A day at a time: caregiving on the edge in advanced COPD

The human cost of advanced chronic obstructive pulmonary disease (COPD) for informal caregivers in Canada is mostly unknown. Formal care is episodic, and informal caregivers provide the bulk of care between exacerbations. While patients fear becoming burdensome to family, we lack relevant data against which to assess the validity of this fear. The purpose of our qualitative study was to better understand the extent and nature of ‘burden’ experienced by informal caregivers in advanced COPD. The analysis of 14 informal caregivers interviews yielded the global theme ‘a day at a time,’ reflecting caregivers’ approach to the process of adjusting/coping. Subthemes were: loss of intimate relationship/identity, disease-related demands, and coping-related factors. Caregivers experiencing most distress described greater negative impact on relational dynamics and identity, effects they associated with increasing illness demands especially care recipients’ difficult, emotionally controlling attitudes/behaviors. Our findings reflect substantial caregiver vulnerability in terms of an imbalance between burden and coping capacity. Informal caregivers provide necessary, cost-effective care for those living with COPD and/or other chronic illness. Improved understanding of the physical, emotional, spiritual, and relational factors contributing to their vulnerability can inform new chronic care models better able to support their efforts

End of Life Care in Canada: A Report from the Canadian Academy of Health Sciences Forum

In Ottawa on September 20, 2012, the Canadian Academy of Health Sciences held a forum entitled, ‘End of Life Care: the Last 100 Days’.  Following an opening plenary by Dr. Daren Heyland, presentations and discussions ensued, highlighting recent research, current controversies, and future directions to improve end-of-life care in Canada [1]. Three articles in this issue of Clinical Investigative Medicine build on presentations from that day