A good death: key conceptual elements to end of life care

A “good death”

Achieving a “good death for all” is a prominent social and political priority across the western world (Ellershaw et al, 2010); however despite this prominence the concepts of such a death remain unclear, ill-defined, and thus it is difficult to determine the primary endpoint of EOLC (Hirai et al, 2006). The core quality of a “good death” varies among cultures according to Iranmanesh et al (2011), who state that whilst a “good death” is a multidimensional individual experience based on personal and sociocultural domains of life that incorporate the person's past, present and future, there remains no universally agreed definition.

Watts (2012) states for example that the idea of a “good death” is ambiguous, complex, eclectic, and fluid in nature, attributes which are compounded further by a minimal theoretical or empirical exploration of the relationship between end-of-life care pathways and conceptions of a “good death”. This makes it a difficult notion for most healthcare disciplines, let alone one as young and relatively new to higher education as paramedicine, to fully comprehend their role within.

A “good death”, although unique to the individual, has been described by multiple research authors as having the control to make decisions at the end of one's life, dying in physical and psychological comfort in one's preferred choice of environment, having good relationships with family and medical professionals, not becoming a burden, and being respected as an individual. Furthermore, attributes such as spiritual comfort, open and frank communication, preparing one's affairs, retaining pride in one's personal appearance, as well as fulfilling both individual and family religious wishes are seen as key to experiencing a “good death” (Mitsunori et al, 2008; Goldsteen, 2006).

It has been argued recently by authors such as Brady (2012a) that paramedics might view death as a failure, especially given that the advancing education and technology that underpins practice increases public and professional expectations to protect and preserve life. However, paramedics also have a key role and responsibility to actively avoid invasive treatment therapy, and work directly with individuals and families in times of crisis to provide what they consider to be the best possible death for those with life limiting, palliative, and end of life conditions—a responsibility shrouded with confusion, professional unease, and a societal silence that is only recently beginning to lift.

Saunders (1989) reminds us that ‘how people die remains in the memory of those who live on,’ highlighting that paramedics have a responsibility not only to the patient, but also their family, friends, and carers, and a view which impacts directly on individuals’ epistemological distance with death.

Humanity's epistemological distance with death

Epistemology is a highly complex philosophical paradigm with multiple existential, cognitive, scientific, and social strands, which this article does not have the scope to begin to cover. Derived from the two Greek words “episteme”, meaning knowledge, and “logos”, meaning science, epistemology can be defined as the science of knowledge, and is very often employed to signify the certitude of human knowledge (Toohey, 1952), e.g. the certainty of death. Concerning itself with the limits of human knowledge, how and why humanity knows what it does, and to what effect this alters human ontology, epistemology is of key interest to philosophers, social scientists, educationalists, researchers, and existentialists alike (Charles, 2013; Gringeri et al, 2013).

Derived from Descartes’ epistemological and ontological arguments for the existence of a deity, humanity's “epistemological distance” with death can be described as thus:

This epistemological distance with death is decreased or indeed removed in EOLC patients, as the unavoidable inevitability is close enough that it does alter and control their everyday lives. Fundamentally this is facing one's own mortality, and a situation with which comes a plethora of conceptual problems, such as death anxiety, spiritual pain, grief, and existential crisis—concepts this article will continue to introduce.

Existential crisis

The term “existential” is a wide description of a human characteristic, and concerns thoughts about life and death, right and wrong, guilt, meaning and loneliness; such thoughts are ways to understand the world, the meaning of being human, and how one should live (Westman et al, 2006). Boston et al (2011) explain that terminally ill patients are frequently confronted with severe debilitating existential symptoms, which are often neglected due to confusion or lack of definition, conceptual understanding, as well as poor training—arguably traits seen within paramedic EOLC education. Symptoms include: loss of self worth, meaningless, loss of identity, a sense of hopelessness, death anxiety, grief, and isolation (Schuman-Oliver et al, 2008), and can be experienced by all, at all stages of life not solely at the end.

