ABSTRACT
Chronic obstructive pulmonary disease is progressive and in its advanced stage is associated with major disability. Previous studies suggest that patients with this disease receive little palliative care, even in very advanced stages. Given this, our objectives were to describe the clinical practice of Spanish pulmonologists in the care of patients with end-stage chronic obstructive pulmonary disease, to identify potential barriers to implementing palliative care in these patients and to correlate these responses with doctor's years of experience. A link to an online survey was sent to pulmonologists on (a) symptom management, (b) structure of their department and collaboration with other services, (c) specialized medical training in palliative care, (d) communication with patients and their families, and (e) limiting barriers identified in the management of these patients. A total of 387 responses were received. The majority used opioids to treat dyspnea (52.9%) or pain (54.2%) and many treated anxiety/depression (41%). Around half of the respondents had no established routines in their departments to offer palliative care to patients with chronic obstructive pulmonary disease. There was little communication with end-of-life patients and their families on disease course, mainly associated with a lack of medical training (83% of cases) and changes in patient wishes regarding care through the disease course (81%). In our setting, communication with end-of-life patients with chronic obstructive pulmonary disease is poor. The key challenges identified are insufficient medical training and changing desires of patients. No substantial differences in attitude were found as a function of experience.
KEYWORDS:
Introduction
Chronic obstructive pulmonary disease (COPD) is the fourth cause of death and the fourteenth cause of disability worldwide (Citation1,Citation2). In 3% to 15% of patients with COPD, the condition is considered severe, significantly compromising physical, psychological and social functioning (Citation3). It can be difficult, however, to identify COPD patients in the end stage of the disease (Citation4). This uncertainty leads these patients to be less likely to receive palliative care and die at home and more likely to be treated in intensive care units on mechanical ventilation (Citation5) than cancer patients. These differences exist despite the majority of COPD patients preferring treatment focused on comfort rather than prolonging life (Citation6–8), especially those who have had a previous discussion with a pulmonologists (Citation9). Various scientific societies have produced documents concerning the integration of palliative care into standard care for COPD patients. Nonetheless, surveys in some countries among professionals involved in the care of COPD patients in the end stages of the disease have shown that communication with these patients is poor and it has been suggested that improvements should be made in professional training and specific protocols should be established (Citation9,Citation10). In our setting, little is known about the provision of care for end-stage COPD patients.
Thus, the objectives of this study were to describe the clinical practice of Spanish pulmonologists in the care of end-stage COPD patients, to identify any difficulties in the provision of palliative care for these patients and to correlate these responses with doctors' years of experience.
Methods
Study design
This was a cross-sectional descriptive non-controlled study based on sending a link, by email (in October 2014), to an online survey on the provision of end-of-life care to COPD patients to pulmonologists who were members of the Spanish Society of Pulmonology and Thoracic Surgery (SEPAR), had been clinically active in the previous year, and were interested in the provision of care to COPD patients. Only data from fully-completed questionnaires were included in the analysis. As stated by the ethical guidelines of the Declaration of Helsinki, since this was a non-experimental, voluntary survey, not including patients, no ethical approval was required.
Questionnaire
The anonymous self-administered survey was developed in Spanish specifically for this study by consensus among researchers based on similar questionnaires, evidence on palliative care in the literature and recommendations from Spanish COPD guidelines (Citation7,Citation9,Citation10). It was first tested on a small group of pulmonologists before sending it to the whole sample.
Prior to completing the questionnaire, the pulmonologists were reminded of the criteria set out by Curtis et al. (Citation12). Specifically, the presence of two or more of the following characteristics identifies patients at high risk of dying in the following 6 months: (a) volume of air exhaled during the first second (FEV1) <30% of reference values, (b) long-term dependence on oxygen therapy, (c) one or more hospital admissions in the previous year due to COPD exacerbation, (d) left-sided heart failure or other comorbidities, (e) cachexia, (f) poor functional status, (g) dependence on others, and (h) age > 70 years old.
As well as asking for participants' affiliation details, the questionnaire had five sections concerning: (Citation1) symptom management, (Citation2) structure of their department and collaboration with other services, (Citation3) training received in palliative care, (Citation4) communication with patients and their families, and (Citation5) barriers to the management of these patients.
