In his poem When I Die, the 13th century Persian poet Mewlana Jalaluddin Rumi wrote:
‘When for the last time you close your mouth your words and soul will belong to the world of no place no time.’
As Rumi observes, the mystery of death is indeed without time or place. However, dying itself is an experience that health professionals are increasingly trying to contextualise and understand, with the aim of easing the distress of the mystery, both at the point of death and its related consequences to life and living. In doing so, health professionals support their patients to take control and achieve a sense of clarity, acceptance and understanding, not only about the life lived but also its imminent ending.
The importance of talking openly to terminally ill and end-of-life patients about death and dying has increasingly garnered attention over the past few decades (Seymour et al, 2010). Key national organisations such as Marie Curie, Macmillan Cancer Support and Dying Matters, among others (see Box 1), have encouraged and supported a range of programmes designed to promote transparency between staff and patients around thoughts and feelings about death and dying. These have included media adverts and news articles, as well as conferences and multidisciplinary training aimed at promoting awareness among professionals. They have also worked with government bodies to ensure that policies for terminally ill patients include provision for their psychosocial needs. However, there is no clear frame of reference to support staff in supporting dying patients, and directions and details are left largely to individuals and teams to identify and implement.
| British Heart Foundation: https://www.bhf.org.uk/informationsupport/heart-matters-magazine/wellbeing/end-of-life-care |
| British Lung Foundation: https://www.blf.org.uk/support-for-you/end-of-life |
| Department of Health and Social Care. End of life care strategy: promoting high quality care for adults at the end of their life. 2008. https://tinyurl.com/o38nlej |
| Department of Health and Social Care. One year on the government response to the review of choice in end of life care. 2017. https://tinyurl.com/y7s98e3m |
| Dying Matters: https://www.dyingmatters.org/ |
| Macmillan Cancer Support: https://www.macmillan.org.uk/information-and-support |
| Marie Curie: https://www.mariecurie.org.uk/ |
| National Institute for Health and Care Excellence. End of life care for adults. Quality standard QS13. 2017. https://www.nice.org.uk/guidance/qs13 |
| NHS website: https://www.nhs.uk/conditions/end-of-life-care/ |
This article aims to add to the existing body of literature and build on the aforementioned initiatives. The author is a clinical psychologist with a range of experience in palliative care both in the UK and abroad. This article highlights a number of considerations that may obstruct or disrupt a constructive and supportive conversation around death and dying for staff working in palliative and end-of-life care. It refers to a number of generic contexts, both personal and professional, which may influence and impact upon the conversation about dying with patients and offers a suggested frame of reference for professionals to consider during these interactions. Although it is applicable to all healthcare staff, it is aimed particularly at nurses as the core group of professionals who are most often expected to manage the related psychological fall-out of a terminal-illness diagnosis and end-of-life experience. It is hoped that, in becoming more aware of the presence of these influences, staff may, more readily, begin to work towards more helpful conversations.
It is important to note that, for the purposes of this article, the terminal illnesses referred to include those diagnoses where the patient is cognisant of the fact that they are in the final stages of life and the time frame allows some processing of that fact. This might include diagnoses such as pulmonary disease (including chronic obstructive pulmonary disease, pulmonary fibrosis, pulmonary embolism, etc), cancer, cardiomyopathy and heart failure. All involve managing an increasingly complicated set of symptoms as the patient's condition deteriorates, and the patient will be conscious of these. As such, each aspect of these problems requires a complex set of ‘emotional management skills’ in the more profound context of how each patient will experience their dying—quite apart from individual differences. It excludes those diagnoses where cognitive function is compromised because reflection, memory and processing are a prerequisite for the conversation. Patients with such diagnoses require a different level of support and intervention.
Defining a good death
All palliative care organisations promote the idea of a ‘good death’ and the topic itself has a developing research base in its own right. The term has generated much debate around terminology as well as definition. Meier et al (2016) carried out an extensive literature review and concluded that what defines a good death can only be determined by the patient themselves as opposed to professionals and carers. Additionally, they concluded that even the term ‘good death’ would be more appropriately replaced with the term ‘successful death’ in the context of a life continuum including ‘successful ageing’.
Different organisations have their own definitions of a good death. The Institute of Medicine, in the USA, offered a generic definition where a good death is: defined as:
‘One that is free from avoidable distress and suffering, for patients, family, and caregivers; in general accord with the patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards.’
