The experiences of the older people in this study will be discussed by referring to Bridges phases of transition. Bridges (2004) states ‘only when you get into people’s shoes and feel what they are feeling can you help them to manage their transition’ (p. 59). However, this study illustrates that transition is not a linear process, but complex cycles of transition that may be overlapping at any one time. As such it provides an opportunity to understand the experiences of older people in a different way and consider how transition, as overlapping cycles of transition, may be a useful one for patients, carers and health professionals.
Endings, the neutral zone and new beginnings
McNamara (2001) noted how older people preferred not to think about death and dying, but in this study older people did acknowledge that as they got older their life would at some stage end. Living with this understanding involved different approaches to coping, such as avoiding thinking too much about their situation. That older people rarely give a thought to dying is not always a sign of denial. Buetow & Coster (2001) referred to avoidance and disavowal, with the latter being perceived as healthy denial and a process used by patients to reduce emotional strain and gain hope. They identified three coping strategies; avoidance, disavowal and acceptance. Contrary to this, participants in this study demonstrated that older people could be using each of these at the same time to cope with different transition experiences in their lives, not just living with heart failure. Endings for the participants were not only about their thoughts on dying, but also about the multiple losses in their lives which were occurring or had occurred at different periods for them, such as partners, friends, homes and hobbies.
Seymour et al. (2005) noted how the older person dealt with the uncertainty of whether or not they would cope with each new day. Living with uncertainty was not only associated with endings or losses, as in the neutral zone that Bridges (2004) refers to, but in thinking about new beginnings such as, moving to residential accommodation or feeling hopeful about whether they would receive good care as their dependency increased. Participants were active in trying to prevent further deterioration not only in their heart failure, but to manage their lives with other conditions, manage their medications and make adjustments to their routines. This was referred to by Willems et al. (2006), as ‘patient work’, tasks a person performs to continue living. Symptom control issues were of concern to the older people and the research (Barnes et al. 2006b) discussed earlier in this paper highlighted that this is still problematic. Uncertainty increases with inadequate symptom control, but also does not meet the expectations of the older people in this study about receiving good care from health professionals. How can we ensure that symptoms are controlled? That Palliative Care and improvements in end of life care should be incorporated in the management of heart failure is not a new idea and has been identified by a number of researchers (Anderson et al. 2001, Ward 2004, Horne & Payne 2004, Aldred et al. 2005, Gott et al. 2007a, Barnes et al. 2006a,b), in government policy (Ministry of Health 2001) and in heart failure guidelines (The Cardiac Society of Australia and New Zealand 2002). The older person often has complex needs, and as identified has already developed positive relationships with certain health professionals which we should work to maintain. This would acknowledge the strengths of the relationships they have, limit further losses and uncertainly and provide the continuity of care identified as important to them.
It is suggested that rather than thinking about new beginnings as a final phase of transition, it would be useful to think of this at the beginning and as a goal for health professionals in supporting and working with the older person. The new beginning could be about working with transition as a framework that could be discussed with the older person at the beginning and as an approach to supporting them as they become more dependent and face end of life. If we consider that new beginnings can be about hope and minimising fears, then this shifts thinking. In acknowledging what transitions the person is experiencing; what are the losses, past, present and possibly in the future. Focusing on how the person is managing these may be a way of promoting self-esteem and self-worth. Identifying approaches for those who are not managing their transitions is about assessing and recognising these.
