In their response, Ingleton and Green (2010) make some useful observations on the implications of our study reporting hospice nurses’ understanding of genetics (Metcalfe et al. 2009). Here, we take the opportunity to reflect on their review and to emphasise the reasons the work is so relevant to end-of-life care.
Hospice care takes a holistic approach to care recognising the needs of the family alongside that of the patient. To continue to provide highly valued care suggests that hospice nurses need to be aware of families’ needs and empathise with the difficulties they face, and recognise where they might be more vulnerable. Families affected by inherited genetic conditions do have special support needs but presently, these can go unrecognised. Hospice nurses already care for patients affected by hereditary cancers, which affect up to 10% of people diagnosed with breast and bowel cancers. With policy changes in end-of-life care (Department of Health 2008) influencing hospice access, it is anticipated that staff will increasingly care for more families affected by rarer conditions, inherited genetically, such as Huntington’s Disease and Cystic Fibrosis.
However, some nurses have suggested that genetics does not have relevance for nursing (Metcalfe & Burton 2003) or that it is only within the realm of medicine Lillie (2009). It is often assumed that by the time patients reach the hospice, it is inappropriate to discuss inherited genetic risk because of concerns about upsetting patients and their families. Our study sought to raise awareness of risk and identify the readiness of hospice nurses to manage changing expectations.
The low response rate to our questionnaire was highlighted as a weakness in both our own report and in Ingleton and Green’s (2010) commentary. At the outset, we had considered and consulted on a myriad of sampling strategies to get the optimal sample, which reflected a national distribution across England and Wales. Distributing the questionnaires via a third party, the directors of nursing and nurse education leads in the hospices appeared to be the most pragmatic route of obtaining the widest sample. These individuals agreed to participate, but as our findings indicate, several of these third parties later admitted questionnaires and reminder letters were not distributed. Some reported that, despite agreeing to participate initially, they did not recognise the relevance of genetics to their nurses’ practice, even though through the study we tried to demonstrate the relevance of genetics to hospice nurses through everyday, familiar scenarios.
Many of the nurses who did complete the questionnaire commented how they had commenced the questionnaire believing genetics has limited if any place in their practice. This restricted view of nurses in recognising the implications of genetics upon their practice also probably explains our low response rate (29%); nevertheless, 328 took part. On completing the survey, many nurses participating had changed their view; they wanted access to courses and recognised a need to reflect on their current practice. In the meantime, growing evidence from our own and other studies is increasingly indicating the need for hospice nurses and others working in end-of-life care to reconsider their view (McAllister et al. 2007, Metcalfe et al. 2011). Therefore, whilst sampling limitations in our study are acknowledged, this is the largest study to date of its kind with this group of nurses and offers a large level of insight into hospice nurses views and attitudes towards genetics at all levels of seniority.
In general, end-of-life care for individuals and their families affected by inherited genetic disease (IGD) has received little investigation (Peterson 2005, Biesecker & Erby 2008) despite the resounding implications for all consanguineous relatives and their partners. Limited empirical evidence suggests there is an emphasis on symptom control and psychosocial support for the patient (Simpson 2006, Travers et al. 2007). By contrast, studies suggest that surviving family members’ experiences and observations of their relative’s end-of-life care has a significant impact on their own coping and adapting to living with the genetic condition and its risks (McAllister et al. 2007, Metcalfe et al. 2011).
Independently of each other, early death or multiple deaths in a family are known to affect people’s grief reactions (Kissane et al. 1998, Tomarken et al. 2008). For families affected by genetic conditions, both early death and multiple deaths are likely to be an important component of the family’s experiences. From families’ perspective, life-limiting genetic conditions result in ‘early’ or ‘untimely’ death and there may be several ‘young’ deaths in the same family generation and/or subsequent ones. We all know we will die; however, members from these families have to face that realisation much sooner. They know the likely cause of their own or a loved one’s demise and have often observed the type of death likely to be experienced in other family members. Issues around bereavement are therefore commonly observed (McAllister et al. 2007, Metcalfe et al. 2011), and complex grief reactions often described in families (Lillie et al. 2010, Metcalfe et al. 2011).
Anticipatory fear and grief are not uncommon in these families. Carers may be partners or children of the individual affected by the genetic condition. If they are the child of the dying person, they may be affected or at risk from the disease and have to cope with the likelihood of their own future care need, whereas the partner of the dying person has to consider the possibility of caring for their child(ren), if their offspring have inherited the disease-causing gene. Carers may be more vulnerable to complex grief reactions because of the need for ongoing care commitments across generations.
It is essential that families are supported and offered quality end-of-life care because highly diverse grief reactions tear families apart. Further, unresolved grief reactions affect how parents prepare their children for living and coping with the genetic condition. Experiences of bereavement and unresolved grief have consequences for how and when parents talked to their children about the genetic condition and its risk (Metcalfe et al. 2011), and this potentially impedes young people’s reproductive decision-making (Fanos et al. 2001, Metcalfe et al. 2011) and subsequently their coping. The quality of care at the end of life therefore has a resonant impact across generations, and successful management leads to more cohesive families with a higher resilience to the effects of genetic disease on family life (Sobel & Cowan 2000, 2003).
Ingleton and Green (2010) highlight the importance of considering how educational deficits are addressed. This issue was beyond the scope of our study, but we have been able to feed our findings directly into the NHS National Genetics Education Development Centre (http://www.geneticseducation.nhs.uk), which is taking the lead on developing optimal ways of developing flexible education materials for all health professionals to learn more about genetics. We agree with Ingleton and Green (2010) that it is important to consider multiple ways of learning and critically, embedding this in the agenda for managing end-of-life care for nurses working in the hospice sector and palliative care more generally.
The care and support hospice nurses provide is essential to helping all individuals and families cope with dying, death and bereavement. The care received lingers long in the memories of all surviving family members. Care and support of families affected by IGD is even more poignant at end of life because of the consequences it has across the generations.