Context: Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.
Objectives: This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated Palliative Care Screening Tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilisation of life-sustaining treatment during the last three months of life.
Methods: In this prospective study, we used PCST to evaluate patients’ palliative care needs between 2015 and 2016 and followed patients for 3 months. ACP with advance directives (AD) were systematically offered to all patients with PCST score =4.
Results: Of 47,153 hospitalized patients, 10.4% had PCST score =4. During follow-up, 2,121 individuals died within three months of palliative care screening: 1,225 (25.0%) with PCST score =4 and 896 (2.1%) with PCST score <4. After controlling for co-variates, PCST score =4 was significantly associated with a higher mortality within 3 months of screening (adjusted odds ratio [AOR], 6.86; 95% confident interval [CI], 6.16-7.63). Moreover, ACP consultation (AOR=0.78, 95%CI: (0.66-0.92) and AD completion (AOR=0.49, 95%CI: 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last 3 months of life.
Conclusions: We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in East Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last 3 months of life.
Palliative care is an approach to the care of patients, affected by serious illness, and their families that aims to reduce suffering through the management of medical symptoms, psychosocial issues, spiritual well-being, and setting goals of care. Patients and families affected by a neurodegenerative illness have significant palliative care needs beginning at the time of diagnosis and extending through end-of-life care and bereavement. We advocate an approach to addressing these needs where the patient's primary care provider or neurologist plays a central role. Key skills in providing effective palliative care to this population include providing the diagnosis with compassion, setting goals of care, anticipating safety concerns, caregiver assessment, advance care planning, addressing psychosocial concerns, and timely referral to a hospice. Managing distressing medical and psychiatric symptoms is critical to improving quality of life throughout the disease course as well as at end-of-life. Many symptoms are common across illnesses; however, there are issues that are specific to the most common classes of neurodegenerative illness, namely dementia, parkinsonism, and motor neuron disease. Incorporating a palliative approach to care, although challenging in many ways, empowers physicians to provide greater support and guidance to patients and families in making the difficult journey through a neurodegenerative illness.
Palliative care in Parkinson's disease (PD) has developed significantly in the past five years. The presence of unmet palliative care need, similar to that in malignant conditions, is well established, but may not always be identified by clinicians in everyday practice. To address this, clinicians must be able to rapidly identify, triage, assess and address unmet needs and monitor response to intervention. This is also central to establishing integrated models of care for PD. Systematic evaluation of need can be facilitated by structured assessment tools, and several such tools have now been described for PD. This article reviews the palliative care assessment tools which have been developed for PD, both for patients and also for caregivers. It sets out the psychometric properties of these tools and describes the way in which they may be applied within an overall, systematic assessment of unmet need.
OBJECTIVE: To investigate the feasibility of using the Patient Dignity Question (PDQ) in a small rural hospice setting.
DESIGN: Prospective study.
SETTING: The 5-bed Algonquin Grace Hospice in Huntsville, Ont.
PARTICIPANTS: Nineteen patients who met the research criteria and who were admitted to the hospice from September 2015 to December 2016.
METHODS: Participants completed the Patient Dignity Inventory and modified versions of the Edmonton Symptom Assessment Scale and Integrated Palliative Care Outcome Scale before and after the PDQ interviews.
MAIN FINDINGS: While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments (eg, being a good parent), hopes (eg, one's need of being respected), and fears (eg, concerns about pets) that emerged from participants' stories. Hospice staff found the documents from PDQ interviews to be very valuable in their understanding of patients. Staff and patients unanimously wanted the program to continue. An unexpected benefit was the response of the patients' families who were deeply moved by the legacy documents, often sharing them following their family member's death.
CONCLUSION: The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits patients, staff, and families. Using the PDQ at the hospice helped patients feel truly heard, and increased caregivers' compassion and understanding of patients' needs.
BACKGROUND: Life-limiting illness plagues Native Americans, yet access to palliative and end-of-life care, including hospice care, is severely limited.
AIM: This study aimed to explore palliative and hospice care with Native American elders and tribal health educators on a Northern Plains reservation in the US.
METHODS: Using a community-based participatory approach, participants discussed the cultural acceptability of palliative and hospice care in their tribal community. Monthly talking circles were held over a 5-month period.
RESULTS: Opportunities were present for improving cultural awareness and advance directive education to elders. Challenges raised were related to infrastructure, tribal government and the Indian Health Service. Needs identified included cultural awareness and language education for health-care providers and advance directive education.
CONCLUSION: Community-based participatory research is useful when working with indigenous populations. Health professionals providing services to Native American communities must embrace cultural differences, seeking to learn from the culture itself how to best meet its people's needs.
