http://orcid.org/0000-0002-3403-3586
Abstract
Severe chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD) is undertreated and few patients access specialist palliative care in the years before death. This study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Retrospective medical record audits were completed at two Australian hospitals, with all patients who died from COPD over 12 years between 1 January 2004 and 31 December 2015 included. Of 343 patients included, 217 (63%) were male with median age 79 years (IQR 71.4–85.0). Median respiratory function: FEV1 0.80L (42% predicted), FVC 2.02L (73% predicted) and DLco 9 (42% predicted). 164 (48%) used domiciliary oxygen. Sixty (18%) patients accessed specialist palliative care and 17 (5%) wrote an advance directive prior to the final admission. In the final admission, 252 (74%) patients had their goal of care changed to aim for comfort (palliation) and 99 (29%) were referred to specialist palliative care. Two hundred and eighty-six (83%) patients received opioids and 226 (66%) received benzodiazepines, within 1 or 2 days respectively after admission to palliate symptoms. Median starting and final opioid doses were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalent/24 h. Hospital site and year of admission were significantly associated with palliative care provision. Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission, however, few patients were referred to specialist palliative care. Similarly, there were missed opportunities to offer symptom palliation and a palliative approach in the years before death.
Abbreviations
COPD Chronic obstructive pulmonary disease
RMH Royal Melbourne Hospital
NHW Northeast Health Wangaratta
NIV Non-invasive ventilation
ICU Intensive Care Unit
HDU High Dependency Unit
RCU Respiratory Care Unit
Introduction
Palliative care aims to improve the quality of life of terminally ill patients and their families through the prevention and relief of suffering (Citation1). Whilst specialist palliative care arose in response to the needs of cancer patients, its goal of providing holistic care to manage distressing symptoms, psychosocial and spiritual issues, are equally relevant to patients with advanced respiratory diseases (Citation2–6). The American Thoracic Society recommends that all health professionals who care for patients with chronic or advanced respiratory diseases should be trained in and capable of providing basic, generalist palliative care or a palliative approach to their patients (Citation3, Citation7–9). Nevertheless many health professionals have received no formal palliative care or communication skills training and cite this as a significant issue when caring for patients with advanced respiratory disease (Citation10–16). By contrast, specialist palliative care is provided to patients with complex symptoms or needs by health professionals who have completed additional training in palliative care (Citation17).
Few patients with advanced chronic obstructive pulmonary disease (COPD) access specialist palliative care. In the United States only 1.7% of COPD patients receiving long-term oxygen therapy were referred to specialist palliative care when admitted with an exacerbation (Citation18). Similarly, large cohort studies from the United Kingdom (UK) and Australia suggest only 16.7–17.9% of COPD patients receive any specialist palliative care (Citation19, Citation20). Difficulty estimating the prognosis due to the highly variable and unpredictable disease trajectory in COPD is an important barrier to specialist palliative care referral (Citation13, Citation21). Whilst there is usually a gradual decline over many years, any exacerbation can abruptly change function or be fatal (Citation22–24). Therefore, it is extremely challenging to determine the short-term prognosis or predict death from COPD (Citation22, Citation23).
Whilst it is clear that access to specialist palliative care is poor for COPD patients, little is known about any palliative care these patients receive when they die. As 72% of COPD patients die in hospital in Australia (Citation25), this study aimed to determine if symptom palliation or a palliative approach were delivered during the final hospital admission in which death occurred. Additionally, we aimed to identify if end-of-life care varied according to geographical location.
Methods
Study sites
The Royal Melbourne Hospital (RMH) is an Australian, metropolitan, teaching hospital with 450 acute beds. Both respiratory medicine and palliative care services (including specialist medical and nursing staff) are available. Multiple specialty outpatient clinics are available, including an integrated respiratory and palliative care clinic (the Advanced Lung Disease Service) established in 2013 for patients with non-malignant, respiratory disease (Citation26). Inpatient care for respiratory patients is provided on medical wards or the respiratory ward, with non-invasive ventilation (NIV) available in the Respiratory Care Unit (RCU), Intensive Care Unit (ICU) or High Dependency Unit (HDU). Additionally there is an inpatient palliative care unit onsite.
