A patient-centred interdisciplinary palliative care ...

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A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases Daisy JA Janssen, Martijn A Spruit, Ton PG Alsemgeest, Joan D Does, Jos MGA Schols, Emiel FM Wouters

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he palliative care needs of patients with end-stage respiratory diseases are increasingly being recognized (Curtis, 2008; Lanken et al, 2008). Indeed, Gore et al (2000) have shown that the general health status of patients with severe chronic obstructive pulmonary disease (COPD) is worse than in patients with inoperable non-small cell lung cancer. Furthermore, COPD patients suffer from multiple symptoms at the end of life, which are often poorly addressed (Edmonds et al, 2001; Elkington et al, 2005). There is also evidence that COPD patients more frequently suffer from symptoms of anxiety and/or depression than lung cancer patients (Gore et al, 2000). In 2008, the Official American Thoracic Society published the Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses (Lanken et al, 2008). This states that palliative care for patients with respiratory diseases should begin when a patient becomes symptomatic, and needs to be offered concurrent to restorative and life-prolonging care. Palliative care should be titrated to meet the needs of the patient and family according to their preferences, and all patients with symptomatic or life-threatening respiratory diseases should have access to palliative care (Lanken et al, 2008). While COPD is a major cause of mortality world wide (Murray and Lopez, 1997), in the Netherlands only 3% of the patients admitted to hospice care suffer from COPD, while the majority of patients have been referred because of cancer (Mistiaen, 2006). Furthermore, only 0.9% of the consultations performed by palliative care teams concerned COPD patients, while 90.5% of palliative consultations were performed for cancer patients (Kuin et al, 2004). A recent survey of 239 acute hospital units admitting COPD patients in the United Kingdom has shown that only 49% of units had a formal referral pathway for palliative care, and only 13% of these units had a policy of providing information about palliative care to patients with severe COPD (Buxton et al, 2010).

International Journal of Palliative Nursing 2010, Vol 16, No 4

Abstract Palliative care should be part of integrated care for patients with endstage respiratory diseases. An intensive inpatient interdisciplinary palliative care programme has been developed for patients with endstage respiratory diseases in the Netherlands. This programme consists of the management of daily symptoms and care needs to support patients and their families, and maintain or improve quality of life of these patients and their loved ones. This article presents case studies which describe the clinical course and management of three patients admitted to the programme: a 77-year-old woman who died from chronic obstructive pulmonary disease (COPD); a 60-year-old woman with end-stage COPD who improved her daily functioning and was discharged home after 3 months; and a 74-year-old woman who died of pulmonary fibrosis. This article describes the characteristics of the programme and shows the possible benefits of an intensive patient-centred interdisciplinary palliative care programme for patients with end-stage respiratory diseases. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction and quality of dying. Keywords: ● Palliative care ● End-of-life care ● Chronic respiratory diseases ● Chronic obstructive pulmonary disease ● Pulmonary fibrosis ● Hospice In addition, Partidge et al (2009) found that only 21.5% of the chest physicians in the UK have formal policies in place for care of patients with end-stage chronic respiratory disease, and 87.9% of the chest physicians had no formal process for initiating end-of-life discussions. A study of bereaved relatives found that patients dying in a hospice received the most effective symptom treatment, but also that non-cancer patients in their last 3 months of life were less likely to receive effective symptom control or to receive support from palliative care services compared to cancer patients (Burt et al, 2010). A retrospective cohort study performed in the United States regarding health care use at the end of life among patients with COPD and lung cancer shows that COPD patients were less likely to receive palliative medication and were more likely to be admitted to the intensive care unit than lung

