Introduction
The main cause of death per 100,000 population in South Korea is cancer (150.9), followed by cardiovascular disease (52.4) and cerebrovascular disease (48.2; Statistics Korea, 2015). Among the top 10 causes of death, mortality from cancer accounted for 28.6%, whereas mortality from chronic diseases, including cardiovascular disease, cerebrovascular disease, pneumonia, diabetes, respiratory disease, liver disorder, and hypertensive diseases, accounted for 34.5%, indicating a higher rate of death due to noncancer chronic diseases (Statistics Korea, 2015). In addition, the rising average age of healthcare consumers means that the prevalence of various chronic diseases is increasing. Therefore, professional care for patients with chronic diseases other than cancer is becoming more important (Reinhard & Young, 2009).
Patients at the end of life with a noncancer diagnosis have needs that are complex and difficult to solve, and these patients tend to complain of various problems and symptoms (Stiel et al., 2014). Compared with patients with cancer, patients with a noncancer diagnosis are older, have multiple disabilities that affect daily life and cognitive function, and require a longer period of care (Ikezaki & Ikegami, 2011). In addition, they frequently have acute clinical symptoms and associated diseases, are more dependent, and appear to have more invasive interventions that require hospitalization (K. S. Lau et al., 2010). In a German study, patients with a noncancer diagnosis complained of neurological symptoms, psychological problems, and insomnia (Stiel et al., 2015). These observations indicate that patients with a noncancer diagnosis may experience a higher symptomatic burden during the end of life than patients with cancer, which may present care needs in multidimensional areas. Unmet palliative care needs have been shown to negatively affect the overall quality of life (QoL) of patients (Buzgova & Sikorova, 2015). However, in noncancer diseases, diagnosis and assessment of disease progression may be difficult because of the relative difficulty of assessing the complicated needs of patients with a noncancer diagnosis, as compared with patients with cancer. Therefore, it is difficult to determine the boundaries of the end-of-life care period (McIlfatrick, 2007). For this reason, needs assessments for patients at the end of life with a noncancer diagnosis and palliative care are relatively limited, and related resources, care services, and an overall social support system are lacking (Burt, Shipman, Richardson, Ream, & Addington-Hall, 2010; Fitzsimons et al., 2007; Kralik & Anderson, 2008; Stiel et al., 2015). Previous studies have reported that patients with a noncancer diagnosis do not receive effective symptom management or sufficient care, although they experience many end-of-life symptoms (Burt et al., 2010). However, 69%-82% of older adults reportedly desire palliative care regardless of diagnosis (Murtagh et al., 2014). Thus, appropriate and continuous palliative care to improve the QoL of patients at the end of life is essential, and the values and multidimensional care needs of patients must be understood in advance (Ben Natan, Garfinkel, & Shachar, 2010). Shimanouchi (2007) recommended that healthcare providers consider the specific care needs of each patient based on end-of-life stage and defined the four stages as beginning, stable, near-death, and afterdeath. Palliative care must be provided according to different illness trajectories for patients with a noncancer diagnosis, who experience a gradual disease process and unpredictable conditions that may rapidly deteriorate (Kralik & Anderson, 2008).
The initial assessment of a patient's condition is critical to the provision of patient-centered care. The Palliative Performance Scale (PPS) is a functional performance instrument in which a PPS level lower than 40% typically signifies low functional status, nutritional impairment, and impaired cognition (Wharton, Manu, & Vitale, 2015). The initial PPS level is a significant predictor of survival (F. Lau et al., 2009). The PPS level may be used to identify significant differences in the severity of various symptoms, with prior findings associating increasingly severe levels of fatigue, anorexia, and dyspnea with a decreasing PPS level (Kamal, Nipp, Bull, Stinson, & Abernethy, 2015). In addition, PPS level may be used to identify differences in mortality rate and is particularly effective in predicting the prognoses of patients with a noncancer diagnosis (Harrold et al., 2005); it is therefore necessary to identify care needs based on the PPS.
The purpose of this study was to assess the physical, psychological, social, and spiritual care needs of patients with chronic diseases other than cancer who received home care, based on end-of-life stage and PPS level, from the perspective of home healthcare nurse specialists (HHNS). In addition, this study aimed to identify the importance of patient-centered needs and the inherent difficulties in the care process. These findings will contribute to the improvement of the overall quality of palliative care by addressing unmet end-of-life care needs effectively.