Northeast Health Wangaratta (NHW) is a major, regional hospital in Australia with 140 acute beds. There is no specialist respiratory service or clinic. Outpatient care occurs through the NHW general medicine clinic or privately. A specialist palliative care nurse is available for consultation. Inpatient care is provided by general physicians on medical wards, with NIV available in the Critical Care Unit, which offers ICU and HDU level care.
Study design
Retrospective medical record audits were completed at RMH and NHW of all patients who died at each site over 12 years between 1st January 2004 and 31st December 2015, with COPD listed in one of the first five diagnoses at death. Only those patients who died as a consequence of COPD (including respiratory infections) and not from other comorbidities were included. Patients with any co-existing malignancy were excluded as these patients may have accessed palliative care for their malignancy and not COPD. Only patients with a confirmed diagnosis of COPD (based on the history and previous spirometric testing confirming obstruction) were included.
COPD deaths were identified from each site’s mortality database using the International Classification of Diseases codes: J43-44. Medical records, administrative and clinical databases were examined to explore how clinical care was delivered, and to determine the use and duration of treatments with preventive, therapeutic and palliative intent during the final admission in which death occurred. Using definitions developed by Philip et al. (Citation27), preventive treatments include those given for comorbidities such as hypercholesterolaemia, therapeutic interventions included (but were not limited to) antibiotics, oral steroids, and NIV, and palliative treatments included opioids and benzodiazepines to palliate symptoms. Offering a palliative approach was defined as any of: initiating palliative treatments, discussing or documenting advance care planning, documenting that the goal of care in the terminal admission was to provide comfort care (palliation), completing a resuscitation status form or referral to specialist palliative care.
Data were collected regarding pre-admission disease severity and previous inpatient and outpatient hospital care, including previous access to specialist palliative care. Whilst all patients had spirometry results available, only results within two years of death were included. Ethics approval was granted for this study by the Melbourne Health Research Office (Approval number: QA2014171) and by the Northeast Health Wangaratta Human Research Ethics Committee (Project number: 169).
Statistical analysis
Data are reported descriptively using counts and frequencies, with median values and interquartile ranges reported for variables with significant distribution skew. Data from each site were compared using Student’s t test for continuous variables and the chi square test for categorical variables. The 12 years included in the study period were divided into three 4-year blocks: 2004–2007, 2008–2011 and 2012–2015. Logistic regression was then used to examine associations between palliative care provision and year of admission. Statistical analyses were performed using IBM SPSS Statistics version 24. Statistical significance was indicated by p < 0.05.
Results
Patient characteristics
Six hundred and ninety-one COPD deaths were identified, of which 343 met eligibility criteria with 221 patients from RMH and 122 from NHW (). Almost two-thirds (217, 63.3%) of patients were male, with median age 79.4 years (IQR = 71.4–85.0) (). At NHW there were significantly more never smokers (p < 0.0001) and more patients with coexisting respiratory diseases (p < 0.0001) or co-existing cardiac disease (p = 0.005) compared with RMH. At RMH significantly more patients had documented cor pulmonale (p < 0.0001). There were no other significant differences in demographic or disease characteristics between the two groups.
Figure 1. Study participants’ eligibility.
Table 1. Patients’ clinical characteristics.
Whilst the diagnosis of COPD was confirmed for all included patients, only 166 (48.4%) had completed pulmonary function tests within the 2 years before death. The modified Medical Research Council (mMRC) breathlessness score was documented for only 9 (2.6%) patients (all from RMH) and was inferred from outpatient notes for remaining RMH patients, with 153 (69.2%) having a score of 3 or 4, suggesting severe breathlessness.
