End Of Life Decisions Research Articles

Anxiety and Depression in Metastatic Cancer: A Critical Review of Negative Impacts on Advance Care Planning and End-of-Life Decision Making With Practical Recommendations.

Providers treating adults with advanced cancer increasingly seek to engage patients and surrogates in advance care planning (ACP) and end-of-life (EOL) decision making; however, anxiety and depression may interfere with engagement. The intersection of these two key phenomena is examined among patients with metastatic cancer and their surrogates: the need to prepare for and engage in ACP and EOL decision making and the high prevalence of anxiety and depression. Using a critical review framework, we examine the specific ways that anxiety and depression are likely to affect both ACP and EOL decision making. The review indicates that depression is associated with reduced compliance with treatment recommendations, and high anxiety may result in avoidance of difficult discussions involved in ACP and EOL decision making. Depression and anxiety are associated with increased decisional regret in the context of cancer treatment decision making, as well as a preference for passive (not active) decision making in an intensive care unit setting. Anxiety about death in patients with advanced cancer is associated with lower rates of completion of an advance directive or discussion of EOL wishes with the oncologist. Patients with advanced cancer and elevated anxiety report higher discordance between wanted versus received life-sustaining treatments, less trust in their physicians, and less comprehension of the information communicated by their physicians. Anxiety and depression are commonly elevated among adults with advanced cancer and health care surrogates, and can result in less engagement and satisfaction with ACP, cancer treatment, and EOL decisions. We offer practical strategies and sample scripts for oncology care providers to use to reduce the effects of anxiety and depression in these contexts.

Handling End-of-Life Situations in Small Animal Practice: What Strategies do Veterinarians Contemplate During their Decision-Making Process?

ABSTRACT This study researched end-of-life (EoL) decision-making processes in small animal practices in the Netherlands, focusing on strategies veterinarians contemplate during this process. Fourteen veterinarians were interviewed about animal end-of-life decision-making. The results of these interviews show that the decision-making process consists of three steps. The first step is to assess the animal’s health and welfare. During the second step, veterinarians consider the position of the owner. Based on steps 1 and 2, veterinarians decide in step 3 whether their advice is to a) euthanize or b) contemplate one or more strategies to come to a decision or potentially alter the decision. These results can support members of the veterinary profession to reflect on their decision-making process. If veterinarians know what strategies their peers use to deal with EoL situations, this can help to reduce the stress they experience in such situations. In addition, veterinarians may find inspiration for new strategies in the study results. For the veterinary profession itself, the current results can be used as a starting point for describing best practices for EoL decision-making in small animal practice.

Advanced care planing and end of life decisions - the geriatricians' view

Medical progress and the increasing desire for self-determination, even in the most difficult life situations, as well as the associated increasing possibilities of influencing life and dying lead to possibilities but also obligations for individual treatment design. Especially at the end of life, the desire for provision is great and many decisions need to be made in advance or by proxy. In daily dealings with sick or seriously ill people at the end of their lives, it is very helpful if appropriate advance directives have been made and the patient's wishes can be implemented simply and clearly. With the possibility of advance planning for the end of life (Advance Care Planning (ACP)), there is a precautionary and planning concept that will hopefully be used more and more in the future.

Attitudes and Perceptions on Advance Care Planning Among Chinese-Speaking Older Australians.

Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required. This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians. A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically. Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs. Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community.

A Survey for Assessment of Practical Aspects of End-of-life Practices across Indian Intensive Care Units.

The end-of-life (EOL) decisions continue to be debated for their moral and legal standing. The acceptance of these decisions varies, based upon the perceptions and personal choices of the intensivists. An online questionnaire-based survey was designed and circulated among the practicing intensivists via Indian Society of Critical Care Medicine (ISCCM) e-mail. Out of 200 responses, 165 (82.5%) affirmed that EOL decisions are routinely undertaken in their intensive care units. The most prevalent reasons expressed for avoidance of EOL decisions are moral and ethical dilemmas and fear of litigation. There is notable variability in the practice of withholding (47.7%) vs withdrawal (3.5%) of therapies. A good proportion of intensivists follow do-not-intubate (91%) and do-not-resuscitate (86%) orders, whereas only 18% affirmed to be practicing terminal extubation. About 93% of the respondents acknowledged the use of monitoring toward the EOL, and 49% reported the use of preformatted documents. A meager 2% admitted to facing a medicolegal issue after taking an EOL decision. The survey establishes a general acceptance among the Indian intensivists regarding providing compassionate care to terminally ill patients, especially toward the EOL. The pattern of responses, however, indicates significant dilemmas and hesitancy with regard to the decision-making process. Kumar A, Sinha S, Mani RK. A Survey for Assessment of Practical Aspects of End-of-life Practices across Indian Intensive Care Units. Indian J Crit Care Med 2023;27(8):531-536.

