Palliative Symptom Management Research Articles

A narrative review of supportive and end of life care considerations in advanced hepatocellular carcinoma.

Hepatocellular carcinoma (HCC) remains a leading cause of cancerrelated deaths, and case numbers continue to rise in the United States. HCC carries a poor prognosis, and management requires a multidisciplinary approach. This narrative review aims to identify opportunities for further integration of palliative care (PC) in HCC care. Given the high symptom burden faced by patients with HCC, early PC consultation can be beneficial for patients. A search of PubMed was conducted from inception of the database to March 1, 2023. The search was composed of keywords and controlled vocabulary terms for concepts related to palliative medicine and symptom management in the setting of HCC. This narrative review finds that although PC has been integrated into HCC guidelines, partnerships between PC and hepatology are still nascent in clinical practice. Treatment-related barriers pose a challenge to timely integration of PC in the care of HCC patients; evaluation or listing for transplantation can be perceived as a barrier to PC consultation, and unpredictable clinical courses make prognostication challenging. Providers may hesitate to pursue PC referral due to a lack of consensus around the role of PC, and for those that are referred, timing of consultation remains an issue especially for those who are potential liver transplant candidates. There are few studies of PC in HCC, limiting evidence-based recommendations that can be made regarding PC involvement in this patient population. While PC is not routinely integrated into HCC care, recent guideline recommendations and a growing number of studies may change this over time. Although further evidence is needed, PC and hepatology teams partnering together can explore ways to improve the care of this patient population. PC consultation early in HCC care could assist in management of symptom relief, psychosocial and spiritual support, and caregiver support. Effective communication will be required to set parameters for referral and clarify potential outcomes of consultation. Teams should be prepared for the challenges involved in a culture change and paradigm shift in clinical practice.

Wearable devices in palliative care for people 65 years and older: A scoping review.

The objective of this scoping review is to map existing evidence on the use of wearable devices in palliative care for older people. The databases searched included MEDLINE (via Ovid), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Google Scholar, which was included to capture grey literature. Databases were searched in the English language, without date restrictions. Reviewed results included studies and reviews involving patients aged 65 years or older who were active users of non-invasive wearable devices in the context of palliative care, with no limitations on gender or medical condition. The review followed the Joanna Briggs Institute's comprehensive and systematic guidelines for conducting scoping reviews. Of the 1,520 reports identified through searching the databases, reference lists, and citations, six reports met our inclusion criteria. The types of wearable devices discussed in these reports were accelerometers and actigraph units. Wearable devices were found to be useful in various health conditions, as the patient monitoring data enabled treatment adjustments. The results are mapped in tables as well as a Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) chart. The findings indicate limited and sparse evidence for the population group of patients aged 65 years and older in the palliative context. Hence, more research on this particular age group is needed. The available evidence shows the benefits of wearable device use in enabling patient-centred palliative care, treatment adjustments and symptom management, and reducing the need for patients to travel to clinics while maintaining communication with healthcare professionals.

Palliative Care for Symptomatic Heart Failure: A New Paradigm

The nation’s largest, fastest growing, and costliest patient population are those living with symptomatic heart failure (HF). Patients with HF live, on average, for 5 years. Preventing the escalation of symptoms or an exacerbation is key when optimizing patient quality of life. Earlier integration of palliative symptom management can reduce exacerbation, prevent debility, maintain physical functioning, improve costly hospitalization, and improve patient quality of life. The current trends in policy and practice provide an important paradigm for the nurse practitioner when effectively managing the patient with HF.

Update on the palliative care approach at the pediatric intensive care unit.

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.

„Mir ist der Appetit vergangen“: Umgang mit Todeswünschen und freiwilligem Verzicht auf Essen und Trinken

A notable percentage of patients with a life-limiting disease express a wish to die. These wishes should be discussed and dealt with in a structured manner. This includes providing patients with information regarding existing possibilities in palliative symptom management, information about suicide prevention, a psychiatric examination to determine the possibility of depression and the capacity to consent and, if desired, social, spiritual and psychological counselling. Nonetheless, a patient’s wish to die may persist. One way in which a patient may end their life is by voluntarily choosing to stop eating and drinking (VSED). However, this process may cause an enormous burden of symptoms on the patient, such as thirst and delirium. Therefore, VSED should only be performed if palliatively trained medical teams are available. It is important to note that team members may experience moral distress while accompanying a patient in this process. To protect them, team members should attend a discussion with a trained ethics committee and engage in repeated case discussions within the team itself. In addition, case supervision should take place to strengthen resilience in the team.

