scholarly journals Documenting Plans for Care: Advance Care Directives and the 7-Step Pathway in the Acute Care Context

Author(s):  
Gregory Brian Crawford ◽  
Katherine Susan Hodgetts ◽  
Teresa Burgess ◽  
Jaklin Ardath Eliott

Abstract Background Advance care planning (ACP) involves the discussion and documentation of an individual’s values and preferences to guide their future healthcare should they lose capacity to make or communicate treatment decisions. ACP can involve the individual’s completion of an Advance Care Directive (ACD), a legislated and common-law instrument which may include appointment of a substitute decision-maker and binding refusals of treatment. In South Australia, ACDs intersect in the acute-care context with the Resuscitation Plan 7-Step Pathway (7-SP), an integrated care plan written for and by clinicians, designed to organise and improve patients’ end-of-life care through the use of structured documentation. Here, we examine the perspectives of healthcare professionals (HPs) within a hospital setting on the practical integration of ACDs and the 7-SP, exploring the perceived role, function, and value of each as they intersect to guide end-of-life care in an Australian hospital setting. Methods Qualitative data were collected via eight focus groups with a total of 74 HPs (palliative care, acute care, and oncology specialists; medical intern; general and emergency nurses; social workers) across two hospitals. Audio recordings were transcribed and thematically analysed. Results HPs viewed ACDs as a potentially valuable means of promoting patient autonomy, but as rarely completed and poorly integrated into hospital systems. Conversely, the process and documentation of the 7-SP was perceived as providing clarity about clinicians’ responsibilities, and as a well-understood, integrated resource. Participants sometimes exhibited uncertainty around which document takes precedence if both were present. Sometimes, the routinisation of the 7-SP meant it was understood as the ‘only way’ to determine patient wishes and provide optimal end-of-life care. When this occurs, the perceived authority of ACDs, or of patients’ choice not to participate in end-of-life discussions, may be undermined. Conclusions The intersection of ACDs and the 7-SP appears problematic within acute care. Clinicians’ uncertainty as to whether an ACD or 7-SP takes precedence, and when it should do so, suggests a need for further clarity and training on the roles of these documents in guiding clinical practice, the legislative context within which specific documentation is embedded, and the dynamics associated with collaborative decision-making in end-of-life care.

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Gregory Brian Crawford ◽  
Katherine Hodgetts ◽  
Teresa Burgess ◽  
Jaklin Eliott

Abstract Background Advance care planning involves the discussion and documentation of an individual’s values and preferences to guide their future healthcare should they lose capacity to make or communicate treatment decisions. Advance care planning can involve the individual’s completion of an Advance Care Directive (ACD), a legislated and common-law instrument which may include appointment of a substitute decision-maker and binding refusals of treatment. In South Australia, ACDs intersect in the acute-care context with the Resuscitation Plan 7-Step Pathway (7-SP), an integrated care plan written for and by clinicians, designed to organise and improve patients’ end-of-life care through the use of structured documentation. Here, we examine the perspectives of healthcare professionals (HCPs) within a hospital setting on the practical integration of ACDs and the 7-SP, exploring the perceived role, function, and value of each as they intersect to guide end-of-life care in an Australian hospital setting. Methods Qualitative data were collected via eight focus groups with a total of 74 HCPs (acute care, and oncology specialists; medical intern; general and emergency nurses; social workers) across two hospitals. Audio recordings were transcribed and thematically analysed. Results HCPs viewed ACDs as a potentially valuable means of promoting patient autonomy, but as rarely completed and poorly integrated into hospital systems. Conversely, the process and documentation of the 7-SP was perceived as providing clarity about clinicians’ responsibilities, and as a well-understood, integrated resource. Participants sometimes exhibited uncertainty around which document takes precedence if both were present. Sometimes, the routinisation of the 7-SP meant it was understood as the ‘only way’ to determine patient wishes and provide optimal end-of-life care. When this occurs, the perceived authority of ACDs, or of patients’ choice not to participate in end-of-life discussions, may be undermined. Conclusions The intersection of ACDs and the 7-SP appears problematic within acute care. Clinicians’ uncertainty as to whether an ACD or 7-SP takes precedence, and when it should do so, suggests a need for further clarity and training on the roles of these documents in guiding clinical practice, the legislative context within which specific documentation is embedded, and the dynamics associated with collaborative decision-making in end-of-life care.


2021 ◽  
Vol 30 (17) ◽  
pp. 1010-1014
Author(s):  
Pedro Lino ◽  
Mary Williams

Palliative/end-of-life care is an integral part of the district nursing service. There is increasing demand for palliative care to be delivered in the community setting. Therefore, there is a need for excellent collaboration between staff in primary and secondary care settings to achieve optimum care for patients. This article critically analyses the care delivered for a palliative patient in the hospital setting and his subsequent transition to the community setting. The importance of effective communication, holistic assessment in palliative care, advance care planning, organisational structures and the socio-cultural aspects of caring for patients at the end of life are discussed. Additionally, the article highlights the impact of substandard assessment and communication and the consequent effect on patients and families.


2016 ◽  
Vol 24 (1) ◽  
pp. 87-99 ◽  
Author(s):  
Ciara McGlade ◽  
Edel Daly ◽  
Joan McCarthy ◽  
Nicola Cornally ◽  
Elizabeth Weathers ◽  
...  

