Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.
METHODS: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.
RESULTS: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.
CONCLUSIONS: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.
Background: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.
Methods: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.
Results: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).
Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.
Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
BACKGROUND: Achieving the preference of place of care and place of death of patients is a quality marker in palliative care. From a recent study, around 30% of the Hong Kong general population wished to die at home. In our study, residential care home for the elderly (RCHE) was also considered as home. The objective of this study was to investigate the preference of place of care and place of death of terminal cancer patients who received palliative care service in Hong Kong. We would also investigate the facilitating and obstructing factors for home death. Common factors associating with the preference of home death would also be examined.
METHODS: A hospital-based cross-sectional questionnaire survey was conducted in a local palliative care unit from 3 December 2018 to 10 January 2019. Univariate analysis was performed to evaluate factors associated with the preference of home death.
RESULTS: Total 72 patients were recruited. Overall, 22 (30.6%) patients wished to die at home ideally. After concerning reality and different choices, only 13 (18.1%) patients preferred home death. The most common chosen facilitating factor for home death was to provide support to carers (12 patients, 92.3%). Five patients (38.5%) chose it as the most significant facilitating factor for home death. It was inconclusive for the most common chosen and most significant obstructing factor for home death. There were no statistically significant factors found to be associated with the preference of home death.
CONCLUSIONS: The preference of home death of terminal cancer patients in Hong Kong is low. We hope that understanding more of the obstructing and relieving factors for home death can facilitate home death in the future.
BACKGROUND: Although patients often prefer less rather than more treatment at the end of life, in the absence of contrary instructions, the medical profession's de facto position is to treat aggressively. It is unknown whether a computer-based decision aid can affect treatment choices.
METHODS: Secondary analysis of a single-center, single-blind randomized controlled trial of an advance care planning (ACP) intervention among 200 patients with stage IV cancer. Participants were randomized to intervention (Making Your Wishes Known, a values-neutral, educational, computer-based decision aid) or control (standard living will + brochure). After reading a hypothetical clinical vignette, participants were asked whether they would want 11 medical/surgical treatments in that situation (dialysis, cardiopulmonary resuscitation [CPR], ventilator, feeding tube, etc). The median number of treatments wanted by participants was compared between groups, and logistic regression was used to compare between-group likelihood of not wanting each specific treatment.
RESULTS: The median number of treatments wanted was 1 in the intervention group versus 5 in the control (P < .001). For 6 of 11 treatments, the intervention group was significantly less likely than control to want aggressive treatment. Most notably, compared to control, intervention participants were less likely to want CPR (odds ratio [OR] = 0.31), short-term mechanical ventilation (OR = 0.34), short-term dialysis (OR = 0.38), surgery (OR = 0.37), and transfusion (OR = 0.21).
CONCLUSIONS: Individuals using an educational ACP decision aid were less likely to want aggressive medical treatment than those completing standard living wills. These findings have implications not only for how to respect patient's wishes but also potentially for reducing costs at the end of life.
OBJECTIVE: Serious illness conversations are complex clinical narratives that remain poorly understood. Natural Language Processing (NLP) offers new approaches for identifying hidden patterns within the lexicon of stories that may reveal insights about the taxonomy of serious illness conversations.
METHODS: We analyzed verbatim transcripts from 354 consultations involving 231 patients and 45 palliative care clinicians from the Palliative Care Communication Research Initiative. We stratified each conversation into deciles of "narrative time" based on word counts. We used standard NLP analyses to examine the frequency and distribution of words and phrases indicating temporal reference, illness terminology, sentiment and modal verbs (indicating possibility/desirability).
RESULTS: Temporal references shifted steadily from talking about the past to talking about the future over deciles of narrative time. Conversations progressed incrementally from "sadder" to "happier" lexicon; reduction in illness terminology accounted substantially for this pattern. We observed the following sequence in peak frequency over narrative time: symptom terms, treatment terms, prognosis terms and modal verbs indicating possibility.
CONCLUSIONS: NLP methods can identify narrative arcs in serious illness conversations.
PRACTICE IMPLICATIONS: Fully automating NLP methods will allow for efficient, large scale and real time measurement of serious illness conversations for research, education and system re-design.
Objective: The completion rates of advance treatment preferences in patients with hematologic malignancies are low. To improve these rates, the modifiable factors associated with completion need to be determined. This study aimed to examine the associations of patient attitudes toward, and knowledge about, advance directives (ADs) with the patient–caregiver dyadic completion of advance treatment directive surveys.
