For patients who are near the end of life, an inevitable step is discussion of a do-not-resuscitate (DNR) order, which involves patients, their family members and physicians. To discuss DNR orders, patients and family members should know the meaning of the order and cardiopulmonary resuscitation (CPR) which includes chest compression, defibrillation, medication to restart the heart, artificial ventilation, and tube insertion in the respiratory tract. And the following issues should be considered as well: patients' and their families' autonomy, futility of treatment, and the right for death with dignity. Terminal cancer patients should be informed of what futility of treatment is, such as a low survival rate of CPR, unacceptable quality of life after CPR, and an irremediable disease status. In Korea, two different law suits related to life supporting treatments had been filed, which in turn raised public interest in death with dignity. Since the 1980s, knowledge of and attitude toward DNR among physicians and the public have been improved. However, most patients are still alienated from the decision making process, and the decision is often made less than a week before death. Thus, the DNR discussion process should be improved. Early palliative care should be adopted more widely.
Purpose: This study was conducted to develop a measuring tool for spiritual care performance of hospice team members. The tool may be utilized for providing hospice patients with more systematic and standardized spiritual tares. Methods: The concept and questions of the tool were developed, and then its validity and reliability were tested. For the validity and reliability tests, a self-reported questionnaire comprising 33 questions with 4 point scale ($1{\sim}4$), was developed, and the data were collected from 192 hospice team members from December 2005 to February 2006. Results: Thirty three questions, drafted through literature review and professional consultation, were reviewed by 20 professionals for their validity, were revised and supplemented resulted in the final 33 questions. The questions with a correlation coefficient grater than .30 were selected: all the 33 questions were selected based on this criterion. The reliability coefficient, Cronbarh's ${\alpha}$, was 0.95. The 33 questions were analyzed for factors, and six factors were extracted: relationship formation and communication, encouragement and promotion of spiritual growth, linking with spiritual resources, preparation of death, evaluation and quality control for spiritual intervention, Intervention, and spiritual assessment for intervention. Conclusion: The tool developed in this study includes six factors and has high level of reliability. This tool Will greatly contribute to assess and improve hospice care services, providing systematic and standardized spiritual cares for terminally ill patients and their families.
Purpose: End-of-life (EoL) decisions are challenging and multifaceted for patients and physicians. This study was aimed to explore how EoL care is practiced for patients with a do-not-resuscitate (DNR) order. Methods: We retrospectively analyzed medical records of patients who died after agreeing to a DNR order in 2016 at a university hospital. Characteristics including cause of death, intensity of EoL care, and other factors were reviewed and statistically analyzed. Results: Of total 375 patients, 170 patients (45.3%) died with malignancies, and 205 patients (54.6%) with other causes involving the central nervous system (19.2%), pulmonary (14.7%), cardiologic (6.7%) and infectious (6.4%) conditions. Both the cancer and non-cancer patient groups showed a short duration from DNR to death (median 3 days vs 2 days, P=0.629). An intensive care group comprising patients who received one or more intensive treatments such as ventilator (n=205) showed a higher number of non-cancer patients and a shorter duration from DNR to death than a group that withheld treatment before DNR (P<0.05). Conclusion: EoL decisions were made very late by both cancer and non-cancer patients. About half of the patients did not have cancer, and two-thirds of them decided DNR during intensive treatment. To make a good EoL decision, a shared decision making with patients should be done at an earlier stage.
