‘Action is needed now on the crisis facing the health and social care sector’
Patients with end-stage kidney disease on haemodialysis face many challenges. This article discusses how their experience can reflect the five stages of grief
Patients with end-stage kidney disease on hospital-based haemodialysis therapy may experience many losses and lifestyle disruptions, resulting in emotional distress. This article explores the experiences of 10 individuals through interviews conducted one year apart. Interviews and qualitative analysis identified five themes around expectation, emotional distress, craving normality, anger and frustration, and integration. Their experiences mirror grief and clinicians must offer a model of supportive care to address this.
Citation: Moran A (2021) The experiences of grief in patients with end-stage kidney disease. Nursing Times [online]; 118: 2.
Author: Aoife Moran is clinical placement coordinator, nurse practice development unit, St James’s Hospital, Dublin, Republic of Ireland.
Chronic kidney disease (CKD) is a major global public health threat with a rising prevalence (Stavropoulou et al, 2020; Oh et al, 2019). When CKD progresses to end-stage kidney disease, the kidneys are permanently damaged and the individual involved needs renal replacement therapy in the form of kidney transplant, haemodialysis, peritoneal dialysis or conservative management.
A kidney transplant is the most beneficial and cost-effective type of renal replacement therapy (Abecassis et al, 2008). However, over 4,000 patients on the kidney transplant list in European countries have been receiving dialysis while waiting for a transplant for two to four years, and over 3,400 have waited for longer than five years (Stewart, 2021).
A proportion of patients on dialysis therapy are unsuitable for transplant due to age, underlying comorbid conditions and the strict criteria that must be met. In addition, some patients opt for conservative management of their disease, which means the healthcare team continues care based on quality of life and symptom control (Johnston and Noble, 2012).
Patients with end-stage kidney disease on hospital-based haemodialysis therapy may experience many losses and lifestyle disruptions, resulting in emotional distress (Kim et al, 2020). For instance, they:
Patients often have other comorbidities, including hypertension, diabetes mellitus and cardiovascular disease (Ajaimy and Melamed, 2020), and experience multiple symptoms, such as pain, fatigue, muscle cramps, insomnia, anxiety, decreased appetite, decreased interest in sex and pruritus (Joshwa et al, 2020; Danquah et al, 2010).
The distressing symptoms and the restrictive regimen of hospital-based aemodialysis prevents patients from doing everyday activities, such as working, socialising and travelling; in addition, depression is common (Ghaffari et al, 2019; Christian, 2017; Ma and Li, 2016; Tsai et al, 2012). There is growing recognition that the life-limiting complications associated with end-stage kidney disease and haemodialysis may force individuals to confront their own mortality, leading to emotional distress (Moran, 2018; Johnston and Noble, 2012).
This study was set up to provide an in-depth description of the experiences of people undergoing hospital-based haemodialysis in a large general teaching hospital in the Republic of Ireland. The study did not include patients in outpatient dialysis units or those on home haemodialysis or peritoneal dialysis.
Purposive sampling was used, enabling the researcher to select participants most likely to increase understanding in this area of study. Patients were enrolled after giving them information about the study and assuring them that privacy and confidentiality would be maintained; full written consent was obtained and pseudonyms were assigned to ensure anonymity. The sample of 16 participants consisted of seven women and nine men who were aged ≥18 years, spoke English and were on hospital-based haemodialysis. They were also either:
Each participant was interviewed twice, one year apart. Interviews were face-to-face and audio recorded, transcribed verbatim and analysed using a qualitative interpretive approach. A list of categories was created and similar/shared categories were developed into themes .
From the data five themes were identified (Fig 1). These are illustrated in more detail below, using responses from 10 of the participants (Table 1). Participants’ experiences of living on haemodialysis therapy was not a straightforward process. Instead, they moved between these experiences in a cyclic way, while they tried to come to terms with the complexities of living on haemodialysis therapy (Fig 1).
Most participants hoped to receive a kidney transplant and return to a normal life. It was clear during interviews that they all had understood the ‘average’ wait time for a transplant to mean the ‘actual’ wait time; they incorrectly believed their transplant would occur within a specific length of time, which related to how they coped with their situation.
Sinead had been on haemodialysis for two years at the first interview and was on the transplant wait list. She expected to receive her transplant soon:
“The doctor said he would prepare me for a transplant as fast as possible… I don’t really mind dialysis because I know it’s going to be short term… I dealt with it [haemodialysis therapy] pretty quickly because I just feel I won’t be on dialysis for too long.”
At the first interview, Bashir, had been on haemodialysis for eight months and was in the process of being assessed to go on the wait list for a kidney transplant. His account showed how the expectation of receiving a transplant allowed him to remain hopeful while on haemodialysis:
“The transplant team are doing my assessment at the moment… I should be getting on the waiting list, and should hopefully hear from the transplant unit within the next month or so… I’m absolutely delighted… there is hope, there’s light at the end of the tunnel.”
