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Recent Advances in Chest Medicine |

Palliative Care in Advanced Lung DiseasePalliative Care in Advanced Lung Disease: The Challenge of Integrating Palliation Into Everyday Care FREE TO VIEW

Graeme M. Rocker, DM, MHSc, FCCP; A. Catherine Simpson, PhD, MDiv; Robert Horton, MD
Author and Funding Information

From the Division of Respirology (Dr Rocker), Implementing a Novel and Supportive Program of Individualized Care for Patients and Families Living With Respiratory Disease (INSPIRED) COPD Outreach Program (Drs Rocker and Simpson), and the Division of Palliative Medicine (Dr Horton), Capital Health Integrated Palliative Care, Halifax, NS, Canada.

CORRESPONDENCE TO: Graeme M. Rocker, DM, MHSc, FCCP, Dalhousie University/QEII Health Sciences Centre, # 4457 Halifax Infirmary, 1796 Summer St, Halifax, NS, B3H 3A7, Canada; e-mail: gmrocker@dal.ca


Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2015;148(3):801-809. doi:10.1378/chest.14-2593
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The tendency toward “either/or” thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients’ increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.

Figures in this Article

At the end of an editorial entitled, “Science Supporting the Art of Medicine: Improving the Management of Breathlessness,” Sara Booth, one of the United Kingdom’s most accomplished palliative care researchers, calls for “renewed confidence in what palliative care has always epitomized.”1 The traditional aims of palliative care are to relieve suffering and improve the quality of life for patients and families who live with advanced illness. This is accomplished through effective and empathetic communication with patients and family members; meticulous attention to addressing pain and other symptoms; psychosocial, spiritual, and bereavement support; and coordination of an array of medical and social services.2 These goals align well with the needs of patients and families living with advanced lung disease and especially those with COPD, and yet are seldom included in the standard approach to their care.

Practice leaders contend that when the need exists, palliative care can and should be a standard offering within regular medical practice.2 In the context of advanced chronic lung diseases such as COPD, professional society consensus statements and clinical practice guidelines36 have promoted more holistic, collaborative, and integrated approaches to care, including palliation. The 2012 American Thoracic Society’s update on the mechanisms, assessment, and management of dyspnea affirms that dyspnea, the cardinal symptom of lung disease, is responsible for approximately 50% of tertiary care center admissions.5 The financial costs related to acute care of dyspnea in the United States have been estimated at approximately $18 billion,7 and the human cost is also huge. Patients in the latter stages of advanced lung disease experience deterioration in symptoms and quality of life on a scope similar to those with advanced malignancy and compared with patients with lung cancer, experience greater escalation of dyspnea and global distress as the illness progresses and functional status deteriorates, but over a longer trajectory.8 These realities warrant significant changes to current models of care9 and provision of effective palliation if patients and families are to receive the comprehensive care they have requested, need, and deserve.10

Despite the recognized need, efforts to provide effective palliation often fall short for patients and families living with chronic respiratory disease.11 Extensive evidence attests to multiple unmet needs and a lack of access to specialized palliative care that could address those needs.8,12 The situation is even worse for patients living and dying with pulmonary fibrosis, who have received scant attention until recently.1315 This narrative review highlights some areas where particular attention is needed to advance the field of palliation for nonmalignant respiratory disease, with COPD as the major focus. The review includes the types of palliative care services that should be available, the rationale and outline for more effective advance care planning (ACP), strategies to reduce reliance on ED services, management of dyspnea crises, the safe use of opioids over the longer term, and proposed new models of care.

There is a clear distinction to be made between “specialist” palliative care, which provides multidisciplinary expertise plus team-based care within coordinated structured programs, and “primary” palliative care, which aims to integrate palliative approaches within the regular care plan to address unmet needs in the advanced stages of illness. Evidence is beginning to accumulate that in cases in addition to metastatic cancer,16,17 specialized palliative care can lead to improved outcomes.18,19

Specialist palliative medicine is conceptualized and practiced quite differently in the United States than in Canada and the United Kingdom. Much of the variation lies in the different opportunities and barriers inherent in socialized vs free-market health-care systems. In Canada and the United Kingdom, although national advocacy and professional organizations promote access to specialized palliative care for all patients with advanced illness, in practice, provision of palliative care continues to be rationed by prognosis because an insatiable demand outstrips current resources within a publically funded system. In contrast, in the United States, palliative medicine, the fastest-growing subspecialty in medicine,19 seeks an expanded role in all chronic illness to complement its traditional association with hospice and end-of-life care.