Necessity Is the Mother of Implementation: Patient Satisfaction with Telemedicine for Palliative Care During the COVID-19 Pandemic

Outcomes1. Assess patient satisfaction with telemedicine for outpatient palliative care2. Quantify time and resources saved by telemedicine3. Examine patient demographic data and how they correlate to patient satisfaction with telehealth for outpatient palliative careBackgroundCurrent literature on telemedicine use for palliative medicine focuses primarily on the accessibility of virtual health platforms. Information about patients’ attitudes toward using this medium is limited. Telemedicine expansion during the COVID-19 pandemic provided an opportunity to fill this knowledge gap.Aim StatementThe aim of this article is to appraise the value of telemedicine for palliative outpatient care and help guide policy regarding telehealth implementation and expansion.MethodsData are presented from a cross-sectional qualitative survey conducted via telephone of 51 patients who participated in 199 telemedicine visits (mean 3.9 visits per patient) from March through December 2020 during the COVID-19 pandemic. Appointments were for established patients at both a large academic palliative clinic and a safety-net, palliative clinic. Questions measured patient satisfaction with healthcare delivery modes, barriers to care, and technological preparedness.ResultsPrimary: All patients (100%) were either “extremely” or “somewhat” satisfied with their symptom management conducted via telemedicine. A majority of patients (65%) preferred a hybrid model with both telemedicine and in-person visits, and 14% preferred all follow-up via telehealth. Secondary: Telemedicine appointments required less time, travel, and family resources. Combined wait and appointment time for virtual visits was less than 30 minutes for 74% of patients, compared with 65% of patients spending 1 hour or more on in-person clinic days. Over half (56%) of support persons missed work to attend visits. No difference in satisfaction was detected when data were stratified by English language proficiency, internet access, and education level.Conclusions and ImplicationsPatient satisfaction with telemedicine for palliative symptom management was similar to that for in-person clinic visits. Study was limited by selection bias; 28.42% of patients had died, 40.53% were unreachable. A larger study is needed. Telemedicine is advantageous, and preliminary data support its use.

Assessing comprehensive care deficits in United States (U.S.) ovarian cancer programs to inform quality improvement initiatives.

256 Background: Ovarian cancer is the leading cause of gynecologic cancer mortality in the US. Given the high burden of disease and complexities in the provision of quality care, a multidisciplinary team approach is critical to optimal care delivery. In 2019, the Association of Community Cancer Centers (ACCC) launched a multiphase, stakeholder-driven initiative to improve care for this patient population. Results of a national survey of cancer programs to identify the needs of patients are reported here. Methods: A 20 question survey was developed by an expert steering committee including gynecologic oncologists, pathologists, genetic counselors, a nurse navigator, and cancer center administrators. The instrument was designed to collect data about cancer programs, key ovarian cancer patient needs, and barriers to and opportunities for improving ovarian cancer care. The online survey was open for participation for 4 weeks using the Qualtrics platform and distributed via email to ACCC and Society of Gynecologic Oncology members. Results: We received 26 total responses from Comprehensive Community (26%), NCI-Designed Comprehensive (22%), Academic Comprehensive (22%), and Integrated Network (13%) Cancer Programs. Annual ovarian cancer cases ranged from 22 to 190 (median: 50.5). 85% of programs has a multidisciplinary team for ovarian cancer and 61% were part of a referral network. On average, programs has 1.5 phase II and 2 phase III clinical trials currently available for ovarian cancer (all programs had at least 1 trial available). Palliative care and comprehensive symptom management was integrated into the first appointment (15%), integrated at the time of recurrence (4%), and most frequently, available by consult (81%). We assessed genetic testing practices at each program. Aggregated across programs, 79% of patients received germline multipanel testing, 71% germline BRCA only, 50% somatic multigene, and 51% somatic BRCA only. The frequency of consultations included: genetic counseling (75%), nurse navigation (75%), social work (50%), dietetics (40%), financial counseling (25%). Genetic evaluations were typically ordered by Gynecologic Oncology (88%), genetic counseling (4%), or both (8%). When asked what topic they would choose for a quality improvement project, genetic testing and counseling was the most frequent choice (46%), followed by clinical trials enrollment and availability (23%), multidisciplinary team care (19%), education on best practices (15%), palliative care (15%), and ancillary services (15%). Conclusions: Multidisciplinary care for ovarian cancer was common across a range of cancer programs but integration of palliative care, social work, dietetics, and financial counseling could be improved. Expanding clinical trials and genetic testing and counseling were the most frequently identified opportunities to improve ovarian cancer care.

