Aspects Of Palliative Care Research Articles

Assessing the Benefit of Palliative Care in Germany - Perspective of Patients, Relatives and Professionals

The evaluation of complex interventions such as palliative care is challenging. Methods guidance such as the guidance documents of the Integrated Health Technology Assessment for the Evaluation of Complex Technologies (INTEGRATE-HTA) project help address specific challenges. The INTEGRATE-guidance was developed cooperatively by various international stakeholders and it was applied in a case study on palliative care. The presented study was part of the INTEGRATE-HTA project. ObjectivesThe objective was to identify important assessment aspects of palliative care in Germany from the perspective of patients, relatives and professional providers. Applying the structured consensus method of the Improved Nominal Group Technique, we conducted interviews with two focus groups - one with relatives and one with professionals. Additionally, we conducted 4 interviews with patients. We used an open coding procedure to analyze the data and a dialogical approach to validate the results. 8 assessment aspects were found to be important. These are the definition and legitimacy of the term benefit, understanding of palliative care, patient-centered and holistic care approach, access to palliative care, continuity and flexibility of care, education of palliative care providers, and multidisciplinary approach. A central point was the need to address the intervention in its complexity and to include interactions between the different components. To be able to integrate various models and different perspectives of palliative care, it is important to have the involvement of different stakeholders. This also enhances the incorporation of important aspects during the development of assessment instruments.

Screening with the double surprise question to predict deterioration and death: an explorative study

BackgroundEarly identification of palliative patients is challenging. The Surprise Question (SQ1; Would I be surprised if this patient were to die within 12 months?) is widely used to identify palliative patients. However, its predictive value is low. Therefore, we added a second question (SQ2) to SQ1: ‘Would I be surprised if this patient is still alive after 12 months?’ We studied the accuracy of this double surprise question (DSQ) in a general practice.MethodsWe performed a prospective cohort study with retrospective medical record review in a general practice in the eastern part of the Netherlands. Two general practitioners (GPs) answered both questions for all 292 patients aged ≥75 years (mean age 84 years).Primary outcome was 1-year death, secondary outcomes were aspects of palliative care.ResultsSQ1 was answered with ‘no‘ for 161/292 patients. Of these, SQ2 was answered with ‘yes’ in 22 patients. Within 12 months 26 patients died, of whom 24 had been identified with SQ1 (sensitivity: 92%, specificity: 49%). Ten of them were also identified with SQ2 (sensitivity: 42%, specificity: 91%). The latter group had more contacts with their GP and more palliative care aspects were discussed.ConclusionsThe DSQ appears a feasible and easy applicable screening tool in general practice. It is highly effective in predicting patients in high need for palliative care and using it helps to discriminate between patients with different life expectancies and palliative care needs. Further research is necessary to confirm the findings of this study.

Resident Education in End-of-Life Communication and Management: Assessing Comfort Level to Enhance Competence and Confidence

Our primary objective was to understand residents' baseline comfort with end-of-life (EOL) communication and management and to compare this with their comfort after completion of their surgical intensive care unit (SICU) rotation. We also evaluated the association between prior training with perceived level of comfort with EOL issues, and whether the resident believed in the concept of a "better death." As a quality improvement initiative, we conducted surveys of trainees before and after their rotation in the Yale New Haven Hospital SICU. Prerotation and postrotation surveys were administered to all residents who rotated during the 2016-2017 academic year and the first half of 2017-2018. The survey consisted of 34 questions querying residents on their level of training in EOL care, their comfort with management and discussions in different EOL domains, and their beliefs about what measures would have improved their ability to provide EOL care. Residents surveyed were from general surgery, emergency medicine, or anesthesia departments. Our study demonstrates that there is a significant correlation between resident comfort with EOL communication and experience providing EOL care. However, concepts in medicolegal aspects of palliative care could be taught through formal didactics, and structured training may allow residents the opportunity to reflect on the importance of a "better death."

