Advanced care planning among persons living with haemodialysis: a qualitative study

INTRODUCTION End-stage kidney disease (ESKD) is a rapidly increasing global health issue and is the 12th most common cause of death, accounting for 1.1 million deaths globally with an increase in mortality rate of 31.7% in recent years.[1] End-stage kidney disease affects various aspects of life, including physical suffering encompassing physical symptoms and functional limitations. The high symptom burden experienced by people with ESKD has been reported as comparable to that of malignant conditions.[2] Uraemic symptoms such as fatigue, pruritis and dyspnoea, together with significant musculoskeletal pain, headache and access-related pain due to regular needling were consistently reported, and they have a considerable negative impact on the quality of life (QoL).[3,4,5] Dialysis palliates and offers relief from symptoms and occasional life extension, but imposes physical suffering and a financial burden. Numerous individuals undergoing haemodialysis have provided accounts of cardiac arrest and hyperkalaemia, sometimes referred to as 'near-death experiences'.[6,7] The life of individuals with ESKD living on long-term haemodialysis is that of an unpredictable disease trajectory, which can be interrupted abruptly by illness and death. Despite the high mortality rate and unpredictable disease trajectory, little is known regarding the end-of-life care (EOLC) preferences of persons undergoing haemodialysis, especially within the Asian context. End-of-life (EOL) communication starts with the realisation that the overall prognosis is poor, and that all life ends with death. Reluctance to discuss death and dying often stems from fear of ending hope,[8-10] feeling unprepared[11,12,13] and being unsure of who to talk to or how to do so.[8,14] Patients undergoing dialysis typically do not view themselves as terminally ill, and falsely assume they can be kept alive on dialysis.[2,8] Hence, issues relating to death and dying are commonly avoided until late in the illness when decision-making is challenged, exacerbated by the pressure of time constraints, or when decisions of the persons with ESKD are affected by the loss of their mental capacity.[10] Therefore, this study aimed to explore the opinions on EOL discussions and EOLC among persons with ESKD on regular haemodialysis at an urban setting in Malaysia. METHODS Data collection took place at a multi-ethnic-based tertiary hospital and a non-governmental organisation-operated haemodialysis centre in Kuala Lumpur, Malaysia. Participants were recruited based on sex, age, ethnic group, education level, marital status and type of financial support. The inclusion criteria were individuals: (a) who received haemodialysis for a minimum of 3 months; (b) aged 21 years and above; (c) with significant comorbidities such as diabetes mellitus, hypertension and cardiac diseases; and (d) at risk of high mortality.[15] Participants were excluded if they had hearing or visual impairment, had an altered mental status or were emotionally unstable (to avoid trauma as determined by the attending nursing and medical staff). The study was approved by the institutional ethical review board (MEC ID: 201402-0769). Interviews were audiotaped and transcribed verbatim. Participants were guaranteed confidentiality, and pseudonyms were used. The interview began with an open-ended question, "Please share your experience living with haemodialysis." Open-ended and clarifying questions facilitated conversations about different dimensions of their experience, and thereby eliciting their thoughts and feelings about death, dying and EOLC. Additional probing questions were used to gain a deeper understanding of the participant's views. Examples of main questions asked included: "Can you please explain the importance of being prepared for death and planning ahead, as death may occur any time?"; "How important is it for you to discuss EOLC with healthcare professionals (HCP) or family?"; "How important is it to you for your family to be actively involved in decision-making?"; "If you become unconscious, who would you like to make the decisions and why do you say so?"; and "How do religious or spiritual beliefs influence your preferences for medical care?" The questions were pilot tested among participants who were not included in the actual study. The pretesting interviews indicated that the questions were generic enough to be used for individuals living with haemodialysis. A trusted relationship was established with the participants, where the interviewer spent an average of 8–12 weeks at the dialysis centres to engage with participants. A dialysis nurse was the 'point of contact' who introduced the researcher to the potential participants. The verbatim interview records were kept by the main researcher. The coding process was cross-checked by peer researchers. An external advisor who was an expert in qualitative research assessed each stage of the research and provided suggestions as needed. Following analysis, the interview data were provided to participants, and their comments were sought to confirm the data. To confirm transferability, we applied purposive sampling by recruiting participants from different backgrounds to ensure diversity of study participants, and obtained theoretical data saturation. Thematic analysis was applied.