Investigation of Student Nurses’Attitudes towards End-of-Life Care and Their Influencing Factors

Background: This cross-sectional investigative study aimed to determine student nurses’ attitudes towards end-of-life care. Methods: This study used a descriptive research design with stratified sampling to survey student nurses enrolled in one of four nursing colleges in China from January 2023 to December 2023. Student nurses’ general demographic and prior related information, attitudes towards death and attitudes towards end-of-life care were determined using a general information questionnaire, the Death Attitude Profile—Revised scale and the Professional End-of-Life Attitude Scale (PEAS), respectively. Results: The total PEAS score was 122.91 ± 16.123. Significant differences were noted in the attitude towards end-of-life care scores according to sources of end-of-life care knowledge (P Conclusions: Student nurses lacked an optimistic attitude towards end-of-life care, which was influenced by differences in the sources of end-of-life care knowledge.

Evaluation of Ovarian Cancer Care at the End of Life in a Single Tertiary Hospital

Aim: Fundamentally, aggressive care is considered to be avoided for the patients at the end of life. However, this is not always adhered in real-world practice. We attempted to determine whether, and if so how, the aggressive care is made for patients with ovarian cancer during the last month prior death. Methods: Enrolled were a total of 104 patients with ovarian cancer (including fallopian tube or primary peritoneal cancer), who were treated in Kuopio University Hospital in Finland during 2009-2014. The aggressive care was defined according to the standards outlined by the National Quality Forum;shortly, chemotherapy, emergency-room/intensive-care visit/admission, hospital admission, and death in hospital. Results: Two thirds of patients (67%) had received at least one form of aggressive care during the last month of their lives. Especially, admission in hospital in the last 30 days of life was the most common form of aggressive cancer care. Younger patients (<72 years) received significantly more often aggressive care than the older patients (80% vs 43%, p = 0.004). Those women that underwent end-of-life discussions earlier than one month prior to death had significantly less aggressive care than those women that had discussions during the last month (48% vs. 90%, p = 0.001). Conclusions: Ovarian cancer patients received commonly at least one form of aggressive care at the end of their lives. More efforts should be taken to improve the quality of palliative and end-of-life care.

Individualized Aromatherapy in End-of-Life Cancer Patients Care:A Case Report

As one of the methods of palliative care,aromatherapy has been applied gradually in clinical nursing work in China in recent years.Through aromatherapy,terminal cancer patients can get not only relieves of physical symptoms,but also spiritual relaxation and peace,thus have improved quality of life at the end stage.In this paper,we report in detail about how aromatherapy was applied for symptom control in a cancer patient with unknown primary malignancy and multiple metastasis and its effects on the terminal life of this patient.

Nurses’ Experiences of Using the Liverpool Care Pathway Plan in Hospitalized Patients with Heart Failure in the End-of-Life Stage: A Qualitative Content Analysis

Background: The introduction of care pathway plans for end-of-life cares such as the Liverpool Care Pathway (LCP) reveals a unique possibility for inter professional collaboration. Knowledge of symptom relief and how to meet the patients’ needs at the last stage of the palliative phase are essential for the nurses’ approach and care actions, but the documentation of such implementations is still rare and sometimes criticized. Aim: To explore and describe nurses’ experiences of using the LCP plan with patients hospitalized with heart failure at the end-of-life stage. An explorative design was applied, using qualitative content analysis of 20 interviews with nurses practicing the LCP plan in two district hospitals in Norway. Results: The nurses found the LCP plan as quality assurance for treatment and care in patients with heart failure in the last hours and days of life. The use of the LCP plan implied: 1) individualized adjustment, 2) symptom relief and 3) a holistic approach. Conclusion: Nurses experienced that using the LCP plan as a comprehensive action plan contributed in the decision making process and improved inter professional communication. Using the LCP plan should be seen as a tool to practice individualized and holistic nursing to patients at the end-of-life and their families, as well as a purposeful relief of symptoms associated with heart failure.

