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While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD). For instance, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases, affirming that the prevention, relief, reduction and soothing of symptoms “without affecting a cure” must become an integral component of standard care. A recent Medline search located 1015 articles related to palliative or end-of-life care for people with COPD published between 2001 and 2008, compared with only 336 articles published before 2001. To address the needs of Canadian patients, an interdisciplinary consensus meeting, funded by the Canadian Institutes of Health Research and supported by the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Lung Association was convened in Toronto, Ontario, on November 22, 2008, to begin examining the quality of end-of-life care for individuals with COPD in Canada. The present report summarizes the background to and outcomes of this consensus meeting.
Si on a bien documenté les lacunes de nature systémique qui nous empêchent de répondre adéquatement aux besoins des personnes atteintes de maladie chronique progressive en fin de vie, on note un intérêt croissant pour l’amélioration des soins et de la qualité de vie des patients qui souffrent de maladie pulmonaire obstructive chronique (MPOC) avancée. Par exemple, l’American Thoracic Society a émis un énoncé de position officiel sur les soins palliatifs à l’intention des personnes atteintes de maladie respiratoire selon lequel la prévention, le soulagement, l’atténuation et l’apaisement des symptômes (« sans objectif de guérison ») doivent faire désormais partie intégrante des soins standard. Une récente interrogation de la base de données MEDLINE a permis de recenser 1 015 articles ayant trait aux soins palliatifs ou de fin de vie des personnes souffrant de MPOC publiés entre 2001 et 2008, comparativement à 336 articles seulement publiés avant 2001. Pour combler ce besoin au Canada, une réunion consensuelle pluridisciplinaire, rendue possible grâce aux Instituts de recherche en santé du Canada et appuyée par la Société canadienne de thoracologie, les Professionnels canadiens en santé respiratoire et l’Association pulmonaire, a eu lieu à Toronto, en Ontario, le 22 novembre 2008 pour amorcer une analyse de la qualité des soins palliatifs chez les personnes souffrant de MPOC au Canada. Le présent rapport résume l’historique et l’issue de cette réunion consensuelle.
While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well-documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD) (1). In fact, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases (2).
Individuals with advanced COPD experience poor quality of life and high levels of symptom burden typically including intractable dyspnea (3–7), fatigue (5,8–11), significant disability (4–6,9,12,13), social isolation (9,10,12–14), and high levels of anxiety and depression (4,11,15). The caregiving burden for family members of people with advanced COPD is significant (13,16–18), particularly given the lack of resources available to support individuals with chronic illness in the community (5,8,10).
In spite of the many unmet needs of patients with advanced COPD and their caregivers, disparities in access to specialized palliative care services at the end of life between patients with COPD and those with lung cancer have been widely reported (4,19,20). Reasons for these disparities include ‘prognostic paralysis’, in which clinicians of patients with uncertain illness trajectories (such as COPD) procrastinate when considering the need for palliative care services; patient unwillingness to discuss end-of-life care (21,22); provider discomfort with initiating end-of-life dialogues (21); lack of financial resources (23); and lack of clinicians with expertise in the management of nonmalignant disease (23). Finally, the relative lack of evidence regarding the impact of incorporating palliative approaches into the care of people with advanced COPD (20) suggests that significant gaps in our knowledge base and, hence, patient management, remain.
Calls for a new model of care for people with advanced COPD, in which comprehensive palliative approaches are embedded within standard respiratory care, are becoming increasingly frequent (2,24,25). The commitment to high-quality care at the end of life is underpinned by a responsibility to evaluate and improve this care. Quality indicators (explicitly defined and measurable items referring to the structures, processes or outcomes of care ) are one means by which to evaluate end-of-life care quality that have been previously used with cancer populations (27–29). The primary focus at the Canadian consensus meeting was to discuss the applicability, development and monitoring of indicators measuring the quality of end-of-life care for individuals with advanced COPD.
The impetus for organizing this meeting was provided by the work two of the authors (DG, DM) had previously undertaken using administrative data to examine health care use of people with COPD who were in their last 12 months of life. Funding for the meeting was secured through a Canadian Institutes of Health Research Meetings, Planning and Dissemination Grant. Along with representatives from the Canadian Lung Association, the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Hospice and Palliative Care Association (CHPCA), patients with COPD and their family members – an interdisciplinary, nationally representative group of professionals with an interest in end-of-life care for this population – were invited to participate in this initial one-day meeting.
Based on the findings of a preliminary Delphi survey conducted by DG (methodology and findings to be reported elsewhere) and designed to develop a draft of end-of-life care quality indicators for persons with COPD, a set of eight statements formed the basis for the group’s discussion. The initial statements were revised using consensus methods. Five statements (Table 1) emerged to reflect group opinion regarding critical process and outcome indicators of quality end-of-life care for individuals with advanced COPD (Table 2).
Participants at the meeting agreed to move forward with an agenda to enhance end-of-life care for people with advanced COPD. Strategies to accomplish this goal were identified and include validating the indicators emerging from this meeting with patients and families across the country, developing a national position statement on end-of-life care for this population, collaborating with the CHPCA to enhance training of respiratory professionals in end-of-life care using an established workshop format, promoting joint initiatives between respiratory professionals and the CHPCA, exploring the possibilities of purchasing items on representative national surveys that reflect lung health concerns and working toward monitoring selected key indicators on a national basis. To continue work on these initiatives, a Respiratory End-of-life Care Collaborative Group will be developed. Interested individuals may contact Donna Goodridge at email@example.com for further information regarding activities of the group.
Donna Goodridge is a Canadian Institute of Health Research/RPP New Investigator. Darcy Marciniuk is a Lung Association of Saskatchewan COPD Professor. Dina Brooks is a Research Chair in Rehabilitation in COPD. Shelly Hutchinson holds a Canadian Respiratory Health Professionals Graduate Student Fellowship.
FUNDING: Funding for this meeting was provided through a Canadian Institutes of Health Research Meetings, Planning and Dissemination Grant.