OBJECTIVES: Psychosocial interventions that mitigate psychosocial distress in cancer patients are important. The primary aim of this study was to examine the feasibility and acceptability of an adaptation of the Mindful Self-Compassion (MSC) program among adult cancer patients. A secondary aim was to examine pre-post-program changes in psychosocial wellbeing.
METHOD: The research design was a feasibility and acceptability study, with an examination of pre- to post-intervention changes in psychosocial measures. A study information pack was posted to 173 adult cancer patients 6 months-5 years post-diagnosis, with an invitation to attend an eight-week group-based adaptation of the MSC program.
RESULTS: Thirty-two (19%) consented to the program, with 30 commencing. Twenty-seven completed the program (mean age: 62.93 years, SD 14.04; 17 [63%] female), attending a mean 6.93 (SD 1.11) group sessions. There were no significant differences in medico-demographic factors between program-completers and those who did not consent. However, there was a trend toward shorter time since diagnosis in the program-completers group. Program-completers rated the program highly regarding content, relevance to the concerns of cancer patients, and the likelihood of recommending the program to other cancer patients. Sixty-three percent perceived that their mental wellbeing had improved from pre- to post-program; none perceived a deterioration in mental wellbeing. Small-to-medium effects were observed for depressive symptoms, fear of cancer recurrence, stress, loneliness, body image satisfaction, mindfulness, and self-compassion.
SIGNIFICANCE OF RESULTS: The MSC program appears feasible and acceptable to adults diagnosed with non-advanced cancer. The preliminary estimates of effect sizes in this sample suggest that participation in the program was associated with improvements in psychosocial wellbeing. Collectively, these findings suggest that there may be value in conducting an adequately powered randomized controlled trial to determine the efficacy of the MSC program in enhancing the psychosocial wellbeing of cancer patients.
Background: People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity.
Aim: To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care.
Design: Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to =8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death =6, 5–3 and 2–0 months). Linear mixed models were calculated.
Setting/participants: A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included.
Results: In prospective analyses, quality of life, functioning and symptoms–except nausea/vomiting–remained generally stable over time. In retrospective analyses, patients 2–0 months before death reported significantly lower quality of life and physical functioning scores than those 5–3 months before death, who in turn scored lower than those =6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5–3 to 2–0 months before death. Nausea/vomiting only increased when comparing those =6 months before death with those 2–0 months before death.
Conclusion: While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.
INTRODUCTION: Positive pressure ventilation (PPV) with T-Piece and self-inflating bag (SIB) during neonatal resuscitation after birth is associated with variability in ventilation. The use of a ventilator with respiratory function monitoring (RFM) for PPV, however, has not been evaluated.
OBJECTIVE: To determine if ventilator + RFM can reduce ventilation variability compared to T-Piece and SIB in a preterm manikin at different combinations of target tidal volume (VT) and lung compliance (CL).
METHODS: Twenty clinicians provided PPV via mask and endotracheal tube (ETT) using SIB, T-Piece, T-Piece + RFM and Ventilator + RFM to a manikin with adjustable lung CL. Three combinations of CL and target VT: Low CL-Low VT, Low CL-High VT and High CL-Low VT were used in a random order.
RESULTS: The use of ventilator + RFM for PPV via ETT during High CL-Low VT period reduced the proportion of breaths with expiratory VT above target when compared to the other 3 devices (56 ± 35%, 85 ± 20%, 90 ± 25%, 92 ± 12% for ventilator + RFM, T-Piece + RFM, T-Piece, SIB, respectively; p < 0.05). During PPV via both mask and ETT, ventilator + RFM maintained the set Ti and rate, whereas SIB and T-Piece use resulted in higher rates, and T-Piece in higher proportion of breaths with prolonged Ti. During PPV via mask, ventilator + RFM reduced gas leakage compared to other devices.
CONCLUSION: In this simulation study, use of a mechanical ventilator with RFM led to an overall improvement in volume targeting at different settings of CL and reduced the gas leak during mask ventilation. The efficacy and safety of using this strategy to neonatal resuscitation in the delivery room needs to be evaluated.
Background: Ketamine has been used as an adjuvant to opioid therapy for the management of refractory cancer pain but the current evidence is insufficient to draw any conclusions regarding its efficacy. We aimed to assess the response to ketamine in patients with refractory cancer pain treated in an oncology palliative care unit.
