Difficult conversations with terminal patients: Palliative care and death at home.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9038-9038 ◽  
Author(s):  
Eduardo L. Morgenfeld ◽  
Gaston Martin Reinas ◽  
Daniela Gercovich ◽  
Ernesto Gil Deza ◽  
Edgardo G. J. Rivarola ◽  
...  

9038 Background: More than half the total number of oncological patients may die due to the disease’s progression, and at some point in time the oncologist must communicate that the disease is terminal. This is the hardest conversation (HC) of a clinical oncologist. The following paper’s objective is to determine whether or not the treatments applied to patients, and their evolution, are affected by having had the HC. Methods: All patients who died due to progression of the disease in 2011 were selected for this study. Both medical histories and applied treatments were evaluated. All doctors were interviewed to establish when the HC had taken place. The distribution of variables was analyzed and both populations compared. Results: Between January 2011 and December 2011, 110 patients who met the previous criteria were studied. Population characteristics: Sex (Female: 52 pts; Male: 58 pts). Median age at the time of death: 61 years (Range: 27-88). Patients were divided in two groups: A (terminal status of the disease had been discussed; 70 pts) and B (terminal status of the disease had not been discussed; 40 pts). Both groups were similar in diagnosis, age and previous treatments. During the post HC evolution, three elements were categorized according to the table below. Conclusions: 1 – The conviction, ethical sense and strength of will of the doctor are determining factors when related to his or her capacity to talk with the patient about the terminal aspect of the disease. 2 – The chemotherapy treatments applied during the last two months of life are similar in both groups. 3 – The percentage of patients that died at their homes under palliative care was remarkably higher amongst those who had been informed than those who had not been informed. [Table: see text]

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 3318-3318
Author(s):  
Judy Foster ◽  
Traci M. Blonquist ◽  
Areej El-Jawahri ◽  
Amir T Fathi ◽  
Philip C. Amrein ◽  
...  

Abstract Background The diagnosis of acute myeloid leukemia (AML) is associated with a poor prognosis, particularly for patients older than age 65 and those with relapsed or refractory disease. Little is known about the specific location where AML patients die and how disease status, therapeutic management, and symptoms influence the place of death. Methods We conducted a retrospective descriptive analysis of consecutive patients with AML who died at our institution between January 2007 and December 2012. In addition to place of death, the variables of interest included: disease status at death, previous transplant, prior chemotherapy, presence of a dedicated caregiver, gender, and age at diagnosis. Disease status was classified as: new diagnosis, active disease, relapsed, or in remission. A new diagnosis was defined as a diagnosis within the prior 30 days. Active disease was defined as disease beyond 30 days and without prior remission. Medical records were reviewed to identify whether palliative care service was consulted, and the range of symptoms reported during the last two weeks of life. Categorical variables were compared among groups using chi-square and continuous variables with the Kruskal Wallis test. Results We identified 166 patients with AML. The majority of study patients were white (90%) and male (55%) with a median age of 69 years (range 21-94 years). Disease was characterized as de novo AML (49%), therapy related (14%), secondary to antecedent myelodysplasia (29%) or other hematologic disease (8%). The median time from diagnosis to death was 5.5 months (range 0.7-50.4). The majority (82%) had active AML at time of death. Other causes of death included transplant related complications (8%), sepsis (4%), bleeding (2%), or other (4%) causes. Palliative care consultation occurred in 35% of the cases. The consults typically were late in the course of illness with the median time from initial consult to time of death of 8 days (range 0-122 days). Information on the location of death was available for 154 patients, of whom, 23 (15%) died in inpatient hospice, 41 (27%) at home, 48 (31%) died while hospitalized in a non-ICU bed and 42 (27%) died in either the Intensive Care Unit or Emergency Department (ED). Location of death was significantly associated with disease status at death (p< 0.0001, Figure 1), prior anthracycline/cytarabine based induction therapy (p=0.01), social support/dedicated caregiver (p=0.05), and age at diagnosis (p<0.0001). Of the patients that died in the ICU/ED, a higher proportion were younger with median age of 61 years (range of 30-83). Of those with a new diagnosis of AML, 36% died in the ICU or in the non-ICU hospital bed (33%) and 30% at home or inpatient hospice. Patients in complete remission mostly died in the ICU or ED (80%) while those with relapsed disease died in a range of settings including at home (33%), hospital (33%), inpatient hospice (20%), or in the ICU/ED (15%). A higher proportion (23%) of those who had not received induction chemotherapy died in inpatient hospice than those who had (9%). Conversely, those that had received induction chemotherapy had a higher proportion of ICU/ED deaths (36%) than those that had not received induction (15%). A higher proportion of those with social support died at home/hospice (30% vs. 5%) and a lower proportion died in inpatient hospice (13% vs. 27%). The most commonly reported symptoms included pain (38%), delirium (29%) and bleeding (23%). The 37 reported bleeding events included oral-nasal cavity bleeding (28%), soft tissue bleeding (5%), large volume pulmonary (8%), gastrointestinal (13%), and intra-cranial hemorrhage (38%). Conclusions The majority of AML patients are in a hospital setting at the time of death. Important factors for the location of death include age at diagnosis, disease status, social support and prior induction chemotherapy. Symptoms at the end of life included pain, delirium and bleeding. Palliative Care was not optimally utilized in the majority of cases. Interventions are needed to improve symptom management and health care utilization at the end of life for patients with AML. Figure 1. Figure 1. Disclosures Fathi: Seattle Genetics: Membership on an entity's Board of Directors or advisory committees, Research Funding; Merck: Membership on an entity's Board of Directors or advisory committees; Agios: Membership on an entity's Board of Directors or advisory committees; Exelexis: Research Funding; Takeda Pharmaceuticals International Co.: Research Funding; Ariad: Consultancy. Attar:Agios: Employment.