Statistical analysis
Quantitative variables are expressed as means and standard deviations (SDs) and qualitative variables as absolute values and percentages. We established two groups of doctors as a function of their experience as pulmonologists: ≤20 years and >20 years. To compare the quantitative characteristics of the groups, we used nonparametric Wilcoxon rank-sum test, and to compare qualitative variables we used chi-squared test or Fisher's exact test. Data analysis was performed with IBM SPSS Statistics for Windows, Version 16.
Results
A total of 386 answers (response rate of 32%) were received from across the 17 Spanish autonomous regions. The mean age of respondents was 48.11 ± 12.75 years and just over half (53.2%) were men. Overall, 75% of them worked in a university hospital and 43.9% had more than 20 years of professional experience; a third worked specifically with end-stage COPD patients and most had read 1 or 2 publications on such patients in the previous 6 months (). Pulmonologists with more than 20 years of experience were older (55.1 ± 5.3 vs. 39.1 ± 6.4; p < 0.001), more frequently men (65% vs. 43.1%; p < 0.001) and more likely to have read more end-of-life care papers than their less experienced colleagues (8.6% vs 1%; p = 0.001) ().
Table 1. Characteristics of participants and differences in characteristics of participants regarding years of experience. Results are expressed in absolute values and percentages.
Symptom management
More than half of the respondents reported always or often using opioids for treating dyspnea (52.9%) and pain (54.2%) and just under half always or often treated patients for anxiety and depression (42.1%) (). No differences were observed by years of experience (Table 1S).
Table 2. Symptom management. Results are expressed in absolute values and percentages.
Department structure, collaboration with other services and training
Half (50.3%) of respondents reported that no specific protocols were established in their department or unit for the provision of palliative care to COPD patients, while a similar percentage (53.2%) claimed that there was no plan to develop such protocols in the near future. The majority considered that pulmonologists themselves (62.9%) and/or palliative care specialists (62.3%), when available, should coordinate the provision of care to end-stage COPD patients. The results were very variable concerning multidisciplinary work, but in general, there seemed to be little collaboration between health professionals ( and Table 2S).
Figure 1. Collaboration between health professionals. Results are expressed as a percentage of the total.
Only 10.1% of respondents reported having received appropriate training in palliative care. Nevertheless, around half of them had a book on palliative care (44%), read journals and papers on palliative care of end-stage COPD patients (59.1%) and/or were interested in participating in research in this field (54.7%).
Doctor–patient–family communication
More than half of respondents (66.2%) reported often or always discussing the disease course, but fewer often or always discussed life expectancy and the relationship between death and suffering (44.1% and 31.2%, respectively), and a third rarely discussed religious beliefs (32.2%) (). These results were independent of the years of experience of the respondents (Table 3S). Further, a third (29.9%) only sometimes talked to patients about decisions regarding endotracheal intubation and cardiopulmonary resuscitation as a ceiling treatment. More than a third of respondents rarely discussed patients' preferred place of death and the making of an advance directive (39.4% and 38.7%, respectively). Participants sometimes addressed topics on end-of-life care with caregivers/family members away from patients, but recognized that they rarely changed the information given to the patients and/or caregivers/families. Less than half (46%) did not take decisions on behalf of these patients without the approval of the patient or a caregiver/relative (). Experienced doctors were slightly more likely to exclude patients from their discussions and adjust information given to them than younger doctors (Table 4S).
Table 3. Doctor–patient communication: topics discussed. Results are expressed in absolute values and percentages.
Table 4. Doctor–patient communication: Decision making. Results are expressed in absolute values and percentages.
Professional barriers
The barriers to communication between doctors and patients most frequently identified were a lack of training received in this area (87.5%), variability over time in patients' wishes regarding care (80.7%) and a lack of established protocols in their hospital (75.7%). Other barriers included the difficulty of predicting the course of the disease (63.2%), a lack of a precise definition of end-stage COPD (59.7%), patients' difficulties deciding what type of care they want in the event of worsening (58.1%), a lack of family support (53.8%), concerns about dashing patients' hopes (46.3%), and a lack of patient readiness for discussing these topics (44.1%). Only 23% of respondents were concerned about legal implications ().
Figure 2. Barriers identified by doctors by years of experience (expressed as percentage).
