‘At death you break up: the bits that were you Start speeding away from each other for ever With no one to see.’
In recent years, both government guidance and relevant stakeholder organisations have been working to raise awareness around psychological and emotional issues facing people who are dying. The impact of a terminal diagnosis in real bio-psycho-social terms has become an area of focus and both clinical and healthy populations have been encouraged to face the taboo of talking about death (Macmillan, 2017; Marie Curie, 2017).
A survey by Macmillan (2017) found that within the general UK population 15% opted out of talking about death. Furthermore, 64% of the population overall felt that we did not talk enough about death in the UK.
Macmillan (2017) found that 94% of people living with cancer were more open to talk about death, with 23% saying that they had thought about their own death ‘constantly’ or ‘often’, with 35% of this group reporting that they had not shared these feelings with anyone. Only 8% had spoken about this to their healthcare team. A further 28% of the total stated that they found it hard to be honest about how they felt about their illness. Reasons for patients with cancer not sharing included feeling uncomfortable about it (15%), and not wanting to bother anyone (22%).
Caring for patients who are dying is both a challenging and demanding role for health professionals. It is intensified by the expectation that staff will manage the emotional and psychological aspects of the situation, which falls especially on nurses. As such, they may find themselves inadvertently supplementing and often reinforcing interventions offered by specialist (psychological) services, with little consideration given to capacity, experience and resources.
The ‘final conversation’, ie, communication between loved ones from the point of terminal diagnosis until death is unique to the individual and their experiences (Keeley and Yingling, 2007). In spite of what we know about the patient distress related to this experience, it also remains somewhat of a taboo with health professionals within specialist palliative care services (Hawkins and Tredgett, 2016; Marie Curie, 2017; Alftberg, 2018). Competing priorities, lack of experience and confidence in broaching the subject of death and dying with patients mean that patients in need of a final conversation about death and dying are often referred to secondary specialist psychology services (Hussain, 2019). However, since specialist services offer input on a limited basis, it can often result in patients not having adequate opportunity to access relevant support. Since the process of death and dying may be a long drawn out one for many patients, this results in a sizeable gap with service provision and care. A time-limited intervention is simply not enough.
The inconsistent nature of the care pathways between specialist services often means that open access to services when needed is not possible. As such, it is important for nurses, as the most ‘consistently present’ professionals in such settings, to be aware of the emotional and psychological themes that may be raised for the patient who is dying. This allows patients to have access to supportive conversations with professionals as and when required.
This article follows a previous one, Using a frame of reference for talking to patients about death and dying, published in British Journal of Nursing, (Hussain, 2019). It includes the reflections of a clinical health psychologist who has worked with patients and nursing colleagues in both palliative and end-of-life (EoL) care, where many final conversations have taken place. It aims to build on existing literature and highlight obstacles to communication, as well as offer practical suggestions to support nurses to facilitate the situation, thereby reducing unnecessary distress for the patient and fill this gap in the care pathway.
The conversations discussed below focus solely on the distressing psychological and emotional aspects of patients' experience of living with death and dying. (It is acknowledged that this may overlap with medical treatment plans.)
It is important to note that the aim here is to enable general nurses in palliative care settings to pick up on and respond to a range of issues that may affect the dying patient. It is not to encourage independent therapeutic intervention.
Barriers to communication
To better understand why conversations around death and dying are not as common as we might hope, it is helpful to look at existing research into the current barriers to communication for health professionals. In general, there is little in this area and the majority of studies tend not to include nurses. Where studies do focus on conversations about death and dying, they centre around medical procedures and related care plans, as opposed to tackling the emotional aspects of the experience (Hussain, 2019). Studies that focus on reasons for not talking to patients about death and dying specifically are rarer still.
Barclay et al (2011) carried out a literature review exploring the fears of patients at risk of death from heart failure and their practitioners. He found that prognostic uncertainty and high risk of sudden death was associated with EoL conversations being commonly being avoided by health professionals.
Alftberg et al (2018) carried out a study (n=8) exploring cancer support workers' experiences of conversations about death and dying. The researchers found that, although staff had the knowledge and skill set required, participants felt that beliefs around the potential emotional strain on patients could be a hindrance for conversations about death and dying. This mirrored findings in a previous study by Emanuel et al (2004), in which staff thought that the conversation itself may cause additional problems for the patients and so they did not engage with them on the topic.
