Terminally-ill Patients Research Articles

“They are not taking it seriously”: Constructing family dynamics in end-of-life care interactions in Hong Kong

In Chinese culture, the family is central to the decision-making around care provided to terminally-ill patients. Previous research examined the preferences that patients and relatives have in regard to the family’s role in end-of-life care. Our article takes a discourse analytic perspective and focuses on how familial dynamics are interactionally constructed by patients in audio-recorded end-of-life care consultations in Hong Kong hospitals. We document three ways that patients construct family dynamics. First, patients expressed a reluctance to talk to their family members about their condition. Second, patients talked about their families as being reluctant in accepting and “believing” the reality of their condition. Third, patients reported an epistemic divide between themselves and their family regarding knowledge and understanding of their illness. Our findings provide insights into how to conceptualize family dynamics in interactional terms. We also reflect on how our findings can complement existing research on end-of-life care in Chinese contexts.

Is Cryocide an Ethically Feasible Alternative to Euthanasia?

While some countries are moving toward legalization, euthanasia is still criticized on various fronts. Most importantly, it is considered a violation of the medical ethics principle of non-maleficence, because it actively seeks a patient's death. But, medical ethicists should consider an ethical alternative to euthanasia. In this article, we defend cryocide as one such alternative. Under this procedure, with the consent of terminally-ill patients, their clinical death is induced, in order to prevent the further advance of their brain's deterioration. Their body is then cryogenically preserved, in the hope that in the future, there will be a technology to reanimate it. This prospect is ethically distinct from euthanasia if a different criterion of death is assumed. In the information-theoretic criterion of death, a person is not considered dead when brain and cardiopulmonary functions cease, but rather, when information constituting psychology and memory is lost.

Comparative analysis of symptom burdens and influential factors among diverse terminally-ill patients.

The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups. This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed. Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden. This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.

Effects of dignity therapy on psychological distress and wellbeing of palliative care patients and family caregivers – a randomized controlled study

BackgroundThis study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.MethodsIn this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.ResultsThe coalesced group (DT and DT +) revealed a significant increase in patients’ perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group’s HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.ConclusionsThe DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one’s final days.Trial registrationThis study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.

Potential Drug Interactions in Terminally-Ill Cancer Patients, a Report from the Middle East

This study aims to evaluate the epidemiology of potential drug interactions in terminally-ill cancer patients receiving exclusively supportive care. In this cross-sectional study, during a 6-month follow-up, we considered the medical record of terminally-ill cancer patients referred to palliative care at the cancer center in Isfahan, Iran. Potential drug–drug interactions (DDIs) were assessed by Lexi-Interact ver.1.1 online software. During the study period, 133 terminally-ill cancer patients were recruited. We detected 1678 DDIs with moderate or major severity levels. Among them, 330, 219, 32, 1075, and 51 interactions were categorized in B, C, D, and X drug interactions categories, respectively. One hundred and twenty-two patients (91.73%) encountered at least one potential drug–drug interaction during the end of life care. Mechanistically, most drug–drug interactions (64.5%) were pharmacodynamics. The most frequent pharmacological class of drugs responsible for DDIs were quetiapine (91 cases), oxycodone (87 cases), and sertraline (55 cases). Interaction between oxycodone and sertraline was found to be in the top 10 detected DDIs (13.7%). Our results showed that potentially moderate or major drug–drug interactions often occur among terminally-ill cancer patients and the clinical significance of DDIs should be considered meticulously in the palliative care cancer setting.

