Palliative Care Family Research Articles

Building Bridges for "Palliative Care-in-Place": Development of a mHealth Intervention for Informal Home Care.

BackgroundIn Palliative Care (PC), family and close people are an essential part of provision of care. They assume highly complex tasks for which they are not prepared, with considerable physical, psychological, social and economic impact. Informal Caregivers (ICs) often falter in the final stage of life and develop distress, enhancing emotional burden and complicated grief. The lack of available and accessible in-person counselling resources is often reported by ICs. Online resources can promote early access to help and support for patient-IC dyads in palliative care. The primary aim of this research is to co-design, develop and test the feasibility of the Help2Care-PAL mHealth app that addresses the needs of ICs of palliative patients cared for at home. This Digital Health Intervention (DHI) in palliative care will be used for education, symptom management, communication and decision-making, to enhance Quality of Life (QoL) of patients and ICs, fostering anticipatory grief and the reach and efficiency of services.MethodsThis study will use an iterative co-design process and convergent mixed-methods design, following the MORECare consensus for developing a complex intervention. Construction of the DHI will follow four main phases: (I) a needs assessment (a cross-sectional survey, individual interviews with ICs and focus groups with professionals with community palliative care experience); (II) design and co-production of mHealth materials and interventions to support ICs; (III) the development of a mHealth app; and (IV) usability and feasibility of the mHealth app. The Help2Care-PAL platform seeks to build resources from the perspectives and needs of both family dyads and nursing professionals working in the field of community palliative care. User-centeredness will be ensured by the active participation of patient-IC dyads and professionals of the palliative care community.DiscussionThis mixed-method study will offer new insights on needs and expectations of patient-IC dyads and nurses in community palliative care regarding caregiving preparedness and online health resources. Through the implementation of an adaptive digital tool, we aim to improve access to palliative care family support, which is highly linked with the wellbeing of patients and especially new ICs.

Response to: 'Medical consent; striking the right balance between shared decision-making and shared responsibility': a win-win scenario if done well.

We read with great interest your article ‘Medical consent; striking the right balance between shared decision-making and shared responsibility’.1 It beautifully highlights the balance of shared decision and shared responsibility. The case scenarios dealing with such issues are often faced by doctors leaving them perplexed and unsure. Coronavirus disease 2019 (COVID-19) has further created severe dilemmas and unanswered ethical complexities for the patient management. The grief and anxiety of caregivers are further accentuated by isolation and social pressure. The challenges are even more when patients on palliative care develop severe COVID. Each situation has unique personalized dilemmas and needs appropriate model of care.1–4 The complex decision-making involves the need to balance the right medical decision while empathizing personal choices of the patient with aim for a holistic care of physical, psychological and social health of the patient.2 Every such experience can be unique and contribute to evolving our patient care. We share our experience of a challenging situation in COVID intensive care unit (ICU) when a 14-year-old girl with osteosarcoma bone with lung metastasis was transferred to ICU for severe COVID-19 infection. The challenging situation posed several doubts like fears of ending life away from the family members in hospital versus no treatment at home for severe COVID. The situation in our case was further scarred by the need for critical care unit for rapidly worsening oxygen requirements and an X-ray (Figure 1) revealing a white out lung which prognosticated towards grim outlook. A team of ICU specialists, paediatricians, palliative care physicians and family together decided to make a shared decision. A shared decision to avoid aggressive procedures was planned and she was managed with active conservative management. Oxygen therapy and respiratory support with high flow nasal cannula and non-invasive ventilation were provided. Beyond regular care, a regular video call with the family was arranged for her. Several personalized collective measures were taken to keep the child motivated and involved like encouraging her to pursue her hobby to paint. She would paint cards for her family members every day. A combined effort by family, physicians and nursing staff could finally salvage the girl and discharge her home. We share this experience to highlight the need of timely management, shared discussion and team effort for successful outcome in severe disease. The delicate balance between shared responsibilities can be challenging and successful stories can evolve our understanding in striking the correct balance!