Hawkins and Tredgett (2016) found that the quality of training was an issue raised in their study with medical students (n=7). Participants reported a lack of experience observing conversations with patients and carers about death and dying, and also a lack of opportunities to interact with dying patients during their training. Existing role-play training was experienced as stressful due to peer-to-peer observation and detracted from learning. Hawkins and Tredgett (2016) found that high-fidelity simulation scenarios, in which students were able to apply skills in a simulated ward environment with actors playing the role of carers etc were more realistic than low-fidelity (role-play) scenarios. Students thought that this improved both learning and their confidence in managing conversations about death and dying.
Within a wider context, the research revealed that a number of factors restricted staff 's ability manage the situation effectively. These included a lack of flexibility in the application of skills and training, awareness of personal/culturally-specific concepts and cognitions about death and dying, and a sensitivity to related existential issues (Beck, 1997; Steinhauser et al 2000; Davies, 2002; Barclay et al, 2011; Strang et al, 2014; Hagelin et al, 2016).
We see then, that existing barriers to communication suggest ambivalence and ambiguity around conversations about death and dying due to individual differences, personal capacity, relevant experience, and knowledge of illness trajectories, degrees of risk and training issues.
Anxieties and supportive responses
Common themes facing patients who are dying
Our shared clinical experience reminds us to be mindful of the fact that not all patients will experience a negative reaction (Brayne and Fenwick, 2008). Responses that patients feel peaceful, accepting and even report feeling more aware of the blessings in their lives are not uncommon. However, most patients are likely to have countless distressing thoughts and feelings. Numerous cancer support and healthcare organisations, as well as individual research studies, have identified a range of specific, as well as general psychological issues, that people who are dying face (Rittenberg, 1995; Lee-Jones, 1998; Holland and Reznik, 2005; Block, 2006; Schuman-Olivier et al, 2008; Crunkilton and Rubins, 2009; McLean and Jones, 2007; Macmillan, 2017; National Institute for Health and Care Excellence, 2019; Marie Curie, 2020).
The themes and related anxieties that are commonly raised by people who are dying, based both upon available research and shared clinical experiences, are discussed below:
Information about illness trajectory and point of death
Patients often struggle with being caught between wanting to know, not wanting to know and wishing they had not asked about time frames around death and dying. It is common for patients to ask question but to feel too distressed to hear the answer or to retain any information given. This can result in them feeling insecure, pressured, panic stricken and they may even become emotionally detached because they may be left feeling unable to manage the emotional and practical consequences of having this knowledge.
Facing the reality and time frame
Here, patients may feel confused because they may feel no changes in their health or levels of activity. Due to the patient nearing death, they may feel that they are left with too little time to process and plan. Alternatively, patients may feel they confused because they find themselves in a situation that they have only read about happening to others, and this can lead to a sense of derealisation and perhaps depersonalisation, or detachment. Again, this can affect the way patients understand the information provided to them at this critical time, leaving them feeling overwhelmed and not knowing where to start—they may react by denial, disbelief, trauma, terror and dread.
Bodily changes
The loss of control over the body and the absence of a healing option can result in patients feeling increased anger and distress at their body letting them down. This raises a range of adjustment issues and predictions around the loss of independence, which in turn can lead to self-loathing, overchecking for signs of deterioration and related higher anxiety.
Suicidal thoughts
When patients who have been given a terminal diagnosis wish to end their lives sooner this may seem to be contradiction in terms for professionals. However, this, essentially, relates to the individual wanting control over the state and time of their death. Such thinking is often moderated by ongoing intrusive thoughts and images about deterioration and predictions of pain and, in some cases, loss of personal dignity, as well as a fear of becoming a burden on others. Consequently, it may meant that patients do not focus on present-day activities, relationships or conversations—they may withdraw because they feel increased anxiety, anger and depression, with an ultimate desire to escape the situation.