End of Life Experience of Symptom Cluster and Their Management in Hong Kong Chinese Patients with Lung Cancer Who Receive Palliative Radiotherapy

Breathlessness, fatigue, and anxiety are distressing symptoms for patients with advanced lung cancer, however, they are not relieved by palliative RT and are often viewed as neglected areas of clinical practice. This paper aims to review def initions of, and explore patients' experiences of, breathlessness, fatigue, and anxiety. Further, it will outline existing approaches, both pharmacological and non-pharmacological, to treat them. Current treatments and perceptions of these symptoms will be discussed in the context of Hong Kong health care service. The review of literature also shows that breathlessness, fatigue and anxiety appears to have similar emotional origins. A contemporary approach of using a common pyschoeducational intervention to treat these symptoms together as a cluster in end of life care will be discussed.

Factors Relating to Nurses’ End-of-Life Care

This integrative review aimed to investigate factors relating to end-of-life care of nurses. The review was conducted according to PICo (Participant, area of Interest, and Context). Keywords identified were: “nurse” AND “end-of-life care” (“dyingcare” OR “‘deathcare”, OR “near end stage of life care” OR “palliative care” OR “hospice care” OR “comfortable care in near death” OR “quality of dying patients care”), AND “nurses”. The database searched through PubMed, ProQuest, Google Scholar, Web of Science and SCOPUS. The searching inclusion criteria were limited to English and Chinese language studies about nurses’ end-of-life care from 2010 to 2019, yielding 258 English language articles and 2Chinese language articles. Results: A total of fifteen articles were selected based on inclusion criteria. Two subjects were obtained from the results that related to nurses’ care during the process of end of life: 1) Nurses’ demographic factors;and 2) Modifiable factors. Nurses’ demographic factors were age, years of work experience, level of education and experience of the death of a family member/friend. Modifiable factors included knowledge, attitude, confidence, relationship, environment and resources, communication, nursing activities, philosophy and culture of care, skills and training. These factors were explored in various areas and majority of the studies had been conducted in public government hospitals. Conclusion: The major power ability of care was observed in nurses who acted the significant part in caring for the terminally ill during the dying process. Caring for dying patients was related to many factors which could affect the fabric of nursing care at the end stage of life. The elements found in this review could lead to recommendations with implications for nursing practice so as to improve and enhance end-of-life care. Some factors could be considered like predictors affecting nursing practice for chronical ill patients in further research. In addition, nurses’ tranquility care in community hospitals should be more focused.

ePROMs in the End of Life and in Making Ethical Decisions. An Integrative Review with Narrative

Background: Patient-reported outcome measures (PROMS) are essential tools in clinical practice and research to assess patients’ needs from their unique perspectives. They allow the healthcare team to monitor patient status and concerns outside the clinical setting. However, the real innovation in this field is its digitization: electronic patient-reported outcome measures (ePROMs). Aims: This review aimed to get an overview of whether these new technologies are being used to aid palliative care teams in their daily struggle to provide comfort to their patients. Methods: We conducted a systematic review of articles retrieved from PubMed and Web of Science, up to November 2021. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. The search strategy yielded 242 records, of which 13 met the predefined inclusion and exclusion criteria. In addition, relevant information related to ePROMs was extracted from each study. Results: Outcomes were grouped into the quality of life assessment, symptom burden and simple assessments, and the decision to introduce Palliative Cures (PC). In 61.5% of cases, ePROMs positively impacted patients’ quality of life. Furthermore, in 46.15% of cases, ePROMs led Primary Care (PC) teams to make an ethical decision;the same relative value as in the circumstances did not define the direction in ethical terms. Conclusion: Remind professionals and patients that these tools exist and can be applied in many situations. If used correctly, they can provide patients with a better quality of life and more complete information for professionals.

End of Life Care Medical Education: 48 Hour Hospice Home Immersion Alters Students’ Lives