Religious and Spiritual assistance of people in palliative care. Practical Assessment

"The primary purpose of this study is to understand if/how patients of hospice healthcare require ‘Spiritual’ or/and ‘Religious’ assistance and if its involvement in palliative care helps greatly. We have built a correlative of two scales and administrated them on the same sample, along with complete demographics questions to a group of people under palliative care and several people directly connected with patients, relatives- families. This methodological study is designed to assess the reliability and validity of two scales simultaneously for the same terminally ill patients (TIP): Paloutzian and Ellison’s (1982) Spiritual Well-being Scale. The scale was administered to 49 individuals, of which 45 are patients and 4 family members caring for a terminally ill relative. Background: Coping is a multifactorial and individual process related to responding to stressful situations, such as being a caregiver of a person with health conditions or terminal illness [such as in hospice]. Spiritual [S] / religious [R] coping is an essential internal resource used by individuals enduring stressful situations or, in this particular case, confronting imminent death. Instruments: The 14-item Brief RCOPE is widely used to assess religious coping. The other instrument we have used for S/R assessment is the Spiritual Well-Being (SWB) Scale, a general measure of the subjective quality of life. Neither one is available in the Romanian version Ciocan Tudor-Cosmin (2023) developed following Romanian culture. He worked with Professor Ray Paloutzian - author of the latter scale - to translate and validate the use of the translated scales. Objective: To investigate the S/RWB among palliative care patients in Romania and to identify the correlates of Spiritual and Religious Well-Being. Secondary: To translate, adapt and validate both the 14-item Brief RCOPE and SWBS in Romanian for caregivers of palliative patients facing death. Method: The methodological guideline provided by Ray Paloutzian and Craig W. Ellison was used to examine the psychometric properties of SWBS, while the manual provided by Kenneth Pargament on his website helped us accommodate the Brief RCOPE to Romanian culture and understanding. Results: The linguistic and conceptual equivalence of the scales was determined. The internal consistency was acceptable (Cronbach’s a = 0.891 for SWBS and a = 0.798 for RCOPE). The Principal Axis Factor (PAF) analysis with varimax rotation identified two factors comprising 13 items, and one item was excluded from the scale (14/RCOPE). The faith subscale (SWBS) showed similar distributions. Christians engaged in religious activities reported higher SWB in the meaning and peace subscale than patients without religious attendance. In the multivariate analysis, religious Frequency (P &lt; 0.001), and individual spiritual activities (P &lt; 0.003) were significantly related to a greater SWB. Conclusion: The Romanian versions of the SWBS and Brief RCOPE are reliable and valid measures for assessing both the spiritual and religious coping of patients in hospice, their families, and their caregivers. Although faith practices may be beneficial to improve spiritual well-being among Orthodox Christians (the majority in Romania), further research is needed to determine what individual spiritual activities can be supported by Orthodox Christians positively engaged – since they are very skeptical about practices other than religious ones, introduced by the traditional Church."

“The communication I had with him back then is still stuck in my mind.” Bereaved families of cancer patients’ experiences for end-of-life communication

PurposeCommunication with family members is important to end-of-life care for patients with cancer. It is an interactive engagement between terminally-ill cancer patients and their families through which they expand their mutual understanding to cope with losses and find meaning in death. This study aimed to describe the experiences of end-of-life communication between patients with cancer and their family members in South Korea.MethodsThis is a qualitative descriptive study using in-depth semi-structured interviews. Ten bereaved family members with end-of-life communication experience with terminal cancer patients were recruited through purposive sampling. Data were analyzed using qualitative content analysis.ResultsA total of 29 constructed meanings, 11 sub-categories, and the following 3 categories were derived: “Offering a space for patients to reminisce and reflect,” “Building a bond,” and “Reflections on what we need.” End-of-life communication primarily centered on the patients, with families struggling to share their stories with them. Although the families coped well, they also regretted the lack of meaningful communication with the patients, indicating a need for support to facilitate effective end-of-life communication.ConclusionThe study highlighted concrete communication for finding meaning at the end-of-life for cancer patients and their families. We found that the families have the potential to communicate appropriately to cope with the patients’ end-of-life. Nevertheless, end-of-life presents a unique challenge in which families require adequate support. Given the increasing number of patients and families dealing with end-of-life care in hospitals, healthcare providers should be mindful of their needs and help them cope effectively.

Agencies Displayed by Patients, Medical Teams, and Caregivers at the End of Life from the Perspectives of Family Members - A Qualitative Study.

