Research

The Role of Emotions in Hospice Care

Dr. Joaquín T. Limonero and Dr. Saul Ebema

Emotions are inherent to human condition and color all the activities we do every single day. They are the most important engine in our lives and facilitate the adaptation to environmental demands: they influence the cognitive superior processes, for example, perception, thinking, decision-making, language, beliefs, motivation, learning, memory and our behavior and intentions.

People coping with advanced illness or life-threatening diseases, such as cancer, experience many symptoms, emotions, and feelings during their illness trajectory that can contribute to their suffering. These emotions may result from a variety of different factors and the intensity usually varies considerably from day-to-day, hour to hour and patient to patient.

Using a metaphor to illustrate this point, the patient may experience a kind of emotional salad, where different emotions appear as different types of lettuce leaf (most negative than positive) with different degree of intensity (depending on leaf size) as a result of the coping process and the proximity of impending death.

The most common negative emotions are loneliness, anxiety, anger, fear, guilt, hopelessness, sadness, but the patient can also experience positive emotions (e.g., happiness, hope, peace, security, love, meaning or gratitude).

These emotions are experienced by the patient but also by the different members of their family, especially by the caregiver; they are dynamic and contribute to the well-being or emotional distress of the patient/caregiver.

Many of these emotional reactions of the patient/caregiver during the illness trajectory are “normal” (e.g., anxiety, sadness, and preoccupation) and are related to the adaptation process and with the significance of the impending loss. In severe cases, these emotions can be characterized by symptoms of anxiety or depressive disorders.

Both the patient’s normal emotional reactions and their emotional disorders can increase the emotional distress of the family/caregiver. According to the integrative model of the suffering stated by Krikorian and Limonero, suffering occurs when the dynamic balance between perceived threats and regulatory processes (which include coping resources and strategies) is lost.

In this emotional context, the relief of suffering or emotional distress and the improvement of well-being are the two priority goals of the Hospice Care.

A first step to meet the patient’s needs or help patients and caregivers to deal with negative emotions is to detect them. It means that there is a need to have adequate tools to assess emotional distress or suffering and the specific emotional reactions that occur in this complex situation.

To make a good assessment of emotional reactions of both patients and caregivers, it is necessary not only to ask them about their emotional reactions, worries or what is the most important for them but also to observe their reactions through their open behavior.

In this sense, it is important to analyze the external signs of emotional distress. These signs are truly relevant, particularly in those caregivers who do not express openly their feelings or when communication is difficult.

Emotional assessment is essential to effective hospice care because unmet patient’s emotions (or caregiver emotions) and suffering may be under diagnosed, minimized, or underestimated. Without understanding these emotional aspects, we cannot help patient or caregiver effectively.

Therefore, from a psycho-social and psycho-spiritual research point of view and from effective hospice care perspective, it is advisable to design specific emotional therapies identifying the most important elements or the underlying mechanisms, the number of sessions, the duration of the session, the type of patient, the clinical setting–home, nursing home, hospice care unit, inpatient- and as well as the follow-up of patients in comparison with other psychological support therapies. In this case, well designed randomized studies will be necessary. These specific tasks will surely provide a more comprehensive and coherent evidence based care in Hospice.

REFERENCES

1. Limonero JT. Motivació i emoció [Motivation and emotion] [In Spanish]. Barcelona, Spain: UOC; 2003.

2. Krikorian A, Limonero JT, Maté J. Suffering and distress at the end-of-life. Psychooncology. 2012; 21(8): 799-808. doi: 10.1002/ pon.2087

3. Grassi L, Spiegel D, Riba M. Advancing psychosocial care in cancer patients. F1000Research. 2017; 6: 2083. doi: 10.12688/ f1000research.11902.1

4. Krikorian A, Limonero JT. An integrated view of suffering in palliative care. J Palliat Care. 2012; 28(1): 41-49.

5. World Health Organization. Palliative care. In Cancer control: knowledge into action. WHO guide for effective programmes. Geneve, Switzerland: World Health Organization; 2007.

6. Limonero JT, Gil-Moncayo F. Importance of psychological research in palliative care: Barriers in its development. Palliat Med Hosp Care Open J. 2014; 1(1): 1-3. doi: 10.17140/PMHCOJ-1-101

Hospice Chaplaincy is a nonprofit organization committed to promoting excellence in spiritual care at the end of life. We are committed to the belief that people from all backgrounds, cultures and faith traditions should experience the end of life in a way that matches their own values and goals. The task of dying is complicated and often confronts us with lots of emotional and physical suffering. Hospice Chaplaincy is dedicated to providing patient advocacy, support and education services to the public, to create a cultural shift to inform and transform our thinking around the end of life.

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