Some within the discipline would further specialize the role of palliative medicine in caring for patients with serious and advanced illness. However, the approach to care on which palliative medicine rests is actually fundamental to good medical care in general.20 Although there is clearly a place for specialized palliative care in more complex cases, a palliative approach to care based on need can and should be rewoven into the fabric of clinical care in all disciplines.20 Arguably, no other illness illustrates this more clearly than does COPD, which often exists within a context of complex comorbidity. Many patients and caregivers living with this illness become increasingly isolated because of progressive breathlessness and debility and have unmet needs arising from poor symptom control, unclear prognosis, inadequate ACP, and insufficient social and psychologic supports.21 An aging population and increasingly complex chronic illness burden factor into the rising demand for specialist palliative care support, and these demands cannot yet be adequately addressed by such a specialized model.22 In the case of COPD, a cohesive, patient-centered approach would need to be responsive to needs across the illness trajectory. This would mandate enhanced palliative competencies,22 as well as best practices for primary care and pulmonary medicine.2325 With appropriate mentorship and linkages, this type of team-based approach inclusive of a palliative approach to care can be achieved by disciplines outside specialized palliative medicine services.26,27 Providing expert support in the management of complex advanced cases of COPD would continue to be the purview of specialized palliative care, along with education and mentorship of colleagues in other disciplines.22,28

How best to integrate palliative care into the setting of advanced lung disease is more than an academic consideration. Randomized controlled trials of specialized palliative care in COPD are underway.29 To date, palliative care provision in this population has yet to be informed by the same quality of evidence that has accrued in the cancer setting. As others have noted, until various models and programs are implemented and evaluated rigorously, the “who, what, and how” of palliative care provision in this patient population will remain open to experimentation,20 and the profound vulnerability inherent in unmet needs will persist.

Many patients and caregivers living with advanced COPD experience significant vulnerability arising from low socioeconomic status and education levels, high comorbidity, and social isolation. In addition, they contend with constraints caused by dyspnea, immobility, and oxygen-related equipment, and a panoply of emotional, psychologic, and existential concerns related to loss of meaning/purpose and hope and fear of death. The social and medical stigma associated with this smoking-related disease, the symptoms of which are often invisible to observers, simply compounds the situation.10,3032 This situation has led one author to characterize these patients as the “disadvantaged dying.”33 Current models of care tend to give little attention to this vulnerability with its attendant psychosocial and spiritual suffering, despite professional guidelines30 and organizational commitments to patient-/family-centered care.30,34,35 Because this is embedded within a largely unpredictable, progressively downward trajectory, the current “either/or” thinking (either cure or comfort) of biomedical care paradigms results in costly gaps in care.3436 A more patient-/family-centered “both/and” model would be responsive to evolving patient and caregiver needs—emotional, social, and spiritual, as well as physical. Patient-/family-centered care has been defined as “a partnership among patients, families, and health care providers to design patient-specific education and support to assist in making decisions that are respectful of the patient’s needs and wishes.”37 A more collaborative, patient-centered approach inclusive of palliative care for those living with advanced COPD requires the facilitation of effective communication among patients, caregivers, clinical team members, and colleagues. One element of this is clarifying a patient’s goals of care through to end of life via a process of effective ACP.

Patients and caregivers living with advanced COPD are offered few opportunities to discuss goals of care even in the final stages, despite calls for more effective ACP.38,39 Research shows that many would welcome such discussions,31 that preferences recorded in medical charts are often discordant,40 and that simple strategies can be effective.41 If these conversations do occur, they are often reduced to a “code status” talk during a severe illness crisis. Frequently, this becomes a one-way doctor-to-patient presentation of the “facts” framed (often unconsciously) to encourage the decision the physician believes to be best.42 Although this may represent good clinical judgment in terms of an appropriate shift in goals of care, there is often a lack of communication to prepare the patient and caregivers for this shift, its implications, and associated decisions.43 In addition, the caregivers/decision-makers they delegate may not be invited or available to participate in this conversation and, thus, are not able to advocate on behalf of the patient and his/her care preferences.

In contrast to this last-minute, crisis-type decision-making, ACP is a more deliberate, organized, and ongoing process of communication to help an individual identify, reflect upon, discuss, and articulate values, beliefs, goals, and priorities to guide personal care decisions up to and including end-of-life care.44 Elements include a trained facilitator (not necessarily a physician) skilled in relational communication techniques; caregiver(s) and/or a delegate decision-maker; and attention to patient-related information needs, contextual factors, therapeutic relationships, and illness beliefs and readiness.45,46

Authentic ACP is about more than filling in a document and/or naming a delegate decision-maker, although it may include either or both of these elements. Evidence suggests that the discussion is equally or more important than any document arising from it.45,47