Treatment for existential crises, a diagnosis which covers many anxiety, depressive, and mental health disorders, is still in its infancy and little is known about the efficacy of different approaches; however, some include: cognitive behavioural therapy, complimentary medicines, group support, individual therapy and psycho-education (LeMay and Wilson, 2008). Whilst such treatments are for educational and practical reasons currently out of a paramedic's scope of practice, an understanding and appreciation of the concept of existential crisis in EOLC patients and families can arguably contribute to higher quality holistic care.

Furthermore, the power and ownership of one's own existence, brought around by the application of concepts such as empowerment, person-centred care, and patient expertise—which this article continues to explore—is continually relevant to paramedic practice, as existential concerns such as loss of control and autonomy can lead to various forms of physical, psychological and social distress (Hammond et al, 2012). Distress which all paramedics are likely to have to deal with in the community as EOLC patients rethink their lives and contributions to others in their often limited time left, time which can be fraught with grief, spiritual pain, and death anxiety.

Death anxiety

Death anxiety can be experienced at any stage of life, most often after one experiences an “existential slap” (Coyle, 2004), such as when parents die, the witnessing of traumatic events, upon retirement, during poor health, and receiving a terminal diagnosis. Described by Yalom (2008) as a mortal wound and the costly price humanity pays for the gift of self awareness, death anxiety refers to the apprehension of one's own demise, the loss of the self and life purpose, nonexistence, and fundamentally man's awareness of his own death (Vanisri and Chengti, 2012), and is a form of existential crisis. With heavy overtones of epistemology, Sherman et al (2010) explain that death anxiety results directly from humans having a conscious awareness of their own mortality. None more so is this seen than in terminally ill, life threatening, and EOLC patients and families, who are unavoidably forced to face their own mortality.

Death anxiety can vary according to individual life experiences, personality, emotional intelligence, one's ability to express themselves, previous anxiety or psychiatric disorders, and social factors such as culture, religion, class, occupation, gender, age, and attitudes towards death. Symptoms include low self esteem, increasing or decreasing one's workload, depression, anxiety, the intense dislike of change, burnout, stress, restlessness, trembling, palpitations, nausea, sweats, sleeplessness, existential crisis, nightmares, and acute fears of the dark (Hill, 2002; Yalom, 2008; Engel, 2013); the latter few this author himself experienced after the death of his father. Treatments for death anxiety mirror that of existential crises, and include group and individual complementary, writing, music and art therapies, coupled with counselling, open communication in which the patient expresses their feelings, advanced planning, and also pharmacological aid such as benzodiazepines. Whilst such treatments are not currently open to paramedic provision, community signposting, referral and understanding are well within a paramedic's scope of practice.

Lyke (2013) explains that death anxiety, a ruinous condition borne out of ‘humanity's need to simultaneously search for meaning and defend against the awareness of inevitable death,’ is distinct from the fear of actually being dead. The fear of death of oneself may be distinct from the fear of death of other people, and such concern about one's death versus the death of others may vary across people with different levels of death anxiety. Fundamentally, however, death anxiety can and does affect the dying and those close to them, making it an important aspect of existential palliative care that paramedics need to be aware of; perhaps most importantly so, as an increasing amount of authors argue paramedics are highly susceptible to death anxiety themselves.

Paramedics much like other public, private, and military emergency and unscheduled health professionals, are increasingly susceptible to death anxiety, as they experience everyday civilian life situational cues, coupled also with having to confront the knowledge of death's inevitability in workplace situations that constantly render salient human fragility (Lehto and Stein, 2009; Routledge and Juhl, 2010; Brady, 2013). Recent research has shown that emergency nurses, a post somewhat comparable to that of paramedics, score very highly on fear of death and death avoidance subscales, potentially resulting in personal illness, family breakdown, poor-quality patient care, depression, burnout, and stress (Cook, 2011).

Knowledge of “death anxiety” is important for paramedics, not only because they may treat and refer patients in all stages of life suffering from what can be a truly debilitating condition, but because they themselves are increasingly susceptible to suffering also, providing a level of empathy between themselves and EOLC patients, who may also be experiencing preparatory grief and spiritual pain.

Spiritual pain

The World Health Organization's (2011) definition of EOLC is a biopsychosocial one, which includes the need to attend to patients’ and families' spiritual needs—needs which differ from culture to culture and ones which paramedics are likely to come into contact with given the increasingly multicultural society in which we live.