Comparison of the end-of-life decisions of patients with hospital-acquired pneumonia after the enforcement of the life-sustaining treatment decision act in Korea

BackgroundAlthough the Life-Sustaining Treatment (LST) Decision Act was enforced in 2018 in Korea, data on whether it is well established in actual clinical settings are limited. Hospital-acquired pneumonia (HAP) is a common nosocomial infection with high mortality. However, there are limited data on the end-of-life (EOL) decision of patients with HAP. Therefore, we aimed to examine clinical characteristics and outcomes according to the EOL decision for patients with HAP.MethodsThis multicenter study enrolled patients with HAP at 16 referral hospitals retrospectively from January to December 2019. EOL decisions included do-not-resuscitate (DNR), withholding of LST, and withdrawal of LST. Descriptive and Kaplan–Meier curve analyses for survival were performed.ResultsOf 1,131 patients with HAP, 283 deceased patients with EOL decisions (105 cases of DNR, 108 cases of withholding of LST, and 70 cases of withdrawal of LST) were analyzed. The median age was 74 (IQR 63–81) years. The prevalence of solid malignant tumors was high (32.4% vs. 46.3% vs. 54.3%, P = 0.011), and the ICU admission rate was lower (42.9% vs. 35.2% vs. 24.3%, P = 0.042) in the withdrawal group. The prevalence of multidrug-resistant pathogens, impaired consciousness, and cough was significantly lower in the withdrawal group. Kaplan–Meier curve analysis revealed that 30-day and 60-day survival rates were higher in the withdrawal group than in the DNR and withholding groups (log-rank P = 0.021 and 0.018). The survival of the withdrawal group was markedly decreased after 40 days; thus, the withdrawal decision was made around this time. Among patients aged below 80 years, the rates of EOL decisions were not different (P = 0.430); however, mong patients aged over 80 years, the rate of withdrawal was significantly lower than that of DNR and withholding (P = 0.001).ConclusionsAfter the LST Decision Act was enforced in Korea, a DNR order was still common in EOL decisions. Baseline characteristics and outcomes were similar between the DNR and withholding groups; however, differences were observed in the withdrawal group. Withdrawal decisions seemed to be made at the late stage of dying. Therefore, advance care planning for patients with HAP is needed.

Trust as a Central Factor in Hospice Enrollment Disparities Among Ethnic and Racial Minority Patients: A Qualitative Study of Interrelated and Compounding Factors Impacting Trust.

Background: Disparities in end-of-life (EOL) care remain among ethnic/racial minority populations. Choosing hospice care in the United States depends on goals-of-care discussions founded on trust. While studies examine hospice enrollment disparities and others explore trust in hospice settings in general, very few explicitly examine the role of trust in hospice enrollment disparities. Objectives: To explore factors impacting trust and how these might contribute to disparities in hospice enrollment. Design: A qualitative, individual interview study, based on grounded theory. Setting/Subjects: Setting: Rhode Island, USA. Participants: Multiple stakeholders in EOL care, with diverse professional and personal backgrounds. Measurements: In-depth semistructured individual interviews were audio-recorded and transcribed as part of a broader study of hospice enrollment barriers in diverse patients. Analysis: Five researchers did a secondary data analysis, focusing on trust as the central phenomenon of interest. Researchers independently analyzed transcripts, then held iterative group analysis meetings until they reached consensus regarding themes, subthemes, and relationships. Results: Twenty-two participants included five physicians, five nurses, three social workers, two chaplains, one nursing assistant, three administrators, and three patient caregivers/family. Interviews reveal that trust is multidimensional, involving personal- and systems-level trust, and both locus and degree of trust. Factors impacting trust include: fear; communication/relationships; knowledge of hospice; religious/spiritual beliefs; language; and cultural beliefs/experiences. While some are common across groups, several are more prevalent in minority populations. These factors appear to interact in complex ways, unique to individual patients/families, compounding their impact on trust. Conclusions: While gaining patient/family trust regarding EOL decision making is challenging across all groups, minority patients often experience additional compounding factors impacting trust building. More research is needed to mitigate the negative ways these interacting factors impact trust.

