Every Second Counts

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive disease that affects patients with a loss of speech and mobility. The aim of this study was to describe patients’ experiences of living with ALS in the end-of-life situations. A manifest content analysis was chosen for analysis narratives from four biographies by women who had ALS. The categories Suffering, Meaningfulness, and Experiences of a Limited life were identified as describing patients’ understanding of living with ALS. Nurses need to be trained in communication skills to maintain human dignity for patients who lost their speech regarding an intellect in shape. There is a need for information among family members about severe diseases, such as ALS, to improve high quality of care and well-being for all involved. Home health care has to invite and facilitate patients’ and relatives’ participation regarding the end-of-care processes to improve a sense of coherence to handle everyday life situation in the future.

Keywords

amyotrophic lateral sclerosis (ALS)communication skills end-of-life care qualitative content analysis sense of coherence (SOC)

Introduction

Amyotrophic lateral sclerosis (ALS) is a progressive disease that affects patients regarding loss of speech and mobility.^1,2 Few studies have examined patients’ coping in the end-of-life situation with ALS, though it is important to understand patient’s perspective to uncover the complex situation caused by the disease and its consequences.

Background

The neurodegenerative disease ALS occurs worldwide and causes extensive impairments of the motor functions as paralysis in the upper and lower limbs and bulbar muscles. The disease could be described as a laterality of pathology and changes in lower motor neuron conditions. Common symptoms are muscle weakness, paralysis, spasms, and difficulty in speaking.^1-3 The disease is incurable with a limited survival time of approximately 3 to 4 years with variations of up to 10 years or more. In the end-of-life situations, it is significant to provide best possible care according to patient’s wishes, and therefore communication is central in nursing care.^1,4 Communication is the foundation for high-quality care, and it is significant for users and providers to develop trust in each other especially in palliative care.^5,6 Communication and information about health care creates trusting relationships between the caregiver, patient, and relatives.⁷ Patients control, reassurance, and trust are key factors for high-quality care in the end-of-life situations to create meaningful relationships with health care professionals.⁴ The response of the patient is a significant factor in performing care.^5,7,8

Information about palliative care could lead to conflict if nursing staff try to smooth things over. Patient’s lack of information about sex life, interests, jobs, and other everyday activities.^7,9,10 Understanding a disease’s effect on everyday practices is significant in palliative care.¹¹ Feelings such as hope and despair are individually experienced at the end of life, where some finish life with resistance whereas others accept the situation.¹⁰ Fear for death is a common feeling; therefore, people like to have their loved ones near when the time comes.^7,12 Social networks are relevant for emotional, physical, and/or financial support to live in the present.^5,13 However, patients express difficulties in handling uncertainty and acceptance about dying and death.⁹ Despair regarding economic aspects is described when patients could not work or could not perform dressing, shower, and take meals by themselves.^6,9,14 Patients described themselves as a burden to their family due to caring activities.^9,10

A sense of coherence (SOC)¹⁵ including comprehensibility, meaningfulness, and manageability could be a useful concept to achieve relationship built on understandable information for patients and relatives.¹⁶ Meaningfulness in SOC includes motivation and commitment in preparation for a changed life situation, and therefore it is essential that relationship is based on communication skills to support patients’ well-being. Manageability includes aspects such as explaining, informing, and supporting patients and their next of kin to feel empowered for shared decision-making regarding ill health at the end of life.¹⁶ Manageability could strengthen the family to manage a specific and complex life situation by creating hope and promoting quality of life based on individual needs.¹⁷ However, there is a lack of studies about patients’ experiences about ALS; therefore, the aim of this study was to describe patients’ experiences of living with ALS in the end-of-life situations.

Method

Design

Qualitative approach is a trustful way to understand patients’ perspectives by using their voice, views, and thoughts about different phenomena, for example, living with ALS in the end-of-life situations. Key concepts of qualitative research are trustworthiness, transparency, verification, reflexivity, and “informant-driven” as well as insightful and artful interpretations.¹⁸ Moreover, trustworthiness of the results was ensured through a scientific systematic analysis using a well-documented methodology of a manifested qualitative content analysis.^19,20

Sample and Data Collection

The study sample included a total of four biographies (public communication) written by women who had ALS. Inclusion criteria were autobiographies written in Swedish about the disease ALS. Exclusion criteria were autobiographies without experiences of living with the disease. The sample was selected through Google search tool by keyword “biography” followed by “living with ALS” and “end of life” (see Table 1). Narratives, as biographies, are one way to understand patients’ experiences about ALS at the end of life. This knowledge can develop palliative care and ensure that patients and relatives receive high quality of care.²¹

Table 1.

Overview of Data Collection With Regard to Keyword and Autobiography.

