Figures
- FIGURE 1
Literature search flow diagram.
Tables
- TABLE 1
Databases and websites searched
Databases searched Medline; CINAHL; PsycINFO; HMIC; AMED; Web of Science; ASSIA; IBSS; Delphis; PubMed; ScienceDirect; Cochrane Library; EMBASE; BNI; AgeInfo and Scopus. Websites Thorax Website; British Thoracic Society (BTS); National Institute For Health And Care Excellence (NICE); Medical Research Council (MRC); Department Of Health (DoH); Economic And Social Research Council (ESRC); National Institute For Health Research (NIHR); American Thoracic Association (ATS); British Lung Foundation (BLS); The National Council For Palliative Care (NCPC); The European Association For Palliative Care (EAPC); Association For Palliative Medicine (APM). - TABLE 2
Inclusion criteria of papers selected for review
Paper language Papers were included if written in English. The first language of all authors is English, therefore the inclusion of papers written in any other language would pose a barrier to thoroughly analyse the papers. Participants Participants included were people with COPD and healthcare professionals aged above 18 years old. COPD diagnosis should be done according with GOLD, in which a spirometry is performed showing a FEV1/FVC lower than 70%.
Papers were included if the sample represented 50% or more of patients with COPD, except if the papers were purposely comparing COPD with other diseases. Papers had to include approximately the same amount of COPD patients and patients with other conditions. A 10% margin was used to include or exclude papers. However, the 10% margin was only applied to the larger categories of patients with other diseases.Study design All study designs were included in the review. The main purpose of the review was to identify and analyse all data published regarding this subject. Therefore, all study designs were included. Study quality Papers were included if presented high or moderate quality. The inclusion of papers with low quality would contaminate the overall findings and conclusion of the review, leading to inaccurate and unreliable data. Country restriction Only papers from North America, Europe, Australia and New Zealand were included. This is thought relevant as literature from countries with different cultural believes towards health and from countries with small healthcare resources would not provide relevant and usable data for a European and North American society. Information presented in papers Papers were included if more than 50% of the information included was about palliative care conversations with COPD patients. This was done using word count. The papers excluded using this approach contained 30% or less of relevant information. Furthermore, the information contained in these papers did not present new information about the topic discussed. Intervention Conversations included were conversations about the topic “palliative care” between a person with COPD and a healthcare professional. Discussion topics Palliative care discussions addressed at least one of the following topics: “What are the patient's wishes and preferences for palliative and end of life care?”
“What is the patient's and clinician's understanding of palliative care?”
“What care can be offered to the dying patient?”
“What may the end of life care and/or death look like?”
“What may the future be like?”
“What are the patient's preferences for life-sustaining treatments?”
“How long does the patient have to live?”
“What is the desired place of death?”
“Who would the patient like to be present in the time of death?”
“What are the arrangements for after death?”
COPD: chronic obstructive pulmonary disease; GOLD: Global Initiative for Chronic Obstructive Lung Disease; FEV1: forced expiratory volume in 1 s; FVC: forced vital capacity.
- TABLE 3
Topics discussed during palliative care conversations
Rarely discussed topics Frequent topics The process of dying and the discussion of prognosis
Spiritual or religious beliefs
What dying might be like
How long the patient has to live
Getting sicker
Future treatment decisions
Preferences for life sustaining treatments, such as intubation, tracheostomy, oxygen, tube feeding, intravascular fluids and hospital care
The possibility of an intensive care unit admission
The intubation procedure
The patient's inability to speak or to eat while being ventilated
The likelihood of death if mechanical ventilation was not performed
The death rate associated with mechanical ventilation
- TABLE 4
Most common barriers and facilitators endorsed by patients and physicians
Patients Physicians Barriers Patients focused on staying alive [18, 21, 37]
Patients not certain of which doctor would be taking care of them [21, 37]
Patients do not know what kind of care they would want in the future [21, 37]
Limited understanding of palliative care and COPD [5, 29]
Denial of health status and of the possibility of dying [15, 18, 24]
Emotional distress of conversations and of palliative care [18, 29, 38]
Patients' readiness to discuss palliative care [37]
Lack of time in appointments to discuss all topics [18, 37]
Discussions may take away patients' hope [37]
Lack of feedback and documentation [18, 30, 40, 45]
Lack of thorough knowledge of the patient [3, 18]
Difficulty to start conversations and to choose the right time [3, 18, 22, 26, 30, 39, 40, 44, 45]
Difficulty for patients to understand and accept information in short periods of time [3, 29, 52]
Vision of palliative care as confined to the last days of life and exclusive of life sustaining treatments [29, 30]
Uncertainty to prognose in COPD [5, 18, 22, 39, 40, 45]
Reluctance of palliative care services to care for patients with COPD [29]
Complex discharge planning for COPD patients [18]
Facilitators Patients who had relatives or friends who had died recently [37]
Patients' trust in their physician [37]
Patients interpret physicians' skills as very good [37]
Patients' belief that physicians truly care about the patient [37]
Good patient-physician relationship [29, 37]
Physicians who cared for many patients with lung disease [37]
Physicians who care for patients with previous acute episodes [37]
COPD: chronic obstructive pulmonary disease.
Supplementary Material
Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.
Supplementary tables 00068-2016_supplementary_tables
Supplementary Material
T. Wilkinson 00068-2016_Wilkinson
