"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians’ limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care.
Dr. Wakam: I’m 5 hours into my ICU shift at a community hospital in Detroit when the results of another arterial blood gas return. My patient has been hospitalized for 3 days and is Covid-19–positive. Over the past 12 hours, his treatment has progressed from intubation, to prone positioning on 100% fractional inspired oxygen, to medically induced paralysis, and finally to bilevel ventilation. The results from the arterial blood gas are dismal: pH 7.19, pCO2 70.1, pO2 63.7, HCO3 26.0. He has already experienced episodes of profound hypoxia when we try to rotate him into a supine position, and his heart has begun to show signs of strain, with periods of atrial fibrillation with rapid ventricular response and nonsustained runs of ventricular tachycardia. A request to transfer the patient for extracorporeal membrane oxygenation (ECMO) is denied. It’s 11 p.m., and I’m worried that my patient won’t survive until morning.
[Début de l'article]
Ce livre constitue une enquête sur l'affaire Vincent Lambert, homme en état végétatif autour duquel sa famille se déchire à coups de procédure judiciaire. En révélant les dimensions politique et romanesque de ce drame familial, elle pose également les questions éthiques de la fin de vie, de l'euthanasie et du suicide assisté.
Cela fait trois ans que Matthieu n'a pas vu sa famille, depuis qu'il a claqué la porte de la maison, le jour de ses 18 ans. Il n'a pas répondu aux appels de sa mère, a évité de donner des nouvelles. Il vit de petits boulots avec sa compagne Emma.
Sa tante, Grazia, lui apprend que sa mère est morte d'un cancer foudroyant. Il décide alors de rentrer pour l'enterrement. Mais cela se complique lorsqu'il découvre que sa mère, Bianca Fois, a tout prévu pour son inhumation en Sardaigne, dans le caveau familial : c'est lui, Matthieu, qui doit aller là-bas, avec son frère et sa soeur, des jumeaux de 11 ans, Gavi et Lena, avec lesquels il a été élevé mais qu'il ne connaît plus et dont il a des choses à se faire pardonner.
Ce livre raconte le deuil de trois adolescents qui devront apprendre à mieux se connaître pour traverser cette épreuve et celles du passé.
CONTEXT: There has been a growing consensus that parenteral nutrition and hydration is to be forgone in terminally ill patients with cancer. However, it remains unclear what the beliefs and perceptions of parenteral nutrition and hydration by the family members are.
OBJECTIVES: To clarify their beliefs and perceptions and to examine the relationships between the factors of family members, their beliefs and perceptions, and their overall satisfaction with the care the patient received at the place of death.
METHODS: This study was performed as a part of the cross-sectional anonymous nationwide survey of the bereaved family members of cancer patients in Japan.
RESULTS: In total, 1001 questionnaires were sent and 610 were returned. Among these, 499 were analyzed. Regarding the prevalence of beliefs and perceptions about parenteral nutrition and hydration, 'When a patient cannot eat enough, parenteral hydration is needed' was the highest (87.7%), followed by 'The opinions of medical staff are important in the issue of parenteral nutrition and hydration', 'Parenteral hydration serves as a substitute for oral hydration', and 'If I were a patient and could not eat enough, parenteral hydration would be needed' (85.1, 81.0, and 80.0%, respectively). We extracted two concepts as follows: 'Belief that parenteral nutrition and hydration are beneficial' and 'Perceived need for parenteral nutrition and hydration'. They were not identified as independent determinants of overall care satisfaction.
CONCLUSION: This study showed that beliefs and perceptions about parenteral nutrition and hydration were important in the family members in palliative care.
BACKGROUND: Caring for patients in the end-of-life is an emotionally and physically challenging task. Therefore, undergraduate nursing students (UNS) need opportunities to learn to care for the dying patient. This study aimed to describe UNS' experiences of caring for patients at end-of-life.
METHODS: Interviews with 16 UNS in their last semester of nursing education were conducted. Data were analyzed with a phenomenological approach.