Alternatively, Marie Curie offered a more inclusive and detailed definition on its website. The organisation identified a number of factors that must be part of ensuring a good death, including (Weston, 2015):
Meier et al (2016) devised a list of further specifics based on their review, including:
There has been extensive comment on this topic, but the above definitions are helpful in contextualising not only the experience of dying but also offer direction to services, as well as highlighting specific considerations for professionals around talking to patients about death and dying.
Talking about dying
Since a person's relationship to death is as individual as their relationship to life, no single conversation about dying will be the same. The complexity of individual experience is further influenced by differing diagnoses, individual illness trajectories and the identification and management of patient-specific needs at this time. At the point of diagnosis, it is the treatment, management and/or containment of disease and symptoms that take priority, and the core experience of facing death is considered of secondary importance. For the patients themselves, however, this may not be the case. Indeed, Steinhauser et al (2000) argued that psychosocial and spiritual issues are as important as physiological concerns in a palliative care setting. In recent years, organisations such as Dying Matters have introduced several initiatives to support terminally ill patients and professionals working in palliative and end-of-life care. Set up in 2009 by the National Council for Palliative Care, the aim of Dying Matters is to promote general public awareness around death, dying and bereavement and to encourage transparency about the topic between healthcare staff and their patients. Dying Matters stated that:
‘Our lack of openness has affected the quality and range of support and care services available to patients and families. It has also affected our ability to die where or how we would wish.’
Dying Matters rightly asserts that only by being more direct about the issue can we create a change in the way our society views death and will accept that death is to be prepared for in the same way as life (Dying Matters, 2018). It is important to offer staff a framework in order to implement these ideals in clinical practice—these could take the form of evidence-based guidelines on which to base their conversations with people at the end of life.
Although research in the area of talking about death and dying is growing, our current resources are somewhat limited in the areas they cover. In regard to a terminal illness diagnosis, research tends to focus on the practicalities of the situation, such as:
This information is undoubtedly invaluable but gives limited direct support to those who work closely with terminally ill patients during their last months and days, namely nurses. The information gathered is often based on the experiences of nurses in training, rather than experienced staff, so may not be as applicable to more qualified staff, given their increasing levels of subsequent experience. Furthermore, the research often fails to make a distinction between the practical and emotional care of patients who are dying and tends to refer to care largely as medical management, with brief reference to the direct conversation around death and dying. Of course, the content of difficult conversations is part and parcel of nursing care and, as such, no single training pro forma needs to be offered, nor would it suit such situations. However, what may be helpful, in what McCormick and Conley (1995) call the ‘living-dying phase,’ may be an awareness around identifying those factors that may obstruct and/or disrupt the nurse's approach to the conversation and, subsequently, how they may go on to shape and influence how smoothly such conversations flow.
Wenrich et al (2001) identified 12 domains related to physician competence in end-of-life care. These were:
Sub-components included:
Although such research is invaluable in highlighting areas of competence, there is, in reality, little consistency in time and opportunity for teaching and/or implementing ideas and competencies across palliative and end-of-life services—all adding to the changing priorities that health professionals working in such services might face (Costello, 2001; Kayser-Jones, 2002; Wenzel et al, 2011).
It should be noted that any reference to ‘the conversation’ does not refer to a single, one-off interaction of limited time but to any number of interactions where discussing and reflecting on death and dying is raised, according to the individual patient's needs.
Contexts: personal and professional
Since death and dying is a shared human experience, the issues facing patients around their mortality are therefore equally applicable to staff. However, in order to successfully manage conversations around death and dying, staff must allow the conversation to be led by the patient's needs and not their own thoughts. Consequently, it is important to reflect on personal views, thoughts and fears on the subject and identify the boundary between the nurse's personal views and the patient's issues. This is essential in order to identify and assess the relevant strengths and weaknesses of the required skill set needed to work with the patient.
As a clinical psychologist with experience of working in a palliative setting both directly and jointly with nurses as well as in the form of level 2 supervision (National Institute for Health and Care Excellence (NICE), 2004), the author has recognised a number of commonalities that nurses may face as a challenge to successfully managing the conversation about dying. The following questions are intended to be used as a personal checklist when approaching such conversations in the context of existing and wider training, knowledge and experience; and as a personal reminder in settings where such conversations with patients are often dismissed due to time pressure and generic ward-based activities. This is not to suggest that without them there is no conversation, rather they are meant as a mental checklist and shared guideline to ensure that the quality and extent of the conversation is as meaningful as possible for the patient, allowing for additional (and perhaps previously unspoken) considerations when developing a care-management plan for each patient.
