A 11 ans, Halla perd sa soeur jumelle. Les cendres de la défunte sont ensevelies par ses parents qui annoncent à Halla qu’ils veulent planter un arbre à cet endroit. Mais la fillette, qui perd ainsi son alter ego et son miroir, est dévastée. Sa mère devient distante et froide et son père ne la comprend pas. Elle apprend seule à vivre avec cette absence.
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.
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.
BACKGROUND: While many Aotearoa/New Zealanders are receiving excellent palliative care the Pacific populations have limited access to available hospice and palliative care services. Little research has been conducted to identify barriers unique to Pacific populations accessing these services. The purpose of this study was to explore key stakeholders' perspectives on the determinants of low access among Pacific populations to these services.
METHODS: Forty-five semi-structured interviews were conducted face-to-face with hospice patients and their families, hospice/health providers and key informants from the Auckland and Wellington region of Aotearoa/New Zealand. The interviews were recorded and transcribed verbatim and a thematic analysis was carried out by identifying, coding and categorising patterns in the data. Identified themes were then discussed further to determine the relevance of the data grouped by theme.
RESULTS: Five interrelated themes affecting access emerged: perception of hospice (often negative) through lack of accurate information, but changing; families' role to look after their own and sick elderly; hospice experiences; continuity of care in the community and the need for information and communication.
CONCLUSION: Hospice and associated palliative care services are under-utilised and commonly misunderstood among Pacific populations in Aotearoa/New Zealand. There is active support following appropriate information received, hence the need for community education and culturally appropriate hospice and palliative services. Inadequate inter-professional communication contributes to polypharmacy and inefficiency in continuity of care across all levels. The Pacific individual is one component of a collective that is critical in major decisions in end-of-life and life changing situations. The findings may guide policies and further research to improve Hospice and Palliative services in Aotearoa/New Zealand.
BACKGROUND: Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies.
AIM: For this study, we asked hospitalized palliative patients and their families what they experienced as good advance care planning.
METHODS: Twenty-nine interviews were taken from patients and families, following the Tape Assisted Recall procedure of Elliot. These interviews were analyzed using content analysis based on grounded theory. To improve reliability, 3 independent external auditors audited the analysis.
RESULTS: Results show that hospitalized palliative patients and families want to have advance care planning communication about treatment and care throughout their disease and about different aspects: social, psychological, physical, practical, and medical. They prefer to have these conversations with their supervising physician. They report 4 important goals of advance care planning communication: establishing a trustful relationship with the physician, in which they feel the involvement of the physician; giving and receiving relevant information for the decision process, making a personal decision about which treatment and care are preferred; and finding consensus between the preferred decision of the physician, the patient and the family concerning the treatment and care policy.
CONCLUSION: This study can contribute to advance care planning implementation in hospital practice because it gives in insight into which elements in advance care planning patients and families experience as necessary and when advance care planning is necessary to them.
PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
OBJECTIVE: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs.
METHODS: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care.
RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described.
CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
BACKGROUND/OBJECTIVES: Hospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.
DESIGN: Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.
SETTING: Contiguous United States.
PARTICIPANTS: A total of 1,868 NHATS decedents.
MEASUREMENTS: Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.
RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.
CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness.
BACKGROUND: Critical care nurses routinely care for dying patients. Research on obstacles in providing end-of-life care has been conducted for more than 20 years, but change in such obstacles over time has not been examined.
OBJECTIVE: To determine whether the magnitude scores of obstacles and helpful behaviors regarding end-of-life care have changed over time.
METHODS: In this cross-sectional survey study, questionnaires were sent to 2000 randomly selected members of the American Association of Critical-Care Nurses. Obstacle and helpful behavior items were analyzed using mean magnitude scores. Current data were compared with data gathered in 1999.
RESULTS: Of the 2000 questionnaires mailed, 509 usable responses were received. Six obstacle magnitude scores increased significantly over time, of which 4 were related to family issues (not accepting the poor prognosis, intrafamily fighting, overriding the patient's end-of-life wishes, and not understanding the meaning of the term lifesaving measures). Two were related to nurse issues. Seven obstacles decreased in magnitude, including poor design of units, overly restrictive visiting hours, and physicians avoiding conversations with families. Four helpful behavior magnitude scores increased significantly over time, including physician agreement on patient care and family access to the patient. Three helpful behavior items decreased in magnitude, including intensive care unit design.
CONCLUSIONS: The same end-of-life care obstacles that were reported in 1999 are still present. Obstacles related to family behaviors increased significantly, whereas obstacles related to intensive care unit environment or physician behaviors decreased significantly. These results indicate a need for better end-of-life education for families and health care providers.
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
When someone is terminally ill, it is often a very stressful time for the dying person and their family. It would not be unusual for intra-family conflict, involving one or more family members and even the dying person, to occur. However, this type of conflict has not been identified as an end-of-life issue needing to be noticed and addressed or prevented when possible. This lack of attention could be because it is not known how common or how impactful this type of conflict is. A scoping research literature review was conducted for available 2004–2019 evidence on the incidence or prevalence of intra-family conflict, factors contributing to it or causing it, and the outcomes or impact of it. A search for published peer-review articles identified 18 research reports for a scoping review. The 18 studies, all conducted in developed countries, revealed intra-family conflict is often present; and with a range of harmful effects for the dying person, the family as a whole or individual family members, and other persons and organizations. The identified factors contributing to or predisposing intra-family conflict were grouped into three categories: (a) family disagreements over curative treatment and/or end-of-life care and decisions, (b) previous family conflict and other family dynamic matters, and (c) the dying process itself. The evidence identified through this scoping review, although relatively minimal, should be useful for planning future research and for raising awareness of end-of-life intra-family conflict to improve social services and palliative programs or services.
Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic disrupted the structure and process of in-patient family meetings, due to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings and performed by the palliative care service, only 2 meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, 0.96). Of the 10 unique family participants that agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate 50% of family respondents reported that the e-family meeting helped them understand their loved one’s thoughts and wishes.
Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life-sustaining treatment (WLST) and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision-making process on WLST and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end-of-life decision-making process in potential cDCD donors. Characteristics and medication use, of 409 potential cDCD donors admitted to the intensive care units (ICU), were assessed. End-of-life decision-making was made after a mean time of 97 h after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision-making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores or cerebral infections were associated with longer time to decision-making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by day- or nighttime or by the duration of the ICU stay.
This study aimed to examine family members’ attitudes and perceptions regarding their choice of care in the event of terminal illness, based on their experience in a caregiver’s role, while a loved one was terminally ill. All participants (N = 10) had cared for an immediate family member with terminal cancer. Snowball sampling was used. Qualitative data were collected through in-depth, semi-structured interviews. The data were transcribed verbatim and analyzed using thematic analysis. Five themes were identified from the data. These included two themes relating to participants’ experience of care, two themes in relation to participants’ attitudes toward the type of care they experienced and a final theme related to the role of religion and spirituality in dealing with loss. The findings of this study support the integration of multidisciplinary healthcare teams and the introduction of holistic care as early as possible within hospitals for individuals with terminal cancer, using the biopsychosocial–spiritual model.
Topic: A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices.
Clinical Relevance: Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members.
Purpose of Paper: To provide recommendations for high-quality end-of-life care for patients and family members.
Content Covered: This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and [about] 1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal palliative care is a growing field mainly based on family conferences. The prenatal care setting is unique and differs from postnatal and adult care. There are no descriptions of family conferences in prenatal palliative care. The descriptions of themes that emerge from the prenatal care conference charts may guide professionals in this delicate task, and help determine the causes of suffering and identify family values before the birth of the infant.
Aim: To perform a content analysis of medical records of family conferences and to describe the main themes observed during prenatal palliative care follow-up after the diagnosis of a life-limiting fetal condition.
Design: This is a retrospective study of medical records of family conferences from a perinatal palliative care group, the GAI group, between May 2015 and September 2016.
Setting/Participants: Families with estimated perinatal mortality >50% and eligibility for follow-up at our tertiary fetal medicine center were enrolled. We included women who participated in at least one family conference with the GAI group and who had given birth at the clinic or delivered at another center and returned for the postnatal family conference.
Results: Fifty women met the inclusion criteria. Five main themes and 18 categories emerged from the charts and are described in detail. A model of follow-up in prenatal palliative care is proposed based on the themes and categories identified.
onclusions: This analysis may guide health professionals who seek to better identify family needs and values and organize follow-up during prenatal palliative care.
Background: Lung cancer has a high impact on both patients and relatives due to the high disease burden and short life expectancy. Previous studies looked into treatment goals patients have before starting a systemic treatment. However, studies on relatives’ perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one.
Methods: we conducted a structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals, between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment as part of usual care (chemotherapy, immunotherapy or targeted therapy with tyrosine kinase inhibitors (TKIs) and who completed a questionnaire on their treatment goals before the start of treatment and when treatment was finished. We asked the relatives about the achievement of patients’ treatment goals and relatives’ satisfaction with the choice to start treatment. This study is part of a larger study in which 266 patients with metastatic lung cancer participated who started a systemic treatment and reported their treatment goals before start of the treatment and the achievement of these goals after the treatment.
Results: Relatives reported the goals ‘quality of life’, ‘decrease tumour size’ and ‘life prolongation’ as achieved in 21, 37 and 41% respectively. The majority of the relatives (78%) were satisfied with the choice to start a treatment and even when none of the goals were achieved, 70% of the relatives were satisfied. About 50% of relatives who were satisfied with the patients’ choice mentioned negative aspects of the treatment choice, such as the treatment did not work, there were side effects or it would not have been the relatives’ choice. Whereas, 80% of relatives who were not satisfied mentioned negative aspects of the treatment choice. The most mentioned positive aspects were that they tried everything and that it was the patient’s choice.
Conclusion: The majority of relatives reported patients’ treatment goals as not achieved. However, relatives were predominantly satisfied about the treatment choice. Satisfaction does not provide a full picture of the experience with the treatment decision considering that the majority of relatives mentioned (also) negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about the chance of success and the possible side effects of the treatment.
A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Four themes were identified: (1) Patients: The caregivers respected the patients’ willingness and did not want to make them feel like “giving up.” (2) Caregivers’ self: They did not want to intensify the patients’ suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members’ opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals’ supports to deal with the concerns from patients and other family members as well as their emotional reactions.