Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases

Abstract

BackgroundMalignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases.AimTo compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data.Setting/participantsThe Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0–10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing.ResultsIn lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65–81) than non-malignant end-stage respiratory diseases (81 years; IQR 73–87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both.ConclusionsIn this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.

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

“…Symptom management is crucial for cancer patients to have a comfortable end of life, and the most frequently administered medication during their final hospitalization is opioids [ 27 ]. Pain-related distress is greater in cancer patients, whereas respiratory-related pain is greater in patients with non-malignant lung diseases [ 8 ]. In addition, since the main symptoms of patients with non-malignant lung diseases include dyspnea, cough, fatigue, and an increase in secretions [ 9 ], it is thought that treatment to relieve dyspnea should be prioritized.…”

“…In addition, due to misunderstandings and misperceptions of hospice and palliative care for terminal non-malignant diseases, patients and their families may interpret hospice care as withdrawal of treatment, and healthcare providers may be insufficiently informed as well [ 3 ]. However, the physical and psychosocial needs, symptom burden, and function decline of patients with non-malignant chronic lung disease resemble those of lung cancer patients [ 7 , 8 ]. In both types of cases, the goals of hospice and palliative care involve relieving the physical symptoms of patients and their families [ 9 ], improving QoL through emotional, social, and spiritual support, and reducing pain [ 4 ].…”

Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research

“…40 typology of trajectories, 44 including for symptoms and concerns for people at the end of life. 27,45,46 Data can be collected either prospectively (e.g. at point of care) or retrospectively (e.g.…”

“…43 As such, anchorning can help define trajectories for whole diagnostic groups 34 and typology of trajectories, 44 including for symptoms and concerns for people at the end of life. 27,45,46…”

The effect of an integrated palliative care intervention on quality of life and acute healthcare use in patients with COPD: Results of the COMPASSION cluster randomized controlled trial

“…Patients with advanced COPD may equally benefit from palliative care. 6 , 8 However, the evidence of the effectiveness of palliative care for this patient group is still scarce.…”