"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 ?
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
Trial tested effect of advance care planning on family/surrogates’ understanding of patients’ end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)—(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)—(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients’ treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, 2 = 11·52, p = 0·01)], even as patients’ preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients’ treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3).
AIM: To synthesise qualitative studies of patients' families' experiences and perceptions of end-of-life care in the intensive care unit when life-sustaining treatments are withdrawn.
DESIGN: Qualitative meta-synthesis
DATA SOURCES: Comprehensive search of 18 electronic databases for qualitative studies published between January 2005 - February 2019.
REVIEW METHOD: Meta-aggregation.
RESULTS: Thirteen studies met the inclusion criteria. A conceptual 'Model of Preparedness' was developed reflecting the elements of end-of-life care most valued by families: 'End-of-life communication'; 'Valued attributes of patient care'; 'Preparing the family'; 'Supporting the family' and; 'Bereavement care'.
CONCLUSION: A family-centred approach to end-of-life care that acknowledges the values and preferences of families in the intensive care unit is important. These families have unmet needs related to communication, support and bereavement care. Effective communication and support are central to preparedness and if these care components are in place, families can be better equipped to manage the death, their sadness, loss and grief. The findings suggest that health professionals may benefit from specialist end-of-life care education, to support families and guide the establishment of preparedness.
IMPACT: Understanding the role and characteristics of preparedness during end-of-life care will inform future practice in the intensive care unit and may improve family member satisfaction with care and recovery from loss. Nurses are optimally positioned to address the perceived shortfalls in end-of-life care. These findings have implications for health education, policies and standards for end-of-life care in the intensive care unit.
BACKGROUND: Family conferences (FCs) in the intensive care unit play an important role in reducing the psychological burden of patients' families at the end of life. However, no studies have clarified the specific roles and contributions of nurses related to FCs for terminally ill patients in critical care and their families.
AIMS AND OBJECTIVES: To clarify nurses' contribution to FCs for terminally ill patients in critical care and their families and examine the priority of each item.
DESIGN: A modified Delphi method was used.
METHODS: This study consisted of two phases. In phase 1, an initial list was developed based on a literature review, individual interviews, and a focus group interview. Phase 2 involved two rounds of the Delphi survey. Practitioners (N = 55) from hospitals across Japan were recruited to the Expert Panel for phase 2. They were asked to rate each nurse's contribution in terms of its importance using a 9-point Likert scale (1 being "not important at all" to 9 being "very important"). Fifty participants responded to round 1 of the survey, and 46 participants completed round 2. If at least 80% of the panellists chose an importance level of 7 or higher, the item was considered "important".
RESULTS: The 65 items of the potential list were classified into three domains: preparation (16 items), discussion and facilitating meaning during a FC (32 items), and follow up after a FC (17 items). The expert panel determined that, of 65 items, 49 items on the proposed list of nurses' contribution were considered important.
CONCLUSIONS: This study clarified nurses' contribution to FCs, with consensus on their importance by expert nurses.
RELEVANCE TO CLINICAL PRACTICE: This study could be useful for improving and ensuring the quality of nurses' contribution to FCs and promoting collaboration between nurses and other medical professionals.
BACKGROUND: Patients with advanced cancer, receiving at-home palliative care, are subject to numerous symptoms that are changeable and often require attention, a stressful situation that also impacts on the family caregiver. It has been suggested that music therapy may benefit both the patient and the caregiver. We propose a study to analyse the efficacy and cost utility of a music intervention programme, applied as complementary therapy, for cancer patients in palliative care and for their at-home caregivers, compared to usual treatment.
METHOD: A randomised, double-blind, multicentre clinical trial will be performed in cancer patients in at-home palliative care and their family caregivers. The study population will include two samples of 40 patients and two samples of 41 caregivers. Participants will be randomly assigned either to the intervention group or to the control group. The intervention group will receive a seven-day programme including music sessions, while the control group will receive seven sessions of (spoken word) therapeutic education. In this study, the primary outcome measure is the assessment of patients' symptoms, according to the Edmonton Symptom Assessment System, and of the overload experienced by family caregivers, measured by the Caregiver Strain Index. The secondary outcomes considered will be the participants' health-related quality of life, their satisfaction with the intervention, and an economic valuation.
DISCUSSION: This study is expected to enhance our understanding of the efficacy and cost-utility of music therapy for cancer patients in palliative care and for their family caregivers. The results of this project are expected to be applicable and transferrable to usual clinical practice for patients in home palliative care and for their caregivers. The approach described can be incorporated as an additional therapeutic resource within comprehensive palliative care. To our knowledge, no previous high quality studies, based on a double-blind clinical trial, have been undertaken to evaluate the cost-effectiveness of music therapy. The cost-effectiveness of the project will provide information to support decision making, thereby improving the management of health resources and their use within the health system.
Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members.
Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.
Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but … ; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare.
Conclusion: the six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.
Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.
Objective: This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in (1) preparing the family; (2) participating in the provider meeting; (3) participating in the family meeting; and (4) following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems.
Conclusion: As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed biopsychosocial-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care.
Background: Telemedicine has been proposed as a means to improve access to palliative care. There is limited information about how health care workers feel about providing this kind of care and how families feel about receiving it.
Objective: this study assesses provider and caregiver perceptions of the safety and efficacy of the Distance Support Program (DSP) of a home-based palliative care provider in Beirut, Lebanon.
Design: interviews were conducted with 8 physicians and nurses who provided that care through the DSP as well as 49 caregivers of patients who received care between January 2015 and December 2017. Interviews were analyzed thematically.
Results: Although they would have preferred having access to home visits, caregivers reported that they valued the information, guidance, and emotional support they received through the DSP and they appreciated having telephone access to providers. Health providers reported the DSP was more efficient than home visits. They felt it was safest when delivered by an experienced provider, they had access to a reliable caregiver, and the patient was assessed at least once. They felt it was important to communicate clear expectations to patients and caregivers when delivering care by telephone.
Conclusions: Telemedicine can be a useful tool to provide palliative care services in settings where they would otherwise not be available.
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organisational and systemic approach which includes access to informal and professional support.
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.