Methods
Study Design
This retrospective survey, conducted from the perspective of HHNS, was designed to assess the care needs of patients with a noncancer diagnosis who received nursing care at home during end of life and who later died. The HHNS who participated in this study were all qualified hospice and palliative care professionals who were employed by Seoul St. Mary's Hospital. Forty-nine HHNS responded to the structured questionnaire by reviewing the medical and nursing records of their patients.
Participants
The inclusion criteria for patients, based on Kim, Lee, and Shimanouchi (2014), were (a) aged 40 years or older; (b) received continuous home care nursing throughout the stable and final death stages; (c) died between September 1, 2014, and December 31, 2015; and (d) diagnosed with a noncancerous disease such as cerebrovascular, cardiovascular, nervous, pulmonary, musculoskeletal, digestive, and urogenital disorders. Baseline data were obtained from 115 patients for this analysis. According to Shimanouchi (2007), end-of-life stages comprise the beginning, stable, near-death, and afterdeath stages. The beginning stage represents the first week after starting home care, the stable stage is defined as the second week after home care until 1 week before patient death, and the near-death stage is the week immediately before patient death (Kim et al., 2014; Lee & Kim, 2012). In this study, the stable and near-death stages were used to assess care needs according to differences between these two stages. The HHNS determined the periods for the stable and near-death stages for each patient based on date-of-death information in patient records.
Instruments
The demographic characteristics of the patients were obtained from medical and nursing records and included gender, age, diagnosis, PPS level, vision, hearing, type of primary caregiver, age of primary caregiver, and duration of home care nursing. Primary caregiver refers to the family member who took principal care of the patient. The PPS (Victoria Hospice, 2001) is an indicator that predicts the survival of patients with life-threatening illnesses. It consists of five areas, including ambulation, activity level and evidence of disease, self-care, oral intake, and level of consciousness. The PPS level ranges from 0% (death) to 100% (normal function), and PPS scores are in 10% increments only. An increased level indicates a better level of health functioning in the patient. The PPS was categorized as severely ill, terminal state (10%-20%), disabled state (30%-40%), and moderate state (50%-100%) in this study based on Harrold et al. (2005). The PPS level was measured before patients enter the end-of-life period and was used to assess terminally ill patients' functional status from nursing records.
End-of-life care needs were assessed according to the stages developed by Shimanouchi (2007). This tool was initially developed based on literature reviews and a preliminary survey intended for patients with a noncancer diagnosis who received home care during the terminal stage. This tool was validated in a prior study (Kim et al., 2014), with a Cronbach's [alpha] of .97. Eight areas comprising 51 items were addressed with regard, respectively, to level of importance and difficulty: support for fundamental needs (11 items), management of physical symptoms (eight items), psychological support (four items), spiritual care (five items), death management (six items), coordination among family or relatives (five items), loss/grief care (four items), and coordination among care team members (eight items). Each item was scored on a 5-point Likert scale in which 0 indicated "not at all important/difficult" and 4 indicated "very important/difficult." A higher score indicates increased levels of both importance and difficulty.
Data Collection
This study was conducted with the approval of the institutional review board (IRB) of Seoul St. Mary's Hospital in Korea on December 23, 2015 (IRB protocol no. KC15RISE0945). The HHNS in charge of each patient had provided direct care to the patients while they were alive. The 49 HHNS provided written consent, and the research team conducted training on how to fill out the questionnaires for each stage. The HHNS were asked to fill out demographic characteristics, medical state, and PPS information using patient medical records and patient end-of-life care needs based on their recollection of the situation during the stable and near-death stages of each patient. To minimize recall bias, the research team recommended that the HHNS rely as much as possible on nursing records when filling out information on patient end-of-life care needs. Data were collected from January 1 to March 31, 2016.
Data Analysis
The collected data were analyzed using IBM SPSS Statistics Version 20.0 (IBM, Armonk, NY, USA), and two-tailed tests were performed with a threshold for statistical significance of .05. The general characteristics of the patients with chronic diseases other than cancer were analyzed using frequency, percentage, mean, and standard deviation. Changes in care needs across end-of-life stages were analyzed via paired t tests. The importance of care needs relative to the PPS was compared via a one-way analysis of variance, dividing the stable and near-death stages into eight categories. Scheffe's test was used as a post hoc test.
