OBJECTIVES: This study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.
DESIGN: This was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.
SETTING: All interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.
PARTICIPANTS: We purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.
RESULTS: Critically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as 'palliative care' and 'end-of-life care'. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients' deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.
CONCLUSIONS: Despite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients' preferences.
BACKGROUND: Structured advance care planning (ACP) program is an important service in the end-of-life care for patients with advanced medical illness. We pioneered a structured and coordinated ACP program for patients with advanced malignancies and end-stage organ failure in Hong Kong. This study investigated the impact of a structured ACP program on the concordance rate for patients' final wishes, patient/family satisfaction, and the number of acute admissions (AA) and length of stay (LOS) in hospital.
METHODS: Patients with advanced malignancy or end-stage organ failure who were able to complete ACP forms during the current admission to medical units were recruited. Patients who could not complete ACP forms or <18 years of age were excluded. The ACP program comprised the following components: (I) baseline education (workshop/role play) in ACP sessions for linked nurses of different medical units; (II) structured ACP discussions with recruited patients and their proxies during admission, after any change in clinical status, and also at monthly intervals; (III) formal structured review of patients' goals at regular team meetings; (IV) "flagging" of advance directive (AD) in hospital computer system and (V) feedback to linked nurse on the congruence of care. Mentally competent patients who did not receive ACP and matched for disease and demographics were selected as controls in a 1:2.5 ratio.
RESULTS: Two hundred forty-three patients were included for analysis between August 2016 and July 2017, of which 69 patients joined the ACP program and 174 of them did not. Two hundred and one patients (83%) had advanced cancer. All had done do-not-attempt-cardiopulmonary-resuscitation (DNACPR) order in the ACP group. The concordance rates for patients' wishes on quality of life, end-of-life and funeral arrangements were 95%, 100% and 100% respectively. Over 70% of patients and their families (N=10) showed satisfaction with the program. The ACP group also had lower mean AA and shorter LOS (0.78±0.23 vs. 1.2±0.8 episode/patient, 4.6±1.7 vs. 7.5±2.5 days, P=0.037 and P=0.023 respectively) in the last 3 months of life compared with the non-ACP group.
CONCLUSIONS: This ACP program achieved high concordance rate for patients' wish items and reduced healthcare utilization.
Introduction : Il n’existe que peu de données dans la littérature actuelle sur la manière dont les médecins généralistes vivent le décès de leurs patients. Les principales études sur le sujet sont des travaux qualitatifs. Il manque de travaux quantitatifs pour en dresser un état des lieux exhaustif. L’objectif de cette étude est d’analyser les décès des patients vécus comme difficiles par leur médecin généraliste.
Matériel et méthode : Il s’agissait d’une étude épidémiologique descriptive quantitative transversale. La population étudiée était celle de l’ensemble des médecins généralistes libéraux de la région Nouvelle-Aquitaine. Le critère de jugement principal était le pourcentage de médecins généralistes vivant difficilement le décès de leurs patients.
Résultats : Dans cette étude, 76 % des médecins généralistes vivaient comme difficile le décès de leurs patients. Ils étaient 29 % à ressentir le besoin d’être aidés dans cette situation. Le retentissement professionnel et personnel était présent chez respectivement 37 % et 31 % des médecins. La consommation de médicaments survenait dans 4,8 % de ces situations, celle d’alcool dans 4 % des cas. Les structures d’aides aux généralistes étaient insuffisantes pour 57 % d’entre eux.
Discussion et perspectives : Cette étude a mis en évidence que les médecins généralistes sont très affectés par les décès de leurs patients. Le retentissement émotionnel est intense et pourrait influer sur les soins apportés aux patients. Ces situations sont source de difficultés au cours de l’exercice professionnel comme dans la vie personnelle. Les structures d’aide existantes sont très insuffisantes et méconnues.
Conclusion : Cette étude a permis de dresser un état des lieux de la souffrance des médecins généralistes lors du décès de leurs patients. Il est nécessaire de mieux accompagner les médecins dans cette situation.