Spiritual care at the end of life in the primary care setting: experiences from spiritual caregivers - a mixed methods study

BackgroundSpiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this.MethodSequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding.ResultsSpiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding.. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers’ services. Also, structural funding for spiritual caregivers in the primary care setting should be organized.ConclusionSpiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers’ services.

Palliative care in glioma management.

The concept of palliative care is becoming increasingly important in the management of glioma patients. However, the right time for implementation, as well as the individual degree of integration of palliative care aspects, are still a matter of debate. This review updates recent evidence of palliative care in glioma and raises questions for future developments. According to the disease-specific aspects of palliative care in glioma management, there is an increasing need for a specialized 'neurooncological' palliative care approach.The implementation of palliative care for glioma patients and caregivers avoids unnecessary hospitalization and reduces health-related costs. Moreover, palliative care may be offered in different settings (inpatient/outpatient) according to local health structures, but definitely improves the QOL of glioma patients and their caregivers. There are considerable differences between countries with respect to palliative care in glioma. Major aspects of good-quality care throughout the countries are optimized symptom control, support for patients and proxies by an interdisciplinary team and to provide realistic information to patients and caregivers. The availability of neurooncological palliative teams and multidisciplinary support programs increases well being of glioma patients and caregivers as well as releases pressure on healthcare systems.

Controlling Death. Highlights from Harvard Medical School Annual Bioethics Conference

En 2019, la Conferencia Anual de Bioética de la Facultad de Medicina de Harvard se cuestionó si estamos controlando la muerte eligiendo cuándo y cómo morimos. Este artículo compara las investigaciones publicadas con el tema de la conferencia. Los participantes en la conferencia discutieron sobre la comodidad y la dignidad en el final de la vida, los aspectos legales y éticos de los cuidados paliativos, pero otras opciones de salida deben ser discutidas, como los cuidados paliativos, la suspensión voluntaria de comer y beber, la muerte asistida por un médico y la eutanasia activa voluntaria, así como el documento de voluntades anticipadas o el equipo de cuidados paliativos. Concluimos discutiendo qué otras condiciones de salud (psiquiátricas, cardiovasculares o respiratorias) podrían beneficiarse de las opciones de salida.

Базові аспекти педіатричної паліативної допомоги

Базові аспекти педіатричної паліативної допомоги

Palliative care education in the undergraduate medical curricula: students\u2019 views on the importance of, their confidence in, and knowledge of palliative care

BackgroundThe need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students’ views on palliative care in terms of its importance, their confidence in and knowledge of the domain.MethodsFinal-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care.ResultsTwo hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly.ConclusionThe students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum.

Living, loving, dying: Insights into rural compassion.

To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas. In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the 3-year period prior. Nineteen participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age. To explore experiences of end-of-life care in a rural community. Participants discussed the challenges they experienced during end-of-life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving. The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end-of-life palliation, as a complex intersection of supererogation, innovation and place-driven care.

Pediatric palliative care in the medical neighborhood for children with medical complexity.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children. However, as the prevalence and long-term survival of CMC increases with medical advancements, the demand for pediatric palliative care will likely exceed the capacity of current and future pediatric palliative care specialists. Therefore, alternative strategies to ensure access to essential aspects of palliative care must be considered. This article focuses on why and how high-quality palliative care should be integrated into the patient- and family-centered medical home, the ideal care delivery model for CMC and their families. We first discuss how palliative care principles naturally align with and complement the goals of the CMC medical home. Next, we detail what actions pediatric palliative care specialists can take to best support the CMC medical home as "medical neighbors." Lastly, we describe the fundamental aspects of pediatric palliative care that all clinicians caring for CMC should be able to provide, referred to as "primary pediatric palliative care." (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Migrate your mind: the role of palliative care in transcultural cancer treatment : Aqualitative analysis.