Polarization in public attitudes toward end-of-life decisions in Israel - A cross-sectional study.

End-of-life (EoL) processes are a complex socio-normative and ethical phenomenon. This study aimed to generate a database of public opinion in Israel concerning EoL processes and decisions and to identify differences in attitudes across subgroups in the population, particularly based on experience as a family caregiver of a dying patient. This cross-sectional study was performed in late March 2022. The study utilized an online sample of 605 adults over the age of 50 including those who accompanied a loved one to their death in the last 3 years. Participants were requested to provide their opinions and attitudes on several aspects of EoL decisions, including truth-telling, medically assisted dying, EoL procedures, pre-death actions, and family caregivers' engagement. While only 27% and ∼30% of participants support artificial respiration or feeding (respectively) of terminally ill patients, 66% support analgesic treatment, even at the risk of shortening life. The data show an association between religiosity and agreement with life-extending procedures. For example, while 83% of seculars support medically assisted dying, only 59% and 26% of traditional and religious respondents support it. However, no statistically significant differences were observed in support of family involvement in EoL process in any sociodemographic variable. The results of this study suggest that the Israeli public is relatively polarized on several issues about EoL processes, specifically patient autonomy and medically assisted dying. Yet, at the same time, there is a consensus among the Israeli public about certain EoL elements, particularly the importance of family caregivers in the EoL decision-making process.

P.143 Exploring end-of-life decision making and perspectives on Medical Assistance in Dying through the eyes of individuals living with cervical spinal cord injuries in Nova Scotia

Background: Individuals with spinal cord injuries (SCI) are invariably faced with decisions around management of their injury; from life prolonging to palliating interventions. End-of-life (EOL) decision-making has recently come to include conversations around Medical Assistance in Dying (MAID), as legislation changes have expanded access. The intersection between SCI and MAID, and other EOL decision-making has yet to be explored. We sought to discuss awareness and perspectives on MAID and EOL decision-making. Methods: We conducted hour-long semi-structured interviews with 15 individuals living with cervical SCI. Interviews took place over the telephone or virtually, and transcripts were analyzed using an iterative coding process and thematic analysis. Results: There was a global lack of awareness of options, that changed with time as participants assumed more independent roles in decision making. Participants possessed general awareness of MAID, but variable understanding of who legislation applies to. The way individuals with SCI could interact with MAID legislation brought forth interesting discussions around bodily autonomy and self-determination. Some voiced their own desire initially for MAID, while others vacillated or were more strongly opposed. Conclusions: This study emphasizes the importance of engaging with difficult conversations, and striking the balance of respecting autonomy and self-determination, within the constraints of each individual’s situation.

Assessment of Feelings Towards Advanced Care Planning in the Latino Community.

Previous studies have noted that participation in advanced care planning (ACP) and end-of-life (EOL) discussions remain low among Latino communities. Various studies have found that interventions within Latino communities can positively improve engagement in ACP, however, minimal research exists regarding patient satisfaction of ACP discussions with healthcare providers outside of preorganized educational interventions. Our study aims to understand how conversations about ACP are perceived by Latino patients in a primary care setting. Subjects were identified from the institution's family medicine clinic from October 2021 to October 2022. Participants were those over the age of 50 who identified as Latino and were available at the clinic on the day of survey administration. An 8-question, 5-point, Likert scale survey assessed perceptions about ACP planning and gauged satisfaction of conversations with health care providers. The survey concluded with a multiple-choice question inquiring about individuals whom patients have spoken to regarding ACP/EOL wishes. Survey data was gathered through Qualtrics. Of the 33 patients, the majority have at least somewhat thought about their EOL wishes (avg = 3.48/5). Most usually felt they were given enough time with their doctor (avg = 4.12/5) and comfortable speaking about ACP and EOL decisions (avg = 4.55/5). Generally, participants felt somewhat happy with how their doctor has spoken about ACP/EOL care (avg = 3.24/5). However, patients only felt a little to somewhat satisfied with the explanation of ACP/EOL from providers (avg = 2.82/5) and a little to somewhat confident in having the proper forms in place (avg = 2.76/5). Religious officials were a little to somewhat important to these conversations (avg = 2.55/5). Overall, patients have discussed ACP more frequently with family members and friends than health care providers, lawyers, or religious leaders. The initial data demonstrates that many Latino patients are engaging in ACP conversations, both with healthcare providers and loved ones. Patients largely feel comfortable discussing EOL wishes with their doctor suggesting a trustful relationship. However, patients are only somewhat happy with these ACP conversations. Our study highlights a need for enhanced ACP education to improve satisfaction and confidence in formal documentation. Physicians should continue to engage and individualize ACP discussions to increase EOL preparedness among Latino patients.