Background: End-of-life (EoL) Care is challenging for terminally-ill patients and their caregivers. This research is aimed to examine the relational agencies of the patients, the caregivers, and the medical teams in the context of EoL care, with a particular emphasis on the caregivers. Methods: This study is based on the qualitative analysis of interviews with 12 individuals who were closely supported a loved one to their death from a terminal illness. Results: Information collected revealed several agency-related themes. Family caregivers are significant entities in managing the 'case' of a seriously ill individual. At the final or more advanced stages of the EoL process, caregivers gradually shift from a supportive role to being active agents, but not always backed by the necessary experience, knowledge, or the requisite emotional resilience. Conclusions: Based on recognizing their agentic proactivity, a clear and elaborate articulation of the family caregivers' roles is needed.

The Effect of Dignity Therapy on Terminally-Ill Adult Patients: A Systematic Review and Meta-Analysis.

We aimed to evaluate the effect of dignity therapy on the dignity, distress, and quality of life of terminally-ill adult patients. All randomized controlled trials published prior to Jan 2021 were searched through database, including PubMed, Medline, OVID, Cochrane Library, CINAHL, Web of Science, Scopus, ProQuest Central, KMBASE, KoreaMed, NDSL, and RISS. The RoB 2 was used to assess risk of bias. Effect sizes, Hedge's g and Higgins I 2 -statistics were used for meta-analysis. We finally identified 10 studies for a systematic review, and eight studies out of them were selected for a meta-analysis. Overall, 776 participants were included in the meta-analysis. There were significant differences between with and without dignity therapy groups in dignity and anxiety (SMD = -0.3805, Cl = -0.5606, -0.2004; SMD = -0.1932, Cl = -0.3774, -0.0090, respectively) while there was no significant difference in quality of life and depression (SMD=0.4678, Cl = -0.0989, 1.0345; SMD= -0.0513, Cl= -0.2461, 0.1434, respectively). Dignity therapy may be effective for terminally ill patients on dignity and anxiety. We suggested further empirical studies with dignity therapy and repetitive meta-analysis in the future due to heterogeneity of the studies.

NURSING HOME STAFF’S PERCEPTIONS AND EXPERIENCES COLLABORATING WITH HOSPICE

Abstract Hospice has been associated with improved outcomes for terminally-ill patients and families, including in pain management, care satisfaction, and rates of hospitalizations. In 2016, 1/3 of Medicare hospice beneficiaries died in nursing homes (NH). The responsibilities for meeting the needs of the NH resident receiving hospice are shared by the NH staff and hospice team, making good communication and coordination of services between providers critical to the successful delivery of services. This exploratory study surveyed NH direct care and administrative staff about their perceptions of hospice, and barriers to collaboration. A total of 66 NH staff completed the online survey. The sample was 62.1% direct care staff (e.g., social work, nursing) and 37.8% administrators, predominately female (75%), non-Hispanic-white (43.9%), and employed full-time (87.8%). Over half of the NHs were non-profit organizations (56.1%). Respondents had on average 33.8 hours of hospice education and held positive hospice attitudes, with 76% strongly agreeing that hospice should be an option regardless of setting, and 87.8% believing they could collaborate with hospice toward the goal of a “good death.” Although participants cited barriers to hospice related to COVID-19, this was not associated with overall hospice attitudes. Respondents cited resistance from family as the primary barrier to hospice, indicating lack of knowledge and a need for family education. They also cited concerns surrounding duplication of roles. Family members in previous studies have identified care allocation as a challenge, based on expectations that hospice would bring additional contact/services instead of replacing NH services. Implications will be discussed.

Death and Dying Through the Lens of Jordanian Muslim Patients and Caregivers.

