Patients reported that the benefits of opioid therapy outweighed the burdens and chose to continue to take opioids when they balanced the benefits with the adverse effects. All found opioids helpful with improvements to their quality of life or dyspnea or both. Concerns about safety or stigma regarding opioid treatment were rare. Family caregivers echoed this view, and some felt that opioids had actually helped to extend patients’ lives. Both patients and family caregivers described the burden of living with severe, persistent dyspnea and how opioids had improved the quality of their lives. Conversely, many physicians indicated uncertainty and discomfort about prescribing opioids to patients with COPD. Lack of guidance, confidence and experience, a fear of respiratory suppression, and concern about censure were key factors limiting their willingness to prescribe opioids in this context. However, most acknowledged that dyspnea is difficult and frustrating to manage and thus were willing to consider opioids for this purpose. These findings suggest a substantial gap between patients’ and caregivers’ experiences and physicians’ current practices related to opioid therapy for refractory dyspnea in advanced COPD.
Despite the trend toward more explicit recommendations and clinical practice guidelines from professional societies for the use of opioids to treat refractory dyspnea in patients with advanced COPD,7,27,28
many physicians remain hesitant to do so. From a medical perspective, a shroud of uncertainty and disquiet continues to surround the use and prescription of opioids for patients with COPD. Arguably, disproportionate emphasis has been placed on the risk of respiratory depression that is not supported by currently available evidence. Deep-rooted fears that militate against the use of opioids are likely based on innumerable factors, but our findings suggest that, while physicians report prognostic uncertainty, fear of hastening death via respiratory suppression, and fears of recrimination, their patients, for the most part, appear to be open to whatever will relieve their dyspnea.
We are unaware of similar studies specifically dealing with attitudes about the use of opioids for dyspnea in patients with COPD, other than our preliminary work. Our initial surveys at continuing medical education events highlighted clinicians’ discomfort with prescribing opioids as a treatment for dyspnea in patients with advanced COPD.8
We followed this survey with a pilot study of respiratory therapists’ and family physicians’ experiences and attitudes in New Brunswick.9
In the present study, we extend this pilot work by providing insights into patients’ and family caregivers’ experiences with opioids, and contrasting this with physicians’ perspectives and current practices.
Our interpretation of data from our two studies was inevitably influenced by the investigators’ professional backgrounds (medical: G.R.; respiratory therapy: J.Y.; psychospiritual: C.S. and M.D.). All authors have conducted and completed prior qualitative studies in either clinical contexts of COPD or dyspnea9,23,24
or as part of doctoral or master’s thesis work (C.S., M.D., M.F.).
Congestive heart failure is similar to COPD in that patients tend to be older, have major comorbidity and, in later stages of illness, often experience refractory dyspnea or cough or both. Using a similar methodologic approach, Oxberry and colleagues in the United Kingdom interviewed 10 patients with severe congestive heart failure about their attitudes toward the use of morphine as a treatment for severe dyspnea or cough.29
They also found a rather surprising openness by participants to trying opioids for this purpose. Two patients in their study suggested that morphine “could be used to prolong or preserve life,”29
similar to our caregivers’ suggestions that morphine may have extended the life of patients with COPD. Although their study did not directly address physicians’ attitudes, some participants commented on their physicians’ negative views of using opioids except as a last resort, which mirrored some of our findings. The authors stated that “patients clearly sense when their doctor has reservations about a treatment, and as trust in the prescriber was important in their willingness to try morphine, measures that can help clinicians prescribe appropriately with confidence should be encouraged.”29
This echoes our conclusions about the need for further research into physicians’ concerns and approaches to education and evidence-based guidelines that can address these concerns.
