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1.
PLoS One ; 19(3): e0298783, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38536786

RESUMO

BACKGROUND: People with mild to moderate dementia and their loved ones may experience strong existential and spiritual challenges due to the disease. People with dementia could therefore benefit greatly from ongoing conversational support. Within the literature and in supportive practice, there are very few tools that help professionals provide this type of support. Professionals may therefore be unaware of, or uncertain of, how support can be given. OBJECTIVE: To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. METHODS: Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework. RESULTS: Five types of approaches, corresponding to the five fundamental polarities within the basic framework, were found to be helpful in alleviating tensions and bolstering strengths. For issues of self-confidence and -worth, an approach of exploring the felt self was developed; for issues of capacity and adaptability, an exploring daily routines approach; for issues of security and loss, an exploring a trinity of needs approach; for issues of burden and enrichment, an exploring memory approach; and for issues of faith and meaning, an exploring ones' predicament approach. When exploring these approaches, participants found sets and sequencing of questions and prompts to be helpful and transformative. CONCLUSION: Professionals can use the Diamond framework to provide conversational support to alleviate tension, enhance meaning and bolster strength for clients and loved ones.


Assuntos
Demência , Espiritualidade , Humanos , Projetos Piloto , Cuidados Paliativos , Demência/terapia , Diamante
2.
Am J Hosp Palliat Care ; : 10499091241228254, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38234063

RESUMO

Background: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient's clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care.

3.
Eur J Pediatr ; 183(2): 629-637, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37950793

RESUMO

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION:  Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.


Assuntos
Pais , Terapias Espirituais , Criança , Humanos , Cuidados Paliativos , Espiritualidade , Pesquisa Qualitativa
4.
Dementia (London) ; 23(1): 91-108, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37934923

RESUMO

BACKGROUND: People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support. METHODS: Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output. FINDINGS: Central existential and spiritual issues were found to be: self-confidence and -worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one's life situation and wanting certainty and meaning. CONCLUSIONS: The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.


Assuntos
Demência , Humanos , Espiritualidade , Cuidados Paliativos , Pessoal de Saúde , Família
5.
J Adv Nurs ; 80(1): 200-213, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37458271

RESUMO

AIM: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto. DESIGN: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing. METHODS: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020. Forty-two interviews were conducted, based on a semi-structured open-ended design. A thematic narrative approach combined with the five phases of care as defined by Tronto was used to analyse the empirical data. Subsequently, Tronto's identified ethical qualities were used to identify the moral dimension of these empirical findings. RESULTS: We found that in the care process (1) family can find it difficult to recognize their loved one's care needs; (2) both family and staff are reluctant to discuss the allocation of responsibilities with each other; (3) family sometimes feels insecure when it comes to connecting with their loved one; (4) family is often reluctant to provide feedback to staff when they are critical about the care that has been given; and (5) family is generally mild in judging staff, due to staff shortages. The care ethical interpretation of these findings showed that the moral qualities of attentiveness, responsibility, competence, responsiveness, and solidarity are under pressure to a certain extent. CONCLUSION: Family experiences moral distress during the care process, which hinders family involvement in nursing homes for people with dementia. IMPACT: Nursing home staff can look for and pilot strategies focused on supporting families to act more in accordance with the moral qualities that are under pressure. This can improve family involvement in practice. PATIENT OR PUBLIC CONTRIBUTION: No Patient/Public Contribution. IMPLICATIONS FOR PRACTICE/POLICY: Nursing home staff paying more attention to families' emotional struggles related to the decline of their loved one, could help families to be more attentive to noticing true care needs of the resident. Both family and nursing home staff should take more often initiatives to evaluate the division of care responsibilities with each other. Nursing home staff should help family connect with their loved one during their visits if they experience difficulties in doing so. Nursing home staff taking more often initiatives to contact family and ask them how they perceive the care for their loved one, can positively affect the responsiveness of both family and staff. It would be helpful if nursing home management could ensure the presence of sufficient and qualified staff so that the first four phases of the care process are not hindered by the lack of staff.