Interventions for palliative symptom control in COVID-19 patients.

Interventions for palliative symptom control in COVID-19 patients.

Synchronous bilateral Wilms\u2019 tumor with liver metastasis

BackgroundWilms’ tumor (nephroblastoma) is mostly unilateral; however, bilateral Wilms’ tumors are seen in about 5–8% of patients. This can be synchronous or metachronous. It is uncommon to get liver metastasis from bilateral Wilms’ tumor.Case presentationAn 8-year-old male Ugandan presented with a history of abdominal swelling and flank pains for 1 year. There was no history of hematuria. Both ultrasound and computed tomography of the abdomen demonstrated multiple solid lesions in both kidneys and a huge solid mass in segments V, VI, VII and VIII of the liver. Histological examination of renal biopsy specimen was favorable for chemotherapeutic regimens. However, following a multidisciplinary tumor board consensus, a nephron-sparing surgery was deemed unsuitable, and he was managed conservatively with chemotherapy (adriamycin and vincristine) with a palliative intent.ConclusionsMetastatic bilateral Wilms’ tumor has a particularly poor prognosis. There are no clear evidence-based guidelines for the management of this rare presentation. This patient benefited from early palliative care and symptom management.

Extending the Depth and Breadth of Physiatry Care: Five Strategies for Residents to Develop a Foundation in Hospice and Palliative Medicine.

Hospice and palliative medicine is one of seven accredited fellowship subspecialties available to graduates of physical medicine and rehabilitation residency programs. Hospice and palliative medicine and physical medicine and rehabilitation share many of the same principles and practices, and physical medicine and rehabilitation residency training can be excellent preparation for hospice and palliative medicine fellowship. However, unlike the other six physical medicine and rehabilitation subspecialties, there is currently no requirement for hospice and palliative medicine training during physical medicine and rehabilitation residency. As a result, physical medicine and rehabilitation residents may encounter limited hospice and palliative medicine exposure or education, and lack explicit opportunities to develop the basic set of palliative care symptom management and communication tools that can be applied across the spectrum of physiatry care. Here, we provide five strategies that residents can use within their own programs to develop knowledge and experience in hospice and palliative medicine.

Feasibility of a multimodal exercise, nutrition, and palliative care intervention in advanced lung cancer

BackgroundAdvanced lung cancer patients face significant physical and psychological burden leading to reduced physical function and quality of life. Separately, physical activity, nutrition, and palliative symptom management interventions have been shown to improve functioning in this population, however no study has combined all three in a multimodal intervention. Therefore, we assessed the feasibility of a multimodal physical activity, nutrition, and palliative symptom management intervention in advanced lung cancer.MethodsParticipants received an individually tailored 12-week intervention featuring in-person group-based exercise classes, at-home physical activity prescription, behaviour change education, and nutrition and palliative care consultations. Patients reported symptom burden, energy, and fatigue before and after each class. At baseline and post-intervention, symptom burden, quality of life, fatigue, physical activity, dietary intake, and physical function were assessed. Post-intervention interviews examined participant perspectives.ResultsThe multimodal program was feasible, with 44% (10/23) recruitment, 75% (75/100) class attendance, 89% (8/9) nutrition and palliative consult attendance, and 85% (17/20) assessment completion. Of ten participants, 70% (7/10) completed the post-intervention follow-up. Participants perceived the intervention as feasible and valuable. Physical activity, symptom burden, and quality of life were maintained, while tiredness decreased significantly. Exercise classes prompted acute clinically meaningful reductions in fatigue, tiredness, depression, pain, and increases in energy and well-being.ConclusionA multimodal physical activity, nutrition, and palliative symptom management intervention is feasible and shows potential benefits on quality of life that warrant further investigation in a larger cohort trial.Trial registrationNCT04575831, Registered 05 October 2020 – Retrospectively registered.

