Keep caregivers in loop for terminal patients

Understanding medications is vital to good care

Many patients who are terminally ill suffer needlessly because of fears they have about taking pain medications. They often think that if they take a drug that relieves the pain they currently experience, they will build a tolerance and drugs won’t be effective later when their pain becomes unbearable. They also have a fear of addiction.

Helping patients understand the difference between addiction, tolerance, and dependence is extremely helpful in this situation, says Pamela Bennett, BSN, RN, director of external affairs for the American Pain Foundation in Baltimore and an independent pain management consultant.

Dispelling patients’ fears about pain medication is only one aspect of the education required during a terminal illness. Family members who are caring for the patient often play the role of physician, pharmacist, and nurse because they provide 24-hour care for the patient if he or she is not hospitalized.

"They are placed in a situation where they must make choices and decisions they weren’t trained to make," explains Bennett. For example, the patient may be very anxious and in pain, so the caregiver must decide whether to give the patient something for anxiety or something for pain. A health care system must provide education and support to family caregivers regarding pain medication necessary at the end of life, whether the patient has end-stage cardiac disease, renal disease, chronic obstructive pulmonary disease, cancer, or AIDS, says Bennett.

Caregivers often believe that their loved one will not be able to experience any meaningful time with family and friends when they are on pain medications. It’s an area in which education is needed, says Bennett. "There are a variety of adjunctive types of medication, so even if patients are on high doses of opioids there are still other things we can do that gives them that quality of life," she explains.