A skilled ACP facilitator can weave “care” throughout the interaction by eliciting patients’ illness experiences, especially unmet current care needs, seeking to understand their perspectives, exploring their fears and hopes, identifying and addressing meaningful uncertainties and suffering, engaging hope, and responding to current care needs by providing relevant, accessible information, psychosocial/spiritual support, and timely referrals as appropriate. In this way, ACP becomes an end in itself (one element in the regular care spectrum) rather than just a means to an end (personal directives or “code status”). Being committed to discovering patients’ hopes and fears and discussing ways to address these is key to creating an individually meaningful framework in which to ground the discussion of goals of care through to the end of life. This should include the question as to whether the use of any technology (eg, noninvasive ventilation and high-flow oxygen delivery systems) fits within these goals (e-Appendix 1). Conducting these discussions in patients’ homes whenever possible25 can enhance accessibility, comfort level, and the overall care experience.

Whenever these discussions occur, we should ensure that, as in any medical encounter, there is a necessary skill set that is acquired during medical training through effective mentorship and observation. The final step of sharing ACP insights with other team members involved in the broader supportive approach is necessary to bring about care more concordant with patients’ wishes.

In initiating an ACP discussion, the most important first step is to develop or build on an existing therapeutic relationship by

  • • Listening more than talking: what does the patient/carer want to talk about?

  • • Verbalizing empathy: follow up on emotion (eg, “You sound angry about that...”) and then seek insight into the emotion, where it is coming from, what it means (to the patient and/or carer)

  • • Seeking clarification or further information about things that are not clear to you

  • • Keeping in mind that the goal is not a final decision about code status, goals of care, or completing a document, but decisional readiness

  • • Facilitating understanding, reflection, and discussion so that the patient and/or his/her substitute decision-maker is able to make an informed choice as to his/her overall goals of care and care preferences

In the latter stages of lung disease, most patients are housebound by increasing frailty and breathlessness and are dependent on significant assistance from caregivers. Without adequate planning, many lack sufficient and proactive medical follow-up at home once they are no longer able to attend ambulatory primary care visits. Thus, to manage escalation of symptoms, they resort to episodic or emergent care through ED presentations.48 A retrospective analysis of ED use in the last months of life for > 4,000 patients > 65 years old in the United States revealed that more than one-half visited the ED in the 30 days before death, with one in 10 presenting to the ED on the last day of life. More than 40% made multiple visits during their last 6 months. In contrast, patients who enrolled in hospice programs rarely visited the ED in the last month of life.49

Many of those with high symptom burden in the latter stages of chronic illness would prefer to avoid the ED. Where care is fragmented, reactive, and hampered by diffusion of clinical responsibility across multiple care providers,11,24,50 patients have few alternatives. Without access to reliable alternative integrated models of care attuned to their needs,5154 patients and caregivers remain caught in a repeating cycle of ED presentation, hospital admission, and subsequent discharge back to the health-care system that initially failed them, only to await their next exacerbation or dyspnea crisis.

Dyspnea crisis has been defined as a sustained and severe resting discomfort in patients with advanced, often life-limiting, illness that overwhelms the patient and caregiver’s ability to achieve symptom relief.55 It is one of many factors that lead to intensive use of acute care resources in advanced lung disease. Any care plan that aims to reduce this pattern of reliance on reactive and emergent care must have an anticipatory individualized action plan. The American Thoracic Society document extends previous work in this area by other professional societies56 by providing some practical strategies and approaches, summarized as the COMFORT approach (Fig 1).55 Others have focused on the concept of episodic dyspnea, seeking consensus definitions and approaches.57 In any approach, action plans that help patients and families cope with dyspnea crises typically provide a written graduated course of interventions that begins with behavioral and nonpharmacologic interventions such as recovery positions and pursed lip breathing, progresses through the use of inhaled bronchodilators (where there is airflow obstruction) and careful titration of home oxygen (where indicated), and escalates to the use of opioids ± anxiolytics if intolerable symptoms persist.25

Figure Jump LinkFigure 1 –  The COMFORT approach is a “customizable caregiver plan for episodes of crisis dyspnea”55 that can be completed ahead of time following discussion between physician and family member. (Reprinted with permission from the American Thoracic Society.55)Grahic Jump Location

As symptoms become more advanced and episodic dyspnea crises more prevalent, sublingual fentanyl is a possible option. The research supporting its use for aborting dyspnea crises is sparse as yet, and, not surprisingly, the findings of a systematic review were neutral.58 In our experience, sublingual fentanyl (starting dose, 12.5-25 μg using 50 μg/mL IV preparation) can have positive effects for some patients (with rapid onset of action caused by absorption through mucous membranes), but recipients should be chosen carefully (it is not for use in opioid-naive patients) and their responses monitored closely. Other commercially available and high-dose preparations of fentanyl (designed for pain relief via buccal tablets/sprays) are too potent for dyspnea. The use of fentanyl in palliation was considered in detail in a recent review.59

Patients and caregivers tend to be more open to/less fearful of using opioids when previous treatment of crisis dyspnea has failed. Video footage of a daughter describing her and her mother’s experience with sublingual fentanyl can be found on the Kaiser Permanente website.60 Not unlike the situation in which patients have access to a “help line” via our community outreach program,25 just knowing help is close at hand (via opioids such as fentanyl) can reduce the levels of stress.

