Effects of lung transplantation on inpatient end of life care in cystic fibrosis

Abstract

Background: The impact of lung transplantation on end of life care in cystic fibrosis (CF) has not been widely investigated. Methods: Information about end of life care was collected from records of all patients who died in our hospital from complications of CF between 1995 and 2005. Transplant and non-transplant patients were compared. Results: Of 38 patients who died, 20 (53%) had received or were awaiting lung transplantation ("transplant" group), and 18 (47%) were not referred, declined transplant, or were removed from the waiting list ("non-transplant"). Transplant patients were more likely than non-transplant patients to die in the intensive care unit (17 (85%) versus 9 (50%); P = 0.04). 16 (80%) transplant patients remained intubated at or shortly before death, versus 7 (39%) non-transplant patients (P = 0.02). Do-not-resuscitate orders were written later for transplant patients; 12 (60%) on the day of death versus 5 (28%) in non-transplant patients (P = 0.02). Transplant patients were less likely to participate in this decision. Alternatives to hospital death were rarely discussed. Conclusions: Receiving or awaiting lung transplantation affords more aggressive inpatient end of life care. Despite the chronic nature of CF and knowledge of a shortened life span, discussions about terminal care are often delayed until patients themselves are unable to participate.

‘A bed in the middle of nowhere’: Parents' meanings of place of death for adults with cystic fibrosis

“…Similarly, a survey of 17 CF centres in the UK and Ireland over an eight year period found that only 4% of 378 deaths had occurred at home (Cottrell, 1991). More recent reviews of hospital records indicate that over two thirds of patients with CF die in hospital (Dellon et al, 2007 andMitchell et al, 2000), reflecting both the proportion of patients receiving aggressive treatment at time of death and professionals' uncertainty over identifying the 'final illness' (Robinson, 2000).…”

“…Use of mechanical ventilation and lung transplantation, first attempted for those with CF in the late 1980s, has led to a higher proportion of hospital deaths occurring within the intensive care unit (ITU), with those waiting for, or having received, lung transplant more likely to be intubated at or shortly before time of death and likely to die quickly after ventilatory support is withdrawn (Dellon et al, 2007 andFord andFlume, 2007). Although clinical outcomes of patients with CF admitted to ITU have much improved over the last two decades, under half of those currently admitted survive to hospital discharge (Vedam, Moriarty, Torzillo, McWilliam, & Bye, 2004).…”

“…Aggressive interventions being delivered in hospital environments until the point of death (Dellon et al, 2007 andMitchell et al, 2000) allow little clear transition from therapeutic care to a traditional model of palliative care. Few unambiguous signals can therefore be given to families that end-stage CF has been reached (Robinson, 2000) and that place of death should be considered.…”

“…Few unambiguous signals can therefore be given to families that end-stage CF has been reached (Robinson, 2000) and that place of death should be considered. Furthermore, it is not known whether young people are at increased risk of receiving unwanted treatment and feeling more unsatisfied with end-of-life care than those dying at home (Dellon et al, 2007).…”

“…Although the shift towards routine CF care performed in the home mirrors the emphasis on home care for those with other chronic conditions, whether those with CF die in hospital locations due to preference or lack of alternative options (Dellon et al, 2007), and how families experience and interpret place of end-of-life care and death, is not known. The aim of this paper is to present factors that influence and provide meanings of place of end-of-life care and death in terms of engagement with, and estrangement from, the built, social and psychological environment for bereaved parents of adults with CF.…”