RESULTS: The UNS created a professional relationship with the dying patient. It meant that when the patient was unable to speak for themselves, the UNS could still meet his/her wishes and needs. The UNS believed they could take responsibility for the patient who was no longer able to take responsibility for themselves. Meeting with the patient's family could be experienced with anxiousness but was dependent on the personal chemistry between the patient's family and the UNS.
CONCLUSION: The UNS creates a relationship with the patient and their family. To be knowledgeable about the patient's physical and psychosocial needs means that the UNS can support the patient in the end-of-life phase. Being close to the patient and the family results in an intensity of emotions in the care situation. The UNS can receive support from their colleagues during processing their emotions and creating an experience from their encounters with patients in end-of-life care.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
Advance care planning is spreading globally, but it is still a difficult task for healthy, community-dwelling Japanese residents. In Japan, it is called “life discussion,” and the first step is a discussion on goals, values, and preferences of medical care among family or other close persons, as knowledge on this topic is limited. This study aimed to explore the factors associated with the degree of engagement in life discussions among friends and family in depopulated areas. In 2 areas of Japan, 2466 individuals (aged 40-79 years) participated in this survey. Health/life habits, such as collecting health information and participating in some community activities, were significantly associated with the discussions more than attitude to medical/long-term care and community. Additionally, it was discussed how local governments could intervene to encourage advance care planning in depopulated areas. In conclusion, health habits or attitudes for care such as preference and desire for care among community-dwelling adults were associated with engaging in the discussions. It was proposed that local governments should motivate individuals to consider end-of-life experiences from a first-person perspective for creating advance care planning directives, and nurses could facilitate the discussion when death is imminent.
BACKGROUND AND OBJECTIVES: Transitioning to a nursing home (NH) is a major life event for 1.4 million NH residents in the United States. Most post-acute NH admissions plan for rehabilitation and discharge home, but with nearly 70% of NH residents being palliative care (PC) eligible, many evolve into long-term placements secondary to poor health and associated decline in function and/or cognition. This article describes the perceptions of NH PC-eligible residents and families transitioning to life in a NH.
METHODS: Residents at 3 NHs in Northern California (N = 228) were screened for PC eligibility. A convenience sample of PC-eligible residents and their family members (n = 28) participated in qualitative interviews that explored the experience of living as a NH resident with serious illness. Data were analyzed using grounded theory methodology.
RESULTS: Our study provides insights into the experiences of transitioning to a NH from the perspectives of PC-eligible residents and their families. These data describe how PC-eligible residents and their families experienced disempowerment as they perceived being left out of decisions to go to a NH, loss of autonomy once at the NH, dealt with the realization that they would not be going home, and described perceived barriers to going home.
DISCUSSION AND IMPLICATIONS: The inclusive and person-centered model of care that PC provides naturally empowers residents and family members. Adequate provision of PC services, together with changes in policy related to NH culture and benefit management, could improve the experience of transitioning to a nursing home.
Sense of control in end-of-life (EOL) care plays a critical role in the patient's well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients' and families' control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff's strategies to address desire for control.
Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore.
Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.
Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed.
Conclusion: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.
Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient's declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient's death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver's situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.
Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services.
Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes.
Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal.
Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers’ attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer.
Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.
BACKGROUND: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
AIM: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.
DESIGN: Qualitative study.
SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.
RESULTS: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.
CONCLUSION: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.
BACKGROUND: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care.
AIM: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach.
DESIGN: Systematic interpretive exploration using the process of meta-ethnography was utilised.
DATA SOURCES: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme.
RESULTS: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.
More research to examine factors contributing to health-care disparities at the end of life is greatly needed. This article outlines a failed attempt to quantify some of the motivators in medical decision-making for African American families faced with a decision to pursue or forego a percutaneous endoscopic gastrostomy in a loved one at the end of life. It explores the complexities of spirituality, history, culture, and death in our patient population in Charleston, South Carolina, where health-care disparities are well-documented, and distrust has deep historical roots. It outlines the need for qualitative research, where the defining role of the researcher is to practice the paramount palliative skill of listening.
BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.
OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care.
METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for?
DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.