Previous respiratory management
Approximately half (195, 56.6%) the cohort had attended an outpatient appointment in the two years prior to death, with significantly more patients receiving outpatient care at NHW (p < 0.0001) (). Sixty (17.5%) patients had accessed specialist palliative care (from the Advanced Lung Disease Service, community palliative care and/or inpatient specialist palliative care team) prior to the terminal admission and 17 (5.0%) had written an advance directive (AD). There was no significant difference between the two sites in access to specialist palliative care or completion of advance care planning (ACP), however, the median time between writing an AD or discussing ACP and death was significantly longer at NHW (462 days, IQR = 233–614) compared with RMH (152 days, IQR = 56–303; p = 0.042). Twenty-one (6.1%) patients were prescribed opioids for chronic breathlessness as outpatients prior to death. One hundred and six (30.9%) patients had previous admissions in which a resuscitation status decision was made, with this occurring more frequently at RMH than NHW (p = 0.001).
Table 2. Previous outpatient care and admissions.
Terminal admission care
One third of patients (111, 32.4%) had pneumonia on admission, with similar proportions at each site (RMH 32.6% and NHW 32.0%), and the majority (254, 74.1%) were admitted under general medicine (). Of the 160 patients not admitted under respiratory medicine at RMH, 61 (27.6%) were referred to respiratory medicine within 1 (IQR = 0–4) day from admission. In keeping with the greater availability of HDU/ICU beds at RMH, significantly more patients were admitted to these beds at RMH compared with NHW (p = 0.04).
Table 3. Terminal admission care.
Medications prescribed during the terminal admission to all patients and by each site are shown in and . All treatments were initiated on admission, except for statins and antiplatelet medications, which had been commenced previously. The median number of antibiotics prescribed was 2 (IQR = 2–3) with no difference by site, however, antibiotics were significantly more likely to be ceased before death at RMH compared with NHW (p < 0.001). Nebulised bronchodilators (p = 0.005), oxygen therapy (p = 0.011) and low molecular weight heparin (p = 0.007) were significantly more likely to be ceased before death at NHW. NIV was significantly more likely to be both initiated (p = 0.014) and then ceased before death (p < 0.0001) at RMH compared with NHW.
Figure 2. Initiation and continuation of treatments during the terminal admission for the whole cohort (n = 343). NIV = Non-invasive ventilation and LMWH = Low molecular weight heparin. Steroids refers to oral steroids, not inhaled steroid use. Statins and anti-platelet medications had been initiated prior to the terminal admission.
Figure 3. Initiation and continuation of terminal admission treatments by site. Each block of 4 bars represents one treatment, with initiation and continuation shown for RMH in the first 2 bars as dark blue and dark red and NHW in the second 2 bars as light blue and light red. NIV = Non-invasive ventilation, BD = Nebulised bronchodilators and LMWH = Low molecular weight heparin. * represents a significant difference in practice between RMH and NHW.
Having a documented goal of care aiming for comfort (palliation) was associated with ceasing antibiotics (p < 0.0001), oral steroids (p < 0.0001) and NIV (p < 0.0001). Forty-four (12.8%) patients received antibiotics and oral steroids, and 88 (25.7%) received nebulised bronchodilators despite having a documented goal of care aiming for palliation.
In the 275 patients in whom oxygen therapy was continued until death, for the majority (193, 70.2%) the documented intention was for breathlessness palliation. Of the patients who continued using NIV until death, significantly more used this for symptom palliation (not to treat hypercapnoeic respiratory failure) at RMH (16, 11.3%) than at NHW (10, 4.5%; p = 0.034).
For the whole cohort the median time from admission to death was 5 (IQR = 2–10) days, with no significant difference by site (). Within the whole cohort for patients in whom antibiotics were ceased before death, the median time to stop antibiotic therapy was on day 3 (IQR 1–7) of the admission. However, antibiotics (5 days, IQR = 1–10; p = 0.008) and oral steroids (2.5 days, IQR = 1–9.8; p = 0.001) were continued for significantly longer at NHW compared with RMH (antibiotics: 3 days with IQR = 1–6, and oral steroids: 2 days with IQR = 0–4). There was no difference between sites for the duration of other treatments.
Figure 4. Timeline of admission events (n = 343).