Introduction: Education and skill enhancement in palliative and end of life care is rarely part of the foundational medical education curriculum. The progress of student physicians tends to be measured by their ability to synthesize and demonstrate basic medical knowledge and clinical skills but offers little assessment of the maturation of attitudes or their values. The University of New England College of Osteopathic Medicine (UNECOM), immerses second year medical students in a hospice home for 48 hours to enhance students’ perspectives in interprofessional palliative and end of life care. Methods: This project utilized qualitative ethnographic and autobiographic research designs. Two female second year medical students (27 y/o & 26 y/o) were immersed for 48 hours into a local hospice home, sleeping in a bed where others had died, to answer the question: “What is it like for ME to live in the Hospice Home for 48 hours and how does this contribute to my future as a practitioner?” Data were collected in the form of journal notes for pre-fieldwork, fieldwork, and post-fieldwork and included subjective and objective reporting of observations, experiences, and patient/family encounters. Analyses included journal review and thematic categorization and coding through content analysis. Results: Themes common to both students that factored in the research question and their prior stated interest areas of medical humanities and person-centered care at end of life were identified. Three themes were selected for this article: 1) Person-Centered Experiences, 2) Spectrum of Communication, and 3) Introspection: Attitudes and Values. The process of living in the hospice home for 48 hours revealed students’ attitudes about various disease processes, their personal experiences with death and dying, and their assumptions about how patients approach death. Conclusion: This Hospice Home Immersion project provided both an educational approach and learning environment that was effective in advancing medical students’ attitudes, skills, and knowledge as evidenced by their self-reported life altering learning about end of life and palliative care.

Palliative Care, Suffering, Death Trajectory: A View of End-of-Life Care (EOL) Related Issues in Sub-Saharan Africa (SSA)

Palliative care in the sub-Saharan Africa (SSA) region despite some progress made since the first hospice was opened in Zimbabwe in 1979, still lags far behind that of countries with developed economies, and relatively suffers from not being wholly included into mainstream public health service delivery in SSA. The situation is made worse due to relatively poor and pervasive socio-politico-economic factors and the challenge of the changing and increasing non-communicable disease epidemiology in SSA countries. This situation results in a tension between scarce resources and service needs/provision which prevails in a good number of SSA countries. In large part the situation where palliative care, end of life and the death trajectory converge in SSA countries currently portrays one of scarcity of resources and suffering for those ill SSA patients who need the services. This article is an overview of the current situation as pertains to palliative care services in the SSA region and some of the factors that contribute to or perpetuate the current state of palliative care delivery in SSA countries.

Learning from the Film “Mitorishi (Transition Doula)”—Application to Understanding the End-of-Life in a Gerontological Nursing Practice Course in Japan

Purpose: This study aims to detail what nursing students learned from watching the film “Mitorishi”, which was used among the teaching materials in a gerontological nursing practice course in nursing education in Japan, and demonstrate the applicability of using the film as an element relevant to the teaching of end-of-life care in Japan. Methods: The participants were fourth-year nursing students at University A who had watched the film “Mitorishi” during the course, had submitted a report on what they learned, and provided informed consent to the study participation. The reports submitted by the participants were used as data and analyzed qualitatively using the content analysis approach. Results: The analysis identified the following five categories (number of codes): Characteristics of life during the final days (9), Importance of views on life and death (3), Importance of end-of-life care (3), Assistance in preparation for the final days of life (13), and Understanding the profession of transition doula (9). Discussion: The five categories show that the students have learned about the “role of nurses at the time of end-of-life care” while “visualizing end-of-life care” and learning “preparedness for end-of-life care”. These findings suggest that using the film “Mitorishi” in the teaching curriculum is effective for learning about end-of-life care for older people.

Assessment of a Multimodal Strategy for Information and Collection of Advance Directives in a Comprehensive Cancer Center:Description of the Study Protocol

Background:Information on the possibility of drawing up Advance Directives(AD)is a necessity,and represents a major medical,ethical,and legal challenge.The difficulties are numerous,both organizational and cultural,and this is also true in the context of oncology,where ADs(and more broadly,advanced palliative care)are of critical importance.As an eminently sensitive subject,dealing with ADs(and therefore with end-of-life issues)requires both societal and medical/health-care acculturation.An institutional approach has therefore been developed,to deploy information tools,training professionals,and formalize the collection of AD.Such an approach cannot be implemented without an assessment not only of its objective results but also above all of its psychological effects,on both users(patients,family caregivers)and professionals.Methods:This longitudinal study,based on a mixed-method,interdisciplinary approach,will assess the impact of this information dissemination on AD,in terms of both potential positive and negative effects,using validated measurement methods.Thus,this study follows the 5 criteria of the RE-AIM model,designed to analyze the interest and impact of a device intended for users of the healthcare system;we will use a mixed methodology,relying on both a quantitative component(counting the number of people benefiting from the scheme,and those requesting support in drawing up their DA...,administering questionnaires),as well as a qualitative component(focus groups)which will enable us to study the subjective experiences of users,their relatives and the professionals involved in the scheme.Results:The results of this study will make it possible to determine the effects of this system of assistance in the drafting of ADs,which is currently being promoted by the legislator,but which is struggling to be implemented.

