Background: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians’ profiles, motivation, values and attitudes underlying such decisions and the correlation with their background are scarce. The aim was to investigate neonatologists' attitudes in Neonatal Intensive Care Units and correlate them with self-reported practices of end-of-life decisions and with their background data.
Methods: A structured questionnaire was distributed to all 28 Neonatal Intensive Care Units in Greece. One hundred and sixty two out of 260 eligible physicians answered anonymously the questionnaire (response rate 66%). Demographic and professional characteristics, self-reported practices and opinions were included in the questionnaire, along with a questionnaire of 12 items measuring physicians’ attitude and views ranging from value of life to quality of life approach (scale 1–5).
Results: Continuation of treatment in neonates with adverse prognosis without adding further therapeutic interventions was the most commonly reported EoL practice, when compared to withdrawal of mechanical ventilation. Physicians with a high attitude score (indicative of value of quality-of-life) were more likely to limit, while those with a low score (indicative of value of sanctity-of-life) were more likely for continuation of intensive care. Physicians’ educational level (p:0.097), involvement in research (p:0.093), religion (p:0.024) and position on the existing legal framework (p < 0.001) were factors that affected the attitude score.
Conclusions: Physicians presented with varying end-of-life practices. Limiting interventions in neonates with poor prognosis was strongly related to their attitudes. The most important predictors for physicians' attitudes were religiousness and belief for Greek legal system reform.
Contexte : La recherche sur laquelle s’appuie cet article a été réalisée au cours d’un contrat doctoral en psychologie clinique. La question déployée autour des intentions et processus psychiques dans les prises de décisions à la place d’autrui dans les situations de fin de vie, a permis la mise en place d’une recherche de terrain par le biais d’observations et d’entretiens auprès de professionnels de soins palliatifs. Parmi les trois « triangulations cliniques » examinées dans la thèse, nous choisissons de nous arrêter sur une configuration particulière qui nous permet de mettre en exergue les affects négatifs qui prennent parfois place dans la relation de soin et la manière dont ceux-ci habitent les décisions que nous prenons à la place de nos patients.
Objectifs : Dans cette présentation, nous tentons de mettre en lumière certains mouvements inconscients qui nous semblent inhérents à la relation d’aide à la personne vulnérable, mais exacerbés lors de la rencontre avec des patients "déviants" (non compliants, dans le refus, etc.). Nous verrons comment cette négativité, prise dans des alliances inconscientes (R. Kaës, 2009), peut générer des situations qui relèvent parfois d’une véritable violence du soin (Ciccone et al., 2014) qu’il semble essentiel de mieux identifier afin de garantir une véritable éthique des processus décisionnels qui imprègnent les pratiques soignantes.
Méthode : Le recueil de données s’appuie sur des entretiens de recherche et des temps d’observation réalisés au sein de deux unités de soins palliatifs (USP) situées en France, organisés en deux sessions de 13 journées et/ou nuitées. Les entretiens ont été réalisés sous la forme d’une discussion guidée avec plusieurs professionnels (médecins, infirmières, aides-soignantes ou psychologues) volontaires. Les "triangulations cliniques" sont l’aboutissement d’un travail de recomposition au sujet d’un patient accueilli dans l’USP (1er point) à partir des notes d’observations de la chercheuse (2e point) et du discours des professionnels (3e point). Dans cet article, c’est le récit de M. Aïe qui est présenté parmi les trois triangulations cliniques soutenant le travail de thèse, dans ce qu’il offre la possibilité d’une mise en perspective de plusieurs niveaux de complexité autour de la négativité et des décisions prises à la place d’autrui.
Résultats : Cette présentation offre une occasion de penser le soin ainsi que la décision prise à la place d’autrui dans des dynamiques nouvelles. Les résultats cliniques obtenus à partir de la méthode de recherche originale mise en place dans la thèse montrent toute la fécondité d’un travail qui repose sur l’analyse des situations complexes à partir d’une triangulation clinique, cette triangulation permettant d’étudier les enjeux subjectifs susceptibles de s’exprimer à différents niveaux. C’est par ailleurs la perspective groupale qui est ici mise en relief, notamment au travers les alliances inconscientes basées sur le négatif de certaines situations de soin. Le récit de M. Aïe nous permet d’illustrer comment la haine se diffuse inconsciemment au sein des décisions prises pour la personne vulnérable. Ces conséquences nous appellent à déployer des stratégies pour tenter de symboliser ces affects déliants.
Conclusion : Décider à la place de l’autre vulnérable n’est une mince affaire pour personne et convoque chaque "décideur" dans ce qu’il a éprouvé à être le sujet vulnérable d’une décision prise par autrui : la figure du nourrisson en étant l’originaire (Ciccone, Bonnefoy, Bonneville, Calamote, & Deronzier, 2012). Face aux situations extrêmes de la vie où se jouent la précarité ontologique du sujet, depuis le début jusqu’à la toute fin de la vie, peut-être faut-il se saisir de positions subversives (Pacific, 2011) pour travailler l’idée qu’envisager la maltraitance comme potentiel du soin peut être un préalable à la bientraitance.
INTRODUCTION: We hypothesized that trauma providers are reticent to consider palliative measures in acute trauma care.
METHODS: An electronic survey based on four patient scenarios with identical vital signs and serious blunt injuries, but differing ages and frailty scores was sent to WTA and EAST members.
RESULTS: 509 (24%) providers completed the survey. Providers supported early transition to comfort care in 85% old-frail, 53% old-fit, 77% young-frail, and 30% young-fit patients. Providers were more likely to transition frail vs. fit patients with (OR = 4.8 [3.8-6.3], p < 0.001) or without (OR = 16.7 [12.5-25.0], p < 0.001) an advanced directive (AD) and more likely to transition old vs. young patients with (OR = 2.0 [1.6-2.6], p < 0.001) or without (OR = 4.2 [2.8-5.0], p < 0.001) an AD.
CONCLUSIONS: In specific clinical situations, there was wide acceptance among trauma providers for the early institution of palliative measures. Provider decision-making was primarily based on patient frailty and age. ADs were helpful for fit or young patients. Provider demographics did not impact decision-making.
BACKGROUND: Long-term survival and functional outcomes should influence admission decisions to intensive care, especially for patients with advanced disease.
AIM: To determine whether physicians' predictions of long-term prognosis influenced admission decisions for patients with and without advanced disease.
DESIGN: A prospective study was conducted. Physicians estimated patient survival with intensive care and with care on the ward, and the probability of 4 long-term outcomes: leaving hospital alive, survival at 6 months, recovery of functional status, and recovery of cognitive status. Patient mortality at 28 days was recorded. We built multivariate logistic regression models using admission to the intensive care unit (ICU) as the dependent variable.
SETTING/PARTICIPANTS: ICU consultations for medical inpatients at a Swiss tertiary care hospital were included.
RESULTS: Of 201 evaluated patients, 105 (52.2%) had an advanced disease and 140 (69.7%) were admitted to the ICU. The probability of admission was strongly associated with the expected short-term survival benefit for patients with or without advanced disease. In contrast, the predicted likelihood that the patient would leave the hospital alive, would be alive 6 months later, would recover functional status, and would recover initial cognitive capacity was not associated with the decision to admit a patient to the ICU. Even for patients with advanced disease, none of these estimated outcomes influenced the admission decision.
CONCLUSIONS: ICU admissions of patients with advanced disease were determined by short-term survival benefit, and not by long-term prognosis. Advance care planning and developing decision-aid tools for triage could help limit potentially inappropriate admissions to intensive care.
AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
DESIGN: A qualitative interview study.
METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.
RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making.
IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.
BACKGROUND: This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources.
METHODS: All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation.
RESULTS: Four resource-related themes were identified: (1) doctors' ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment.
CONCLUSION: Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors' duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment.
Background: In 2017, the American College of Surgeons' Trauma Quality Improvement Program adopted a Palliative Care Best Practices Guidelines that calls for early palliative care for hospitalized injured patients.
Objective: To develop an educational intervention to address the palliative needs of injured patients.
Design: Palliative faculty presented a three-part monthly lecture series focused on core primary palliative skills, including the components of palliative care; conducting family conferences; communication skills for complex medical decision making; pain management; and, end-of-life planning. Additionally a palliative provider joined trauma team rounds every other week to highlight opportunities for enhanced palliative assessments, identify appropriate consults, and provide just-in-time teaching.