Palliative approach
Documentation regarding resuscitation status (68.8%) and that the goal of care had been changed to aim for comfort (73.5%), was high. Referral to specialist palliative care (p < 0.0001), documentation of goal of care (p < 0.0001), documentation of resuscitation status (p < 0.0001), and place of death (p < 0.0001) differed significantly by site ().
Opioids were prescribed to 294 (85.7%) patients with morphine (286, 83.4%) being the most commonly prescribed opioid, however, the opioids prescribed differed significantly by site (p = 0.02) (). The median initial and final doses of opioid consumed were 10 mg (IQR = 5–20) and 20 mg (IQR = 7–45) oral morphine equivalents/day respectively, with no difference by site. The time from admission to initiation of an opioid (started on day 1, IQR = 0–5 days) or benzodiazepine (started on day 2, IQR = 0–7 days) or did not differ significantly between sites (). The prescription of an opioid was associated with having a documented goal of care as palliation (p < 0.0001), and prescription of a benzodiazepine was associated with having a documented goal of care as palliation (p < 0.0001) and referral to specialist palliative care (p < 0.0001). Hyoscine (71, 20.7%) and glycopyrronium (19, 5.5%) were also prescribed to reduce respiratory secretions.
Patients admitted during the last four years of the 12-year study period (2012–2015) were significantly more likely to receive opioids (OR = 5.1, 95%CI = 1.8–14.0, p = 0.002), receive benzodiazepines (OR = 8.9, 95%CI = 4.1–19.4, p < 0.0001), be referred to specialist palliative care (OR = 5.1, 95%CI = 2.7–9.4, p < 0.0001), and to have their goal of care documented as palliation (OR = 8.2, 95%CI = 3.6–18.6, p < 0.0001), when compared with patients admitted over the first 4 years of the study (2004–2007). Patients admitted in the middle four years of the study period (2008–2011) were more likely to be referred to specialist palliative care (OR = 2.0, 95%CI = 1.1–3.7, p = 0.031) when compared with patients admitted between 2004 and 2007, however, other elements of palliative care were not significantly different.
Discussion
In this large Australian study, respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission. However, few patients were referred to specialist palliative care and therapeutic interventions were continued for some until death. Whilst many aspects of end-of-life care varied significantly by hospital site, the overall adoption of a palliative approach for inpatients significantly improved over time. Nonetheless there were also significant missed opportunities to offer symptom palliation and palliative care in the years before death.
Terminal admission care
In addition to receiving therapeutic treatments, most patients received opioids and benzodiazepines, which were started promptly and with doses adjusted throughout the admission. Furthermore some treatments (such as oxygen therapy and NIV) that are usually given with therapeutic intent were purposefully continued until death with the documented aim being to provide symptom palliation. Therefore, the importance of palliating symptoms such as breathlessness, pain and psychological distress was understood. By comparison similar, but smaller, recent studies of COPD deaths in Taiwan (n = 91) and Australia (n = 34) identified that only 11–29% received opioids before death (Citation28, Citation29), with the duration of use being very short (Citation28).
During the admission recognition that death may occur or was imminent was high as most patients had a documented resuscitation status and their documented goal of care was changed to aim for comfort. Yet despite recognising that patients were actively dying, 12–25% received potentially burdensome therapeutic treatments and a few continued to receive long-term preventive treatments until death. Additionally, approximately one third of patients died in ICU, HDU, or RCU and a few died in the emergency department, yet such settings are deemed not ideal (Citation25). These results represent a significant improvement in end-of-life care compared with earlier studies from Taiwan and the United States, in which 67–70% of COPD patients died in ICU receiving multiple interventions including mechanical ventilation (Citation29, Citation30). Nevertheless there remains a reluctance to cease therapeutic treatments and move solely to measures aimed at providing comfort. This hesitance may relate to rapid clinical deterioration or clinicians’ and families’ concerns about ‘giving up’ on patients or taking away hope. Importantly, these concerns cannot be dismissed, as sometimes COPD patients do survive even when death is expected. Therefore given the challenge of accurately prognosticating in COPD, providing both non-burdensome therapeutic treatments together with a palliative approach is reasonable for some patients.