Results
General Characteristics
Most of the 115 patients were women (65.2%), and the mean age was 83.79 (+/- 9.67) years. The most common patient diagnosis was cerebrovascular disease (32.5%), followed by cardiovascular disease (13.2%) and pulmonary disease (12.3%). Patients had various chronic diseases (e.g., cerebrovascular, cardiovascular, lung, liver, kidney, nervous system, and musculoskeletal system diseases), and the average number of comorbidities was 2. Regarding functional state, as assessed by the PPS, the PPS 30%-40% group constituted 50.4% of the study population. Patients with normal vision and hearing constituted 48.7% and 36.5%, respectively, of the study population. In total, 30.7% of the patients had a daughter-in-law or son as their primary caregiver, whereas 29.7% had a spouse as their primary caregiver. The average age of primary caregivers was 61.97 (+/- 13.58) years. The patients received home care for an average of 1.68 (+/- 0.73) years (Table 1).
Level of Importance of Care Needs by End-of-Life Stage
The area and item that had the highest importance level were the "coordination among family or relatives" area, with a score of 3.13 (+/- 0.72), and the "caregiver's health status" item, with a score of 3.38 (+/- 0.74) in the stable stage. The area and item that had the highest importance level were the "management of physical symptoms" area, with a score of 3.10 (+/- 0.72), and the "dyspnea" item, with a score of 3.44 (+/- 0.84) in the near-death stage.
The importance of the "support for fundamental needs" area had a score of 3.06 (+/- 0.64) in the stable stage, which was significantly increased compared with 2.81 (+/- 0.83) in the near-death stage (p = .002). The importance of the "coordination among family or relatives" area had a score of 3.13 (+/- 0.72) in the stable stage, which was significantly increased compared with 3.04 (+/- 0.80) in the near-death stage (p = .042). In contrast, the importance of the "loss, grief care" area had a score of 3.10 (+/- 0.89) in the near-death stage, which was significantly increased compared with 2.93 (+/- 0.76) in the stable stage (p = .021; Table 2).
Level of Difficulty of Care Needs by End-of-Life Stage
The area "management of physical symptoms" exhibited the highest level of difficulty in both stages: 2.29 (+/- 0.96) in the stable stage and 2.53 (+/- 1.00) in the near-death stage. The item "daily life pattern/preferences in daily life" in the stable stage had a score of 2.48 (+/- 1.00), whereas the item "dysphagia" in the near-death stage had a score of 2.83 (+/- 1.29), indicating that these items had the highest difficulty at each stage.
The "death management" area had a score of 1.95 (+/- 1.04) in the stable stage, which was significantly increased compared with 1.80 (+/- 1.16) in the near-death stage (p = .020). In contrast, the difficulty in the "management of physical symptoms" area had a score of 2.53 (+/- 1.00) in the near-death stage, which was significantly higher compared with 2.29 (+/- 0.96) in the stable stage (p = .001; Table 2).
Differences Between the Levels of Importance and Difficulty by End-of-Life Stage
The high levels of importance and difficulty of care needs indicate that they are critical. However, these needs are not easily met. The total mean score was used as a cutoff point to determine care needs with high levels of importance and difficulty at each stage. In the stable stage, the total mean scores for importance and difficulty were 2.98 (+/- 0.60) and 1.97 (+/- 0.79), respectively. In the near-death stage, the mean scores for importance and difficulty were 2.99 (+/- 0.62) and 2.00 (+/- 0.83), respectively.
In the stable stage, the "support for fundamental needs" area included eight items that were identified as important and difficult-to-solve problems: "daily life pattern/preferences in daily life"; "fall risks"; "personal hygiene"; "self-care capacity, activities of daily living (ADL) and instrumental activities of daily living (IADL) status"; "existence of dementia/problematic behaviors"; "problems in defecation/urination"; "defecation control"; and "sleep states, use of sleeping pills." The "management of physical symptoms" area included six items that were identified as important and difficult-to-solve problems: "dyspnea," "symptomatic problems with digestive systems," "dysphagia," "fluid in-out balance/food in-take and nutritional states," "skin trouble," and "pain control." Both the "confirming family's wishes or demands on treatments and service" item within the "psychological support" area and the "sufferings or spiritual pain caused by feelings of meaninglessness" item within the "spiritual care" area represented important problems that were difficult to solve. In the "death management" area, the "patient's/family's understanding about disease process and changes" and "fear and anxiety towards death and disease aggravation" items were recognized as being both important and difficult. In the "coordination among family or relatives" area, the "caregiver's health status" item indicated its importance and difficulty. The "patient/family comprehension about medical treatments" item within the "coordination among care team members" area indicated importance and difficulty.