Family/close relationships
Much like accepting the diagnosis, this aspect of being given a terminal diagnosis raises questions about whether or not to tell family and friends. This is not about managing the emotional and practical consequences of that conversation, such as how and if to say goodbye. Saying goodbye will require additional energy in the forms of conversations, writing letters, videos or visiting friends and family for closure. It can also be accentuated by information we hold about those relationships, such as secrets, regrets, asking for forgiveness, as well as saying things for the first or last time, and a need to be relieved of unnecessary burdens. Because the consequences are not always predictable, patients may either avoid talking with friends and family about the issue, or feel under pressure, manifesting in a sense of urgency, impatience and increased irritability related to any obstacles to management.
Dealing with the reactions of others
Not all responses in this situation are kind or helpful and, given their situation, patients can feel incredibly frustrated, exasperated and angry when having to ‘deal’ with the reaction of their family and friends to their terminal diagnosis. They can feel burdened by having to cope with unwanted reactions, changes in levels of contact and family and friendship dynamics. It can leave patients feeling that they must support others through their grief and be forced to be brave for others, while battling with their own conflicted feelings. This can lead patients to feel misunderstood, lonely, needing space and wanting to withdraw.
Trying to stay in the present
For many patients, once they have been given a terminal diagnosis, their focus immediately shifts out of the current life to death and the next life: they may immediately ‘start dying’ emotionally and giving up on life. Alternatively, they may simply want everything to be ‘normal’ for a few hours/days so they might ‘live’ in the present. This leaves them unable to focus on present activity and needs, causing related problems and leaving them feeling isolated and detached.
Thinking about the funeral
Many patients will start to think about the predicted emotional and practical aspects of their funeral as a way of processing the information. They might consider questions such as ‘What will happen? Who will come? What will they say?’ and this can result in them starting to grieve for their own self, as well as the imagined grief of others. The experience can also raise unresolved issues around the re-living of previous bad endings they had witnessed for people they had known who had died.
In trying to experience death while alive there is much cognitive dissonance, which leaves patients experiencing heightened emotions and distress from ongoing reminders of the reality, which feed in to the issues mentioned previously.
Religion/spirituality
Since many people rely on faith to get them through challenges, a diagnosis of death can often lead to an unexpected crisis of faith. Patients may have many questions, such as ‘How could God do this to me? What was the point of it all? Is this a punishment—what did I do? But I am a good person, so why me?’ The resulting emotions can leave patients thinking that the security of an afterlife is futile, resulting in increased panic, disappointment, anger, despair, numbness and apathy regarding the present or the future. Because patients are left feeling disconnected or unfamiliar with their pre-existing grounded self, this can raise deeper, existential issues that further undermine their emotional resilience.
Finances
This is a practical aspect of having a terminal diagnosis. It becomes pertinent as patients embark on sorting out their affairs. However, the issue is not isolated from pre-existing tensions and complications: at this very challenging time, patients find themselves having to address the matter of making a will and managing any related divisions and fallout from their friends and family. This can leave them feeling anxious, pressed for time and overburdened by everything that still needs to be done, accentuated by a related increased anxiety due to this very real reminder of the reality they face.
Unresolved intrapersonal conflicts
For many patients, this is a time when they process the experience of facing death by evaluating their lives and their relationships, their successes and failures. This can also mean reconnecting with the good and harmful actions (by self as well as others), and addressing irresolution. The negative life lessons patients may be left with can result in them becoming withdrawn and feeling burdened by what they now understand about life. They may feel agitated, lost and disconnected from the possibility of resolving any conflicts, resulting in a possible loss of their relationships, leaving them feeling powerless and consequently apathetic about the remaining future.
Unresolved interpersonal conflict
This theme is linked closely to the one above: unresolved personal conflict can raise issues in and of itself due to the patient's physical and emotional vulnerability. Depending on the impact unresolved personal conflict may have, patients often use this time to evaluate loss (through death, as well as separation), failures, seeking atonement, making confessions, offering apologies and righting perceived injustices. This can leave the patient feeling lost, disconnected, lonely and expressing self-pity due to the limited sense of power and control they think they now have.
Further issues
It is also important to consider the impact of any pre-existing mental health issues on a patient's distress levels.
The themes outlined above do not represent a definitive list, but they capture the key issues that patients may wish to discuss. An important proviso that it is important to be open to having conversations with the patient about more than the topics listed above.
