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Journal articles on the topic 'Terminally ill – Home care – Botswana'

Author: Grafiati

Published: 4 June 2021

Last updated: 13 February 2022

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1

Ndaba-Mbata, R. D., and E. S. Seloilwe. "Home-based care of the terminally ill in Botswana: knowledge and perceptions." International Nursing Review 47, no. 4 (December 2000): 218–23. http://dx.doi.org/10.1046/j.1466-7657.2000.00023.x.

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2

Norwood, Michael. "Home care of the terminally ill." American Journal of Health-System Pharmacy 47, no. 8_suppl (August 1, 1990): S23—S26. http://dx.doi.org/10.1093/ajhp/47.8_suppl_1.s23.

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3

Kawagoe, Shohei. "Home care medicine for terminally ill patients." Rinsho Shinkeigaku 53, no. 11 (2013): 1295. http://dx.doi.org/10.5692/clinicalneurol.53.1295.

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4

Phillips, Kay. "Pediatric hospice: Home care for the terminally ill child." Journal of Home Health Care Practice 1, no. 3 (August 1988): 37–50. http://dx.doi.org/10.1177/108482238800100308.

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Peruselli, Carlo, Elena Camporesi, A. Maria Colombo, Monica Cucci, P. G. Sironi, Marco Bellodi, Romana Cirillo, Elsa Love, and Rita Mariano. "Nursing Care Planning for Terminally Ill Cancer Patients Receiving Home Care." Journal of Palliative Care 8, no. 4 (December 1992): 4–7. http://dx.doi.org/10.1177/082585979200800402.

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Nursing home care for terminally ill cancer patients was organized according to nursing care plans that were based on diagnoses as recommended by the North American Nursing Diagnosis Association (NANDA). This study was carried out among a sample of 40 patients receiving home health care for a period of 1 to 19 weeks. More than 697 nursing diagnoses were identified in the study. The most frequently recorded nursing diagnoses were anxiety, constipation, and diminished food intake. Fifteen of the 40 patients in the study were able to complete a weekly self-report of their symptoms. The patients’ own descriptions of their symptoms were then compared with their symptoms as identified by nursing staff. There was a congruence in 63% of reported instances. Although nurses’ assessments were not always in agreement with the symptoms reported by the patients, agreement was more frequently found with somatic symptoms than with psychological ones. One conclusion is that nursing plans should incorporate multidimensional methods for assessing patients’ real needs.

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Saleh, Fatima, and Catherine S. O’Neill. "The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain." Clinical Nursing Studies 6, no. 3 (April 2, 2018): 57. http://dx.doi.org/10.5430/cns.v6n3p57.

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Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

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Bendiane, PhDc, Marc Karim, Anne-Deborah Bouhnik, PhDc, Roger Favre, PhD, Anne Galinier, MD, Yolande Obadia, MD, Jean-Paul Moatti, PhD, and Patrick Peretti-Watel, PhD. "Morphine prescription in end-of-life care and euthanasia: French home nurses’ opinions." Journal of Opioid Management 3, no. 1 (January 1, 2007): 21. http://dx.doi.org/10.5055/jom.2007.0035.

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Objective: This study aimed to investigate factors that might lead French homecare nurses to consider the pre-scription of high-dose morphine to terminally ill patients to be euthanasia.Methods: The researchers conducted an anonymous telephone survey among a random sample of602 French homecare nurses (response rate = 75percent) in 2005.Results: Overall, 27percent of responding home nurses considered prescribing high-dose morphine to terminally ill patients to be euthanasia. Such an opinion was more frequently held by older nurses, those who had not followed terminally ill patients during the previous three years, and those with less knowledge about pain management involving opioid analgesics.Conclusion: There is an urgent need to strengthen pain management education among French homecare nurses—especially regarding the use of morphine—in order to both improve their technical skills and correct some misconceptions about opioid analgesics.

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8

Boycheva, Tsvetka, and Mariya Dimitrova. "PROBLEMS OF FAMILIES WITH TERMINALLY ILL." Knowledge International Journal 28, no. 2 (December 10, 2018): 603–11. http://dx.doi.org/10.35120/kij2802603b.