Assuntos
Demência , Casas de Saúde , Humanos , Família/psicologia , Pesquisa Qualitativa , Emoções
6.
Violence Against Women ; : 10778012231205591, 2023 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-38055959

RESUMO

Engaging in dialogue with critical mothers, midwives, midwives in training, and doulas in the Netherlands, this study furthers the theoretical understanding of both obstetric violence and the activist resistance against it. Obstetric violence is understood as part of a process of relational separation, leaving the pregnant person isolated. The activist resistance against it is consequently theorized as the abolitionist building of an alternative "otherworld" of radical relational care. The themes established are: (1) "institutionalized separation" with the subtheme's "expropriation," "carcerality," and "obstetric violence;" and (2) "undercommoning childbirth" with subthemes "fugitive planning," "anarchic relationality," and "obstetric abolition."

7.
Death Stud ; : 1-15, 2023 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-37883693

RESUMO

Despite the vast developments in research on loss and grief, dominant grief models fall short in reflecting the comprehensive issues grieving persons are facing. Three causes seem to be at play: grief is usually understood to be connected to death and other types of loss are under-researched; the majority of research is done from the field of psychology and on pathological forms of grief, hardly integrating research from other disciplines; and the existential suffering related to grief is not recognized or insufficiently integrated in the dominant models. In this paper, we propose an integrated process model (IPM) of loss and grief, distinguishing five dimensions of grief: physical, emotional, cognitive, social, and spiritual. The integrated process model integrates therapies, tools, and models within different scientific theories and paradigms to connect disciplines and professions. The comprehensive and existential understanding of loss and grief has relevance for research, clinical settings and community support.

8.
Palliat Med ; 37(9): 1303-1325, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37461310

RESUMO

BACKGROUND: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. AIM: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. DESIGN: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). DATA SOURCES: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. RESULTS: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. CONCLUSIONS: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.


Assuntos
Poder Familiar , Religião , Criança , Humanos , Cuidados Paliativos , Espiritualidade , Pais
9.
J Adv Nurs ; 79(10): 3876-3887, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37308976

RESUMO

AIM: To gain insight into the perceived emotional impact of providing palliative care among nursing assistants in Dutch nursing homes, their strategies in coping with this impact and associated needs. DESIGN: Exploratory qualitative study. METHODS: In 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open-coded by three independent researchers following the thematic analysis approach. RESULTS: Three themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings. CONCLUSION: Elements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nursing assistants should be better supported in coping with the emotional impact of providing palliative care. IMPACT: In nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard. REPORTING METHOD: The QOREQ checklist was used for reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistentes de Enfermagem , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Casas de Saúde , Assistentes de Enfermagem/psicologia
10.
Aging Ment Health ; 27(12): 2457-2465, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37036420

RESUMO

OBJECTIVES: To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die. METHODS: Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device. RESULTS: Four intertwined constituents together with the essence of the phenomenon provide a layered description of what it means to see no future for oneself. In all constituents: 1) not sharing everyday life, 2) looking for new commitments, 3) facing present losses and future fears and 4) imagining not waking up in the morning, the essence losing zest for life seeped through their daily experiences. CONCLUSIONS: As their horizon of future possibilities is shrinking, older people in our study experience a loss of zest for life and start to questioning the value of their present lives. And although a certain languishing mood can be discovered, the phenomenon 'seeing no future for oneself' does not entail a wish to die.


Assuntos
Envelhecimento , Medo , Humanos , Idoso
11.
Artigo em Inglês | MEDLINE | ID: mdl-36767521

RESUMO

BACKGROUND: During the course of their disease, patients are, apart from suffering physical discomfort, also confronted with psychological, social, and spiritual challenges. However, healthcare professionals often lack the knowledge and skills to address the spiritual dimension and are in need of support for taking this responsibility. Spiritual caregivers are experts in spiritual care, but their contribution to the integration of this care by other healthcare professionals is largely unknown. OBJECTIVE: The aim of this study was to investigate how Dutch spiritual caregivers view their role in increasing the integration of spiritual care in daily healthcare practice as provided by other healthcare professionals in the Netherlands, and how they address this role. METHODS: An online survey was conducted from May until June 2021 among spiritual caregivers working in Dutch healthcare. Data were analysed using descriptive statistics. RESULTS: The majority of the 174 respondents answered that they already fulfil a role in the integration of spiritual care by, for example, providing education, coaching on the job, or participating in multidisciplinary consultation. However, the majority of respondents experienced barriers to their contribution, such as confusion of terminology and use of language while collaborating with other healthcare professionals and reluctance to share information. CONCLUSIONS: While spiritual caregivers realise having the potential to make important contributions to the further process of integration of spiritual care into the daily practice of other healthcare professionals, some practices and perceptions, especially from within their own discipline, may hamper this.


