BACKGROUND: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
OBJECTIVE: This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
DESIGN AND PARTICIPANTS: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
ETHICAL CONSIDERATIONS: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
FINDINGS: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
DISCUSSION: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
CONCLUSION: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.
BACKGROUND: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.
AIMS: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
DESIGN: A systematic review of home palliative care interventions in dementia.
DATA SOURCES: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.
RESULTS: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.
CONCLUSIONS: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables.
AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility.
DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods.
SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care.
RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items.
CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
Background: An international panel achieved consensus on 9 need-based and 2 time-based major referral criteria to identify patients appropriate for outpatient palliative care referral. To better understand the operational characteristics of these criteria, we examined the proportion and timing of patients who met these referral criteria at our Supportive Care Clinic.
Methods: We retrieved data on consecutive patients with advanced cancer who were referred to our Supportive Care Clinic between January 1, 2016, and February 18, 2016. We examined the proportion of patients who met each major criteria and its timing.
Results: Among 200 patients (mean age 60, 53% female), the median overall survival from outpatient palliative care referral was 14 (95% confidence interval 9.2, 17.5) months. A majority (n = 170, 85%) of patients met at least 1 major criteria; specifically, 28%, 30%, 20%, and 8% met 1, 2, 3, and = 4 criteria, respectively. The most commonly met need-based criteria were severe physical symptoms (n = 140, 70%), emotional symptoms (n = 36, 18%), decision-making needs (n = 26, 13%), and brain/leptomeningeal metastases (n = 25, 13%). For time-based criteria, 54 (27%) were referred within 3 months of diagnosis of advanced cancer and 63 (32%) after progression from = 2 lines of palliative systemic therapy. The median duration from patient first meeting any criterion to palliative care referral was 2.4 (interquartile range 0.1, 8.6) months.
Conclusions: Patients were referred early to our palliative care clinic and a vast majority (85%) of them met at least one major criteria. Standardized referral based on these criteria may facilitate even earlier referral.
Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver’s barriers to pain management and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-item Caregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.
OBJECTIVES: Recent studies have shown that the early provision of palliative care (PC) integrated into oncology in the hospital has beneficial effects on the quality of life of people who are dying and their family caregivers. However, a model to integrate palliative home care (PHC) early in oncology care is lacking. Therefore, our aim is to develop the Early Palliative Home care Embedded in Cancer Treatment (EPHECT) intervention.
METHODS: We conducted a phase 0-1 study according to the Medical Research Council framework. Phase 0 consisted of a literature search on existing models for early integrated PC, and focus groups with PHC teams to investigate experiences with being introduced earlier. In phase 1, we developed a complex intervention to support the early integration of PHC in oncology care, based on the results of phase 0. The intervention components were reviewed and refined by professional caregivers and stakeholders.
RESULTS: Phase 0 resulted in components underpinning existing interventions. Based on this information, we developed an intervention in phase 1 consisting of: (1) information sessions for involved professionals, (2) general practitioner as coordinator of care, (3) regular and tailored home consultations by the PHC team, (4) a semistructured conversation guide to facilitate consultations, and (5) interprofessional and transmural collaboration.
CONCLUSION: Taking into account the experiences of the PHC teams with being involved earlier and the components underpinning successful interventions, the EPHECT intervention for the home setting was developed. The feasibility and acceptability of the intervention will be tested in a phase II study.
BACKGROUND: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams.
OBJECTIVE: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare.
METHOD: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis.
RESULTS: The CES was found to offer possibilities for meeting in an ethical 'free-zone' where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints.
CONCLUSION: Participating in CES was experienced as meeting in an ethical 'free-zone' and seemed to be a means of facilitating integration of palliative and heart-failure care.
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."
Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention?
Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7).
Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability.
Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.
Background: Dementia is a terminal illness making the palliative and hospice approach to care appropriate for older people with advanced dementia.
Objective: To examine clinical and health services outcomes of a quality improvement pilot project to provide home hospice care for older people with advanced dementia.