The questions that we may pose to ourselves regarding a patient conversation about death and dying may include:
In order to achieve confidence in implementation, it is important to understand the reasons why these might be included in guidelines to support nursing teams.
Is the conversation for my benefit or the patient's?
Nurses preparing to engage in a productive conversation with a dying patient may miss the fact that the patient does not need to talk about their imminent death (allowing for the distinction between needing and wanting to talk). Both Dean (2002) and Strang et al (2014) concluded that it should not be assumed that all patients want to talk to nurses about the terminal nature of their illness or that patients expect them to have all the answers to their dilemmas. Similarly, emotional content may not be assumed because not all patients respond with a uni-dimensional distress response. Therefore, it is of primary importance to establish this early on through either an informal assessment or a formal measure that captures coping and acceptance aspects as well as basic mental health concerns and risks (see section ‘Challenges within the wider context’).
What are my own experiences of death and thoughts about dying?
The impact of our own experiences of death and dying may well influence the direction of the conversation as well as the extent to which we feel able to explore subsequent issues raised. Our own fears may well prevent us from allowing our patients to either raise, share or discuss their fears, especially if they become aware that staff themselves appear reticent on the topic. Nurses cannot assume that, because terminally ill patients are dying, they lose their sense of self and/or other perception; indeed, for many patients, this may well become more acute. Brent et al (1991) carried out an extensive study with 420 nursing graduates, exploring attitudes toward caring for dying patients. They found that aversiveness to dying patients was most affected by professional experience and attractiveness to dying patients by personal experience. Educational experience made a small but significant contribution to both.
This research is important in also reminding us that our reflections, particularly on death, cannot be limited to our personal experience within our social settings but must necessarily be extended to all of our interactions at home as well as work: they are in fact all personal, it is the setting that has changed.
What am I assuming relates to the experience of dying—what thoughts belong to whom?
Expanding on the above question, this question asks the nurse to reflect upon how much of our intended conversation with patients coincides with our own thoughts and fears about death rather than what the patient has revealed. This may help nurses to ensure that, instead of talking about death and dying based on their own experiences, the conversation is led by the patient's own experiences. Of course, our own reflections can be helpful, as tentative descriptions, when contextualising discussions at times when patients are unable to find the words. But it is important to begin with understanding the patient's experiences by listening to what they choose to share. The patient is the expert on their own death.
Are we all speaking the same language?
We know that a period of high emotional distress can result in any number of shared misunderstandings around what was said and what was intended. For terminally ill patients, this confusion may not only add to distress, but impact upon treatment and illness progression. McCormick and Conley (1995) and Steinhauser et al (2000) reported a reduction in both physical and psychological problems in palliative care when staff employed good communication skills. These included avoiding medical jargon and attending to both verbal and non-verbal cues, being sensitive to patients' perspectives and actively reducing barriers to mutual understanding. This makes clear the importance of staff making a distinction between what they say to the patient and what is understood by the patient at the end of each discussion.
Should I mention faith?
Numerous aspects of what has been defined as ‘a good death’ have involved raising the relevance of religious faith (Steinhauser et al, 2000; Davies et al, 2002; Zheng et al, 2015; Meier et al, 2016). Exploring the relevance of faith at this point is helpful not only as an ego-strengthening resource but also in enabling the patient to voice any ‘faith crisis’ that may have occurred as a reactive response. This may be done either through direct conversation with staff or by introducing hospital or pre-existing community religious services. Although this option may already be available, this is about being creative in the use of the role of faith as well as faith-based organisations. For example, if the patient wishes, a hospital chaplain could visit to talk and pray with the patient, or a local mosque, synagogue or temple may have volunteers who will visit. One may consider extending some of this information to related cultural practices to ensure there is no disconnectedness between the two aspects of the patient's life (Zheng et al, 2015; Zheng et al, 2016). For example, considering and acknowledging existing cultural norms and views around death and dying, burials and views on the afterlife as experienced by the patient or their families and irrespective of professional views on the subject.
Can I identify what skills I have for this conversation and what am I missing?