2007 ◽  
Vol 5 (4) ◽  
pp. 389-395 ◽  
Author(s):  
Tomomi Sano ◽  
Etsuko Maeyama ◽  
Masako Kawa ◽  
Yuki Shirai ◽  
Mitsunori Miyashita ◽  
...  

ABSTRACTObjectives:The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.Methods:One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).Results:Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.Significance of results:Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.


2020 ◽  
pp. 15-18
Author(s):  
Nina Tishchenko

The article reflects the importance and importance of the work of nurses of the Department of Palliative Care for Oncological Patients of the State Budget Health Establishment «Samara Regional Clinical Oncological Clinic». Important stages and features of care when dealing with seriously ill patients.


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6503-6503
Author(s):  
Carlisle E. W. Topping ◽  
Madeleine Elyze ◽  
Rachel Plotke ◽  
Lauren Heuer ◽  
Charu Vyas ◽  
...  

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.


2008 ◽  
Vol 1 ◽  
pp. PCRT.S1058 ◽  
Author(s):  
Marianne Matzo ◽  
Kamal Hijjazi

Objective This study sought to document Oklahomans knowledge, attitudes, and behaviors regarding palliative care; this paper focuses on subjects stated preferences for where they would choose to die. Design Quantitative study used a random state-wide telephone sample of Oklahoma residents. Subjects Data from 804 residents in the State of Oklahoma between November and December (2005). Results An overwhelming majority of the respondents (80%) reported preference to die at home in the event that they suffer a terminal illness. The proportion of respondents under the age of 65 who preferred to die at home (80.9%) was slightly higher than those aged 65 and over (74.8%). Also, while 81.4% of the female respondents reported preference for dying at home, 75.8% of the male respondents shared such preference (P < 0.05). More married respondents (82.7%) than non-married respondents (74.7%) reported preference for dying at home (P < 0.01). A significant association (P < 0.05) between income level and preference for dying at home was noted. While 84.3% of those with income level at $21,000 or more reported reference for dying at home, 76.4% of those with income below $21,000 reported the same preference. Conclusions This paper offers insight into factors that influence Oklahoman's stated preferences for site of death that can assist the statewide agenda in the planning and provision of palliative care. This information can be adapted in other states or countries to determine palliative care needs.


2018 ◽  
Vol 32 (5) ◽  
pp. 342-351
Author(s):  
Panita Krongyuth ◽  
Pimpan Silpasuwan ◽  
Chukiat Viwatwongkasem ◽  
Cathy Campbell

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.


2015 ◽  
Vol 23 (3) ◽  
pp. 560-567 ◽  
Author(s):  
Maira Deguer Misko ◽  
Maiara Rodrigues dos Santos ◽  
Carolliny Rossi de Faria Ichikawa ◽  
Regina Aparecida Garcia de Lima ◽  
Regina Szylit Bousso

OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family.METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews.RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives.CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.


Author(s):  
Jelle van Gurp ◽  
Jeroen Hasselaar ◽  
Evert van Leeuwen ◽  
Martine van Selm ◽  
Kris Vissers
Keyword(s):  

2018 ◽  
Vol 34 (4) ◽  
pp. 224-231 ◽  
Author(s):  
Roger W. Hunt ◽  
Katina D’Onise ◽  
Anh-Minh Thi Nguyen ◽  
Kamalesh Venugopal

Aims:To describe changes in the place of death of patients with cancer from 1990 to 2012, and to identify issues for their end-of-life care.Materials and Methods:Population-based descriptive study, with analyses of place of death patterns, using the South Australian Cancer Registry records of 86 257 patients with cancer who died from 1990 to 2012.Results:From 1990 to 2012, the proportion of cancer deaths in hospital decreased from 63.4% to 50.9%, and in nursing homes increased from 8.2% to 22.5%. After the year 2000, the proportions in hospices and at home were both below 15%. Multivariate analyses showed that young patients with cancer were more likely to die in a hospice or at home, compared to elderly patients with cancer who were more likely to die in a nursing home; the likelihood of dying in a hospice increased with socioeconomic status; patients with a short survival time or a hematological malignancy were more likely to die in a metropolitan hospital.Conclusions:Compared to most other countries, the proportion of cancer deaths at home was low, and many patients would not have died at their preferred place. The trend for more cancer deaths to occur in nursing homes is likely to continue, but nursing homes generally lack the resources and skilled staff to provide quality palliative care. Models of palliative care delivery should take account of patient preferences, the growth of terminal cancer care in nursing homes, and apparent inequities.


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