Daisy JA Janssen1,2,3 is Nursing Home Physician and Palliative Care Consultant; Martijn A Spruit1 is Staff Functionary; Ton PG Alsemgeest3 is Nursing Home Physician and Manager; Joan D Does1 is Medical Doctor; Jos MGA Schols4 is Pofessor of Nursing Home Medicine; Emiel FM Wouters1,5 is Professor of Respiratory Medicine. 1Programme development Centre, Ciro, Centre of Expertise for Chronic Organ Failure, 2 CAPHRI, Maastricht University, 3Proteion Thuis, 4 Department of General Practice, Nursing home medicine, Faculty of Health Medicine and Life sciences/ CAPHRI, Maastricht University, 5Department of Respiratory Medicine, Maastricht University Medical Centre+, the Netherlands

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{All patients with symptomatic or lifethreatening respiratory diseases should have access to palliative care ❜

cancer patients (Au et al, 2006). The number of hospital admissions and length of stay in the hospital for COPD patients has been shown to increase considerably towards the end of life (Andersson et al, 2006). This may suggest that care for patients with end-stage chronic respiratory diseases is mainly focused at prolongation of life, and that patients with end-stage chronic respiratory diseases have unmet palliative care needs. The following barriers to palliative care for patients with chronic respiratory diseases have been identified (Yohannes, 2007; Hardin et al, 2008; Spence et al, 2008): Misperception of palliative care as synonymous with end-of-life care Difficulty in accurate prediction of prognosis of survival Lack of appropriate guidelines for when to refer patients to palliative care Impaired patient-physician end-of-life care communication and lack of advance care planning Health care financing policies Lack of palliative care resources. While previous authors have shown that the palliative care needs of patients with chronic respiratory diseases are not being met (Gore et al, 2000; Edmonds et al, 2001; Partridge et al, 2009, Burt et al, 2010; Au et al, 2006), the possibilities of a specialized palliative care programme for these patients have not been described before. This article describes the programme characteristics and possible benefits of an intensive patientcentred interdisciplinary palliative care programme for patients with end-stage chronic respiratory diseases.

Programme characteristics An advance care unit for patients with end-stage respiratory diseases has been developed by close collaboration of a nursing home and pulmonary rehabilitation centre in the south-east of the Netherlands to address the palliative care needs of patients with end-stage respiratory diseases. An inpatient interdisciplinary palliative care programme, which consists of the management of daily symptoms and care needs is offered to support patients and their families with endstage chronic respiratory diseases, and maintain or improve quality of life of these patients and their loved ones. Patients admitted to this advance care unit suffer from end-stage respiratory diseases leading to severe impairments in activities of daily living, have an impaired disease-specific health status, and often experience psychosocial distress. Most patients have participated in a comprehensive inpatient pulmonary rehabilitation

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programme earlier in the course of their disease (Spruit et al, 2008). For each patient, based on a structured interdisciplinary care pathway, a palliative care programme is developed, tailored to the individual health status, care needs and preferences of the patient and his or her loved ones. This palliative care programme is frequently evaluated and optimized by the interdisciplinary management team in the presence of the patient and loved ones. The interdisciplinary management team consists of a palliative care physician, chest physician, nurses, physiotherapist, occupational therapist, dietician, speech and language therapist, psychologist, social worker, art therapist and pastor. Since the start of the programme in 2005, 81 patients have followed the palliative care programme (Table 1). Most patients (90.1%) have been admitted because of COPD (70 patients Global initiative for chronic Obstructive Lung Disease (GOLD)-stage IV (95.9%); three patients GOLD-stage III (4.1%)). For 56 patients (69.1%) the admission to the palliative care centre immediately followed an inpatient pulmonary rehabilitation programme (Spruit et al, 2008). At admission to the palliative care programme, patients experienced dyspnoea at minimal exertion and sometimes at rest. Ten patients have been admitted to the programme twice.

