Palliative Care Family Research Articles

Understanding and Accessing Palliative Care Services for Patients with Progressive Illness

As our country’s population ages, there are more patients with advanced chronic illness and increasingly complex care needs. Our rapidly changing healthcare environment now recognizes the importance of improving care quality to achieve better health outcomes while lowering cost and improving patient satisfaction. This focus solidified the emergence of Palliative Care as an essential specialty to provide the comprehensive care that these patients with advanced chronic illness require. Palliative Care assists patients and families with difficult decision-making, addresses pain and other distressing symptoms, helps prolong life, controls costs, and most importantly, improves patient and family satisfaction. To maximize the benefits of palliative care, practicing Family Physicians need to develop primary palliative care knowledge and skills while recognizing when specialty level palliative care is required. Prognostication is an essential skill as it allows patients and families to establish realistic goals of care that will guide medical decision making throughout the disease trajectory. In all settings, primary and specialty level palliative care is best delivered by an interdisciplinary team with the Family Physician as an essential team member.

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design Pooled analysis of a retrospective cohort study.Setting Ontario, Canada.Participants...

Factors associated with feelings of reward during ongoing family palliative caregiving.

Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers. Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards. The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving. It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

Sadness, Anxiety, and Experiences with Emotional Support among Veteran and Nonveteran Patients and their Families at the End of Life

Although many veterans are progressing into older adulthood and a substantive subset of people who die each year in the United States served in the military, there is limited evidence on the role of military service at the end of life. The objective of the study was to examine differences in caregivers' perceptions of sadness and anxiety at the end of life between veteran and nonveteran patients and levels of contentment with the emotional support provided to the patient and family by hospice staff. This cross-sectional study used clinical information from the Family Evaluation of Hospice Care (FEHC) survey administered to caregivers of a patient who received hospice services. The sample in this study included 560 individuals who completed the FEHC survey (from December 2007 to April 2013) after receiving services at a large hospice in an urban southwestern U.S. city. Caregivers responded to questions on the FEHC survey about demographic information, perceptions of the patient's level of sadness/anxiety, and the emotional support the patient and family received from hospice staff. In addition, information regarding veteran status was obtained from patients' medical records. Caregivers of veterans were significantly more likely to report that the patient experienced sadness/anxiety at the end of life, as well as a desire for more emotional support for the family from hospice staff after the death. Results provide preliminary evidence for veteran status being a risk factor for emotional distress at the end of life, highlighting the possible need for augmented support services for veterans and their families in hospice and palliative care.

The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

Caring for the Lived Experience: An Exercise in Teaching Whole Person Care

Common medical professions’ education for whole person care of seriously ill people and their family is often lacking. The balance of educational attention to the biology of disease often far outweighs similar attention to the lived experience of the illness and personal caring. In an attempt to test and teach the lived experience a written essay survey instrument has been created and administered to new palliative care staff and family medicine residents.A summary of the participant’s responses to questions concerning ethical principles, dignity, health care desires, compassion, existential suffering, hope, grief, mindfulness, attunement, and end of life care will be shared in narrative fashion accompanied with teaching points used with participants. Third year family medicine residents’ reflections will be shared to reflect the impact of the teaching of whole person care.

Nurses’ perception on palliative care and management of pain at the ICU

Taking care of a human being in the death process is a challenge for nurses working at the Intensive Care Unit (ICU). Thisstudy aimed to identify and analyze the nurses’ perception on palliative care and management of pain in an Intensive CareUnit and characterize the sample. This quanti-qualitative study was developed at an Intensive Care Unit of Campinas, inthe state of Sao Paulo. Eight nurses participated in the study. Data were collected from June to August 2011 through semi--structured interviews recorded individually. Quantitative data were analyzed through descriptive statistics and qualitativedata were analyzed according to the content analysis methodology. The nurses working in the ICU form a heterogeneousteam having different time experience as a nurse, different working time in the ICU and in the institution. By analyzingthe speeches, five categories were evidenced: palliative care concept, nursing care in palliative care at the ICU, measuresto evaluate and control pain, lack of consensus for palliative care and pain control and family integration at the ICU. Thedifficulty of the nurses in relation to palliative care and pain management highlights the importance of approaching thetheme since undergraduate level and of the education activities aimed at a permanent education of the professionals aboutthe theme.

