# Motivation and emotion/Book/2021/Holistic care needs of the imminently dying

* Multimedia presentation (3 min)

## Overview

Caring for the imminently dying is complex. One of the sources of this complexity is the varying emotional experiences associated with death. Some may resist the inevitable and experience death anxiety, lingering over denial, anger, bargaining and depression in the five stages of grief (Stroebe, Schut & Boerner, 2017). Others may simply find peace and neutral acceptance in their situation. These varying emotional experiences make defining a universal care blueprint for the imminently dying challenging. Therefore, this chapter uses evidence-based research to outline elements of a holistic care plan for the imminently dying. However, it will do so in recognition that care plans are not always transferable. With holistic and effective care categorised by individual differences, caregivers must be adept to tailoring their approaches to end-of-life care. The burden of physical care typically falls on professionals, more specifically a palliative care team. This team is made up of allied health professionals ranging from physicians, nurses and carers to pharmacists and physiotherapists. It is the role of this team to ensure that the two primary physical care needs, pain relief and other symptomatic management are effectively addressed (Bischoff, O'Riordan, Marks, Sudore & Pantilat, 2018). Other health and wellbeing professionals such as psychiatrists play a role in managing the psychological care needs. However, a large portion of this variety of care is often assumed by loved ones and non-medical professionals.
While physical care forms a large portion of holistic care needs for the imminently dying, this chapter is primarily concerned with the psychosocial and emotional aspects of death. It integrates theories and current research towards explaining the role that human emotions play in the delivery and receival of end-of-life care. Although this chapter outlines certain avenues of caregiving, in does not contribute to major medical components such as diagnosis and prognosis.
* Case study
* June is a 78-year-old Christian women living in an assisted living community. June was recently diagnosed with advanced stage ovarian cancer. Due to her age, June is not eligible for rigorous chemotherapy and radiation treatment. She has not been given an exact timeframe but is told that she should begin getting her affairs in order. With this prognosis, June’s care community have suggested she move from her independent two-bedroom unit into the 24-hour assisted-living facility.
* Although June is not yet in physical discomfort, eventually she will require pain relief and subsequent symptomatic management from her caregivers. However, June’s psychological care needs are multidimensional and will require closer attention. With a sudden diagnosis and ensuing change in living arrangements, June has instantly and unexpectedly lost her independence. June used to enjoy owning her own home, with the responsibility of maintenance keeping her busy and fulfilled day-to-day. The loss of her routine has brought up a variety of emotions including disbelief and anger at her new situation. It will be the role of the facility-based psychologist to help June find peace in her prognosis and her unfortunate yet necessary lifestyle change. Initially, June’s team will look to help her find her feet, including trialling new interests that help keep her spirits high.
* June will still be able to attend church on Sundays while she is physical capable. However, a time will come when the bus-ride and the short walk into the cathedral will become too physically demanding. It will be at this stage that June will request personal visits from a member of her community-based clergy. Visits from spiritual leaders can have a dramatic impact on a patient’s death experience (LeBaron, Smith, Quinones, Nibecker, Sanders, Timms, Shields, Balboni & Balboni, 2016). These visits will support June and address any spiritual concerns she may have before her death.
* What do you think?
* What emotions are typically associated with death?
* How should June’s team best help her cope with these emotions?
* What support networks should be in place for June?
* Focus questions
* What aspects of care are often overlooked in psychological care needs?
* How is anticipatory grief best managed?
* How is end-of-life care tailored according to individual circumstance?

## What is end-of-life care?

End-of-life care (EoLC) is healthcare provided to individuals coming to the end of their lives. The condition of these individuals can vary greatly. Some may be in the advanced stages of a terminal illness or suffering from significant cognitive deterioration. Others may be healthy, relatively speaking. Care of the imminently dying is generally divided into four areas of care; physical comfort, mental and emotional needs, spiritual issues and practical tasks (National Institute of Aging, 2017). For the purpose of clarity, these four areas will be fitted within either physical or psychological care needs subsections.

## Who delivers end-of-life care?

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### Palliative care team

Given the multiple dimensions involved in palliative care, no one professional can provide holistic caregiving. Therefore, treatment and support for end-of-life patients must be delivered by a multidisciplinary and diverse team. These teams often involve a range of medical professionals, all of which vary in caregiving capabilities and scope of practice. Non-medical professionals for example, pastoral care workers, may also play a role within the team. The precise construction of a palliative care team is dependent of both a patients needs and wishes.