Effect of educational intervention on nurses knowledge about palliative care: Quasi-experimental study

The aim of the study was to determine the level of knowledge of registered nurses about palliative care and to determine the effect of educational intervention on this level of knowledge in Turkey. The study was a quasi-experimental study and consists of 136 nurses. The study was conducted between April and June 2019 in a university hospital in Malatya, Turkey. Nurse are educated on the definition, history, and philosophy of palliative care, the responsibilities of palliative care nurses, symptom management, and end of life care. The education was applied in five sessions. Each session took approximately 40 min and sessions were conducted once a week. Data were collected before and after the education via nurse identification form developed by the research team and the Palliative Care Knowledge Test. It was determined that the nurses received 8.9 ± 1.1 out of 20 points before and 17.5 ± 1.9 points after the education. There was a statistically significant difference between the mean scores of nurses before and after training (p < 0.001). It was found that educational intervention has a large effect (Cohen's d = 5.540) on nurses' knowledge about palliative care. It was determined that educational intervention was an effective way to improve nurses' knowledge about palliative care.

Characteristics of gastrointestinal metastasis in lung cancer: Single-center experience from Eastern India

Background: Lung cancer is one of the most common cancers associated with a poor prognosis. Gastrointestinal (GI) metastasis among lung cancer patients is often misdiagnosed or missed as a diagnosis. With a paucity of literature on this theme, we conducted a study to understand the clinicopathological characteristics of GI metastasis in lung cancer patients. Materials and Methods: A retrospective review of 793 primary lung cancer patients registered from January 2018 to December 2018 was done at a tertiary cancer hospital. The present study focused on lung cancer patients with an objective to find out the cases of GI metastasis. GI metastasis was confirmed on radiological imaging in the records and positron emission tomography, magnetic resonance imaging, or computed tomography scans. Quantitative variables were either expressed in terms of mean and standard deviation or categorized and expressed in percentages. Pearson's correlation coefficient was used to find the correlation between different symptom clusters in patients with GI metastasis in lung cancer. Results: Of the 793 lung cancer patients, 31 (3.9%) patients had metastasis to the GI tract, with as high as 70.97% (22/31) patients presenting with peritoneal/omental deposits. Of the 31 patients with GI metastasis, five (16.13%) patients were symptomatic, four patients had intestinal obstruction, and one had intestinal perforation. Due to advanced metastatic cancer and poor performance status, patients were provided palliative care and symptom management as they were deemed unfit for surgical intervention. Conclusion: With the advent of targeted and immunological therapies, patients with metastatic lung cancers are surviving longer. Palliative care specialists must work in close collaboration with oncologists to identify an impending GI complication at an early stage to direct specific interventions to avert the complication.

Perioperative Symptoms: A New Frontier for Surgical Palliative Care.

Perioperative Symptoms: A New Frontier for Surgical Palliative Care.

The Use of Virtual Reality Technologies in the Treatment of Duchenne Muscular Dystrophy: Systematic Review.

BackgroundDuchenne muscular dystrophy is a serious and progressive disease affecting one in 3500-6000 live male births. The use of new virtual reality technologies has revolutionized the world of youth rehabilitation.ObjectiveWe performed a systematic review to study the effectiveness of the use of virtual reality systems applied in the rehabilitation of the upper limbs of individuals with Duchenne muscular dystrophy.MethodsBetween June 2018 and September 2019, we carried out a series of searches in 5 scientific databases: (1) PubMed, (2) Web of Science, (3) Scopus, (4) The Cochrane Library, and (5) MEDLINE via EBSCO. Two evaluators independently conducted the searches following the PRISMA recommendations for systematic reviews for articles. Two independent evaluators collated the results. Article quality was determined using the PEDro scale.ResultsA total of 7 clinical trials were included in the final review. These studies used new technologies as tools for physiotherapeutic rehabilitation of the upper limbs of patients with Duchenne muscular dystrophy. Collectively, the studies showed improvement in functionality, quality of life, and motivation with the use of virtual reality technologies in the rehabilitation of upper limbs of individuals with Duchenne muscular dystrophy.ConclusionsThe treatment of neuromuscular diseases has changed in recent years, from palliative symptom management to preventive methods for capacity building. The use of virtual reality is beginning to be necessary in the treatment of progressive diseases involving movement difficulties, as it provides freedom and facilitates the improvement of results in capacity training. Given that new technologies are increasingly accessible, rehabilitation and physiotherapy programs can use these technologies more frequently, and virtual reality environments can be used to improve task performance, which is essential for people with disabilities. Ultimately, virtual reality can be a great tool for physiotherapy and can be used for Duchenne muscular dystrophy rehabilitation programs to improve patient performance during training.Trial RegistrationPROSPERO International Prospective Register of Systematic Reviews CRD42018102548; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=102548

Use of cannabis and cannabinoids in palliative care setting.