Study design: Twenty older people with advanced dementia being treated in the Maccabi Healthcare Services homecare program, received home hospice care as an extension of their usual care for 6–7 months (or until they died) from a multidisciplinary team who were available 24/7. Family members were interviewed using validated questionnaires about symptom management, satisfaction with care, and caregiver burden. Hospitalizations prevented and medications discontinued, were determined by medical record review and team consensus.
Findings: The findings are based on 112 months of care with an average of 5.6 (SD 1.6) months per participant. The participants were on average 83.5 (SD 8.6) years old, 70% women, in homecare for 2.8 (SD 2.0) years, had dementia for 5.6 (SD 3.6) years with multiple comorbidities, and had been hospitalized for an average of 14.0 (SD 18.1) days in the year prior to the project. Four patients were fed via artificial nutrition. During the pilot project, 4 patients died, 2 patients withdrew, 1 patient was transferred to a nursing home and 13 returned to their usual homecare program. The home hospice program lead to significant (p < 0.001)improvement in: symptom management (score of 33.8 on admission on the Volicer symptom management scale increased to 38.3 on discharge), in satisfaction with care (27.5 to 35.3,), and a significant decline in caregiver burden (12.1 to 1.4 on the Zarit Burden index). There were five hospitalizations, and 33 hospitalizations prevented, and an average of 2.1(SD 1.4) medications discontinued per participant. Family members reported that the professionalism and 24/7 availability of the staff provided the added value of the program.
Conclusions: This pilot quality improvement project suggests that home hospice care for older people with advanced dementia can improve symptom management and caregiver satisfaction, while decreasing caregiver burden, preventing hospitalizations and discontinuing unnecessary medications. Identifying older people with advanced dementia with a 6 month prognosis remains a major challenge.
In December 2017, my mother was diagnosed with an end-stage pancreatic cancer. In the following weeks, she had to be taken to the emergency room frequently due to worsening infections, electrolyte imbalance, and vertigo, which often led to delirium. The doctors treating her were well qualified but lacked education and training about palliative and end-of-life care issues, which was reflected in their clinical practice. They kept treating her medical conditions as if she could be cured; no one recommended comfort measures only. After much deliberation and with some degree of hesitation, I raised the idea of palliative care with the rest of my family. Asking for palliative care-that is, accepting that the medical treatments were not working-sounded like the antithesis of my clinical work as a doctor and my duty as a son. To my surprise, my family agreed; we refused yet another hospital admission and brought her home. She has been spending the last few months in the comfort of her home being cared for by her loving family.
CONTEXT: The end-of-life period is characterized by increased hospital utilization despite patients' preferences to receive care and die at home.
OBJECTIVES: To evaluate the impact of interventions aimed at planning for a home death (Yellow Folder) and managing symptoms in the home (Symptom Response Kit) on place of death and hospital utilization among palliative home care patients.
METHODS: This was an ecologic and retrospective cohort study of palliative home care patients in southeastern Ontario from April 2009 to March 2014. Linked health administrative and clinical databases were used to identify palliative home care patients and their receipt of the interventions, hospitalizations, emergency department visits, and place of death. Bivariable and multivariable regression was used to evaluate outcomes according to patients' receipt of intervention(s).
RESULTS: The proportion of patients who died in the community increased after implementation of the interventions, from 42.8% to 48.5% (p < 0.0001). Compared to patients who received neither intervention, patients who received the Yellow Folder or Symptom Response Kit had an increased likelihood of dying in the community, with the largest relative risk observed in patients who received both interventions (relative risk=2.20, 95% confidence interval 2.05-2.36). Receipt of these interventions was only associated with reductions in hospitalizations or emergency department visits in the six months prior to death.
CONCLUSION: Patients who received the Yellow Folder or Symptom Response Kit were more likely remain at home at the end-of-life. This association was stronger when these interventions were used together.
Background: Casarett et al. tested an intervention to improve timeliness of referrals to hospice. Although efficacious in the nursing home setting, it was not tested in other settings of care for seriously ill patients. We, therefore, adapted Casarett's intervention for use in home health (HH).
Objective: To assess feasibility, acceptability, and patient outcomes of the adapted intervention.
Design: We conducted a nine-week observational pilot test.
