Living, dying and caring in advanced liver disease: the challenge of uncertainty
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Date
04/07/2015Author
Kimbell, Barbara
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Abstract
Background: The number of patients dying with advanced liver disease is rising
dramatically. However, little is known about the experiences of these patients and
their families in respect of their care and everyday life with the disease. Palliative
care services are traditionally focused on cancer and more recently on other types of
organ failure, but liver disease is relatively neglected.
Aim and objectives: This study aimed to broaden our understanding of the
experience of living and dying with advanced liver disease. Specifically, it sought to
explore the dynamic physical, psychosocial, existential and information needs of
patients and their lay and professional carers, and to review their use of health, social
and voluntary services. Additionally, this study examined the utility of a qualitative
longitudinal, multi-perspective methodology in end-of-life research.
Methods: This study employed qualitative, multi-perspective serial in-depth
interviews. Patients with different aetiologies of liver disease were recruited in
hospital. They and their lay carers were interviewed up to three times over one year.
Single interviews were undertaken with case-linked professionals. Interviews were
recorded, transcribed and analysed using grounded theory techniques and NVivo 9.
Results: 15 patients, 11 lay carers and 11 professional carers were recruited, and 53
interviews conducted. Uncertainty was the key experience at all stages of the illness,
across all domains, and for all participants: patients, lay carers and professionals.
This uncertainty related to the nature of the illness, the unpredictability of disease
pathway and prognosis, poor communication and information-sharing, and
complexities of care. Coping strategies demonstrated a continuous quest to manage
uncertainty. Current care arrangements were a poor fit with the high levels of
physical and psychosocial need identified. The ubiquitous uncertainty meant that a
care planning approach was difficult to introduce. Employing a qualitative
longitudinal, multi-perspective approach emerged as a useful and effective way in
which to conduct research with this patient group and contributed new learning with
regard to its application in end-of-life research.
Conclusion: This study identified uncertainty as the central pervasive factor in the
experiences of patients, lay and professional carers. The needs of this patient group
are currently poorly met from diagnosis to bereavement. Uncertainty makes advance
care planning important, but difficult to know when to start. More needs to be done
to ensure that people living and dying with advanced liver disease and their families
benefit from appropriate and timely supportive and palliative care.