Palliative care for end-stage liver disease and acute on chronic liver failure:A systematic review

BACKGROUND End stage liver disease(ESLD)represents a growing health concern characterized by elevated morbidity and mortality,particularly among individual ineligible for liver transplantation.The demand for palliative care(PC)is pronounced in patients grappling with ESLD and acute on chronic liver failure(ACLF).Unfortunately,the historical underutilization of PC in ESLD patients,despite their substantial needs and those of their family caregivers,underscores the imperative of seamlessly integrating PC principles into routine healthcare practices across the entire disease spectrum.AIM To comprehensively investigate the evidence surrounding the benefits of incorporating PC into the comprehensive care plan for individuals confronting ESLD and/or ACLF.METHODS A systematic search in the Medline(PubMed)database was performed using a predetermined search command,encompassing studies published in English without any restrictions on the publication date.Subsequently,the retrieved studies were manually examined.Simple descriptive analyses were employed to summarize the results.RESULTS The search strategies yielded 721 references.Following the final analysis,32 fulllength references met the inclusion criteria and were consequently incorporated into the study.Meticulous data extraction from these 32 studies was undertaken,leading to the execution of a comprehensive narrative systematic review.The review found that PC provides significant benefits,reducing symptom burden,depressive symptoms,readmission rates,and hospital stays.Yet,barriers like the appeal of transplants and misconceptions about PC hinder optimal utilization.Integrating PC early,upon the diagnosis of ESLD and ACLF,regardless of transplant eligibility and availability,improves the quality of life for these patients.CONCLUSION Despite the substantial suffering and poor prognosis associated with ESLD and ACLF,where liver transplantation stands as the only curative treatment,albeit largely inaccessible,PC services have been overtly provided too late in the course of the illness.A comprehensive understanding of PC's pivotal role in treating ESLD and ACLF is crucial for overcoming these barriers,involving healthcare providers,patients,and caregivers.

Between Euthanasia and Dysthanasia: The Ethical Issue of Sedation in the Terminal Phase of Illness

Background: Deep sedation, euthanasia and therapeutic relentlessness lead us today to rethink the paradigm of life and the contingency of human existence. Between therapeutic relentlessness, the unreasonable care which uses heavy therapeutic means which are often disproportionate to the expected benefit, namely keeping alive a patient whose condition is considered medically hopeless;and euthanasia which would precipitate the process of death would be sedation in the terminal phase of the illness. Should doctors and families of comatose patients decide the “life” and “death” of their patients? For anti-euthanasia associations, doctors, relatives of terminally ill patients and the State itself, if they accept the principle of euthanasia, they are “murderers”, while for pro-euthanasists, the dignity of the human being would recommend that the days of patients in situations considered critical be shortened, to avoid unnecessary suffering and humiliation. Methods: A systematic review of the literature was carried out to identify relevant articles relating to euthanasia, dysthanasia and sedation in the terminal phase of illness. The search was conducted in French or English in three databases: PubMed, Google Scholar and Science Direct. Objectives: The objectives of this article are: 1) define the terminologies and concepts of palliative sedation, deep sedation, deep and continuous sedation until death, euthanasia and dysthanasia;2) present aspects of the meaning of life and the human person in African cultures;and 3) propose an ethical reflection on the value of life. Results: After precisely defining the concepts of euthanasia, dysthanasia and sedation, this research presented the African anthropological and ethical approach to the mysteries of life and death. Conclusion: With this in mind, the golden rule of medicine always remains as such “Primum non nocere”.