Methods: Using a nonexperimental correlational design, 44 patient–caregiver dyads completed the questionnaires, including a Korean-Advance Directive model. Cohen's kappa coefficient and multiple logistic regression analyses examined the extent of dyadic agreement and patient factors for the dyadic completion of the advance treatment directive survey, respectively.
Results: A minor group of patients (4.5%–11.4%) and caregivers (11.4%–18.2%) preferred aggressive end-of-life treatments, whereas more patients (47.7%) and caregivers (68.2%) supported hospice care. The only significant patient–caregiver dyadic concordance on treatment directives was for chemotherapy with a moderately high agreement (kappa = 0.60: 95% CI: 2.51–3.73). One score increase in AD knowledge and having a history of hematopoietic stem cell transplant (HSCT) increased the likelihood of dyadic completion of the treatment directive survey by 43% (p = 0.039) and 917% (p = 0.047), respectively.
Conclusions: The patient–caregiver dyads in the setting of hematologic malignancy had a moderately high concordance with chemotherapy but were not associated with other treatment options. A higher level of AD knowledge and HSCT were associated with dyadic completion of the AD survey. Educational support is important to increase knowledge regarding ADs through ongoing palliative discussions among hematologic patients and their caregivers.
Background: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries.
Objectives: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life.
Methods: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life.
Results: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001).
Conclusion: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.
This qualitative study examined the influence of hospice photography on patients' end-of-life experiences, families' experiences with hospice and grief, and hospice social work practice. Hospice photography was defined in this study as photographs of hospice patients taken by social workers in the service of legacy construction. Six social workers were interviewed about the photographs they had previously taken of patients. The themes revealed were categorized as hospice photography's perceived and potential effects on patients, families, and practice and the role of smartphone technology. The data suggested that hospice photography may positively affect patients, families, and practice due to its reported ability to build and enhance rapport, facilitate therapeutic discussion, affirm patients' dignity, worth, and self-esteem, provide opportunities for bearing witness, and increase social workers' job satisfaction. Potential effects of the use of hospice photography in social work practice included the ability to tangibly contextualize the end-of-life experience; improve termination and closure; and provide comfort during the grieving process.
Background: This study aimed to investigate lung cancer patients and attitudes of their caregivers toward advance directives (ADs) in China.
Methods: A cross sectional study was conducted in the Department of Oncology outpatient clinic in West China Hospital, Sichuan University. A questionnaire was used to survey the attitudes of lung cancer patients and caregivers toward ADs.
Results: A total of 148 lung cancer patients and 149 caregivers were enrolled into the study. Of these, 94.6% and 89.9% of patients and caregivers had not heard of AD and none of those in the study had ever signed an AD. A total of 79.7% patients and 75.2% caregivers were willing to sign ADs after they were provided with information. Patients who preferred the end of life period to sign ADs were 5.4 times more likely to have ADs than patients who chose to sign ADs when their disease was diagnosed (P < 0.05, 95%CI [1.27–22.93]). Caregivers who were reluctant to undergo chemotherapy when diagnosed with cancer were 2.16 times more likely to sign ADs than those willing to receive chemotherapy (P < 0.05, 95%CI [1.20–3.90]).
Conclusions: In China, lung cancer patients and their caregivers showed lack of knowledge about ADs, and the completion rate of ADs was extremely low. However, participants were positive about ADs and public education on ADs may help to increase the completion rate of ADs in China.
BACKGROUND: Hospices provide multidimensional care. In the Netherlands, patients with <3 months estimated life expectancy have access to hospice care. Insight into patients admitted to hospices and the care provided is lacking. In preparation for a national multicenter study, a pilot study was performed.
OBJECTIVE: The primary objective was to test the appropriateness of the study procedures and the availability of hospice patient records (HPRs), and patient and care characteristics.
METHOD: A cross-sectional pilot study was performed using a descriptive exploratory design. Sixteen hospices were invited to participate, and HPRs from 8 deceased patients per hospice were selected. Data were collected using self-developed electronic case report forms.
OUTCOMES: (1). Appropriateness of procedures: availability of HPRs and identified barriers and strategies. (2) Availability of patient and care characteristics in HPRs.
RESULTS: In total, 104 HPRs of patients from 13 hospices were enrolled. Various types of HPRs were found with different availabilities: nurses' records were most available (98%) compared to volunteers' records (62%). Overarching barriers were as follows: ethical issues, lack of knowledge, and lack of communication. Information about the illness was most available (97%), whereas descriptions of experienced symptoms were least available (10%).
