La Loi Claeys-Leonetti du 2 février 2016 a institué un droit d'accès à la sédation profonde et continue jusqu'au décès (SPCJD) sous certaines conditions. En France, peu de données existent pour évaluer comment ce droit très récent s'installe sur le terrain. Le Centre national des soins palliatifs et de la fin de vie (CNSPFV), dont les missions sont notamment la collecte de données sur les conditions de la fin de vie en France et le suivi des politiques publiques sur le sujet a mené une première enquête quantitative nationale rétrospective début 2018. Son objectif principal était d'apprécier combien de SPCJD avaient été demandées et/ou proposées globalement en France en 2017, soit la première année pleine d'exercice possible de la loi, ses décrets d'application ayant été promulgués en août 2016. Cette première enquête avait également pour objectif d'accompagner cette nouvelle disposition législative pour mieux la faire connaître sur le terrain. C'est pourquoi il avait été choisi de la mener le plus largement possible, auprès à la fois des hôpitaux, des HAD, des EHPAD et des médecins généralistes, ce qui a pu être fait grâce au soutien de l'Ordre des médecins.
Cette première enquête n'avait pas permis d'obtenir de données quantitatives fiables. Le taux de réponse avait été trop faible, les structures interrogées ayant du mal à se mobiliser. Elles avaient invoqué des biais de mémoire et des difficultés d'identification des sédations profondes et continue jusqu'au décès au sein des pratiques sédatives de fin de vie en général, particulièrement à l'hôpital. Pour autant, elle avait été très instructive au plan qualitatif, montrant par exemple que cette pratique dépasse largement le champ des soins palliatifs. Elle avait aussi mis en lumière le fait que le terme de « sédation profonde et continue jusqu'au décès » renvoie à des pratiques différentes d'une spécialité médicale à une autre, comme c'est le cas dans d'autres pays et qu'il convient si l'on veut se faire une idée plus précise de ce qui se passe réellement sur le terrain de se mettre d'accord au préalable sur ce que recouvrent les données que l'on recueille. Cette première édition a conduit le CNSPFV à modifier sa méthode en 2019. Nous avons choisi de nous concentrer sur un plus petit échantillon de structures, de cibler une période de recueil plus courte pour éviter les biais de mémoire (1 semaine donnée), de recourir à des enquêteurs locaux, travaillant au sein des sites de l'enquête et surtout de travailler en amont avec eux pour élaborer ensemble une grille de caractérisation commune des SPCJD que nous souhaitions identifier au sein des pratiques sédatives de fin de vie. Cette enquête s'est focalisée sur quelques établissements hospitaliers, lieux de décès le plus fréquent en France. En effet selon les données de l'INSEE de 2017, les décès surviennent à l'hôpital dans 54% des cas, à domicile dans 24%, en EHPAD dans 13% des cas, sur la voie et lieu public dans
1% des cas et autre pour 8% des cas.
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BACKGROUND: Guidelines recommend an early access to specialised palliative medicine services for patients with cancer, but studies have reported a continued underuse. Palliative care facilities deliver early care, alongside antineoplastic treatments, whereas hospice care structures intervene lately, when cancer-modifying treatments stop.
AIM: This review identified factors associated with early and late interventions of specialised services, by considering the type of structures studied (palliative vs hospice care).
DESIGN: We performed a systematic review, prospectively registered on PROSPERO (ID: CRD42018110063).
DATA SOURCES: We searched Medline and Scopus databases for population-based studies. Two independent reviewers extracted the data and assessed the study quality using Joanna Briggs Institute critical appraisal checklists.
RESULTS: The 51 included articles performed 67 analyses. Most were based on retrospective cohorts and US populations. The median quality scores were 19/22 for cohorts and 15/16 for cross-sectional studies. Most analyses focused on hospice care (n=37). Older patients, men, people with haematological cancer or treated in small centres had less specialised interventions. Palliative and hospice facilities addressed different populations. Older patients received less palliative care but more hospice care. Patients with high-stage tumours had more palliative care while women and patients with a low comorbidity burden received more hospice care.
CONCLUSION: Main disparities concerned older patients, men and people with haematological cancer. We highlighted the challenges of early interventions for older patients and of late deliveries for men and highly comorbid patients. Additional data on non-American populations, outpatients and factors related to quality of life and socioeconomic status are needed.
In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
CONTEXT: Hospice care focuses on improving the quality of end-of-life care and respecting patients' preferences regarding end-of-life treatment. The impact of coronavirus disease 2019 (COVID-19) on the utilization of hospice services is unknown.
OBJECTIVES: To investigate the utilization of hospice care services before and during the COVID-19 pandemic.
METHODS: All patients (n = 19,900) cared for at Taipei City Hospital from January 2019 to April 2020 were divided into three time points: January-April 2019 (before COVID-19), May-December 2019 (interim), and January-April 2020 (during COVID-19). This cohort study compared the monthly utilization of hospice services before and during the COVID-19 pandemic.
RESULTS: There was no significant difference in hospice home visits (194 vs. 184; P = 0.686) and new enrollments (15 vs. 14; P = 0.743) to hospice home care before and during the pandemic. However, the bed occupancy rate in hospice units in the hospital was significantly reduced from 66.2% before the pandemic to 37.4% during the pandemic (P = 0.029), whereas that in non-hospice units had a non-significant decrease from 81.6% before the pandemic to 71.8% during the pandemic (P = 0.086). During the pandemic, the number of inpatient days in hospice units was affected more severely than in non-hospice units (-42.4% vs.-10.9%; P = 0.029).