Underutilization of palliative care services in the liver transplant population

AIM To evaluate use of palliative care services in patients with end-stage liver disease who do not have access to liver transplant.METHODS Evaluated were end-stage liver disease patients who were removed from the liver transplant wait-list or died prior to transplant at a single transplant center over a 2-year period. Those who were removed due to noncompliance or ultimately transplanted elsewhere were excluded from this study. Patient characteristics associated with palliative care consultation were assessed using logistic regression analysis.RESULTS Six hundred and eighty-three patients were listed for liver transplant in 2013-2014 with 107(16%) dying(n = 62) or removed for clinical decompensation prior to liver transplant(n = 45): Median age was 58 years, and the majority were male(66%), Caucasian(53%), had Child C cirrhosis(61%) or hepatocellular carcinoma(52%). The palliative care team was consulted in only 18 of the 107 patients(17%) who died or were removed, 89% of which occurred as inpatients. Half of these consultations occurred within 72 h of death. In univariable analysis, patients of younger age, white race, and higher end-stage liver disease scores at time of listing and delisting were more likely to receive palliative care services. Only younger age [Odds ratio(OR) = 0.92; P = 0.02] and Caucasian race(OR = 4.90; P = 0.02) were still associated with integration of palliative care services through multivariable analysis.CONCLUSION Palliative care services are grossly underutilized in older, non-white patients with cirrhosis on the liver transplant wait-list. We encourage early integration of these services into clinical decision-making in the transplant population, with further studies aimed at understanding barriers to consultation.

Current Attitudes of Anesthesiologists towards Medically Futile Care

Purpose: To explore anesthesiologists’ perceptions of the reasons underlying why physicians continue to provide care that they consider futile. Methods: A qualitative study was conducted utilizing a grounded theory approach. Four separate focus groups (2 resident physician groups and 2 attending physician groups) were conducted over a three week span. An interview guide was used consisting of a proposed definition of futility and five open-ended questions. Responses to the five open-ended questions were used to guide follow up questions. Transcribed audio recordings were then analyzed. Results: With data reduction, we were able to separate responses into definitions of futility, stories of cases where futile care was provided, and opinions as to the underlying causes of continuing to provide futile care. A variety of opinions was obtained, suggesting the possibility that different groups (surgeons, anesthesiologists, family members) view questions of futility differently. Conclusions: Complete agreement on a definition of futility does not exist. Even when some agreement exists, there is great difficulty in predicting outcomes in individual cases. Future quantitative studies may provide more evidence of trends in underlying reasons for providing futile care. Focused education efforts may then lead to more agreement between all involved.

Cost effectiveness of intensive care in a low resource setting: A prospective cohort of medical critically ill patients

AIM: To calculate cost effectiveness of the treatment of critically ill patients in a medical intensive care unit(ICU) of a middle income country with limited access to ICU resources. METHODS: A prospective cohort study and economic evaluation of consecutive patients treated in a recently established medical ICU in Sarajevo, Bosnia and Herzegovina. A cost utility analysis of the intensive care of critically ill patients compared to the hospital ward treatment from the perspective of the health care system was subsequently performed. Incremental cost effectiveness was calculated using estimates of ICU vs non-ICU treatment effectiveness based on a formal systematic review of published studies. Decision analytic modeling was used to compare treatment alternatives. Sensitivity analyses of the key model parameters were performed.RESULTS: Out of 148 patients, seventy patients(47.2%) survived to one year after critical illness with a median quality of life index 0.64 [interquartile range(IQR)0.49-0.76]. Median number of life years gained per patient was 30(IQR 16-40) or 18 quality adjusted life years(QALYs)(IQR 7-28). The cost of treatment of critically ill patients varied between 1820 dollar and20109 dollar per hospital survivor and between 100 dollar and 2514 dollar per QALY saved. Mean factors that influenced costs were: Age, diagnostic category,ICU and hospital length of stay and number and type of diagnostic and therapeutic interventions. The incremental cost effectiveness ratio for ICU treatment was estimated at 3254 dollar per QALY corresponding to35% of per capita GDP or a Very Cost Effective category according to World Health Organization criteria.CONCLUSION: The ICU treatment of critically ill medica patients in a resource poor country is cost effective and compares favorably with other medical interventions.Public health authorities in low and middle income countries should encourage development of critical care services.