Methods: Patients with refractory cancer pain despite opioid dose escalation were selected for a trial of parenteral ketamine infusion according to a local protocol. The medical records of those patients treated between January 2004 and December 2018 were retrospectively reviewed. The primary endpoint of the study was a favorable response to ketamine, defined as a reduction in regular opioid dose with no increase in pain intensity or a reduction in pain intensity by =2 points on the numerical rating scale (NRS) with a stable regular opioid dose. The secondary endpoint was adverse events associated with ketamine.
Results: Among the 70 patients, mean pain score on NRS improved from 7.0 to 4.0 after ketamine (P<0.001). Forty-nine patients had a reduction of pain score by =2 points on NRS, 33 had =50% reduction in pain intensity. The median decrease in regular opioid dose was 25.5%, and the mean difference was -133.2 mg (P=0.002). A favorable response to ketamine was observed in 52 patients (74.3%). The use of more than one coanalgesic (odds ratio 3.451; 95% CI: 1.087–10.960; P=0.036) was associated with a favorable response to ketamine on multivariate analysis. Adverse events were mostly mild, with the commonest being drowsiness (45.7%), hypertension (34.3%) and nightmares (25.7%). Only five and three patients required temporary suspension and early termination of ketamine infusion respectively.
Conclusions: These data demonstrated the efficacy and safety of ketamine in a population of patients with refractory cancer pain. The use of more than one coanalgesic was associated with a favorable response to ketamine. Further large and multicentered studies are warranted to confirm these data.
BACKGROUND: Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility.
METHODS: Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis.
RESULTS: Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients.
CONCLUSIONS: We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.
BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.
RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.
CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
As the national demand for donated organs continues to rise, the rate of registered donors within the United States has remained stagnant, creating a shortage of viable, transferrable organs. Lack of registered donors can be partially attributed to misconceptions about organ donation, which has led to a population less willing to register as organ donors. The utilization of educational interventions can begin to address common misconceptions and change attitudes to favor organ donation. A quantitative pretest, posttest survey design was utilized in order to assess effectiveness of an educational intervention within the college-aged population. Results suggest that educational interventions are effective in creating positive attitudes about organ donation in college-aged students.
OBJECTIVE: Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers' quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.
METHODS: A systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).
RESULTS: Of 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.
SIGNIFICANCE OF RESULTS: Additional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.
INTRODUCTION: Palliative care can significantly benefit children managing a life-limiting illness; unfortunately, services are still generally reserved for end of life. The aim of this project was to demonstrate how established guidelines and provider education could impact referrals.
METHODS: Educational sessions outlining national referral recommendations were offered to providers in the neonatal intensive care unit, pediatric intensive care unit, and Center for Cancer and Blood Disorders at a tertiary care facility. Presurveys and postsurveys were administered at the time of the intervention, and referral rates for the organization were collected for 2 months before and 2 months after the intervention.
RESULTS: While there was a clinically significant increase in hospital-wide referral rates, most important was the statistically significant (p < .1) increase in provider comfortability with established guidelines.
DISCUSSION: Palliative care is essential for optimizing quality of life. Provider knowledge of referral criteria ensures that patients receive this service early in their disease trajectory and can benefit from its inclusion within their care team.
Electrochemotherapy has been used successfully for treatment of recurrent head and neck skin cancers and skin metastasis. It combines both electroporation and chemotherapy. The authors report 4 patients, who all had metastatic periorbital malignancy. These patients were palliative with widespread metastatic malignancy. All patients had either already had multiple procedures or declined surgical resection and preferred less involved measures. The authors report technique and outcomes. Patient 1: 83-year-old man with recurrent malignant melanoma (MM) nodules (BRAF negative) in the left medial orbit and medial canthal area after rhinectomy and previous resections. Patient 2: 72-year-old man with metastatic MM who developed painful and unsightly metastatic nodules on the right and left forehead and the left medial canthus. Patient 3: 93-year-old man with background of widespread multiple myeloma, considered palliative. He developed a left forehead SCC, apparent as a fungating ulcer, which caused significant pain due to perineural invasion. Patient 4: 91-year-old woman with recurrent metastatic sebaceous cell carcinoma of the left lower eyelid obstructing her vision. All patients experienced an improvement in their pain and quality of life. None of the patients developed any significant periorbital inflammation or adverse complications. Electrochemotherapy may be a useful palliative treatment for periorbital tumors. It improves pain and reduces tumor volume. It can be considered for tumors where palliative radiotherapy may be contraindicated.
Background: The palliative care unit is an emotionally challenging place where patients and their families may feel at loss. Art can allow the expression of complex feelings. We aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention.
Methods: We conducted a qualitative study based on semi-structured interviews. The study took place in a palliative care unit from 18 January 2017 to 17 May 2017. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The data from patient interviews were analysed based on an inductive approach to the verbatim accounts.