BACKGROUND: Recommendations of the European Association for Palliative Care have been proposed to strengthen the provision of palliative care and it is clear that people with dementia can benefit from palliative care, but no research so far addresses the beliefs of university students and professionals in the social, medical and other science fields in South East Europe regarding the need from palliative care. The objective of this study is to explore when students and professionals consider a person with dementia in need of palliative care and to compare their opinions in three South East European countries.
SUBJECTS AND METHODS: An anonymized questionnaire was used based on van Riet Paap et al. (2015) case-vignette. A sample of 1287 participants (student nurses, professional nurses, psychology students, professional psychologists, student doctors, professional doctors, and students and professionals from other non-relevant to medical and social care sciences) was examined in Greece, Bulgaria and Romania.
RESULTS: The open responses to the "when" question revealed the categories: after her diagnosis/after the first symptoms; when she and her family cannot cope; at the advance of symptoms; all the time; when she behaves aggressively; I am not sure/there is no specific point. Unexpectedly, age, professional status and field of studies were not found to be significant predictors, but only the country of origin was found to contribute to the differences in the participants' answers regarding the start of palliative care.
CONCLUSION: Although professional-student status and relevancy of subject did not predict opinions, the country of origin predicted controversies for the proposed time point of considering a person with dementia in need of palliative care.
BACKGROUND: Patients with palliative care needs, require support with their physical needs, but also with their emotional, spiritual and social needs. Patient-Centred Care (PCC) may help organizations to support these patients according to their needs and so improve the quality of care. PCC has been shown to consist of eight dimensions, including for instance access to care and continuity of care, but these eight dimensions may not be equally important in all care settings and to all patients. Furthermore, the views of those involved in care provision may affect the choices they make concerning care and support to patients. Therefore, insight into how professionals and volunteers involved in palliative care delivery view PCC is important for understanding and improving the quality of care in the palliative sector.
METHODS: This study was conducted in the palliative care setting (hospices and hospitals) in the Netherlands. Views on palliative care were investigated using the Q-methodology. Participants were asked to rank 35 statements that represented the eight dimensions of PCC in palliative care settings, and to explain their ranking during a follow-up interview. Ranking data were analysed using by-person factor analysis. Interview materials were used to help interpret the resulting factors.
RESULTS: The analysis revealed two distinct viewpoints on PCC in palliative care: 'The patient in the driver seat', particularly emphasizing the importance of patient autonomy during the last phase of life, and 'The patient in the passenger seat', focussed on the value of coordination between professionals, volunteers and patients.
CONCLUSIONS: The most distinguishing aspect between views on PCC in palliative care concerned control; a preference for the patient in the driver's seat versus shared decision-making by a team consisting of patient, professionals and volunteers. Different types of care and support may be most adequate to satisfy the different needs and preferences of patients with either of these views.
With a growing population of transgender-identified elders in the United States, their unique spiritual end-of-life needs are coming to light. This article presents a case study of a hospice volunteer who used skillful means as an artist to help a transgender-identified woman express her spirituality in the last 6 months of her life. After data analysis, 4 themes emerged related to the expression of spirituality by lesbian, gay, bisexual, transgender, and queer (LGBTQ) elders at end of life. The themes that emerged included (1) the human element in advocacy for spiritual care, (2) the importance of safe spaces for reflection and meditation, (3) the importance of skillful means to work with LGBTQ people, and (4) acknowledgement of gender identity as a spiritual need. This case study serves as a springboard to advance research into the end-of-life needs of LGBTQ elders and the ways in which members of the hospice team can support spiritual care and alleviate suffering for this population.
INTRODUCTION: Palliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.
METHODS AND ANALYSIS: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.
ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.
TRIAL REGISTRATION NUMBER: ISRCTN15727711.
Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population.
Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting.
Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se.
Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants.
Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided.
Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Context: The psychosocial and spiritual needs of individuals with life-limiting conditions in low- or middle-income countries have not been well described. Understanding these needs is important to providing holistic palliative care.
Aim: This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh.
Subjects and Methods: Individuals with advanced incurable illnesses (advanced cancer and HIV/AIDS) from a wide geographical distribution across Bangladesh were interviewed about their health status, emotional and spiritual experiences with their illness, coping and support systems, and greatest needs and fears.
Results: We interviewed 221 individuals with incurable cancer (82%) or HIV/AIDS (18%). Self-reported health status was poor or very poor for 48%, and 44% reported feeling unhappy all of the time. The majority (61%) rated their current level of unhappiness as 10/10. Spouses (50%), children (15%), and parents (13%) were the most common caregivers. Money and medical care were equally the most common needs (46%). Participants' greatest fears were for the future of their children (38%), being in pain (29%), and dying (28%).
