End-of-life care for persons with advanced chronic obstructive pulmonary disease : Report of a national interdisciplinary consensus meeting

1College of Nursing; 2College of Medicine, University of Saskatchewan, Saskatoon, Saskatchewan; 3Department of Physical Therapy, University of Toronto, Toronto, Ontario; 4Canadian Lung Association, Ottawa, Ontario; 5School of Nursing, Laurentian University, Sudbury, Ontario; 6Canadian Hospice and Palliative Care Association, Ottawa, Ontario; 7Faculty of Medicine, McMaster University, Hamilton, Ontario; 8École de service social, Université Laval, Québec City, Québec; 9Medigas, Hamilton,Ontario; 10Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia; 11Faculty of Nursing, University of Alberta, Edmonton, Alberta; 12Programme Extra-Mural Program, Atlantic Health Services Corporation, Saint John, New Brunswick` Correspondence: Dr Donna M Goodridge, College of Nursing, Room 423 Ellis Hall, Royal University Hospital, Saskatoon, Saskatchewan S7N 0W8. Telephone 306-966-1478, fax 306-966-6703, e-mail donna.goodridge@usask.ca 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 endof-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. oRiginal aRticlE

W hile systemic shortcomings in meeting the needs of indi- viduals 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).
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 endof-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.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-oflife 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.
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 highquality 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 [26]) are one means by which to evaluate end-of-life care quality that have been previously used with cancer populations (27)(28)(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.

MEEtinG OutCOMES
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).

FutuRE PlanS
Participants at the meeting agreed to move forward with an agenda to enhance end-of-life care for people with advanced Clinicians should ensure that end-of-life care planning (which may include the completion of advance directives) occurs in a culturally safe manner for all patients • with serious illness.End-of-life care planning should include dialogue about surrogate decision-makers, resuscitation, emergency treatment (including intubation) and ongoing mechanical ventilation, and be initiated as early as possible in the course of the illness before the end of life (American College of Physicians) End-of-life care planning may be initiated at diagnosis, if appropriate, to the patient's circumstances.Additional triggers for end-of-life care planning include • situations in which there is serious impairment of functional status, the patient is asking questions salient to the end of life or when the provider would not be surprised if the patient died in the following 12 months The topic of end-of-life care planning should be first introduced by the health care provider most trusted by the patient, although physician involvement in the • decision-making process is crucial.Families and significant others play a pivotal role in planning for the end of life of people with advanced COPD.The involvement of and ongoing dialogue with family members and significant others in end-of-life care planning needs to be strongly encouraged by providers

Anticipating the need for end-of-life care
While accurate prediction of the trajectory of decline for a given individual with advanced COPD is challenging, the primary indicators that the patient is • approaching the end of life are: a) poor functional status (Medical Research Council dyspnea scale 4 to 5); b) severe acute exacerbation; c) FEV 1 less than 30% predicted; d) signs of respiratory failure or pulmonary hypertension; e) body mass index of less than 20 kg/m 2 ; or f) the patient is starting to wish for or talk about death.Deteriorating psychosocial/cognitive status and a pattern of increasing health care utilization are also useful indicators.Ongoing and focused monitoring (including the use of functional status scales such as the Palliative Performance Scale and the Bode Index) have prognostic value and should be used in both inpatient and home care settings

Advocating for patient and caregiver preferences as to the site of end-of-life care
The specific location of both care and death is less important for persons with advanced COPD than implementing end-of-life care in a setting of their choice that • accommodates both the patient's and caregiver's unique needs and preferences.The ability to access both inpatient and home support is a critical indicator of the quality of end-of-life care for people with advanced COPD.Alternative settings such as day hospices that may supplement care and relieve caregiver burden need to be explored

Optimizing interdisciplinary team care
End-of-life care is optimized through continuity of direct care providers and access to an interdisciplinary team.Knowledgeable family physicians, nurse • practitioners and case managers are the foundation of quality end-of-life care.Family physicians and home care teams should have access to the resources of both respiratory disease specialists and palliative care teams Enhanced collaboration among respiratory care providers and palliative care services will optimize quality of care.While palliative care specialists have an • important role in consulting to provide symptom management, family physicians, respiratory specialists and home care providers must be trained to provide quality end-of-life care.Patients and families need clarification about the roles of each team member Specific initiatives designed to optimize end-of-life care for people with advanced COPD must be evaluated.These initiatives include 24 h emergency response • teams for community-based patients (including same-day in-home response), dedicated case managers, system navigator models, rapid access to respite and palliative care beds in nursing homes and hospitals, and access to outpatient symptom management clinics.A strong evidence base, generated by high-quality research for best practices in end-of-life care for this population, must be supported by appropriate and sustainable funding

Selecting interventions for patients with advanced COPD
Subjective symptom assessments (eg, Edmonton Symptom Assessment Scale) need to be routinely conducted in a consistent manner.• Symptom control is the most critical indicator of quality of end-of-life care.For this population, the symptoms of dyspnea, pain, depression, fatigue, anxiety and fear must be considered • Both system and patient-centred measures provide additional information about how well we are caring for people dying from advanced chronic obstructive pulmonary disease.These include measures of: • Continuity of care; • Informal caregiver burden; • Patient and family satisfaction with care; • Quality of life during the months or years the person is living with advanced disease; and • Timely, accurate communication between patients, caregivers and providers.Further investigation must occur to determine how to best measure each of these indicators and how to incorporate them into practice Inc.All rights reserved DM Goodridge, DD Marciniuk, D Brooks, 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.

End of life care for persons with advanced COPD
Multidisciplinary • interventions must address the whole person and include psychosocial, spiritual and existential dimensions.Screening for depression, fatigue, anxiety and caregiver burden, as well as appropriate interventions to alleviate these concerns, are critical.The use of opioids to manage dyspnea at the end of life may be a beneficial intervention.Interventions designed to enhance exercise tolerance, nutritional status or treat infection must be considered 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.aCKnOWlEDGEMEnt: