Advance Care Planning in palliative care: A qualitative investigation into the perspective of Paediatric Intensive Care Unit staff

2015 ◽  
Vol 29 (4) ◽  
pp. 371-379 ◽  
Author(s):  
Sarah Mitchell ◽  
Jeremy Dale
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Young People ◽  
End Of Life ◽  
Advance Care Planning ◽  
Paediatric Intensive Care Unit ◽  
Paediatric Intensive Care ◽  
Care Planning ◽  
Children And Young People ◽  
Advance Care

Background: The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. Aim: To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Design: Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. Setting/participants: UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Findings: Four main themes emerged: recognition of an illness as ‘life-limiting’; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Conclusions: Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life.

Health disparities in advance care planning at a safety-net hospital.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 125-125 ◽  
Author(s):  
Elizabeth Levin ◽  
Michael Ries ◽  
Jeffrey B Rubins ◽  
Andres Wiernik
Keyword(s):  
Health Care ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
Advance Care Planning ◽  
Safety Net ◽  
Stage Iii ◽  
English Speakers ◽  
Care Planning ◽  
Advance Care ◽  
English Speaking

125 Background: Advance health care directives (AHCDs) are recommended by ASCO as a strategy to improve compliance with patient wishes at the end-of-life, thereby facilitating appropriate use of health care resources. We already know too few cancer patients complete AHCDs, but we know less about barriers to their completion. This study assessed the frequency with which AHCDs were completed in different ethnic groups and whether hospice enrollment varied by ethnicity. Methods: Retrospective analysis conducted at Hennepin County Medical Center in Minneapolis, MN with review of the cancer registry data from 2008 to 2013. Data were collected for deceased patients with stage III-IV cancer from the time of diagnosis through death. Demographics, AHCD, hospital deaths, enrollment in hospice, and individual patient data were analyzed using logistic regression, adjusting for both race and language as covariates. Results: From 2008 to 2013, there were 273 patients diagnosed with stage III-IV cancer and followed through death. Fourteen percent of patients were non-English speaking. Thirty-one percent were African American (AA), 4% were Hispanic, and 4% were Asian. Only 21% of patients completed an AHCD during their care, and none were Asian or Hispanic. English speakers were almost five times more likely than non-English speakers to have an AHCD (OR = 4.66, 95% CI = (1.06, 20.46), p = 0.04). Fifty-one percent of English-speaking patients enrolled in hospice compared to 39% of non-English-speaking patients (p = 0.08). Sixty percent of patients with an AHCD enrolled in hospice compared to 46% of those patients without an AHCD (p = 0.10). Forty-three percent of patients with an AHCD died in the hospital, 33% of whom died in an intensive care unit (ICU), versus 46% without an AHCD, 49% of whom died in an ICU. Of patients with advanced cancer, 46% died in the hospital and 21% died in the intensive care unit (ICU). Conclusions: Non-English-speaking patients are far less likely to have an AHCD than English speakers. Some ethnicities in our study had no patients with an AHCD. Since completing an AHCD may increase hospice enrollment and decrease ICU deaths, strategies to promote advance care planning are urgently needed, particularly with non-English speaking patients.

scholarly journals Palliative Care of the Infant and Child in the Paediatric Intensive Care Unit

2021 ◽  
Author(s):  
Maeve McAllister ◽  
Ann-Marie Crowe ◽  
Roisin Ni Charra ◽  
Julie Edwards ◽  
Suzanne Crowe
Keyword(s):  
Intensive Care Unit ◽  
Palliative Care ◽  
Intensive Care ◽  
Paediatric Intensive Care Unit ◽  
Paediatric Intensive Care ◽  
Life Issues ◽  
Advance Care ◽  
End Of Life Issues ◽  
Individualised Care

In this chapter we discuss the delivery of palliative care in the paediatric intensive care unit environment. Illustrated by challenging cases, we describe the role of intensive care in symptom management for the child with terminal or life-limiting illness. We detail the importance of a multidisciplinary team and their roles in the provision of individualised care for the child and their family. The importance of family-centred care and advance care planning is expanded upon. In addition, we explore end of life issues that are particular to children in intensive care such as withdrawal of life-sustaining therapies and organ donation. Finally, we discuss how to ensure the delivery of high-quality palliative care in the paediatric intensive care environment.

