Elderly patients with advanced chronic kidney disease have high symptom burden, despite the progress in renal replacement therapy. Dialysis is not a good option especially for frail elderly patients with higher comorbidity rate. Integration of palliative and supportive care to conservative management improves quality of life and prolongs survival of these patients. Conservative management of symptoms, prognostication, communication of advance care plans and shared-decision making should be a part of physicians skills. There are some recommended prognostication systems in nephrology, which can help to facilitate the physician-patient communication about therapeutic goals of care. Ethical and jural aspects of the process are also very important.
Disconnecting a patient from artificial life support, on their request, is often if not always a matter of letting thcardiem die, not killing them-and sometimes, permissibly doing so. Stopping a patient's heart on request, by contrast, is a kind of killing, and rarely if ever a permissible one. The difference seems to be that procedures of the first kind remove an unwanted external support for bodily functioning, rather than intervening in the body itself. What should we say, however, about cases at the boundary-procedures involving items that seem bodily in some respects, but not others? When, for instance, does deactivating an implanted device like a pacemaker count as killing, and when as letting die? Contra existing proposals, I argue that the boundaries of the body for this purpose are not drawn at the boundaries of the self, or (if this is different) the human organism. Nor should we determine when we are killing and when we are letting die by deferring to existing practices for distinguishing ongoing from completed treatment. Rather, I argue that whether something (organic or inorganic) counts as body part for purposes of this distinction depends on the results of a normative analysis of the particular character of our rights in it-particularly, whether and in what way these rights ought to be alienable. I conclude by arguing that there are likely good reasons to recognize distinctively "bodily" rights and restrictions in at least some implantable devices.
BACKGROUND: Donation after circulatory determination of death (DCD) is responsible for the largest increase in deceased donation over the past decade. When the Canadian DCD guideline was published in 2006, it included recommendations to create standard policies and procedures for withdrawal of life-sustaining measures (WLSM) as well as quality assurance frameworks for this practice. In 2016, the Canadian Critical Care Society produced a guideline for WLSM that requires modifications to facilitate implementation when DCD is part of the end-of-life care plan.
METHODS: A pan-Canadian multidisciplinary collaborative was convened to examine the existing guideline framework and to create tools to put the existing guideline into practice in centres that practice DCD.
RESULTS: A set of guiding principles for implementation of the guideline in DCD practice were produced using an iterative, consensus-based approach followed by development of four implementation tools and three quality assurance and audit tools.
CONCLUSIONS: The tools developed will aid DCD centres in fulsomely adapting the Canadian Critical Care Society Withdrawal of Life-Sustaining Measures guideline.
Presented here for analysis are distinct and opposed Buddhist perspectives on the issue of withdrawing life support from a brain-dead individual. Of the four views considered, Peter Harvey argues that withdrawal of care and cessation of treatment is justifiable in a Buddhist context. Another perspective (Scott Stonington and Pinit Ratanakul) points out that the Buddhist physician who withdraws a respirator acquires a karmic demerit that can negatively affect this life and future lives. This second view then concludes that Western bioethical resources are inadequate to address the problem of withdrawal of care. In light of these opposing ethical stances grounded in sectarian viewpoints, this presentation will argue that religious ethics should not be considered “irrational” due to their religious foundations. Furthermore, importing local religious concepts can be deemed morally justifiable if doing so endorses the “moral point of view” in its appeal to universalizability, impartial justice, beneficence, and adherence to a set of normative principles. Can ethics criticize religious views that do not conform to the moral point of view or that seem scientifically uninformed, irrational, sectarian, or in some cases even fanatical ? Even though Western concepts for bioethical analysis should not be accepted uncritically, appeal to the moral point of view is necessary for resolving moral problems even if specifics of that perspective may be backgrounded in non-Western contexts.
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: 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.
Background: Withdrawal from renal replacement therapy is common in patients with end-stage kidney disease (ESKD), but end-of-life service planning is challenging without population-specific data. We aimed to describe mortality after treatment withdrawal in Australian and New Zealand ESKD patients and evaluate death-certified causes of death.
Methods: We performed a retrospective cohort study on incident patients with ESKD in Australia, 1980–2013, and New Zealand, 1988–2012, from the Australian and New Zealand Dialysis and Transplant registry. We estimated mortality rates (by age, sex, calendar year and country) and summarized withdrawal-related deaths within 12 months of treatment modality change. Certified causes of death were ascertained from data linkage with the Australian National Death Index and New Zealand Mortality Collection database.
Results: Of 60 823 patients with ESKD, there were 8111 treatment withdrawal deaths and 26 207 other deaths over 381 874 person-years. Withdrawal-related mortality rates were higher in females and older age groups. Rates increased between 1995 and 2013, from 1142 (95% confidence interval 1064–1226) to 2706/100 000 person-years (95% confidence interval 2498–2932), with the greatest increase in 1995–2006. A third of withdrawal deaths occurred within 12 months of treatment modality change. The national death registers reported kidney failure as the underlying cause of death in 20% of withdrawal cases, with other causes including diabetes (21%) and hypertensive disease (7%). Kidney disease was not mentioned for 18% of withdrawal patients.
Conclusions: Treatment withdrawal represents 24% of ESKD deaths and has more than doubled in rate since 1988. Population data may supplement, but not replace, clinical data for end-of-life kidney-related service planning.
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.
Background: Published data and practice recommendations on end-of-life care generally reflect Western practice frameworks; there are limited data on withdrawal of treatment for children in China.
Methods: Withdrawal of treatment for children in the pediatric intensive care unit (PICU) of a regional children’s hospital in eastern China from 2006 to 2017 was studied retrospectively. Withdrawal of treatment was categorized as medical withdrawal or premature withdrawal. The guardian’s self-reported reasons for abandoning the child’s treatment were recorded from 2011.
Results: The incidence of withdrawal of treatment for children in the PICU decreased significantly; for premature withdrawal the 3-year average of 15.1% in 2006–2008 decreased to 1.9% in 2015–2017 (87.4% reduction). The overall incidence of withdrawal of care reduced over the time period, and withdrawal of therapy by guardians was the main contributor to the overall reduction. The median age of children for whom treatment was withdrawn increased from 14.5 months (interquartile range: 4.0–72.0) in 2006 to 40.5 months (interquartile range: 8.0–99.0) in 2017. Among the reasons given by guardians of children whose treatment was withdrawn in 2011–2017, “illness is too severe” ranked first, accounting for 66.3%, followed by “condition has been improved” (20.9%). Only a few guardians ascribed treatment withdrawal to economic reasons.
Conclusions: The frequency of withdrawal of medical therapy has changed over time in this children’s hospital PICU, and parental decision-making has been a large part of the change.
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.
Durant la pandémie Coronavirus Disease 19, certains aspects habituels des retraits thérapeutiques ont dû être adaptés. L’accompagnement des patients et de leurs proches au décès ainsi que le soutien aux équipes de soins ont amené à résoudre de nouveaux défis. L’intégration des soins palliatifs dans les processus de retraits thérapeutiques aux soins intensifs a pu être mise en œuvre durant cette crise sanitaire. La formation continue aux questions en lien avec la fin de vie et l’établissement de plans de collaboration avec les soins palliatifs est essentielle aux soins intensifs.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
BACKGROUND: During the terminal withdrawal of life-sustaining measures for intensive care patients, the removal of respiratory support remains an ambiguous practice. Globally, perceptions and experiences of best practice vary due to the limited evidence in this area.
AIM: To identify, appraise and synthesise the latest evidence around terminal withdrawal of mechanical ventilation in adult intensive care units specific to perceptions, experiences and practices.
DESIGN: Mixed methods systematic review and narrative synthesis. A review protocol was registered on PROSPERO (CRD42018086495).
DATA SOURCES: Four electronic databases were systematically searched (Medline, Embase, CENTRAL and CINAHL). Obtained articles published between January 2008 and January 2020 were screened for eligibility. All included papers were appraised using relevant appraisal tools.
RESULTS: Twenty-five papers were included in the review. Findings from the included papers were synthesised into four themes: 'clinicians' perceptions and practices'; 'time to death and predictors'; 'analgesia and sedation practices'; 'physiological and psychological impact'.
CONCLUSIONS: Perceptions, experiences and practices of terminal withdrawal of mechanical ventilation vary significantly across the globe. Current knowledge highlights that the time to death after withdrawal of mechanical ventilation is very short. Predictors for shorter duration could be considered by clinicians and guide the choice of pharmacological interventions to address distressing symptoms that patients may experience. Clinicians ought to prepare patients, families and relatives for the withdrawal process and the expected progression and provide them with immediate and long-term support following withdrawal. Further research is needed to improve current evidence and better inform practice guidelines.
Purpose: As many as 20% of oncology patients receive chemotherapy in the last 14 days of their lives. This study characterized conversations between patients and cancer clinicians on chemotherapy cessation in the setting of advanced cancer.
