Caregivers for people with end-stage lung disease: Characteristics and unmet needs in the whole population

David C Currow¹, Alicia Ward², Katie Clark³, Catherine M Burns⁴, Amy P Abernethy^1,5

¹Department of Palliative and Supportive Services, Flinders University, Adelaide, Australia; ²Concord Repatriation General Hospital Palliative Care Department, Concord, Sydney, Australia; ³Notre Dame University, Darlinghurst, Sydney, Australia; ⁴Division of Medical Oncology, Department of Medicine, Duke University Medical Centre, Durham, North Carolina, USA; ⁵Division of Medical Oncology, Department of Medicine, Duke University Medical Centre, Durham, North Carolina, USA

Introduction: End-stage lung disease (ESLD) (predominantly caused by chronic obstructive pulmonary disease and restrictive lung disease) is a significant cause of death. Little is known about community care for people with ESLD especially in the period leading to death. This paper describes demographic characteristics of caregivers, and key characteristics of the deceased irrespective of specialist service utilization.

Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey conducted statewide. For the last eight years questions about end of life have been asked of 3000 respondents annually (participation rate 77.9%). Directly standardized to the whole population, this study describes people who cared for someone with ESLD until death.

Results: One third (6370/18267) had someone die in the last five years from a terminal illness, 644 from ESLD (3.5% of respondents; 10.2% of deaths). One in five (20.8%) provided physical care: 43 respondents provided day-to-day and 63 provided intermittent hands-on care for an average of 40.1 months (SD 56.9). Caregivers were on average 51.2 years old (range 17–85; SD 16.5) and one in five was a spouse. Additional support to provide physical care was an unmet need by 17% of caregivers. The deceased were an average of 73.9 years old (range 47–92; SD 10.4). Only 31.1% were assessed as ‘comfortable’ or ‘very comfortable’ in the last fortnight of life.

Discussion: Given the health consequences of caregiving, caregivers of people with ESLD would benefit from prospectively defining their needs given the time for which intense caregiving is provided.

Keywords: chronic obstructive pulmonary disease, end-stage lung disease, community care, end-of-life care, palliative care, population survey