Natasja Raijmakers

Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects

BACKGROUND The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients. MATERIALS AND METHODS We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included. RESULTS Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. CONCLUSIONS Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care.

Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: A mixed methods approach

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64–88%) and the absence of a requirement concerning life expectancy (48–71%). PAS was thought acceptable by 24–39% of respondents for patients requesting it because of mental suffering due to loss of control, chronic depression or early dementia. In the case of severe dementia, one third of physicians, 58% of nurses and 77% of the general public agreed with performing euthanasia based on an advance directive. Interviewees illustrated these findings and supported the Act. Conclusions: Health care professionals and the general public mostly support the legal requirements for euthanasia and PAS. The law permits euthanasia or PAS for mental suffering but this possibility is not widely endorsed. The general public is more liberal towards euthanasia for advanced dementia than health care professionals. We conclude that there is ample support for the law after eight years of legal euthanasia.

Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.

BACKGROUND Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life. METHODS To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked. RESULTS In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patients death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life. CONCLUSION Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

Issues and needs in end-of-life decision making : An international modified Delphi study

Background: end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients’ comfort in the last days of life. Aim: the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions. Participants: 90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence. Results: experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives’ wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches. Conclusions: palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.

Variation in attitudes towards artificial hydration at the end of life: a systematic literature review.

Purpose of reviewArtificial hydration in end-of-life care is an important and emotive topic that frequently raises concerns from patients, relatives and healthcare professionals (HCPs). The aim of this review was to give an overview of currently available evidence around opinions and attitudes towards artificial hydration at the end of life. Recent findingIn total 11 studies reported on opinions towards providing artificial hydration, nine studies reported on attitudes towards the effect of artificial hydration on quality-of-life and four studies towards its effect on survival. Reported percentages of respondents in favour of providing artificial hydration at the end of life varied from 22 to 100% and for nonprovision from 0 to 75%. One-third of the general public has been found to think that artificial hydration improves comfort, while among patients a majority feels it can have a physical or psychological benefit. HCPs were found to be less optimistic: 1–43% thought patients benefit from artificial hydration at the end of life. HCPs mostly agree artificial hydration does not prolong survival, although up to 89% of patients expect it does. SummaryOpinions and attitudes towards the use of artificial hydration at the end of life vary. Communication of this imperative topic in end-of-life care is important for better care and should be research-based.

Assistance in dying for older people without a serious medical condition who have a wish to die: a national cross-sectional survey

Background The Dutch euthanasia law regulates physician assistance in dying for patients who are suffering unbearably from a medical condition. We studied the attitudes of the Dutch population to assistance in dying for older persons who have a wish to die without the presence of a serious medical condition. Methods A cross-sectional survey was conducted among a random sample of the Dutch public (response rate 78%, n=1960), using statements and vignettes about attitudes to assistance in dying for older persons who are tired of living. Results A minority of 26% agreed with a vignette in which a physician warrants the request for physician-assisted suicide of an older person who is tired of living without having a serious medical condition. Furthermore, 21% agreed with the statement ‘In my opinion euthanasia should be allowed for persons who are tired of living without having a serious disease’. People supporting euthanasia for older persons who are tired of living were more likely than opponents to be highly educated (OR 1.6; 95% CI 1.1 to 2.3), to be non-religious (OR 1.7; 95% CI 1.3 to 2.3), to have little trust in physicians (OR 1.6; 95% CI 1.2 to 2.2), and to prefer to make their own healthcare decisions (OR 1.7; 95% CI 1.3 to 2.3). Conclusions Although it is lower than the level of support for assistance in dying for patients whose suffering is rooted in a serious medical condition, our finding that a substantial minority of the general public supports physician assistance in dying for older people who are tired of living implies that this topic may need to be taken seriously in the debate about end-of-life decision-making.