Small studies from the UK, Australia and Taiwan have demonstrated that 0–18% of COPD inpatients are referred to specialist palliative care teams during the final admission in which death occurs (Citation28, Citation29, Citation31). By contrast, in our study 29% were referred to specialist palliative care, with this occurring more frequently at RMH, where only the specialist palliative care team is permitted to manage palliative medications delivered subcutaneously. Importantly, whilst referral to specialist palliative care was low, a palliative approach (including prescribing palliative medications), was provided to most patients in this study by general or respiratory physicians. Indeed many guidelines recommend such an approach, with referral to specialist palliative care required for those patients with more complex or challenging symptoms or issues (Citation2, Citation3, Citation6, Citation9). Therefore, focussing only on specialist palliative care in research studies risks underestimating the quality and quantity of palliative care provided by other physicians to COPD patients. Nevertheless improved access to specialist palliative care services is required to support general physicians in providing a palliative approach, to facilitate communication regarding what palliative care is, and to enable patients with challenging symptoms or issues to access optimal care.
Whilst individual clinicians’ practices account for some of the geographical variation in end-of-life care, many practices (including outpatient opioid prescription for breathlessness, admission to high level care, use of NIV, referral to specialist palliative care and place of death) are explained by differing hospital policies and limited access in regional Australia to high level care beds, multidisciplinary specialist, respiratory and palliative care services, and inpatient palliative care units. These gaps in service provision highlight some of the many challenges regional physicians face in geographically vast countries like Australia.
Missed opportunities
The patients in this study were older, with multiple comorbidities, severe lung disease, and significant functional limitation, with over half requiring previous admissions for a respiratory illness. Additionally severe, chronic breathlessness was documented for two thirds of RMH patients, albeit no breathlessness score was recorded. Each of these characteristics is a well-recognised clinical predictor of poor prognosis (Citation32). Yet in the 2 years before death few patients accessed symptom palliation, ACP opportunities, or specialist palliative care, even though more than half the patients were attending outpatient appointments. Therefore, both the prognostic predictors and earlier opportunities to offer a palliative approach or specialist palliative care referral were missed. Notably this occurred equally at both sites, even though specialist palliative care is readily accessible at RMH. Similarly recent studies suggest that clinicians neither recognise the symptom of severe, chronic breathlessness nor the need for treatment (Citation33), and that there is a mismatch between self-reported practice managing chronic breathlessness and actual care delivered (Citation34). Therefore to avoid prognostic paralysis and under-treatment of distressing symptoms, referral to palliative care should be considered on the basis of individuals’ needs not clinicians’ estimates of prognosis (Citation3, Citation21, Citation35, Citation36).
Whilst improved access to specialist palliative care is needed in regional Australia (and in many countries), importantly clinician education regarding symptom palliation, communication skills and providing a palliative approach, as well as time in outpatient or primary care clinics to deliver such care are also required to address these missed opportunities. New models of integrated respiratory and palliative care, which routinely offer all patients with advanced disease both a palliative approach and disease-directed care led by the respiratory team, as well as access to specialist palliative care, may help address these issues. The Advanced Lung Disease Service at RMH is one such service and has demonstrated improved patient outcomes, with only 25% of patients cared for by the service dying in an acute hospital bed (Citation26). Notably, this explains why only nine Advanced Lung Disease Service patients were captured in this study of inpatient COPD deaths, and of those, four were admitted to and died in the RMH palliative care unit. Integrated services can also provide centralised education and support (from a distance) for regional physicians and general practitioners, thus overcoming limited access to specialist services in geographically vast countries.
Study limitations
Information regarding medical care received in the 2 years before death was limited to care provided at each study site. Therefore the number of previous patient admissions and outpatient contacts in the time before death may have been underestimated, with possibly even more missed opportunities to provide a palliative approach. Only patients with a diagnosis of COPD listed in one of the first five diagnoses at death were included. However, a subsequent sensitivity analysis, in which ‘any diagnosis of COPD’ listed at death was used instead of COPD in diagnosis 1–5, identified only a further two cases at RMH for inclusion in this study, revealing that the method used in this study captured nearly all relevant cases.