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In recent decades, there has been a growing public interest in palliative care. This is dictated by the ever increasing number of people who need it. With advances in medical science and the development of new technologies, life expectancy has increased, but at the same time, the number of years spent in illness and suffering has increased. Still, death is not defeated, but pain and suffering can be relieved, and the quality of life of the terminally ill and their families can be improved. Palliative care is overwhelming. They target the patient and his family. They meet the psychic, social, spiritual and cultural needs of the patient, provide training and support to relatives. The family is a social institution that ensures the biological and social continuity of the human race. There is a correlation between it and health. Today it is impossible to function and develop properly without providing optimal health to its members. Diseases of a family member adversely affect his or her functions. Reproductive, economic and psycho-emotional function is impaired. A home is a place where one lives fully and most people prefer their care to be done at home. The needs of patients in need of palliative care are specific. Apart from a health problem, they also have spiritual, social and mental needs. The most frequent care of these patients is taken by a relative or a family member. In most cases, they lack the necessary skills, resources and time. This clearly shows that the quality of life of these patients and their families is not guaranteed. The purpose of this study is to find out what influence has the care of terminally ill on his family. The subject of the study is 602 persons, close to terminally ill in 30 medical institutions in the country. Within a six-month period from 01.11.2017 to 30.04.2018. With the help of a direct individual survey, how the care of the terminally ill is reflected in his family was identified. Statistical methods for data processing and analysis were used. Results: The family is experiencing great stress when there is a severely sick patient in it. The lifestyle of the whole family is changing. Negative emotions accumulate and social contacts are disturbed. Economic and social difficulties, lack of time and lack of knowledge and skills are major problems in families with patients in need of palliative care. Respondents want to participate in training for the care of the sick, need professional help and support to ensure a better quality of life for their close and normal family functioning.

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9

Owens, Darrell A. "Hydration in the Terminally Ill." Journal of Hospice & Palliative Nursing 9, no. 3 (May 2007): 122–23. http://dx.doi.org/10.1097/01.njh.0000270001.36496.bd.

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10

HIRABAYASHI, YUKA, MITSUNORI MIYASHITA, MASAKO KAWA, KEIKO KAZUMA, KOHSUKE YAMASHITA, and NAOYUKI OKAMOTO. "Factors relating to terminally ill cancer patients' willingness to continue living at home during the early phase of home care after discharge from clinical cancer centers in Japan." Palliative and Supportive Care 5, no. 1 (February 27, 2007): 19–30. http://dx.doi.org/10.1017/s1478951507070046.

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Objective: To assess the willingness of Japanese terminally ill cancer patients to continue living at home during the early phase of home care after discharge from a Clinical Cancer Center (CCC) in Japan, and to identify factors relating to their willingness to continue living at home.Methods: A cross-sectional questionnaire survey of a convenient sample of both Japanese terminally ill cancer patients and their caregivers (PFCs) was conducted (n = 294, effective response rate 25.0%). Questionnaires were mailed and medical records were accessed for 73 pairs of respondents, comprising one terminally ill cancer patient and one PFC.Results: At about 10 days after discharge, 64 patients (88%) wished to continue living at home. A hierarchical logistic regression analysis was performed on the data. It was found that the fewer the medical treatments undergone (OR = 0.20, 95% CI: 0.05–0.72), the higher the patients' perception that their condition was consistent with care at home (OR = 2.77, 95% CI: 1.08–8.62) and with their functional well-being (OR = 1.45, 95% CI: 1.08–2.17). In addition, the higher the caregivers' satisfaction with life (OR = 2.37, 95% CI: 1.15–5.77), the more willing patients tended to be to continue living at home.Significant of results: The willingness of Japanese terminally ill cancer patients to continue living at home appears to be affected by caregiver status. This indicates a need for discharging facilities to monitor the state of home assistance and to investigate the nature of assistance required for continuing home care.

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Hashimoto, Kotaro, Kazuki Sato, Junko Uchiumi, Akira Demizu, Hajime Fujimoto, Masatoshi Morii, Kotomi Sasaki, Mitsunori Miyashita, and Masao Suzuki. "Current home palliative care for terminally ill cancer patients in Japan." Palliative Care Research 10, no. 1 (2015): 153–61. http://dx.doi.org/10.2512/jspm.10.153.

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12

Tang, Siew Tzuh. "Determinants of Hospice Home Care Use Among Terminally Ill Cancer Patients." Nursing Research 52, no. 4 (July 2003): 217–25. http://dx.doi.org/10.1097/00006199-200307000-00003.

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13

Policzer, J., B. Kinzbrunner, and D. Tanis. "Seasonal mortality in terminally ill cancer patients." Journal of Clinical Oncology 27, no. 15_suppl (May 20, 2009): 6575. http://dx.doi.org/10.1200/jco.2009.27.15_suppl.6575.

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6575 Background: There is ample evidence that the death rate in elderly patients increases in winter months. The increase in deaths may be amplified in terminally ill patients where place of care home, hospital, or long-term care facility might play a significant role in seasonal mortality. In this paper, we compare seasonal variation in death rates for terminally ill cancer patients to terminally ill patients who are “frail,” i.e., those with neurodegenerative disease, general debility, or chronic heart failure. Methods: We reviewed monthly deaths for Medicare patients age 65 or older with terminal cancer or “frail” patients who were admitted to one of 45 hospice programs and died on service between January 2004 and November 2008. The 72,066 records were analyzed using a three-way analysis of variance (season, place of care, diagnosis) with Bonferroni correction for post-hoc comparisons. Results: Compared to frail patients who died during June, July, and August, the number of deaths of frail patients increased an average of 20% in January, February, and March. This near-sinusoidal pattern was remarkably consistent over a five year period. The effect was most pronounced in patients in nursing facilities, followed by those in hospital, and then by patients receiving home care (all p < 0.005). For cancer patients, this seasonal variation was not observed in any place of care (all p > 0.05). Conclusions: Although frail patients generally have a longer length of stay in hospice than cancer patients hence allowing more opportunity for exposure to infection a number of other factors may serve to insulate cancer patients from seasonal effects. These include a smaller “symptom burden” than frail patients, who frequently have comorbid disease(s) and who are often unable to make their needs known; less compromised immune systems; more aggressive medical treatment; better nutrition; a strong support system (particularly from family and caregivers); and increased sensitivity to factors that may prolong survival, e.g., timely immunizations and even the avoidance of crowds in winter months. No significant financial relationships to disclose.