Case studies Mrs H In February 2007, Mrs H was admitted to the advance care unit because of end-stage COPD. She had suffered from COPD since 2001. Her forced expiratory volume in the first second (FEV1) was 31% of predicted values and she used long-term oxygen therapy because of chronic respiratory failure. A year before referral to the palliative care programme she had decided to refuse resuscitation or invasive mechanical ventilation. Before admission to the advance care unit, she participated in a comprehensive inpatient pulmonary rehabilitation programme, which was complicated by multiple respiratory tract infections and exacerbations of her COPD. At admission she was 77 years old, had a frail health status and required help with almost all tasks of daily living. However, she hoped that physiotherapy and occupational therapy would enable her to be discharged home, to cross the street to the house of her best friend and to perform some daily household tasks like doing laundry and dressing the bed. She expressed that acceptance of her disease, and most of all, the increasing dependency on others, was difficult for her. She had experienced problems with bereave-


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ment after the sudden death of one of her daughters, 9 years previously. An interdisciplinary palliative care programme was offered to her, consisting of physiotherapy aimed at improving strength and exercise tolerance; occupational therapy aimed at reducing her dependency in tasks of daily living; speech and language therapy aimed at reducing dyspnoea during eating and speaking; and treatment by a dietician, aimed at improving her nutritional status. She was treated by the enhanced art therapist, because of problems with adjustment to the disease and problems with bereavement. The aim of art therapy was to provide emotional support, providing an environment in which she could express her thoughts and feelings, and facilitate emotional expression (Doyle, 2004). Despite this intensive interdisciplinary palliative care programme, she experienced a gradual decline in physical functioning, punctuated by multiple severe infections/exacerbations of her COPD. It became clear to her that discharge home was not possible anymore and she expressed her wish to stay in the palliative care centre. She felt safe and supported and was afraid of going home. She enjoyed all activities on the ward and most of all the daily visits of her daughter. For the first time in years, her daughter felt that she could leave her mother without being afraid of a medical emergency. The stay in the advance care unit prevented multiple hospital admissions, which would have been necessary if she had been living at home. After each exacerbation of her COPD, her health status was more impaired than before. Nevertheless, during each exacerbation she expressed her wish to survive that exacerbation. In January 2008, just a few weeks after a previous respiratory tract infection, Mrs H again deteriorated, and she expressed that she was ready to die, saying: ‘my deceased daughter is waiting for me’, and she only wished to have symptomatic treatment. She was provided with terminal care. Her medication was reassessed and non-essential medication was discontinued. Her dyspnoea was effectively treated with 30 mg morphine a day, by continuous subcutaneous infusion. She died a few days later, peacefully, in the presence of her daughter.

Mrs J Mrs J had suffered from COPD since 1991 and was admitted to the advance care unit in May 2009. At admission she was 60 years old. In 2007 her FEV1 was 24% of predicted values. Mrs J had participated in a pulmonary rehabilitation programme five times previously (1996; 2002; 2004; 2006 and 2007) (Spruit et al, 2008). She had been


using non-invasive positive pressure ventilation (NPPV) since 2007. She had also previously decided to forego invasive mechanical ventilation in case of acute respiratory failure. At admission to the advance care unit, her husband was already staying in the advance care unit because of endstage COPD, and living alone was not possible for her. Her daughter needed to stay in her house to care for her, and the burden of care became too much. At admission she was mainly bed-bound and was only able to walk a few steps. She was using NPPV almost continuously. The removal of the NPPV-mask provoked anxiety and severe dyspnoea. She suffered from dyspnoea at rest, which increased during every activity. Mrs J was offered an interdisciplinary palliative care programme focused on improving her daily functioning. She was treated by the physiotherapist with transcutaneous neuromuscular electrical stimulation of lower-limb muscles, endurance training (interval) and resistance training of large muscle groups of upper and lower extremities. Her walking distance improved until she was able to walk 119 metres within 6 minutes. She was supported in decreasing the use of NPPV. At discharge she was using NPPV for about 16 hours a day and was able to use long-term oxygen therapy instead of NPPV without deterioration of her blood gases or symptoms of dyspnoea or anxiety. This enabled her to have social contacts and she enjoyed social activities. She was still dyspnoeic at minimal exertion, but not at rest any more. She was trained in using her electric wheelchair by the occupational therapist and was enjoying going outside by herself. In addition, the occupational therapist provided her with advice regarding energy conservation and activity efficiency techniques, aimed at reducing her dependency in tasks of daily living. At discharge she needed help with showering, but was able to perform other activities of personal care by herself. The social worker supported her with practical aspects of home care after discharge. She was discharged home, to be with her husband, 3 months later.