Interestingly, the barriers identified differed with length of experience, those most often cited by less experienced pulmonologists being a lack of training (90.3%) and lack of established protocols (79.8%), while more experienced doctors cited first variability over time in patients´ wishes (90.1%) and second a lack of training (83.8%) ().
Discussion
This is the first survey conducted among Spanish pulmonologists concerning the care of end-stage COPD patients. The main findings of this study are that in our setting there tends to be no agreement on or planning of decisions and approaches to be taken. The main reasons for this are a lack of specific training, variability over time in patients' wishes regarding their care, and a lack of established protocols at the institutional level.
In our study, more than half of the pulmonologists who responded reported often using opioids for the treatment of dyspnea or pain, similar to the rate reported in a Dutch survey (50%) (Citation13), but higher than rates reported by other authors (37%) (Citation10). A low use of opioids has been attributed to patients being unwilling to receive opioids (Citation13), and a fear of causing clinically significant respiratory depression or increasing mortality (Citation14,Citation15). Current guidelines, however, indicate that these drugs are effective and safe, as long as doses are titrated and there is strict monitoring of potential adverse effects (Citation16,Citation17). Alternatively, in COPD patents, benzodiazepines are used for sleep disturbance and anxiety and may also be used to relieve breathlessness; however, there is no evidence for their beneficial effect (Citation18,Citation19) and we did not evaluate their use our survey.
Other treatments such as oxygen, humidified high-flow nasal oxygen and non-invasive ventilation may be effective in the management of refractory dyspnea (Citation20–22). Nevertheless, they were not included in the survey.
The respondents in our study also reported treating anxiety and depression more often than observed by other authors (Citation11). This is a very important issue, considering that the prevalence of anxiety and/or depression in COPD patients (90%) is even higher than in cancer patients (52%) (Citation23).
Half of the pulmonologists (50.3%) admitted not following established protocols for providing palliative care to these patients, and that there were no plans to develop this type of service. According to a consensus statement of the American Thoracic Society, palliative care should be offered to patients at all stages of the disease, personalizing the care based on the needs of patients and their families. It is also suggested that clinicians who treat and provide care to patients with chronic and/or advanced respiratory diseases should be trained in a series of basic palliative care skills and have access to specialists in palliative care when a patient's needs go beyond their level of competence
Moreover, a growing number of recommendations advocate the establishment of multidisciplinary teams for the management of these patients (Citation23). In our survey, over half the respondents believed care for end-stage COPD patients should be coordinated by pulmonologists and/or palliative care specialists. That is, although there tends to be limited training in this field in our setting, there seems to be considerable willingness to overcome this shortage.
Despite the fact that in previous research the majority of patients with severe or very severe COPD expressed their wish to plan and discuss their preferences regarding end-of-life care (Citation11), our study indicates that there is a less than desirable level of communication with patients and their families concerning this care. As described in previous studies, the majority of respondents did not know the priorities of their patients regarding end-of-life care (Citation7,Citation23).
In our study, more than half of professionals reported discussing the disease course with their patients (always or often in 66.2% of cases), but less than half discussed life expectancy (44%) and how death could relate to their suffering (49%). Nevertheless, these figures are higher than those found in other studies, in which only around a third of respondents reported having discussed the course of the illness with their patients (Citation24,Citation25).
Regarding preferences about end-of-life care, there was great variation among the professionals in whether decisions concerning the use of mechanical ventilation and cardiovascular resuscitation were discussed with patients and the drafting of an advance directive document was suggested. Notably, around 60% of respondents reported never or only rarely asking patients where they would prefer to die (60%) or suggesting that they could make an advance directive (59%), while lower but still considerable percentages never or only rarely asked whether they would want mechanical ventilation (29%) or cardiovascular resuscitation (42%). Nevertheless, the figures are somewhat better than in previous research, where these rates were from 68% to 81% (Citation10).
A topic that is often not discussed but which may be important for patients is that of the patient's beliefs and religious views (Citation26). In our case, similar to findings elsewhere, it seems that only a small percentage of professionals touch on the topic of religion (Citation11).