The current phenomenological-qualitative study explored the meaning of death and dying from a Jordanian-Muslim perspective. Data were collected through face-to-face interviews with eight patients and five family caregivers, then analyzed following the Braun and Clarke steps. The analysis revealed two main themes; confronting death and preparing for a good death. The experience of terminal illness compelled the patients and their family caregivers to think of imminent death and want to prepare for it. On the other hand, Muslim terminally-ill patients accepted death and surrendered to God's decree; however, they feared the unknown of the dying experience. Furthermore, the patients were concerned about being a burden to their families during the last days of their lives. Additionally, Muslim patients and caregivers identified five components of a 'good death' from the Arab-Muslims' perspectives, including having a good closure, dying with dignity, coming to peace, not dying alone, and having a religious engagement.

Perspectives of a “Good Death” among Patients who have Recovered from Severe COVID-19, Immediate Family Members of Patients who have Died from COVID-19, and Health Care Providers who Took Care of Patients who have Died from COVID-19 in a Tertiary Hospital

Background. The premise of a “good death” is vital in delivering proper care of terminally-ill patients but the COVID-19 pandemic has brought about new challenges and necessary protocols. There is a need to explore this gap in knowledge and understand perspectives of various stakeholders in COVID-19-related deaths.Objectives. To describe the perception, barriers, and facilitators of a “good death” from COVID-19 survivors, relatives, and healthcare providers in the setting of a COVID-19 tertiary hospital.Methods. The study was done in a COVID-19 tertiary hospital in Metro Manila from September to December 2021. Three groups of target respondents were invited to participate in the study: 8 survivors of severe/critical COVID-19, 9 close relatives of COVID-19 patients who had died, and 9 healthcare providers who directly cared for COVID-19 patients who had died. Semi-structured in-depth interviews were conducted by video calls which explored themes on good death. Thematic analysis was also done.Results. A total of 26 respondents were included in the study: 8 COVID-19 survivors, 9 relatives, and 9 healthcare providers. The definition of “Good Death” among the participants focused on "being at peace" and having "everything in order". The experience with COVID-19 were influenced by the fear of the infection and isolation restrictions during hospitalization. Recurring themes across all groups were the fear of COVID-19 and death, importance of family in the healthcare process, difficulty in communication, and cremation viewed as necessary but not preferred.Conclusion. A "good death" is perceived as a peaceful, prepared experience. The main barriers of a "good death' were the strict restrictions on physically comforting and communicating with patients. Video/voice calls and compassionate health care providers facilitated a better hospitalization experience. Careful study and focus on these factors can improve interventions for terminally ill patients to achieve a “good death” in the Filipino socio-cultural context.

Drug Choice for Hyperactive Delirium in Terminally-Ill Cancer Patients: A Nationwide Survey

Delirium is a prevalent neuropsychiatric condition in patients with cancer that increases in patients prior to death. 1 Lawlor PG Gagnon B Mancini IL et al. Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med. 2000; 160: 786-794 Crossref PubMed Scopus (598) Google Scholar Delirium is a distressing symptom for patients with cancer, caregivers, and medical staff. 2 Bush SH Lawlor PG Ryan K et al. Delirium in adult cancer patients: ESMO Clinical Practice Guidelines. Ann Oncol. 2018; 29: iv143-iv165 Abstract Full Text Full Text PDF Scopus (66) Google Scholar Therefore, the management of delirium would lead to an improvement in the quality of life of cancer patients and their caregivers.

IN HOSPITALIZED PATIENTS WITH IMPLANTABLE CARDIOVERTER DEFIBRILLATORS: DOCUMENTED CODE STATUS DISCUSSIONS INFREQUENTLY REFERENCE THE IMPLANTABLE CARDIOVERTER-DEFIBRILLATOR (ICD) DEVICE

IN HOSPITALIZED PATIENTS WITH IMPLANTABLE CARDIOVERTER DEFIBRILLATORS: DOCUMENTED CODE STATUS DISCUSSIONS INFREQUENTLY REFERENCE THE IMPLANTABLE CARDIOVERTER-DEFIBRILLATOR (ICD) DEVICE

Prognostication of the Last Days of Life.