Without a definite endpoint to the wait for a kidney transplant, the participants began to realise that haemodialysis was not the temporary measure they had initially expected. This was accompanied by distressing feelings of uncertainty, sadness, disappointment, depression and despair.
At the follow-up interview with Jada, she had been on haemodialysis therapy for three years and to the transplant unit twice for an assessment. On both occasions, she was too overweight to meet the strict criteria to get onto the transplant wait list:
“I’ve been to the transplant unit twice… the medical team say I’m overweight… I’m really trying so hard but it’s impossible to get the weight down… the longer the waiting goes on, the worse I feel about it… At the beginning, I didn’t realise what was going on… but after being on dialysis for three years, I feel I’m going to be stuck here and that’s it.”
Alan had been on haemodialysis therapy for two years and six months at his follow-up interview. Although he was on the transplant list, there was a sense of sadness and depression about his experience of waiting:
“I get depressed, and I feel the transplant is never going to happen, and I think there’s no hope for me getting a kidney transplant because there are so many people on the waiting list at the moment… Is my day ever going to come?”
The participants described their hope of receiving a kidney transplant and returning to the life they had before haemodialysis. The restrictions imposed on their lives by the treatment stopped them doing many of the everyday activities that, in the past, they had taken for granted.
In her follow-up interview, Patricia had been on haemodialysis for four years. She had previously received a kidney transplant that failed. She said her life was completely consumed by the repetitive regimen of haemodialysis therapy and she desperately wanted to return to a normal life:
“I’m always constantly aware of dialysis… I would love to go on holiday, but I can’t because dialysis is always there… I was at a wedding last week and I wanted to relax and have a few drinks, but in the back of my head I know it will overload me with fluid… I know I have to follow these rules, but it gets in the way of work, it gets in the way of a normal routine.”
In the follow-up interview with Advik, he had been on haemodialysis therapy for two years and was on the transplant wait list. For him, receiving a kidney transplant was the only way he could return to the life he previously enjoyed:
“I thought that I would have got the transplant by now… Every Tuesday, Thursday, and Sunday for the past two years, I’ve just been planning to go to dialysis… I’m watching everything I eat and drink… After getting the transplant, I think I’d get my life back… I could go out and have a drink… I could eat whatever I wanted… I’d go back to a normal life again.”
Participants described their anger and frustration about the time they spent waiting before, during, and after haemodialysis (waiting for transport). They seemed to direct this anger towards nursing staff; for instance, Jonathon had been on haemodialysis therapy for one year and four months at his follow-up interview. Due to comorbid conditions, he was not medically fit for kidney transplant. He clearly felt frustration and anger when he attended for therapy:
“I spent an hour and 20 minutes sitting on a chair in the corridor [of the haemodialysis unit]… I did speak to the nurse manager about it, because I was getting fed up of it… I’m supposed to be here at half past 3, and I got on the dialysis machine at 5pm… it’s just frustrating… I said to the nurse manager ‘if the dialysis time is 5 o’clock, well tell me it’s 5 o’clock… Why have me sitting on a corridor looking like a fool!”
In the first interview with Elaine – who was also not medically fit for kidney transplant – she had been on haemodialysis therapy for one year and six months. She had a central venous catheter (CVC) to gain access to her bloodstream during haemodialysis but frequently developed blockages and needed thrombolytic medication; this increased the time she had to stay on the haemodialysis unit, as well as her frustration and anger:
“The dialysis line (CVC) doesn’t work… it is so annoying… I have to wait for the doctor to come and put something in to clear the line… and then I have to wait another hour to let it work… By the time I go home, I am completely exhausted… I sent a letter of complaint to the hospital management at one stage because it is really frustrating, and I am angry.”
Some participants described their acceptance of the new reality of life on haemodialysis. Valerie was on the waiting list for a kidney transplant, thought she would receive one soon and had stopped working to ensure she was constantly available. By the follow-up interview, she had been on haemodialysis therapy for three years and one month and had returned to work for financial reasons; however, she had been able to integrate haemodialysis into her life:
“When I first got on the transplant list, I thought that any day I would be called for a transplant… But as time has gone on, I’ve gradually got back into work because I need the money… I’ve had to get on with my life, and do as many normal things as I can… I plan ahead now, and I couldn’t have done that the last time I spoke to you.”
Henry had been on therapy for two years and three months at his follow-up interview and was also on the transplant wait list. Before he started haemodialysis, he worked in the construction industry but it had been too strenuous for him so he took steps to change his employment to accommodate his haemodialysis therapy:
“Even if I get a transplant, I might not be able to work in construction… I am familiar with computers, and I decided to do some exams and try and get a job at that… I did a course for eight months on computer networks, so now I want to do some more training and exams… the more certificates I have, the better.”