Helpful themes to discuss
Research highlights a range of topics of conversation that the patient who is dying might wish to discuss. Most studies have involved surviving relatives as a way of accessing the relevant issues. In an early study exploring the role of sharing messages related to faith, religion and spirituality (n=30), Keeley (2004) found that final conversations revealed three themes:
A study undertaken 3 years later (n=55) identified five types of message that appear to be important for relational functions, ie for improving the quality of relationships for the dying person and relatives. The primary messages identified were love, identity, religion/spirituality, routine/everyday content, and difficult relationship issues (Keeley, 2007).
Further studies by Keeley and colleagues (Keeley and Generous 2014; Keeley et al, 2014) focused on the experience of the final conversation between adolescents and their parents or grandparents. Advice for the dying person included:
The overarching themes were found to be similar to the three mentioned above (Keeley, 2014).
Although these studies were carried out in conjunction with family members, the three themes identified may be equally applicable in a palliative care setting; they could be used as prompts in the form of gentle inquiry not only for consideration by the dying person, but also as an opening to discuss related issues with families and friends, helping everyone to move towards more complete endings. The above research also reminds us of the importance of including, rather than shielding, children and adolescents from the process.
A study involving older adults (Fry, 1990) explored death and concerns about dying, identifying the coping responses patients used to deal with these anxieties. The findings revealed three categories of fear held by the group (n=178):
Fry (1990) identified the four major coping responses as:
Montross-Thomas et al (2014) developed a group for palliative care patients based on a model of meaning-based therapy developed by the American psychiatrist William Breitbart. The approach combines psychology and spirituality; it encourages patients to find meaning in their experiences and to connect the meanings to their past, present and future experiences and related coping strategies. Montross-Thomas and colleagues found that the meaning-based approach enhanced spiritual and psychological wellbeing and reduced patient distress.
We see that there are a number of common factors important to the dying patient and employing a meaning centred focus may help to improve the experience of conversations around death and dying.
What to do?
The following is an adapted checklist to support healthcare staff in establishing the context of conversation and creating an ‘emotionally conducive’ environment when talking about death and dying (originally developed by Brayne and Fenwick (2008) for families rather than professionals):
Establishing the pre-conversation context
Clinical environmental preparation
Self-preparation
(Brayne and Fenwick, 2008; Strang et al, 2014)
What to say?
Brayne and Fenwick (2008) offered a comprehensive outline for managing the structure and manner of the conversation—again, in the case of families. It has been adapted below for use by professionals who may need to have a conversation with palliative care patients:
Open questions
Using open questions, such as how, when, where, who and what can help the patient express their emotions and will show that you are listening, but be careful when posing why questions because they can seem confrontational. It is better to ask: ‘What makes you say/do that?’ or ‘What is the reason for that?’
Direct questions
These questions are helpful, if the patient is confused and needs some clarity and direction. For example: ‘Does it help to talk about this’ or ‘How can I best support you?’ Or the professional could invite more detailed inquiries by asking: ‘What are your fears about dying’ or ‘Have you spoken to your family or not’?
Indirect questions
Using indirect questions can help patients who might be more fragile and need containment. The professional could use the statements as set out as above, but they should usually be preceded by the words: ‘I wonder if … ‘or ‘Perhaps you would like’, or ‘Is there anything …’ ‘Maybe this means …’
Leading questions
Using leading questions can be helpful in supporting the patient to move forward with either discussions or necessary related action; have you thought about saying… or how might you manage that situation?
Short statements
These can be useful if the patient does not wish to talk or is feeling overwhelmed. They allow you to stay connected, without adding further justifications or explanation. For example, ‘When and if you need to talk, please let me know’ or ‘We are here to support you whenever you need’.
Brayne and Fenwick (2008) add the proviso that there is no need to talk all the time, and it is important for staff to be aware that sometimes just continuing to be yourself and professional is helpful in and of itself.
Conclusion
Talking about death and dying is a challenge for health professionals. Although there is guidance to encourage a dialogue, the conversations themselves are generally not forthcoming. In considering the barriers to communication, it is important for health professionals to be familiar with the issues facing the dying patient and refer to the management strategies outlined above. This would help them to offer support to patients when required. It is hoped that the suggestions may facilitate a difficult process, reducing unnecessary distress for the patient and improving this aspect of patient care.