Google	No. of hits	Reviewed autobiography	Included autobiography
Keyword
Autobiography + ALS + experiences	115,000	6	4
Total	115,000	6	4

Note. ALS = amyotrophic lateral sclerosis

Ethical Considerations

One ethical dilemma in public communication is that participants are unaware that material could be used in a study. No ethical approval was required according to public communication though this publication is for research and educational perspective. Respect for the individuals was a main concern during the study. Ethical guidelines for human and social research have been considered throughout the study.^22,23

Data Analysis

The narratives were analyzed using manifest qualitative content analysis¹⁹ in a step-by-step procedure (see Table 2). Written words from the narratives were used for the analysis. Texts were read to acquire a first impression of the content. The manifest analysis addressed questions about patients’ experiences of living with ALS in the end-of-life situations. The analysis was performed in the following steps: (1) Transcripts were read and re-read to obtain an understanding of, and familiarity with, the text; (2) meaning units (words, sentences or paragraphs) corresponding to the content areas were selected for (a) feeling of fear and (b) feeling of anger; (3) each meaning unit was condensed into a description of its content and labeled with 54 codes; (4) categories were identified and clustered into categories such as Suffering, Meaningfulness, and Experiences of a Limited life.

Table 2.

Example of Description of Data Analysis.

Meaning unit	Condensed content	Coding	Subcategory	Category
At the same time, I feel a great happiness and joy everywhere I am experiencing right now. Several times each day filled my house with laughter. Does that sound strange?	At the same time, I feel a great happiness and joy everywhere I am experiencing right now	Satisfaction	Strength	Meaningfulness

The emerging findings are illustrated through quotes from the four biographies.

Results

One category Experiences of a Limited life and two subcategories Suffering and Meaningfulness were identified as describing patients’ understanding of living with ALS. The categories are presented in Figure 1.

Experiences of a Limited Life

Experiences of a limited life are described by women as suffering and meaningfulness. In everyday life, women describe a constant battle finding meaningfulness within while suffering from a severe disease. The forthcoming death causes them despair and sorrow that life soon will be over and therefore they express grief and despair knowing that time is running out. Meaningfulness where highlighted as a need to cope with a disease, death are described as finding solace in the family and to be a part of a context. Continuing development of their identity reinforces women’s feeling of well-being in a limited life time. They express meaningfulness as joy by a feeling of strong presence and freedom though they still have their intellect left.

Furthermore, women express a fear of losing all body functions because of the rapid disease progress. They live a limited life and describe a grief of no longer being able to live in communion with their partners, children, and forthcoming grandchildren:

I feel deep sorrow for all I won’t get to experience. I am saddened that I soon will leave my four children. ^24(p7)

The moment of death and how life would end were described as a constant struggle between hope and despair. One woman describes it as a hell to live in a body that had given up. Each day is filled with trials and women describe that they are forced to sacrifice daily activities for the family’s well-being. In everyday life, death becomes more apparent when situations can be experienced for the last time. Their remaining time required bracing to cope with everyday obstacles with activities that they no longer could handle such as dressing which requires strength and help:

Having ALS is not difficult. If you cannot go, you got help. If you cannot feed yourself someone else help you. If you cannot talk by yourself you have to think, but I longing to dance, stroking his hand and trap hilarious comments there forever.^25(p107)

The longer the disease had proceeded, the more suffering and feelings of hopelessness and despair it results in. Women felt that the end of life was near and they wanted peace to die in humane conditions with integrity. One woman described despair on not being able to influence her own life. She applied for euthanasia for getting rid of the horror of the death in ALS, but got denied, which was expressed as,

The finest, softest, most wonderful event that could happen to me would be to die with dignity. Get to sleep quietly one evening. I have said goodbye to all the friends. ^26(p94)

Women argue that the feeling gets stronger to utilize all moments regarding a limited life time where every second counts. They describe the concept of presence as,

It is amazing . . . I really do not want to be without this part of my life! I have a very limited time left here. But it’s only now I feel currently. Death brings me closer to life. ^24(p199)

Suffering

Suffering is described by women as despair, powerlessness, anger, and loss of identity. Knowing that the end of life is forthcoming, women described despair. Symptoms of the disease created fear and uncertainty and they felt that health care reduces their problems though it took long time to establish the diagnosis of ALS. They shifted between hope and despair without knowing facts about the future:

A year ago I was working full-time as a television reporter. Today, I can no longer eat by you, can’t walk or wash myself. . . . How to be a middle-aged woman who always praised the independence and autonomy learn to accept having to be managed like a child. ^24(p7)

Anger and despair are expressed by the question why they suffered and what they did to deserve such illness. One question that women asked is if God punished them for not being good enough. A feeling of uselessness arises when previous activities no longer are possible for them to do, with their body becoming weaker and they needing help from relatives and health care services, which contributes to a feeling of being a burden. The idea about suicide was described through women’s thoughts related to losing body functions that facilitate support from the society, and why a quick death could be a solution:

