Gemma Clarke

How are treatment decisions made about artificial nutrition for individuals at risk of lacking capacity? A systematic literature review.

Background Worldwide, the number of individuals lacking the mental capacity to participate in decisions about their own healthcare is increasing. Due to the ageing global population and advancing medical treatments, there are now many more people living longer with neurological disorders, such as dementia, acquired brain injuries, and intellectual disabilities. Many of these individuals have feeding difficulties and may require artificial nutrition. However, little is known about the decision-making process; the evidence base is uncertain and often ethically complex. Using the exemplar of artificial nutrition, the objective of this review is to examine how treatment decisions are made when patients are at risk of lacking capacity. Methods and Findings We undertook a systematic review according to PRISMA guidelines to determine who was involved in decisions, and what factors were considered. We searched PubMed, AMED, CINAHL, EMBASE, PsychINFO, and OpenSigle for quantitative and qualitative studies (1990–2011). Citation, reference, hand searches and expert consultation were also undertaken. Data extraction and quality assessment were undertaken independently and in duplicate. We utilised Thomas and Harden’s ‘Thematic Synthesis’ for analysis. Sixty-six studies met inclusion criteria, comprising data from 40 countries and 34,649 patients, carers and clinicians. Six themes emerged: clinical indications were similar across countries but were insufficient alone for determining outcomes; quality of life was the main decision-making factor but its meaning varied; prolonging life was the second most cited factor; patient’s wishes were influential but not determinative; families had some influence but were infrequently involved in final recommendations; clinicians often felt conflicted about their roles. Conclusions When individuals lack mental capacity, decisions must be made on their behalf. Dynamic interactive factors, such as protecting right to life, not unnecessarily prolonging suffering, and individual preferences, need to be addressed and balanced. These findings provide an outline to aid clinical practice and develop decision-making guidelines.

Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

BackgroundSome people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team.MethodsA three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process?ResultsDecision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: (1) Risks, burdens and benefits; (2) Treatment goals; (3) Normative ethical values; (4) Interested parties.ConclusionsDecision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of ‘who decides’ cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum.

Should they have a percutaneous endoscopic gastrostomy? The importance of assessing decision-making capacity and the central role of a multidisciplinary team

Decisions about percutaneous endoscopic gastrostomy (PEG) can be clinically and ethically challenging, particularly when patients lack decision-making capacity. As the age of the UK population rises, with the associated increase in prevalence of dementias and neurodegenerative diseases, it is becoming an increasingly important issue for clinicians. The recent review and subsequent withdrawal of the Liverpool Care Pathway highlighted feeding as a particular area of concern. The authors undertook a 1-year retrospective review of individuals referred to the feeding issues multidisciplinary team (FIMDT) at Addenbrookes Hospital, Cambridge, UK, in 2011. The majority of patients referred (n = 158) had a primary diagnosis of cancer (44%). The second largest group was those who had had a stroke or brain haemorrhage (13%). Twenty-eight per cent of patients had no, or uncertain, decision-making capacity on at least one occasion during decision-making. There are reflections on the role of a multidisciplinary team in the process of decision-making for these complex patients.

The difficulties of discharging hospice patients to care homes at the end of life: A focus group study:

Background: Discharge from inpatient palliative care units to long-term care can be challenging. In the United Kingdom, hospice inpatients move to a care home if they no longer require specialist palliative care and cannot be discharged home. There is evidence to suggest that patients and families find the prospect of such a move distressing. Aim: To investigate the issues that arise when patients are transferred from hospice to care home at the end of life, from the perspective of the hospice multidisciplinary team. Design: A qualitative study, using thematic analysis to formulate themes from focus group discussions with hospice staff. Setting/participants: Five focus groups were conducted with staff at five UK hospices. Participants included multidisciplinary team members involved in discharge decisions. All groups had representation from a senior nurse and doctor at the hospice, with group size between three and eight participants. All but one group included physiotherapists, occupational therapists and family support workers. Results: A major focus of group discussions concerned dilemmas around discharge. These included (1) ethical concerns (dilemmas around the decision, lack of patient autonomy and allocation of resources); (2) communication challenges; and (3) discrepancies between the ideals and realities of hospice palliative care. Conclusion: Hospice palliative care unit staff find discharging patients to care homes necessary, but often unsatisfactory for themselves and distressing for patients and relatives. Further research is needed to understand patients’ experiences concerning moving to care homes for end of life care, in order that interventions can be implemented to mitigate this distress.

Decisions regarding artificial nutrition for those at risk of lacking capacity: a systematic review

Background In many countries, artificial nutrition is frequently used when individuals are approaching the end of their lives; however, it rarely used in the UK. Many patients for whom artificial nutrition is considered are approaching the end of life and at risk of lacking capacity. For these vulnerable patients, decision-making is emotive and challenging. Aim To review the international literature concerning decisions about artificial nutrition for individuals at risk of lacking capacity due to dementia, intellectual disability or acquired brain injury (ABI). Key research questions: a) Which factors are being considered? b) Who is involved in the decisions? Methods Searches of PubMed, AMED, CINAHL, EMBASE, PsychInfo and OpenSIGLE were undertaken for articles in English between 1990 and 2011 containing original empirical data. Hand searches were undertaken of key journals and articles. Information was extracted and analysed using NVivo and a narrative synthesis of emergent themes undertaken. Results Sixty-seven relevant studies were retrieved: 75% included information about dementia patients, 42% ABI and 6% intellectual disabilities. The majority of studies were based in the USA (46%). The findings revealed that indications for artificial nutrition are embedded within the personal circumstances of the patient and the contextual environment of the treatment. Key decision factors include: prolonging life and quality of life, interpretation of behaviour and family/surrogate wishes. The key decision points for each patient group are modelled. Conclusions The majority of the international literature relates to end of life care and dementia patients. The results show that decisions about artificial nutrition do not happen in isolation. The wide variety of studies identified, the large number of different persons involved and the diversity of decisions involved indicate that artificial nutrition is not a single decision but a decision process which is embedded within context. Implications for UK practice and policy are discussed.