{The stay in the advance care unit prevented multiple hospital admissions ❜

Mrs G Mrs G was 74 years old when she was admitted to the advance care unit in April 2008. She was diagnosed with pulmonary fibrosis in 2005, and had a stroke in 2008, since which she experienced difficulties with swallowing and was afraid of aspiration. Her health status had declined in the last year. Before admission to the advance care unit Mrs G followed an inpatient pulmonary rehabilitation programme, but was not able to adhere to her training programme. She was living alone and

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Table 1. General characteristics of patients admitted to the programme (n=81) Age (years), mean (SD)

66.1 (11.9)

Gender (male), n (%)

43 (53.1%)

Reason for admission

n (%)

COPD

73 (90.1%)

Pulmonary fibrosis

4 (5%)

Chronic heart failure

1 (1.2%)

Lung cancer

2 (2.5%)

Lymphangioleiomyomatosis

1 (1.2%)

Dyspnoea at minimal exertion

79 (97.5%)

Dyspnoea at rest

24 (29.6%)

Length of stay (days), median (IQR)

117 (54-232)

Outcome

n (%)

Deceased

26 (32.1%)

Discharged home

32 (39.5%)

Discharged to residential home

10 (12.3%)

Discharged to nursing home

8 (9.9%)

Discharged to pulmonary rehabilitation programme

2 (2.5%)

Lung transplantation

3 (3.7%)

only had a niece who cared for her. At admission to the advance care unit she expressed her wish to die and asked for euthanasia. Mrs G suffered from severe dry coughing. She also experienced dyspnoea at minimal exertion and sometimes at rest, leading to symptoms of anxiety. She complained of nausea and loss of appetite, which impaired her quality of life. Her body mass index at admission was 18.2 kg/m2 and she refused to use nutritional supplements or tube feeding. She was able to walk small distances using a rollator. Mrs G needed help with activities of daily living and experienced difficulties with accepting the help and support she needed. Because of her fear for aspiration and difficulties with swallowing, taking her medication was very stressful. Although it was clear that she was suffering, her request for euthanasia could not be fulfilled because palliative care was expected to decrease her suffering and improve her quality of life, and she agreed with a palliative approach to her problems. Her medication was reassessed, the number of drugs was reduced and tablets were changed in liquids, where possible. She started with morphine subcutaneously via a butterfly needle to treat her dyspnoea and coughing, together with laxatives to prevent constipation (Spruit et al, 2009). Her dosage of morphine

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was titrated to her needs and with morphine 15 mg subcutaneously a day, her dyspnoea and coughing were effectively treated. Because anxiety appeared to be a main component of her dyspnoea, the dosage of alprazolam, which she already used, was raised to 0.25 mg four times a day. The dietician focused on palliative treatment aimed at improving her appetite and on enjoying meals instead of improving her nutritional status. In addition, the speech and language therapist provided her with advice regarding her problems with swallowing. The psychologist addressed her anxiety and problems with accepting the help that she needed. In addition, she discussed with her physician her fear of suffocating, and possibilities for palliative care in case of severe dyspnoea. Advance directives were discussed and documented. Mrs G soon started to feel better. Her appetite improved. Gradually, she more easily accepted the help from the nurses she needed with daily care. Her wish to die disappeared and she enjoyed her stay in the advance care unit. In October 2008 she developed a respiratory tract infection, and after a few days of treatment with antibiotics she suddenly deteriorated and only wished to receive symptomatic treatment. At that time she suffered from severe dyspnoea, anxiety and nausea. Her medication was changed to subcutaneous administration of morphine 30 mg in combination with midazolam 15 mg and haloperidol 2.5 mg a day. She died quietly in the presence of her niece, 6 months after referral to the advance care unit.