Cannabis products have been used for various ailments since ancient times. But their use diminished in the medical community due to the legal and social concerns of substance abuse. With evolving evidence of their use in alleviating various symptoms, resurgence of interest in their medicinal use is seen in the past decade. Clinical evidence for cannabis products in treating various ailments has been far from robust. Their use is based on anecdotal and low-quality evidence. This review attempts to revisit the recent medical literature available on the merits and demerits of cannabinoid use in palliative medicine. A few symptoms in palliative care setting can be difficult to treat in a few patients with the available treatment measures. Anecdotal reports and early clinical data have proved cannabinoids to be a promising pharmacological option in managing this subset of patients. However, absence of robust clinical data in proving that cannabinoids have definitely favorable risk-benefit ratio, precludes the inclusion of cannabinoids in the routine recommendation for palliative symptom management. Before cannabinoids enter the broader market with patient-driven and industry-driven hype, high-quality clinical evidence is emergently needed.

The Core Information Tools for Palliative Care Symptom Management in Patients with Cancer

The Core Information Tools for Palliative Care Symptom Management in Patients with Cancer

Battling Cancer or Fighting for Quality of Life? Role Theory and Patient Expectations in Cancer Care

Background: Military metaphors have long dominated the cancer discourse in America, and patients are expected to be willing to endure anything in order to “fight” and “battle” cancer. In recent years, however, cancer care has expanded in response to a need to better holistically support patients as they undergo treatment. Patients are increasingly referred to psychology, nutrition, and palliative care for co-management. Coupled with the movement in healthcare to engage patients in their care and to provide care that is more “centered” to the patient, these shifts have the potential to radically transform patient experiences of cancer care. However, it is unclear how cancer patients currently view their own roles as well as those of their growing healthcare team. Objective: Using role theory, we sought to identify patients’ and caregivers’ current approaches to patient and healthcare provider roles, in the context of an outpatient cancer care with palliative care. Methods: A qualitative interview study was designed to investigate the perspectives, attitudes, and experiences of patients and caregivers surrounding cancer care, specifically with palliative care and symptom management. Thirty-one interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Following a grounded theory approach, we iteratively analyzed our data to develop a typology of approaches. Findings: Patients and caregivers conveyed three approaches to expectations and roles in the context of their cancer care experience. The conventional approach saw fighting cancer as the top priority, and oncologists as the most important healthcare professional. In contrast, the unconventional approach rejected this traditional view and placed more value on aspects of life and care that were outside of their cancer diagnosis; participants with this approach often described instances in which oncologists dismissed critical components of their care. Finally, the ambivalent approach acknowledged gaps in current oncology care, but participants with this approach were quick to defend their oncologist and justify these oversights. Conclusion: Our study showed that patients with cancer are actively shaping the expectations and roles they ascribe to themselves and to their healthcare providers. Interestingly, however, some patients seemed content with a more traditional, paternalistic approach while others described some resistance when trying to advocate for their values and desired illness experiences.

Nausea and Vomiting Not Related to Cancer Therapy: Intractable Problem or Clinical Challenge?

PurposeUnlike therapy-related nausea and vomiting (chemotherapy or radiotherapy induced), nausea and vomiting (N/V) in patients with advanced cancer is often multicausal and thus presents unique challenges. Few professional guidelines address the palliative management of N/V, and those that do are insufficiently detailed to bolster clinical decision-making. Nonetheless, oncology advanced practitioners (APs) are frequently challenged to manage these high-impact symptoms. This requires collaborating with other oncology care providers and cultivating a knowledge base to educate and mentor professional colleagues to optimize N/V unrelated to treatment.MethodsLiterature reviewed included current and classic articles that address the physiologic bases of N/V related to disease and with malignant bowel obstruction, agents used to alleviate nausea or N/V, and nonpharmacologic adjunctive measures. This information was framed within palliative care and symptom management clinical experience.ResultsThis review article summarizes what is known about the neuropharmacology of N/V in advanced disease. Focused assessment, pharmacologic agents (antiemetics, central neuromodulators, and peripheral prokinetic agents), and nondrug adjunctive measures that may be useful for N/V are included.ConclusionsManaging N/V in advanced cancer is a quality-of-life imperative that requires persistence and interprofessional collaboration among oncology APs and other clinicians to personalize management. This work can change the perception that N/V related to progressive disease is frequently intractable to one that considers it as a manageable clinical challenge.

International COVID-19 Palliative Care Guidance for Nursing Homes Leaves Key Themes Unaddressed

COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care–related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.