Defining spirituality itself is difficult as it can mean different things to different people, and is even denied by some. This aspect of humanity, which is experienced and interpreted differently by every individual (DH et al 2009), forms an essential element in creating a peaceful death, and acknowledgement of such is closely associated with increased patient and family satisfaction (Kruse et al, 2007). Spirituality and religiosity, which can define who an individual is and the morals by which they live their life, and they way they view their afterlife, may be a new aspect of a patient's being, becoming important only when a diagnosis or palliative decision has been made, when facing one's mortality, and in times of existential crisis, commonly referred to as the “existential slap” (Coyle, 2004). Spiritual pain in such cases can be highly challenging to overcome given the acuity to which a person has turned to religion and the lack of religious understanding. Furthermore, the “existential slap” can force the patient and family members to actively question and lose their faith, and thus a support structure, at the very time they most need one.

Such spiritual pain, distress and crisis can manifest itself in physical and non physical ways, with sufferers of spiritual struggles tending to have poorer physical and psychological experiences (Mako et al, 2006). Symptoms, some of which are similar to existential crises, include physical pain, fatigue, nausea, anxiety, depression, and an overall inability to cope (Delgado-Guay et al, 2011), and can actively be assisted by paramedics within the community.

It is unsurprising that a concept which for many is integral to their everyday life should be equally if not more important to them in dying and death. Caring for someones spirituality can at the very basic level consist of acknowledging a patient's spirituality and religiosity, empowering and opening a dialogue with individuals and families to work within their definition of spirituality at the end of life. Milligan (2011) also notes such treatments for spiritual distress as signposting to other disciplines, such as psychosocial colleagues, pastors and religious officials. Furthermore, harmonising a dying person's environment by removing all unnecessary medical paraphernalia, coupled with introducing advanced planning notes to ensure last spiritual rights and wishes can be achieved, all of which paramedics within the community can facilitate for the patient, and importantly, also the family.

Disconcertingly, however, multiple authors highlight a lack of education, appreciation, and understanding surrounding spiritually and culturally responsive paramedicine (Archer and Spenser, 2012), with an array of research suggesting that misunderstandings or even ignorance of patients’ and families' spiritual beliefs can have harmful consequences for patient practitioner relationships; something which is increasingly likely to occur within paramedicine given the lack of emphasis on spirituality and religiosity in current academic curriculum (Hartley, 2012). This author argues that it is a paramedic's responsibility to be aware of such conceptual issues facing individuals and families at the end of life, given the frequency with which they deal with such cases. In doing so care can be delivered in a way that is spiritually sensitive, and those patients and families seen to be in crisis can be assisted, to ensure that the best life and death possible can be achieved, and one that aids in reducing the impact of deleterious and often crippling results, such as preparatory and anticipatory grief.

Grief

Grief is a common human response to a perceived loss, and is defined by Mallinson (2013) as a set of physical, emotional, psychological, and spiritual symptoms that result from experiencing a loss in one's life, and should be differentiated from depression. Grief is most commonly associated with the death of a loved one, and an experience thought to be most felt by the bereaved; however, grief can result from the loss of a way in life, such as after retirement, the loss of an ability or skill, such as walking, and can affect the dying equally as much if not more than the bereaved.

Whilst the bereaved usually lose one person at a time, EOLC patients will experience the anticipated and preparatory loss of all their relationships, way of lives, purpose and meaning. Kumbler-Ross (2009), who introduced the five stages of grief: denial, anger, bargaining, depression, and acceptance, argues that such feelings are felt just as vehemently by the dying patient, and should be openly discussed and expressed to improve EOLC experiences. Mystakidou et al (2008) describes preparatory grief as a process one must undergo to prepare for the final separation from the world, causing the dying to refect on the past, to relive life moments, mourn for missed opportunities, and grieve for the loss of anticipated experiences, such as weddings, grandchildren, and graduations. Symptoms of such grief include emotional responses such as crying, sadness, anger, guilt and loneliness; physical responses such as fatigue, chest tightness, stomach discomfort, and shortness of breath; and psychological responses such as disorientation, forgetfulness, inability to concentrate, and insomnia (Carpenito-Moyet, 2009).