Dignity has gained increasing attention as a vital component of quality of life and quality of end-of-life care. This article reviews psychological, spiritual, existential, and physical issues facing patients at the end of life as well as practical considerations in providing therapy for this population. The authors reviewed several evidence-based treatments for enhancing end-of-life experience and mitigating suffering, including a primary focus on dignity therapy and an additional review of meaning-centered psychotherapy, acceptance and commitment therapy, and cognitive-behavioral therapy. Each of these therapies has an emerging evidence base, but they have not been compared to each other in trials. Thus, the choice of psychotherapy for patients at the end of life will reflect patient characteristics, therapist orientation and expertise with various approaches, and feasibility within the care context. Future research is needed to directly compare the efficacy and feasibility of these interventions to determine optimal care delivery.
PURPOSE: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation.
METHODS: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted.
RESULTS: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced.
CONCLUSION: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.
Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training.
Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets.
Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP.
Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.
BACKGROUND: Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers.
METHODS: Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out.
RESULTS: Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness.
CONCLUSIONS: The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.
OBJECTIVE: End-of-life (EOL) care is a developing concept in India, with well-established practices in certain states like Kerala, but not in all the states. As there is a substantial stigma associated with death discussion across the Indian population, the experiences of caregivers of people with advanced cancer have not been explored. Our aim in this study was to explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals' death.
METHODS: An exploratory study where the caregivers (n = 108) of advanced cancer patients, who died either during hospitalization or at home, were interviewed to assess quality of death (QOD), using an open-ended question to explore the sufferings of the patients in the final days and caregivers' coping mechanism.
RESULTS: Majority of the patients died at home (n = 79, 73.1%). The thematic analysis of the transcripts resulted in seven sub-themes, which were categorized under four major themes, namely 'bodily discomfort', 'psychological experiences' with the sub-themes resilience and existential distress, 'awareness of prognoses' with the sub-themes aware, unaware and conjecture, and 'carers coping' with the sub-themes perceived strain and contentment.
CONCLUSION: Patients under EOL care experience physical and psychological suffering, as reported by the caregivers. Efforts must be undertaken to reduce suffering by means of improving focus on and strengthening symptom management and enhancing psychosocial support, for optimally utilizing the available interventions to manage the physical symptoms and to address the psychosocial issues.
BACKGROUND: Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making.
AIMS: To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it.
METHODS: Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations.
RESULTS: Of the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place.
CONCLUSION: Although mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.
BACKGROUND: Palliative care is an approach that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In order to effectively deliver palliative care, patient and caregiver priorities need to be incorporated in advanced cancer care.
AIM: This study identified experiences of patients living with advanced colorectal cancer and their caregivers to inform the development of an early palliative care pathway.
DESIGN: Qualitative patient-oriented study.
SETTINGS/PARTICIPANTS: Patients receiving care at two cancer centres were interviewed using semistructured telephone interviews to explore their experiences with cancer care services received prior to a new developed pathway. Interviews were transcribed verbatim, and the data were thematically analysed.
RESULTS: From our study, we identified gaps in advanced cancer care that would benefit from an early palliative approach to care. 15 patients and 7 caregivers from Edmonton and Calgary were interviewed over the phone. Participants identified the following gaps in advanced cancer care: poor communication of diagnosis, lack of communication between healthcare providers, role and involvement of the family physician, lack of understanding of palliative care and advance care planning.
CONCLUSIONS: Early palliative approaches to care should consider consistent and routine delivery of palliative care information, collaborations among different disciplines such as oncology, primary care and palliative care, and engagement of patients and family caregivers in the development of care pathways.
Premature discussions of patients' rights or duties to death must be put aside to focus first on whether death injures the patient who dies. Comparativism argues that dying does have impact on this individual, then it may alter our arguments on duties or rights to die, as well as on how and whether we should make end of life decisions for others. If Comparativism is correct, then there are large ramifications for ethics, medicine, and public health. Unfortunately for Comparativism, its incorporation of intuitions and possible worlds gives it the same undermining biased world problem encountered by Moore's isolation test for intrinsic value. Imagining/referring to a possible world whilst in this one merely creates the illusion that a decedent's death can benefit or injure her. When we select possible worlds or fill in their missing states of affairs, we can often impose our own biases into the thought experiment. Thinking about fictions is useful in figuring out what we should do and be, as well as evaluating what others did and were, but medical practice and policy affecting end of life issues in bioethics should always be based on reality and not subjective partiality.
