Patient-centered care involves empowering patients and family caregivers to make decisions about their care. We need to consider their values and what they want. We also need to understand patient's knowledge, beliefs, concerns, and myths that they may have about pain. This module reviews barriers that can affect good pain control. Pain can change overall quality of life for patients and family caregivers by causing emotional distress, anxiety or depression, disturbing sleep and appetite. Pain can also delay healing, reduce activity, and slow rehabilitation and interfere with relationships and intimacy. When someone is in pain, they often can't work. Sometimes the family caregiver cannot leave their side. There may be lost wages and no healthcare coverage. It can be very demoralizing. Patients may come to the emergency department, have unplanned clinic visits or be admitted to the hospital because of unrelieved pain. All of this can be very costly. Evidence shows that if pain is relieved, persons are not constantly looking for help. Patients with well-controlled pain often get out of the hospital early so that they can be home and go back to work. There are many different barriers to pain control. Barriers can be classified as healthcare related, patient and family caregiver related, and healthcare system related. There's some legal and societal concerns as well. We're going to explore each one of these. Healthcare providers may lack knowledge and not know how to evaluate or treat pain. Asking patients to rate their pain using a 0 to 10 pain intensity scale is about as close to a pain assessment as providers often get. In future modules, we will review key aspects of a total pain assessment and how best to manage pain. For some healthcare providers, it can be a low priority to ask about pain and recorded severity. Providers are often busy focusing on disease management and may not take time to ask about pain. They also may be concerned about opioid addiction and misuse. Lastly, they may have different values, beliefs, or unknown bias in dealing with persons experiencing pain. Patients have many concerns and are often reluctant to talk about pain with their healthcare provider or family caregiver. They may think their disease is worsening and deep down, wonder whether it can be controlled. Patients may be stoic, they may not know they can expect pain relief or may worry about taking pain medications for fear of side effects and cost. Here are some other patient worries and fears you should know about. I'm afraid of getting addicted. If used too early, pain medicine won't work later. Pain and suffering is inevitable; I just need to bear it. Pain is not that bad, I can handle it. If pain is worse, it means my disease is worsening. I don't want to get constipated. I don't want to be a bother to the nurse or doctor, they're busy with other people. Family caregivers have their own set of beliefs, fears, and misconceptions. Some of the more common ones include being worried about their loved one becoming addicted, having too many side effects, or overdosing from pain medication. They may also believe their loved ones do not want to be viewed as weak. Lastly, they may question the need to start a pain treatment if it hasn't worked in the past. Healthcare setting barriers linked to pain problems include not having access to pain specialists or lack of institutional policies to deal with uncontrolled pain. Patients aren't in the hospital for long periods of time, so it's hard to get to know the patient's pain, and sometimes staff turnover is high and assignment patterns may not be consistent. Lastly, communication between providers may not occur regularly. All of these can be a barrier. There are legal and societal concerns too. Because pain was not addressed well in the past, many organizations have developed practice recommendations for acute, cancer, and end of life pain. Recently, the Centers for Disease Control in Atlanta, Georgia published guidelines for prescribing opioids for chronic pain. These were meant to help providers know when to start or continue opioids, which opioids to prescribe, and how to look for risks and harms of opioid use in all patients. While these guidelines are not meant for palliative care patients, they may, unfortunately, influence pain assessment and restrict opioid use in these populations and settings. We need to advocate for persons who are seriously ill to ensure that they get the best pain control possible. Lastly, think about persons who can't tell you they have pain. This is a huge barrier because pain is known mostly by patient-self report, persons who have problems communicating are at high risk for undertreatment of pain. These special populations include persons with thinking related impairment, those unable to speak due to a stroke or other neurodegenerative diseases such as ALS, those who have brain involvement due to cancer, those who are unconscious, disabled, mentally ill or even minorities with language barriers. We need to pay particular attention to children unable to express themselves and the elderly with dementia who may have multiple chronic painful conditions. As you can see, there are many barriers to knowing about pain and getting good pain treatment. There are also numerous persons who are at risk for having pain. We will talk about this more in an upcoming module.