Park, Theresia;Ra, Jeong-Ran;Seo, In-Ok;Cho, Young-Yee;Choi, Suk-Kyung;Park, Myung-Hee;Heo, Jeong-Hee;Kim, Eun-Kyung
Journal of Hospice and Palliative Care
/
v.2
no.2
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pp.91-100
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1999
Purpose : This study was performed to investigate the satisfaction in the hospice services provided for inpatient families and bereaved families whose members had been admitted to the hospice unit at Kangnam St. Mary's Hospital to improve the quality of care for the terminally ill patients and their families. Methods : This sample consisted of 33 families of hospice patients during the period of April to lune, 1998 and 30 bereaved families whose patients had died from March, 1993 to March, 1998. The data were collected through a self-report questionnaire and analyzed using t-test and ANOVA. Results : 1) The satisfaction level of inpatient families and bereaved families showed the mean value of 3.5 where the highest value is 5.0. 2) According to age, the level of satisfaction of inpatient families had significant differences in the fields of hospice philosophy, support for the family, medical management and nursing management(P=0.0001). The level of satisfaction of bereaved families showed significant differences in the field of support for the family, medical management, nursing management, and facilities of the hospice unit(P=0.0001). 3) By family relationship, the level of satisfaction of inpatient families had significant differences in the fields of hospice philosophy, support for the family, medical management and nursing management (P=0.0001). 4) According to religion, the level of satisfaction of inpatient families had significant differences in the fields of hospice philosophy, support for the family and nursing management (P=0.0001), but there was no significant difference for the bereaved families. Conclusions : The findings of this study showed that hospice services had positive influence on families with terminal disease such as cancer. To improve the level of satisfaction in the hospice services for families with hospice patients, we need to provide care by an interdisciplinary hospice team approach, and to assess needs of the families according to their socio-psychological characteristics. Further studies need to be conducted with large samples.
Purpose : The purpose of this study was to investigate the impact of depression, discomfort, spirituality, physical care, and opioid use on pain with terminally ill cancer patients in the hospice units. Method : The convenient sample of this study consisted of 58 terminally ill cancer patients at three hospice units in university-affiliated hospitals. Patients were interviewed with structured questionnaires. The data was analyzed using ANOVA, Pearson correlation coefficient, and multivariate multiple regression. Result : The results of this study were as follows : 1) The mean age of the participants was approximately 57 years. Regarding diagnosis, stomach cancer showed the highest frequency (24.1%), followed by lung cancer (17.2%) and rectal cancer (13.8%). Regarding motivation for admission to the hospice unit, the majority of the participants indicated pain control (67.2%), followed by spiritual care (39.7%), and symptom relief (27.6%). 2) The mean pain level measured by VAS was 5.13 (${\pm}2.61$). Regarding pain type, the highest pain frequency the participants experienced was deep pain (53.4%), followed by multiple pain (20.7%), intestinal pain (17.3%), and neurogenic (5.2%) and superficial pain (3.4%). 3) Regarding the factors influencing pain, the pain level was significantly affected by the depression level (P<0.01) and the opioid use (P<0.01). Conclusion, In summary, the higher the level of pain the terminally ill cancer patents had the higher the depression level as well as the opioid use. Thus, health care professionals need to continuously provide holistic care for them to die comfortably.
Purpose: The purpose of this narrative study was to understand how family caregivers interpreted themselves life during caring for dying patients with gliobalstoma, and how they integrated these experiences into their personal biographies. Methods: Three family caregivers were recruited for the study. Data were collected through a series of audio-taped unstructured interviews and conversations with participants. The interviews and observation were conducted between October and November, 2011. Data were analyzed using psychosocial analytical methods that combined case based, in-depth staged analysis of narratives. Results: The life experiences of the family caregivers with a dying family member were summarized as, in their own voices, 'the repetition of gliobalstoma,' 'a smart patient,' 'being obsessed with rehabilitation treatment,' 'the frustration from nothing but just looking at the suffering of the patient,' and 'a stubborn son'. Conclusion: Caregiving was characterised by various roles and life changes from the moment of diagnosis. Family caregivers of brain tumor reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.
Purpose: This study was conducted to better understand the illness experiences and palliative care needs in community-dwelling persons with cardiometabolic diseases. Methods: This qualitative descriptive study was conducted with 11 patients (and three family members) among 28 patients contacted. Interviews were led by the principal investigator in her office or at participants' home depending on their preference. All interviews were digitally recorded and transcribed by a research assistant. The interviews were analyzed by two independent researchers using a conventional method. Results: Participants' ages ranged from 42 to 82 years (nine men and two women). Three themes were identified: (1) same disease, but different illness experiences; (2) I am in charge of my disease(s); (3) preparation for disease progression. Participants were informed of the name of their disease when they were diagnosed, but not provided with explanation of the diagnosis or meant or how to do self-care to delay the disease progression, which increased the feelings of uncertainty, hopelessness and anxiety. Taking medication was considered to be the primary treatment option and self-care a supplemental one. Advanced care plans were considered when they felt the progression of their disease(s) while refraining from sharing it with their family or health care professionals to save their concerns. All participants were willing to withhold life-sustaining treatment without making any preparation in writing. Conclusion: Education on self-care and advanced care planning should be provided to community-dwelling persons with cardiometabolic diseases. A patient-centered education program needs to be developed for this population.