#### Medical practitioners

* General practitioners
* Oncologists – diagnose and treat cancer.
* Neurologists – diagnose and treat nerve diseases.
* Respiratory physicians – diagnose and treat lung diseases.

#### Nurses

Nurses play a vital role in the delivery of end-of-life care. Nurses often spend more time with a dying patient than do the family and friends of that patient. Subsequently, it is often a nurse who directly reduce the distress and burden for those facing death (Schroeder & Lorenz, 2019). It is the responsibility of a nurse to work together with other appropriate palliative care team members to optimise a patients quality of life. They do so by delivering both physical and psychological care, harnessing the ability to anticipate, treat, and prevent a patients suffering. Notably, nurses are also most likely to have day-to-day interactions with a patients friends and family. This often places them in a type of mediator role between, at times, minimally responsive patients and their loved ones.

#### Carers

Carers are most often found in cases where a patient is receiving end-of-life care in the home (Devlin & McIlfatrick, 2009). For many, in-home care is preferable due to the increase in patients comfort and familiarity. However, an in-home setting often requires 24-hours monitoring which subsequently requires an increase in the number of ongoing team members required to fulfill a patient’s needs. Carers commonly work side-by-side with nurses and share many of the responsibilities of delivering physical care. However, it is important to clarify that carers are trained in caregiving but are not medical professionals. Therefore, the role of a carer is to assist in the delivery of care without overstepping professional or ethical boundaries.

#### Physiotherapists

The primary role of a physiotherapist in a palliate care team is to manage distressing and debilitating symptoms. They address the physical and functional dimensions of a patients’ suffering by promoting, preventing and treating physical discomfort (Kumar & Jim, 2010). Correct management of pain levels can improve a patients overall function, thus enhancing a patients quality of life. This is now more important than ever, with the average lifespan and therefore, the probability of life-limiting physical debilitation much higher.

#### Pharmacists

Great progress in medicine over the last 60-years has led to longer and healthier lifespans. As a result, the overwhelming majority of end-of-life patients will experience chronic and life-limiting illness before their death (Hawley, 2017). Therefore, ongoing pharmaceutical treatment is inevitably required in some form, either hospital or community directed. Regardless of delivery direction, it is the role of a pharmacist to work closely with medical practitioners to design and implement an appropriate pharmaceutical treatment plan.

#### Psychiatrists

In recent years, widely accepted guidelines and strategies for managing psychiatric care in end-of-life patients have been under review. The inquest has followed speculations that such standards fail to implement a patient and family centered approach (Galappathie & Khan, 2016). Although different Countries adhere to different guidelines, the inquest did spark revaluation across borders. New formats now largely highlight five priorities for psychiatric care: recognition of anticipated death, communication sensitivity, patient involvement, recognition of family’s needs and personalised care plans (Galappathie & Khan, 2016). This may not have universally altered previous practice, however, it has likely contributed to the increased recognition of acceptable psychological care for dying individuals.

#### Pastoral care workers

Pastoral or spiritual care workers are commonly found in palliative care teams. Not dissimilar to the role of a psychologist, they are professionals trained in assisting end-of-life patients manage the emotions associated with dying. However, pastoral care workers take on the responsibility of mediating between patients and spiritual leaders such as ministers, priests, rabbis and imams (Gijsberts, Liefbroer, Otten & Olsman, 2019). Those close to death often find comfort in religion or spirituality, thus making it an important aspect of holistic end-of-life care.

### Family and loved ones

The family and friends of an end-of-life patient also play an important role in caregiving. Although palliative care teams improve a patients comfort and security, it cannot fully replace the care provided by loved ones. Family and friends may not directly contribute to the delivery of physical or psychological care, although in some cases they do, but they often indirectly improve their loved ones quality of life. The presence and support of loved ones, particularly in a patients final days of life can provide reassurance. This is something that cannot be replicated by a palliative care team.

## Physical care needs

The ability to provide high-quality palliative care largely relies on a palliative care teams’ competence to understand a patients physical care needs. Research that has investigated dying patients hierarchy of needs has revealed that unless physical needs are fulfilled, other care needs a rarely even considered by a patient (Davison, 2010). Physical needs relating to pain management tend to rank highest on patients personal hierarchies. This may involve fear of pain, which is likely as a result of poor previous pain management and can often be equal to actual experience (Davison, 2010). Regardless, of whether a patients needs centre actual or anticipated physical needs, it is clear that caregivers must address this as a priority.

