Make the Family Your Best Friend
It’s fair to say that it would be unusual for a patient to be started on insulin, anticoagulants, or cancer chemotherapy without his or her family being clearly involved and informed. After all, these are potent drugs with unpredictable, serious side effects that can quickly take a life if misused or miscalculated. Granted, these drugs treat serious illness. But wait … isn’t severe pain that requires daily opioid administration a serious disease?
Based on what this editor commonly sees, severe pain is simply too trivialized. Around-the-clock opioids are routinely prescribed to patients without any involvement of family members or caregivers. I’m amazed that I am constantly referred patients who have been prescribed a high-dose, around-the-clock opioid regimen, and the family is either unaware or uneducated about the seriousness of the patient’s pain and the possible complications of the therapy.
Why Make the Family a Friend?
An obvious answer is found in one of my colleague’s responses. I told him I was writing this editorial on making the family your “best friend,” and he immediately quipped “or your worst enemy.” Indeed, he had recently suffered the experience of many a good pain doctor. He had a patient taking only a low dose of oxycodone who chose to go on a bender—a deadly mixture of alcohol, high doses of his prescription opioid, and Valium. A family member who lived 500 miles away and who had never met the doctor or even seen the patient in a decade unilaterally decided that the overdose death was entirely the doctor’s fault. He complained to the doctor’s medical board, which agreed with the family member and condemned the doctor. The malpractice charge will probably come next.
Sadly, patients who don’t take medication “as prescribed,” although there are clearly written instructions on the bottle, may not be considered responsible. If they don’t follow directions and misuse or fail to take medications as prescribed, it becomes the doctor’s fault—at least, to some family members and some in the legal profession. This nonsensical, unfair, and frightening turn of events calls for a new “family plan.” Every consent contract, and even flyers in the waiting room, need to say that the doctor is not responsible when medications are not taken as prescribed. Physicians should always defend each other and demand that patients take personal responsibility.
The Bias of Families
The fact is that there are a lot of cultural tough-it-out biases against pain treatment embedded in many families. If you’ve been in the business long enough, you will see family members exert their bias against pain treatment, opioids, and their own family member in some pretty cruel ways. They will condemn, argue, and even cast out family members who attempt to get pain treatment. Patients can be emotionally hurt and bruised over being called weak, ungodly, or evil. I’ve seen family members lie, steal, and sell patients’ medications. Some have even sent bizarre pastors to condemn a patient, and refused to house them, take them to the doctor, or share a rightful health plan. The most common assault I see is constant harping at the patient to detoxify and get off medication. Physicians must simply defend impaired pain patients who are too ill to help themselves.
How to Combat Family Bias?
Education. Families and patients have to know that pain severe enough to require a vigorous treatment, such as daily opioids or implants, is truly a disease on top of an underlying anatomical condition. Families and patients need to know that uncontrolled pain, even flares or breakthrough pain, negatively affects hormone balance, raises cardiac risk factors, causes immune suppression, and produces tissue atrophy in the central nervous system. Families and patients need to know that severe pain can’t be willed away or eliminated by simple measures such as supplements, topical preparations, or psychotherapy.
Families need to know that the necessity for opioids may not be eternal. Let them know that opioids are like a splint necessary to relieve suffering and protect the patient while healing measures are attempted. Let them know, however, that detoxification or withdrawal won’t be successful unless some tissue regeneration and permanent pain reduction have taken place.
Bringing the Family on Board
When it becomes evident that daily, around-the-clock opioids are required, bring a family member in for education and information. In my clinic, I have a family member complete a form validating that his or her family member has severe pain, has tried many therapies, and needs vigorous medical treatment including opioids. For my money, family involvement does more to prevent abuse, misuse, and diversion of drugs than contracts and urine tests. I also have a family member attend the patient’s first few clinic visits to further educate him or her on the risks and benefits of treatment and the need to protect abusable drugs from theft or misuse. Family members are encouraged to call with concerns or questions.
Making the Family a Friend
Admittedly, our first job is to take care of the patient, not the family. But it’s axiomatic that a patient with an underlying painful condition that requires around-the-clock opioids will sooner or later need the support of a caring family. Unfortunately, our therapeutic abilities at this time are not sufficient to always prevent deterioration in the patient with severe, chronic pain. Families need to know that deterioration may include such unpleasantries as a wheelchair, incontinence, and dementia. For our patients’ sake, we need to make someone in their families a team member and a good friend.
—Forest Tennant, MD, DrPH
Editor in Chief