Several participants signified the importance of social support in helping them to do everyday activities and retain a sense of normality, as expressed by Jada:
“I’ve a big family and they all support me. They keep me going. My boyfriend as well…he is great. Many nights I say I’m not going out and he would say ‘come on you better be ready’ and I’d go out”
Being on hospital-based haemodialysis caused many losses in the participants’ lives, resulting in their experiencing a process of grief. In the 1970s, Elisabeth Kübler-Ross changed the traditional way of thinking about death and grief, and was instrumental in bringing about the difficult conversations about these topics (Halinski, 2020). More recently, the process of grief and grieving was revised and updated by Kübler-Ross and Kessler (2005); the five stages of grief as outlined by them is given in Box 1.
Box 1. The five stages of grief
Stage 1: denial Individuals become overwhelmed with the loss and their life makes no sense. Denial provides a way of letting in only as much distress as the individual can manage
Stage 2: depression Individuals experience intense sadness, and their life feels empty and pointless. Depression keeps individuals protected by shutting down the nervous system, allowing them adapt to situations they feel they cannot manage. When experiencing depression, individuals may wonder if this is what life will be like forever
Stage 3: anger Individuals experience anger in response to the unfairness of the loss. Anger is a strength, which gives a short-term structure to the strong emotions associated with the loss. The individual’s experience of anger is usually directed at other people
Stage 4: bargaining Individuals want to go back in time and have their life restored to what it was before the loss. Bargaining can be an important release from the emotional pain that comes with grief, and may ensure the distressing emotions they feel do not control their minds
Stage 5: acceptance Individuals recognise that their new life is the permanent reality and, although they might not like it, they learn to live with it and accept it as the new norm. At this stage, individuals must learn to take on new roles themselves or reassign them to others
Source: Kübler-Ross and Kessler (2005)
It is important to note that individuals do not move through the stages of grief in a straightforward manner. Instead, they may experience one stage, then another, then move back again (Kübler-Ross and Kessler, 2005). These five stages can be used as a framework to discuss the findings of this research.
In this stage, individuals become overwhelmed with their loss and are unable to make sense of their lives. Denial provides a way of letting in only as much distress as the individual can manage (Kübler-Ross and Kessler, 2005).
This reflects the participants’ accounts in the ‘great expectations’ theme. Their understanding that the average wait time for a kidney transplant meant the actual wait time was inaccurate, but allowed them to deny the long-term effects of living with a chronic and progressive illness. The stress and uncertainty caused by having to start haemodialysis can be an overwhelming experience, so it is not surprising that participants may have entered a state of shock and denial. Kübler-Ross and Kessler (2005) suggested that letting all of the feelings associated with loss and grief occur at once would overpower the individual emotionally. As such, denial has an important protective role, which helps individuals to cope.
It may be difficult for nursing staff to understand and address the emotions, reactions and behaviours experienced by patients on haemodialysis. For instance, Thomas-Hawkins et al (2020) found that registered nurse staffing and high workloads on haemodialysis units resulted in many patient care activities being left undone and had a negative impact on patient safety. This may explain why participants were confused about the wait time for a kidney transplant. If the nurses working on the haemodialysis unit in the study hospital were faced with low staffing levels and high workloads, their ability to communicate effectively with their patients may have been hampered and that incorrect interpretation of the wait time for a kidney transplant, may never have been recognised or addressed.
Participants were left in a state of denial about the transplant process and this may have helped them to cope and manage their feelings of uncertainty temporarily. However, as denial fades, the distressing feelings individuals are trying to prevent could begin to surface (Kübler-Ross and Kessler, 2005).
In this stage of grief, individuals experience intense sadness and life feels empty and pointless (Kübler-Ross and Kessler, 2005). Depression keeps individuals protected by shutting down the nervous system, so they can adapt to situations they feel they are unable to manage.
The participants in the study described their inability to engage in normal daily activities, such as working, socialising and travelling, and the emotional distress they experienced in response to the losses and lifestyle disruptions associated with hospital-based haemodialysis. This is reflected in the ‘emotional distress’ theme. The lack of a definite endpoint to haemodialysis created intense feelings of sadness, depression and despair for study participants. They reported that their lives felt empty and pointless as they wondered if they would ever receive a kidney transplant.
Existing research – such as that by Ghaffari et al (2019), Christian (2017) and Ma and Li (2016) – describes depression as the most common mental health disorder in patients with end-stage kidney disease. A meta-analysis of cohort studies by Palmer et al (2013) showed that depression was associated with increased mortality in this patient group.
