There's bad COPD and then there's really bad COPD "“ so bad that drugs called opiates (usually used for severe pain and in hospice) may be worth considering.
I recently wrote about Mr. A, a 64-year-old man with Stage IV chronic obstructive pulmonary disease (COPD). Although Mr. A is chronically short of breath, he hasn't yet reached the point at which his main concern is unbearable shortness of breath.
Unfortunately, as several Caring.com community members pointed out, in really bad COPD (sometimes called end-stage COPD) the symptoms often become almost unbearable. Daily debilitating shortness of breath is one of the hardest feelings to cope with, sufferers report.
This shortness of breath, which doctors also call dyspnea, sometimes improves with oxygen therapy. Most people also benefit from pulmonary rehabilitation (if they can find it near them). Cognitive-behavioral therapy (a type of psychological counseling) can help a person learn to cope better with panicky feelings brought on by dyspnea. And because depression is common with COPD, it should also always be checked for and treated.
But if these treatments are unavailable or insufficient, it might be time to try a palliative care stalwart: opiate drugs such as morphine and oxycodone. Many patients, caregivers, and even doctors may not realize that opiates are increasingly being used effectively to treat breathlessness in COPD patients who aren't in hospice or haven't transitioned to comfort-only medical care.
It's a new emerging approach: the American Thoracic Society (the professional society for lung specialists and critical care doctors) only came out with guidelines endorsing opiates for severe breathlessness in 2008, and research on the best use is still underway.
Here are five things about opiates that every COPD caregiver should know:
1. Research has definitely shown that opiates help relieve the feeling of breathlessness.
Separate from their effect on pain receptors, opiates also act in the body to relieve breathlessness and air hunger. This effect has been shown in multiple studies, including studies of people with COPD. However, this only works when the opiates are taken orally or intravenously; no effect on breathlessness was seen when opiates were inhaled or delivered by nebulizer (the misting machine often used for other COPD medications).
2. Although higher doses of opiates can slow breathing, they've been shown to be safe in COPD when carefully dosed.
When used properly, opiates are safe. But if a person accidentally (or purposefully) takes a dose much higher than he's used to, opiates can slow down breathing. In the extreme, this can cause life-threatening levels of high carbon dioxide and low oxygen in the blood. Given the bad lungs of the average COPD patient, many health providers avoid using opiates out of concern for affecting the breathing. However, recent research studies have shown that appropriate doses of opiates (i.e. low doses in those who aren't used to opiates, or doses equal to or modestly higher than usual) do not affect a COPD patient's ability to breathe effectively. As for addiction (another common concern related to use of opiates), the risk is minimal in those without a past history of substance abuse.
3. Opiates do cause side effects, but these are usually manageable.
Many patients (and doctors) are also reluctant to use opiates out of fear of such common side effects as nausea, confusion, or drowsiness. These can be minimized by starting with very low doses, and by only slowly increasing the dose (although this might mean it takes longer for the person with COPD to notice an effect on breathlessness). Nausea and drowsiness also often get much better after a few days as the body becomes used to the drug. Some people require a little trial and error to find the right type of opiate. The other major side effect of all opiates is constipation. This, unfortunately, doesn't go away over time. This is why most people on opiates need to also use laxatives (Senna and Miralax seem most effective; Colace by itself doesn't do much). There's no good evidence that using laxatives with opiates causes long-term damage to the bowels.
4. Many doctors are unfamiliar or uncomfortable prescribing opiates.
Whether for pain or for breathlessness, many doctors haven't had adequate training or experience prescribing opiates, especially those other than Vicodin or Percocet (which are combination pills that include acetaminophen, and usually don't require doctors to go through the special prescription mechanisms that other opiates require). This can make doctors reluctant to provide the education, support, and monitoring needed for a safe and effective trial of opiates for shortness of breath.
For this reason, it's often worthwhile to seek out a doctor trained in palliative care (comfort care to manage the severity of disease, not the same thing as hospice). The very best solution, of course, is to find a multi-disciplinary clinic where lung specialists work closely with other professionals, such as palliative care doctors, social workers, psychologists, and therapists. These clinics are often hard to find, however.
5. A trial of opiates should always "Start low, go slow," with lots of monitoring and checking-in.
To maximize safety and minimize side effects in those with very bad COPD, it's essential to start with very low doses of opiate. The dose should then be slowly ramped up, to reach a point at which the person with COPD notices a improvement in breathlessness.
One set of researchers suggests starting with 1mg of oral morphine per day, with a slow ramping up over one to two weeks to 1mg of oral morphine every four hours while awake. (For comparison, a single Vicodin tablet contains the equivalent of 7.5mg of morphine.) Eventually, since oral morphine usually only provides an effect for about four hours at a time, these authors suggest switching to a longer-acting form of opiate, which can be taken just once or twice daily. In one longer-term Australian study, people with bad COPD ended up taking 10-30mg of extended-release morphine per day.
My prescription for caregivers
Appreciate that living with the symptoms of bad COPD is very difficult. Pulmonary rehabilitation, cognitive-behavioral therapy, and treatment of depression and anxiety are often helpful.
Ask a doctor about a carefully monitored trial of opiates (for someone with severe daily shortness of breath). Look for a doctor experienced in using and monitoring opiates for symptom management; if your lung specialist isn't familiar with this, consider finding a palliative care doctor.
If your loved one and doctor decide to give low-dose opiates a try, you can help monitor that they're not being abused by keeping track of how many pills are taken every day. Also monitor for constipation.
Make sure the patient, after starting opiates or any other drug to treat symptoms, has a follow-up appointment within a few weeks. It's essential to check that the drugs are helping and that there haven't been any concerning side effects.
If the patient is using the opiates more quickly than prescribed, is getting opiates from more than one prescriber, or may be abusing alcohol or other drugs, be sure to let the doctor know right away. Special care should also be taken with opiates' storage, to ensure they aren't stolen, resold, or misused by other people in the household or the patient's care circle.