"When death knocks at the door of our ward, we do not easily open the door", an intensivist once said. In the intensive care unit (ICU) and emergency department, care is strongly focused on cure and resuscitation. Notwithstanding the technological progress made in intensive and emergency medecine, a substantial number of the partients admitted to the ICU cannot be saved.
Compared with clear-cut loss by death, ambiguous loss is defined as a loss that is not definite because the person is missing or mentally absent but physically present (e.g., through Alzheimer's disease). We expected the ambiguity of loss to show in psychologically more compromised loss memories and self-defining memories, but not in autobiographical memories in general. Thirty Chinese adults who had lost a parent through death, thirty whose parent had gone missing, and thirty who cared for a demented parent narrated their loss experiences and memories of sad and turning-point events as well as self-defining memories. Individuals with ambiguous loss narrated the loss and a self-defining memory with more contamination and fewer redemption sequences, and only the loss memory with fewer themes of agency and communion than individuals with definite loss, but not in memories of sad and turning point events. Effects of ambiguity of loss were independent of prolonged grief, which in turn independently predicted some of these effects. Thus the ambiguous quality of loss predicts effects on loss memories and self-defining memories independently of psychiatric symptoms.
OBJECTIVE: The role of aromatherapy in supportive symptom management for pediatric patients receiving palliative care has been underexplored. This pilot study aimed to measure the impact of aromatherapy using validated child-reported nausea, pain, and mood scales 5 minutes and 60 minutes after aromatherapy exposure.
METHODS: The 3 intervention arms included use of a symptom-specific aromatherapy sachet scent involving deep breathing. The parallel default control arm (for those children with medical exclusion criteria to aromatherapy) included use of a visual imagery picture envelope and deep breathing. Symptom burden was sequentially assessed at 5 and 60 minutes using the Baxter Retching Faces scale for nausea, the Wong-Baker FACES scale for pain, and the Children's Anxiety and Pain Scale (CAPS) for anxious mood. Ninety children or adolescents (mean age 9.4 years) at a free-standing children's hospital in the United States were included in each arm (total n = 180).
RESULTS: At 5 minutes, there was a mean improvement of 3/10 (standard deviation [SD] 2.21) on the nausea scale; 2.6/10 (SD 1.83) on the pain scale; and 1.6/5 (SD 0.93) on the mood scale for the aromatherapy cohort (p < 0.0001). Symptom burden remained improved at 60 minutes post-intervention (<0.0001). Visual imagery with deep breathing improved self-reports of symptoms but was not as consistently sustained at 60 minutes.
SIGNIFICANCE OF RESULTS: Aromatherapy represents an implementable supportive care intervention for pediatric patients receiving palliative care consults for symptom burden. The high number of children disqualified from the aromatherapy arm because of pulmonary or allergy indications warrants further attention to outcomes for additional breathing-based integrative modalities.
OBJECTIVES: In Singapore, the core curriculum for end-of-life (EOL) care used in nurse training courses is limited. Only 45% of nurses indicated familiarity with inpatient palliative care. Nurses who lack skills in palliative care may develop anxiety and negative attitudes towards caring for dying patients. We explored whether a two-day, multimodal EOL care workshop could reduce nurses' death anxiety and improve nurses' skills, knowledge, and attitude towards palliative care.
METHODS: Forty-five nurses participated in the workshop. At baseline before and at six weeks after, a 20-item knowledge-based questionnaire and the Death Attitude Profile-Revised (DAP-R) were administered. Six weeks post-workshop, in-depth interviews were conducted. We employed descriptive statistics, student paired samples t-test and inductive thematic analysis.
RESULTS: There was a significant improvement in nurses' knowledge score (p < 0.01) and reduction in their death anxiety score (p < 0.01). Fear of Death (p = 0.025) and Death Avoidance (p = 0.047) sub-scores decreased significantly. However, the remaining domains such as Neutral Acceptance, Approach Acceptance, and Escape Acceptance did not show any significant difference, although Escape Acceptance showed a trend towards a reduced score (p = 0.063). After the workshop, more nurses adopted the Neutral Acceptance stance (76.2%), and none of them fell into the Fear of Death subdomain. Most nurses interviewed reported a positive change in their knowledge, attitudes, and practice even after the workshop.
