VOL: 98, ISSUE: 43, PAGE NO: 34
Antonia Dean, BSc, RN, is staff nurse, Ellis ward, Royal Marsden Hospital, London
Nurses have a crucial role to play in helping patients who have a terminal illness to accept their condition. They are in the privileged position of being able to listen to patients talking about their hopes and fears, and their experience, knowledge and skills may enable patients and families to explore their feelings and come to terms with the situation.
However, research suggests that a proportion of patients do not wish to talk about the terminal nature of their condition (Hunt and Meerabeau, 1993). They may cope by avoiding having to focus on their prognosis (Rifkin, 2001) or seeking escape in light-hearted conversation. In spite of this, authors such as Flaming (2000) have urged nurses, as a kind of blanket rule of good communication, to discuss with patients their feelings about their prognosis.
This article proposes that nurses develop communication skills that not only allow them to talk sensitively about death and dying with patients but also give them the capacity to assess whether or not this is what the patient wants.
It is generally accepted that effective communication is vital when nursing any patient, let alone those with a terminal illness. However, the evidence suggests that many nurses fall short of an acceptable standard of care in this area and spend little time communicating with patients (May, 1990).
A decade earlier, Webster (1981) observed nurses communicating with dying patients in four English hospitals. They often displayed ‘blocking’ behaviour, avoiding intimate conversations by changing the subject, ignoring cues, making jokes or tailoring their responses to the least distressing aspect of the issues raised. Such light-hearted interactions allowed the nurses to sidestep potentially difficult conversations, keeping them on emotional ‘safe ground’.
Ten years later Wilkinson (1991) observed similar behaviour in 54 cancer nurses. Their blocking behaviours predominated over facilitative behaviours. For example, the psychosexual impact that gynaecological, bladder or bowel malignancy may have had on the lives of patients was never discussed during the observed interactions. More recent evidence confirms this (Costello, 2000).
This deficit in nursing care has interesting implications. Field and Copp (1999) suggest that, since the 1960s, western culture has been moving towards open communication about death and dying, with paternalistic notions that patients would be too upset to discuss death slowly changing.
Many articles on communicating with terminally ill patients acknowledge that nurses are often not willing to talk to them about death. Such articles often outline how best to talk to a dying patient. For example, Flaming (2000) believes that more open communication will follow if any reticence to using the words ‘death’ and ‘dying’ can be overcome.
Flaming says that nurses should not be afraid of labelling someone as ‘dying’ because this ‘acknowledges the situation and gives permission for the performance of private, family or public rituals’. He adds that hope will not be lost if death is openly discussed, and that psychological wounds that are opened up will be temporary and will heal faster. However, the argument that a patient’s experience must be labelled explicitly as ‘dying’ ignores how they may wish to view it.
It also ignores the fact that people may have accepted the situation on the basis of their own view of events. It is necessary to communicate with patients and their families to determine their views, but it is debatable whether openly labelling a person as dying is the only way to do this.
A common implication seems to be that nurses must improve their communication skills so that they can talk to patients about sensitive topics (Wilkinson, 1991). But even if all barriers to effective communication could be removed, it would still be inappropriate to expect patients to confront feelings they do not wish to confront.
The scant literature on patients’ psychological, emotional and spiritual assessment, particularly in the care of patients who are dying, suggests that nurses lack the ability to elicit relevant information (Heaven and Maguire, 1997). Wilkinson (1991) found that those who displayed predominantly blocking behaviour made the least accurate assessments.
Various authors have suggested frameworks for spiritual assessment. Govier (2000) built an informal tool around ‘the five Rs of spirituality: restoration, relationships, religion, reason and reflection’. But, as with several similar guides, it has not been tested thoroughly in clinical practice.
Intuition may play a large part in assessment, but does not sit comfortably with evidence-based practice. A formal tool may standardise something that should be highly individual, and on a busy ward it could deteriorate into a brief question-and-answer session and become simply another form to fill in on admission. On the other hand, a tool might ensure that this area of care is not ignored. In circumstances such as these nursing can be seen as a balancing act because nurses must constantly readapt their approach to patients as patients constantly adapt to their changing situations.
