Assessing priorities for allocation of donor liver grafts: survey of public and clinicians

While the world of gastroenterology wrestles with MELD,
hepatocellular carcinoma, and the most effective scheme for allocation of
donor livers, should some thought not be given to the opinions of patients
and carers?

Neuberger et al. studied attitudes to allocation of donated livers
using a questionnaire which presented several hypothetical scenarios of
potential liver recipients and asked individuals to rank patients in order
of priority (1). This study demonstrated that the opinions of the public
regarding the priority for allocation differs substantially from those of
gastroenterologists (1). In a study using identical methodology we have
shown that patients (n=25) on the Scottish liver transplant waiting list,
between May 2003 and April 2004, and their main carers (n=22) differ
significantly in their priorities, regarding liver allocation, from the
same group of gastroenterologists and strongly resemble those of the
general public, as demonstrated by Neuberger et al. (1). When groups’
selections of hypothetical patients were ranked, patients’ ranking
correlated with that of the public: tau=0.91(p=0.002) but not with the
gastroenterologists’: tau=0.26(p=0.39). The cohort of patients and
carers tended to favour emotionally charged, hypothetical cases such as
pregnant women and children for liver allocation and penalise anti-social
behaviour such as alcoholism, whilst the gastroenterologists tended to
favour patients with the best predicted outcome of transplantation (1).

When asked to choose a hypothetical patient whom they judged to be
“least deserving” of a donated liver, the patients most frequently chose
the case with alcoholic liver disease (ALD), compared to the
gastroenterologists who chose the case who is a prisoner (1).

An acknowledged complexity of asking patients opinions about
healthcare matters is that their responses generally reflect their
personal experiences (2). This was highlighted by comparing responses of
the patients with non-ALD to those of patients with ALD. Patients with
ALD (n=8) were significantly less likely to pick the ALD case as that
least deserving of a donated liver (p=0.00081) and carers of ALD patients
were significantly more likely to allocate a liver to the hypothetical ALD
case than carers of non-ALD patients (p=0.0035).

In summary, an inconsistency of opinion exists between
gastroenterologists and patients regarding allocation of donor livers.
Although these patients have considerable insight, strong views about
liver allocation, and some medical knowledge about liver disease their
opinions still strongly resemble those of the general public. Moreover
patients’ personal experiences might make it impossible to obtain unbiased
views and impractical to have a less paternalistic approach in liver
allocation.

1. Neuberger J, Adams D., MacMaster P, Maidment A, et al. Assessing
priorities for allocation of donor liver grafts: survery of public and
clinicians. British Medical Journal 1998; 317:172-175

2. Wensing M, Elwyn G. Improving the quality of health care.
Methods for incorporating patients’ views in healthcare. British Medical
Journal 2003; 326:877-879

Competing interests:
John Forsythe: Honoraria and grants received from Astellas PLC, Novartis PLC, Roche PLC, Wyeth PLC in connection with work.

Research carried out, partly supported by, Roche PLC, Wyeth PLC, Astellas PLC and Novartis PLC. (no salary received from any pharmaceutical group)

Specialty Advisor to the Chief Medical Officer of Scotland (transplantation & organ donation)
Chairman of the Scottish Transplant Group (Advisory Group to the Scottish Minister of Health)

President of British Transplantation Society 2005-2007
Non-executive Board Member, NHS Quality Improvement Scotland