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TANG, SIEW TZUH, RUTH MCCORKLE, and ELIZABETH H. BRADLEY ph.d. "Determinants of death in an inpatient hospice for terminally ill cancer patients." Palliative and Supportive Care 2, no. 4 (December 2004): 361–70. http://dx.doi.org/10.1017/s1478951504040489.

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Objective:Despite the strong emphasis on home-based end-of-life care in the United States and the recognition of dying at home as a gold standard of quality of care, hospice home care is not a panacea and death at home may not be feasible for every terminally ill cancer patient. Admission to an inpatient hospice and dying there may become a necessary and appropriate solution to distressing patients or exhausted families. However, the factors associated with death in an inpatient hospice have not been examined in previous studies.Methods:A prospective cohort study was conducted to investigate the determinants of death in an inpatient hospice for terminally ill cancer patients. Approximately two-fifths (40.8%) of the 180 terminally ill cancer patients in this study died in inpatient hospices over the 3-year study period.Results:Results from Cox proportional hazards model with adjustment for covariates revealed several factors that were significantly associated with dying in inpatient hospice, as opposed to home, in a nursing home, or in the hospital. Patients were more likely to die in an inpatient hospice if they received hospice care before death (hazard ratio [HR] = 7.32, 95% confidence interval [CI]: 3.21–16.67), if they had a prestated preference to die in an inpatient hospice (HR = 4.86, 95% CI: 2.24–10.51), if they resided in New Haven County (HR = 1.70, 95% CI: 1.00–2.93), or if they experienced higher levels of functional dependency (HR = 1.05, 95% CI: 1.02–1.08).Significance of results:The high prevalence of inpatient hospice deaths for terminally ill cancer patients in this study was related to the local health care system characteristics, health care needs at the end of life, and personal preference of place of death. Findings from this study may shed light on future directions for developing end-of-life care tailored to the needs of cancer patients who are admitted to hospices and eventually die there.

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Jenko, Mimi, Leah Gonzalez, and Mary Jane Seymour. "Life Review With the Terminally Ill." Journal of Hospice & Palliative Nursing 9, no. 3 (May 2007): 159–67. http://dx.doi.org/10.1097/01.njh.0000269995.98377.4d.

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&NA;. "Life Review With the Terminally Ill." Journal of Hospice & Palliative Nursing 9, no. 3 (May 2007): 168–69. http://dx.doi.org/10.1097/01.njh.0000270002.74614.10.

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Owens, Darrell A. "Depression and the Terminally Ill Patient." Journal of Hospice & Palliative Nursing 6, no. 3 (July 2004): 148–49. http://dx.doi.org/10.1097/00129191-200407000-00005.

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18

Parker, Deborah, Carol Grbich, and Ian Maddocks. "Financial Issues in Caring for Someone with Terminal Cancer at Home." Australian Journal of Primary Health 7, no. 2 (2001): 37. http://dx.doi.org/10.1071/py01032.

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For the majority of patients with terminal cancer their preferred place of death is at home. Many factors determine this choice, in particular the availability of a carer, the patient's physical condition and adequate services. A factor often underestimated is the financial impact of caring for someone at home. This paper examines the financial concerns of carers of terminally ill cancer patients and whether current Australian health care policy is able to address these concerns. Two main categories of cost were identified, those related to the patients physical care needs and those that impacted on carer lifestyle. The current government allowances to assist carers in these costs are limited by carers either being unaware that the benefits existed or by the strict qualifying criteria that restrict access to those who care for the terminally ill.

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Tamir, Oren, Yoram Singer, and Pesach Shvartzman. "Taking care of terminally-ill patients at home — the economic perspective revisited." Palliative Medicine 21, no. 6 (September 2007): 537–41. http://dx.doi.org/10.1177/0269216307080822.

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20

Maltoni, Marco, Claudio Travaglini, Matteo Santi, Oriana Nanni, Emanuela Scarpi, Simonetta Benvenuti, Livia Albertazzi, et al. "Evaluation of the cost of home care for terminally ill cancer patients." Supportive Care in Cancer 5, no. 5 (September 1997): 396–401. http://dx.doi.org/10.1007/s005200050098.