Discussion The disease trajectory of patients with end-stage respiratory diseases requires titrating palliative care to the needs of patients, concurrently with curative-restorative treatment (Lanken et al, 2008). Therefore, palliative care should not be restricted to terminal care (Curtis, 2008). Palliative care should be part of integrated care for patients with end-stage respiratory diseases. The case studies presented here suggest that palliative care needs of patients with end-stage respiratory failure may be addressed with a patient-centred interdisciplinary palliative care programme. The case of Mrs H demonstrates that an inpatient palliative care programme for patients with end-stage respiratory diseases may support maintaining quality of life for a longer period, despite a gradual decline in health status and multiple exacerbations. The advance care unit provided an environment in which she felt safe and at home and prevented multiple hospital admissions in her last year of life. The case of Mrs J demonstrates that


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for a frail patient with end-stage chronic respiratory disease, who is not able to participate in a pulmonary rehabilitation programme, an inpatient palliative care programme may improve health status, decrease burden of care giving for family caregivers, alleviate daily symptom burden and thereby provide the opportunity to be discharged home again with an acceptable level of daily functioning. The case of Mrs G demonstrates that for a patient with end-stage pulmonary fibrosis who is not able to participate in a pulmonary rehabilitation programme, an inpatient palliative care programme may diminish daily symptom burden, may improve quality of life in the last months of life and may achieve acceptable quality of dying. The present inpatient palliative care programme for patients with end-stage respiratory diseases pays attention to several dimensions of palliative care. First, daily symptom burden is likely to be high in patients with end-stage respiratory diseases (Janssen et al, 2008; Blinderman et al, 2009; Spruit et al, 2009) and therefore assessment and adequate management of daily symptoms is the cornerstone of this palliative care programme. In addition, psychosocial distress is highly prevalent in end-stage respiratory diseases and needs to be addressed (Singer et al, 2001; Kunik et al, 2005). Furthermore, attention needs to be paid to closest relatives and family caregivers. Caring for a loved one with COPD has been shown to impose a considerable stress on family caregivers (Pinto et al, 2007). In addition, research has shown unmet needs for information regarding the course of the disease (Elkington et al, 2005), and unmet needs in terms of support with physical care and symptom control (Currow et al, 2008). Finally, an important part of palliative care for patients with end-stage respiratory diseases is discussing prognosis, advance directives, possibilities for end-oflife care, and spirituality (Curtis et al, 2004; Curtis, 2008). An inpatient palliative care programme for patients with end-stage respiratory diseases requires specific expertise and skills of the staff regarding respiratory diseases and palliative care. For example, NPPV might be used as a palliative measure to reduce dyspnoea, but staff need to be appropriately trained, and resources need to be available (Curtis et al, 2007). Therefore, a palliative care physician and chest physician need to be part of the team. In addition, the nurses and allied health professionals have to be trained in both palliative and respiratory care. Although aspects of pulmonary rehabilitation may have an important role in a palliative care programme for respiratory diseases (Sachs and Weinberg, 2009), palliative care programmes for