SIGNIFICANCE OF RESULTS: The multimodal palliative care workshop was useful in improving nurses' EOL knowledge and reducing their anxiety towards death. The positive change in nurses' attitudes and practices were noted to be sustained for at least six weeks after the intervention.
There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization’s Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia.
It is well-established that survival in burn injury is primarily dependent on three factors: age, percent total-body surface area burned (%TBSA), and inhalation injury. However, it is clear that in other (non-burn) conditions, nonmedical factors may influence mortality. Even in severe burns, patients undergoing resuscitation may survive for a period of time before succumbing to infection or other complications. In some cases, though, families in conjunction with caregivers may choose to withdraw care and not resuscitate patients with large burns. We wanted to investigate whether any nonmedical socioeconomic factors influenced the rate of early deaths in burn patients. The National Burn Repository (NBR) was used to identify patients that died in the first 72 hours after injury and those that survived more than 72 hours. Both univariate and multivariate regression analyses were used to examine factors including age, gender, race, comorbidities, burn size, inhalation injury, and insurance type, and determine their influence on deaths within 72 hours. A total of 133,889 burn patients were identified, 1362 of which died in the first 72 hours. As expected, the Baux score (age plus burn size), and inhalation injury predicted early deaths. Interestingly, on multivariate analysis, patients with Medicare (p=0.002), self-pay patients (p< 0.001), and those covered by automobile policies (p=0.045) were significantly more likely to die early than those with commercial insurance. Medicaid patients were more likely to die early, but not significantly (p=0.188). Worker's compensation patients were more likely to survive the first 72 hours compared to patients with commercial insurance (p<0.001). Men were more likely to survive the early period than women (p=0.043). On analysis by race, only Hispanic patients significantly differed from white patients, and Hispanics were more likely to survive the first 72 hours (p=0.028). Traditional medical factors are major factors in early burn deaths. However, these results show that nonmedical socioeconomic factors including race, gender, and especially insurance status influence early burn deaths as well.
Palliative care is a crucial component in improving peoples' end-of-life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a "good death", comparing what they thought their older patients would prefer to their own preferences for their own end-of-life care. Questionnaires asking about various options of end-of-life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.
Background: Abrupt withdrawal of pharmacological therapies for myasthenia gravis can exacerbate muscle weakness and even trigger myasthenic crisis. Such medications should ideally be continued, but how this can be achieved in patients approaching the end of life, particularly when enteral administration is compromised, has not been defined.
Case History: An 83-year-old man with a history of generalized myasthenia gravis and palliative metastatic anal adenocarcinoma was admitted to his local hospital with general decline, where he was considered by more than one physician to be actively dying from his cancer. In the days preceding admission, the patient had not taken his medications consistently, including the acetylcholinesterase inhibitor, pyridostigmine, for the management of his myasthenia gravis.
Case Management and Outcome: Reintroduction of the patient's usual myasthenia therapy improved his clinical condition to the point where he was no longer thought to be dying. When enteral administration of pyridostigmine was no longer possible, the patient was successfully converted to neostigmine, which was administered as a continuous subcutaneous infusion.
Conclusion:Undertreated myasthenia gravis can lead to a rapid deterioration in a patient's clinical condition, and such patients may be mistakenly diagnosed as dying. Undertreated myasthenia gravis should therefore be considered as a potentially reversible cause of acute deterioration, especially in patients with complex comorbidities. The use of neostigmine as a continuous subcutaneous infusion may have a role in the management of such patients, particularly when enteral administration of acetylcholinesterase inhibitors is no longer possible.
BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.
Le corps est le lieu de l’affrontement d’une réalité physique. Ce face à face avec le corps de l’autre, corps traumatisé, abîmé, amputé, déformé, détérioré, défiguré, me fait mal et me touche, moi bénévole en bonne santé. Cela me renvoie à ma propre image, à ce que je pourrais vivre si j’étais à la place du patient. Pourrais-je me supporter avec une trachéotomie, une poche, un anus artificiel, une tumeur externe qui me déforme et qui dégage des odeurs, un sein en moins… voire deux en moins, ma tête sans cheveux ?