According to Kübler-Ross and Kessler (2005), anger is a necessary stage of the healing process and a natural reaction to the unfairness of the loss. Anger is a strength, which gives a short-term structure to the strong emotions related to the loss. However, the individual’s experience of anger is usually directed toward other people (Kübler-Ross and Kessler, 2005). This mirrors the anger described by the study participants at having to spend time waiting unnecessarily before, during and after haemodialysis. Their accounts also showed they mainly directed their anger toward the nursing staff on the unit.
Moran et al (2009) described the distressing feelings of impatience, frustration and anger experienced by patients on haemodialysis. These patients were physically attached to the haemodialysis machine; this restricted their ability to engage in pastimes and the time on therapy seemed to pass slowly.
“After being on dialysis for three years, I feel I’m going to be stuck here and that’s it”
In this stage of grief, individuals want to go back in time and have their life restored to what it was before the loss (Kübler-Ross and Kessler, 2005). Individuals mainly focus on the life they experienced in the past, which reflects participants’ descriptions in the theme of ‘wanting to return to a normal life’.
Participants’ accounts showed they desperately wanted to have their life restored to what it was before they started haemodialysis. They stated that the losses and lifestyle disruptions had a negative effect on their lives, and they hoped they would receive a kidney transplant and their lives would return to normal. However, there are many patients on the kidney transplant list in European countries (Stewart, 2021) and wait times may greatly exceed the duration that patients expect; as a result, they may experience distressing emotions, such as uncertainty, anxiety, depression and despair (Moran et al, 2011).
According Kübler-Ross and Kessler’s (2005) model, bargaining may prevent the distressing emotions the individual is feeling from dominating their minds, and can be an important release from the emotional pain and suffering that comes with grief. By focusing on returning to the life they had before haemodialysis, the participants in the study could divert their attention from their emotional distress. In this way, bargaining may have been an important release from the emotional pain and suffering that accompanied their grief.
It is important to note that a proportion of patients on haemodialysis are unsuitable for transplant due to age, underlying comorbid conditions and the strict criteria that must be met. For these individuals, the possibility of receiving a kidney transplant and returning to a normal life is unachievable; they may also experience distressing emotions, which need to be recognised and addressed by healthcare clinicians (Moran et al, 2011).
It seemed that participants’ experiences described in the theme of ‘integration’ corresponded to the stage of acceptance described by Kübler-Ross and Kessler (2005). In this stage of grief, individuals begin to recognise that their new lives are the permanent reality. The accounts of some study participants reflected their ability to accept the new reality of living on haemodialysis therapy; they managed to integrate it into their lives and create a new sense of normality. Their narratives showed the resilience, determination and motivation required to achieve this goal.
Several study participants said the support of people around them and returning to work helped them develop a more positive outlook and accept haemodialysis as an ongoing part of their lives.
A qualitative study by Stavropoulou et al (2020) showed that acceptance of kidney disease was critical for participants in terms of getting on with their lives and maintaining an optimistic perspective of the future. Most participants in Stavropoulou’s study highlighted the positive effects that friends, family and social connections had on their lives. Strength of character and professional help were also mentioned as critical coping strategies.
Similarly, Kim et al (2020) revealed that strength of character or resilience was a significant factor in enabling patients to cope with life on haemodialysis therapy. According to those researchers, the process of building resilience was categorised into three factors:
Our study shows that patients with end-stage kidney disease undergoing haemodialysis therapy in hospital have distressing emotions in response to lifestyle disruptions and the loss of their previous life. The experiences of the participants mirrored Kübler-Ross and Kessler’s (2005) five stages of grief. It is important to note, that individuals do not enter and leave each stage of grief in a straightforward way but can move from one stage to another, and back again (Kübler-Ross and Kessler, 2005). This cyclic feature was also evident from the narratives of the study participants. Their accounts also indicated how the reality of their illness and treatment was not as they anticipated, which raises questions around the assessment, planning and implementation of care for patients on hospital-based haemodialysis therapy.
The World Health Organization’s (2020) factsheet on palliative care indicates that individuals with a non-communicable disease might benefit from palliative care services. However, this term is often associated with impending death, which can make it difficult for health professionals to discuss with those who are chronically ill (Hole et al, 2020; Noble et al, 2007). The term ‘supportive care’ has been created to apply to both restorative and palliative care for individuals with end-stage kidney disease (Hole et al, 2020).
Restorative care involves providing disease-specific treatments to patients, such as haemodialysis therapy, medications, and medical and surgical procedures. Palliative care involves providing treatment to alleviate unpleasant symptoms but is not deemed to be curative. It includes all types of medical, nursing and psychosocial care used to provide pain management, grief therapy and advance care planning for patients (Hole et al, 2020; Chambers et al, 2004).
Based on the findings of this study, it is recommended that health professionals are trained to recognise and address the process of grief experienced by individuals on hospital-based haemodialysis therapy in the supportive care they provide.
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