"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.
Objectives: This study aimed to reveal the features of older adults’ advance care planning (ACP) discussions by identifying psychosocial factors related to their discussions in Japan, where people value family-centered decision making.
Methods: A qualitative study using in-depth interviews was conducted with 39 participants (aged =65 years) recruited from the outpatient department of a community hospital in Fukushima, Japan. Data were analyzed using the grounded theory approach.
Results: Through experiences of family caregiving, participants became aware of their own feelings about the end of life. Equal relationship with family members was important for lowering the threshold for having discussions. Some participants and their families in the same generation reached agreements on ACP; however, they were willing to yield to children’s decision making despite these discussions.
Discussions: These findings provide insights into the psychosocial factors in relation to ACP discussions and support for the role of ACP discussions in the family-centered decision-making culture.
Objective: This study aimed to clarify the experiences and hidden needs of older patients with advanced cancer, their families and their physicians in palliative chemotherapy decision-making.
Materials and Methods: We conducted in-depth qualitative individual interviews with content analysis. Patients who were diagnosed as having advanced cancer, were aged =70 years (n = 15, median [range] = 77 [70–82] years) and had volunteered to receive palliative chemotherapy within the past 6 months were enrolled. Their families and physicians were also interviewed.
Results: The following four themes were identified: (i) physician’s awareness of paternalism; (ii) readiness for communication of serious news; (iii) spiritual care need assessment and (iv) support as a team. The patients and families expected physicians to demonstrate paternalism in their decision-making because they were unconfident about their self-determination capability. Although the physicians were aware of this expectation, they encountered difficulties in recommending treatment and communicating with older patients. The patients had spiritual pain since the time of diagnosis. Psychological issues were rarely discussed during decision-making and treatment, triggering feelings of isolation in the patients and their families.
Conclusion: Older patients and their families expected a paternalistic approach by the physicians for palliative chemotherapy decision-making. The physicians found it difficult to offer treatment options because of older patient diversity and limitations in evidence-based strategies. Therefore multidisciplinary approaches and evidence-based decision support aids are warranted. Because older patients and their families often have unexpressed psychological burdens including unmet spiritual needs, medical professionals should provide psychological care from the time of diagnosis.
Background: Family meetings are often conducted in palliative care, but there is no universal agreed or accepted model. A new model of Patient-Centered Family Meetings is proposed whereby the patient sets the agenda.
Aim: To seek palliative care clinicians' perceptions and experiences of Patient-Centered Family Meetings (“Meetings”) and their acceptability and feasibility in the inpatient specialist palliative care setting.
Design: A qualitative study used semistructured interviews. Theoretical and procedural direction was taken from grounded theory with thematic content analysis using the constant comparative method.
Setting/Participants: Interviews were conducted with clinicians (n = 10) at the intervention site who had participated in a Meeting.
Results: Four themes were identified: (1) a patient-set agenda gives patients a “voice”; (2) a patient-set agenda and the Meeting model enhances clinicians' understanding of patients and families; (3) the Meeting model was perceived to be acceptable; and (4) the Meeting model was perceived to be only feasible for selected patients.
Conclusion: Clinicians perceived that a patient-set meeting agenda with defined questions enhanced their knowledge of the patient's issues and their understanding of the patient and their family's needs. The patients' most important issues often differed from the clinicians' expectations of what might be important to individual patients. There were contrasting views about the acceptability and feasibility of these Meetings as standard practice due to clinician time constraints and the Meeting not being required or relevant to all patients. Given the perceived benefits, the identification of patients and families who would most benefit is an important research priority.
As the COVID-19 pandemic continues to spread across the country, I am proud to be a part of a community of physicians selflessly stepping up to the call to help. Palliative medicine has taken on a vital role in this crisis, in leading discussions on goals of care and taking over the care of those who are dying of this disease. As a palliative medicine fellow, I feel a palpable energy among my colleagues and mentors as we rise up to this challenge. We lead ethics committees on codes and triage committees for ventilator allocation if we were to face a shortage—a situation that would have been inconceivable just a few weeks ago. Now more than ever, there is a common sense of purpose among health care providers: we are all in this fight together. Yet behind this common purpose, many of us have a common fear. Not only do we fear for our own health, but we also fear for the health of our families that we come home to at night.
Context and aim: Family as the basic social structure is relevant for caring in pediatric cancers because it supports almost all the treatment in the Cameroonian context. During a work in 2018, published in February 2019 on the behaviours of carers when a child is about to die of pediatric cancer, we were struck by the sentence of a saddened mother, “I didn’t expect to talk about this, since the child died, the word family does not mean anything for me anymore”. Thus, this article is interested by the future of families that lost a child of cancer and is based on a qualitative research. With family as focus, the main questions are knowing how families face cancers treatments and how about their future after the death of children in the Cameroonian context.
Material and method: Data collection is based on a literature review and semi-structured interviews with nuclear families, single-parent families and extended families, who are bereaved of pediatric cancer. Semantic analysis permits data's interpretation through the model of deviant orientation of Parsons T., related to alienation and extended to rebelliousness or withdrawal that have a relative look with the spontaneous order of methodological individualism and functional substitutes of functionalism.
Results: Therefore, this methodological device shows that emergence of nuclear families in Africa is related to poverty and westernization of some African cultural trends, which has an effect on the emblematic “African solidarity”. The financial dwindling of extended families, due to the high costs of pediatric cancers treatments in the exclusive charge of patients’ families, is leading to the transition from mechanical to organic solidarities. Hence, the nuclearization of certain extended families and individualization of some behaviors. In a context where the recourse to psychology only refers to foolish people, this isolation in turn entails a significant emotional investment, mainly among people who keep the patients, as mothers who are pillars of their families. This emotional overflow continues even after the death of the child, so that even the current relationship particularly in the nuclear or monoparental families where mothers are pillars, is at stake.
Conclusion: On the hole, knowledge and understanding of the cultural and psychosocial determinants able to deconstruct families after children's death, is an asset to look for a better future for patients and families during cancers treatments.
Le couple est "une foule à deux" disait Freud. Il s’agit d’une relation entre deux êtres qui est marquée d’un fonctionnement particulier. Le couple a ses habitudes, ses modes de vie, ses règles de fonctionnement plus ou moins tacites. Face à la maladie, le couple est ébranlé. Chacun vit une réalité différente avec ses appréhensions et ses craintes qui lui sont singulières : "Je n’ai pas le droit de me plaindre, c’est lui qui est malade…". Une asymétrie se crée entre "celui qui est malade" et "celui qui est (censé) être bien portant". Pourtant, le partenaire de vie est touché, lui aussi, dans son corps et dans son être. Des troubles du sommeil, de l’appétit, une fatigue physique et psychique, sont souvent constatés. Un sentiment d’impuissance, de culpabilité, de non-légitimité "à dire" ce qu’il ressent à son proche malade est prégnant. Un climat de non-dits règne au sein du couple. Au travers de situations cliniques relatées, nous partirons de l’observation que le soutien apporté aux proches permet de maintenir les ressources personnelles de l’aidant et favorise "l’accordage" relationnel, la communication au sein du couple. Aider le couple dans les différentes crises induites par la maladie grave, peut lui permettre de développer une nouvelle dynamique. De manière préventive, cela permet de favoriser la transmission et l’accompagnement du deuil à venir pour le proche.
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.
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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.