Life care plans: Accuracy over time

2001 ◽  
Vol 12 (3) ◽  
pp. 85-87 ◽  
Author(s):  
Patricia McCollom ◽  
Rebecca Crane
Keyword(s):  
2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.


2020 ◽  
Vol 29 (4) ◽  
pp. e81-e91
Author(s):  
Renea L. Beckstrand ◽  
Jasmine B. Jenkins ◽  
Karlen E. Luthy ◽  
Janelle L. B. Macintosh

Background Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined. Objective To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time. Methods In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999. Results Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient’s end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design. Conclusions The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.


2016 ◽  
Vol 74 (3) ◽  
pp. 329-344 ◽  
Author(s):  
Sara Sanders ◽  
Erin L. Robinson

Advance care planning (ACP) is a critical part of long-term health-care planning, as no one knows when the ability to make personal medical decisions may be impaired. Many assume ACP is only necessary for older adults or those with life-threatening health conditions; however, there are growing discussions about healthy, young adults also engaging in ACP, as they too suffer from unexpected medical events that limit their ability to make medical decisions. The current study examined the reactions of college students following the completion of their advance care plans and then sharing these plans with friends and family. The students reported that while completing their advance care plans created many emotions, they found the experience to be valuable and facilitated conversations with family and friends about end-of-life care that may not have occurred otherwise.


2017 ◽  
Vol 9 (1) ◽  
pp. e9-e9
Author(s):  
Andy Hiscock ◽  
Stephen Barclay

ObjectiveLife-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases.MethodsSemistructured interviews with a maximum variety sample of nine professionals involved in the care of young people with life-limiting neuromuscular diseases in one region of the UK.ResultsWhile recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.ConclusionsCommunity-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.


Telehealth services have grown exponentially in 2020. Both the government and more than 275 technology companies have made significant investments in this new industry. The Trump Administration has streamlined the process to benefit 13.7 million Medicare Advantage enrollees. Amwell, the leading telemedicine company in the United States received a $100 million investment from Google, plus $100 million towards a pilot program from the FCC. Attorneys will be affected because any life care plan attributes the largest expense to the hiring of a Licensed Practical Nurse (LPN), and their services are being impacted by telehealth technology in the last five years. Thanks to telehealth technology, nurses can work remotely, and this may lower the cost of support care mentioned in the life care plans that attorneys use.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Malin Eneslätt ◽  
Gert Helgesson ◽  
Carol Tishelman

Abstract Background End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults’ prioritizations and reasoning about values and preferences for future end-of-life care change over time. Methods Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5–12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants’ reasoning about card choices were explored with longitudinal qualitative analysis. Results Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants’ health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. Conclusions Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals’ end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.


2021 ◽  
Vol 10 (4) ◽  
pp. e001520
Author(s):  
Toni Wolff ◽  
Caroline Dorsett ◽  
Alexander Connolly ◽  
Nicola Kelly ◽  
Jennifer Turnbull ◽  
...  

In response to there being no specialist paediatric palliative care (PPC) team in a region of England, we undertook a 12-month quality improvement project (funded by National Health Service England’s Marginal Rate Emergency Threshold and Readmission fund) to improve children’s end-of-life care.Improvements were implemented during two plan–do–study–act (PDSA) cycles and included specialist experts, clinical champions, focused education and training, and tools and materials to support identification, care planning and communication. A lead paediatrician with expertise in PPC (10 hours/week) led the project, supported by a PPC nurse (3 days/week) and a network administrator (2 days/week).Children who died an expected death were identified from the child death review teams. Numbers of non-elective hospital admissions, bed days, and costs were identified.Twenty-nine children died an expected death during the 12 months of the project and coincidentally 29 children died an expected death during the previous 12 months. The median number of non-elective admissions in the last 12 months of life was reduced from two per child to one. There was a reduction in specialist hospital (14%) and district general hospital (38%) bed days. The percentage of children who died an expected death who had anticipatory care plans rose from 50% to 72%.The results indicate that a network of clinicians with expertise in PPC working together across a region can improve personalised care planning and reduce admissions and bed days for children in their last year-of-life with reduced bed utilisation costs.


2021 ◽  
Vol 9 ◽  
Author(s):  
Nazira R. Muhamedjonova ◽  
Jonathan Watkins ◽  
Sayora I. Nazarova ◽  
P. A. Holding

Background: This article describes the integration of an innovative network-mapping tool within a monitoring, evaluation and learning system. We describe how it serves to strengthen vulnerable families to care for their children. We discuss the use of this tool as part of the process of measurement for change in the preparation for the sustainable scaling of programme implementation. Tajikistan has a legacy of Soviet-style institutional care of children. Traditionally, very young children separated from their families have been cared for in institutional baby homes. This research is part of a wider project to transform these baby homes into community-oriented Family and Child Support Centres.Methods: We mapped the networks of child support experienced by parents and service providers. We used interactive, semi-structured interviews, and the tool evolved through an iterative process. We generated data to describe the connexions between children, families, professionals and supporting organisations. The resulting information revealed strengths and weaknesses in support provided, attitudes and perceptions towards the quality of the support as well as identifying processes through which changes strengthening the system can be stimulated.Results: The data showed that the main support for children comes from within their immediate household, but, over time, more distal support gained value. Variation in the networks of support related to gender, specific subgroups of need and location. Gender was the most influential determinant of patterns of support. Mothers' knowledge of service provision, represented by a greater number and variety of contacts on their network-maps, was more diverse than fathers'. In contrast, fathers' more limited networks showed connexions to individuals and organisations with potentially more powerful decision-making roles. Participation in the discussions around the network-mapping contributed towards a change in the use of data and evidence in the implementation team.Conclusions: Network-mapping is a valuable and adaptable tool that feeds into monitoring and evaluation at multiple levels. The process reveals the nature and extent of relationships of support for childcare and protection. It exposes the changes in these networks over time. Both the information provided and the process of collection can enrich care plans, create links within the network and inform decision-making that improves efficacy of delivery as we move to scale.


2021 ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Diaz ◽  
Fritz Gempeler ◽  
...  

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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