Exploring the palliative care needs of Hispanic immigrant mothers with advanced cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 135-135
Author(s):  
Rafael Alonso Saldana ◽  
Eliza Park ◽  
Devon Check ◽  
Katherine Elizabeth Reeder-Hayes ◽  
Deborah Mayer
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Medical Decision Making ◽  
Medical Decision ◽  
Life Care ◽  
Spanish Speaking ◽  
Demographic Group

135 Background: Hispanics are the fastest growing demographic group in the United States and cancer is the leading cause of death in this population. Hispanic immigrants encounter a number of challenges when confronting end-of-life care: geographical and cultural separation from families; language and educational barriers; fear of discrimination; and in the case of undocumented immigrants, fear of deportation. The experiences of Hispanic patients with advanced cancer who are parents of dependent-age children are essentially unknown. Therefore, we used qualitative methods to identify the palliative care and end-of-life needs of this unique population. Methods: We recruited five Spanish-speaking, Hispanic mothers with metastatic cancer to complete a semi-structured interview about their experiences. The interviews addressed coping with advanced illness, sources of distress, parenting changes, medical decision-making strategies, and communication about illness. Data were analyzed using traditional content analysis techniques. Results: Participants were all female, ages 34-43 year old. On average, they had 3.4 children and 8.2 years of education. Common themes were: (1) the financial burden of cancer; (2) low social support for parenting and household responsibilities; (3) lack of perceived role in medical decision-making; (4) and religion as primary source of coping and hope. We also identified several communication barriers in conducting a palliative care study with this population. Conclusions: Future palliative care studies can improve Spanish-speaking Hispanics’ comprehension by incorporating Spanish vocabulary into the interviews and providing greater explanation of concepts such as shared decision-making, cancer staging, palliative care, and hospice. Greater awareness of financial concerns and insufficient social support may help oncology providers and researchers develop interventions to help Hispanic parents with advanced cancer. Further studies are needed to learn more about the unmet needs of end-of-life care for this demographic group.

scholarly journals Palliative Care Clinician Overestimation of Survival in Advanced Cancer: Disparities and Association With End-of-Life Care

2019 ◽  
Vol 57 (2) ◽  
pp. 233-240 ◽  
Author(s):  
Robert Gramling ◽  
Elizabeth Gajary-Coots ◽  
Jenica Cimino ◽  
Kevin Fiscella ◽  
Ronald Epstein ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Cancer Disparities ◽  
Life Care

Incorporating patient preferences and priorities into end-of-life care.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 41-41
Author(s):  
Eric Rackow ◽  
Afua Ofori ◽  
Wendy Rodkey ◽  
Roy A. Beveridge
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
End Of Life Care ◽  
Medical Decision Making ◽  
Case Managers ◽  
Readiness For Change ◽  
Medical Decision ◽  
Decision Making Process ◽  
Life Care

41 Background: Patients with advanced illness often face painful conversations and difficult decisions. A program was deployed to help patients identify, communicate, and incorporate their personal preferences and priorities into decisions about their care. The program was assessed by measuring movement along the readiness for change continuum. Methods: Patients residing in the home and participating in a chronic care program were referred by their case managers based on clinical conditions and whether the patient appeared to be in their last 12 months of life. Counseling sessions with patients or family caregiver/s were designed to move participants toward the following actions: be fully informed about their medical situation, describe their detailed quality of life priorities, articulate a self-defined medical decision making process, effectively communicate to their family and physicians, and implement and repeat the aforementioned steps. After 5 months (Sept-2014 to Feb-2015), movement along the readiness for change continuum (pre-contemplation, contemplation, preparation, action, maintenance, and advocacy) was reported. Results: Of the 427 patients referred, 33 could not be reached, 116 were ineligible, 50 declined or did not engage. Of the 228 participants, 191 (84%) moved at least one step in readiness for change continuum over the 5-month period. In Nov-2014, 13% of participants were in action, maintenance, or advocacy, which increased to 19% by Feb-2015. The largest observed movement to action, maintenance, or advocacy was in defining quality of life priorities: 2% Nov-2014 to 21% Feb-2015. The least movement to action, maintenance, or advocacy was observed in articulating a self-defined medical decision making process: 3% Nov-2014 to 16% Feb-2015. Case managers reported discomfort in referring members based on their assessment of length of life. Early surveys show high levels of satisfaction. Conclusions: A very high percentage of patients progressed in incorporating their preferences and priorities into end of life care as measured by the readiness to change continuum. This program is currently expanding and the referral process is changing from case manager to algorithm based identification referrals.

scholarly journals Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers.

2021 ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Diaz ◽  
Fritz Gempeler ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
End Of Life Decisions ◽  
Care Plans ◽  
Qualitative Descriptive ◽  
Imminent Death

Abstract Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices. Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.

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