Estimates from the WHO (2007) indicate that 7·6 million people died of cancer in 2005, and 84 million may die of the disease in the next decade. Over 70% of all cancer deaths occur in countries where health care resources are limited. Up to 10% of people develop cancer as a result of an inherited genetic predisposition, and specialist palliative care services in industrial societies are increasingly caring for patient with inherited conditions requiring end-of-life care. The 20th century was remarkable in the successful development of a large range of new health technologies (such as blood transfusions, radiotherapy), pharmaceutical agents (such as antibiotics, insulin and antiretroviral agents) and preventative health care procedures (such as immunisation and various types of genetic screening). Alongside this, recent advances in genetics following the sequencing of the human genome are progressively reaching all aspects of health care (Metcalfe & Burton 2003). Owing to the high incidence in the population, there will be some history of cancer in virtually every family. Moreover, there has also been widespread media coverage around the topic of cancer genetics, which has led to a heightened awareness among the population about the possibility of an increased susceptibility to cancer (Skirton et al. 2005, Lillie 2006). Many individuals hence seek access to available prevention strategies. As a consequence of all these factors, practitioners will require an understanding of the impact that genetics may have for patients and their families. The need for the education of health care providers about genetics, and its integration into clinical practice is, therefore, a requirement globally (Monsen et al. 2000, Jenkins et al. 2001, Metcalfe & Burton 2003).
The survey by Metcalfe et al. (2009) is, therefore, important and timely in that it is the first study to explore and examine the genetics education needs of nurses working in adult hospice settings, either nationally or internationally. In the study, questionnaires were sent to a stratified sample of hospice nurses in England and Wales. Using Likert scales, nurses were asked to rate the importance of and their confidence in undertaking a range of scenario-based activities that accompany caring for a patient and family affected by a genetic condition in the hospice setting. Follow-up telephone interviews were carried out with hospice nurse educators to explore emerging issues (Metcalfe et al. 2009). The mean response rate of 29% was very low, though the authors do acknowledge this in the limitations. Mangione (1995) categorises response rates as follows: 85% or above ‘excellent’, 70–84%‘very good’, 60–69%‘acceptable’, 50–59%‘barely acceptable’ and under 50%‘unacceptable’. This focuses attention on the need to obtain a high response rate because of the likelihood of non-response error with lower rates and can be a useful aid when critically reading survey research findings. The differing perspectives on the importance of genetics in hospice care may have influenced the response rate and, consequently, caused participation bias. It may, therefore, be useful to consider the characteristics of those who failed to respond, to form a clearer picture of the current ‘state of play’. Palliative care surveys can achieve a good response rate with health professionals, and there are several strategies which can be employed to increase the response rate (c.f. Addington-Hall & McCarthy 2001), although none of these were reported as being adopted in the survey by Metcalfe et al. Interestingly, however, some of the initial responses from the Directors of Nursing Services at various hospices indicated that they did not see genetics as relevant to hospice care. This constitutes an important and arguably worrying finding in itself and one that is congruent with other studies, despite a growing body of evidence of the role and importance of education in promoting competent practice that incorporates genetics. For example, in a recent literature review, Burke and Kirk (2006) concluded that deficits in education provision and confidence in dealing with genetics are common across many countries. Similarly, an earlier survey of higher education institutions in the UK offering preregistration courses for nurses, midwives and health visitors revealed that little time was dedicated to this topic in the curriculum, with <10 hours spent on average throughout the course (Kirk 1999). Equally, a similar picture emerges from a survey of postregistration nurses in relation to education provision on genetics (Metcalfe & Burton 2003). A sample of 38 higher education institutions was surveyed in 2002 through telephone interview and email. Of the 38 institutions, 19 said that genetics was not included in any of their postregistration programmes. The amount of time spent on genetics in both nursing and midwifery programmes varied greatly, from 2–75 hours, and the topics covered were also variable, often based on the expertise of individual lecturers. This study revealed evidence of the low priority, and status genetics is afforded in the curriculum of postregistration nursing, midwifery and health visitors in the UK.
Despite this, new initiatives are underway to support genetics education and its integration, and significant progress has been made in the identification of learning outcomes (Jenkins et al. 2001, Calzone et al. 2002). Metcalfe et al. identified the correlation between the extent of genetics education of a particular health care professional and their confidence in providing care related to such issues. The study outlines various teaching methods currently used for genetics, and the authors have suggested that a psychosocial approach to address the educational requirements of hospice nurses would be appropriate. However, it could be argued that it is beyond the scope of this study to define a specific educational format (Metcalfe et al. 2009), and further research is needed on the most effective forms of educational delivery (Swank et al. 2001, McGregor 2005). For example, reflection on experiences of caring for dying patients and their families has the potential to become a reservoir of personal development. It can also be one valuable way in which nurses learn to provide high quality and sensitive care. Wong (2001) reports on work with student nurses in Hong Kong, in which the latter attended problem-based learning sessions focused on group discussions of some fictional scenario’s involving death and dying. The students documented their learning in reflective diaries, focusing on the care they gave to dying patients. Within these journals, there was compelling evidence that the nurses experienced anxiety about death and felt inadequate in dealing with dying patients. However, the dual processes of engaging in problem-based learning and of writing about their clinical experiences emerged as an effective strategy to enhance their awareness and sensitivity to dying patients and to facilitate their formulation of appropriate care plans for the dying.
Changes in nurse education, knowledge and concepts of the professional role in the latter part of the twentieth century have opened up new possibilities regarding the manner in which nurses engage with and ‘know’ patients. This is particularly relevant in the context of the application of genomic research and how this may affect the practice of palliative care. May (1993) argues that nurses now seek to ‘know’ patients in terms of ‘foreground’ and ‘background’ knowledge. ‘Foreground’ knowledge relates to the clinical definition of the body: this allows nurses to establish what nursing work needs to be undertaken. ‘Background’ knowledge concerns the person as an individual, and it is this engagement of nurses with a person who is a complex social being with a unique identity that is arguably new. Although there are obvious benefits to patients, this can also present a challenge to nurses because sensitive communication and openness to the person’s experience of suffering is required (Ingleton & Seymour 2008). It is also, potentially, more invasive for patients because they are expected to reveal not only their physical bodies, but also their thoughts, feelings and existential concerns to nurses.
Metcalfe et al. established that nurses generally recognised the importance of genetics with regard to the care they provide, but that the majority felt less than confident in dealing with such patients. The important need for the provision of genetics education to hospice nurses has therefore become apparent to help them care for and support both patients who are approaching the end of life and their families, struggling with the issues surrounding an inherited genetic condition. Although the implications of advances in genetics for health care and nursing practice have been widely acknowledged (Burke & Kirk 2006), in general, there is little research about the discussion of genetic issues in the palliative care setting. This study goes some way to filling this gap and places this important issue in the spotlight by raising the profile and relevance of genetics for nurses and those commissioning and providing health care education.