The options available to treat refractory dyspnea are well outlined elsewhere4,61,62 and are beyond the scope of this article. Nevertheless, there have been some important developments in our understanding of the use of opioids63 that merit further attention.

It would be quite understandable for patients and families to have concerns about taking a type of medication typically used for pain and long associated with death and dying. In contrast, in one study, patients who had taken an opioid to relieve dyspnea reported positive experiences, as did their family caregivers.64 This was in stark contrast to opinions expressed by numerous physicians, whose resistance to using opioids for dyspnea was related to legal challenges and professional approbation.64 There were similar findings in a study in the United Kingdom.65 To date, there have been two long-term observational trials in which the effects of opioids for refractory dyspnea in COPD have been assessed over months. Australian66 and Canadian67 trials have extended the findings of an earlier systematic review68 while providing safety data and confirming that carefully initiated, titrated, and monitored use of opioids can provide patients with significant relief from dyspnea over a longer term without undue side effects.67 In addition, when a “start low, go slow” approach was used and the patients were asked to rate 10 typical opioid side effects, none were rated worse than the symptoms experienced before starting opioids67 (Table 1). Patients found opioids to be a helpful adjunct to their conventional treatment and recommended this approach to others.67 More recently, a large population study from Sweden has suggested that there is no excess mortality when opioids are used in low doses (defined as < 30 mg oral morphine equivalent per 24 h).69 No other medications, including benzodiazepines, have yet been proven to be as effective for refractory dyspnea.70 The literature often focuses on the success or failure of individual pharmacotherapies in reducing dyspnea intensity. Although knowledge of and comfort and experience with the pharmacotherapy of refractory dyspnea are all important, we contend that the design and delivery of care has an equally profound impact on patient and caregiver experiences in the latter stages of illness.71

Table Graphic Jump Location
TABLE 1 ]  Comparison of Two Recent Observational Trials of Long-term Use of Opioids for Refractory Dyspnea Related to COPD

CRQ = Chronic Respiratory Questionnaire; CRQ-D = CRQ dyspnea domain; HRQoL = health-related quality of life; IQR = interquartile range; IR = immediate release; mMRC = Modified Medical Research Council; NRS = numerical rating scale; OD = once daily; SR = sustained release; VAS = visual analog score.

The Patient Centered Medical Home is one promising framework that seeks to transform the care of chronic illness from reactive to anticipatory care that encourages the primary care team to work collaboratively with patients and caregivers. The underlying framework promotes system redesign, optimization of clinical information systems, decision support for physicians, and patient self-management.53,54 Although no one model can claim superiority in overcoming the current deficiencies in care, there is evidence that strategies integrating at least two components of Wagner’s chronic care model are associated with significantly lower hospitalization rates, shorter lengths of stay, fewer ED/unscheduled visits, and decreased costs.72

We have reported elsewhere some preliminary findings from the Implementing a Novel and Supportive Program of Individualized Care for Patients and Families Living With Respiratory Disease (INSPIRED) COPD Outreach Program from Halifax, Nova Scotia.25 The latest published data26 suggest that a multidisciplinary outreach program with a focus on palliation across care transitions can support patients who wish to die at home. A home death from respiratory disease will often exceed the coping capacity of even the most committed family members. The complimentary skills of respiratory therapists, palliative medicine, and spiritual care practitioners enabled some patients to stay home longer before a shorter final admission (for those admitted to hospital).26 The many appreciative comments about INSPIRED in obituaries and correspondence (Table 2), plus occasional requests for the team spiritual care practitioner to conduct funerals (personal observation) attest to the positive impact of these outcomes. The INSPIRED approach to comprehensive support and practical community- and home-based palliation is currently being broadly implemented and evaluated by 19 teams taking part in a new pan-Canadian INSPIRED collaborative.26 Initiatives such as INSPIRED can respond to the many calls for the provision of a more “both/and” approach to effective palliation in concert with ongoing medical care for patients who live and die with advanced lung disease. Currently, effective care delivery continues to be hindered by deficiencies in continuity, communication, and collaboration among health professionals and by uncertainties about illness trajectory.

