Pain at the end of life continues to be of great concern as it may be often unrecognized and/or untreated. While it is ethical to reduce suffering at the end of life, barriers remain about appropriate and adequate pain management at the end of life.
Even before end of life, nearly half of patients with cancer report moderate to severe pain; up to 30% report the pain as severe; and an estimated 25% will die in pain. Persons with other non-cancer diagnoses also report significant pain. Effective pain and symptom management at the end of life increases quality of life and may prolong life rather than accelerate death.
The fundamental understanding when assessing pain is to accept that the patient’s self-report is the most reliable indicator of the intensity of his own pain. According to Margo McCaffery, RN, MS, and pain management specialist, “Pain is whatever the experiencing person says it is, existing whenever he says it does.” (The Final Journey by Sangita Devi Dasi)
Pain is subjective, influenced by one’s childhood, life experiences, and culture. A patient’s perception and reaction to pain is also influenced by mood, morale, and pain threshold. Therefore, observations of a patient’s behavior should never override what the patient is describing. Similarly, sleep or sedation should never be mistaken for pain relief. Someone with severe pain can fall asleep simply from exhaustion, but may later awaken in agony. (The Final Journey).
Barriers to effective pain management at the end of life come in many forms:
1. Patient and family: Denial of pain by the patient and family due to some of the following fears:
– Addiction to pain medications if taken regularly
– Side effects associated with pain medications especially those that may interfere with staying alert and clear
– Increasing pain as a sign of disease progression
– Belief that pain is a natural part of an illness and cannot be relieved
– A sign of weakness or being an “increased burden” on the caregiver, etc.
2. Health care providers: Those medical staff who do not specialize in hospice and palliative care for the dying may not recognize the “holistic nature” of pain especially at the end of life which not only includes physical pain, but often includes the psychological, social, emotional and spiritual effects of pain. Recognizing and addressing existential pain is of paramount significance in relieving the distress of the terminally ill. Hospice care is a holistic approach to the pain and symptom management of the dying with the sole purpose of dignified and loving comfort care for the patient and his or her family.
Pain medications, if given correctly, can give the suffering patient relief without many of the side effects. There is a saying among hospice professionals regarding pain management, “Start low; go slow.” This is principally to assist the patient achieve better levels of pain control without experiencing distressing side effects. Please note that one side effect of taking any type of opioid medication for pain includes constipation. Of all the possible side effects of taking opioids that may be able to be alleviated in time, constipation is one side effect that, unfortunately, remains an issue when taking opioids for pain. However, this can be well managed with the use of a “natural” laxative made with senna. *(There are other laxative products as well that may work better, or tolerated better by your patient. Please consult your patient’s hospice nurse regarding this important issue. Your particular hospice will probably have their own regimen for this common side effect.) The object is to stay on top of the problem of constipation rather than wait until it becomes an issue. Most likely, your hospice nurse will prescribe a regular laxative program at the time the patient is first prescribed opioids for pain. This is the usual hospice protocol. In this way, a regular laxative program will keep your patient comfortable BEFORE it becomes a problem and constipation increases, possibly causing nausea, confusion, and other unnecessary symptoms for your loved one.
Relieving pain as far as possible is one of the most fundamental measures to improve quality of life especially at the end of life. We must persistently support and advocate for humane and dignified care of the dying by promoting ethical and effective pain and symptom management without exception.
Please Note: For more detailed information on End-of-Life Pain Management and Hospice Care, please refer to The Final Journey — Complete Hospice Care for Departing Vaishnavas (2nd Edition; Torchlight Publishing).