Refusal of pain medication

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is a vitally important part of good health care, and an especially important part of quality care for patients at the end of life.  Several studies have shown that pain and symptom management is one of the core domains of quality from the perspective of patients.  However, family members sometimes will refuse pain medication on a patient’s behalf.  This request rightfully raises an red flag for any health care provider because of the strong ethical duty to prevent harm and suffering.  In this column I will focus on two of the main reasons why family members request restrictions on the use of pain medication:  (1) concern about side effects, such as addiction or reduced level of consciousness; and (2) fear that liberal use of pain medication could hasten the patient’s death.  I am also going to focus my discussion on patients at or near the end of life as opposed to other circumstances (such as post-surgical or chronic pain).

Concerns about side effects can be addressed by educating family members about the different classes of medication and what the real risks are of addiction or decreased level of consciousness.  In some cases their concerns are unjustified with respect to the particular medication being used.  If risk of addiction is a legitimate side effect of the medication, it can be explained to family members that the risk of addiction is the lesser of two evils (compared to dying in pain) for patients near the end of life.  When engaged in a discussion about this, most family members will come to agree that the most important thing is to keep the patient comfortable.  Sometimes denial is a factor as their concern about addiction may stem from a belief that the patient is going to recover and will then have to deal with the addiction.  If they remain unconvinced another option is to explore using different medications that don’t carry the same risk.

The concern about decreased level of consciousness is a bit more complicated because the interaction between patients and family members is often of great importance not only to the patient’s quality of life but also to the family.  Anecdotally, this is probably the number one reason why patients themselves will refuse pain medications near the end of life; many patients would be willing to accept a certain amount of pain and suffering if it allows them to remain alert enough to interact with people important to them.  Resolving this issue requires a careful balancing of both values by finding ways to keep the patient’s pain reasonably controlled while also respecting the family’s interest in keeping their loved one alert.

Fear of hastening death with certain pain medications is common not only amongst family members of patients but also amongst health care professionals, and this fear has been shown to contribute to the under-treatment of pain.  The fear usually applies to opioids, which were long thought to carry an increased risk of respiratory depression.  However, numerous clinical studies have shown no significant association among opioid use, respiratory depression, and shortened survival.  The consensus among many professional organizations, such as the Hospice and Palliative Nurses Association in the U.S., is that the risk of hastening death is minimal if opioids are used responsibly within established guidelines. 

Despite your best efforts to educate and reassure family members about the importance of good pain management, some will continue to refuse it or request strict limitations on its use.  When that happens it is important to remember that they do have ethical and legal responsibilities as substitute decision makers.  If the patient is visibly suffering, and there isn’t a good reason to believe the patient would accept that state of suffering, the decision to restrict the use of pain medication could be challenged on the grounds that the substitute decision maker is not fulfilling his or her responsibilities to the patient.