The most commonly reported barrier to communication between doctors and patients was the lack of training in palliative care. Such a lack of training and associated lack of experience is likely to contribute to patients' own resistance to these treatments for fear of possible adverse effects, a key reason why they are rarely prescribed these drugs (Citation13). Educational organizations and scientific societies should offer training programs in palliative care, it having been demonstrated that such programs and even minor interventions lead to improvements in various areas of knowledge and attitudes and that these improvements are lasting (Citation27).
The second most commonly cited barrier was the fact that patients often change their preferences about end-of-life care. For this reason, it is important to increase the level of knowledge about the disease and its course among COPD patients and their families. In a study in various European countries on the preferences in the general population about end-of-life care decision making, 68% of the sample from Spain wished to actively participate in this process, although this rate was lower than the European mean (74%) (Citation28).
Thirdly, participants identified the lack of specific protocols as a barrier to communication. In a study in the United Kingdom, only 21% of respondents claimed to adhere to established policies and procedures in the departments for end-of-life patients with chronic respiratory diseases (Citation29). These data point to clear areas for improvement. Each institution should develop specific strategies to guide health professionals in the design and development of palliative care that is feasible in their own setting.
There has been little research into differences in attitudes towards end-of-life COPD patients as a function of doctors' experience. Interestingly, we found no differences in symptom management, unlike a previous study that found that younger doctors prescribed opioids for the treatment of refractory dyspnea more frequently than their older colleagues (Citation14). Regarding barriers, the two groups identified the same types of problems but ranked them differently, younger doctors being more concerned about a lack of training and protocols and older doctors about changes in patients' wishes over time. To our knowledge, this is the first publication to specifically study attitudes to communication with patients as a function of clinician's experience, and in general, only minor differences were found.
Limitations
Various limitations of this study should be recognized. Firstly, the majority of the respondents worked in university hospitals and had more than 20 years of experience, and this means we should be cautious about extrapolating our results to the general population of Spanish pulmonologists. Secondly, this survey has sought to assess the attitudes and opinions of participants and does not provide objective data on prescription or communication. Knowledge of these attitudes and opinions is, however, important, to guide the development and implementation of clinical guidelines. Further, two-thirds of respondents dedicated a very small percentage or none of their time to treating end-stage COPD patients, and this may well influence their knowledge about the subject in question. Lastly, the response rate was low, but not unlike that in similar surveys (Citation13).
Conclusions
This study indicates that the communication between Spanish pulmonologists and end-stage COPD patients is far from what is recommended in clinical guidelines and that health professionals claim not to be suitably trained for this work. The identification and understanding of the main barriers to proper communication with patients are essential to overcome these barriers and be able to provide high-quality end-of-life care for advanced COPD patients.
Conflict of interest
None of the authors declare conflicts of interest in this article.
Declaration of interest
The authors report no conflict of interest regarding the publication of this article
Acknowledgments
The authors would like to thank all the health professionals who have participated on a voluntary basis in the survey sharing their experience and opinions.
References
- Vogelmeier CF, Criner GJ, Martinez FJ, Anzueto A, Barnes PJ, Bourbeau J, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2017 report. GOLD executive summary. Am J Respir Crit Care Med. 2017;195(5):557–582.
- Mannino DM, Buist AS. Global burden of COPD: risk factors, prevalence, and future trends. Lancet. 2007;370(9589):765–773.
- Hoogendoorn M, Feenstra TL, Schermer TR, Hesselink AE, Rutten-van Molken MP. Severity distribution of chronic obstructive pulmonary disease (COPD) in Dutch general practice. Respir Med. 2006;100(1):83–86.
- Tinkler M, Gillam M, Onyirioha T. Use of prognostic indicators to identify patients with end stage COPD: A survey of South-West (SW) England clinicians. Eur Respir J. 2013;42(Suppl):57.
- Claessens MT, Lynn J, Zhong Z, Desbiens NA, Phillips RS, Wu AW, et al. Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT. Study to understand prognoses and preferences for outcomes and risks of treatments. J Am Geriatr Soc. 2000;48(5 Suppl):S146–S153.
- Elkington H, White P, Addington-Hall J, Higgs R, Pettinari C. The last year of life of COPD: A qualitative study of symptoms and services. Respir Med. 2004;98(5):439–445.