Bereaved relatives’ perspectives of the patient’s oral intake towards the end of life: A qualitative study

Background: Patients approaching death often have a decreasing oral intake, which can be distressing for relatives. Little is known about the relatives’ experiences with and perceptions of oral intake at the end of life. Aim: This study aims to contribute to a more thorough understanding of relatives’ concerns regarding decreased oral intake of the patient at the end of life. Design: Qualitative interview study: semi-structured interviews were transcribed verbatim and analysed using qualitative content analysis. Setting/participants: Twenty-three bereaved relatives of patients who had been referred to a New Zealand palliative care service were interviewed. Results: All relatives experienced significant changes in patients’ oral intake at the end of life. Oral intake towards the end of life was considered important and is perceived as meaningful by relatives in different ways, such as nutritional value, enjoyment, social time, daily routine and a way of caring. Relatives responded differently to decreasing oral intake; some accepted it as inherent to the dying process, others continued efforts to support the patient’s oral intake. Some relatives perceived decreasing oral intake as the patient’s choice, and some viewed maintaining oral intake as part of the battle against the disease. Relatives recalled limited communication with health-care professionals concerning oral intake at the end of life. Conclusions: This study revealed the complexity of meaning relatives’ experiences with dying patients’ decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.

Involvement of the Dutch General Population in Advance Care Planning: A Cross-Sectional Survey

BACKGROUND AND OBJECTIVE Advance care planning (ACP) is a process of communication among patients, health care providers, and relatives regarding end-of-life care. The aim of our study was to determine if a representative sample of the Dutch general public is currently involved or is inclined to be engaged in ACP, and to delineate the factors associated with greater engagement. METHODS An online questionnaire was completed by a representative sample of the Dutch general public, derived from an established Internet panel (CentERdata, University of Tilburg, The Netherlands). RESULTS AND CONCLUSIONS Although the majority of the Dutch population seems open to discussions about end-of-life care, our study revealed that discussions with physicians are exceedingly rare. To improve ACP as a joint process among patients, relatives, and physicians, the general publics awareness of the importance of end-of-life discussions with their physicians needs to be increased and physicians need to play a more active role by initiating conversations and dialogue regarding end-of-life care.

Barriers and facilitators to implementation of the Liverpool Care Pathway in the Netherlands: a qualitative study

Objectives The Liverpool Care Pathway (LCP) is a quality instrument for the dying patient. This study evaluates barriers and facilitators to its implementation in the Netherlands from the perspective of key stakeholders, to inform future implementation processes. Methods An interview study was conducted among 28 stakeholders involved in implementation of the LCP in the Netherlands, followed by a consecutive focus group with 8 interviewees to discuss and validate the findings of the interview study. Interviews were conducted by telephone and the notes taken during the interviews and focus group were transcribed into non-verbatim transcripts. Data collected during the interviews and focus group were evaluated using thematic analysis. Results According to the stakeholders, a context analysis prior to implementation was useful to find the appropriate orientation to adequately motivate healthcare professionals as well as management. The main contributing factors were the quality of the LCP (including its evidence-based character and completeness), and that it fitted the needs of healthcare professionals. During the implementation phase, a multidisciplinary project team, competent support and continuous monitoring were identified as important facilitators. Furthermore, for successful implementation, a facilitator working in liaison with others was helpful. To guarantee sustainability of the use of the LCP, it was important to disentangle tasks from the project leader and formally integrate these into the quality systems of the organisation. Conclusions The Dutch experience with large-scale implementation of the LCP has identified important barriers and facilitators to the implementation of a quality instrument within palliative care. To successfully implement such a promising instrument, liaison with others is important. The sense of being part of a process of improvement is valuable, while consolidation of this idea contributes to successful implementation.

Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public

BackgroundThe Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive (AED) when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.MethodsIn this qualitative study, 16 medical specialists, 19 general practitioners, 16 elderly physicians and 16 members of the general public were interviewed and asked for their opinions about a vignette on euthanasia based on an AED in a patient with advanced dementia.ResultsMembers of the general public perceived advanced dementia as a debilitating and degrading disease. Physicians emphasized the need for direct communication with the patient when making decisions about euthanasia. Respondent from both groups acknowledged difficulties in the assessment of patients’ autonomous wishes and the unbearableness of their suffering.ConclusionLegally, an AED may replace direct communication with patients about their request for euthanasia. In practice, physicians are reluctant to forego adequate verbal communication with the patient because they wish to verify the voluntariness of patients’ request and the unbearableness of suffering. For this reason, the applicability of AEDs in advanced dementia seems limited.