At NHW there were significantly more patients with no documented history of ever smoking (of whom four also had comorbid asthma) and significantly more asthmatics compared with RMH. Two separate sensitivity analyses were performed in which either all patients with no past smoking history, or all patients with coexisting asthma were removed, and the datasets re-analysed. For both sensitivity analyses there were no changes to the major overall results. Therefore, the differences in smoking history and comorbid asthma probably relate to medical record documentation quality not true differences in patient populations.
Conclusion
Respiratory and general physicians provided a palliative approach to the majority of COPD patients during their terminal admission. Whilst few patients were referred to specialist palliative care in the final admission, this may not have been required for some. Nonetheless there were also significant missed opportunities to offer symptom palliation and a palliative approach in the years before death, with patients in regional Australia facing greater challenges accessing specialist services.
Acknowledgements
We would like to thank Dr Claire Bartlett who collected some of the initial data for this study at RMH, and Dr Helen Haines and the University of Melbourne Department of Rural Health, (through the Commonwealth of Australia University Department of Rural Health Program) for providing logistical support for this study at NHW. Additionally, we thank Palliative Care Research Network for providing research funding as a PhD scholarship for Dr Natasha Smallwood and the Australian Commonwealth Government for support through the Australian Government Research Training Program.
Disclosure of interest
The authors report no conflicts of interest.
Additional information
Funding
References
- WHO. World Health Organisation. Definition of Palliative Care. 2002. http://www.who.int/cancer/palliative/definition/en/. Accessed March 2017.
- GOLD. Global initiative for chronic obstructive lung disease (GOLD). Global strategy for the diagnosis, management and prevention of COPD (2018 report). http://www.goldcopd.org.
- 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.
- NICE. National Institute of health and Care Excellence Clinical Guideline. Chronic obstructive pulmonary disease in the over 16s: diagnosis and management. 2010. http://www.nice.org.uk/guidance/cg101.
- Siouta N, van Beek K, Preston N, Hasselaar J, Hughes S, Payne S, et al. Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways. BMC Palliat Care. 2016;15:18.
- Yang I, Dabscheck E, George J, Jenkins S, McDonald C, McDonald V, et al. The COPD-X Plan: Australian and New Zealand Guidelines for the management of Chronic Obstructive Pulmonary Disease 2017. Version 2.52, December 2017. http://www.copdx.org.au.
- Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J. 2010;16(5):423–435.
- Palliative Care Australia. 2010. Primary health care and end of life position statement. http://palliativecare.org.au/wp-content/uploads/2015/08/PCA-Primary-Health-Care-and-End-of-Life-Position-Statement.pdf
- Palliative Care Australia. Service provision in Australia: a planning guide. 2003. 2nd edition. http://palliativecare.org.au/wp-content/uploads/2015/07/Palliative-Care-Service-Provision-in-Australia-a-planning-guide.pdf.
- Ecenarro PS, Iguiniz MI, Tejada SP, Malanda NM, Imizcoz MA, Marlasca LA, et al. Management of COPD in End-of-Life Care by Spanish Pulmonologists. COPD. 2018. doi:10.1080/15412555.2018.1441274
- Gaspar C, Alfarroba S, Telo L, Gomes C, Barbara C. End-of-life care in COPD: a survey carried out with Portuguese pulmonologists. Rev Port Pneumol. 2014;20(3):123–30.
- Hadjiphilippou S, Odogwu SE, Dand P. Doctors' attitudes towards prescribing opioids for refractory dyspnoea: a single-centred study. BMJ Support Palliat Care. 2014;4(2):190–192.
- Jabbarian LJ, Zwakman M, van der Heide A, Kars MC, Janssen DJA, van Delden JJ, et al. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices. Thorax. 2018;73(3):222–230.