You know I want to be sedated and death, easiest and fastest for everyone. ^26(p89)

Women stressed that they participate in family activities that were too demanding for them. Moreover, they regret not saying and telling things when it was possible and when communication was an essential part of their life. Living without speech made them feel powerless because of not being able to make themselves understandable in daily activities:

My hearing is adequate and my brain is in good shape. You do not need to: 1 Lean forward and speak extra loud and clear. 2 Say things three times because I really understand you’re messaged. ^27(p199)

Women reported that they cannot control their life as they were able to do before the disease ALS. The body had given up and their integrity had changed due to their need for assistants in daily life because of lack of functions in their muscles. They argue that their former healthy identity should be reflected in their relative’s memory: healthy women with a full-time job with ongoing projects instead of becoming a part of the health care system. Women lacked clear answers and adequate information from the health care services due to effects caused by ALS. Inadequate response from health care professionals makes them feel diminished:

And now I get pats on the cheek or, worst of all, on the head, like a child. So I hate it. That patronizes compassion. So far from compassion and empathy. ^24(p224)

Women felt debt about how the disease affected the family and why responsibility had shifted to their partner who must cope with the chores of everyday life, such as being responsible for the family, work, and caring for a sick wife:

On his shoulders arrives stone by stone. Chores, responsibilities, all I cannot do anymore. ^27(p218)

They look back on their life with sadness and regret over things; they did not take care of the earlier lifestyle, such as eating habits, stress factors, and a lot of work and interests had taken time away from family gatherings:

Make sure you are at home with your family. Enjoy all the best you can with fun and comfortable. And I regret that I was not as good at it before. ^27(p159)

Hospital visits create concern about no return to the home again, which creates fear of being placed in the hospital during the last days of life with staff without knowledge about their needs or wants.

Meaningfulness

Meaningfulness is described by women as strength, joy, and the ability to live in the moment. Women suffering from ALS in the biographies are described as well-educated, and athletes who had have lived a structured life. They are expressed as a group of people with a pride identity with two ways of living with the diseases: either to lie down, be angry, and let the disease take over the everyday life, or to live right here and now the time that is left. Women highlight that they took control of their life situation by choosing to live in the moment.

However, to survive, strength is needed. Strength is a concept that retains identity, social network, presence, and participation. Women described that they had remained intellectually active while their body had given up during the illness. Moreover, they described how they traveled in memory and felt an inner peace that generated power for future ill health. Due to their sick body, they instead focused on using their intellectual side. The disease slowly took over their body, but the new ideas and stimulation to their intellect could not be taken away:

I have already started to move out of my body. I’m moving up in the head instead. There I have my brain and my senses. The care and concern for my body, I leave to others. ^27(p152)

Women balanced their feelings between tragedy and comedy; laughs were used together with the relatives, which disarmed the tragedy of the disease. The concept of joy was described by the women to be near their loved ones, which generated togetherness and strength to face death so that they could live until the very end. However, women described that a fatal disease is difficult to cope with, and why it is significant to feel pleasure and joy in the daily activities. Furthermore, joy was described as meeting with friends. This strengthens their identity and was highlighted as meaningful and natural part of their life:

I am not my illness, but the illness am I. ^25(p139)

Women highlight that relatives were important in the caring processes as they provided comfort and closeness and were able to understand their situation. However, they also highlighted the fact that relatives continue to live their own life even when a partner loses his wife. They argued that it is significant to have a functional social network that provides strength and empowers in the dying processes for all family members:

A man and children, parents, siblings, nieces, aunts, cousins, friends, neighbors, acquaintances and strangers. But if it was just me. If it really was just me, then I on the other hand has been dead a long time ago. ^27(p108)

Women reflect everyday life with a stronger presence than before. There is no longer anything that distracts them, and they stay more focused on each situation. Things with less importance before the disease are now seen from another perspective. Women express thoughts of meaningfulness even when they suffered from illness that leads to death:

I have also learned that the journey into the interior is hugely exciting to explore and to get to know oneself is the meaning of life. ^25(p108)

Discussion

The aim of the study was achieved by describing patients’ experiences of ALS in the end-of-life situations. The results show that people who suffer from a severe illness choose to live their life in the moment during the end of life. The reason behind this is to create meaningfulness together with their loved ones. Daily activities such as shower and dressing were impossible to handle, which could question a person’s identity.⁶ The current study described the importance of strength as ALS could create feelings of anxiety, physical loss, unfairness, guilt, shame, and existential loneliness.²⁸ The meaning of life strengthened women’s willingness to live in the moment without focusing on material things. Patients balance anxiety over life and death by using the concept meaningfulness. Therfore, nurse’s support throughout the care process is significant to handle existential questions.²⁸ Women in the current study described it as freedom to think without limitation, a significant part to hold on to during illness, as identity associates with social settings rather than with a person’s identity.^9,10