Do nurses participate in end-of-life decision making?

To explore how Jordanian nurses participate in the end-of-life (EoL) decision-making process. Interviews with 10 patients and family caregivers, and focus group discussions with seven healthcare professionals (HCPs), were conducted. Interviews were audio-recorded, transcribed and analysed following inductive thematic analysis. The participants agreed that nurses are not fully engaged and did not have a direct role in the EoL decision-making process. However, the participants highlighted that 'nurses bridge the gaps in the decision-making process', where nurses act as mediators to facilitate the decision-making process. Lastly, nurses were viewed as 'nurturers and supporters during the journey of the patient's illness'; they were always available to answer their questions, offer help and advise when necessary during palliative referral and throughout the illness. Although nurses did not directly participate in EoL decisions, they have several vital contributions that need to be rearranged into structured decisional coaching.

160 United States equine community: Information sources used and equine health-related issues considered most important

To provide the most useful resources, equine extension programs must stay up-to-date with the equine communities’ most pressing needs and interests. To obtain detailed information on topics that concern the equine community, and to learn more about its demographics, extension programs often conduct so called “needs assessment surveys.” The Rutgers Equine Science Center recently conducted such a survey with the objectives to: 1) determine what equine information sources are most used; 2) assess the degree of trust in these sources; and 3) identify which equine health and well-being related issues are considered most important by the equine community. The national survey was managed by the platform Qualtrics and was available online between October 10th, and November 1st, 2022. The survey was open to all individuals involved in the equine community (e.g., by riding horses, running a horse-related business, etc.). Responses were recorded anonymously, and survey questions were of single or multiple-choice type. Of 494 received surveys, 493 were eligible for analysis. Data were analyzed descriptively with frequency counts expressed as percentages. The 5 most frequently used sources of equine-related information were: 1) personal knowledge (95.7%); 2) veterinarian (93.7%); 3) farrier (83.7%); 4)horse-related websites (77.2%); 5) other horse owners (72.6%) (n = 492). Of these 5, veterinarians were most frequently considered a highly trusted source of information (64.2%), followed by personal knowledge (34.9%), farriers (32.7%), horse-related websites (2.4%), and other owners (1.3%) (n = 455). The top 5 equine-health and well-being related issues considered to be extremely important were: 1) lameness/soundness (76.9%); 2) nutrition (64.1%); 3) care of older horses (55.7%); 4) disease (49.5%); and 5) end of life decision (44.5%) (n = 485). In conclusion, veterinarians and personal knowledge appear to be the most frequently used sources of equine-related information, with veterinarians also being considered a highly trusted source by most respondents. Two of the top 5 health and well-being related issues pertained predominantly to elderly horses (i.e., care of older horses and end of life decisions), suggesting particular concern for this age group. As found in previous needs assessment surveys, lameness/soundness and nutrition were considered extremely important issues by most survey participants.

Exploring clinicians' decision-making processes about end-of-life care after burns: A qualitative interview study.

Little is known about treatment decision-making experiences and how/why particular attitudes exist amongst specialist burn clinicians when faced with patients with potentially non-survivable burn injuries. This exploratory qualitative study aimed to understand clinicians' decision-making processes regarding end-of-life (EoL) care after a severe and potentially non-survivable burn injury. Eleven clinicians experienced in EoL decision-making were interviewed via telephone or video conferencing in June-August 2021. A thematic analysis was undertaken using a framework approach. Decision-making about initiating EoL care was described as complex and multifactorial. On occasions when people presented with 'unsurvivable' injuries, decision-making was clear. Most clinicians used a multidisciplinary team approach to initiate EoL; variations existed on which professions were included in the decision-making process. Many clinicians reported using protocols or guidelines that could be personalised to each patient. The use of pathways/protocols might explain why clinicians did not report routine involvement of palliative care clinicians in EoL discussions. The process of EoL decision-making for a patient with a potentially non-survivable burn injury was layered, complex, and tailored. Processes and approaches varied, although most used protocols to guide EoL decisions. Despite the reported complexity of EoL decision-making, palliative care teams were rarely involved or consulted.