- Janssen DJ, de Hosson SM, bij de Vaate E, Mooren KJ, Baas AA. Attitudes toward opioids for refractory dyspnea in COPD among Dutch chest physicians. Chron Respir Dis. 2015;12(2):85–92. doi:10.1177/1479972315571926.
- Lloyd-Williams M, Carter YH. In search of a good death: medical education has important role in extending palliative care. BMJ. 2003;327(7408):221–222.
- Mitchell GK, Reymond EJ, McGrath BP. Palliative care: promoting general practice participation. Med J Aust. 2004;180(5):207–208.
- Hanks GWC. Oxford textbook of palliative medicine. 4th ed. Oxford: Oxford University Press; 2011.
- Rush B, Hertz P, Bond A, McDermid RC, Celi LA. Use of palliative care in patients with end-stage COPD and receiving home oxygen: national trends and barriers to care in the United States. Chest 2017;151(1):41–46.
- Bloom CI, Slaich B, Morales DR, Smeeth L, Stone P, Quint JK. Low uptake of palliative care for COPD patients within primary care in the UK. Eur Respir J. 2018;51(2):1701879.
- Rosenwax L, Spilsbury K, McNamara BA, Semmens JB. A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on? BMC Palliat Care. 2016;15:46.
- Almagro P, Yun S, Sangil A, Rodriguez-Carballeira M, Marine M, Landete P, et al. Palliative care and prognosis in COPD: a systematic review with a validation cohort. Int J Chron Obstruct Pulmon Dis. 2017;12:1721–1729. doi:10.2147/COPD.S135657.
- Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011.
- Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–2392.
- Steer J, Gibson J, Bourke SC. The DECAF Score: predicting hospital mortality in exacerbations of chronic obstructive pulmonary disease. Thorax. 2012;67(11):970–976.
- Philip J, Lowe A, Gold M, Brand C, Miller B, Douglass J, et al. Palliative care for patients with chronic obstructive pulmonary disease: exploring the landscape. Int Med J. 2012;42(9):1053–1057. doi:10.1111/j.1445-5994.2012.02830.x.
- Smallwood N, Thompson M, Warrender-Sparkes M, Eastman P, Le B, Irving L, et al. Integrated respiratory and palliative care may improve outcomes in advanced lung disease. ERJ open research. 2018;4:00102–2017 doi:10.1183/23120541.00102-2017.
- Philip JA, Gold M, Sutherland S, Finlayson F, Ware C, Braithwaite M, et al. End-of-life care in adults with cystic fibrosis. J Palliat Med. 2008;11(2):198–203.
- Hyasat K, Sriram KB. Evaluation of the patterns of care provided to patients with COPD compared to patients with lung cancer who died in hospital. Am J Hosp Palliat Care. 2016;33(8):717–722.
- Chou WC, Lai YT, Huang YC, Chang CL, Wu WS, Hung YS. Comparing end-of-life care for hospitalized patients with chronic obstructive pulmonary disease and lung cancer in Taiwan. J Palliat Care. 2013;29(1):29–35.
- 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–S53.
- Tsim S, Davidson S. End-of-life care in a general respiratory ward in the United Kingdom. Am J Hosp Palliat Care. 2014;31(2):172–174.
- Hardin KA, Meyers F, Louie S. Integrating palliative care in severe chronic obstructive lung disease. COPD. 2008;5(4):207–220.
- Ahmadi Z, Sandberg J, Shannon-Honson A, Vandersman Z, Currow DC, Ekstrom M. Is chronic breathlessness less recognized and treated compared with chronic pain? A case-based randomised controlled trial. Eur Respir J. 2018;52(3). pii: 1800887. doi:10.1183/13993003.00887-2018.
- Smallwood N, Currow D, Booth S, Spathis A, Irving L, Philip J. Differing approaches to managing the chronic breathlessness syndrome in advanced COPD: a multi-national survey of specialists. COPD. 2018;11:1-9. doi:10.1080/15412555.2018.1502264.
- Maddocks M, Lovell N, Booth S, Man WD, Higginson IJ. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet. 2017;390(10098):988–1002.
- Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ. 2005;330(7492):611–612.