[16] Two researchers independently analysed the transcripts. The transcripts were then read thoroughly to understand the pattern of thoughts. Key concepts were identified, coded and rearranged thematically. Quotations under relevant themes and subthemes that represented the participants' opinions on EOL were retrieved. The codes and themes were compared for differences and similarities. Finally, the themes were reviewed with another researcher and debated over a series of meetings until consensus was achieved. The research team consisted of a skilled palliative physician/researcher, a dialysis nurse knowledgeable in treating haemodialysis patients and a nurse researcher with experience in qualitative techniques. When all three principal researchers had reached an agreement an external advisor confirmed the procedure and made suggestions for improvement, which were considered by the team. RESULTS A total of 25 participants successfully completed the interview. The demographic information of the participants is presented in Table 1. The analysis identified four key themes and nine subthemes [see Supplemental Digital Appendix at https://links.lww.com/SGMJ/A104].Table 1: Demographic characteristics of participants (N=25).Theme 1: Life goes on Living for the present The majority of participants did not really think about the future, but revealed that they preferred to focus on living life rather than think of EOL or worry about their uncertain future. Thinking of EOL and death was viewed as causing unnecessary stress that hindered them from moving on with life. Hence, they preferred to leave the future to fate and God. For them, being alive was a bonus, a second chance. They would focus on striving to maintain their QoL, rather than think of death and EOL. Opinions on end-of-life care A plan of care that focused on relieving pain and discomfort with a greater focus on symptom management was preferred. Participants were not in favour of resuscitation in case of cardiac arrest or being connected to life support machines. Upon further prompting, life-prolonging treatments were viewed as burdensome. Preferred place of death and last rites Participants preferred to die at home and considered it an important part of their cultural and religious beliefs to have the last rites performed. Some even expressed concerns that their wishes may not be fulfilled by family members. Reluctance to inconvenience others, however, had also led to some deciding to leave the decision to family members. Theme 2: Feeling isolated Communicating end-of-life preferences The participants' EOL wishes were often not communicated to family members or HCP. Nevertheless, they did believe that it was important to share their feelings and talk about EOL, but preferred to delay this to a more convenient or opportune moment. Participants also expressed that they had not yet communicated their EOL preferences, as they had never been asked. Reluctance to discuss end-of-life issues Participants showed reluctance to discuss EOL because they were worried about upsetting or burdening others needlessly. They were hesitant to bother HCP because they always seemed to be busy. They were also concerned about upsetting their family members emotionally. Participants, however, had anticipated that their doctor would bring up EOL issues with them when the time was right or the need arose. Theme 3: End-of-life decision-making Making their own decision Participants preferred to make their own decisions on EOLC. They believed that it was their right to make their own decisions and that others should respect their wishes. One participant had left verbal instructions on his EOL preferences with his wife, while another participant preferred a living will to avoid family conflict. Family as surrogate decision-makers Family involvement in EOL decision-making was viewed as important, and family members were expected to act as surrogate decision-makers if the participant lost capacity. Some, however, preferred to allow their adult children to make decisions on their behalf, despite the presence of decision-making capacity. Theme 4: Emotional support Healthcare provider as a support provider Participants saw the role of HCP as the main care provider to manage their physical burden rather than provide emotional care, although some felt that it was important to receive emotional support from HCP. The main reason to avoid seeking support from HCP was their heavy workload. Family and friends as support providers Participants believed that it was important to receive emotional care and continuous support. They sought social and emotional support from family and friends rather than from HCP, who were perceived to be too busy. Spirituality and prayer support from religious groups were seen as mechanisms used to cope with illness. DISCUSSION Over the past decades, there has been more discussion in Asian society concerning patient autonomy and the significance of their expressed wishes. End-of-life care preferences vary based on an individual's experience in struggling with his/her illness. Participants in this study reported a strong preference for autonomy with family surrogates, but felt that life must go on even when they felt alone on this journey. While they strived to