CONCLUSION: Collecting HPRs is difficult and time-consuming. Specifically, data from separate records of home care nurses and general practitioners were difficult to come by. Patient and care characteristics were alternately present, which led to an extension of data collection in HPRs to 3 time periods. Piloting is essential to adjust study procedures and outcome measures to ensure a feasible national multicenter hospice study.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.
Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.
Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.
Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.
In the UK, life extending, end-of-life (EoL) treatments are an exception to standard cost-per-quality-adjusted life year (QALY) thresholds. This implies that greater value is placed on gaining these QALYs, than QALYs gained by the majority of other patient groups treated for anything else in the health system, even for other EoL contexts (such as quality of life (QoL) improvements alone). This paper reports a Person Trade-Off (PTO) study to test whether studies that find societal support for prioritising EoL life extensions can be explained by the severity, in terms of prospective QALYs loss, of the non-terminal comparator scenarios. Eight health scenarios were designed depicting i) QoL improvements for non-EoL temporary (T-QoL) and chronic (C-QoL) health problems and ii) QoL improvements and life extensions (LEs) for EoL health problems. Preferences were elicited from a quota sample of 901 Scottish respondents in 2016 using PTO techniques via Computer Assisted Personal Interview (CAPI). Our results indicate that there is little evidence to suggest that the severity of non-EoL comparator scenarios influence preferences for EoL treatments. Respondents do not appear to have a preference for EoL over non-EoL health gains; instead there is some indication that non-EoL health gains are preferred, particularly when compared to EoL-LE health gains. Comparing between QoL and life extending EoL scenarios, our results suggest QoL improvements are preferred to life extensions. Overall, results challenge current UK EoL policy which gives additional weight to EoL health gains, particularly EoL life extensions in the case of the National Institute for Health and Care Excellence (NICE).
BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach.
METHODS: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer's Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson's Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI.
RESULTS: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r2=0.024, P=0.0380), patient health-related quality of life (PDQ-39, r2=0.161, P<0.0001), caregiver depression (HADS Depression, r2=0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r2=0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r2=0.088, P<0.0001) were significant contributors to ZBI scores.
CONCLUSIONS: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.
OBJECTIVE: To analyse the level of knowledge and attitudes concerning living wills of nurses working in 3 hospitals of Servizo Galego de Saúde (Spain).
METHOD: Descriptive, cross-sectional, multi-centre study. Stratified sampling was carried out with nurses from the University Hospital Complexes of Ourense, Ferrol and Vigo. A sample size of 239 individuals was calculated. The data was collected during the first semester of 2018 using a validated self-administered questionnaire («Cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales»).
RESULTS: A total of 262 nurses participated. Fifty percent believe that health professionals are obliged to inform about living wills. Two percent consider that they have enough information on the subject, and this is demonstrated in the knowledge questions, where between 61%-93% fail in the questions related to the documentation, use, and their legal aspects. Eighty-four percent consider that they have the obligation to uphold the values and beliefs of patients, and 89% that patients have the right to receive and decide on the right care. Thirteen percent consider that patients are not well informed about living wills, and 83% would recommend to chronic patients that they complete a living will.
CONCLUSIONS: Nurses have a great lack of knowledge about the legal aspects and the use of living wills, which makes them feel unable to inform their patients about them. Despite of the lack of knowledge, their attitude is positive and most of them state that they would recommend them to their patients.
Ethical arguments about assisted dying often focus on whether or not respect for an individual's autonomy gives a reason to offer them an assisted death if they want it. In this paper, I present an argument for legalising assisted dying which appeals to the autonomy of people who don't want to die. Adding that option can transform the nature of someone's choice set, enabling them to pursue other options voluntarily where that would otherwise be harder or impossible. This does not contradict the more familiar arguments for legalising assisted dying based on the autonomy of those who seek to die. But it does suggest that a wider constituency of support for that legislative change might be created by emphasising that one need not be in that position to be benefited by the change.
The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
Patients' right to decide what happens to their bodies, especially around the end of life, is enshrined in legislation across the world, but questions often arise about whether a patient is capable of meaningfully participating in such decisions. Because of uncertainties about capacity, care providers and administrative agencies often must decide whether to honor, or even to elicit, patients' wishes. General decision-making capacity has been well studied, but few clear protocols exist for ascertaining capacity at the end of life. Without clear guidelines about how to assess capacity, medical staff may ignore assessment and operate from invalid assumptions. In the interests of protecting patients' agency, we propose a straightforward protocol for assessing capacity to make decisions about end-of-life interventions.