Women suffered from the loss of the ability to perform their previous profession. Living with ALS became a day-to-day challenge of responding to the disease progression with no periods of normalization, and “ongoing” situated had to be adopted.²⁹ Lost function is a fact, as ALS has a slow progression. Research³⁰ shows that it is important to accept and live in the present focusing on those functions that are still working in everyday life. But the disease could change the integrity and autonomy through passivity that leads to frustration, negative thoughts, isolation, and control issues. Women’s ability to speak was limited, and nurses had to detect patients’ wishes without speech by using a holistic approach. Therefore, health care services had to support and ensure that patients’ remaining resources were used. For example, the patients need intellectual stimulation to maintain their personal integrity and well-being. When communication problems occur, it is important to enlist the help of relatives, providing correct information directly to people involved to maintain respect and dignity.¹⁶ Furthermore, family members could have limited understanding about ALS, and why collaboration between health professionals is important. This is especially important when providing high quality of care for the whole family to prepare for the transition from hospital to home health care and eventually the end-of-life care.³¹

The result showed that women lack communication, information, and clear answers from the health care providers, which created frustration and despair due to a limited life time. However, nurses’ primary duties are to provide information, give advice and support based on a holistic approach, and encourage families to be involved in, for example, the end-of-life care.³² Research³³ shows different correlations between health professionals and patients’ estimation of well-being. Nurses’ estimation of patients’ well-being correlated better than the physicians’. This highlights the importance of working in teams where different professional roles are combined and integrated to improve a holistic view to support the caring processes. Therefore, nurses play a significant role in the clinical management of ALS to coordinate, facilitate, and support decision-making in the end-of-life situations.³⁴

This study shows meaningfulness of having a social network that makes women confident about the forthcoming future with possibilities to face death together with relatives. Comfort in a social network creates a possibility to accept limitation in movement and communication activities. Moreover, social network has a significant role to play in improving emotional, physical, and financial well-being at the end of life.^5,13 Manageability is essential for the patients to be involved and have the opportunity to influence decision-making processes regarding the disease and caring activities.¹⁷ To achieve participation in the caring processes, available and adequate information is the tool that provides patients with comprehensibility, meaningfulness, and manageability in the end-of-life situations. People with a limited life time have to handle guilt toward their partner and the family regarding increasing responsibility for everyday life activities marked by the disease. Therefore, a nurse’s role is significant to support them.³⁴

Overall suffering can be seen as part of women’s lives; however, this could be balanced by feelings of meaningfulness. Lack of speaking skills was hard to handle for the women in the current study regarding their 100% intellectual capacity. They could no longer participate in the same way in social events and their integrity was injured due to the lack of speaking skills. Therefore, it is important for nurses to take responsibility in daily work to perform direct communication with patients with ALS to minimize women feeling powerless and to be a burden to relatives as well as the society.^9,10,29,34

Women in the current study reflected about the lack of time at the end of life and pointed out the importance of being home with their loved ones, and not staying in hospital. Use of telemedicine and mobile video technologies save travel cost and hospital care, while the patient could stay at home.³⁵

The concepts of SOC^15,16 as comprehensibility, meaningfulness, and manageability are significant for well-being during illnesses such as ALS. Therefore, nursing staff had a professional role to play in supporting patients in end-of-life situations, which require structured, clear directions and priorities.^16,36

Conclusion

The study contributes to an awareness of patients’ experiences about end-of-life situations and the need for support from relatives and health professionals. To improve family care in the future, it is important to develop people’s knowledge about ALS through information to enhance the quality of health care. The current study demonstrates the importance of high quality of care in the end-of-life situations regarding communication to maintain human dignity for patients who lost their speech regarding an intellect in shape. Health care professionals, especially nurses, have an important role to play in supporting families in the end-of-life situations to handle suffering and improve meaningfulness by increasing a SOC for well-being during the illness ALS.

Practice Implications

Health care organizations have to develop knowledge regarding ALS to provide high-quality care at the end of life based on communication and relationships. Health care professionals, such as nurses, have to communicate directly with people in an empathic and respectful way about the severe ill health.

Home health care has to invite and facilitate relatives’ participation in the limited end-of-care processes to improve meaningfulness by understanding the changed everyday life situation. Comprehensibility, meaningfulness, and manageability are key factors to build trustful relationships between patients, relatives, and nursing staff.

Furthermore, nurses need to improve their communication skills because of the patient’s loss of speech to develop a sense of coherent way of work. Nurses benefit from education about communication, ALS, and SOC to improve the end-of-life situations in the best possible way.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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