Setting: Urban, level-1 trauma center.
Measurements: Surgical residents completed a survey at the beginning and end of the academic year, during which the intervention took place. All survey questions were answered with a 5-point Likert scale. Rate of palliative care consultation was also tracked.
Results: There were statistically significant perceived improvements in goals-of-care discussions (initial discussion—4.30 vs. 3.52, p = 0.4; follow-up discussion—3.89 vs. 3.05, p = 0.021) and documentation (3.89 vs. 2.9, p = 0.032), incorporation of patient preferences into decision making (4.20 vs. 3.43, p = 0.04), discussion of palliative needs during rounds (4.30 vs. 2.81; p < 0.001) and care transitions (3.90 vs. 3.05, p = 0.008), respect for decisions to forgo life-sustaining treatments (4.40 vs. 3.52, p = 0.004), and identification of advance directives (4.11 vs. 3.05, p = 0.002) and surrogate decision maker (4.44 vs. 3.60, p = 0.015). The overall rate of palliative specialist consultation also increased (8.4% vs. 16.1%, p < 0.001).
Conclusion: Embedding primary palliative education into usual didactic and rounding time for an inpatient trauma team is an effective way to help residents develop palliative skills and foster culture change. Educational partnerships such as this may serve as an example to other trauma programs.
The Physician Orders for Life-Sustaining Treatment (POLST) program was developed to enhance quality of care delivered at End-of-Life (EoL). Although positive impacts of the POLST program have been identified, the association between a program maturity status and nursing home resident's likelihood of dying in their current care settings remain unanswered. This study aims to evaluate the impact of the POLST program maturity status on nursing home residents' place of death. Using multiple national-level datasets, we examined total 595,152 residents and their place of death. The result showed that the long-stay residents living in states where the program was mature status had 12% increased odds of dying in nursing homes compared that of non-conforming status. Individuals residing in states with developing program status showed 11% increase in odds of dying in nursing homes. The findings demonstrate that a well-structured and well-disseminated POLST program, combined with a continued effort to meet high standards of quality EoL care, can bring out positive health outcomes for elderly patients residing in care settings.
BACKGROUND: Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments (LSTs). The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units (ICU).
METHODS: A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, legal and religious leaders.
RESULTS: Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of (36.3%). Most respondents were between 30 and 49 years old (72%), Catholic Christians (60%), anesthesiologists (63%), working in Beirut (47%). Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the "Principle of Double Effect" (i.e. adding analgesia and or sedation to patients after the withholding/withdrawal decisions in order to prevent their suffering and allow their comfort, even though it might hasten the dying process). The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary (92%), involving the family (68%), and the patient (65%), or his advance directives (77%) or his surrogate (81%) and the nurses (78%). The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices (withholding or withdrawing LSTs from patients when appropriate).
CONCLUSION: Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country.
BACKGROUND: At the end of patients' lives, physicians sometimes provide medication with the explicit intention to hasten death. Physicians' assessment of such acts varies. We studied which characteristics are associated with physicians' classification of these acts.
METHODS: This study concerns a secondary analysis of a nationwide study on the practice of medical decision-making at the end of life. In 2015, attending physicians of a sample of deceased people (n=9,351) received a questionnaire about end-of-life care and decision-making. The response rate was 78%. We studied 851 cases in which physicians reported that the patient had died as a result of medication they had provided with the explicit intention to hasten death. Chi-square tests and logistic regression analyses were performed.
RESULTS: If medication had been provided with the explicit intention to hasten death at the explicit request of the patient, physicians considered "euthanasia", "assisted suicide" or "ending of life" the most appropriate term for their course of action in 82% of all cases, while 17% of physicians chose the term "palliative or terminal sedation". Physicians' classification of their act as "euthanasia", "assisted suicide" or "ending of life" was less likely when patients had a short (1-7 days) or very short (max. 24 hours) life expectancy. Furthermore, such classification was less likely when their act had involved the use of other medication than muscle relaxants. The limited number of cases in which patients had been provided with medication without an explicit patient request were never classified as "euthanasia", "assisted suicide" or "ending of life".