Quelle curieuse idée d’avoir choisi "ces corps meurtris, regards croisés", comme thème de conférence pour une journée organisée par l’ASP fondatrice, association de bénévoles en soins palliatifs. Nous, bénévoles d’accompagnement, formés pour aller au "cœur à cœur" et non au "corps à corps", nous n’intervenons pas ou pratiquement pas sur les soins physiques : d’abord l’écoute, en option le toucher et le regard, comme ultime moyen de communication et d’accompagnement, voilà le mot d’ordre. Comme le dit Le Petit Prince : "l’essentiel est invisible pour les yeux, on ne voit bien qu’avec le cœur".
AIM: Identified Palliative Care Beds (Lits Identifiés Soins Palliatifs - LISPs) is a French specificity. Primarily created to integrate palliative care culture into conventional hospital units, the relevance of this measure became a controversial issue. Nowadays, hospital teams continue to frequently encounter complex situations regarding medical care for palliative patients. To the best of our knowledge, there is only one study, a quantitative one, bridging the gap about that subject. It showed failure in practicing palliative care work around LISP. Our study is based on a qualitative method that complements the quantitative study. It aimed to describe difficulties that limit palliative care practices in managing adult patients in LISP.
METHOD: This qualitative exploratory survey was conducted with a sample of health service professionals (n=20), from senior physicians to caregivers. Each semi-structured interview included open questions regarding their experiences, feelings and difficulties with palliative care practices on LISP. It also included closed questions concerning interviewee's demographics and career course. The data for this research were submitted to a two-stage analysis: first, a global review of each interview was performed to identify trends. Then, a detailed breakdown, question by question, was implemented.
RESULTS: From a quantitative perspective, the interviews revealed 305 difficulties, indicating the gaps and barriers limiting the implementation of a palliative approach in these services. From a qualitative perspective, five topics raised our attention by their recurrence in discourses: (1) partial knowledge about palliative care definition and legislation mostly due to a lack of training; (2) need for time; (3) need for human resources; (4) need for communication; (5) hard time in transitioning from curative to palliative care.
PERSPECTIVE: This survey gives the opportunity to understand health service professionals' difficulties in practicing palliative care in conventional medical services. It raises the central issue of the pricing reform on the health institutes activity. It also provides angles of inquiry to improve LISP effectiveness. This qualitative and descriptive study was designed to explore difficulties in practicing palliative care around LISP. Nevertheless, according to the size of the sample, results will need to be confirmed by a more extensive qualitative survey.
Les soins palliatifs restent une pratique au carrefour de plusieurs approches théoriques. L’approche palliative de l’accompagnement demande des diversités d’orientation en rapport avec la pluralité des sources d’angoisse. Ces angoisses sont à l’origine d’ambivalences, sources de difficultés existentielles. Ce travail analyse l’entretien motivationnel comme une perspective d’approche dans le processus d’accompagnement des patients souffrant de maladies chroniques évolutives afin d’améliorer leur qualité de vie.
Palliative care in oncology is an interdisciplinary approach, centered on patients and their families, carried out along the course of neoplastic diseases, based on symptom control, assertive communication and shared decision-making. Although clinical guidelines recommend a holistic intervention, early integration of palliative care into traditional oncological treatment, research shows a great delay in referral of patients, restricting palliative care to end-of-life care. Why does there seem to be a rationing of the early referral, sometimes in violation of human dignity? To a large extent it has to do with lack of knowledge, training and education of health professionals about palliative care and the techniques to deal with the process of death and dying. Several studies have demonstrated the benefit of integrating palliative actions into the routine of active cancer treatments, not only in terms of effective control of physical and psychological symptoms, but also in terms of overall quality of life, patient and family satisfaction, health care costs and survival in some cases. It is necessary to take measures that encourage oncologists to obtain further training in palliative care, as a formal, compulsory internship, integrated in their specific training program. This way, a new generation of physicians will surely change the lives of cancer patients, and their families, integrating - without disproportionate rationing - oncology and palliative medicine.