Table Graphic Jump Location
TABLE 2 ]  How INSPIRED Helps: Top Five Patient-Reported Reasons With Illustrative Quotes After INSPIRED26

INSPIRED = Implementing a Novel and Supportive Program of Individualized Care for Patients and Families Living With Respiratory Disease.

Overcoming these deficiencies through a “both/and” approach will require a commitment by professional societies and funders to support and sustain innovative approaches to care9,73 that include strategies to ensure effective palliation in advanced lung disease. Engaging patients and families in the assessment of respiratory distress,74 working with colleagues to accelerate the pace of uptake of new knowledge,75 and combining evidence-based medicine with quality-improvement initiatives26 are examples of a move away from traditional thinking. Although successful models of care may differ substantively based on variations in local medical culture, expertise, and resource availability, Table 3 proposes key components for successful delivery of palliative care in advanced lung disease.

Table Graphic Jump Location
TABLE 3 ]  Key Components of Integrated Palliative Care in Advanced Lung Disease

The prevalence of COPD is rising and more patients and families will live with the burdens of advanced or end-stage COPD. Models of care that use specific interventions and holistic approaches to care can improve patient and family outcomes. Some institutions and organizations will accomplish this by expanding their specialist palliative care services. For others, a more integrated approach (Table 3) will help patients and their families reach informed decisions about their care throughout the trajectory of COPD. Building palliative care capacity within primary care will be fundamental to any model seeking to provide more holistic, responsive, and sustainable care in advanced lung disease.22,76 In addition, we need to train generalists and pulmonologists in the core skills of symptom management, particularly dyspnea; communication; ACP; and care coordination. Intensive medical treatment focused on increasing survival and holistic, supportive, and palliative approaches focused on quality of life should not be mutually exclusive within the spectrum of care. There should simply be a change in emphasis over time.

Financial/nonfinancial disclosures: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Additional information: The e-Appendix can be found in the Supplemental Materials section of the online article.

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You JJ, Fowler RA, Heyland DK; Canadian Researcher at the End of Life Network (CARENET). Just ask: discussing goals of care with patients in hospital with serious illness. CMAJ. 2014;186(6):425-432. [CrossRef] [PubMed]
 
Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139(5):1081-1088. [CrossRef] [PubMed]
 
Heyland DK, Barwich D, Pichora D, et al; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173(9):778-787. [CrossRef] [PubMed]
 
Au DH, Udris EM, Engelberg RA, et al. A randomized trial to improve communication about end-of-life care among patients with COPD. Chest. 2012;141(3):726-735. [CrossRef] [PubMed]
 
Epstein RM, Peters E. Beyond information: exploring patients’ preferences. JAMA. 2009;302(2):195-197. [CrossRef] [PubMed]
 
Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-849. [CrossRef] [PubMed]
 
Simpson C. Advance care planning in COPD: care versus “code status”. Chron Respir Dis. 2012;9(3):193-204. [CrossRef] [PubMed]
 
Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-261. [CrossRef] [PubMed]
 
Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56(6):1006-1013. [CrossRef] [PubMed]
 
Fried TR, Bullock K, Iannone L, O’Leary JR. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57(9):1547-1555. [CrossRef] [PubMed]
 
Horton R. Reducing emergency room utilization in end-stage COPD - feasible or fantasy? Chron Respir Dis. 2013;10(1):49-54. [CrossRef] [PubMed]
 
Smith AK, McCarthy E, Weber E, et al. Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there. Health Aff (Millwood). 2012;31(6):1277-1285. [CrossRef] [PubMed]
 
Crawford GB, Brooksbank MA, Brown M, Burgess TA, Young M. Unmet needs of people with end-stage chronic obstructive pulmonary disease: recommendations for change in Australia. Intern Med J. 2013;43(2):183-190. [CrossRef] [PubMed]
 
Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: rethinking models of care. QJM. 2008;101(9):697-704. [CrossRef] [PubMed]
 
Booth S, Bausewein C, Rocker G. New models of care for advanced lung disease. Prog Palliat Care. 2011;19(5):254-63. [CrossRef]
 
Fromer L. Implementing chronic care for COPD: planned visits, care coordination, and patient empowerment for improved outcomes. Int J Chron Obstruct Pulmon Dis. 2011;6:605-614. [CrossRef] [PubMed]
 
Ortiz G, Fromer L. Patient-centered medical home in chronic obstructive pulmonary disease. J Multidiscip Healthc. 2011;4:357-365. [CrossRef] [PubMed]
 
Mularski RA, Reinke LF, Carrieri-Kohlman V, et al. An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis. Ann Am Thorac Soc.10(5):S98-S106. [CrossRef] [PubMed]
 
Mahler DA, Selecky PA, Harrod CG, et al. American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest. 2010;137(3):674-691. [CrossRef] [PubMed]
 
