lungs, pale, blue or mottled skin, skin breakdown, changes in the ability to pass urine etc. Patients and their families should have a good talk with their physicians and other medical personnel, so that they are educated and well prepared.
End of life is inevitable for all of us. However, modern medicine and embracing the concept of “total pain” can make our passage comfortable and dignified.
Angela Mailis Gagnon, MD, MSc, FRCPC(PhysMed)
Director, Comprehensive Pain Program,
Senior Investigator, Krembil Neuroscience Centre
Toronto Western Hospital,
Chair ACTION Ontario