Palliative care in interstitial lung disease: living well

被引:181
作者
Kreuter, Michael [1 ]
Bendstrup, Elisabeth [2 ]
Russell, Anne-Marie [3 ,4 ]
Bajwah, Sabrina [5 ]
Lindell, Kathleen [6 ]
Adir, Yochai [7 ]
Brown, Crystal E. [8 ,9 ]
Calligaro, Greg [10 ]
Cassidy, Nicola [11 ]
Corte, Tamera J. [12 ]
Geissler, Klaus [13 ]
Hassan, Azza Adel [14 ,15 ]
Johannson, Kerri A. [16 ]
Kairalla, Ronaldo [17 ]
Kolb, Martin [18 ]
Kondoh, Yasuhiro [19 ]
Quadrelli, Sylvia [20 ]
Swigris, Jeff [21 ]
Udwadia, Zarir [22 ]
Wells, Athol [23 ,24 ]
Wijsenbeek, Marlies [25 ]
机构
[1] Heidelberg Univ, Ctr Interstitial & Rare Lung Dis, Pneumol & Resp Crit Care Med, Thoraxklin, D-69126 Heidelberg, Germany
[2] Aarhus Univ Hosp, Dept Resp Dis & Allergy, Aarhus, Denmark
[3] Royal Brompton Hosp, Natl Heart & Lung Inst, London, England
[4] Imperial Coll London, London, England
[5] Kings Coll London, Cicely Saunders Inst, Dept Palliat Care Policy & Rehabil, London, England
[6] Univ Pittsburgh, Dorothy P & Richard P Simmons Ctr Interstitial Lu, Pittsburgh, PA USA
[7] Technion Israel Inst Technol, Pulm Div, Lady Davis Carmel Med Ctr, Fac Med, Haifa, Israel
[8] Harborview Med Ctr, Div Pulm & Crit Care Med, Seattle, WA USA
[9] Univ Washington, Med Ctr, Seattle, WA 98195 USA
[10] Univ Cape Town, Div Pulmonol, Dept Med, Cape Town, South Africa
[11] Irish Lung Fibrosis Assoc, Dublin, Ireland
[12] Univ Sydney, Royal Prince Alfred Hosp, Sydney, NSW, Australia
[13] Patient Support Grp Lungenfibrose eV, Essen, Germany
[14] Hamad Med Corp, Support & Palliat Sect, Oncol Dept, Doha, Qatar
[15] Alexandria Univ, Med Res Inst, Clin Oncol Dept, Alexandria, Egypt
[16] Univ Calgary, Dept Med, Calgary, AB, Canada
[17] Univ Sao Paulo, Heart Inst InCor, Pulm Div, Med Sch, Sao Paulo, Brazil
[18] McMaster Univ, Firestone Inst Resp Hlth, Dept Med, Pathol & Mol Med, Hamilton, ON, Canada
[19] Nagoya Univ, Tosei Gen Hosp, Dept Resp Med & Allergy, Sch Med, Nagoya, Aichi, Japan
[20] Buenos Aires British Hosp, Buenos Aires, DF, Argentina
[21] Natl Jewish Hlth, Interstitial Lung Dis Program, Denver, CO USA
[22] PD Hinduja Natl Hosp & Med Res Ctr, Dept Resp Med, Bombay, Maharashtra, India
[23] Royal Brompton Hosp, NIHR Biomed Res Unit, Sydney St, London, England
[24] Imperial Coll London, Natl Heart & Lung Inst, Fibrosis Res Grp, London, England
[25] Erasmus Univ, Dept Resp Med, Med Ctr, Rotterdam, Netherlands
基金
美国国家卫生研究院;
关键词
IDIOPATHIC PULMONARY-FIBROSIS; END-OF-LIFE; TERMINALLY-ILL PATIENTS; CHRONIC COUGH; DOUBLE-BLIND; GASTROESOPHAGEAL-REFLUX; AMBULATORY OXYGEN; WORKING GROUP; HEALTH-STATUS; CANCER;
D O I
10.1016/S2213-2600(17)30383-1
中图分类号
R4 [临床医学];
学科分类号
1002 ; 100602 ;
摘要
Progressive fibrotic interstitial lung diseases (ILDs) are characterised by major reductions in quality of life and survival and have similarities to certain malignancies. However, palliative care expertise is conspicuously inaccessible to many patients with ILD. Unmet patient and caregiver needs include effective pharmacological and psychosocial interventions to improve quality of life throughout the disease course, sensitive advanced care planning, and timely patient-centred end-of-life care. The incorrect perception that palliative care is synonymous with end-of-life care, with no role earlier in the course of ILD, has created a culture of neglect. Interventions that aim to improve life expectancy are often prioritised without rigorous assessment of the individual's health and psychosocial needs, thereby inadvertently reducing quality of life. As in malignant disorders, radical interventions to slow disease progression and palliative measures to improve quality of life should both be prioritised. Efficient patient-centred models of palliative care must be validated, taking into account religious and cultural differences, as well as variability of resources. Effective implementation of palliative care for ILD will require multidisciplinary participation from clinicians, specialist nurses, psychologists, social workers, and, in some countries, non-governmental faith and community-based organisations with access to palliative care expertise.
引用
收藏
页码:968 / 980
页数:13
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