In thinking about this it is important to make the distinction between the overall role of caring for the dying and the specific job of having a conversation about death and dying. Given the duality of the role many nurses face in their professional lives—of both health carer and ‘on-call’ therapist—it is important to be aware of this challenge. The skills here are core counselling skills, such as being curious, ensuring relevant content and focus, listening and reflecting, as well as being able to cope with feelings of discomfort and offering containment, ie creating a safe space between patient and professional that allows the patient to be able to express unpleasant and uncomfortable emotions to the professional, who is able to hold the emotion without apparent or obvious distress. The task involves connecting a number of different skills depending upon patient need rather than a fixed protocol around pre-set questions and responses, even though there may be a generic framework (Beck, 1997). This requires flexible thinking about the whole experience of death and a creative application of ideas in the shared contexts of death, dying, life, living and the patient's journey (Zheng et al, 2016; Hagelin et al, 2016).
Time frames—whose time am I working on?
The natural pressures that nurses face on a daily basis cannot be ignored and the increasing stress upon existing services can easily result in an unspoken need to speed up all interventions. This is especially the case when time is spent talking to the patient—an activity that is not always given its rightful priority outside of a therapeutic setting. This is a greater challenge in a setting where patients may well be increasingly mindful of the passing of time and want to savour each moment, given it may be their last. This is best addressed by staff being mindful of their own presentation and their present and active participation in the conversation, as well as sensitivity with regard to the actual content. This may be achieved by employing mindfulness techniques either personally or with the patient before the conversation begins.
All of the above questions do not exist in isolation of each other, but collectively they are intended to support staff to support patients at a time when they may be at their most vulnerable.
Challenges within the wider context
Beyond the personal and professional contexts of the conversation about death and dying, there are a number of significant, wider considerations that may pose a challenge to staff, given their practical implications for management. Each of these challenges requires greater attention than can be given in this article, but, in brief, their core significance is presented below.
Dual diagnosis
Ellison (2008) carried out an extensive literature review on mental health in palliative care and concluded that no exact figures are available owing to difficulties in assessment and lack of recognition within services and so is under-treated. She noted that while there is a significant number of studies focusing on reactive depression as a result largely of cancer, numerous other terminal illness are excluded, as is pre-existing mental illness (Ellison, 2008).
Any existing mental health problems may easily be considered secondary to the severity of a terminal illness. In accepting that position we may miss any causative increased emotional vulnerability as well as the impact that any unresolved difficulties may have on the experience of dying. Alternatively, pursuit of any pre-existing psychological therapy during the ‘living-dying’ phase may be superseded by the severity of ill health or deemed to be irrelevant at the end-of-life stages. Clearly, this is about patient priority, capacity and need and any interventions should be altered accordingly.
A recent report by Atkin et al (2017) for Marie Curie (2017) found that 93% of specialist palliative care doctors reported difficulty in managing patient anxiety, with 71% saying that they had difficulties in assessing anxiety. Furthermore, 71% of physicians reported difficulty in accessing specialist psychological support services in spite of NICE guidance recommending cancer patients with significant psychological distress should be offered referral to specialist support and that physicians should have close working relationships with mental health teams (NICE, 2004).
NICE recommends a four-level model of professional psychological assessment and intervention in cancer patients (2004). The guidance states that professional psychological support at levels 1 and 2 (mild and moderate mental illness or distress) should, in the first instance, be provided by health and social care professionals directly responsible for the patient. The nurse can assess and monitor the patient and consider the least disruptive but most effective input to ease the patient's experience and reduce the impact of any mental health diagnosis during this time. Nurses may also use this input to access further support regarding assessment of risk as well utilising support from a named patient therapist in order to ensure patients are prompted to employ any ego-strengthening guidance and/or cognitive strategies to further support them.
More severe psychological distress (levels 3 and 4) should be managed by a variety of psychological specialists, including counsellors, mental health nurses, clinical and health psychologists, psychotherapists or psychiatrists (NICE, 2004).
Patients with specific psychological needs may require psychological interventions such as cognitive behaviour therapy, social skills training, work with phobias and confidence issues, and medication to ease psychological distress, including anxiety and depression (NICE, 2017).
Assisted suicide
Assisted suicide is a complex legal, medical, psychiatric and psychosocial process. Publicity and changes in law in other European countries has meant that many patients in the UK now see this as an option in managing their illness and death. It is in the context of terminal illness that this issue is most pertinent. Many patients raise the subject, but professionals often feel the issue is too complicated to manage. However, avoiding the subject does not give the patient the opportunity to express their needs. This can often, understandably, leave staff confused about opening up the conversation.