SummaryBackgroundIn increasingly multi-ethnic societies fostering cultural awareness and integration of immigrants is not only a political duty but also an obligation for social and healthcare systems. Importantly, cultural beliefs and needs strongly impact on the quality of life of cancer patients and may become even more crucial at the end of life. However, to date, ethnic and cultural aspects of palliative care are insufficiently researched.MethodsThis qualitative study at the Medical University of Vienna included 21 staff members from different disciplines in oncology and palliative care working with patients with various cultural backgrounds at the end of life. Semi-structured interviews were performed to gain insights into specific aspects of palliative care that are important in the clinical encounter with terminally ill cancer patients with migrant backgrounds and their relatives.ResultsInterviews revealed specific aspects of palliative care, which fell into four fundamental categories and were all perceived as beneficial in the clinical encounter with migrant clients: (A) structural and (B) personal conditions of the palliative care setting, (C) specific care and treatment intentions and (D) personnel requirements and attitudes.ConclusionThis study revealed first insights into possibilities and prospects of transcultural palliative care for migrants and their relatives. The results might have important implications for the end of life care in this growing population.

PATIENTS’ AND NURSES’ PERCEPTIONS OF PALLIATIVE CARE OUTCOMES: A COMPARATIVE STUDY

Background. Patients with advanced cancer require treatment and the fulfillment of their needs, based on the results of assessments regarding their physical symptoms, psychological and spiritual needs. Palliative care should be delivered with a person-centered care approach. It is important to consider the patients’ reports of their carings’ outcomes. Comparisons between the patients’ and nurses’ perceptions of palliative care outcomes can be used to improve the quality of palliative care.Objective. The purpose of this study is to compare the patients’ and nurses’ perceptions of palliative care outcomes during the patients’ hospitalization.Methods. This is a comparative descriptive study with a cross-sectional design. Data were collected from May to June 2018 from a total of 106 patients with advanced cancer, and 61 nurses. The versions of the Palliative care Outcome Scale (POS) for patients and nurses were used to measure the palliative care outcomes of the patients’ and nurses’ perceptions.Result. The study found a significant difference between the perceptions of the patients and nurses for the palliative care outcomes, particularly in the information availability domain (p = 0.001), the other symptoms domain (p = 0.029), and the anxiety feelings domain (p = 0.030), while the other seven domains had no significant differences between both groups (p > 0.05).Conclusion. The anxiety feelings, other symptoms and information availability domains are the aspects of palliative care which need more attention from health care providers, especially nurses, when caring for patients with advanced cancer.

Perceived quality of palliative care in intensive care units among doctors and nurses in Taiwan.

To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs). A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process. Seven adult medical and surgical ICUs at a medical center in Northern Taiwan. In total, 172 doctors and nurses who worked in adult ICU for more than 3 months. Nurses' and doctors' perception of quality palliative care. Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (β = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors' decisions (χ2 = 12.07, P < 0.01). Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.

Legal Aspects of Palliative Care in Ukraine

The article addresses the problems of palliative care in Ukraine. It has provided a characteristic of existing regulations in this field. In the legislation of Ukraine it is defined that palliative care is provided at the latest stages of incurable diseases and it includes a set of measures aimed at alleviating the physical and emotional suffering of patients, as well as providing psychosocial and moral support to members of their families. One of the most actual problems is receiving narcotic pain medication. Narcotic analgesics are drugs of strict accountability. Painkillers in Ukraine are not registered in tablets, plasters. Therefore, palliative patients depend on injection drug administration. It’s a fact that in foreign countries Medicinal Cannabis is used for anesthesia and the treatment of certain diseases. This substance is banned in Ukraine. Public organizations are trying to initiate a law that would legalize this drug for the use in medicine. The next actual problem is psychological support of patients. It is noted that palliative patients and their families need psychological and spiritual support. A foreign experience has been analyzed in this field. The Agency for Healthcare Research and Quality in the USA has founded a special curriculum for doctors. The aim is to improve understanding of the basic principles of palliative care. It is possible to arrange upgrading courses, read necessary lectures or print literature and appropriate brochures for healthcare professionals. It suggests an improvement in the education of palliative workers on the basis of higher education. There is a problem with the lack of staff in the hospices of Ukraine. This profession is not popular and employees of hospices have a small salary. Still, this work is responsible and nervous. The article also presents an analysis of the trends and the development of laws in the field of palliative care in Ukraine.Manuscript received 28.02.2019