Cuidados paliativos pediátricos em enfermagem: ressignificação a partir de uma revisão integrativa

The aim was to promote reflections, based on the bibliographic survey, in relation to death and dying and care and caregivers. Integrative literature review through the Virtual Health Library platform, carried out in August 2021. Thirteen articles were analyzed that met the determined inclusion criteria. Among the selected articles, the national studies covered 76.92% of the theoretical framework used and the approaches mainly emphasized the need for inclusion and active participation of the whole family in palliative care, the indispensability of strengthening the nurse's bond with his client and the autonomy of this professional through internal and/or ethical dilemmas. It is concluded that the implementation of palliation education for nursing students and nurses should receive greater emphasis in order to provide means for the personal and professional growth of these individuals.

A Qualitative Study of the Impact of COVID-19 on Hospice and Home-Based Palliative Care in Taiwan

COVID-19 has had a tremendous impact on individuals and health care, particularly among those with serious illnesses. Although Taiwan initially reported low rates of COVID-19 (20.7 cases per million in 2020), by early 2021 the Alpha variant began spreading in Taiwan, which went into a soft lockdown from May to July. This study aimed to investigate the impact of COVID-19 on Hospice and Home-Based Palliative Care (HBPC) patients, family, and medical team member in Taiwan during different COVID-related time points. From November 2020 to May 2021, we conducted semi-structured interviews with 2 patient, 5 caregivers, and 8 medical team members in the hospice and HBPC setting to elicit their views about the impact of COVID-19 on care. Content analysis was used to guide the analysis of themes. Two researchers independently coded transcripts and met to reconcile codes. Results showed varying impact across the time points. In 2020, patients, caregivers, medical team members felt little impact of COVID-19. However, in 2021, HBPC caregivers reduced the frequency of HBPC visits to lower the household COVID-19 infection risk. Hospice and HBPC team members reported that more caregivers selected HBPC over hospice. They also observed an increase in complicated grief among family survivors following the soft lockdown. The impact of the pandemic on homecare provision increased as prevalence of COVID-19 increased, impacting care and quality of hospice and HBPC. Further research is needed to better understand the impact of the pandemic on the quality of hospice /HBPC and grief experiences.

Developing Successful Palliative Care Teams in Rural Communities: A Facilitated Process.

Background:Developing palliative care (PC) programs in rural settings is challenging due to limitations on training, staff, resources, and reimbursement. Employing established frameworks and processes can assist rural communities in developing quality PC programs.Objective:We sought to employ a facilitated community-centric planning process to guide several rural community teams across three states in the United States to support PC program development.Materials and Methods:This is a prospective, observational, quality improvement initiative implemented over 18–24 months.Results:A total of 17 community teams volunteered to participate in the process and completed initial assessments that identified gaps in clinical PC skills in several aspects of PC, including bereavement care, care continuity, pain and symptom management, and communication with family. Teams also identified barriers to optimizing PC for patient and families, including limited community awareness, poor reimbursement mechanisms, lack of resources and experience with PC, and inadequate care coordination. All 17 community teams developed and worked on implementation of a community-specific action plan to develop PC services. However, due to staff capacity limitations imposed by COVID-19, only eight communities completed a follow-up assessment in late 2020. These teams showed some improvement in knowledge of multiple PC domains as a result of the process and provided qualitative feedback indicating that the process was helpful in building capacity to offer needed services and developing the skills and workflows necessary to support delivery of PC.Conclusion:This unique development process can help rural communities organize, develop, and sustain PC programs and overcome common barriers to providing PC.

