Visit www.wileyfundamentalseries.com/medicalnursing and read Reflective Question 7.5 to think more about this topic.
Communication with patients as they near their end of life presents many challenges to nurses and other members of the multidisciplinary team: (1) not knowing what to say; (2) being uncomfortable with the questions that they may be asked; (3) being unsure of how much the patient may understand;
(4) fear of saying something that might upset the patient; and (5) time limitations. Becker (2010, p.
104) succinctly captured the reasons why professional caregivers may avoid communication with the dying as follows:
Fear of the unknown situation
Fear that our lack of knowledge may cause more problems Fear of unleashing an emotional reaction
Fear of being blamed Fear that we may get upset
Patients who are nearing their end of life have invariably progressed through an experience or jour- neyed through illness. Slevin (2006) highlights the importance of taking into consideration a number of variables that influence the illness experience in terms of responses to the illness. These include
‘who is experiencing the illness’, ‘what is being experienced’, ‘how the experience is being responded to’ and ‘when and where’ the experience has occurred.
Pollard et al. (2002) highlight the importance of good communication skills as being integral to the support of patients and families within a palliative care context. These skills include patient and family support, effectiveness within teamwork, facilitating the transition within the illness trajectory and impacting on treatment outcomes. As patients and families experience a range of emotions related to impending loss and anticipatory grief, it is not uncommon for communications to break down at this sensitive time.
Heaven and Maguire (2003) provide a comprehensive framework within which to address commu- nication issues with individuals approaching the end of life. They highlight that a common cause of communication breakdown, particularly in the provision of end of life care, stems from ‘selective atten- tion’, ‘switching’, ‘offering advice or reassurance’, ‘passing the buck’ and ‘using jargon’. While each of
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those actions may be unintentional, it is crucial that healthcare professionals are conscious of the manner in which they communicate with dying patients and their families, so that the transition towards dying is made as smooth and as dignified as possible. It must also be kept in mind that patients’
families are coming to terms with impending loss and are experiencing a variety of emotions and concerns as they witness their family member’s condition deteriorating.
As death approaches, the patient’s ability to communicate verbally diminishes. This can be a difficult time for family members as they experience this loss. Despite the absence of this ability to talk, com- munication with the patient should continue.
It is not uncommon for patients to ask difficult questions towards end of life, such as ‘How long have I got?’, ‘Am I dying?’ or ‘What will my death be like – will it be painful?’ These difficult questions can pose challenges to healthcare professionals as they attempt to answer them in an honest manner. It is also important for them to be answered, balancing hope with honesty and empathy (Clayton et al.
2009). In an attempt to facilitate good practice in breaking bad news, Buckman’s (1992) Six Step Pro- tocol (Table 7.1) outlines key guidelines in order to break bad news effectively; this, when used as a guide to breaking bad news, helps the nurse to take a sensitive approach to addressing a difficult situation.
Gilbert (2006) has succinctly captured the common concerns for relatives when a family member is approaching the end of life. These include the patient’s diminishing fluid and food intake, the patient’s distressing symptoms, how the patient will die and how they will recognise it, the effectiveness of medications and whether medications will hasten their relative’s death. When addressing the needs of families in care of the dying, it is crucial to clarify the nature of families so that family-centred care can be initiated throughout this time. Farrelly (2009) acknowledges that the terminal illness within
Table 7.1 Six Step Protocol for breaking bad news
Step Activities/processes
Getting started Getting the physical context right
Where?
Who should be there?
Starting off Finding out how much the patient
knows The patient’s understanding of the medical condition
The style of the patient’s statements
The emotional content of the patient’s statements Finding out how much the patient
wants to know Phrasing the question
First reactions Second thoughts Sharing the information (aligning and
educating) Decide on your objectives (diagnosis/treatment plan/
prognosis/support)
Start from the patient’s starting point Educating
Responding to the patient’s feelings Identify and acknowledge the patient’s reaction Planning and follow-through Planning for the future
Preparing for the worst and hoping for the best Supporting the patient
Making a contract/follow-through
‘Are there any (other) questions you’d like to ask me now?’
Data from Buckman, R. (1992) How to Break Bad News: A Guide for Health Care Professionals. University of Toronto Press. Toronto.
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family members is one of the most distressing experiences that affect families. There is no doubt that families go through a range of emotions, suffering, anticipatory grief and impending change in the face of the death of a family member.
Caring for the family of a dying patient forms part of person-centred and family-centred care. Fami- lies may be profoundly affected by the prospect of an impending death, which, as Kristjanson et al.
(2003) highlight, can result in changing roles and responsibilities within the family circle. Support for families commences as soon as the patient is admitted to the ward, and its intensity increases as the dying trajectory continues. It is not unusual for family members to react and respond to impending loss in different ways, ranging from anger and denial to bargaining, depression and acceptance, as espoused by Kübler-Ross (1969). While much research has been undertaken that attempts to capture the needs of the families of dying patients, Davies and Steele (2010, p. 614) suggests that families’
responses to the impending death of a family member may be described as the ‘transition of fading away’, which centres around seven key experiences they encounter (Table 7.2).
Table 7.2 The transition of fading away
Redefining Shifting from ‘what used to be’ to ‘what is now’
Burdening Extra load in caring for a family member Waiting for the family member to die
Struggling with paradox Wanting to care and wanting to lead a normal life Giving up and being tired of fighting
Contending with change Changes in relationships, roles, socialisation and work patterns Searching for meaning Looking for meaning in order to help understand what is actually
happening during the dying process Living from day to day Making the most of today
Enjoying the time left with the family member Preparing for death Meeting the patient’s wishes
Visit www.wileyfundamentalseries.com/medicalnursing and read Reflective Question 7.6 to think more about this topic.
As there is no gold standard framework for communicating with families as they face impending loss, Woodroof (2004, p. 27) has provided a framework that may be useful, particularly in situations where the information being delivered concerns a poor prognosis. Strategies include the following:
•
Explain the uncertainty in estimating an individual patient’s response.•
Give a realistic time range.•
Provide realistic hope – helping the patient to achieve what is important for them.•
Recommend that family relationships and worldly affairs be attended to.•
Be prepared to answer questions about the process of dying.•
Provide ongoing support and counselling.•
Reassure about continuity of care.By addressing family concerns and issues around end of life care using the above framework, it is likely that family members will feel more included and supported throughout their relative’s dying trajectory.