Early integration of palliative care services with standard oncology care for patients with advanced cancer

Scientific advances in novel cancer therapeutics have led to remarkable changes in oncology practice and longer lives for patients diagnosed with incurable malignancies. However, the myriad options for treatment have established a culture of cancer care that has not been matched with a similar availability of efficacious supportive care interventions aimed at relieving debilitating symptoms due to progressive disease and treatment side effects. Accumulating data show that the introduction of palliative care services at the time of diagnosis of advanced cancer leads to meaningful improvement in the experiences of patients and family caregivers by emphasizing symptom management, quality of life, and treatment planning. In this review article, the rationale and evidence base for this model of early palliative care services integrated into standard oncology care are presented. In addition, the implications and limitations of the existing data to 1) elucidate the mechanisms by which early palliative care benefits patients and families; 2) guide the dissemination and application of this model in outpatient settings; and 3) inform health care policy regarding the delivery of high-quality, cost-effective, and comprehensive cancer care are discussed.

Palliative care in Japan

Providing palliative care in Japan is one of the most important health issues. Understanding palliative care delivery systems of other countries is useful when developing and modifying palliative care systems worldwide. This review summarizes the current status of palliative care in Japan, focusing on the structure and process development. Palliative care units and hospital palliative care consultation teams are the two main specialized palliative care services in Japan. The number of palliative care units is 215 (involved in 8.4% of all cancer deaths), and there are approximately 500 hospital palliative care teams. Conversely, specialized home care services are one of the most undeveloped areas in Japan. However, the government has been trying to develop more efficient home care services through modifying laws, healthcare systems, and multiple educational and cooperative projects. The numbers of palliative care specialists are increasing across all disciplines: cancer pain nurses (1365), palliative care nurses (1100), palliative care physicians (646), and palliative care pharmacists (238). Postgraduate education for physicians is performed via the special nationwide efforts of the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) project - a 2-day program adopting a trainer-trainee strategy. Over 30,000 physicians have participated in the PEACE program. A total of 1298 and 544 physicians have completed a trainer course for palliative medicine and psycho-oncology, respectively. Multiple structure and process evaluation, bereaved family surveys in palliative care units, and patient and family evaluation in the regional palliative care program indicate many improvements. Palliative care in Japan has progressed rapidly, and the Cancer Control Act has played a very important role in developing palliative medicine. Challenges include developing a structure for palliative care in the community or regional palliative care programs, establishing a method to measure and improve the quality of palliative care at a national level, developing evidence-based medicine and policy making, and palliative care for the noncancerous population.

Effectiveness of using clinical guidelines for conducting palliative care family meetings in Japan

The purpose of this study is to pilot test the effectiveness of using recently developed clinical guidelines from Australia for conducting palliative care family meetings in Japan. Palliative care family meetings were conducted using clinical guidelines with 15 primary family carers of cancer patients who were admitted to an acute care hospital in Japan. Using the pre-family meeting questionnaire, the primary carers were asked to write key concerns to discuss during the family meetings and rate their concerns via a numerical rating scale: how upset/worried they were about the problem, frequency in which problem occurs, life interference with the problem, and the confidence to deal with the problem. Within 3 days after the meeting, the primary carers were asked to complete the post-meeting questionnaire to evaluate the effectiveness of the family meeting. There was a significant improvement in family carers' psychological well-being in the post-meeting questionnaires compared to the pre-meeting questionnaires as follows: how upset/worried they were about the problem, t(14) = 3.1071, p < 0.000011; frequency in which problem occurs, t(14) = 3.2857, p < 0.000013; life interference with the problem, t(14) = 2.7857, p < 0.000008; and the confidence to deal with the problem, t(13) = -2.3007, p < 0.005480. In accordance with the study aims, we were able to demonstrate the utility of a questionnaire as an essential tool to plan and conduct effective communication between health professionals and primary family carers in Japanese cancer patients. This pilot test should be followed up with a larger sample and a controlled trial.