Advance Care Planning Among Patients With Amyotrophic Lateral Sclerosis: Patient Perspectives on Goals of Care Conversations.

Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS. We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices. 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR: .6 - 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τb = .23, P = .14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD. In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes.

Considering life and death: a qualitative vignette study among farm animal veterinarians in the Netherlands on considerations in end-of-life decision-making

Farm animal veterinarians are frequently involved in animals’ end-of-life (EoL) situations. Existing literature found that the decision-making process to end an animal’s life can be experienced as complex and stressful by veterinarians. The complexity of the process may find its origin in the multiple medical and non-medical aspects that veterinarians consider coming to their decision. Although research provides insight into what considerations are at stake, the literature does not provide information on how these aspects affect the decision-making process. This study explores how different considerations affect the decision-making process of farm animal veterinarians in EoL situations. Semi-structured interviews were conducted with nineteen farm animal veterinarians in the Netherlands. During the interviews, case scenarios in the form of vignettes were used to identify and explore the considerations that play a role for these veterinarians in EoL decision-making. Based on the analysis of the interview data, we discovered that farm animal veterinarians consider EoL situations using one of three identified frames: function, prospect, and duty. These frames illustrate one’s perspective on the interplay of medical and non-medical aspects. Whereas veterinarians for whom the function frame is dominant focus on the human-centred function that an animal fulfils, veterinarians for whom the prospect frame is dominant focus on an animal’s prospects based on the animal’s living conditions and the influence of the owner. Veterinarians for whom the duty frame is dominant focus on the owner’s legal position towards the animal, illustrating a clear distinction between the veterinarian’s professional duties towards the animal and the duty of care of the animal owner. As such, the key contributions of this study are the discovery of the importance of the interplay between considerations in EoL decision-making and the frame-specific approach of veterinarians. The identified frames may relate to the coping strategies of veterinarians dealing with the complexity of EoL situations.

Filial Piety and U.S. Family Law: How Cultural Values Influence Caregiving, End-of-Life, and Estate Planning Decisions in Asian American Families

Due to centuries of anti-Asian discrimination in U.S. immigration policy and in its court system, many Asian Americans have migrated relatively recently. As a result, many Americans of East and South Asian descent maintain common cultural values such as respect for elders, filial piety, and community wellbeing. This Article examines how these values affect Asian Americans’ approach to decisions regarding the elderly, in particular caregiving, end of life decisions, and estate planning. Finally, the Article proposes suggestions for future research to improve outcomes and meet the legal needs of a growing, aging population.

A qualitative exploration of goals-of-care discussions with seriously ill patients in Jordan.

This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan. This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs. Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity. Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

Ethical Implications of Nutrition Therapy at the End of Life.

Provide an evidence-based resource to inform ethically sound recommendations regarding end of life nutrition therapy. • Some patients with a reasonable performance status can temporarily benefit from medically administered nutrition and hydration(MANH) at the end of life. • MANH is contraindicated in advanced dementia. • MANH eventually becomes nonbeneficial or harmful in terms of survival, function, and comfort for all patients at end of life. • Shared decision-making is a practice based on relational autonomy, and the ethical gold standard in end of life decisions. A treatment should be offered if there is expectation of benefit, but clinicians are not obligated to offer non-beneficial treatments. A decision to proceed or not should be based on the patient's values and preferences, a discussion of all potential outcomes, prognosis for given outcomes taking into consideration disease trajectory and functional status, and physician guidance provided in the form of a recommendation.

Role of patients’ family members in end-of-life communication: an integrative review

ObjectivesTo synthesise empirical findings on the role of family in end-of-life (EOL) communication and to identify the communicative practices that are essential for EOL decision-making in family-oriented cultures.SettingThe EOL communication...

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making.

Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.