A qualitative study on redefining normality in relatives of patients with advanced cancer

OBJECTIVE: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.METHODS: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.RESULTS: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.CONCLUSION: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.</p

A qualitative study on redefining normality in relatives of patients with advanced cancer

OBJECTIVE: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.METHODS: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements.RESULTS: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies.CONCLUSION: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.</p

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child’s future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents n

Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians.What is Known:• Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach.• Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning.What is New:• When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past.• There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings

Unmet care needs of patients with advanced cancer and their relatives:multicentre observational study

Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. Methods: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. Results: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of â € psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was â € worrying about the future of my loved ones' (22.0%); for relatives this was â € fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. Conclusions: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.</p

Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment

Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life

Changing Practices in the Use of Continuous Sedation at the End of Life: A Systematic Review of the Literature

Context: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients. Objective: To gain insight in developments in the use of CSD in various countries and subpopulations. Methods: We performed a search of the literature published between January 2000 and April 2020, in PubMed, Embase, CINAHL, PsycInfo, and the Cochrane Library by using the Preferred reporting items for systematic review and meta-analysis protocols guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death. Results: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on frequencies of CSD in deceased persons varied from 3% in Denmark in 2001 to 18% in The Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years, more studies reported on the use of CSD for nonphysical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients from their families. Conclusions: The frequency of CSD seems to increase over time, possibly partly because of an extension of indications for sedation, from mainly physical symptoms to also nonphysical symptoms

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study

BACKGROUND: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. AIM: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. DESIGN: Qualitative case studies using interviews. SETTING/PARTICIPANTS: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. RESULTS: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. CONCLUSION: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care

How can advance care planning support hope in patients with advanced cancer and their families: a qualitative study as part of the international ACTION trial

Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice