Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement

Sullivan, Donald R.; Iyer, Anand S; Enguídanos, Susan; Cox, Christopher E.; Farquhar, Morag; Janssen, Daisy; Lindell, Kathleen O.; Mularski, Richard A.; Smallwood, Natasha; Turnbull, Alison E.; Wilkinson, Anne; Courtright, Katherine R.; Maddocks, Matthew; McPherson, Mary Lynn; Thornton, J. Daryl; Campbell, Margaret; Fasolino, Tracy; Fogelman, Patricia M.; Gershon, Larry; Gershon, Thayer; Hartog, Christiane S.; Luther, Judy; Meier, Diane E.; Nelson, Judith E.; Rabinowitz, Elliot; Rushton, Cynda Hylton; Sloan, Danetta H.; Kross, Erin K.; Reinke, Lynn F.

doi:10.1164/rccm.202207-1262st

Cited by 50 publications

(39 citation statements)

References 269 publications

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“…Since hope impacts on both in equal measure and opportunities, both patient and IC should be considered as a single unit in terms of care and research 32. This may be particularly beneficial in under-researched dyadic populations such as COPD 33 34…”

Section: Introductionmentioning

confidence: 99%

“…However, there is a lack of data on how hope is experienced in the context of COPD. Greater understanding of patient and caregiver QoL, symptom burden, hope and spiritual well-being in this complex and life-limiting disease as well as deeper understanding of their dyadic experience over time would aid in the planning and management of care 33 34. Understanding dyadic hope expression as a transitional pattern over time may also help HCPs to address and recognise patterns of hope as they change, constructing new models of care focused on the needs of both patients and ICs.…”

Section: Introductionmentioning

confidence: 99%

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PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study

et al. 2023

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IntroductionChronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs).Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately.Methods and analysisThis is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL.Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation.Ethics and disseminationThis study protocol received ethical approval on 24 May 2022 from theCommission cantonale d'éthique de la recherche sur l'être humain—Canton of Vaud. The identification number is 2021-02477.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study

et al. 2023

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“…Our results support the current recommendations, that palliative care should be integrated early into disease-modifying treatment options especially in ILD to allow well-timed advance care planning and pre-planned arrangements for end-of-life care. 35 …”

Section: Discussionmentioning

confidence: 99%

“…Early palliative care and advance care planning could start as early as at the time of the diagnosis of a serious respiratory illness. 35 …”

Section: Discussionmentioning

confidence: 99%

Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study

Pihlaja

Rantala

Leivo-Korpela

et al. 2023

Palliative Medicine Reports

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Background: Few patients with chronic nonmalignant pulmonary diseases receive specialist palliative care consultation, despite their high symptom burden in end of life. Objectives: To study palliative care decision making, survival, and hospital resource usage in patients with nonmalignant pulmonary diseases with or without a specialist palliative care consultation. Methods: A retrospective chart review of all patients with a chronic nonmalignant pulmonary disease and a palliative care decision (palliative goal of therapy), who were treated in Tampere University Hospital, Finland, between January 1, 2018 and December 31, 2020. Results: A total of 107 patients were included in the study, 62 (58%) had chronic obstructive pulmonary disease (COPD), and 43 (40%) interstitial lung disease (ILD). Median survival after palliative care decision was shorter in patients with ILD than in patients with COPD (59 vs. 213 days, p = 0.004). Involvement of a palliative care specialist in the decision making was not associated with the survival. Patients with COPD who received palliative care consultation visited less often emergency room (73% vs. 100%, p = 0.019) and spent fewer days in the hospital (7 vs. 18 days, p = 0.007) during the last year of life. When a palliative care specialist attended the decision making, the presence and opinions of the patients were recorded more often, and the patients were more frequently referred to a palliative care pathway. Conclusions: Specialist palliative care consultation seems to enable better end-of-life care and supports shared decision making for patients with nonmalignant pulmonary diseases. Therefore, palliative care consultations should be utilized in nonmalignant pulmonary diseases preferably before the last days of life.

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“…Although the scope of hospice and palliative care has been expanded to patients with terminal non-malignant diseases, some patients with such diseases may live for a long time after diagnosis, and distinguishing between the terminal stage and the dying process may be difficult as their condition repeatedly improves and deteriorates [4,5]. Other patients might not receive proper hospice and palliative care, due to the common occurrence of a sudden transition to the dying process [3,6].…”

Section: Decision and Practice Of End-of-life Care Inmentioning

confidence: 99%

Decision and Practice of End-of-Life Care in Lung Disease Patients with Physicians Orders for Life Sustaining Treatment

Kang

Han

et al. 2023

Korean J Hosp Palliat Care

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Purpose:The purpose of this study was to analyze end-of-life care practices in lung disease patients with physician orders for life-sustaining treatment (POLSTs). Methods: We retrospectively analyzed data from medical records regarding the end-of-life care practices of POLST decisions for patients with lung disease hospitalized at a tertiary hospital in Seoul, South Korea. Data were collected from January 1 to June 30, 2021. Results: Of 300 total patients, 198 had lung cancer (66.0%) and 102 had non-malignant lung diseases (34.0%). A POLST was written for 187 patients (62.3%), and an advance directive was written for 20 patients (6.7%). Subsequent treatments were hemodialysis in 13 patients (4.3%), surgery in 3 patients (1.0%), and cardiopulmonary cerebral resuscitation in 1 patient (0.3%). Among cancer patients, chemotherapy was performed in 11 patients (3.7%), targeted therapy in 11 patients (3.7%), immunotherapy in 6 patients (2.0%), and radiation therapy in 13 patients (4.3%). Depending on the type of lung disease, types of treatment differed, including hemodialysis, ventilators, bilevel positive airway pressure, high-flow nasal cannulas, nebulizers, enteral nutrition, central line, inotropic agents, and opioids. Conclusion: Although the goals of hospice care are the same whether a patient has lung cancer or a nonmalignant lung disease, because the characteristics of the respective diseases differ, end-oflife care practices and hospice approaches must be considered differently.

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Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement

Cited by 50 publications

References 269 publications

PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study

PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland – a multicentre longitudinal mixed-methods protocol study

Specialist Palliative Care Consultation for Patients with Nonmalignant Pulmonary Diseases: A Retrospective Study

Decision and Practice of End-of-Life Care in Lung Disease Patients with Physicians Orders for Life Sustaining Treatment

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