Assuntos
Cuidadores , Terapias Espirituais , Humanos , Cuidadores/psicologia , Espiritualidade , Atenção à Saúde , Pessoal de Saúde
12.
Age Ageing ; 52(1)2023 01 08.
Artigo em Inglês | MEDLINE | ID: mdl-36626318

RESUMO

OBJECTIVES: In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. METHODS: Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. RESULTS: Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. CONCLUSIONS: Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication.


Assuntos
Demência , Eutanásia , Médicos , Humanos , Diretivas Antecipadas , Pesquisa Qualitativa , Países Baixos , Demência/diagnóstico
13.
Am J Hosp Palliat Care ; 40(1): 87-95, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-35531900

RESUMO

Background: National clinical guidelines have been developed internationally to reduce variations in clinical practices and promote the quality of palliative care. In The Netherlands, there is considerable variability in the organisation and care processes of inpatient palliative care, with three types of hospices - Volunteer-Driven Hospices (VDH), Stand-Alone Hospices (SAH), and nursing home Hospice Units (HU). Aim: This study aims to examine clinical practices in palliative care through different hospice types and identify variations in care. Methods: Retrospective cohort study utilising clinical documentation review, including patients who received inpatient palliative care at 51 different hospices and died in 2017 or 2018. Care provision for each patient for the management of pain, delirium and palliative sedation were analysed according to the Dutch national guidelines. Results: 412 patients were included: 112 patients who received treatment for pain, 53 for delirium, and 116 patients underwent palliative sedation therapy. Care was provided in accordance with guidelines for pain in 32%, 61% and 47% (P = .047), delirium in 29%, 78% and 79% (P = .0016), and palliative sedation in 35%, 63% and 42% (P = .067) of patients who received care in VDHs, SAHs and HUs respectively. When all clinical practices were considered, patient care was conducted according to the guidelines for 33% of patients in VDHs, 65% in SAHs, and 50% in HUs (P < .001). Conclusions: The data demonstrate that care practices are not standardised throughout Dutch hospices and exhibit significant variations between type of hospice.


Assuntos
Delírio , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Estudos Retrospectivos , Cuidados Paliativos , Dor , Delírio/tratamento farmacológico
14.
Palliat Support Care ; 21(5): 843-849, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35983632

RESUMO

OBJECTIVES: Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. METHODS: A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. RESULTS: All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. SIGNIFICANCE OF RESULTS: Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Emoções , Casas de Saúde
15.
Space Cult ; 26(3): 339-350, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38602919

RESUMO

While the COVID-19 crisis has affected people all around the world, it has not affected everyone in the same way. Besides glaring international differences, disparities in personal and situational factors have resulted in strikingly dissimilar effects even on people within the same country. Special attention is required in this regard for people with intellectual disabilities (ID) who are vulnerable to marginalization and precarization during crises as concerns over safety and public health are likely to trump consideration for inclusion and care. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called "vulnerable spaces." Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.

16.
Palliat Med ; 36(10): 1493-1503, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36305616

RESUMO

BACKGROUND: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. AIM: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. DESIGN: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). SETTING/PARTICIPANTS: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). RESULTS: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2-4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7-39.5, p < 0.001). CONCLUSIONS: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans.


Assuntos
Cuidados Paliativos , Espiritualidade , Humanos , Cuidados Paliativos/métodos , Equipe de Assistência ao Paciente , Cuidadores , Comunicação
17.
Ned Tijdschr Geneeskd ; 1662022 10 05.
Artigo em Holandês | MEDLINE | ID: mdl-36300466