Simon ST, Weingärtner V, Higginson IJ, Voltz R, Bausewein C. Definition, categorization, and terminology of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Manage. 2014;47(5):828-838. [CrossRef] [PubMed]
 
Simon ST, Koskeroglu P, Gaertner J, Voltz R. Fentanyl for the relief of refractory breathlessness: a systematic review. J Pain Symptom Manage. 2013;46(6):874-886. [CrossRef] [PubMed]
 
Stanley TH. The fentanyl story. J Pain. 2014;15(12):1215-1226. [CrossRef] [PubMed]
 
Helping patients with advanced disease breathe easier: expert panel issues recommendations for ‘dyspnea crisis.’ Kaiser Permanente website. http://share.kaiserpermanente.org/article/helping-patients-with-advanced-disease-breathe-easier-expert-panel-issues-recommendations-for-dyspnea-crisis/. Accessed February 27, 2015.
 
Johnson MJ, Abernethy AP, Currow DC. Gaps in the evidence base of opioids for refractory breathlessness. A future work plan? J Pain Symptom Manage. 2012;43(3):614-624. [CrossRef] [PubMed]
 
Horton R, Rocker G. Contemporary issues in refractory dyspnoea in advanced chronic obstructive pulmonary disease. Curr Opin Support Palliat Care. 2010;4(2):56-62. [CrossRef] [PubMed]
 
Hallenbeck J. Pathophysiologies of dyspnea explained: why might opioids relieve dyspnea and not hasten death? J Palliat Med. 2012;15(8):848-853. [CrossRef] [PubMed]
 
Rocker G, Young J, Donahue M, Farquhar M, Simpson C. Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease. CMAJ. 2012;184(9):E497-E504. [CrossRef] [PubMed]
 
Hadjiphilippou S, Odogwu SE, Dand P. Doctors’ attitudes towards prescribing opioids for refractory dyspnoea: a single-centred study [published online ahead of print March 6, 2014]. BMJ Support Palliat Care. doi:10.1136/bmjspcare-2013-000565.
 
Currow DC, McDonald C, Oaten S, et al. Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage. 2011;42(3):388-399. [CrossRef] [PubMed]
 
Rocker GM, Simpson AC, Young J, et al. Opioid therapy for refractory dyspnea in patients with advanced chronic obstructive pulmonary disease: patients’ experiences and outcomes. CMAJ Open. 2013;1(1):E27-E36. [CrossRef] [PubMed]
 
Jennings AL, Davies AN, Higgins JP, Gibbs JS, Broadley KE. A systematic review of the use of opioids in the management of dyspnoea. Thorax. 2002;57(11):939-944. [CrossRef] [PubMed]
 
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. [CrossRef] [PubMed]
 
Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2010;20(1):CD007354.
 
Booth S, Moffat C, Burkin J, Galbraith S, Bausewein C. Nonpharmacological interventions for breathlessness. Curr Opin Support Palliat Care. 2011;5(2):77-86. [CrossRef] [PubMed]
 
Adams SG, Smith PK, Allan PF, Anzueto A, Pugh JA, Cornell JE. Systematic review of the chronic care model in chronic obstructive pulmonary disease prevention and management. Arch Intern Med. 2007;167(6):551-561. [CrossRef] [PubMed]
 
Booth S, Moffat C, Farquhar M, Higginson IJ, Burkin J. Developing a breathlessness intervention service for patients with palliative and supportive care needs, irrespective of diagnosis. J Palliat Care. 2011;27(1):28-36. [PubMed]
 
Campbell ML, Templin TN. RDOS-family: a guided learning tool for layperson assessment of respiratory distress. J Palliat Med. 2014;17(9):982-983. [CrossRef] [PubMed]
 
Abernethy AP, Kamal AH, Wheeler JL, Cox C. Management of dyspnea within a rapid learning healthcare model. Curr Opin Support Palliat Care. 2011;5(2):101-110. [CrossRef] [PubMed]
 
Murray SA, Firth A, Schneider N, et al. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29(2):101-111. [CrossRef] [PubMed]
 

Figures

Figure Jump LinkFigure 1 –  The COMFORT approach is a “customizable caregiver plan for episodes of crisis dyspnea”55 that can be completed ahead of time following discussion between physician and family member. (Reprinted with permission from the American Thoracic Society.55)Grahic Jump Location

Tables

Table Graphic Jump Location
TABLE 1 ]  Comparison of Two Recent Observational Trials of Long-term Use of Opioids for Refractory Dyspnea Related to COPD

CRQ = Chronic Respiratory Questionnaire; CRQ-D = CRQ dyspnea domain; HRQoL = health-related quality of life; IQR = interquartile range; IR = immediate release; mMRC = Modified Medical Research Council; NRS = numerical rating scale; OD = once daily; SR = sustained release; VAS = visual analog score.