Communication barriers experienced by paediatric palliative care staff when interacting with children, young people and families: a literature review

BackgroundA recent Department of Health funded evaluation of West Midlands Children and Young People's Palliative Care services disclosed that staff reported concerns about their ability to effectively communicate with children...

Dyspnea management in palliative home care: A case series in Malaysia

Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non–cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.

Challenges in providing family-centered support to families in palliative care

Background: Supporting the family-as-a-whole presents challenges in palliative care, although family meetings are increasingly used in routine practice. The Family Focused Grief Therapy (FFGT) Model guides clinicians in using a range of intervention strategies. Aim: To examine the therapists’ techniques used in assessing ‘at risk’ families in palliative care to better illuminate what helps and what remains challenging. Method: Recorded sessions 1 and 2 were coded using the FFGT fidelity coding measure, with its glossary of definitions. Inter-rater reliability between three coders was satisfactory at 88%. Frequencies of strategy utilization were computed, with extraction of examples of both successful and problematic approaches. Setting/participants: From within a larger study of family therapy during palliative care at a comprehensive cancer center, the first two sessions (n = 144) delivered to 74 families (299 individuals) by 32 therapists were coded and analyzed. Results: Therapists readily explored the story of illness and families’ ways of coping (97%) and assessed communication and cohesiveness in the majority. Exploration of relational patterns occurred in 89% of sessions, use of a genogram in 80%, understanding members’ roles in 65% and family values and beliefs in 62%. Less use was made of summaries (39%), family mottos (34%), exploration of family conflict (35%) and the formalization of a comprehensive family treatment plan (20%). Conclusions: Challenges exist in therapy with difficult families. Therapy in the home brings special issues. Therapists can apply most of the interventions prescribed by the FFGT model.

62 Barriers to Optimal Palliative Care of Lung Transplant Candidates

<h3>Purpose</h3> Provision of palliative and end-of-life care is of special importance for patients awaiting lung transplantation. However, lung transplant program practices may be at odds with palliative care principles. We examined perceived barriers to delivery of palliative care to lung transplant candidates and sought strategies to improve such care. <h3>Methods and Materials</h3> An anonymized e-mail questionnaire was sent to all members of the American College of Chest Physicians Transplant NetWork and of the Pulmonary Council of the ISHLT. It included demographic and practice-related questions, questions about barriers to palliative care of lung transplant candidates, availability of services and utility of strategies to improve palliative care. Transplant program practitioners were eligible for this study. <h3>Results</h3> There were 158 eligible responses. Respondents were in practice 11.3 (±9) years. 70% were pulmonologists, 17% surgeons and 13% other care providers, including coordinators and nurse practitioners. Barriers that were considered at least moderate by >50% of respondents were classified as significant. These included unrealistic patient/family expectations about survival until and after transplant, patient/family unwillingness to plan end-of-life care, patient concerns about inappropriate care or abandonment after enrollment in a palliative care program and family disagreements about care goals. Among program policy barriers, the requirement for weight loss or gain was identified. Clinician barriers included competing time demands and seemingly contradictory goals of transplantation and palliative care. Helpful strategies included routine advanced care planning assistance for listed patients, access to palliative care consultants, training of transplant physicians in symptom management and regular meetings between transplant physicians, nurses, patients and families. <h3>Conclusions</h3> Clinicians providing care to lung transplant candidates perceive important barriers to the delivery and acceptance of palliative care and believe that there are specific strategies that may improve such care.