Hopeful dying? The meanings and practice of hope in palliative care family meetings

Hope can carry considerable allure for people facing imminent mortality and for those who care for them. Yet, how hope is variously and relationally (re)produced within end-of-life care settings, remains under-researched. In this study, we aimed to better understand hope as it circulates within palliative care, drawing on video recorded family meetings and pre- and post-meeting qualitative interviews, within two hospitals in Queensland, Australia. Our findings highlight family meetings as an important site for articulations of hope and hopefulness. The results illustrate how hope is recalibrated within the transition to and through palliative care, the tensions between hope and futility, and the work of hope in discussions of goals and expectations. Through our analysis we argue that hopefulness within family meetings, and in palliative care more broadly, is collectively produced and opens up discourses of hope to the lived experience of terminality. Attending to the nuances of hope, including moving beyond the determinative (hope for more life/hope for a quick death), can elucidate the possibilities and problems of the collective negotiation of hope at the end of life, including how hope can be drawn on to express support and solidarity.

End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life.

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outside of "business hours." Methods:N = 786 PPC patients at a single center died between 2008 and 2015. Descriptive statistics were prepared for all variables (Wilcoxon rank-sum test for continuous; chi-square or Fisher's exact test for categorical). Results:N = 434 (55%) of deaths occurred outside of business hours; n = 332 (70%) were attended by PPC. Time spent attending a death was not significantly longer when other PPC providers were present but was when certain tasks were performed (coordination with medical examiner and memory making). Conclusion: The occurrence of the majority of deaths outside of business hours has significant implications for service delivery models, provider emotional health, and health care value.

Advocating for Palliative Care Families in the Context of Simon’s Law in Missouri and Kansas

Advocating for Palliative Care Families in the Context of Simon’s Law in Missouri and Kansas

The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis

Background Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Objective and Methods Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Results The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. Conclusions The 5 themes provide 6 constructs for independent intervention. Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.

Shared Decision-Making in Palliative Care: A Maternalistic Approach.

During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches.

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

Forgiveness facilitation in palliative care: a scoping review.

The objective of this review is to map the nature and extent of forgiveness facilitation intervention implemented and evaluated in palliative care contexts. Spiritual beliefs often include reconciliation and forgiveness, which are critical to patients and families in palliative care. Forgiveness facilitation can represent a valuable response as a multidisciplinary and non-pharmacological intervention to reduce suffering. Studies including palliative care patients aged 18 years or over and assisted by palliative care teams, including all healthcare professionals, chaplains, and volunteers, were included in this review. This scoping review is based on JBI methodology. The search was conducted in June 2017 and updated in December 2018 using international databases and gray literature in English, Spanish, German, Italian, and Portuguese. A total of 23 articles were included in this review. The results suggest a growing interest in forgiveness facilitation in palliative care in different spiritual and religious traditions. Most studies are based on a psychological perspective. Several activities related to the intervention have been identified, but few details or characteristics are described. Social workers, nurses, doctors, and psychologists were most identified as healthcare staff involved in forgiveness facilitation. The outcomes related to the intervention are mental, physical, and relational well-being; quality of life, decision-making and communication; self-esteem and hope; depression, anger, and anxiety; and inner peace. Forgiveness facilitation is critical in palliative care and is grounded in a multidisciplinary approach, but further evidence is needed to inform clinical implementation. These results open new perspectives for research and training on palliative healthcare staff.

Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study.

BackgroundIn the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important.ObjectiveWe aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach.MethodsFamily conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020.ResultsFrom February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%).ConclusionsSmartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.

Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals

Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child.What is Known:• Anticipating the future in pediatric palliative care occurs infrequently and too late.What is New:• Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job.• Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.