Advance care planning and terminal intensive care unit admissions for cancer patients: We can do better.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23000-e23000
Author(s):  
Joseph Heng ◽  
Ramy Sedhom ◽  
Thomas J. Smith
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
High Risk ◽  
Advance Care Planning ◽  
Hematologic Malignancies ◽  
Cancer Center ◽  
Care Planning ◽  
Code Status ◽  
Risk Of Death ◽  
Advance Care

e23000 Background: Terminal oncology intensive care unit (ICU) admissions are associated with high healthcare costs and decreased quality of life. Chemotherapy can be given in non-curative settings to optimize symptom control, but use of it at the end of life does not improve longevity. In addition, goals of care are too often not addressed for patients at high risk of death. Methods: We carried out a retrospective review identifying patients of a large academic cancer center who were admitted to and expired in an ICU between January 1, 2017 to December 31, 2018. Results: 120 patients met inclusion criteria. Median age was 58 years. Only 15.0% (n = 18) of all patients had advance directives. The majority of patients (94.1%, n = 113) were FULL CODE on admission. Median duration of admission was 10 days. Median time to death from ICU admission was 7.5 days. 65.0% (n = 78) of all patients were intubated, while 15.0% (n = 15) received CPR. 58.3% (n = 70) of the study population had solid malignancies; of note, 97.1% (n = 68) of these patients were metastatic at presentation and had a median ECOG performance status of 2. Patients with metastatic solid tumors typically have a more indolent course of progression compared to patients with hematologic malignancies. However, only 23.5% (n = 16) had discussed goals of care or code status with their outpatient oncologists, despite many seeing them within the last month prior to admission (83.8%, n = 57). Similarly, only 4.0% (n = 2) of patients with hematologic malignancies had advance care planning discussions with their oncologists prior to their terminal ICU admission. 27.5% (n = 33) of all patients had an inpatient palliative care consult. The inpatient pulmonary/critical care team had a high rate of inpatient code status transitions, with 85.6% (n = 97) of FULL CODE admissions transitioning to DNR/DNI. Conclusions: These findings reflect contemporary practice at a major academic cancer center. Despite most patients having regular contact with their outpatient oncologists, the intensity of health care utilization noted highlights a need to optimize recognition of patients at high risk of death and to engage patients in advance care planning discussions to avoid terminal ICU admissions.

scholarly journals Advance Care Planning: practicalities, legalities, complexities and controversies

2014 ◽  
Vol 100 (4) ◽  
pp. 380-385 ◽  
Author(s):  
Karen A Horridge
Keyword(s):  
Decision Making ◽  
Young People ◽  
Advance Care Planning ◽  
Clinical Care ◽  
Active Management ◽  
Ethical Framework ◽  
Multidisciplinary Teams ◽  
Care Planning ◽  
Children And Young People ◽  
Advance Care

Increasing numbers, complexities and technology dependencies of children and young people with life-limiting conditions require paediatricians to be well prepared to meet their changing needs. Paediatric Advance Care Planning provides a framework for paediatricians, families and their multidisciplinary teams to consider, reflect and record the outcome of their conversations about what might happen in the future in order to optimise quality of clinical care and inform decision-making. For some children and young people this will include discussions about the possibility of death in childhood. This may be unexpected and sudden, in the context of an otherwise active management plan or may be expected and necessitate discussions about the process of dying and attention to symptoms. Decision-making about appropriate levels of intervention must take place within a legal and ethical framework, recognising that the UK Equality Act (2010) protects the rights of disabled children and young people and infants and children of all ages to the same high quality healthcare as anyone else.

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