CONCLUSIONS: Physicians rarely classify the provision of medication with the explicit intention of hastening death as "euthanasia", "assisted suicide" or "ending of life" when patients are in the dying phase and when they provide other medication than muscle relaxants. In these cases, acts are mostly classified as "palliative or terminal sedation". This suggests that the legal distinction between euthanasia and palliative care may not always be clear in clinical practice.
Background: Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.
Objective: To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.
Design: Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).
Setting/Subjects: Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).
Results: During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.
Conclusions: Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.
Critical care clinicians strive to reverse the disease process and are frequently faced with difficult end-of-life (EoL) situations, which include transitions from curative to palliative care, avoidance of disproportionate care, withholding or withdrawing therapy, responding to advance treatment directives, as well as requests for assistance in dying. This article presents a summary of the most common issues encountered by intensivists caring for patients around the end of their life. Topics explored are the practices around limitations of life-sustaining treatment, with specific mention to the thorny subject of assisted dying and euthanasia, as well as the difficulties encountered regarding the adoption of advance care directives in clinical practice and the importance of integrating palliative care in the everyday practice of critical-care physicians. The aim of this article is to enhance understanding around the complexity of EoL decisions, highlight the intricate cultural, religious, and social dimensions around death and dying, and identify areas of potential improvement for individual practice.
Background: This study examined the experience of withholding or withdrawing life-sustaining treatment in patients hospitalized in the intensive care units (ICUs) of a tertiary care center. It also considers the role that intensivists play in the decision-making process regarding the withdrawal of life-sustaining treatment.
Methods: We retrospectively analyzed the medical records of 227 patients who decided to withhold or withdraw life-sustaining treatment while hospitalized at Ewha Womans University Medical Center Mokdong between April 9 and December 31, 2018.
Results: The 227 hospitalized patients included in the analysis withheld or withdrew from life-sustaining treatment. The department in which life-sustaining treatment was withheld or withdrawn most frequently was oncology (26.4%). Among these patients, the most common diagnosis was gastrointestinal tract cancer (29.1%). A majority of patients (64.3%) chose not to receive any life-sustaining treatment. Of the 80 patients in the ICU, intensivists participated in the decision to withhold or withdraw life-sustaining treatment in 34 cases. There were higher proportions of treatment withdrawal and ICU-to-ward transfers among the cases in whom intensivists participated in decision making compared to those cases in whom intensivists did not participate (55.9% vs. 4.3% and 52.9% vs. 19.6%, respectively).
Conclusion: Through their participation in end-of-life discussions, intensivists can help patients' families to make decisions about withholding or withdrawing life-sustaining treatment and possibly avoiding futile treatments for these patients.
The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.
Objectif : Cette étude vise à développer des axes de réflexion concernant la fin de vie et ainsi mieux comprendre les facteurs éthique et émotionnel en jeu dans la prise de décision chez le médecin travaillant en soins palliatifs et plus particulièrement dans une situation où il est question d’une limitation et/ou arrêt de traitement (LAT).
Méthode: La réflexion éthique et le vécu émotionnel de 10 médecins, exerçant en services ou en équipes mobiles de soins palliatifs dans la région Auvergne-Rhône-Alpes, ont été évalués par auto-questionnaire.
Résultats: Dans un contexte de prise de décision de LAT, les médecins ont estimé que la réflexion éthique a un impact sur leur prise de décision dans leur pratique professionnelle en général mais également dans leur dernière situation de LAT. Les résultats diffèrent concernant le vécu émotionnel, 80 % des médecins ont pensé que le vécu émotionnel jouait un rôle dans leur pratique professionnelle générale. En revanche, 70 % des médecins considèrent que leur vécu émotionnel n’a pas influencé la prise de décision lorsqu’ils sont interrogés plus spécifiquement sur la dernière situation clinique où il était question d’une LAT.
Conclusion : Les médecins considèrent que la réflexion éthique est bien présente et semble indispensable pour garder, au centre de la décision, le patient dans son unicité. Au vu des résultats, la prise de décision de LAT semble faire ressentir des émotions fortes à ces médecins qui paraissent difficilement identifiables et exprimables.