End-of-life care in the neonatal intensive care unit (NICU) is one of the most challenging practices for nurses. Negative emotions associated with moral distress often cause care to be incomplete or nurse disengagement. Emotional intelligence in nurses holds potential to address this issue, while improving patient outcomes. The purpose of this study was to critically appraise the evidence about emotional intelligence in nursing and to explore the relationship between emotional intelligence, moral distress in NICU nurses, end-of-life care, and other priority nurse and patient outcomes. A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses)–structured integrative review was conducted, and CINAHL, Ovid, PubMed, and other databases were searched. Twelve studies were identified as relevant to this review after exclusion criteria were applied. Evidence supports the efficacy of emotional intelligence in bedside nurses as a method of improving key nurse and patient outcomes. Additionally, research suggests that emotional intelligence can be improved by training interventions. Clinical educators should integrate emotional intelligence concepts and strategies into staff training. Further research is recommended to validate previous findings in the NICU setting. Exploration of the relationship between emotional intelligence and moral distress in NICU nurses would provide a foundation for experimental designs to evaluate the effectiveness of emotional intelligence training interventions.
This article studies forgiveness and reconciliation (F/R) in patients with cancer. It focuses on the end of life, when family conflicts resurface and unfinished business challenges patients and causes spiritual distress. Forgiveness and reconciliation may intensify patient-family relationships and facilitate peace of mind and peaceful death. Existing forgiveness models and interventions focus on coping in life, yet no study has examined F/R processes until death. Our mixed-method exploratory study hypothesized that F/R processes occur in phases, repeatedly, and are spurred by approaching death. Three interdisciplinary units at a major Swiss hospital observed 50 dying patients with cancer experiencing severe conflicts with relatives, themselves, and/or with fate/God. Participant observation was combined with interpretative phenomenological analysis and descriptive statistical analysis. A semi-structured observation protocol was developed based on a 5-phase model. The protocol included space for notes (emotions, interventions, effects on dying processes). It was assessed by 20 professionals for 1 year. Analysis was supported by international interdisciplinary experts. We found that conflicts were complex and involved relational, biographical, and spiritual layers. In 62% of patients, F/R processes occurred repeatedly. Many patients died after finding F/R (22 within 48 hours). Patients indicated that imminent death, a mediating third party, acceptance, and experiences of hope motivated them to seek F/R. Although deep relationships may support F/R processes, our limited data on near-death experience/spiritual experiences restrict interpretation. Forgiveness and reconciliation processes oscillate between 5 phases: denial, crisis, experience of hope, decision, and finding F/R. Understanding F/R processes, empathy, hope, and a neutral third party may support patients in seeking forgiveness.
Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed.
Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software.
Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure.
Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.
Building on the strong work of previous research agendas (2009-2012, 2012-2015, 2015-2018), the Hospice and Palliative Nurses Association Research Advisory Council developed the 2019-2022 Research Agenda in consultation with Hospice and Palliative Nurses Association (HPNA) membership and assessment of major trends in palliative nursing. The HPNA Research Advisory Council identified 5 priority areas and asked subject experts in each area to summarize the state of the science, identify critical gaps, and provide recommendations for future research. This document expands the executive summary published on the HPNA website (www.advancingexpertcare.org/hpna/) and provides supporting evidence for the 2019-2022 recommendations. The 5 priority areas are as follows: (1) pediatric hospice and palliative nursing research; (2) family caregiving; (3) interprofessional education and collaborative practice; (4) big data science, precision health, and nursing informatics; and (5) implementation science.
L’irruption du cancer, du fait du risque de mort qu’il évoque, confronte souvent dans un premier temps le patient à un enjeu vital, et le diagnostic d’une telle maladie peut provoquer diverses réactions psychologiques. La prise en charge médicale qui fait suite au diagnostic peut assurer un cadre sécurisant et avoir un effet contenant les angoisses, mais les effets secondaires des traitements et, plus tard, les séquelles possibles observées au décours des traitements, constituent d’autres sources de préoccupation pour le sujet concerné et souvent aussi pour ses proches.