Table Graphic Jump Location
TABLE 2 ]  How INSPIRED Helps: Top Five Patient-Reported Reasons With Illustrative Quotes After INSPIRED26

INSPIRED = Implementing a Novel and Supportive Program of Individualized Care for Patients and Families Living With Respiratory Disease.

Table Graphic Jump Location
TABLE 3 ]  Key Components of Integrated Palliative Care in Advanced Lung Disease

References

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Rocker GM, Verma JY. ‘INSPIRED’ COPD Outreach Program™: doing the right things right. Clin Invest Med. 2014;37(5):E311-E319. [PubMed]
 
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Duenk RG, Heijdra Y, Verhagen SC, Dekhuijzen RP, Vissers KC, Engels Y. PROLONG: a cluster controlled trial to examine identification of patients with COPD with poor prognosis and implementation of proactive palliative care. BMC Pulm Med. 2014;14(1):54. [CrossRef] [PubMed]
 
Goodridge DM, Marciniuk DD, Brooks D, et al. End-of-life care for persons with advanced chronic obstructive pulmonary disease: report of a national interdisciplinary consensus meeting. Can Respir J. 2009;16(5):e51-e53. [PubMed]
 
Reinke LF, Slatore CG, Uman J, et al. Patient-clinician communication about end-of-life care topics: is anyone talking to patients with chronic obstructive pulmonary disease? J Palliat Med. 2011;14(8):923-928. [CrossRef] [PubMed]
 
Simpson AC, Young J, Donahue M, Rocker G. A day at a time: caregiving on the edge in advanced COPD. Int J Chron Obstruct Pulmon Dis. 2010;5:141-151. [PubMed]
 
Exley C, Field D, Jones L, Stokes T. Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals. Palliat Med. 2005;19(1):76-83. [CrossRef] [PubMed]
 
Rocker GM, Young J, Simpson AC. Advanced chronic obstructive lung disease: more than a lung disease. Prog Palliat Care. 2009;17(3):117-125. [CrossRef]
 
Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: impact on informal caregivers. J Palliat Care. 2008;24(1):49-54. [PubMed]
 
Rocker GM, Sinuff T, Horton R, Hernandez P. Advanced chronic obstructive pulmonary disease: innovative approaches to palliation. J Palliat Med. 2007;10(3):783-797. [CrossRef] [PubMed]
 
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You JJ, Fowler RA, Heyland DK; Canadian Researcher at the End of Life Network (CARENET). Just ask: discussing goals of care with patients in hospital with serious illness. CMAJ. 2014;186(6):425-432. [CrossRef] [PubMed]
 
Janssen DJ, Spruit MA, Schols JM, Wouters EF. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139(5):1081-1088. [CrossRef] [PubMed]
 
Heyland DK, Barwich D, Pichora D, et al; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173(9):778-787. [CrossRef] [PubMed]
 
Au DH, Udris EM, Engelberg RA, et al. A randomized trial to improve communication about end-of-life care among patients with COPD. Chest. 2012;141(3):726-735. [CrossRef] [PubMed]
 
Epstein RM, Peters E. Beyond information: exploring patients’ preferences. JAMA. 2009;302(2):195-197. [CrossRef] [PubMed]
 
Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-849. [CrossRef] [PubMed]
 
Simpson C. Advance care planning in COPD: care versus “code status”. Chron Respir Dis. 2012;9(3):193-204. [CrossRef] [PubMed]
 
Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-261. [CrossRef] [PubMed]
 
Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56(6):1006-1013. [CrossRef] [PubMed]
 
Fried TR, Bullock K, Iannone L, O’Leary JR. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57(9):1547-1555. [CrossRef] [PubMed]
 
Horton R. Reducing emergency room utilization in end-stage COPD - feasible or fantasy? Chron Respir Dis. 2013;10(1):49-54. [CrossRef] [PubMed]
 
Smith AK, McCarthy E, Weber E, et al. Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there. Health Aff (Millwood). 2012;31(6):1277-1285. [CrossRef] [PubMed]
 
Crawford GB, Brooksbank MA, Brown M, Burgess TA, Young M. Unmet needs of people with end-stage chronic obstructive pulmonary disease: recommendations for change in Australia. Intern Med J. 2013;43(2):183-190. [CrossRef] [PubMed]
 
Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: rethinking models of care. QJM. 2008;101(9):697-704. [CrossRef] [PubMed]
 
Booth S, Bausewein C, Rocker G. New models of care for advanced lung disease. Prog Palliat Care. 2011;19(5):254-63. [CrossRef]
 