While in Western European countries, the end-of-life decisions have become a matter of public policy, this paper provides a detailed analysis of end-of-life decisions in Albania by focusing on instructional medical directives. The manuscript investigates the Albanian legal system, the documents published by the National Ethics Committee and the National Committee of Health, as the two main advisory public bodies on health issues, as well as the national medical jurisprudence and the Code of Medical Ethics. After emphasizing the importance of instructional medical directives and considering the international literature that has underlined the ethical principle of patient autonomy, this paper provides some policy suggestions. In the conclusion, this contribution highlights the importance of ad hoc rules governing instructional medical directives as well as the ethical principles and international literature as an instrument to fill the gap in the national system. In addition, particular attention is given to the application of ethical principles in end-of-life decisions in the current pandemic situation.
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review utilizes the Ring Theory of Personhood (RToP) to evaluate how a physician's concept of personhood is affected caring for terminally ill children in order to better support them holistically.
METHODS: Using PRISMA Guidelines, 14 researchers carried out independent searches of PubMed, CINAHL, PsycINFO, Cochrane Library and gray literature databases for articles published between 2000 to 2019. Concurrent and independent employment of content and thematic analysis (Split Approach) was used to enhance the trustworthiness of the analysis.
RESULTS: 13,424 titles and abstracts were retrieved, 188 full texts were evaluated, and 39 articles were included and analyzed. Identical categories and themes identified using the Split Approach suggest that caring for dying children in PPC impacts the physician's professional identity, clinical decision making, personal well-being and relationships. The data also suggests that the magnitude of these effects depends on the presence of protective and risk factors.
CONCLUSION: Aside from providing a novel insight into the upon the physician, this review proffers a unique approach to accounting for the presence, magnitude and influence of incoming catalysts, resultant conflicts, and protective and risk factors upon the physician's personhood. Further studies into the changes in personhood are required. Design of a personalized assessment tool based on the RToP will help direct timely, appropriate and personalized support to these physicians.
AIM: To better understand the participation of nursing staff in end-of-life nutrition and hydration decision-making in an American nursing home.
DESIGN: A qualitative exploration with ethnographic focus.
METHODS: In April 2017, in-person, semi-structured interviews were performed with 19 nursing staff members in a nursing home located in the south-eastern United States. Additional information was gathered through participant observation during interviews and review of organizational and regulatory policies. Transcripts were coded and analysed using qualitative methods described by Roper and Shapira (2000).
RESULTS: Three primary themes relating to nursing staff participation in end-of-life nutrition and hydration decision-making were identified: (a) Formal decision-making: decisions made and implemented by persons with the authority to make legal and binding care decisions in the nursing home setting; (b) Informal decision-making: decisions not requiring medical orders; and (c) Influential factors: factors that influence actions of nursing staff.
CONCLUSION: A variety of factors have an impact on nursing staff participation in end-of-life nutrition and hydration decision-making. Participation is closely aligned with the type of decision, whether formal or informal, and role, whether Certified Nursing Assistant/Aide, Licensed Practical/Vocational Nurse, or Registered Nurse.
IMPACT: End-of-life nutrition and hydration decision-making in nursing homes differs from decision-making in other care settings and presents a challenge globally. Interventions that support the participation of nursing staff in end-of-life nutrition and hydration decision-making have the potential to positively impact the experiences of residents and family members faced with these issues in the nursing home setting.
BACKGROUND: Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in population-based surveys.
METHODS: Modelled on validated questionnaires from research in developed countries, our questionnaire was adapted to the cultural sensitivity and medico-legal context of Trinidad and Tobago. Two sets of semi-structured face-to-face cognitive interviews were done with a sample of physicians, sampling was purposive. Phase 1 assessed interpretation of the questions, terminology and content of the questionnaire. Phase 2 was tested on a heterogeneous group of physicians to identify and fix problematic questions or recurring issues. Adjustments were made incrementally and re-tested in successive interviews.
RESULTS: Eighteen physicians were interviewed nationwide. Adaptations to questionnaires used in developed countries included: addition of a definition of palliative care, change of sensitive words like expedited to influenced, adjustments to question formulations, follow-up questions and answer options on medications used were added, the sequence, title and layout were changed and instructions for completion were included at the beginning of the questionnaire.
CONCLUSION: A new instrument for assessing and documenting end-of-life care and circumstances of dying in a small, resource-poor Caribbean country was developed and validated, and can be readily used as a mortality follow-back instrument. Our methods and procedures of development can be applied as a guide for similar studies in other small developing countries.