Anticipatory or preparatory grief can be experienced by family members, friends, and carers, as well as the dying patient themselves, highlighting the need to have a broad holistic and family-centred approach to EOLC. Like so much in EOLC, treatment for anticipatory or preparatory grief involves the use of empathetic, sympathetic, open and frank communication, such that reassures the affected that their feelings are perfectly normal.

Allowing the affected to recall, refect and share their experiences, feelings, memories, and often fears is hugely beneficial, and listening and writing exercises should be encouraged. Professional help is usually always available in the form of counselling and group therapy; however, pharmacological interventions should be the exception and not the rule, with the protracted use of benzodiazepines for example intensifying denial and thereby delaying or preventing effective and cognitive processing of the loss (Periyakoil and Hellenbeck, 2002). The anticipatory grief and treatment of carers should also not be underestimated, and health professions should promote that self-care, and finding a balance between caring demands and the need for rest and socialising, coupled with taking the opportunity to say goodbye and voice the unspoken and unexpressed, is perfectly normal, and indeed healthy (Simon, 2008).

Paramedics should have a working knowledge of grief, and comprehend that it can take effect before, during, and after death itself, and is a perfectly normal human response to life change. They should be aware that they are in a prime position to complement the work of community palliative care specialists, district nurses, general practitioners, and expert patients themselves. Through a comprehension of the conceptual elements of EOLC such as the provision of a “good death”, epistemology, existentialism, spirituality, anxiety and grief, paramedics are better able to work with EOLC patients and families to improve the overall death experience—improvements that are achieved by working in an empowering, family and person centred way, that appreciates the experience of all involved.

Empowerment

Empowerment is central to concepts such as family and person-centred palliative care. Empowerment appears heavily within the health and social care policies of the last ten years and is portrayed as representing a desire to move away from the outdated and traditional paternalistic medical models of care, to ones that recognise a patient-professional relationship, and patients as autonomous decision makers (Piper, 2010). Aujoulat et al (2007) expand upon this idea and portray empowerment as the emphasis on the rights and abilities of individuals and communities, passing back control of their health and allowing people to play a central role in designing, monitoring and evaluating the quality and effectiveness of their services, something which given the limited time and control EOLC patients have, is hugely important to improving the death experience for all.

Empowerment from a paramedic perspective is a method by which the confines of traditional evidence bases can be expanded to include user experience and patient expertise (Brady, 2012b), giving a voice to the once “worked on” patient as opposed to the now “worked with”. Anderson and Funnel (2010) argue that empowerment facilitates self-directed behaviour change by helping patients choose personally meaningful goals, such as what patients would like to happen when they die, and in what environment it will happen, often ensuring easier decision making for paramedics when called in times of crisis, and increased patient and family satisfaction. Empowerment should not be tokenistic and should be viewed as a continuous and ongoing relationship, with patients and families at the centre of all decisions.

Person and family centred care

Person and family-centred care is a concept that has been increasingly acknowledged and encouraged in both academia and palliative practice in recent years, expanding upon the concept of empowerment and moving away from a view of “passive patient” to one of “active participant”. Person-centred care (PCC) aims to create a view of patients much more as consumers and users of health care services, and inevitably this often includes family, friends and carers. Whilst some academics argue that there is no uniform definition of person-centred care (Bertakis and Azari, 2011), others such as Price (2006) define it as strong interest in the patient's and family's own experience of health, illness, injury or need, inferring that practitioners should work with the person and family's own definition of the situation, as well as that presented through medical or other diagnosis, giving rise to appreciation of palliative religion, spirituality, anxiety, and grief.

Elaborating upon earlier definitions, Pope (2012) describes six dimensions of PCC as to:

Pope's (2012) dimensions of PCC share key tenants of high-quality EOLC, and allow patients and families to plan in advance, share fears and concerns, dictate best practice, and fundamentally to die well (Rolland, 2012). Having the ability to make such person- and family-centred decisions is often considered more important to patients than waiting times, medication, accommodation and also privacy (de Boer et al, 2013); however, caution must also be paid, as in some situations it is neither feasible nor safe to fulfil all families' and individual requests.