Kim-Knauss, Yaeji;Jeong, Eunseok;Sim, Jin-ah;Lee, Jihye;Choo, Jiyeon;Yun, Young Ho
Journal of Hospice and Palliative Care
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v.22
no.4
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pp.145-155
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2019
Purpose: Amendment to the Act on Decisions on Life-sustaining Treatment was recently enacted to designate long-term care hospitals as providers of hospice and palliative care. Despite its benefit of providing improved accessibility to end-of-life care, the amendment has raised concerns about its effect on quality of service. This study aimed to use information obtained from an expert group interview and previous studies to compare how cancer patients, family caregivers, physicians, and the general Korean population perceive the potential benefits and risks of this amendment. Methods: We conducted a multicenter cross-sectional study from July to October 2016. The included participants answered a structured questionnaire regarding the extent to which they agree or disagree with the questionnaire items indicating the potential benefits and risks of the amendment. Chi-square tests and univariate and multivariate logistic regression analyses were performed. Results: Compared with the general population, physicians agreed more that long-term care hospitals are currently not adequately equipped to provide quality hospice and palliative care. Family caregivers found improved access to long-term care hospitals more favorable but were more likely to agree that these hospitals might prioritize profits, thereby threatening the philosophy of hospice care, and that families might cease to fulfill filial responsibilities. Compared with the general population, cancer patients were more concerned about the potentially decreased service quality in this setting. Conclusion: Although potential service beneficiaries and providers expected improved accessibility of hospice and palliative care services, they were also concerned whether the system can provide adequate quality of end-of-life care.
Purpose: This study aimed to distinguish and describe the types of perceptions of do not resuscitate (DNR) proxy decisions among families of elderly patients in a long-term care facility. Methods: This exploratory study applied Q-methodology, which focuses on individual subjectivity. Thirty-four Q-statements were selected from 130 Q-populations formed based on the results of in-depth interviews and literature reviews. The P-samples were 34 families of elderly patients in a long-term care hospital in Busan, Korea. They categorized the Q-statements using a 9-point scale. Using the PC-QUANL program, factor analysis was performed with the P-samples along an axis. Results: The families' perceptions of the DNR proxy decision were categorized into three types. Type I, rational acceptance, valued consensus among family members based on comprehensive support from medical staff. Type II, psychological burden, involved hesitance in making a DNR proxy decision because of negative emotions and psychological conflict. Type III, discreet decisions, valued the patients' right to self-determination and desire for a legitimate proxy decision. Type I included 18 participants, which was the most common type, and types II and III each included eight participants. Conclusion: Families' perceptions of DNR proxy decisions vary, requiring tailored care and intervention. We suggest developing and providing interventions that may psychologically support families.
This study was conducted to be helpful to the expansion and development of hospice and to provide the basic data for Hospice palliative care by identifying the general characteristics of curriculum of hospice perception, level of perception, practice experiences, routes, times, meanings, needs, targets, supply, types, organizations, experiences, use of hospice and physical, emotional, social and spiritual aspects of hospice services. Study tools which were used in this study were composed of three sections. Survey paper is 3-point Likert scale which is composed of 6 questions of general characteristics, nominal scale of 24 questions about hospice perception and hospice service contents. Respondents can reply with 3 answers of Necessary (1), Mediocre (2), and Not necessary (3), in physical, emotional, social and spiritual aspects. Score ranges of this tool are from minimum of 24 points to maximum of 72 points and higher scores mean higher perception of Hospice. Hospice is a behavior to take care of terminal patients who are waiting for death and their family and it should be conducted physically, emotionally, socially and spiritually in order that the patients could meet their last moments of life by maintaining a high quality of life, human dignity and peace for the rest of their lives. Hospice could be mentioned to be a comprehensive care to relieve the pains and grieves of bereaved family.
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