- Sullivan KE, Hébert PC, Logan J, O'Connor AM, McNeely PD. What do physicians tell patients with end-stage COPD about intubation and mechanical ventilation? Chest. 1996;109(1):258–264.
- Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ Support Palliat Care. 2011;1(2):174–183.
- Miravitlles M, Soler-Cataluña JJ, Calle M, Molina J, Almagro P, Quintano JA, et al. Guía Española de la EPOC (GesEPOC). Tratamiento farmacológico de la EPOC estable. Arch Bronconeumol [Internet]. 2012;48(7):247–257.
- Carlucci A, Vitacca M, Malovini A, Pierucci P, Guerrieri A, Barbano L, et al. End-of-life discussion, patient understanding and determinants of preferences in very severe COPD patients: A multicentric study. COPD. 2016;13(5):632–638.
- Gaspar C, Alfarroba S, Telo L, Gomes C, Bárbara C. End-of-life care in COPD: A survey carried out with Portuguese Pulmonologists. Rev Port Pneumol. 2014;20(3):123–130.
- Curtis JR. Palliative and end-of-life care for patients with severe COPD. Eur Respir J. 2008;32(3):796–803.
- Janssen DJA, de Hosson SM, bij de Vaate E, Mooren KJM, Baas AAF. Attitudes toward opioids for refractory dyspnea in COPD among Dutch chest physicians. Chron Respir Dis. 2015;12(2):85–92.
- Clemens KE, Quednau I, Klaschik E. Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: A prospective study. Support Care Cancer. 2009;17(4):367–377.
- Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000;55(12):1000–1006.
- Marciniuk DD, Goodridge D, Hernandez P, Rocker G, Balter M, Bailey P, et al. Canadian Thoracic Society COPD Committee Dyspnea Expert Working Group. Managing dyspnea in patients with advanced chronic obstructive pulmonary disease: a Canadian Thoracic Society clinical practice guideline. Can Respir J. 2011;18:69–78.
- Barnes H, McDonald J, Smallwood N, Manser R. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database Syst Rev. 2016;31(3):CD01100.
- Ekström MP, Bornefalk-Hermansson A, Abernethy AP, Currow DC. Safety of benzodiazepines and opioids in very severe respiratory disease: national prospective study. BMJ. 2014;348:g445.
- Simon ST, Higginson IJ, Booth S, Harding R, Weingärtner V, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2016;10:CD007354.
- Ekström M, Ahmadi Z, Bornefalk-Hermansson A, Abernethy A, Currow D. Oxygen for breathlessness in patients with chronic obstructive pulmonary disease who do not qualify for home oxygen therapy. Cochrane Database Syst Rev. 2016;11:CD006429.
- Pisani L, Fasano L, Corcione N, Comellini V, Musti MA, Brandao M, et al. Change in pulmonary mechanics and the effect on breathing pattern of high flow oxygen therapy in stable hypercapnic COPD. Thorax. 2017;72(4):373–375.
- Curtis JR, Cook DJ, Sinuff T, White DB, Hill N, Keenan SP, et al. Noninvasive positive pressure ventilation in critical and palliative care settings: Understanding the goals of therapy. Critical Care Medicine. 2007;35:932–939.
- Lanken PN, Terry PB, Delisser HM, Fahy BF, Hansen-Flaschen J, Heffner JE et al. An official American thoracic society clinical policy statement: Palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med. 2008;177(8):912–927.
- Heffner JE, Fahy B, Hilling L, Barbieri C. Outcomes of advance directive education of pulmonary rehabilitation patients. Am J Respir Crit Care Med. 1997;155(3):1055–1059.
- Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest. 2005;127(6):2188–2196.
- Lowey SE, Norton SA, Quinn JR, Quill TE. Living with advanced heart failure or COPD: Experiences and goals of individuals nearing the end of life. Res Nurs Heal. 2013;36(4):349–358.
- Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL. Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J. 2004;24(2):200–205.
- Sullivan AM, Lakoma MD, Billings JA, Peters AS, Block SD. Creating enduring change: demonstrating the long-term impact of a faculty development program in palliative care. J Gen Intern Med. 2006;21(9):907–914.
- Daveson Ba, Bausewein C, Murtagh FEM, Calanzani N, Higginson IJ, Harding R, et al. To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe. Palliat Med [Internet]. 2013;27(5):418–427.