There is an association between death and ageing, but also the view that, ‘old people know how to die’ (Lloyd 2004, p. 237). While the participants in this study may have acknowledged that they would die at some stage, they were concerned about the process of dying and how that would be managed. But their concerns about dying were overshadowed by those of increasing dependence; ‘dependency remains a greater spectre than death’ (Charmaz 1991, p. 80). While dependency is a normal part of the human experience Lloyd (2004) argues it has been overshadowed by the concept of active ageing. This focus on independence and self-management can limit health professionals’ abilities to support dependence. Lloyd (2004) questions how we can preserve older people’s dignity, privacy and comfort at this stage. Within the present study the complexity of their transition experiences can be identified and approaches to supporting them in the management of these can provide some guidance alongside their expectations about receiving good care at the end of life. Being neglected, feeling a burden and inadequate symptom control were the major concerns of the older people. This was further compounded by their fear of becoming bedridden. The fears that the older person may have can be a sign of any phase of transition occurring. Fear of being neglected was a concern of participants in this study. Neglect can come in a variety of forms, physical, social, emotional and spiritual. Grant et al. (2004) found that while General Practitioners acknowledged the importance of spiritual issues, most did not feel they had the skills or time to respond to meet this need. Emotional neglect can arise by feeling abandoned by health-care professionals; especially by those they have developed relationships with over the years. Physical neglect can arise in numerous ways, by just being lifted and moved in an inappropriate way, as a number of participants in this study recounted illustrated this. Social neglect can arise when the social dimension is not part of the health professional’s assessment. In their longitudinal study, Murray et al. (2007) found that the physical decline that occurs with advanced heart failure was linked with social and psychological decline. Neglect may be about not even acknowledging the losses or minimising the losses the older person may be experiencing.
Self-perceived burden has been associated with a number of negative outcomes, such as loss of dignity, depression, will to live, and request for physician-assisted suicide (Chochinov et al. 2005). Feeling a burden has also been associated with not being able to accept dependency. Ganzini et al. (2003) found that patients who they viewed as independent or valuing independence dreaded the thought of becoming dependent. The notion of dependence not only about physical dependence, such as losing the ability to walk, but other factors, such as having to move to a nursing home. These patients were described as inflexible and determined to remain in control requesting physician-assisted suicide.
Fatigue and dyspnoea are two common symptoms in heart failure and either of these will result in increasing degrees of dependence, as the disease advances more time will be spent on bed rest.
Health professionals can support the patient as they become more dependent, yet still have a focus on independence. But this should not be at the expense of enabling the person to manage increasing functional decline, dependence and the feelings associated with this. Understanding that patients may have feelings of being a burden and how this may limit their requests and expectations of health-care professionals is paramount.
There are implications for health professionals when patients make requests to them to end their lives. Rather than ignoring these requests or minimising them we need to explore what is really underlying the request. The sense of being a burden can arise from how the older person sees himself or herself as having no more value and feelings, such as worthlessness associated with loss of status, respect and dignity.
This study and the growing body of research (Horne & Payne 2004, Barnes et al. 2006a,b, Murray et al. 2007, Selman et al. 2007) exploring the impact of heart disease on older people, illustrates that discussions can take place and that older people can express their fears and concerns and their needs can be explored. Guidelines such as the ‘Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers’ (Clayton et al. 2007) have useful suggestions for types of questions. Based on the experiences of the interviews in this study, simple but critical questions that can be asked include, what is really important to you at the moment? What are your goals? What are your hopes and fears?
Some of the participants in this study had already had conversations about their condition deteriorating and making decisions about their place of care. For these people, advanced care planning could be an approach to support their preferences, but would require further research and investment within primary care. Considering their needs and other research discussed, a one discipline lead approach is limiting, as there is a need for integrated approaches across primary and secondary care. If people prefer to remain at home as in ageing in place programmes (Ministry of Health 2002), the transition experiences of their partners and carer’s, particularly as these people are more likely to be older themselves would need exploring.
This is a study undertaken in one large urban area of New Zealand and as such is limited by its absence of the voices and experiences of those people living in rural communities. Although the number of participants was 25, this decreased over the study and only 17 participants completed all interviews. Based upon other research (Gott et al. 2007b) it was expected that there would be some loss of participants. However, 79 interviews were conducted reaffirming the reliability and consistency of the themes. It is acknowledged that as an emerging framework, more research is required to determine the usefulness of the approach to transition discussed in this paper.