maintain their QoL by not thinking about death, they did not wish to receive life-prolonging treatment and preferred to die at home. Persons living with haemodialysis were generally not asked about EOL preferences and were, themselves, reluctant to discuss EOL. They tended to seek support from family and friends instead of HCP, as HCP were perceived to be too busy. Participants seemed to deal with life's ambiguity by focusing on the present moment. They sought to live well, continue their duties and social responsibilities, preserve some semblance of normalcy and feel in charge of their health and welfare, which included but was not limited to job, family obligations, and social and recreational activities. This finding reveals the desire to preserve positive mental health by accepting and adjusting to the changes brought about by ESKD. Evidence indicates that there is a significant relationship between hopefulness and mental health among people with chronic illness, in that people with positive thinking have more control over their emotions, are more confident in managing their symptoms and experience a better QoL.[17,18,19] An adoptive coping mechanism is enacted when an individual believes he/she has control over a stressful situation by doing something constructive to alter the source of stress.[20] This behaviour is related to a person's perception of well-being, which can be described as the ability to engage and connect with others and to come to terms with the present.[21] Hence, counselling and continuous support for patients and family should be incorporated in the dialysis centres. The willingness of a person on haemodialysis to consider HCP as a source of emotional support is dependent on role recognition, which addresses both the psychosocial and physical burden. The current study population identified family and friends as the main source of emotional support, while HCP were seen as essential in providing emotional care. Management of emotional needs remains suboptimal in dialysis centres.[22,23] Practical support on symptom management and prevention of secondary complications of ESKD are typically prioritised above psychosocial needs, as dialysis centres are commonly inadequately resourced.[1] In addition, competing priorities, an uncertain disease trajectory, reluctance and lack of training are barriers preventing HCP from initiating such discussions.[24,25] Given the need for emotional support, it is recommended that dialysis centre personnel also provide psychology support services that include patient-centred care to help patients cope with their condition. More research is needed to explore the readiness of HCP to handle the psychological aspect of patient care in the dialysis units. The desire to not receive prolonging treatment at EOL and to die at home was clearly expressed by those interviewed in this study. Similar to the findings in previous studies, our study showed that patients preferred to have a quick, painless death, to not be dependent on others, and to retain the ability to make their own decisions, instead of having to undergo aggressive treatment.[9,11] Nevertheless, patients who opt for comfort care may do so out of worry, including about burdening others, being unemployed and dependent on family for financial support, not finding a listener, feeling disconnected and inability to communicate with HCP, and having low health literacy.[8,12,14,24,25,26] The practice of EOLC in the Asian context, where disease is considered a family matter, is significantly influenced by cultural beliefs.[27,28,29] The idea of 'filial piety' placed great demands on adult children to take care of their elderly parents.[27,28,29,30] Financial burden, which can be related to employment status, salary and income class, can influence a participant's decision to receive comfort care to relief his/her family of the burden.[26] However, further studies are needed to substantiate this. The belief that discussing death and dying is taboo and withholding the diagnosis out of concern that the patient would give up are two factors that prevent the the discussion of EOLC.[28,29,31,32] Low health literacy is more prevalent in older adults and those with poor literacy. However, it can also be present in highly educated people and is associated with lower levels of engagement in decision-making with HCP.[24,33] It is necessary to develop strategies that involve patients, families and HCP to improve EOL communication among people with ESKD. This study was limited by the restriction of sampling to two dialysis centres from a single geographical location and the sample comprising mainly those from the Chinese ethnic group. Sample representativeness may have been limited by the reluctance to discuss EOL issues. Nevertheless, the chronicling of opinions on EOL discussions within this population represents a small breakthrough, which will pave the way for future research in this area. Strategies to improve the engagement of participants in EOL discussions should also be explored in future studies. This study serves to inform clinical practice regarding EOL discussions, preventing undesired and unnecessary delivery of life-prolonging treatments and potentially protecting an individual's right to a good, dignified death. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.