Circle of Trust: How Psychodynamic Themes Such as the 'Holding Environment' Optimize Coping with Serious Illness (FR458)

•Describe the essential aspects of holding presence, holding environment and containment as they relate to psychological integration and improved prognostic awareness.•Demonstrate practical techniques and communication strategies to cultivate a holding presence for patients and families.•Identify key insights from psychodynamic theory that provide a useful framework for optimal psychological coping. One of the most challenging aspects of hospice and palliative care is encountering a patient's fear of the dying process, including the common existential worries of dying alone and the losses of physical decline. How does a patient have the psychological strength to go from the security of their previous healthy life to the many phases of loss and uncertainty with life-limiting illness? Recent literature reveals that many patients mitigate these fears by proactively creating a tightknit circle of trusted people "on the inside.” This "inner circle” generally consists of reliable family, loved ones and clinicians who are emotionally available to the patient, but not overly invasive or intrusive. The "holding presence” of this inner circle allows patients to better tolerate the possibility of dying by facilitating an environment where patients can smoothly vacillate between comfort and fear as well as more and less realistic hopes. This swinging between such extremes is most successful when a patient has secure attachments to this inner circle of relationships that can witness this back and forth. Moreover, this containing presence allows patients to better communicate their values and goals amidst intense affective experiences. Thus, such a holding environment can facilitate improved prognostic awareness and advance care planning. In this interdisciplinary concurrent session, three experts in psychodynamic theory and palliative care will highlight how the "holding presence” of an inner circle creates a containing environment for patients to better cope with life-limiting illness. One expert is a psychoanalyst and will reveal how contributions from thinkers such as Winnicott, Bion, Bowlby and Buber illuminate these relational dynamics at the end of life. Presenters will draw upon clinical case material to demonstrate practical techniques utilizing these insights when caring for patients and families.

The Indian Society for Study of Pain, Cancer Pain Special Interest Group guidelines on palliative care aspects in cancer pain management

The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group guidelines on palliative care aspects in cancer pain in adults provide a structured, stepwise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs, patient population, and situations in India. A questionnaire based on the key elements of each subdraft addressing certain inconclusive areas where evidence was lacking was made available on the ISSP website and circulated by E-mail to all the ISSP and Indian Association of Palliative Care members. In a cancer care setting, approaches toward managing pain vary between ambulatory setting, home care setting, acute inpatient setting, and end-of-life care in hospice setting. We aim to expound the cancer pain management approaches in these settings. In an ambulatory palliative care setting, the WHO analgesic step ladder is used for cancer pain management. The patients with cancer pain require admission for acute inpatient palliative care unit for poorly controlled pain in ambulatory and home care settings, rapid opioid titration, titration of difficult drugs such as methadone, acute pain crisis, pain neuromodulation, and pain interventions. In a palliative home care setting, the cancer pain is usually assessed and managed by nurses and primary physicians with a limited input from the specialist physicians. In patients with cancer at the end of life, the pain should be assessed at least once a day. Moreover, physicians should be trained in assessing patients with pain who are unable to verbalize or have cognitive impairment.

Adapting to Dying and Bereavement of Geriatric Palliative Care

Palliative care has recognized the power of suffering of life threatening illness and is concerned with helping people to cope and adapt with these chronic illness. Our fear of death and the loss of a loved one are two of the most monumental emotional challenges of human existence and suffering. This is incorporated into a philosophy of care that has resulted in the principles of palliative care. This anxiety is usually suppressed and is only exposed when the reality of a possible death is confronted. Fear of death stems from different sources, for example, the thought of our non-existence and the fear of the unknown of what lies beyond death. By understanding how societies deal with death, it is possible to explore the more specific issues of how patients cope, the problems that can arise and how carers should respond. This includes care of both the patient and those important to them (significant others). Bereavement support of some kind has become a fundamental aspect of palliative care, although there is a view that it continues to be a marginalized service, with reports of inequitable distribution of services. This paper will review how to improve the understanding of the processes involved during dying and bereavement, the damaging consequences that can occur and the role of health professionals in caring for the dying and the bereaved.

