“I Want to Live, Until I don't Want to Live Anymore”: Involving Children With Life-Threatening and Life-Shortening Illnesses in Decision Making About Care and Treatment

2010 ◽  
Vol 45 (3) ◽  
pp. 329-343 ◽  
Author(s):  
Myra Bluebond-Langner ◽  
Jean Bello Belasco ◽  
Marla DeMesquita Wander
Keyword(s):  
Decision Making ◽  
Life Threatening ◽  
Care And Treatment

Care of children with advanced illness

2021 ◽  
pp. 1035-1045
Author(s):  
Myra Bluebond-Langner ◽  
Richard W. Langner ◽  
Ignasi Clemente
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advanced Illness ◽  
Illness Trajectory ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Care And Treatment ◽  
Parent Child

Based on the holistic, family-centred approach of paediatric palliative care, this chapter examines specific aspects of the clinician, parent, and child roles in the care and treatment of children and young persons with life-limiting conditions and life-threatening illnesses. In particular, it identifies communication, information, decision-making, and participation preferences of children and young persons with advanced illness and their parents. Within the clinician–parent–child triad, the chapter sets forward suggestions for clinicians on how to manage differences between a child and his or her parents, and more generally, on how to approach the communication and decision-making processes throughout a child’s or young person’s illness trajectory.

Of Love and Laetrile: Medical Decision Making in a Child's Best Interests

1979 ◽  
Vol 5 (3) ◽  
pp. 269-294
Author(s):  
Eve T. Horwitz
Keyword(s):  
Decision Making ◽  
Medical Treatment ◽  
Burden Of Proof ◽  
State Intervention ◽  
Convincing Evidence ◽  
State Agency ◽  
Best Interests ◽  
Medical Decision ◽  
Appropriate Treatment ◽  
Life Threatening

AbstractTwo recent cases have raised important questions concerning the appropriateness of state intervention in parental choices of unorthodox medical treatment for children with life-threatening conditions. This Note first discusses whether, and if so, when, state intervention in a child's treatment selection by its parents is appropriate, and then analyzes the tests a court should apply in deciding upon an appropriate treatment. The Note recommends a decision-making approach that requires the appropriate state agency to prove, by clear and convincing evidence, that the parents' choice of medical treatment either is directly or is indirectly harming their child. Under this approach, if the state meets its burden of proof the court then must apply the ‘best interests’ test, rather than the ‘substituted judgment’ test, to choose an appropriate medical treatment for the child.

scholarly journals Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Saila Haapasalmi ◽  
Reetta P. Piili ◽  
Riina Metsänoja ◽  
Pirkko-Liisa I. Kellokumpu-Lehtinen ◽  
Juho T. Lehto
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Legal Protection ◽  
Postal Survey ◽  
Advanced Dementia ◽  
Background Factors ◽  
Physician Decision Making ◽  
Care Approach ◽  
Life Threatening ◽  
The Impact

Abstract Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

Anaesthetic considerations for emergency laparotomy

Nowa Medycyna ◽  
2020 ◽  
Vol 27 (3) ◽  
Author(s):  
Jacek Wadełek
Keyword(s):  
Risk Assessment ◽  
Decision Making ◽  
High Risk ◽  
Adverse Outcomes ◽  
Emergency Laparotomy ◽  
Life Threatening ◽  
The Right ◽  
Level Of Experience ◽  
Time Frames ◽  
Reduced Time

The majority of patients undergoing emergency laparotomy have potentially life?threatening conditions that require prompt intervention. The reduced time?frames available due to surgical urgency necessitate prompt and senior decision?making to minimise delays. The time taken to correct any anomalies needs to be balanced against the need for prompt surgery, particularly in time?sensitive situations involving sepsis or hypovolaemia. Therefore, corrective measures may be performed in parallel with surgery. Patients undergoing emergency laparotomy are at a high risk of adverse outcomes. Key elements of care for these patients include repeated risk assessment, early antibiotic therapy, as well as fluid resuscitation and appropriate timely interventions provided by clinicians with the right level of experience.