patients with respiratory diseases need to be distinguished from pulmonary rehabilitation. Pulmonary rehabilitation is defined as an evidencebased, multidisciplinary and comprehensive intervention for patients with chronic respiratory diseases who are symptomatic and often have decreased daily life activities (Nici et al, 2006). Patients with respiratory diseases who are symptomatic, or experience impairments in daily life activities despite optimum medication, need to be referred to a specialized pulmonary rehabilitation centre for interdisciplinary intake and assessment (Spruit et al, 2008). Patients who are not able to participate in a pulmonary rehabilitation programme because of end-stage disease, or patients who deteriorate during pulmonary rehabilitation can be referred for a palliative care programme. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Preferably, palliative care programmes are developed in close collaboration with a specialized pulmonary rehabilitation centre which enables offering a treatment programme, tailored to the patient’s needs and health status. Palliative care has been shown to be associated with significantly lower intensive care unit admission and lower hospital costs than usual care (Penrod et al, 2006). Hospice care has been shown to be cost-neutral for people who die of cancer, but the influence on health-care costs in patients with chronic respiratory diseases remains unclear (Campbell et al, 2004; Enguidanos et al, 2005; Hardin et al, 2008). Therefore, further research is necessary regarding the influence of palliative care services on total health-care costs for patients with end-stage respiratory diseases. Although the experiences of the present patientcentred interdisciplinary palliative care programme are promising, to date, no scientific studies are available which studied the effects of a patientcentred interdisciplinary palliative care programme for end-stage respiratory diseases on health status, daily symptom burden, patient satisfaction and quality of dying. Therefore, further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction JPN and quality of dying. I●

{ Psychosocial distress is prevalent in end-stage respiratory diseases, and needs to be addressed ❜

Acknowledgements DJAJ is a part time PhD student who is financially supported by: Proteion Thuis, Horn, The Netherlands; Ciro, centre of expertise for chronic organ failure, Horn, the Netherlands; Grant

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3.4.06.082 of the Netherlands Asthma Foundation, Leusden, The Netherlands; Stichting Wetenschapsbevordering Verpleeghuiszorg, Utrecht, The Netherlands. The authors are grateful to the interdisciplinary team of the of the advance care unit for their contribution to this palliative care programme. Andersson FL, Svensson K, Gerhardsson de Verdier M (2006) Hospital use for COPD patients during the last few years of their life. Respir Med 100(8): 1436–41 Au DH, Udris EM, Fihn SD, McDonell MB, Curtis JR (2006) Differences in health care utilization at the end of life among patients with chronic obstructive pulmonary disease and patients with lung cancer. Arch Intern Med 166(3): 326–31 Blinderman CD, Homel P, Billings JA, Tennstedt S, Portenoy RK (2009) Symptom distress and quality of life in patients with advanced chronic obstructive pulmonary disease. J Pain Symptom Manage 38(1): 115–23 Burt J, Shipman C, Richardson A, Ream E, Addington-Hall J (2010) The experiences of older adults in the community dying from cancer and non-cancer causes: a national survey of bereaved relatives. Age Ageing 39(1): 86–911 Buxton KL, Stone RA, Buckingham R, Pursey NA, Roberts CM (2010) Current and planned palliative care service provision for chronic obstructive pulmonary disease patients in 239 UK hospital units: comparison with the gold standards framework. Palliat Med Mar 26 [Epub ahead of print] Campbell DE, Lynn J, Louis TA, Shugarman LR (2004) Medicare programme expenditures associated with hospice use. Ann Intern Med 140(4): 269–77 Currow DC, Ward A, Clark K, Burns CM, Abernethy AP (2008) Caregivers for people with end-stage lung disease: characteristics and unmet needs in the whole population. Int J Chron Obstruct Pulmon Dis 3(4): 753–62 Curtis JR (2008) Palliative and end-of-life care for patients with severe COPD. Eur Respir J 32(3): 796–803 Curtis JR, Cook DJ, Sinuff T, White DB et al (2007) Noninvasive positive pressure ventilation in critical and palliative care settings: understanding the goals of therapy. Crit Care Med 35(3): 932–9 Curtis JR, Engelberg RA, Nielsen EL, Au DH, Patrick DL (2004) Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J 24(2): 200–5 Doyle D, Hanks G, Cherny N, Calman K (2004) Oxford Textbook of Palliative Medicine. Oxford University Press, New York Edmonds, P, Karlsen S, Khan S, Addington-Hall J (2001) A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 15(4): 287–95 Elkington, H, White, P, Addington-hall, J, Higgs, R. , Edmonds, P (2005) The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med 19(4): 485–91 Enguidanos SM, Cherin D, Brumley R (2005) Home-based palliative care study: site of death, and costs of medical

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