Patients’ Involvement in Decision Making at End of Life—A Systematic Review of Literature

Background: involving patient in end of life decision is important to understand their wishes and preferences to help health care providers in improving the quality of dying and minimizing suffering. Aim: the aim of this review was to provide a detailed examination of the available literature related to patients’ involvement in decision making at end of life. Design: a systematic review following the PRISMA protocol was used, the review protocol was registered on PROSPERO: CRD42019128556. Data sources: we conducted a literature search in two electronic databases “CINAHL and Medline” during March-April 2019. The retrieved articles were included if they were: research reports or literature review;examined patient involvement in end-of-life discussions;full text publications, written in English and published from 2000-2019. Results: a total of (22) articles were included in the review;there was diversity in the purposes and design approach of the retrieved studies. The available literature explored patient’s involvement at end-of-life decision making through;describing current practices;understanding perspectives of end of life discussions;investigating the impact and identifying the barriers and facilitators of patients’ involvement in end of life discussions. Conclusion: involvement in end-of-life discussions improved the recognition of patients’ wishes, improved death experience, and decreased posttraumatic stress, depression, and anxiety among family members. Despite the documented benefits, some barriers against patient’s involvement in end-of-life decisions were recognized;lack of awareness;lack of education, training and experience;concerns about ethical and legal issues;and personal preferences of doctors or nurses were among the most commonly identified barriers.

Rationale for integration of palliative care in the medical intensive care:A narrative literature review

Despite the remarkable technological advancement in the arena of critical care expertise,the mortality of critically ill patients remains high.When the organ functions de-teriorate,goals of care are not fulfilled and life-sustaining treatment becomes a burden on the patient and caregivers,then it is the responsibility of the physician to provide a dignified end to life,control the symptoms of the patient and provide psychological support to the family members.Palliative care is the best way forward for these patients.It is a multidimensional specialty which emphasizes patient and family-based care and aims to improve the quality of life of patients and their caregivers.Although intensive care and palliative care may seem to be at two opposite ends of the spectrum,it is necessary to amalgamate the postulates of palliative care in intensive care units to provide holistic care and best benefit patients admitted to intensive care units.This review aims to highlight the need for an alliance of palliative care with intensive care in the present era,the barriers to it,and models proposed for their integration and various ethical issues.

The Impact of Health Care Reform Initiatives on Ethical Conflict and Opportunities for Nurses to Improve Quality of Care While Enhancing Their Work Environments

Background: After more than a decade of the nursing profession contending that healthcare reform based almost exclusively on cost cutting was creating an array of serious ethical issues for nurses, healthcare organizations and other providers are now facing increasing demands primarily from payers to demonstrate improvement in both quality of care and patient experience along with continued cost reduction. Research Question: Have efforts by healthcare organizations to comply with these recently imposed requirements influenced the ethical environment faced by nurses and nurse leaders and if so, how? Materials and Methods: Data for assessing the current ethical environment was gathered with a close-ended survey mailed in October 2012 to a random sample of 3000 members of the American Organization of Nurse Executives. Results and Discussion: Statistical analysis of the data and comparison with the findings of a similar study conducted in 2000 indicated that along with five highly rated issues in the earlier study attributed largely to economic constraints imposed by healthcare organizations, the top-10 key ethical issues today included five issues primarily attributable to interprofessional conflict. Conclusion: Given the success of many ongoing efforts aimed at weakening these key sources of ethical conflict that have blocked many proposals to improve the quality of care, opportunities should arise for the nursing profession to more fully achieve its goals of improving the quality of care, safety and patient satisfaction and enhancing nurses’ work environments essential to that effort.

The Effect of Educational Intervention regarding Advance Care Planning for Advance Directives

This study aimed to examine the effects of empowerment and education intervention to promote Advance Care Planning (ACP) for residents in a highly aged and depopulated region. The study utilized a single-group pre- and post-test design and was conducted in Osakikamijima, Hiroshima, Japan. The researchers and town officials together formed an ACP committee and created an intervention framework. An ACP workshop was held for the participants and a self-administered questionnaire was carried out before, immediately after, and 3 months after the workshop. A total of 125 residents participated in the workshop and 87 of them completed more than 80% of the questionnaire items, whose responses were analyzed as valid responses. The number of participants who completed the AD increased significantly three months after the workshop (p = 0.008). There was a slight increase in the frequency of consultation with the family, but no change was observed in terms of consultation with healthcare providers. The educational intervention in-creased the respondents’ awareness and knowledge of ACP but did not affect the autonomous decision-making process regarding end-of-life care. This strategic process of ACP empowered the residents’ awareness and attitude towards end-of-life care with an increased completion rate of AD. On the other hand, cognitive barriers remained toward communication and decision-making shared with healthcare providers. Insufficient consultation with family members also became evident. Therefore, a new intervention strategy which helps increase communication with healthcare providers needs to be formulated and guidelines for consultation with the family and others need to be prepared.