Accurate prediction of impending death (i.e., last few days of life) is essential for terminally-ill cancer patients and their families. International guidelines state that clinicians should identify patients with impending death, communicate the prognosis with patients and families, help them with their end-of-life decision-making, and provide sufficient symptom palliation. Over the past decade, several national and international studies have been conducted that systematically investigated signs and symptoms of impending death as well as how to communicate such a prognosis effectively with patients and families. In this article, we summarize the current evidence on prognostication and communication regarding the last days of life of patients with cancer, and future directions of clinical research.

The Psychosocial and Economic Effects of Caring for Terminally Ill Patients: The Case of Hospice Africa Uganda

Introduction Giving care to a patient at the end-of-life can be a challenging experience. The responsibilities of caregiving may include executing complex physical and mental tasks, financial planning, patient care, decision-making, emotional support and coordination of care. This mixed-methods observational study aims to identify the psychosocial and economic effects of caregiving for terminally-ill patients by carers on the Hospice Africa Uganda Kampala program. It used both quantitative and qualitative data of caregivers caring for terminally-ill patients attending Hospice Africa Uganda Kampala. Simple random sampling was conducted to select caregivers who were invited to participate in the study. Results Results indicate that the majority of patients who were receiving palliative care (60.9%, 103) had been diagnosed with cancer. Most participants (62%, n=105) had spent less than one year caring for their patients, while (18%, n=31) were cared for between 1-5 years. Our results show that the responsibility of caregiving has significant effects on the psychosocial well-being of caretakers. In particular, it reduced the amount of time they spent attending social gatherings and caring for their children, their religious commitment (p&lt;0.05), as well as their level of fatigue and exhaustion (p&lt;0.05), and negatively impacted job finding activities. Conclusion Terminal caregiving has significant effects on the psychosocial well-being and incomes of caretakers, and their ability to find a job alongside caring for the patient. Based on these findings, it is therefore recommended that caregivers be given ongoing support to help them provide care to their own family members and patients with life limiting illnesses early in the disease trajectory.

Operationalizing legal rights in end-of- life decision-making: A qualitative study

Background: For a patient’s legal right to make end-of-life treatment decisions to be respected, health care practitioners, patients and their substitute decision-makers must know what rights exist and how to assert them (or support others to assert them). Yet very little is known about what enhances or obstructs the operationalization of legal rights from the perspective of patients, family members and substitute decision-makers. Aim: To explore barriers and facilitators to the operationalization of rights in end-of-life decision-making from the perspectives of terminally-ill patients and family members and substitute decision-makers of terminally ill patients in Australia. Design: Semi-structured interviews (face to face and telephone) with patients, family or substitute decision-makers experienced in end-of-life decision-making completed between November 2016 and October 2017. A thematic content analysis of interview transcripts. Setting/participants: Purposive sampling across three Australian states provided 16 terminally-ill patients and 33 family and/or substitute decision-makers. Results: Barriers and facilitators emerged across three overlapping domains: systemic factors; individual factors, influenced by personal characteristics and decision-making approach; and communication and information. Health care practitioners play a key role in either supporting or excluding patients, family and substitute decision-makers in decision-making. Conclusion: In addition to enhancing legal literacy of community members and health practitioners about end-of-life decision-making, support such as open communication, advocacy and help with engaging with advanced care planning is needed to facilitate people operationalizing their legal rights, powers and duties. Palliative care and other support services should be more widely available to people both within and outside health systems.