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21

Street, Annette, Jeanine Blackford, Anne Turley, and Judy Kelso. "Issues for General Practitioners Caring for Dying Patients in the Home." Australian Journal of Primary Health 5, no. 2 (1999): 9. http://dx.doi.org/10.1071/py99015.

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General practitioners have a central role in the provision of quality health care to the terminally ill patient and family in their own homes. Staff from the Department of Human Services were concerned that GPs were experiencing stress through their increasing role in the provision of palliative care and that there was a need for a fee-for-service stress counselling program for them. A small qualitative study was conducted to verify this perceived need. Semi-structured telephone interviews were conducted with 50 GPs selected from a sample of metropolitan attendees at postgraduate educational activities or doctors known to palliative care services. GPs faced a number of issues in their care for terminally ill people in the community but a fee-for-service counselling program was deemed unnecessary. Evidence from the study confirmed that effective communication strategies between GPs, palliative care services and acute hospitals, an interdisciplinary team approach, and improved understanding between health professionals would enhance the quality of care for dying people and their caregivers.

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Labus, Janet G., and Faye H. Dambrot. "A Comparative Study of Terminally Ill Hospice and Hospital Patients." OMEGA - Journal of Death and Dying 16, no. 3 (May 1986): 225–32. http://dx.doi.org/10.2190/bqwl-b4y8-e1yx-4a12.

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This study investigated differences between twenty-eight hospice and twenty-eight hospital patients who died within a specified time period in one county of Northeastern Ohio. The comparison found that hospice patients were younger, had more people living in the home, and had a shorter disease history. Age, the number of people living in the home, and primary cancer site significantly discriminated between the hospice and hospital patients and predicted group membership with a 76.8 percent overall accuracy rate.

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Stephany, Theresa M. "Nutrition for the Terminally Ill." Home Healthcare Nurse: The Journal for the Home Care and Hospice Professional 9, no. 3 (May 1991): 48–49. http://dx.doi.org/10.1097/00004045-199105000-00017.

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O’Neill, Joseph, Mohammad Akhter, and Lucie Poliquin. "Terminally Ill Offenders: An International Dialogue." Journal of Correctional Health Care 9, no. 2 (July 1, 2002): 119–24. http://dx.doi.org/10.1177/107834580200900203.

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Cowart, Marie E., and Patty J. Simmons. "Nursing of the Terminally Ill (Book)." Journal of Community Health Nursing 5, no. 1 (March 1988): 79–81. http://dx.doi.org/10.1207/s15327655jchn0501_9.

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Lindley, Lisa C. "Healthcare Reform and Concurrent Curative Care for Terminally Ill Children." Journal of Hospice & Palliative Nursing 13, no. 2 (March 2011): 81–88. http://dx.doi.org/10.1097/njh.0b013e318202e308.

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Tucker, K. "End-of-life care: Empowering cancer patients with information and choices." Journal of Clinical Oncology 27, no. 15_suppl (May 20, 2009): e20739-e20739. http://dx.doi.org/10.1200/jco.2009.27.15_suppl.e20739.

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e20739 Background: Terminally ill patients want information and choices, including aid in dying, as they confront death due to cancer and other terminal illnesses. Physicians treating such patients want to feel safe in having candid conversations with patients about their wishes and to provide aid in dying when appropriate. Methods: Review the law governing end of life decision making, including aid in dying. Review the data from Oregon, which has more than 10 years experience with a regulated practice. Review what has been learned in OR, and how that is transferring to other states making aid in dying an end of life option. Results: Oregon's experience shows that when aid in dying is a legal option for mentally competent terminally ill patients overall end of life care improves. Conversations between physicians and patients are more open and candid; Referrals to hospice increase and occur earlier; clinician enrollment in CE for pain and symptom management increase; rx of strong pain medication increase; more patients die at home; patients are comforted to have aid in dying as an option; there is no negative impact on the practice of medicine. Conclusions: Terminally ill patients should be able to recieve comprehensive counseling about all end of life options. There is a growing trend of support for expanding end of life options to include aid in dying for mentally competent terminally ill patients who find themselves trapped in an unbearable dying process. No significant financial relationships to disclose.

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Friedrichsen, Maria, Ann Lindholm, and Anna Milberg. "Experiences of truth disclosure in terminally ill cancer patients in palliative home care." Palliative and Supportive Care 9, no. 2 (May 4, 2011): 173–80. http://dx.doi.org/10.1017/s1478951511000046.

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AbstractObjective:The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.Method:We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.Results:Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.Significance of results:Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

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Brooks, Charles H. "A Comparative Analysis of Medicare Home Care Cost Savings for the Terminally Ill." Home Health Care Services Quarterly 10, no. 1-2 (October 13, 1989): 79–96. http://dx.doi.org/10.1300/j027v10n01_07.

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Raunkiær, Mette. "Villains and victims: Normative settings in the home care of the terminally ill." Mortality 14, no. 4 (October 30, 2009): 325–37. http://dx.doi.org/10.1080/13576270903223713.