In the near-death stage, within the "support for fundamental needs" area, the "problems in defecation/urination" item indicated importance and difficulty. The "management of physical symptoms" area included six items identified as important and difficult to solve: "dyspnea," "symptomatic problems with digestive systems," "dysphagia," "fever or signs of infection," "fluid in-out balance/food in-take and nutritional states," and "skin trouble." In addition, the "fear and anxiety toward death and disease aggravation" item in the "death management" area, the "caregiver's health status" item in the "coordination among family or relatives" area, and the "anxiety and psychological states" item in the "loss, grief care" area were identified as important and difficult to solve (Table 2).
Importance of Care Needs by PPS Level
The PPS levels were categorized into three groups: 10%-20%, 30%-40%, and 50% and higher. There were significant differences among the three groups in the "management of physical symptoms" (p = .050), "psychological support" (p = .035), and "coordination among family or relatives" (p = .014) areas in the stable stage. In the near-death stage, there was a significant difference only in the "coordination among family or relatives" area (p = .001).
Within the PPS 10%-20% (p = .047) and 30%-40% (p = .025) groups, the importance of "support for fundamental needs" was significantly increased in the stable stage compared with the near-death stage. Within the PPS 50% group, the importance of "coordination among family or relatives" was significantly increased in the stable stage compared with the near-death stage (p = .007), whereas the importance of "loss, grief care" was significantly increased in the near-death stage compared with the stable stage (p = .019; Table 3).
Discussion
This study assessed the levels of importance and the difficulties in meeting the care needs of patients at the end of life with a noncancer diagnosis based on end-of-life stages and PPS. The "coordination among family or relatives" area was the most important care need in the stable stage, with a higher score compared with the near-death stage. Deterioration of the physical condition in patients with a noncancer diagnosis may decrease independence and impose a burden on family caregivers (Fitzsimons et al., 2007). Collins and Swartz (2011) found that one third of family caregivers reported a high care burden and that most experienced insomnia and depression; half of the family caregivers had more than one physical illness. The role of informal caregivers directly affected their physical and psychological health, and they could not afford to take care of themselves because of a lack of time (Ranmuthugala, Nepal, Brown, & Percival, 2009). Therefore, policies for community-based long-term care must support the needs of primary caregivers, and healthcare providers should try to facilitate the well-being of family caregivers (Ranmuthugala et al., 2009; Reinhard & Young, 2009). In addition, informational needs were important. The "knowledge and skills of caregiver" item in the "coordination among family or relatives" area showed higher importance in the stable stage than in the near-death stage. Heyland et al. (2006) reported that family caregivers and patients wanted to thoroughly understand the disease medical state, treatment, and process. Moreover, caregivers wanted to receive help through various information sources related to making difficult treatment decisions. The caregivers needed skills, abilities, and knowledge regarding patient care at home. However, most felt that training was inadequate (Collins & Swartz, 2011). Thus, healthcare providers should educate informal caregivers about the knowledge and skills necessary to efficiently care for patients with a noncancer diagnosis from the early stage of a disease onward. Educating caregivers regarding the various signs of the process of dying is necessary to help them cope with death and allow their participation in the treatment plan and decision making during the end-of-life period.
Within the "spiritual care" area, the "sufferings or spiritual pain caused by feelings of meaninglessness" item increased in both importance and difficulty during the stable stage compared with the near-death stage. These findings indicate that patients experience spiritual suffering because of the helplessness and meaninglessness of life with disease. Patients want to find their roles in life independently and have autonomy even during the dying process (Ben Natan et al., 2010). Therefore, psychological and spiritual support is necessary to elevate the self-esteem of patients from the stable stage onward.
In the "death management" area, the "delivering messages between patient and family" and "wishes of the disease and of prolonging life with medical measures" items were more difficult to solve in the stable stage compared with the near-death stage. Thus, early mediation of different opinions through open communication between healthcare professionals, patients, and family is crucial because the importance of care needs may differ according to individual perspectives (Ang, Zhang, & Lim, 2016; Ben Natan, 2008; Heyland et al., 2006). Furthermore, it is critical to provide personal care that maximizes the self-determination of patients depending on patient-centered needs and preferences through communication. Moreover, the "patient's will to stay home until the end-of-life" item was important and more difficult to solve in the stable stage compared with the near-death stage. Increasingly, many individuals prefer to receive home-based end-of-life care and die at home (Gomes, Calanzani, Gysels, Hall, & Higginson, 2013). Thus, HHNS should identify in advance whether a patient wants to stay at home at the end of life and, if the answer is affirmative, should plan for the patient's death at home.