Do We Need to Nurse Our Nurses to Ensure Quality Palliative Care?

The role of nurses in palliative care is extremely important due to their close interactions with patients and their families. However, many nurses render themselves inadequate both in terms of knowledge and competency in handling palliative care patients. Herein, we aimed to assess nurses' knowledge on the core principles of palliative care and determine various factors associated with a better knowledge base. Additionally, the ability of nurses to adequately assess their competency level was investigated. Eighty three nurses from all grades from a 590-bed restructured hospital in Singapore participated in this study. The majority of nurses (73.5%) were from acute wards but only half of them (53%) cared for dying patients in recent past. Consent to participate was indicated by completion and return of the questionnaire. The knowledge in palliative care was assessed using the 20-item self-administered Palliative Care Quiz for Nurses (PCQN).1 A random cut-off of 50% was used as a passing criteria. Additionally, a cross-sectional survey with 18 personal questions was used. Based on the results of the survey, the majority of nurses (>80%) felt that their training in dealing with dying patients was not adequate; however, their self-perceived adequacy in end-of-life care only partially correlated with the results of PCQN. 46% of all nurses did not pass the quiz and only 3 nurses (3%) scored ≥ 75%. The mean nurses' score was 9.77 ± 2.49 (out of 20). The domains with the lowest and highest percentages of correct answers were the ‘Psychosocial and spiritual aspects of palliative care' (36.5%) and the ‘Philosophy of palliative care' (51.8%), respectively. Notably, there was a statistically significant relationship between quiz passing rates and the designation of the nurses but not with their years of practice. This study identified the insufficient knowledge and competency amongst nurses and importance of their adequate education and training in palliative care.

Palliative care in everyday practice of radiation oncologists : Results from aweb-based survey among medical members of the German Society for Radiation Oncology (DEGRO).

Little is known about the attitudes of radiation oncologists towards palliative care, about their competences in this field, and about the collaboration with palliative care specialists. Our aim was to close this gap and understand more about the importance of an additional qualification in palliative care. Medical members of the German Society for Radiation Oncology (DEGRO) were electronically surveyed during November-December 2016. The survey was emailed successfully to 1110 addressees, whereas atotal of 205 questionnaires were eligible for analysis (response rate 18.4%). 55 (26.8%) of the respondents had an additional qualification in palliative care. Physicians who had an additional qualification in palliative care (PC qualification) reported palliative care needs for their patients more frequently than the other respondents (89.0 vs. 82.7%, p = 0.008). Furthermore, they were most likely to report ahigh confidence in palliative care competences, such as "communication skills & support for relatives" (83.6 vs. 59.3%, p = 0.013), "symptom control," and "pain management" (94.5 vs. 67.7%, p < 0.001 and 90.9 vs. 73.3%, p = 0.008, respectively). Respondents with aPC qualification more often involved palliative care specialists than the other respondents (63.3 vs. 39.3%, p = 0.007). Perceived main barriers regarding palliative care in radiation oncology included time aspects (9.2%), stigmata (8.5%), and the lack of interdisciplinary collaboration (8.5%). This analysis demonstrated that aspects of palliative care strongly impact on daily practice in radiation oncology. Additional qualifications and comprehensive training in palliative medicine may contribute to improved patient care in radiation oncology.

Developing a Research Agenda for Adult Palliative Care: A Modified Delphi Study.

Background: Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation. Objective: The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia. Design: A modified three-round Delphi survey. Setting/Subjects: Palliative care researchers and clinicians in Australia were invited to participate. Results: A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations. Conclusions: The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.