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Sivell, Stephanie, Hayley Prout, Noreen Hopewell-Kelly, Jessica Baillie, Anthony Byrne, Michelle Edwards, Emily Harrop, Simon Noble, Catherine Sampson, and Annmarie Nelson. "Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper." BMJ Supportive & Palliative Care 9, no. 1 (December 8, 2015): e14-e14. http://dx.doi.org/10.1136/bmjspcare-2015-000892.

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ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

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Kemp, Charles, a. Bruer, t. Pruvos, r. Schoelle, o. Montej, and e. Watanab. "Proctolysis for hydration of terminally ill cancer patients." Journal of Hospice & Palliative Nursing 1, no. 1 (January 1999): 31???34. http://dx.doi.org/10.1097/00129191-199901000-00006.

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Luijkx, Katrien G., and Jos M. G. A. Schols. "Volunteers in Palliative Care Make A Difference." Journal of Palliative Care 25, no. 1 (March 2009): 30–39. http://dx.doi.org/10.1177/082585970902500104.

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Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. In four sequential studies, information was gathered from focus groups (n=22), a survey (n=237), individual interviews (n=6), and an Internet panel (n=1,712). The focus groups revealed that volunteers can make the last phase of life less stressful for family caregivers by offering practical and emotional support, and this was confirmed by the survey; however, one improvement is needed: every volunteer support should be concluded with a closing contact. The individual interviews showed that in the end-of-life stage the crucial decision is whether the patient can remain at home, not whether the caregiver needs volunteer support; and in such extreme situations, it is understood that volunteer support must involve more than one volunteer. The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.

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Capra, S., L. Montanan, C. Assirelli, V. Salemo, M. R. A. Gentili, G. M. Turolla, M. Bacchilega, K. Sanderson, A. Piancastelli, and G. Cruciani. "Palliative home care unit (PHCU). Project of care of terminally ill cancer patients in their homes." European Journal of Cancer 33 (September 1997): S304. http://dx.doi.org/10.1016/s0959-8049(97)86277-6.

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35

Doolittle, G. C., A. Yaezel, F. Otto, and C. Clemens. "Hospice care using home-based telemedicine systems." Journal of Telemedicine and Telecare 4, no. 1_suppl (March 1998): 58–59. http://dx.doi.org/10.1258/1357633981931470.

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A pilot study of telenursing for terminally ill patients at home was launched as a collaborative effort between KUMC and the Kendallwood Hospice. The service used the public telephone network. Interactive video equipment was installed in the homes of three nurses who received after-hours calls and in the homes of six hospice patients living in either Kansas or Missouri. Data concerning the utilization patterns were gathered for two separate three-month periods. Patients and caregivers reported general satisfaction with the telehospice system. Both the nurses and social worker providers became comfortable about video-calls. Nurses conducted video-assessments to determine whether an ‘in person’ visit was necessary. This was particularly helpful for rural patients who were living a long way from the base station. In addition, Kendallwood serves an urban population and, in certain areas, night-time nursing visits raise safety concerns.

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KELLY, B., P. BURNETT, D. PELUSI, S. BADGER, F. VARGHESE, and M. ROBERTSON. "Factors associated with the wish to hasten death: a study of patients with terminal illness." Psychological Medicine 33, no. 1 (December 23, 2002): 75–81. http://dx.doi.org/10.1017/s0033291702006827.

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Background. There is considerable debate regarding the clinical issues surrounding the wish to hasten death (WTHD) in the terminally ill. The clinical factors contributing to the WTHD need further investigation among the terminally ill in order to enhance understanding of the clinical assessment and treatment needs that underlie this problem. A more detailed understanding may assist with the development of appropriate therapeutic interventions.Method. A sample of terminally ill cancer patients (N=256) recruited from an in-patient hospice unit, home palliative care service and a general hospital palliative care consulting service from Brisbane Australia between 1998–2001 completed a questionnaire assessing psychological (depression and anxiety), social (family relationship, social support, level of burden on others) and the impact of physical symptoms. The association between these factors and the WTHD was investigated.Results. A high WTHD was reported by 14% of patients. A discriminant function analysis revealed that the following variables were associated with a high WTHD (P<0·001): higher levels of depressive symptoms, being admitted to an in-patient hospice setting, a greater perception of being a burden on others, lower family cohesion, lower levels of social support, higher levels of anxiety and greater impact of physical symptoms.Conclusions. Psychological and social factors are related to a WTHD among terminally ill cancer patients. Greater attention needs to be paid to the assessment of psychological and social issues in order to provide appropriate therapeutic interventions for terminally ill patients.

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Harris, Clare, Juliet Spiller, and Anne Finucane. "Managing delirium in terminally ill patients: perspective of palliative care nurse specialists." British Journal of Community Nursing 25, no. 7 (July 2, 2020): 346–52. http://dx.doi.org/10.12968/bjcn.2020.25.7.346.