192 Efficacy of a Novel Re-Training of Ophthalmology Residents as Palliative Care Extenders in the Emergency Department during the COVID-19 Surge

During the COVID-19 surge in New York City, our hospital system put in place a 24-hour helpline to connect Emergency Department (ED) physicians to Palliative Care specialists. During the surge of critically ill COVID-19 patients, there was concern that large volumes, high acuity, and the need to wear protective equipment, were barriers to ED physicians calling the helpline. To address this concern, we placed ophthalmology residents in the ED from 8am to 11pm each day to act as palliative care extenders, helping connect ED physicians, Palliative Care physicians, patients and families. Ophthalmology residents were chosen for this role due to their clinical expertise and availability after the cessation of elective surgeries during the state of emergency. We sought to evaluate the number of palliative care connections made with this model. We performed a retrospective review of admissions from the acute areas of our ED from April 6, 2020 to April 19, 2020. During the first week, only the 24-hour helpline was available. During the second week, both the palliative care helpline and in-situ residents were available. Number of palliative care notes from the ED were compared before and after the intervention. In the week when only the helpline was available, 443 ED visits occurred, of which 169 (38.1%) were admitted and 10 (5.9%) had palliative care notes written in the ED. In the week when both the helpline and in-situ residents were available 464 ED visits occurred, of which 131 (30.0%) were admitted and 36 (27.4%) had palliative care notes written in the ED. Compared to a helpline alone, in situ palliative care presence in the ED increased the opportunity for early palliative care intervention, as reflected by an increase in the number of palliative care notes written in the ED. This model was an effective re-tasking of specialized health care practitioners from a specialty that was less strained by the pandemic to one that was under pressure.

Reinventing Palliative Care Delivery in the Era of COVID-19: How Telemedicine Can Support End of Life Care.

Telemedicine technology has become essential to healthcare delivery in the COVID-19 era, but concerns remain regarding whether the intimacy and communication that is central to high-quality palliative care will be compromised by the use of this technology. We employed a business model approach to identify the need for system innovation in palliative care, and a quality improvement approach to structure the project. Products from this project included a standard operating procedure for safe use of tablet computers for inpatient palliative care consultations and family visitations; tablet procurement with installation of video telehealth software; and training and education for clinical staff and other stakeholders. We describe a case illustrating the successful use of palliative care telehealth in the care of a COVID-19-positive patient at the end of life. Successful use of video telehealth for palliative care involved overcoming inertia to the development of telehealth infrastructure and learning clinical video telehealth skills; and engaging front-line care staff and family members who were open to a trial of telehealth for communication. Information gleaned from family about the patient as a person helped bedside staff to tailor care toward aspects meaningful to the patient and family and informed best practices to incorporate intimacy into future palliative video consultations and family visit.

Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care

BackgroundDespite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as “places of death” as opposed to “places of life” meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC.MethodsA qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants.ResultsA total of 242 h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us.ConclusionThe complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.

Palliative medicine family conferences and caregiver psychological distress during prolonged mechanical ventilation

ObjectivesLittle is known about the experience of family caregivers of patients who require prolonged mechanical ventilation (PMV). We examined the perspectives of caregivers of patients who died after PMV to...

Ethical Aspects of the Non-Resuscitation Discussion with the Patient and Its Family in Palliative Care

Ethical Aspects of the Non-Resuscitation Discussion with the Patient and Its Family in Palliative Care

Australian Standards for Working with the Family in Palliative Care: Experiences from Practice concerning Implementing Organisational Change

Článek zprostředkovává praktickou zkušenost s organizační změnou multidisciplinárního týmu domácí hospicové péče v podobě zavádění australských standardů pro příjem pacienta do domácí hospicové péče. Cílem první fáze výzkumné části bylo zmapovat stávající praxi příjmu pacienta do domácí hospicové péče, identifikovat potřeby týmu a připravit půdu pro implementaci organizační změny. Na základě získaných dat byly v týmu konsensuálně vybrány čtyři standardy pro příjem pacienta, které byly v další fázi implementovány po dobu tří měsíců do praxe. Poslední fáze spočívala ve společné reflexi implementačního procesu. Předkládaný článek podrobně popisuje všechny dílčí fáze z pohledu praktické zkušenosti, na závěr pak předkládá doporučení, ze kterých mohou čerpat i jiné organizace při optimalizaci postupu práce v týmech domácí hospicové péče.