### Pain relief

Pain is extremely common in advanced diseases. With longer lifespans resulting in heightened probability of acquiring a life-limiting illness prior to death, pain management has become increasingly important within palliative care. Effective pain management aims to investigate the underlying sources of pain, as well as reduce discomfort at the end of life. Additionally, holistic pain management must also consider approaches to minimising analgesia-related adverse effects and drug interactions (Koh, Song, Kim, Park, Hee Ko & Woo Han, 2017). This consideration often leads to the input of other symptomatic management.

### Other symptomatic management

The five most common symptoms for persons in palliative care are constipation, breathing difficulties, delirium, fatigue, nausea and vomiting (Hagmann, Cramer, Kestenbaum, Durazo, Downey, Russell, Gerluz, Ma & Roeland, 2018). Experiences of palliative symptoms can be either acute or chronic in nature. Nausea and vomiting are the most prevalent adverse effects experienced by end-of-life patients (Hagmann et al, 2018). This suffering is compounded by the administration of analgesic medications, resulting in an increased frequency or duration of symptoms. Similarly, constipation is adversely impacted by the prolonged use of opioid-based medications, as well as polypharmacy (Hagmann et al, 2018). Therefore, to holistically meet the physical care needs of a palliative care patient, pain management must be achieved with consideration of its impact on other end-of-life symptoms.

## Psychological care needs

Although psychological needs are only typically prioritised by palliative patients when their physical care dimensions are being correctly accommodated, psychological care can be as equally important. Psychological care can be defined in terms of concern with the psychological and emotional well-being of a patient. This can include issues of self-esteem, cognitive insight, reflection of illness and its consequences, communication and social functioning (Hudson, Remedios & Thomas, 2010). The span of such issues and the acknowledgment of individual differences, makes the existence of stringent guidelines for psychological care in end-of-life patients impractical. Some patients may require psychiatric support with coming to terms with their prognosis, as was the case for June (see case study). Others may simply find comfort in their cultural or religious groups, in the absence of professional psychological support. With this in consideration, standards of practice relating independently to all key components are typically used (Murray, McDonald & Atkin, 2014). The practical task component of holistic caregiving largely refers to assisting a dying individuals with their personal affairs. This may concern an individuals will and testament or their advanced care directives. Theoretically, effective caregiving within the dimensions of a patients personalised psychological needs will come together and result in overall better psychological health and well-being.

### Emotions

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#### What are emotions?

It is difficult to definitively define emotions. This is primarily because emotions are multidimensional and serve a number of varying objectives. This assortment of purpose has been outlined in a number of different ways by a number of different researchers and theorists. Johnmarshall Reeve describes emotional purpose in a four-component model (Reeve, 2018). The four dimensions cover cognitive, biological and behavioural elements and motivations of emotions. A solely cognitive view would describe emotions as feeling states, designed to guide our particular feelings. Alternatively, a biological explanation would discuss emotions in terms of a biological reaction to stimuli with situational cues. Similarly, behavioural elements focus on the generation of urges and impulse that led to action. Regardless of explanatory preference, what has been made clear over years of emotion research is that the understandings are complementary and delivery a comprehensive definition when understood collectively.

#### Emotional regulation

With the clear functional purpose of emotions established, the obvious next question becomes ‘can we control our emotions?’ Emotional regulation is the human-specific attempt to personally control and influence the emotions we experience. This can involve the specific emotions we experience, when we choose to experience them and how we choose to display that experience (Reeve, 2018). The ability to not only regulate emotions, but also recognise and accurately express them is supportive in death. Psychologist James Gross describes five strategies that an individual can use to regulate their emotions. Situation selection, situation modification, attentional focus and reappraisal are proactive attempts, whereas suppression is reactive in nature (Gross, 2002). Further explanation is giving on each strategy type in Table 1.
| Emotional regulation strategy | Description |
| Situation selection | Involves taking action to control an emotional reaction. This includes basic decision-making, often about a situation or predicted experience. For example, ‘I will not go out because I will feel anxious’. This can act as both an avoidance and open strategy to emotion. |
| Situation modification | Involves being proactive to change the trajectory of a situation. There is no avoidance attempt within this strategy. Instead, it requires circumstance coping and relies on an individual’s ability to organise and orchestrate an emotional event. |
| Attentional focus | Involves an individual’s attempt to shift their attention in order to avoid or redirect an emotional experience. This is primarily a self-administered distraction strategy made possible by the capacity to enact selective attention. |
| Reappraisal | Involves cognitively altering the meaning or personal feelings about a situation in an attempt to modify the subsequent emotional experience. This strategy is often invoked in situations of delayed emotional expression. For example, if someone cuts you off while driving to work, you may feel initially angry, but quickly modify your emotions by reflecting on the possible reasons it may have occurred. |
| Suppression | This is the only regulation strategy used to alter an already existing emotional state. This can involve modifying any and all aspects of an emotional experience (see Figure 2). For example, an individual may take a deep breath in an attempt to control bodily arousal brought on by an emotional reaction. |
Table 1. Five emotional regulation strategies.
Based on these regulation strategies, Gross constructed a theoretical model illustrating the basic trajectory in which an emotional episode occurs. This model addresses the emotional trigger as ‘a significant life event’ and describes the stages throughout the emotional experience in which an individual can choose to enact emotional regulation (see Figure 4).