The Shift of Dignity in Terminally Ill Patients

Objectives: When the illness becomes acute, the patient will be burdened physically and psychosocially. Three factors could affect their dignity: illness-related dignity, dignity conserving repertoire, and social dignity inventory. This research aims to describe the dignity shifting experiences of the terminally-ill patients based on their families’ opinions. If the health care workers aware and realize this shifting, it will help them to give care for the terminal ill patients. Methods: This research was a phenomenological study as a part of bigger study carried out in a Catholic hospital in Indonesia. The subjects for this research were the families of terminally ill patients. They were interviewed to know what kind of shifting happened in their families’ members. Result: Being sick and hospitalized was a shift of dignity. According to the families interviewed, being patients in the hospital everybody that they knew was visiting and watching them laying on the bed. Patients expressed their feelings that they were “such a performer”; not strong enough and ready to welcome guests because of the condition, or they felt not comfortable and always wanted to go home. Other patient felt that she was very dependent and not used to be served by nurses in a hospital. The patient was strong before, but during the illness, she became and was so weak. In another case, one patient somehow kept her dignity by telling her sister to continue running the business. Every day she told her sister to do the job properly, like a business as usual, as if she did not want to loose her dignity. Conclusions: There are various stages and shifting happening during the illness. Some patients felt that the illness weaken their physical body and social relations. Some others tried to conserve their mental condition after the illness. The healthcare workers should be aware, paid attention and be trained to this dignity shifting. The care needs to be adapted and given considerably according to the patients.

Developing an integrated model of community-based palliative care into the primary health care (PHC) for terminally ill cancer patients in Iran

BackgroundPatients with cancer commonly experience pain and suffering at the end of life days. Community-based palliative care can improve the quality of life of terminally-ill cancer patients and provide them with a merciful death. The purpose of this study was to develop an integrated model of community-based palliative care into PHC for terminally ill cancer patients.MethodThis study is a health system research (HSR) that was conducted in three phases from October 2016 to July 2020. In the first phase, dimensions of community-based palliative care were explored in patients with cancer using qualitative methods and conventional content analysis. In the second phase, a scoping review was carried out to complete the collected data from the qualitative phase of the study. Based on the collected data in the first and second phases of the study, a preliminary draft of community-based palliative care was developed for patients with cancer based on the framework of the World Health Organization. Finally, the developed model was validated using the Delphi technique in the third phase of the study.ResultsData analysis indicated that providing community-based care to patients with cancer is influenced by the context of care. According to the developed model, patients are identified as terminally ill, and then are referred to the local comprehensive health center in a reverse manner. After patients’ referral, they can receive appropriate healthcare until death by the home care team in relation to the comprehensive health center based on the framework of primary healthcare.ConclusionsThis model was developed based on the current Iranian healthcare structure and the needs of terminally ill cancer patients. According to the model, healthcare is provided in a reverse manner from the subspecialty centers to patients’ homes in order to provide easy access to palliative care. It is suggested to use this model as a pilot at the regional level.

Repeated filling of elastomeric infuser pumps for home-based subcutaneous medications: a case series.

Several medical devices have been developed for continuous subcutaneous drug infusion for home palliative care (HPC), such as elastomeric infuser pumps (EIP). There is no evidence on the repeated filling of EIP for continuous subcutaneous delivery for HPC. A clinical case series report of terminally-ill patients cared for in HPC, with repeated filling of EIPs for home-based subcutaneous medications. A retrospective analysis of each patient's EIP-related entries in an anonymised database regarding: 1) EIP general functioning aspects; 2) clinical aspects: symptom control and local skin complications. Overall and per-patient cost-saving was also calculated. A total of 10 cases were analysed (four 50-hour EIP and six 30-hour EIP). All EIPs had a mean number of refillings (standard deviation (SD), mode) of 1.6 ((0.5), 2); with 3.2 drugs on average used in each EIP ((1.4), 4). Approximate total mean (SD) usage time for both types of EIP was 87 (29) hours; and all EIP were used, on average (SD), 49 (23) hours more than its labelled duration. All EIPs showed a complete reservoir deflation between refilling. Only one patient had a minor skin complication and no symptom aggravation was observed, except for two cases with mild anxiety and agitation. Cost-saving analysis for the complete case series showed that EIP refillings saved, on average, €24 per-patient and a total of nearly €240, for both types of infuser pumps. This preliminary study suggests that refilling is safe and reduces cost. Future research on EIP refilling using controlled and systematic methodologies are warranted.