Fromer L. Implementing chronic care for COPD: planned visits, care coordination, and patient empowerment for improved outcomes. Int J Chron Obstruct Pulmon Dis. 2011;6:605-614. [CrossRef] [PubMed]
 
Ortiz G, Fromer L. Patient-centered medical home in chronic obstructive pulmonary disease. J Multidiscip Healthc. 2011;4:357-365. [CrossRef] [PubMed]
 
Mularski RA, Reinke LF, Carrieri-Kohlman V, et al. An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis. Ann Am Thorac Soc.10(5):S98-S106. [CrossRef] [PubMed]
 
Mahler DA, Selecky PA, Harrod CG, et al. American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest. 2010;137(3):674-691. [CrossRef] [PubMed]
 
Simon ST, Weingärtner V, Higginson IJ, Voltz R, Bausewein C. Definition, categorization, and terminology of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Manage. 2014;47(5):828-838. [CrossRef] [PubMed]
 
Simon ST, Koskeroglu P, Gaertner J, Voltz R. Fentanyl for the relief of refractory breathlessness: a systematic review. J Pain Symptom Manage. 2013;46(6):874-886. [CrossRef] [PubMed]
 
Stanley TH. The fentanyl story. J Pain. 2014;15(12):1215-1226. [CrossRef] [PubMed]
 
Helping patients with advanced disease breathe easier: expert panel issues recommendations for ‘dyspnea crisis.’ Kaiser Permanente website. http://share.kaiserpermanente.org/article/helping-patients-with-advanced-disease-breathe-easier-expert-panel-issues-recommendations-for-dyspnea-crisis/. Accessed February 27, 2015.
 
Johnson MJ, Abernethy AP, Currow DC. Gaps in the evidence base of opioids for refractory breathlessness. A future work plan? J Pain Symptom Manage. 2012;43(3):614-624. [CrossRef] [PubMed]
 
Horton R, Rocker G. Contemporary issues in refractory dyspnoea in advanced chronic obstructive pulmonary disease. Curr Opin Support Palliat Care. 2010;4(2):56-62. [CrossRef] [PubMed]
 
Hallenbeck J. Pathophysiologies of dyspnea explained: why might opioids relieve dyspnea and not hasten death? J Palliat Med. 2012;15(8):848-853. [CrossRef] [PubMed]
 
Rocker G, Young J, Donahue M, Farquhar M, Simpson C. Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease. CMAJ. 2012;184(9):E497-E504. [CrossRef] [PubMed]
 
Hadjiphilippou S, Odogwu SE, Dand P. Doctors’ attitudes towards prescribing opioids for refractory dyspnoea: a single-centred study [published online ahead of print March 6, 2014]. BMJ Support Palliat Care. doi:10.1136/bmjspcare-2013-000565.
 
Currow DC, McDonald C, Oaten S, et al. Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage. 2011;42(3):388-399. [CrossRef] [PubMed]
 
Rocker GM, Simpson AC, Young J, et al. Opioid therapy for refractory dyspnea in patients with advanced chronic obstructive pulmonary disease: patients’ experiences and outcomes. CMAJ Open. 2013;1(1):E27-E36. [CrossRef] [PubMed]
 
Jennings AL, Davies AN, Higgins JP, Gibbs JS, Broadley KE. A systematic review of the use of opioids in the management of dyspnoea. Thorax. 2002;57(11):939-944. [CrossRef] [PubMed]
 
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. [CrossRef] [PubMed]
 
Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2010;20(1):CD007354.
 
Booth S, Moffat C, Burkin J, Galbraith S, Bausewein C. Nonpharmacological interventions for breathlessness. Curr Opin Support Palliat Care. 2011;5(2):77-86. [CrossRef] [PubMed]
 
Adams SG, Smith PK, Allan PF, Anzueto A, Pugh JA, Cornell JE. Systematic review of the chronic care model in chronic obstructive pulmonary disease prevention and management. Arch Intern Med. 2007;167(6):551-561. [CrossRef] [PubMed]
 
Booth S, Moffat C, Farquhar M, Higginson IJ, Burkin J. Developing a breathlessness intervention service for patients with palliative and supportive care needs, irrespective of diagnosis. J Palliat Care. 2011;27(1):28-36. [PubMed]
 
Campbell ML, Templin TN. RDOS-family: a guided learning tool for layperson assessment of respiratory distress. J Palliat Med. 2014;17(9):982-983. [CrossRef] [PubMed]
 
Abernethy AP, Kamal AH, Wheeler JL, Cox C. Management of dyspnea within a rapid learning healthcare model. Curr Opin Support Palliat Care. 2011;5(2):101-110. [CrossRef] [PubMed]
 
Murray SA, Firth A, Schneider N, et al. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29(2):101-111. [CrossRef] [PubMed]
 
NOTE:
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).
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