Methods: This 3-site study captured real-time, audio-recorded interviews between oncology clinicians and patients with cancer during actual clinic visits. Audio-recordings were reviewed for discussion of chemotherapy cessation and were analyzed qualitatively.
Results: Among 525 recordings, 14 focused on stopping chemotherapy; 14 patients participated with 11 different clinicians. Two types of nonmutually exclusive conversation elements emerged: direct and specific elements that described an absence of effective therapeutic options and indirect elements. An example of a direct element is as follows: “…You know this is…always really tough…But I—I think that you may need more help…I think we’re close to stopping chemotherapy…And hospice is really helpful to have in place…” In contrast, the second conversation element was more convoluted: “…transplant is not an option and surgery is not an option…The options…are taking a pill…It doesn’t shrink the tumor…It may help you live a little longer. But I’m worried if [you] had the pill, it’s still a therapy and it still has side effects. I [am] worried if I give it to you now, that you’re so weak, it will make you worse.” No relationship seemed apparent between conversation elements and chemotherapy cessation.
Conclusions: Conversations on chemotherapy cessation are complex; multiple factors appear to drive the decision to stop.
Objective: Mechanical ventilation, a measure of life-sustaining treatment (LST), may not be helpful and can be devastating for patients with terminal illness. We explored the effects of demographic characteristics, attitude, subjective norms, and perceived behavioral control on the behavioral intentions of primary caregivers to withdraw LST of long-term ventilator-dependent patients.
Methods: Primary caregivers of ventilator-dependent patients in the respiratory care units of six hospitals participated in the study. A cross-sectional design including the domains of attitude, subjective norms, perceived behavioral control, and behavioral intention was adopted.
Results: Valid data for 99 participants were analyzed using logistic regression. Religious belief, a spousal relationship with the patient, item 5 in subjective norms, and item 5 in perceived behavioral control positively influenced the intention to withdraw patient LST.
Conclusions: Religious beliefs, a spousal relationship, perceived behavioral control (confidence in relieving patient suffering), and the opportunity of current favorable subjective norms are major determinants of the intention to withdraw patients’ LST.
Practice Implications: Shared decision-making with the kin and primary caregivers of long-term ventilator-dependent patients at the end of life is crucial.
Background: Data are scarce on the withdrawal of life-sustaining therapies and limitation of care orders (LCOs) during physician-staffed Helicopter Emergency Medical Service (HEMS) missions. We investigated LCOs and the quality of information available when physicians made treatment decisions in prehospital care.
Methods: A prospective, nationwide, multicentre study including all Finnish physician-staffed HEMS bases during a six-month study period. All HEMS missions where a patient had pre-existing LCOs and/or a new LCO were included.
Results: There were 335 missions with LCOs, which represented 5.7% of all HEMS missions (n=5,895). There were 181 missions with pre-existing LCOs, and a total of 170 new LCOs were issued. Usually, the pre-existing LCO was a do not attempt cardiopulmonary resuscitation order only (n=133, 74%). The most frequent new LCO was ‘termination of cardiopulmonary resuscitation’ only (n=61, 36%), while ‘no intensive care’ combined with some other LCO was almost as common (n=54, 32%). When issuing a new LCO for patients who did not have any preceding LCOs (n=153), in every other (49%) case the physicians thought that the patient should have already had an LCO. When the physician made treatment decisions, patients’ background information from on-scene paramedics was available in 260 (78%) of the LCO missions, while patients’ medical records were available in 67 (20%) of the missions.
Conclusion: Making LCOs or treating patients with pre-existing LCOs is an integral part of HEMS physicians’ work, with every twentieth mission involving LCO patients. The new LCOs mostly concerned withholding or withdrawal of cardiopulmonary resuscitation and intensive care.
Le développement exponentiel de nouvelles techniques dans le domaine médical s’applique aussi aux patients en fin de vie, opérant un changement dans les mentalités. La fréquence et la manière de mourir des enfants se sont modifiées tout comme la représentation que l’on s’en fait. L’objectif de notre étude était d’évaluer les enjeux et la représentation de la mort du nouveau-né et de l’enfant dans la société française contemporaine ainsi que les déterminants socioculturels pouvant les conditionner.
La question de la décision médicale en néonatologie est complexe : en raison de de la place particulière qu’ont les parents vis-à-vis du nouveau-né. Elle présente un dilemme souvent discuté dans la littérature. Ce témoignage vise à donner des arguments en faveur de la position selon laquelle, dans les décisions médicales de fin de vie, ce sont les parents qui doivent: les parents doivent pouvoir, s’ils le souhaitent, porter la responsabilité de la décision.
There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.