Background: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers.
Methods: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis.
Results: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful.
Conclusion: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.
Introduction: La transfusion de concentrés plaquettaires en fin de vie en onco-hématologie ne fait pas l’objet de recommandations et dépend des représentations partagées par les patients, les infirmiers et les hématologues. L’objectif de cette étude est de décrire ces représentations de la transfusion plaquettaire dans un contexte d’hémopathie grave et avancée à travers les représentations sociales de ses protagonistes.
Méthodes: Une étude qualitative, utilisant la méthode du réseau d’association et incluant trois groupes de 15 participants (patients en phase avancée d’une hémopathie maligne, régulièrement transfusés en plaquettes, infirmiers et médecins) issus de quatre centres d’hématologie a été conduite entre février et avril 2019. L’analyse a été réalisée avec le logiciel IraMuTeQ.
Résultats: Les patients attendent de la transfusion plaquettaire un impact bénéfique direct sur leur santé et mettent en avant l’importance de la relation humaine. Les infirmiers visent le bien-être du patient, dans son individualité, et le respect du protocole transfusionnel. Les médecins cherchent à soulager les symptômes en prenant en compte une multitude de facteurs décisionnels. La classification hiérarchique descendante permet de nuancer les résultats précédents en individualisant quatre orientations différentes, indépendantes des groupes de participants : la dépendance, la singularité, la subjectivité et la neutralité.
Discussion: La perception des représentations sociales liées à la transfusion plaquettaire en fin de vie devrait permettre d’adapter le discours à l’orientation préférentielle de son interlocuteur et constituer un atout dans la discussion des objectifs de soins avec les patients, comme entre professionnels de santé.
BACKGROUND: One of the poorest countries in the world, Malawi's palliative care system is under-resourced, and one-third of the population is food-insecure.
AIMS: This study describes the lived experience of female palliative care patients, and their caregivers, and aimed to: (1) analyse their physical, spiritual and mental health needs; and (2) analyse best palliative nursing practice for patients at the end of life. An unexpected finding was the impact of food insecurity on the women and their caregivers.
METHODS: We conducted interviews with 26 women who at the end of life and 14 of their caregivers. All were participating in a community palliative care programme offered by an AIDS support organisation in Kasungu, Malawi. We used deductive qualitative analysis to organise identified themes using the four pillars of food security: availability, access, utilisation and stability.
FINDINGS: All study participants experienced challenges with food security.
CONCLUSIONS: We offer policy recommendations for palliative care nurses, and other allied health professionals.
INTRODUCTION: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients' subjective experiences.
DESIGN: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit.
RESULTS: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences.
CONCLUSIONS: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.
OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).
DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.
SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.
RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill."
CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
CONTEXT: We reviewed the Veterans Health Administration (VHA) Bereaved Family Survey's (BFS) open-ended responses to understand end of life care (EOL) best practices for Vietnam and pre-Vietnam Veterans.
OBJECTIVES: To identify: 1) recommendations for improved EOL care enhancements for older Veterans 2) a model of best practices in EOL care for Veterans, and 3) any relevant differences in best practices between Vietnam and prior war eras.
METHODS: We examined five years of BFS data (n=2,784), collected between 2013 and 2017, from bereaved family members of Veterans focusing on 2 open-ended questions: 1) Is there anything else you would like to share about the Veteran's care during his last month of life? 2) Is there anything else you would like to share about how the care could have been improved for the Veteran? Applied thematic analysis identified successes and challenges in the experience of the bereaved of Vietnam and pre-Vietnam era Veterans.
RESULTS: Regardless of war era and death venue, a patient-centered approach to EOL care with readily available staff who: 1) provide ongoing support, comfort, honor, and validation; 2) routinely adjust to the patient's changing needs; 3) and provide clear, honest, timely, compassionate communication, was important to the bereaved. Consideration of the uniqueness of Vietnam Veterans is beneficial.
CONCLUSIONS: Patient-centered EOL care should include assigning a point of contact that follows the patient, educates the family on expectations, ensures the patient's changing needs are met, ensures the family has appropriate support, and communicates updates to family throughout the patient's care continuum.