PCC, however, is far more than merely complying with requests, it is a concept of comprehension, compromise, respect and partnership, which when used in palliative practice boasts such benefits as improved health quality, satisfaction, decision making and dignity (Pope, 2012). Often family and PCC can only be achieved by recognising the

experience and expertise of patients and families as evidence, an approach which is empowering and provides justification for decision making in EOLC.

Using patient experience as evidence

It is feasible to assume that those who call emergency services very often require the skills, education and expertise of out-of-hospital practitioners and not solely a method of transportation, such as that in EOLC. It is equally feasible, however, to assume that those requiring such skills and education themselves posses a level of expertise, an expertise that paramedics should take into consideration. Patients and families have individual experiences of illness, treatment, recovery and acceptance of terminal diagnosis, which are vital in informing practitioners' clinical decisions and providing care that is both congruent with predetermined wishes and the patient's best interests, as stipulated in the Mental Capacity Act 2005 (c.9).

Arguably the archetypal use of patient experience is that of the expert patient, a consideration again integral to EOLC patients and those caring for them. Expert patients are those who can manage their own illnesses and conditions by developing knowledge relevant to maintaining their health and countering illness, resulting in them having greater control over decisions affecting their lives and ultimately their deaths (Shaw and Baker, 2004). There is evidence to suggest, however, that nurses are frequently uncomfortable with expert patients and the idea of being challenged by them (Wilson et al, 2006), a view perhaps not dissimilar to paramedics. Paramedics use patient expertise and experiences of previous and similar medical problems every day as part of medical history taking, clinical decision-making, and intervention justification, perhaps unwittingly. This recognition of patient expertise should not be confided to a biomedical model of care but expanded to include and improve social and psychological care also, especially with those suffering from life-limiting, palliative, and end-of-life conditions.

The benefits paramedics will see by appreciating the experience of EOLC patients will become evident during conversation and decision making. Patients and families are often less tense and reticent than practitioners assume them to be when talking about EOLC, as often palliative nurses, general practitioners, and clergy have already had in-depth discussions with them. Patient and family experience can help to guide decisions in an ethical, empowering and often legal manner, to provide the best life for a patient, and the most peaceful death possible.

Conclusions

Death still remains a taboo subject in the 21^st century, avoided in discussion through fear of causing upset and distress. However, without frank open and honest discussions with EOLC patients and families about death, or how one will die, much irrevocable upset and distress will be caused as people inevitably lose the chance to die well. Introducing palliative care is not a sign that health professionals and patients have given up, however, merely a sign that the goals of care have changed from what was aggressive curative treatment, to now aggressive comfort care. Society is taught to be happy and celebrate a new birth, but not to be happy in the fact that someone has died well; we as health professionals, often as much if not more, have control over such care.

This author has personal experience of palliative care, as his father, an accomplished and well-respected psychiatric nurse of over 25 years was unfortunate enough to suffer from aggressive terminal lung cancer at the age of 52. However, he was fortunate enough to have what he considers a good death, a pain free death, a dignified death, and a family-centred death. During this time this author alone broke the news of terminal diagnosis to four out of five of his previously unaware siblings individually. It is this personal experience, coupled with his clinical and academic interest in paramedicine and EOLC, that has led him to publish such an article. However, he believes that he is not alone in such experiences and many paramedics across the world have a wealth of similar experience that they can bring to their everyday work, to improve patient-centred EOLC within the community.

This article has highlighted that paramedics have an integral and frequent role in community EOLC; however, they are perhaps not currently best versed in dealing with such situations. Practical and clinical skills are indeed important, but limited in their efficacy without a comprehension and appreciation of more conceptual aspects of practice, such as epistemology, existentialism, death anxiety, spiritual pain, grief, as well as empowering person- and family-centred EOLC. Unless paramedics embrace their role in EOLC and openly and honestly discuss this in practice, and incorporate it into academic curriculums, patients and families might not experience the best end of life and death that is achievable for the majority.

‘In the 20th century our deaf ear to death mirrored the Victorian blind eye to sex’ (Berridge, 2001)—this must change.