Recent qualitative work involving physicians from the United States that focused on attitudes surrounding opioid prescribing for pain at the end of life30
or for noncancer pain among elderly adults31
also reported fear of censure (via drug enforcement agencies) and the need to improve knowledge, as well as overcome barriers to and fears surrounding opioid prescribing.30
There is little data on real-time prescribing of opioids for COPD-related dyspnea. Retrospective data from a Saskatchewan database indicate a far lower prevalence of opioid prescribing toward the end of life among patients with COPD who have dyspnea than among patients with lung cancer.32
The strongest evidence available at this time from clinical trials (a systematic review favouring the use of opioids33
and a short-term randomized crossover trial34
) supports the experiences of the patients and family caregivers interviewed in our study (i.e., effective relief of dyspnea without evidence of respiratory depression). More recently, in a dose-increment and pharmacovigilance study involving 65 patients in Australia in which opioids were used for refractory dyspnea (mostly due to COPD),35
there were no cases of respiratory depression during a mean follow up of three months, and 51% of patients reported a benefit sufficient for them to continue taking opioids.35
Preliminary data from an ongoing Canadian clinical trial (clinical trials.gov, trial no. NCT00982891) indicate even higher levels of self-reported efficacy and acceptability over a period of two to six months.36
The aim of qualitative studies is not generalizability, and our study is no exception. However, by conducting our study in both urban and rural settings, we hoped to generate new insight applicable to both. We accept that our quantitative data from the included patients and family caregivers (collected once and a small sample) was too limited to be generalizable; we have thus not reported all of the details here. Although we recruited physicians from several disciplines and from urban and rural settings, the views of the participating physicians may not represent the views of all those who care for patients with advanced COPD in Nova Scotia or elsewhere in Canada.
We recognize a potential bias in that we interviewed only patients who were taking opioids, and so we cannot report the views or concerns of patients or family caregivers who had been offered and declined or who had discontinued the use of opioids; however, we were primarily interested in those who had used opioids. We chose to enrol family caregivers who were living with patients who used opioids; the experiences of family caregivers who live elsewhere may be different. We are unable to comment on whether anxiety or depression had improved substantially for patients after opioids were started, but caregivers often mentioned that their loved one appeared “more relaxed.” We did not collect spirometric measures of airflow obstruction (i.e., FEV1 or FEV1/FVC ratio); most of the included patients were housebound, living with high dyspnea burden and had not undergone recent pulmonary function testing.
If the perspectives of the physicians interviewed represent those of physicians who practise elsewhere in Canada, patients living with advanced COPD and refractory dyspnea are unlikely to experience treatment benefits comparable to those of our study participants. Family members may also be denied potential relief of associated stress that can burden them for years.24
Discrepancies between the positive experiences of patients and family caregivers and the reluctance of physicians to prescribe opioids for refractory dyspnea constitute an important gap in care. Bridging this gap will likely require innovative educational initiatives to improve the uptake of guidelines and confidence in prescribing opioids for refractory dyspnea. At professional society conferences in both Canada and the United States, we have used, to good effect, film footage of patients and their caregivers discussing the effects of opioids for refractory dyspnea. Others have recently promoted the concept of a rapid learning model, similar to the “plan, do, study, act” cycle promoted by the Institute for Healthcare Improvement,37
to disseminate new information from clinical trials and consensus statements from professional societies about palliation of dyspnea.38
To address the many knowledge gaps regarding patient and caregiver perspectives, we are collecting, in an ongoing clinical trial, both quantitative and qualitative assessments of patient and caregiver experiences before and for six months after opioids are initiated for refractory dyspnea in advanced COPD.
Our patients and caregivers have taught us much about effective palliation; we have a duty to act on their insights. The Canadian Medical Association’s code of ethics reminds us of our responsibility to “first consider the wellbeing of the patient” and that doing so requires our engagement in “lifelong learning to maintain and improve … professional knowledge, skills, and attitudes.”39
Evidence is accumulating to suggest that soon the appropriate question will no longer be if we should prescribe opioids to help palliate refractory dyspnea in patients living with advanced COPD, but rather how to do this competently7,40