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Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.

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Lee, Hsin-Tzu Sophie, Kath M. Melia, Chien-An Yao, Chun-Ju Lin, Tai-Yuan Chiu, and Wen-Yu Hu. "Providing Hospice Home Care to the Terminally Ill Elderly People With Cancer in Taiwan." American Journal of Hospice and Palliative Medicine® 31, no. 6 (August 5, 2013): 628–35. http://dx.doi.org/10.1177/1049909113499603.

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Charbonneau, Cécile, and Bruno Bélanger. "Identification of Spiritual and Religious Needs of Terminally Ill Patients Receiving Palliative Home-care." Journal for the Study of Spirituality 3, no. 1 (May 2013): 33–45. http://dx.doi.org/10.1179/2044024313z.0000000003.

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Hashimoto, Kotaro, Muneo Tanaka, Suguru Kanno, Junko Yano, Yoshie Iwabuchi, Takumi Suda, Keiko Ikeda, Yoshiaki Tanaka, Junichi Tanaka, and Masao Suzuki. "Current State of Critical Hemorrhage during Home Palliative Care for Terminally Ill Cancer Patients." Palliative Care Research 11, no. 1 (2016): 506–9. http://dx.doi.org/10.2512/jspm.11.506.

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Shimada, Naoki, Hiroto Ishiki, Satoru Iwase, Tsukuru Chiba, Noriko Fujiwara, Aya Watanabe, Junya Kinkawa, Masanori Nojima, Arinobu Tojo, and Kohzoh Imai. "Cancer Transitional Care for Terminally Ill Cancer Patients Can Reduce the Number of Emergency Admissions and Emergency Department Visits." American Journal of Hospice and Palliative Medicine® 34, no. 9 (July 13, 2016): 831–37. http://dx.doi.org/10.1177/1049909116658641.

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Background: Emergency admissions and emergency department visits (EAs/EDVs) have been used as quality indicators of home care in terminally ill cancer patients. We established a cancer transitional care (CTC) program to monitor and manage terminally ill cancer patients receiving care at home. The purpose of this study was to evaluate the effectiveness of CTC by the frequency of EAs/EDVs. Methods: In a retrospective chart review, we identified 133 patients with cancer admitted to our department, of whom 56 met study eligibility criteria. The CTC consisted of at least 1 or more following components: (1) a 24-hour hotline for general physicians or home care nurses to reach hospital-based physicians, (2) periodic phone calls from an expert hospital-based oncology nurse to home care medical staff, and (3) reports sent to our department from home care medical staff. The primary outcome variable was the frequency of EAs/EDVs. Results: There were 32 EAs/EDVs and 69 planned admissions during the observation period. In the last 30 days of life, 16 patients (28.6%) had 1 EA/EDV and none had multiple EAs/EDVs. Compared with previous studies, our study found a similar or lower frequency of EAs/EDVs. Conclusion: Our findings suggest that the implementation of CTC reduces the number of EAs/EDVs by replacing them with planned admissions. Further prospective studies to evaluate CTC are warranted.

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&NA;. "Hospice Care of America Partners With County Jail to Care for Terminally Ill Inmate." Journal of Hospice & Palliative Nursing 10, no. 5 (September 2008): 258–59. http://dx.doi.org/10.1097/01.njh.0000319168.66090.19.

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Vegunta, Radha Krishna Rao, Brandon Jamal Blue, Hermina Deepika Fernandes, Satya Upadhyayula, Patricia Burhanna, Miriam B. Rodin, and Nishant Poddar. "Impact of an inpatient palliative consultation in terminally ill cancer patients." Journal of Clinical Oncology 34, no. 3_suppl (January 20, 2016): 77. http://dx.doi.org/10.1200/jco.2016.34.3_suppl.77.

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77 Background: Terminally ill cancer patients have complex medical and psychosocial needs at the end of life. Given these complexities, limited data is available to suggest the appropriate timing of palliative care involvement in the treatment of cancer. Our study aims to describe the referral patterns of inpatient palliative care consultations in advanced cancer patients in a tertiary care center. Methods: A retrospective review was performed. Inpatient palliative consultation was obtained in cancer patients from January 1, 2014 to December 31, 2014. Descriptive statistics are used in data analysis. Results: Inpatient palliative care consults (IPCC) were obtained for 245 cancer patients admitted to Saint Louis University Hospital. Of the 245, 130 were male (53.06%), 115 were female (46.93%), 128 were White (52.24%), and 114 were Black (46.53%). Newly diagnosed patients with cancer during the current admission were 79(32.24%). 57 (23.26%) patients were admitted to the Intensive care unit during hospitalization. A total of 39(15.91%) patients died in the hospital; among those who died in the hospital 34 had ICU stay during the hospitalization or died in the ICU (87%). Malignancies most common were lung 71(28.97%) followed by pancreatic-biliary 33(13.4%), lymphoma and leukemia 22(8.9%), hepatocellular carcinoma 18(7.34%), head and neck 16 (6.5%), and upper GI 16 (6.5%). Disposition at discharge included home hospice 67 (28.3%), hospice in facility 27(11%), home without hospice 71(28.9%), facility without hospice 39(15.9%). Conclusions: According to the National Hospice and Palliative Care Organization as of 2013, 7.0% hospice patients die in acute care hospitals. Our data shows 15.9% who received IPCC died in the hospital with 87% dying in ICU. This is likely due to delays in the initiation of palliative care consultation as outpatient leading to increase strain on tertiary referral centers. In another study 22% of eligible Black patients received IPCC. Our rate of IPCC in Blacks was 46.5%. This highlights the disparity in access to outpatient palliative care in this population. Future efforts should be made to promote early outpatient palliative services to reduce ICU admissions, hospital re-admissions and healthcare costs.