Results: The accounts we gathered led us to weigh the positive emotions engendered by this musical intervention against the potential difficulties encountered. The artists opened a parenthesis in the care process and brought joy and well-being to the palliative care unit. Patients also encountered difficulties during the intervention: reference to an altered general state, to loss of autonomy; a sense of the effort required, of fatigue; an adaptation period; reference to the end of life, to death; a difficulty in choosing songs.
Conclusions: Although music appeared to benefit the patients, it sometimes reminded them of their altered state. The difficulties experienced by patients during the experience were also related to physical exhaustion. Additional studies are needed to determine the benefits of music for patients and their families in the palliative care unit.
Background: Although community-based serious-illness care (CBSC) is an innovative care model, it is unclear to what extent CBSC addresses palliative care needs, particularly for those patients near death.
Objectives: To evaluate palliative care services of a CBSC program.
Design: Retrospective chart reviews.
Setting/Subjects: Patients enrolled in a CBSC program in central North Carolina.
Measurement: Descriptive statistics of palliative care needs and services, such as symptom management, psychosocial support, and advance care planning (ACP), for survivors and decedents.
Results: Patients were seen in an 18-month time frame (n = 159). Mean enrollment in the program was 261.1 days (standard deviation 180.6). Patients' average age was 70 years, 56% were female, and 33% were black. Patients' most frequent comorbidities were dementia (32%), heart failure (32%), and diabetes (28%). Fifty patients (31%) died during the study period. Clinicians most frequently screened for pain (70%), constipation (57%), and dyspnea (57%). Of those screened positive, clinicians most frequently treated pain (92%), anxiety (84%), and constipation (83%). Among the 54% who screened positive for psychosocial distress, 82% received support. Clinicians screened 22% for spiritual needs; 4% received spiritual care. Among decedents, 66% were enrolled in hospice; 14% died in in-hospital. Decedents were more likely than survivors to have ACP (34% vs. 18%, p = 0.03) and a primary goal of comfort (40% vs. 12%, p < 0.01).
Conclusions: A CBSC program provided palliative care services comparable with other home-based palliative care programs. Although the CBSC program does not address all domains of palliative care, it provided most with symptom management, psychosocial support, and ACP.
BACKGROUND: palliative radiotherapy can improve quality of life for patients who are symptomatic of advanced cancers. However, this treatment modality is underused and is often mistimed, which negates its potential benefit.
AIM: the aim of this study was to assess nursing knowledge of palliative radiotherapy in the context of caring for patients with a cancer diagnosis.
METHODS: a quantitative method of research was employed using a questionnaire to assess palliative radiotherapy knowledge among a purposive sample of 162 oncology and palliative care nurses.
FINDINGS: the response rate was 48.14%. More than half of respondents reported their knowledge of radiotherapy as insufficient for their practice and almost all agreed they would benefit from more education.
CONCLUSION: nurses require more training to identify when palliative radiotherapy would be an effective symptom control option; specific areas of focus for developing future radiotherapy educational programmes are highlighted.
Opioids are often the foundation of pain management in seriously ill patients. Unfortunately, even experienced providers carry with them information that they consider "fact", when this information is not based on scientific evidence, but on "myth". Several topics were elicited based on common beliefs and misconceptions in clinical practice. These were identified via a survey of pharmacist pain and palliative care providers. Pearls from these topics were chosen that were based on evidence and would have the greatest bearing on clinical practice. The pearls address topics such as not using opioids as first-line analgesics for all types of pain, opioid-induced hyperalgesia, opioid risk management in cancer patients, use of buprenorphine in hospice and palliative care settings and use of naloxone in seriously ill patients. The pearls are supported by clinical evidence extracted from several references. They are intended to make readers give thought to opioid therapy which is strictly evidence-based, and not historical or anecdote-based. Practical recommendations are provided to give readers a starting point to base clinical decisions going forward. Readers may discover that "facts" they once learned about opioid use in seriously ill patients are actually "myths" that are a figment of the past.
OBJECTIVE: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.
METHODS: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.
RESULTS: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.
CONCLUSION: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
BACKGROUND: "End of life" is a difficult topic of conversation in East Asian cultures, even among patients and doctors who share a good rapport. In 2016, the Hospice, Palliative Care, and Life-Sustaining Treatment Decision-Making Act, which took the form of "Physician Orders for Life-Sustaining Treatment," was introduced in South Korea. This study was conducted to investigate the completion rate of Physician Orders for Life-Sustaining Treatment in patients with advanced cancer on the active recommendation of physicians, as well as patients' general attitudes toward end-of-life care.