Setting/Subjects: We conducted our pilot study with two HH agencies. Eligible patients included those who were high risk or frail (identified by the agencies' analytic software as being moderate to high risk for hospitalization or a candidate for hospice referral). Clinical managers identified eligible patients and registered nurses then delivered the intervention, screening patients for hospice appropriateness by asking about care goals, needs, and preferences and initiating appropriate follow-up for patients who screened positive.
Measurements: We collected quantitative data on patient enrollment rates and outcomes (election of hospice and/or palliative care). We collected qualitative data on pilot staff experience with the intervention and suggestions for improvement.
Results: Pilot HH agencies were able to implement the intervention with high fidelity with minimal restructuring of workflows; 14% of patients who screened positive for hospice appropriateness elected hospice or palliative care.
Conclusions: Our findings suggest the adapted intervention was feasible and acceptable to enhance timeliness of hospice and palliative care referral in the HH setting. Additional adaptations suggested by pilot participants could improve impact of the intervention.
A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
Background: In recent years, there has been a rising demand for home hospice care in Singapore and globally. Studies have shown that polypharmacy and the use of potentially inappropriate medications (PIMs) remain prevalent in palliative care patients. This is commonly associated with increased adverse drug reactions and hospitalization. However, research on medication use in hospice care and its appropriateness is lacking in Asian settings.
Objective: (1) To describe the medication use among cancer and non-cancer patients in home hospice care settings in Singapore at two time points, on the day of referral and at death. (2) To describe the discontinuation patterns of medications and assess their appropriateness.
Design: This retrospective study analyzed 6158 cancer and 780 non-cancer cases referred to HCA Hospice Care (HCA), Singapore. Sociodemographic, clinical, and medication data were extracted from electronic medical records. The OncPal Deprescribing Guideline (OncPal) was utilized to assess the appropriateness of discontinuation of medications.
Results: Non-cancer patients had a higher mean number of medications at admission and death, with 7.84 and 7.07 medications, respectively (p < 0.05), compared with cancer patients, with 5.65 and 5.69 medications, respectively (p = 0.372). The top medications for all patients were laxatives, opioids, and proton pump inhibitors (PPIs). These were mainly used for symptom control. PPI was the main PIM identified by OncPal.
Conclusion: Despite being close to end of life and on hospice care, majority of patients still experienced significant medication burden. Continuous assessment of PIMs for their appropriateness based on clinical indications is imperative to reduce polypharmacy.
In this narrative, a third-year medical student recounts an experience with a patient she had while accompanying hospice and palliative workers on home visits. It was a tragic scene to witness, but somehow she left with spirits light. The afternoon with this woman-who suffered from Alzheimer's Disease-stood out. The medical student still thinks about her to this day.
BACKGROUND: Home-based palliative care is care of the patient in their home, while doctors and other healthcare providers (HCPs) make visits as required. Family involvement naturally cultivates a relationship between HCPs and the family. Once the patient dies and home-based palliative care ends, this relationship is abruptly terminated, which may be challenging to both the family and the HCPs. The objective of this study was to understand the thoughts and opinions of HCPs and families on their encountered loss of relationship at the end of home-based palliative care.
METHODS: Perceptions of 63 participants (32 HCPs and 31 family members) were explored using semi-structured interviews and the qualitative research methodologies of grounded theory. HCPs were interviewed at the Temmy Latner Centre for Palliative Care (TLCPC), a home-based palliative care group of physicians, and 2 hospitals in Toronto, while family members were recruited from TLCPC's records of deceased patients.
RESULTS: Six overarching themes, relating to HCP-family relationship dynamics, the experience of loss of relationship, and potential solutions, were derived from the data: (I) home palliative care is intimate; (II) dissatisfaction is experienced with abrupt relationship ending; (III) families benefit from open communication, especially after patient death; (IV) HCPs recognize the insufficiency in bereavement resources; (V) benefits are recognized for a system to ease loss of relationship, and lastly; (VI) challenges with introducing such a system concern HCP.
CONCLUSIONS: Overall, families and HCPs do not like the loss of relationship post-patient death, and recognize the potential benefits of an approach that would allow for communication going forward.
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’.