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Jablonski, Kevin, and Gloria Duke. "Pain Management in Persons Who Are Terminally Ill in Rural Acute Care." Journal of Hospice & Palliative Nursing 14, no. 8 (December 2012): 533–40. http://dx.doi.org/10.1097/njh.0b013e31825c7b50.

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Tark, Aluem, Leah V. Estrada, Mary E. Tresgallo, Denise D. Quigley, Patricia W. Stone, and Mansi Agarwal. "Palliative care and infection management at end of life in nursing homes: A descriptive survey." Palliative Medicine 34, no. 5 (March 10, 2020): 580–88. http://dx.doi.org/10.1177/0269216320902672.

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Background: Infections are common occurrences at end of life that are associated with high rates of morbidity and mortality among frail elderly individuals. The problem of infections in nursing homes has led to a subsequent overuse and misuse of antibiotics in this already-frail population. Improving palliative care in nursing homes has been proposed as a key strategy to reduce the use of antibiotics. Aim: The aim of this study was to describe the current status of how nursing homes integrates palliative care and infection management at end of life across the nation. Design: This is a cross-sectional survey of nationally representative US nursing homes. Setting/participants: Between November 2017 and October 2018, a survey was conducted with a nationally representative random sample of nursing homes and 892 surveys were completed (49% response rate). The weighted study sample represented 15,381 nursing homes across the nation. Results: Most nursing homes engaged in care plan documentation on what is important to residents (90.43%) and discussed spiritual needs of terminally ill residents (89.50%). In the event of aspiration pneumonia in terminally ill residents, 59.43% of nursing homes responded that resident would be transferred to the hospital. In suspected urinary tract infection among terminally ill residents, 66.62% of nursing homes responded that the resident will be treated with antibiotics. Conclusion: The study found wide variations in nursing home palliative care practices, particularly for timing of end-of-life care discussions, and suboptimal care reported for antibiotic usage. Further education for nursing home staff on appropriate antibiotic usage and best practices to integrate infection management in palliative care at the end of life is needed.

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Nakajima, Maria Michiko, Shuhei James Nakajima, Noboru Horikoshi, Akihiro Isogawa, Yurin Kondo, Go Nakajima, Nobuhiro Takeshita, et al. "When is the best time to transfer terminally ill cancer patients from hospitals to palliative hospice home care? Analysis of a questionnaire survey of 1,055 surviving families." Journal of Clinical Oncology 36, no. 34_suppl (December 1, 2018): 61. http://dx.doi.org/10.1200/jco.2018.36.34_suppl.61.

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61 Background: It is difficult to know when the best timing is to transfer terminally ill cancer patients from hospitals to palliative hospice home care for their quality of life to death. This study aimed to articulate the best time for medical teams working in hospitals to refer their terminally ill cancer patients to palliative home care. Methods: A statistical analysis of a survey was conducted with 1,055 surviving families whose members had died with palliative home care from 1995 to 2014. The questionnaire included the following 8 contents: 1. transfer timing from hospitalization to the home care; A. appropriate, B. too late, C. too early; and the contextual items ware, 2. peacefulness of patient at dying, 3. peacefulness of patient all through the care, 4. physical pain, 5. mental pain, 6. spiritual pain, 7. alleviation of family sufferings, 8. satisfaction of family as care-givers. The response rate is 31% (311 persons). However, we excluded responses without names on the questionnaire, of non-cancer patients, with death location out of home, and without answer to question 1, resulting in 166 responses for analysis. Results: Focusing on the question 1, number of responders are A; 113 (68%), B; 52 (31%), C; 1 (0.6%). The medians of home care days to death are A; 66, B; 23, C; analysis impossible. Comparison of respondents’ satisfaction according to number of days of palliative home care revealed that 89.4% people with two months or more before their patients’ death were satisfied (A), while 10.6% of those who had less than two month were unsatisfied (B+C). Conclusions: Most surviving families were satisfied if they had two months or more for palliative home care. This survey suggests the relevancy to start preparation for discharge that enables the patients to stay home with their family members for two months or more. [Table: see text]

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Kinoshita, Hiroya, Isseki Maeda, Tatsuya Morita, Mitsunori Miyashita, Akemi Yamagishi, Yutaka Shirahige, Toru Takebayashi, Takuhiro Yamaguchi, Ayumi Igarashi, and Kenji Eguchi. "Place of Death and the Differences in Patient Quality of Death and Dying and Caregiver Burden." Journal of Clinical Oncology 33, no. 4 (February 1, 2015): 357–63. http://dx.doi.org/10.1200/jco.2014.55.7355.