Conclusions: There is a significant burden of psychosocial and spiritual concerns among patients with advanced incurable illness in Bangladesh, with sadness being very frequent and of high intensity. Family and friends provide significant emotional and practical support to patients who are seriously ill, but very few patients access any professional support for these concerns.
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived.
Materials and Methods: Sixty caregivers of children (30 survivors and 30 nonsurvivors), admitted in the pediatric intensive care unit and general pediatric unit, were recruited over a period of 1 year. Mixed qualitative methods were used to collect information from parents on EOL care perspectives.
Results: Demographic, disease, and treatment-related characteristics were not significantly different between nonsurvivor and survivor groups. The caregivers of nonsurvivors versus survivors showed no significant differences as regards optimal care (76.67% vs. 56.67%), social support (76.6% vs. 66.67%), and frequent recitation of scriptures (30.77% vs. 45.83%). Mean medical expenditure among children receiving EOL care was Rs. 40,883 (range: Rs. 800-5 lakhs). Regression results revealed that for every 1 day of increase in hospital stay, cost of hospitalization for dying children increased by Rs. 3000 (P = 0.0001). Medical insurance was reported by only minority of the cases (5%). Several themes emerged in the focus group discussions with care providers which highlighted the importance of communication and need for emotional, social, and financial support. EOL decision was taken in only two of the nonsurviving children.
Conclusions: The study offers useful insight about social, financial, and religious "end-of-life" needs among terminally sick children and thereby sensitizes the health-care providers to optimize their care at this niche period.
Physical medicine and rehabilitation (PM&R) is a specialty of medicine focused on optimizing function and quality of life for individuals with physical impairments, injuries, or disabling illnesses. Given the sometimes acute nature of the loss of function and even loss of independence, there are significant palliative care (PC) needs within patients seen by PM&R. This article, written by a team of PM&R and PC specialists, aims to help the PC team better understand the world of postacute care, expand their toolkit for treating musculoskeletal and neurological symptoms, improve prognostication for patients with brain and spinal cord injuries, and decide when patients may benefit from PM&R consultation and support. There is significant overlap between the populations treated by PM&R and PC. Better integration between these specialties will help patients to maintain independence as well as advance excellent patient-centered care.
Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity.
Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life.
Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them.
Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability).
Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.
Supporting and managing end of life in emergency departments (EDs) is often difficult and is becoming increasingly commonplace. Patients who present at the end of life are often triaged as low priority as their signs and symptoms are not considered life-threatening and they are often exposed to unnecessary and inappropriate tests and investigations. This results in increased stress and distress for patients and their family and carers in an environment that is not suited to this type of care. There are few specified palliative care pathways that provide the level of care required by these patients. This article describes the Time is Precious (TiP) project, the development of a palliative care decision-making framework to support and address the needs of patients who present to an ED at end of life, in a timely and appropriate manner. It also reports findings of an evaluation of TiP that show patients are identified more quickly and cared for more appropriately as nursing and medical care can be tailored to meet their needs.
BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social or spiritual nature. This document encourages the use of validated assessment tools to recognise such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
Background: People with sickle cell disease (SCD) have a life expectancy of <50 years, so understanding their end-of-life care is critical.
Objective: We aimed to determine where individuals with SCD were dying and their patterns of care in the year preceding death to highlight end-of-life research priorities and possible opportunities for intervention.
Design: Using the California SCD Data Collection Program database (containing administrative data, vital records, and Medicaid claims), we examined people with SCD who died between 2006 and 2015 (cases) at age <80 years and examined their hospital and emergency department (ED) utilization in their last year of life. Comparators included living controls with SCD matched 1:1 based on age, analysis year, insurance, and income.
Results: We identified 486 people with SCD (cases) who died at a median age of 45 years (SD: 16 years). Most died in the hospital (63%) and ED (15%). In their last year of life, people with SCD were hospitalized for an average of 42 days (SD: 49 days) over five admissions. Inpatient admissions and ED visits were stable throughout the year until the month before death when acute care utilization sharply increased. In their last year of life, cases had more hospitalizations than controls, but similar ED utilization.
Conclusions: People with SCD are dying acutely at a young age and most die in the hospital and the ED. Since clinicians caring for people with SCD currently cannot predict which acute events may be life-threatening, a comprehensive palliative approach to people with SCD must extend beyond chronic pain management and psychosocial support to include advance care planning.
BACKGROUND: To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer.
METHODS: This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability.
RESULTS: 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0–10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach’s alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach’s alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min.
CONCLUSIONS: The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.