Indigenous Language Media and Communication for Health Purposes in the Digital Age

2022 ◽  
pp. 33-49
Author(s):  
Toyosi Olugbenga Samson Owolabi ◽  
Nahimah Ajikanle Nurudeen
Keyword(s):  
Decision Making ◽  
Health Information ◽  
Health Professionals ◽  
Indigenous Language ◽  
Digital Era ◽  
The People ◽  
The World ◽  
Life Threatening ◽  
Potential Channels ◽  
Media And Communication

All over the world, the issues of health and ill health have generated heightened attention among health professionals and communication experts. This is expected in view of the prevalence of increasingly life-threatening ailments. It is therefore not surprising that matters bordering on health have been elevated to the front burner of policy and decision making both at the national and multinational levels. This chapter, therefore, observes that the reason most health information doesn't get to the intended audiences and produce the desired effect is because they are not communicated in the most intelligible language to the people. Indigenous language media are potential channels through which health information could reach the grassroots where more than 70 percent of the nation's populations are resident. It also perceived that health communication could be made to produce more effect in this digital era as more citizen journalists could be raised to communicate in the indigenous language.

Respecting the autonomy of the living and dying

2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Human Rights ◽  
International Human Rights Law ◽  
Advanced Dementia ◽  
Persons With Disabilities ◽  
Content Type ◽  
Care And Support ◽  
Recent Developments ◽  
Care And Treatment

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.

scholarly journals Decision-making dilemmas of paediatricians: a qualitative study in Japan

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e026579
Author(s):  
Momoko Sasazuki ◽  
Yasunari Sakai ◽  
Ryutaro Kira ◽  
Naoko Toda ◽  
Yuko Ichimiya ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Professional Education ◽  
Best Interests ◽  
Complex Structures ◽  
Social Consensus ◽  
Face To Face ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Five Elements

ObjectiveTo delineate the critical decision-making processes that paediatricians apply when treating children with life-threatening conditions and the psychosocial experience of paediatricians involved in such care.DesignWe conducted semistructured, individual face-to-face interviews for each participant from 2014 to 2015. The content of each interview was subjected to a comprehensive qualitative analysis. The categories of dilemma were extracted from a second-round content analysis.ParticipantsParticipants were board-certified paediatricians with sufficient experience in making decisions in relation to children with severe illnesses or disabilities. We repeated purposive sampling and analyses until we reached saturation of the category data.ResultsWe performed interviews with 15 paediatricians. They each reported both unique and overlapping categories of dilemmas that they encountered when making critical decisions. The dilemmas included five types of causal elements: (1) paediatricians’ convictions; (2) the quest for the best interests of patients; (3) the quest for medically appropriate plans; (4) confronting parents and families and (5) socioenvironmental issues. Dilemmas occurred and developed as conflicting interactions among these five elements. We further categorised these five elements into three principal domains: the decision-maker (decider); consensus making among families, colleagues and society (process) and the consequential output of the decision (consequence).ConclusionsThis is the first qualitative study to demonstrate the framework of paediatricians’ decision-making processes and the complex structures of dilemmas they face. Our data indicate the necessity of establishing and implementing an effective support system for paediatricians, such as structured professional education and arguments for creating social consensus that assist them to reach the best plan for the management of severely ill children.

scholarly journals Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e035863
Author(s):  
Marije Brouwer ◽  
Els L M Maeckelberghe ◽  
Agnes van der Heide ◽  
Irma Hein ◽  
Eduard Verhagen
Keyword(s):  
Decision Making ◽  
The Netherlands ◽  
End Of Life ◽  
Human Beings ◽  
Open Communication ◽  
Qualitative Interview Study ◽  
Threatening Condition ◽  
Life Threatening ◽  
End Of Life Decision ◽  
Life Decision

ObjectiveTo identify barriers, as perceived by parents, to good care for children with life-threatening conditions.DesignIn a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.SettingThe Netherlands.Participants64 parents of 44 children.ResultsParents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.ConclusionsThe barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.

Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems

2020 ◽  
pp. medethics-2020-106222
Author(s):  
Joseph Dimech ◽  
Emmanuel Agius ◽  
Julian C Hughes ◽  
Paul Bartolo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Ethical Issues ◽  
Tube Feeding ◽  
Care Plan ◽  
Term Care ◽  
Swallowing Problems ◽  
Swallowing Difficulties ◽  
Life Threatening ◽  
End Stage

BackgroundDecision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.AimThis study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.MethodThe study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.ResultsFour themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.ConclusionDecision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

Sign in / Sign up

Export Citation Format

Share Document