Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Ce numéro de la revue est consacré à la philosophie de terrain définie comme rapport entre réalité et pensée et comme spécificité de l’activité philosophique. Sont abordés la revendication contemporaine d’une philosophie impliquée, une philosophie de terrain en lien avec la pensée canguilhémienne des normes individuelles, l’accompagnement de la fin de vie ou encore la recherche en éthique clinique.
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/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.
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: 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.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
Conflict is an important consideration in the intensive care unit (ICU). In this setting, conflict most commonly occurs over the 'best interests' of the incapacitated adult patient; for instance, when families seek aggressive life-sustaining treatments, which are thought by the medical team to be potentially inappropriate. Indeed, indecision on futility of treatment and the initiation of end-of-life discussions are recognised to be among the greatest challenges of working in the ICU, leading to emotional and psychological 'burnout' in ICU teams. When these disagreements occur, they may be within the clinical team or among those close to the patient, or between the clinical team and those close to the patient. It is, therefore, crucial to have a theoretical understanding of decision-making itself, as unpicking misalignments in the family's and clinical team's decision-making processes may offer strategies to resolve conflict. Here, we relate Kahneman and Tversky's work on cognitive biases and behavioural economics to the ICU environment, arguing that these biases could partly explain disparities in the decision-making processes for the two conflicting parties. We suggest that through the establishment of common ground, challenging of cognitive biases and formulation of mutually agreeable solutions, mediation may offer a pragmatic and cost-effective solution to conflict resolution. The litigation process is intrinsically adversarial and strains the doctor-patient-relative relationship. Thus an alternative external party should be considered, however mediation is not frequently used and more research is needed into its effectiveness in resolving conflicts in the ICU.
OBJECTIVE: The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.
METHODS: Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.
RESULTS: Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered.
CONCLUSION: This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.
The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as “life changing” and “healing.” As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.
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.
Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
BACKGROUND: Antimicrobials are frequently prescribed to terminally-ill patients with cancer; however, physicians' practice patterns regarding antimicrobial use vary widely. This study aimed to systematically identify factors that determine physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer.
METHODS: A nationwide cross-sectional survey involving 600 oncologists, 600 infectious diseases physicians, 600 palliative care physicians, and 220 home care physicians was conducted between November 2017 and January 2018. The primary endpoint was physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer with a few weeks of prognosis. Physicians' beliefs regarding management of infectious diseases as well as physician-perceived 'good death' were also assessed (1=strongly disagree-6=strongly agree).
RESULTS: There were 895 (44.3%) analyzable response, and average scores of physicians' attitudes ranged between 2.69 and 4.32 In total, 241 (27%; 95%CI=24-30) to 691 (78%; 95%CI=75-81) respondents showed proactive attitudes toward various infectious diseases management. In linear regression analysis, determinants of proactive attitudes included: physicians' belief that examination and treatment will improve quality of life and prognosis and reduce suffering (ß=0.32, t=9.99, p=0.00); greater physician-perceived importance on receiving enough treatment (ß=0.09, t=2.88, p=0.00) and less importance on dying a natural death (ß=-0.07, t=-2.14, p=0.03) for a 'good death'; working at a tertiary care hospital (ß=0.16, t=4.40, p=0.00); and not being a home care physician (ß=-0.20, t=-5.51, p=0.00) or palliative care physician (ß=-0.12, t=-3.64, p=0.00).
CONCLUSIONS: Physicians have divergent attitudes toward the management of infectious diseases in terminally-ill patients with cancer. Reflection by physicians on their own beliefs and perceptions regarding infectious disease management and a 'good death' may help provide the best end-of-life care.
OBJECTIVE: Schizophrenia is a severe and persistent mental illness with profound effects on patients, families, and communities. It causes immense suffering on personal, emotional, and socioeconomic levels. Individuals with schizophrenia have poorer health outcomes and die 10-20 years younger than the general population. Economic costs associated with schizophrenia are substantial and comprise 2.5% of healthcare expenditures worldwide. Despite psychosocioeconomic impacts, individuals with schizophrenia are subject to inequitable care, particularly at end of life. A systematic review was conducted to examine disparities in end-of-life care in schizophrenia and identify factors that can be targeted to enhance end-of-life care in this vulnerable population.
DESIGN: A comprehensive search was conducted using the databases Ovid MEDLINE(R), Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus from 2008-2018. Keywords included schizophrenia, palliative, end-of-life, and hospice. Two authors independently reviewed titles and abstracts; disagreements were resolved by consensus.
RESULTS: The search identified 123 articles; 33 met criteria: 13 case reports, 12 retrospective studies, 5 literature reviews, and 3 prospective studies. Articles were divided into major themes including healthcare disparities, ethics, and palliative care. Palliative care was the most frequent theme comprising >50% of the articles, and there was considerable thematic overlap with ethics and palliative care. Almost half the articles (45%) were related to schizophrenia and comorbid cancer.
CONCLUSIONS: Increased awareness of potential healthcare disparities in this population, creative approaches in multidisciplinary care, and provision of adequate palliative services and resources can enhance end-of-life care in schizophrenia.
Objective: We examined whether older adults' health and well-being during their final year of life predicts end-of-life (EOL) quality of life (QOL) and quality of care (QOC).
Methods: Using data from deceased participants (n = 1125) in the 2011-2015 National Health and Aging Trends Study, we performed latent class analysis to identify profiles of health and well-being, and we examined the association between these classes and EOL QOL and QOC.
Results: Four classes were identified: healthy/happy (20%), frail/happy (37%), cognitively impaired/moderately distressed (27%), and highly impaired/highly distressed (16%). Persons in the highly impaired/highly distressed class showed a poorer QOL at the EOL, whereas those in the healthy/happy class reported a lower level of QOC at the EOL.
Discussion: The benefits of maintaining health and well-being often carry forward to EOL. Older adults with high impairment and distress merit greater attention such as assuring care and advance care plans.
CONTEXT: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).
OBJECTIVES: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.
METHODS: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006-2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multi-stage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.
RESULTS: 110/114 parents responded to open-ended items; 63% (n=69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) prior to death. 71% (n=78/110) had palliative care involvement and 65% (n=69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond 'readiness' for their child's death. Three domains emerged that contributed to parents' lack of preparedness: (1) chronic illness experiences; (2) pretense of preparedness; and (3) circumstances and emotions surrounding their child's death.
CONCLUSIONS: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond 'readiness.' More research is needed to identify supportive elements among parents facing their child's EOL.
BACKGROUND: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.
OBJECTIVE: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.
METHODS: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.
RESULTS: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.
CONCLUSIONS: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.
INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.
METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.
ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.
Hepatocellular carcinoma is a common cancer with a poor prognosis, associated with high economic costs and a significant burden of disease. While it is often asymptomatic in the early stages, patients may experience great discomfort from advanced disease, treatment adverse effects or decompensation of underlying cirrhosis. Palliative care has the potential to markedly improve quality of life, physical and psychological symptoms in patients with end-stage liver disease, and has been shown to prolong survival in some non-hepatocellular carcinoma malignancies. However, this service is underutilized in hepatocellular carcinoma and referrals are frequently late due to factors such as stigmatization, inadequate resources, lack of education for non-palliative care physicians and inadequate modelling for integration of palliative and supportive care within liver disease services. In the future, education workshops, population-based awareness campaigns, increased funding and improved models of care, may improve the uptake of palliative care and subsequently optimize patient care, particularly towards the end of life.