RESUMO

OBJECTIVE: To explore what Dutch general practitioners (GPs) need and what their felt responsibilities and considerations are during (decision-making for) physician assisted dying (PAD) in the context of palliative care in the home-setting. DESIGN: A qualitative interview study was performed as part of a larger interview-study exploring the experiences of patients, relatives, and other care-professionals with PAD. METHOD: Purposive sampling was adopted to select eleven GPs with experience in end-of-life decision-making and with sufficient variety on the domains of age, gender, work setting and additional expertise. Narrative interviews were conducted by a GP-researcher. Interviews were transcribed, anonymized and analyzed through narrative thematic analysis. A member check with participants was performed. RESULTS: GPs mentioned corresponding needs on the personal level, in the interaction with patients and families, and on an organizational/societal level. Similar examples of complicating family-dynamics were described. Meanwhile, different considerations emerged in relation to how to act and what to take responsibility for during PAD, such as GPs' own life views, sort/duration of treatment relationships, and care for relatives. Last, casuistry of PAD-requests of patients with metastasized cancer emerged - in theory the least controversial cases - in which specific circumstances made GPs again (re)consider their responsibilities and boundaries. CONCLUSION: This study provides new insight into what matters for Dutch GPs while trying to realize 'good euthanasia-care' in the home-setting. The study raises important questions about the position of GPs, the conditions under which they need to operate, and what reasonably may be expected of them.


Assuntos
Clínicos Gerais , Suicídio Assistido , Humanos , Países Baixos , Tomada de Decisões , Pesquisa Qualitativa
18.
Artigo em Inglês | MEDLINE | ID: mdl-36307176

RESUMO

OBJECTIVES: Hospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), stand-alone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units.This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types. METHODS: A retrospective cohort study using clinical records of adult hospice inpatients in 2017-2018 from a random national sample of hospices. RESULTS: In total 803 patients were included from 51 hospices, mean age 76.1 (SD 12.4). 78% of patients had a primary diagnosis of cancer, 3% identified as non-Dutch cultural background and 17% were disorientated on admission. At admission, all patients were perceived to have physical needs. Psychological needs were reported in 37%, 36% and 34%, social needs by 53%, 52% and 62%, and existential needs by 23%, 30% and 18% of patients in VDH, SAH, HU units, respectively. 24%, 29% and 27% of patients from VDHs, SAHs and HUs had care needs in three dimensions, and 4%, 6% and 3% in all four dimensions. CONCLUSIONS: People who access Dutch hospices predominantly have cancer, and have a range of physical, psychological, social and existential needs, without substantial differences between hospice types. Patients with non-malignant disease and non-Dutch cultural backgrounds are less likely to access hospice care, and future policy would ideally focus on facilitating their involvement.

19.
Ned Tijdschr Geneeskd ; 1662022 08 11.
Artigo em Holandês | MEDLINE | ID: mdl-36036706

RESUMO

General practitioners (GP's) are confronted with patients with complex psychosocial problems that run the risk of having unintended and unwanted pregnancies. This raises two questions: 1) to what extend do GP's have the right to enter the private sphere of patients in order to discuss whether they should have children? And 2) how can such a conversation be successful? Based on a case, in this contribution we argue that GP's can play an important role in sustaining the autonomy of patients with complex problems and we provide suggestions on how to start a conversation about this topic. The contribution ends by sketching how GP's can get support in situations like this by a governmental national program Nu Niet Zwanger (Not Pregnant Now), that supports health care professionals in sustaining the autonomy of vulnerable groups in choices around pregnancy and contraception.


Assuntos
Medicina de Família e Comunidade , Clínicos Gerais , Criança , Comunicação , Feminino , Humanos , Gravidez , Gravidez não Planejada , Inquéritos e Questionários
20.
Artigo em Inglês | MEDLINE | ID: mdl-35710709

RESUMO

OBJECTIVES: In palliative care, validated tools for professionals that facilitate day-to-day spiritual conversations with patients and loved ones are scarce. The objective of this study was to validate the Diamond spiritual conversation model across different palliative care settings as well as professional and educational levels. METHODS: An online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on-letting go, doing-undergoing, remembering-forgetting, me-the other and believing-knowing were operationalised and evaluated on reported occurrence. RESULTS: In conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one's wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regularly to very often. In conversations with loved ones, this was 70.8%, 78.5%, 55.4%, 68,8% and 62%, respectively. Respondents working in hospices reported these themes significantly more than those working in home care settings, nursing homes or hospitals. Nurse assistant respondents reported the themes significantly less than nurses or chaplains. CONCLUSION: From the perspective of professionals providing palliative care in different palliative care settings, the Diamond model offers a validated framework for addressing relevant spiritual themes for patients and loved ones.

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