Research Priorities Associated with Family Caregivers in Palliative Care: International Perspectives

Reviews of the literature have consistently highlighted significant gaps with regard to research associated with family caregivers within the context of palliative care. We sought to determine a priority driven research agenda for this field of inquiry. A Web-based survey was sent to 80 people who had previously expressed interest in, or were members of The International Palliative Care Family Carer Research Collaboration (http://centreforpallcare.org/index.php/research/ipcfcrc/). Fifty-five participants completed the survey (response rate, 70%) from 12 countries. Priority research areas included: intervention development and testing; underresearched caregiver groups; access to services; unmet needs; bereavement; experience and implications of the caregiver role; and development of assessment tools. Qualitative responses complemented these data and also acknowledged the importance of collaboration and development of a critical mass of researchers focusing in this area in order to progress knowledge. These results reinforce the findings of systematic reviews that have demonstrated a need for the evolution of intervention development focused on improving family caregiver support. However, there are other key areas that also warrant comprehensive attention, including marginalized family caregivers and strategies to assist health professionals to identify family caregivers who have significant psychosocial issues.

Away from Home: Experiences of Mexican American Families in Pediatric Palliative Care

In this study, the authors describe the experiences of Mexican American family members who immigrated to the United States and then experienced the death of a child. Participants described difficulties they encountered crossing the border, leaving the culture of their homeland, and then caring for a seriously ill child. Key themes that characterized their experience of being far from home included a backdrop of poverty, absence of traditional social support, and challenges caring for healthy siblings. Participants made comparisons between health care in Mexico and the United States and assessed the trade-off they made to come to the United States, discussing access to medical care and how they were able to relate to health care providers. Further, participants conveyed how rituals from their home country were important in maintaining connections with the child who died. Based on these themes, clinical implications and strategies that focus on understanding participants' experiences with past traumas, communication and literacy needs, and the challenges of living in poverty—especially with a critically ill child—are needed.

Interpreting the information behaviour of patients and families in palliative cancer care: a practical approach1

An exploratory study on information needs and information behaviour wasconducted with patients and families in a palliative cancer care setting in 2007 in South Africa. It showed differences between information needs reported by patients and families, and healthcare professionals’ perceptions thereof. This article considers how healthcare settings with the support of libraries can make a difference in supporting the information behaviour of patients and families. It discusses support with unrecognised information needs, information needs occurring at different disease stages, information on emotional and psychosocial issues, information needs that are difficult to discuss, and the need for individualisation and contextualising.

Letters from Relatives: A Source of Information Providing Rich Insight into the experience of the Family in Palliative Care

Studies on the effectiveness and efficiency of palliative care (PC) services that use a methodology similar to that used by studies in other medical specialties face serious limitations, since the goals of PC are substantially different. Qualitative research methods can make an important contribution to our understanding of the features of palliative care (PC) that are most relevant to patients and their relatives. The goal of this study was to understand the reasons behind the gratitude shown in letters from bereaved relatives sent to two PC units, one in Spain and one in Portugal. A thematic analysis of the content of the letters was independently carried out by three researchers, who later collaborated to write up the results. Relatives appeared grateful primarily for the humane attitude, professional treatment, and emotional support that their loved ones received from the PC team; they thanked the team for creating a special atmosphere and offering holistic care, and they talked about the contrast between PC and other forms of care. The unsolicited gratitude expressed in their letters constitutes a valid and particularly rich source of information about the contribution that a PC team can make.

A systematic review of psychosocial interventions for family carers of palliative care patients

BackgroundBeing a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org.MethodsA systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.ResultsA total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.ConclusionsThe systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.

Interprofessional collaboration in palliative nursing: what is the patient-family role?

Interprofessional collaboration occurs when health professionals from different disciplines work together to identify needs, solve problems, make joint decisions on how best to proceed, and evaluate outcomes collectively. Interprofessional collaboration supports patient-centred care and takes place through teamwork. Team interactions, wider organizational issues, and environmental structures, such as safety, quality, efficiency and effectiveness issues influence this model of care. These broader contextual influences affect practice where there are tensions between the ideals of interprofessional collaboration and the realities of practice. This is evident when the patient and family position in interprofessional collaboration is considered. This article will discuss factors that affect interprofessional collaboration in relation to patients and families in palliative care. First, a definition of interprofessional collaboration is given, followed by an outline of the need for interprofessional collaboration. A brief discussion of key issues that influence collaboration follows, and a review of the implications for practice is presented.