Elsdon (1995) suggests that health professionals may avoid exploring sensitive issues with patients in case the patient asks questions that have no easy answer. What is crucial is not being able to answer the unanswerable but to listen and simply ‘be’ with the patient. This should help the nurse to determine whether the patient is ready or willing to discuss death and dying.
Hope and dignity
Fostering hope might not be the most obvious aspect of caring for someone with a terminal illness. Much of the literature on the psychological needs of patients receiving palliative care focuses on how to break bad news. It is vital to remember that once the crisis of the initial diagnosis has passed, nurses have a role to play in helping people not only towards a dignified death but also to find hope in life.
Janssens et al (1999) consider hope as ‘conditional to a life worth living’. Hope can change as circumstances alter. One hope, such as hope for a cure, may become unattainable but may be replaced by another. By providing clear and honest information when and if it is requested, and a listening, supportive ear, nurses can help to channel hope towards a more achievable goal. But they must have the skill to nurture a belief that the final few months of life can be rich and to help patients plan the short-term future.
For patients in a hospice or hospital, a flexible approach to visiting hours could benefit those who gain hope from the presence of their family. Time spent helping patients to wash, shave or apply make-up might reassure them that they can maintain their physical appearance as the illness progresses. Talking to patients about their hopes will enable nurses to write care plans with explicit goals that have been identified by the patient rather than the professional.
The role of conversation
Facilitating hope and optimism may seem a world apart from blocking patients from expressing their feelings, yet Jarrett and Payne (2000) suggest that some researchers confuse the two. The authors express the view that much of the research condemning nurses’ communication skills devalues the art of maintaining optimism.
Their study revealed that patients were not prevented from making negative comments or discussing serious issues, but that conversations continued until a more positive note was struck. This was not purely nurse-led: patients also used the tactic. The authors believe that the chatty, cheerful style helped to ‘sustain the institutional reality’. In other words, an institution, be it a hospice, nursing home or hospital, must have a bearable atmosphere.
Although it is important to focus on times of crisis and how nurses can be equipped to deal with them, it is also vital to acknowledge the staff’s and patients’ needs for respite. In addition to the value of what they term ‘therapeutic talk’, Langley-Evans and Payne (1997), highlight the need for ‘social talk’ in palliative care. Chatting and joking in the way ‘ordinary’ people take for granted may help to foster the hope that the illness has not taken over the patient’s life.
In a letter to the British Medical Journal, Rifkin (2001), a psychiatrist who contracted a life-threatening illness, wrote: ‘What I find interesting is how I can spend most of my time not thinking about my prognosis. Is this denial or wisdom? - Most of us prefer ignorance about how our sausage was made.’
To return to the central theme: if someone such as Rifkin prefers to live each day as it comes without dwelling on his prognosis, his nurses should be able to appreciate his choice. Without assessing that this is the case, the nurse might, with the best intentions, embark on an unsolicited conversation about prognosis. For one patient this might be the perfect catalyst to release fears and emotions, but for another it could be counterproductive.
Research on coping with a poor prognosis tends to be either personal testimony or qualitative studies with few participants. This reinforces the notion that qualitative, evidence-based practice can be difficult to use in this area. The literature may enlighten the reader, but cannot provide a definitive guide. In dealing with spiritual and emotional matters, quality care must be individualised rather than being shaped by what the patient ought to want or feel.
This article suggests that no single rule can be applied to providing spiritual and emotional care for patients with a terminal illness. People vary widely in how they approach dying and how they choose to interact with nurses about it. It is often advocated that improving nurses’ communication skills might lead to better patient care, but it has also been suggested that such skills could be put to use by attempting to establish how the individual is coping with the illness. Then, and only then, can the nurse justifiably embark on an informed mode of interaction that is appropriate, therapeutic and meets the needs of each patient.