In the near-death stage, the "loss, grief care" area had the highest importance, which was more important compared with in the stable stage. Specifically, the "anxiety and psychological states" item was important and difficult to solve. Moreover, the "fear and anxiety toward death and disease aggravation" item was highly important and difficult to solve in both stages. Patients with a noncancer diagnosis had anxiety because it was difficult to accurately determine the prognosis from uncertain illness trajectories. Thus, nurses should help patients and families plan for a good death at the end of life by providing care that is centered on emotional communications and relationships (Murray, Kendall, Boyd, Worth, & Benton, 2004). In particular, patients want someone to listen to their fears (Ben Natan, 2008; Ben Natan et al., 2010; Heyland et al., 2006). Thus, it is also necessary to provide psychological support to alleviate the potential fear and anxiety of the patient and family.
The area that exhibited the most difficult care needs was the "management of physical symptoms," which increased in difficulty from the stable stage. Specifically, the "dyspnea" item had the highest importance and highest increased difficulty, whereas the "dysphagia" item was associated with the highest difficulty in the near-death stage. Patients with a noncancer diagnosis who struggled with diseases were bedridden for long periods because of worsening physical symptoms in the near-death stage. Thus, healthcare professionals should focus on relieving worsening physical symptoms rather than support for basic needs of daily life during the terminal stage. A study that investigated symptoms in patients at the end of life showed that the condition of patients with a noncancer diagnosis was marked by long-term, gradual, and rapid deterioration (Kralik & Anderson, 2008). However, patients with a noncancer diagnosis received less symptom care and fewer care resources, which were not sufficient to satisfy end-of-life needs compared with patients with cancer (Burt et al., 2010). Thus, various care approaches should be prepared to address unpredictable, long-term diseases during the end-of-life period (Kralik & Anderson, 2008).
In general, the average importance of care needs increased as the initial level of the PPS decreased in overall areas. This means that worsening of the functional health of patients with chronic illness was associated with increased care needs. Thus, it is necessary to set up a specific plan, including end-of-life care, pain and symptom management, ethical issues, grief and bereavement, and preparation for the dying process, through an accurate assessment of the PPS (Wharton et al., 2015). In the stable stage, the PPS 10%-20% group, which had a severely low performance state, exhibited increased care needs in the "management of physical symptoms" area compared with the above 50% PPS group, which had a moderate performance state. As the PPS decreases, patients spend more time in bed because of limitations in activities due to decreased mobility. Moreover, they could not perform self-care and had nutrition deficits due to poor dietary intake, thus increasing the risk of various diseases. According to Kamal et al. (2015), the bothersome symptoms of patients with a noncancer diagnosis changed and symptom severity increased as PPS decreased. Thus, it would be very effective if appropriate and timely care could be provided by anticipating the severity and deterioration of patients' various symptoms through an assessment of the PPS (Kamal et al., 2015). In the "psychological support" area, the average of importance gradually increased as the PPS decreased in the stable stage. The most unfulfilled care needs that terminal patients felt were "respect and support from health professionals" and "autonomy," followed by "physical symptoms," "social area," and "meaning of life and reconciliation." Moreover, these unsatisfied needs decreased the overall QoL of the patients (Buzgova & Sikorova, 2015). Thus, home care should focus on relationships to achieve the integration and dignity of patients and family members through a holistic approach. In addition, nurses should continue to provide integrated care that addresses comprehensively the physical, functional, social, and emotional aspects through an accurate clinical assessment of these patients while focused on long-term care (Reinhard & Young, 2009).
With respect to limitations, this study utilized a retrospective design. Thus, recall bias may affect the information provided by HHNS. Therefore, prospective further studies are needed to directly assess the care needs of patients in depth during end-of-life stages. A previous study showed that patients may have different symptoms and care needs depending on the chronic disease diagnosis and comorbidities (K. S. Lau et al., 2010). However, this study did not identify differences in care needs based on disease type because of the small sample size, which made disease classification difficult. Thus, we recommend that further research investigate the multidimensional care needs according to disease type and comorbidities from a larger sample of patients at the end of life with noncancer diagnoses who live at home.
Conclusions
This study used end-of-life stage and PPS score to assess the levels of importance and difficulty of the multidimensional care needs of patients with a noncancer diagnosis who received end-of-life care at home. HHNS must clearly assess the functional health state and care needs of these patients at the end of life and then comprehensively provide patient-centered palliative care based on this assessment. It would be helpful to identify ways to effectively treat care needs that are of high importance and difficulty in the end-of-life stages to ensure the QoL of patients with a noncancer diagnosis who receive home care and of their informal caregivers.
Acknowledgments
This study was supported by a grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute, funded by the Ministry of Health and Welfare, Republic of Korea (Grant number HI15C0828).
References