CONCLUSIONS: This study suggests that hospice home care services were maintained during the COVID-19 pandemic, while the utilization of hospice inpatient care services reduced. Home care for hospice patients is an essential component of palliative care during a pandemic.
Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
IMPORTANCE: In the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a 'good death'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.
FINDINGS: In characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.
INTERPRETATION: The results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
Context/Objective: Essential indicators of high-quality end-of-life care in intensive care units (ICUs) have been established but examined inconsistently and predominantly with small samples, mostly from Western countries. Our study goal was to comprehensively measure end-of-life-care quality delivered in ICUs using chart-derived process-based quality measures for a large cohort of critically ill Taiwanese patients.
Methods: For this observational study, patients with APACHE II score =20 or goal of palliative care and with ICU stay exceeding three days ( N = 326) were consecutively recruited and followed until death.
Results: Documentation of process-based indicators for Taiwanese patients dying in ICUs was variable (8.9%–96.3%), but high for physician communication of the patient's poor prognosis to his/her family members (93.0%), providing specialty palliative-care consultations (73.3%), a do-not-resuscitate order in place at death (96.3%), death without cardiopulmonary resuscitation (93.5%), and family presence at patient death (76.1%). Documentation was infrequent for social-worker involvement (8.9%) and interdisciplinary family meetings to discuss goals of care (22.4%). Patients predominantly (79.8%) continued life-sustaining treatments (LSTs) until death and died with full life support, with 88.3% and 58.9% of patients dying with mechanical ventilation support and vasopressors, respectively.
Conclusions: Taiwanese patients dying in ICUs heavily used LSTs until death despite high prevalences of documented prognostic communication, providing specialty palliative-care consultations, having a do-not-resuscitate order in place, and death without cardiopulmonary resuscitation. Family meetings should be actively promoted to facilitate appropriate end-of-life-care decisions to avoid unnecessary suffering from potentially inappropriate LSTs during the last days of life.
BACKGROUND: Dignity is an inherent value in palliative care, but understanding dignity among people living with and hospitalized for incurable esophageal cancer has not been explored.
OBJECTIVE: The aim of this study was to empirically explore the meaning of dignity in people hospitalized with incurable esophageal cancer.
METHODS: A qualitative hermeneutic approach, inspired by Gadamer, guided the research process and interpretation of the transcribed interviews. Eighteen patients participated in the study.
RESULTS: The meaning of dignity was revealed as reverential response in care relationships and eating as an undignifying activity. A balance of the healthcare system's framework with the lifeworld of the patient was significant in preserving dignity and gave patients a sense of reverent response. Patients were unable to eat ordinary daily meals, which affected their perception of own body and identity, including interactions with others. The resulting bodily changes and social consequences were of crucial importance to the perceived dignity.
CONCLUSIONS: A dialogical and understanding approach is significant in making the patient feel worthy, consequently helping to uphold a sense of dignity. The changing and decaying body due to eating difficulties bears witness to illness, altering the individual's sense of self, in turn threatening the dignity of identity.
IMPLICATION FOR PRACTICE: The care should be based on a reverential response based on the patients' lifeworld. In doing so, storytelling might be a way. Palliative care for these people needs to stress that patients share other aspects of life that is not totally dominated by their illness, inability to eat, and unrecognizable body.
BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services.
OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death.
METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis.
RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death.
CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death.
IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
CONTEXT: The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S.
METHODS: UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership.
RESULTS: In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members.
CONCLUSION: Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.
Objective: Patients with cancer face numerous problems at the end of their lives, which makes palliative care necessary for a peaceful death. Considering the important role nurses play in the provision of end-of-life care, the present study was conducted to study the effect of a traditional training method on nurses' perception of and clinical competency in providing end-of-life care to patients with cancer in a hospital in Southeastern Iran.
Methods: This was a pilot clinical trial in which the nurses in an oncology ward were allocated to two groups, experimental (n = 24) and control (n = 33), using a table of random numbers. The experiment group received three sessions of workshop training. The nurses' perception and clinical competency were measured before and 3 months postintervention.
Results: The results showed the perception scores in the experimental and control groups to be 171.75 ± 19.54 and 170.03 ± 17.03 before education and 176.16 ± 19.54 and 176.12 ± 16.12 postintervention, respectively. The scores of clinical competency were 98.71 ± 10.24 and 99.58 ± 12.17 before education and 101.5 ± 14.67 and 104.97 ± 12 postintervention in the experimental and control groups, respectively. According to the findings, neither of the groups showed a significant difference between pre- and post-intervention in terms of perception of or clinical competency in end-of-life care.
Conclusions: A traditional training method such as workshop training cannot cause long-term improvement in nurses' end-of-life care perception or clinical competency. It seems that nurses would benefit from acquiring cognitive and behavioral skills and knowledge through a more continuous form of instruction delivered through modern blended educational methods.
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life.
METHODS: A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized.
RESULTS: Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies.
CONCLUSIONS: Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL.
IMPACT: QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication.QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant.A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life.New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life.New hypotheses for future research, guided by the current knowledge within the field.Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often failed QOL management in this population, cave the one-size-fits-all approach for individual cases.Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parentsHypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes.
BACKGROUND: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.
OBJECTIVE: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.
METHODS: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
RESULTS: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.
CONCLUSION: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.