#### Emotions associated with death

* Loss
* Grief
* Bereavement
* Sadness
* Anger
* Disbelief
* Guilt
* Loneliness

#### Why emotions are important

Most people would agree that feelings of sadness, embarrassment or guilt are not often feelings to be desired. This conclusion begs the question of ‘what purpose do emotions serve?’ A popular theoretical approach to this question describes dual benefits in coping and social functions (Keltner and Gross, 1999). Although there is a common recognition of these two elements, different schools of thought approach and explain these elements in extremely different ways.

#### An evolutionary perspective

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##### Coping function

Emotions are primitive and evolved as a survival instinct. In order to survive, animals had to learn to constantly adapt to changes in both their physical and social environments (Keltner et al, 1999). These emotionally produced behaviours may have included sourcing food, avoiding injury and caregiving. Understood today, emotions help an individual prioritise certain actions over others. Effective prioritisation leads to an increased capacity to adapt to those physical and social environmental demands. Automated adaption helps an individual cope with both major and day-to-day challenges, placing emotions at the control centre of our actions.

##### Social function

Emotions also serve a social function. Similar to coping functionality, an evolutionary perspective can establish a basic blueprint of how emotions were first used by animals for social benefit. For centuries, emotions have been used to navigate through social situations, including for the purpose of essential social problem-solving and the creation and maintenance of interpersonal relationships. Emotions are thought to influence social behaviour in four interconnected ways. Emotions:
* help individuals communicate feelings to one another
* influence how others reciprocate interaction
* facilitate a general willingness to interact
* establish, maintain and terminate social relationships (Reeve, 2018).
Given how important social connection is to our psychological health and wellbeing, it is no surprise the extent to which healthy emotional expression is emphasised.

## The impacts of COVID-19

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### Delivery of these needs in a pandemic

Despite the clear disparity between Countries[grammar?] experience with the coronavirus pandemic, healthcare has been pushed beyond it limits globally. The nature of coronavirus has seen widespread restrictions on the delivery of caregiving. Again, these restrictions are different across countries, but have included surgery delays, visiting restrictions or bands and most importantly, removal of certain caregiving components. This has included patients dying in isolation and without the support and love from their families[factual?]. It may be too soon to reach a conclusion on the long-term effects of these provisional changes, with many Countries still in the midst of their worst days. However, short-term effects suggest that healthcare patients are suffering from the overall loss of caregiving components they so often rely on.

### Compassion fatigue

There are known emotional impacts of medical personnel’s involvement in prolonged or mass patient suffering (Alharbi, Jackson & Usher, 2020). With mass casualties occurring from coronavirus globally, questions have elevated on whether compassion fatigue has begun to play a role in caregiving throughout the pandemic. In addition to an increased exposure to patient suffering and death, there has been an introduction of responsibility relating to resource management and rationing (Alharbi, et al, 2020). In many cases, these medical professional have been working with limited resources, with supplies such as ventilators and PPE, and hospital beds in high demand. These factors have likely influenced both caregiving and receiving globally.

## Conclusion

Overall, the holistic care needs of the imminently dying are both physical and psychological in nature. From a basic hierarchical perspective, physical needs lead, with physical discomfort or pain ensuring that a patient generally disregard their other needs. While physical care forms a large portion of dying patients care needs, this chapter was primarily concerned with the psychosocial and emotional aspects of death. The psychological needs of a patient are largely based on individual differences, personal preferences and experience with death. Emotions play a significant role in determining these elements of care. James Gross’s work was used to illustrate the importance of emotions and emotional regulation strategies in the end stages of life. A more comprehensive understanding of emotions associated with death, including strategies on how best to approach these emotions would benefit both caregiver and care receiver.