Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study

Pinnock et al, in their paper on the longitudinal perspectives of
those with severe chronic obstructive pulmonary disease (COPD), raise some
important and timely issues [1]. Important, because they illuminate the
realities of advanced disease for patients and families, and timely,
because of the increase in the absolute numbers of older people dying with
(often multiple) non cancer conditions [2].

We would like to draw attention to the resonance and implications of
this work across other non cancer conditions. Some of the findings echo
strongly the experience of those with advanced chronic kidney disease
(CKD), with perceptions of the disease as a 'way of life' rather than
'illness' and the high level of acceptance of extremely debilitating
symptoms, two examples of this.

There are also notable differences. COPD has a trajectory typically
spanning years, and is associated with life constraining and debilitating
symptoms, sometimes punctuated by life threatening exacerbations. This is
very different from the CKD trajectory in which the onset of uraemic
symptoms indicates the need for dialysis or if a conservative route is
chosen, the need to address end of life management. In advanced CKD,
therefore, the inevitable decision for or against dialysis is a point
which crystallises thinking about whether a more active or palliative
approach is right, with 'not for dialysis' decisions often triggering a
transition towards palliative care [3]. The 'unpredictability' or 'chaos
narrative' that the COPD patients describe is also not shared by all
advanced CKD patients - in recent work, only about 20% of those not on
dialysis had this 'unpredictable' pattern, in contrast to a more stable
pattern or a steady decline towards death [4].

We need to understand more about the longitudinal perspectives in
advanced non cancer conditions, and the similarities and differences
between conditions. We may also need to move away from considering end of
life care mainly within disease-specific groups. As the numbers of deaths
among older people increases, a growing proportion are dying with multiple
co-morbid conditions. This is not reflected in death registration
statistics, with the system of registration still reflecting one dominant
cause and thus poorly reflecting the realities of complex, multiple
conditions [5].

Although deaths with end-stage renal disease probably represent only
about 2% of all UK deaths [6], they can be a model for multiple co-
morbidities, since so many of these largely older patients have cardiac
and/or vascular disease, diabetes mellitus, and other conditions. And the
overall message must be that, whatever the condition or (increasingly) mix
of conditions, there should be multiple entry points into palliative care;
end of life care needs will only be met if there is proactive and timely
assessment and re-assessment of palliative care needs.

References:

1.Pinnock H, et al, Living and dying with severe chronic obstructive
pulmonary disease: multi-perspective longitudinal qualitative study. BMJ,
2011. 342:142.

2.Gomes B. and Higginson IJ, Where people die (1974-2030); Past trends,
future projections, and implications for care. Palliative Medicine, 2007.

3.End of Life Care in Advanced Kidney Disease: A Framework for
Implementation. 2009, Department of Health: London, UK.

4.Murtagh FEM, Understanding and improving quality of care for people with
conservatively-managed Stage 5 Chronic Kidney Disease - the course of
symptoms and other concerns over time. 2009, PhD. King's College London,
UK.

5.Hawley, C.L., Is it ever enough to die of old age? Age and Ageing, 2003.
32(5): p. 484-6.

6.Murtagh FEM and Higginson IJ, Death from renal failure eighty years on:
how far have we come? J.Palliat.Med, 2007. 10(6):1236-1238.