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice.


2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 45-45
Author(s):  
Yasmin Karimi ◽  
Vasu Divi ◽  
Sandy Srinivas ◽  
Andrea Segura Smith ◽  
Jennifer Hansen ◽  
...  

45 Background: 22% of US patients with cancer die in a hospital setting. As part of an effort to reduce unexpected inpatient (inpt) mortality, we reviewed records of all inpt cancer deaths at Stanford Hospital and reported findings to the treatment teams. Methods: Deaths with a cancer related ICD 9/10 code between 5/2017 and 6/2019 were reviewed by a multidisciplinary team. Findings and potential opportunities for improvement were communicated to the pt’s primary outpt oncologist, inpt oncologists and other involved providers. Observed to expected (O:E) mortality for the year prior to the intervention (5/2016–4/2017), Year 1 (5/2017–4/2018) and Year 2 (5/2018–4/2019) of the intervention were compared with two sided t test, α=0.05 (Vizient Inc, Irving TX). Changes in supportive care utilization and end of life care between cases reviewed in Year 1 and Year 2 were compared with chi square analysis. Results: There were 236 inpatient deaths reviewed. The median age was 64 years; 76% had solid tumors; 68% had metastatic disease; 33% had a previous inpt admission; 34% received chemotherapy in the last 2 weeks of life. Median length of stay was 7 days and 37% were admitted to the intensive care unit (ICU). The O:E mortality ratio significantly decreased between the year prior to intervention and Year 2 (0.95 vs. 0.69; p = .019), and Years 1 and 2 (0.90 vs. 0.69; p = .003). There was no noted difference in number of palliative care consults or resuscitation status at the time of death between Years 1 and 2. There was an increased frequency of advance care plan documentation on admission in Year 2 (p = .007). Conclusions: Cancer pts who die in the hospital have high rates of recent hospitalizations, chemotherapy/radiation use in the last 2 weeks of life and ICU admissions. Decrease in O:E is likely multifactorial. Potential factors are improved documentation of comorbidities, increased access to palliative care services, and facilitation of hospice referrals which were partially driven by results of our reviews and resulting awareness around end of life care. Work is ongoing to standardize documentation of goals of care conversations in the electronic medical record and employ lay health workers for earlier end of life discussions.


2020 ◽  
Vol 29 (17) ◽  
pp. 1010-1015
Author(s):  
Aby Mitchell ◽  
Scott Elbourne

This article discusses the practicalities of syringe drivers (subcutaneous continuous infusion pumps) for symptom control in patients requiring palliative or end-of-life care, which may form part of an advance care plan. It includes a discussion of palliative and end-of-life care, advance care planning, and when a syringe driver might be beneficial for the patient. It also provides step-by-step clinical guidance on setting up a syringe driver.


BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S96-S96
Author(s):  
Owen Obasohan ◽  
Deepak Tokas ◽  
Mamta Kumari

AimsTo measure the standard of care provided to patients who had a natural and expected death whilst in secure care at Roseberry Park Hospital, Middlesbrough.Mallard ward is a low secure psychiatric ward for older aged men suffering from cognitive difficulties and significant physical comorbidity in addition to a severe and enduring mental illness. The patient population is such that it will remain the most appropriate placement for some patients until their death. It is vital that staff members on Mallard ward and indeed all parts of the Trust are aware of the priorities for care of the dying person and ensure that care is provided in accordance with these priorities.The Leadership Alliance for the Care of Dying People (LACDP), a coalition of 21 national organisations, published One Chance to get it Right – Improving people's experience of care in the last few days and hours of life in June 2014. This document laid out five priorities for care of the dying person focussing on sensitive communication, involvement of the person and relevant others in decisions and compassionately delivering an individualised care plan.MethodThe data collection tool was adapted from End of Life Care Audit: Dying in Hospital, a national clinical audit commissioned by Healthcare Quality Improvement Partnership (HQIP) and run by the Royal College of Physicians. Data were collected from both electronic and paper records. There were three natural and expected deaths in the last two years.ResultFor all three patients, there was documented evidence that they were likely to die in the coming hours or days.End of life care discussion was held with the nominated persons and not with the patients due to their lack of mental capacity.The needs of the patients and their nominated persons were explored in all three cases.All patients had an individualised care plan which was followed.The palliative care team supported the staff with the care of these patients.The care provided was largely consistent with the priorities listed.ConclusionThe national audit compares performance of only acute NHS Trusts with no data to reflect the performance of mental health hospitals. It is imperative that mental health services work in collaboration with physical health and palliative care services so they are able to continue providing a high level of care to this patient group. Clinicians and staff involved in the care of dying patients also need to be adequately trained.


PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0252464
Author(s):  
Nathan Davies ◽  
Tanisha De Souza ◽  
Greta Rait ◽  
Jessica Meehan ◽  
Elizabeth L. Sampson

Background Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. Aim Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. Methods Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. Results Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. Conclusions The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.


2021 ◽  
pp. 003022282199770
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.


2021 ◽  
pp. 026921632110020
Author(s):  
Kieran L Quinn ◽  
Amy T Hsu ◽  
Christopher Meaney ◽  
Danial Qureshi ◽  
Peter Tanuseputro ◽  
...  

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.


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