METHODS: We conducted a preliminary, cross-sectional descriptive survey on patients with advanced cancer. A total of 101 patients with advanced solid cancer agreed to participate in the study. The primary endpoint was the rate of completion of Physician Orders for Life-Sustaining Treatment based on a doctor's suggestion. Written interviews were conducted to understand the perceptions and factors influencing patients' decisions.
RESULTS: Of the 101 patients, 72 (71.3%) agreed to prepare Physician Orders for Life-Sustaining Treatment. Patients who had an educational level of high school or higher were more likely to agree to complete Physician Orders for Life-Sustaining Treatment documentation as compared to the lower educational status group. More than half of the respondents who completed Physician Orders for Life-Sustaining Treatment documentation reported that they had more than a fair understanding of "life-sustaining care" or "Physician Orders for Life-Sustaining Treatment." Participants' reasons for Physician Orders for Life-Sustaining Treatment completion were diverse.
CONCLUSIONS: We found that highly educated patients, who understood the concept behind the policy well, tended to accept Physician Orders for Life-Sustaining Treatment without hesitation. Better education, information shared through the media, and conversations with health care providers might improve understanding of Physician Orders for Life-Sustaining Treatment in patients with cancer.
Background: Patients with blood cancers experience high-intensity medical care near the end of life (EOL) and low rates of hospice use; attributes of goals of care (GOC) discussions may partly explain these outcomes.
Methods: By using a retrospective cohort of patients with blood cancer who received care at Dana-Farber Cancer Institute and died in 2014, the authors assessed the potential relationship between timing, location, and the involvement of hematologic oncologists in the first GOC discussion with intensity of care near the EOL and timely hospice use.
Results: Among 383 patients, 39.2% had leukemia/myelodysplastic syndromes, 37.1% had lymphoma, and 23.7% had myeloma. Overall, 65.3% of patients had a documented GOC discussion. Of the first discussions, 33.2% occurred >30 days before death, 34.8% occurred in the outpatient setting, and 46.4% included a hematologic oncologist. In multivariable analyses, having the first discussion >30 days before death (odds ratio [OR], 0.37; 95% CI, 0.17-0.81), in the outpatient setting (OR, 0.21; 95% CI, 0.09-0.50), and having a hematologic oncologist present (OR, 0.40; 95% CI, 0.21-0.77) were associated with lower odds of intensive care unit admission =30 days before death. The presence of a hematologic oncologist at the first discussion (OR, 3.07; 95% CI, 1.58-5.96) also was associated with earlier hospice use (>3 days before death).
Conclusions: In this large cohort of blood cancer decedents, most initial GOC discussions occurred close to death and in the inpatient setting. When discussions were timely, outpatient, or involved hematologic oncologists, patients were less likely to experience intensive health care use near death and were more likely to enroll in hospice.
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
BACKGROUND: Revascularization is the cornerstone in the treatment of patients with critical limb-threatening ischemia (CLTI). However, the 2-year mortality rate is up to 50% in these patients. Therefore, the clinical benefit of revascularization needs to be considered carefully. The question emerges if there are changes in quality of life (QoL) and health status (HS) in the end-of-life phase of CLTI in older patients.
METHODS: Patients with CLTI and an age of 70 years or older were included in a prospective observational cohort study. Treatment consisted of endovascular revascularization, surgical revascularization, or conservative therapy. The follow-up period was 2 years. Within this follow-up period, patients completed the following questionnaires at six specified time intervals: the WHOQOL-BREF and the SF-12. Patients who died within two years after inclusion were analyzed. Final scores were defined as the last measurement at end of follow-up or death.
RESULTS: 82 patients (42.1%) died during the 24-month follow-up. QoL and HS before death did not decrease with treatment (option: endovascular intervention, surgical revascularization, or conservative therapy).
CONCLUSIONS: Older patients with CLTI and a life expectancy less than 2 years had no differences in QoL and HS before death compared to their previous measurement. Except for the mental HS domain, no differences in the percentage of patients showing significant individual change in QoL and HS were found between the treatments. For clinicians, it is important to use patient-reported outcome measure when discussing treatment for older frail patients with CLTI in a shared decision-making process.
De nombreuses zones rurales éloignées des hôpitaux voient le nombre de leurs médecins généralistes diminuer, ce qui complique l’accès aux soins pour les patients de ces territoires. Des solutions pertinentes existent cependant, comme l’illustre l’expérience du réseau Dousopal, en Normandie, qui contribue, en équipe avec les soignants du domicile, à organiser un accompagnement en soins palliatifs dans des conditions optimales pour tous.