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Purpose To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families. Methods Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory. Results Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the size of the difference between home and hospital was moderate (Hedges' g, 0.45). Home was superior to palliative care units or hospitals with respect to “dying in a favorite place,” “good relationships with medical staff,” “good relationships with family,” and “maintaining hope and pleasure” (P < .001 for all combinations of home v palliative care units and home v hospitals). Home death was significantly associated with a lower overall (P = .03) and financial caregiver burden (P = .004) relative to hospital death. Conclusion Dying at home may contribute to achieving good death in terminally ill patients with cancer without causing remarkably increased caregiver burden. Place of death should be regarded as an essential goal in end-of-life care.

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Economos, Guillaume, Francoise Tholly, Wadih Rhondali, Murielle Ruer, Colombe Tricou, Audrey Fawoubo, Élise Perceau-Chambard, and Marilene Filbet. "Nursing home hospital transfers in the terminally ill: night shift nurses matter!" BMJ Supportive & Palliative Care 10, no. 2 (September 17, 2019): 228–33. http://dx.doi.org/10.1136/bmjspcare-2019-001832.

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BackgroundFrench demographic projection expects an increasing number of older, dependent patients in the next few years. A large proportion of this population lives in nursing homes and their transfer to hospitals at the end of life is an ongoing issue.ObjectiveThis study explored the factors influencing the transfer of patients living in nursing homes to hospital at the end of life.DesignWe used a mixed-methods questionnaire developed by an expert group and assessing different characteristics of the nursing homes.ParticipantsAll the nursing homes in the Rhône-Alpes area (n=680) were surveyed.ResultsWe obtained 466 (68%) answers. We found that a palliative care programme was present in 336 (72%) nursing homes. The majority had a coordinating physician 428 (82%) and a mean number of 6 nurses for 83 beds, with 83 (18%) having a night shift nurse. There was a mean number of 19 deaths per nursing home during the recorded year. The main cause of death was dementia (41%), cancer-related death (13%). Death occurred mostly in the nursing home (14 74%). Night shift nurse attendance was significantly associated with the place of death: 27 deaths occurred in nursing homes with a night shift nurse versus 12 in those without one (p<0001).ConclusionsThe location of the death of frail elderly patients is a major health issue that needs to be addressed. Our results suggests that the presence of a night shift nurse decreases the number of emergency transfers and deaths in the hospital.

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Garcia, Xiomara, Elizabeth Frazier, Janie Kane, Amber Jones, Carrie Brown, Tonja Bryant, and Parthak Prodhan. "Pediatric Cardiac Critical Care Transport and Palliative Care: A Case Series." American Journal of Hospice and Palliative Medicine® 38, no. 1 (May 28, 2020): 94–97. http://dx.doi.org/10.1177/1049909120928280.

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Objective: To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. Design: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes. Interventions: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes. Conclusions: Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.

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Beck-Friis, Barbro, and Peter Strang. "The Family in Hospital-Based Home Care with Special Reference to Terminally Ill Cancer Patients." Journal of Palliative Care 9, no. 1 (March 1993): 5–13. http://dx.doi.org/10.1177/082585979300900102.

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Eighty-seven next of kin, 80 spouses and seven adult children, were the primary caregivers of terminally ill patients (87% cancer patients) cared for at the hospital-based home care (HBHC) unit of Motala Hospital during 1989–1990. All of the patients died in their homes. Next of kin were asked to complete self-questionnaires and to give written comments on their experiences and their perception of how the patient had felt about 13 aspects of home care provided by the HBHC staff. The response rate was 94%. In nine out of 13 areas, such as adequate information at the time of referral about the HBHC, security, support, immediate extra help when needed, high quality of nursing, and care and pain control, 86%–97% of next of kin were very satisfied (7–9 on a 9-point scale); whereas information provided about the disease, economic support, and support given after death were very satisfactory according to 72%, 58%, and 80% of relatives, respectively. Gender and time from diagnosis to death did not seem to affect responses. Next of kin of cancer patients were generally more satisfied than next of kin of other terminally ill patients. A total time of care of more than 60 days (median time) was associated with significantly more positive responses. Older spouses were significantly more satisfied with the HBHC than younger ones; despite this, 99% of all next of kin would choose HBHC again in a similar situation. It is concluded that very satisfactory terminal home care can be achieved, but it presupposes effective, prompt support and symptom control, 24 hours per day, and that both patient and family wish to participate in the HBHC.

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