Currently, under English law, assisted suicide is illegal under the terms of the Suicide Act (1961) and anyone supporting such an action may face up to 14 years' imprisonment. The NHS website (2017) sets out the current position on this subject.
Between 1 April 2009 and 31 January 2019, there have been 148 cases referred to the Crown Prosecution Service (CPS) by the police that have been recorded as assisted suicide (CPS, 2018). Of these 148 cases, 100 were not proceeded with by the CPS and 28 cases were withdrawn by the police. There are currently three ongoing cases. Three cases of encouraging or assisting suicide have been successfully prosecuted. One case of assisted suicide was charged and acquitted after trial in May 2015 and seven cases were referred onwards for prosecution for homicide or other serious crime (CPS, 2018).
In light of these legalities, it remains important to be aware that listening to the patient's views is not illegal and understanding the reasoning behind the request offers a great insight into understanding the patient's distress. For terminally ill patients, the legalities are, understandably, secondary to their personal physical and emotional needs.
This area is further complicated by the ‘do not attempt resuscitation’ (DNAR) option, which, in the patient's mind at the height of distress, may merge with the idea of assisted suicide. Although DNAR does not mean ‘do not treat’, it is a patient-set directive that allows them to make a decision while they have the autonomy to do so. It is interesting to note that many clinicians feel that this term should be replaced with ‘allow natural death’ (AND) in order to clearly distinguish it from assisted suicide, where the patient is more actively involved in their death (Venneman et al, 2008).
For staff, the challenge is to strike the incredibly delicate balance between managing the patient's symptoms according to the stage of their illness, working within the legality of the situation, and supporting the patient to feel heard and understood without dismissing the level of distress they feel, or being thought to collude. Clearly, staff undertaking these difficult conversations should record details of conversations in the patient notes and request support and supervision from more experienced or senior members of the team. Relevant safeguarding guidelines should also be followed since, in the case of both dual diagnosis and an intention towards assisted suicide, the impact may require external mental health team support.
Advance care planning
All of the above issues, both personal and professional, require a wider framework to support all those involved in end-of-life care and to facilitate future conversations (Emanuel, 2000; NHS website, 2018).
Advance care planning is a means of enabling staff to manage some of these complex issues. In essence, it involves a direct conversation between the dying person, their families and health professionals about their future care needs and wishes.
In addition to local care and treatment, advance care planning may also include direction and support related to any advance statements and decisions around requests for, as well as refusal of, treatment, drawing up a lasting power of attorney document and making a will. All of this is done in line with the Mental Capacity Act 2005. The advance care planning gold-standard framework advises five stages to support the patient, their families and staff: ‘think, talk, record, discuss and share’ (Gold Standard Framework Centre, 2019).
Caring for staff
In recent years, mental health policy has reflected the fact that supporting staff is a key aspect of delivering effective health care interventions (NICE, 2004; HM Government and DH, 2011; Panday, 2016; Mental Health Taskforce, 2016). This centres on the relationship between the personal and professional factors that impact upon professional decision-making and further relates to safeguarding staff as well as patients and upholding best and safe practice.
In mental health services, vicarious trauma among trauma-team therapists is well known and staff are encouraged not only to vary their caseload with a range of intensities of patient distress but also to ensure that their work is in and of itself not solely in a discipline that can have a significant impact on their own ego-strength and mental health. The same may be applied to palliative and end-of-life care settings. While case management is a decision for nurse managers, local staff support in the form of reflective practice can be offered as a core aspect of such services. Although reflective practice is commonly noted in policy as an important aspect of such services, it is rarely found to be available, adding to the burden of responsibility that staff working in these settings must manage. It is surely only in containing staff distress that we may successfully contain the distress of patients, ultimately creating a safe space for both to work effectively.
Conclusion
It is understood that processing the experience of death and dying can only be managed and is not something to be solved. Given the potency of the experience, it is important that the process is not disrupted by the nurse's own personal and professional insecurities about the topic. In supporting staff to support patients in this stage of their life's journey, health professionals have an opportunity to create a safe space, allowing our patients to share both the unsayable and the unthinkable in an atmosphere of transparency, openness and acceptance. In doing so we keep patients connected to their lives and the living, thereby, giving them the freedom to write their own ending.