Hiroyuki Otani

Patient-Reported Usefulness of Peripherally Inserted Central Venous Catheters in Terminally Ill Cancer Patients

CONTEXT Oral administration of medication is often difficult in terminally ill cancer patients, and a subcutaneous route is traditionally one of the most preferred parenteral routes. Recent studies suggest, however, that some patients and families prefer the intravenous route, and peripherally inserted central venous catheters (PICCs) are actively used in oncology settings. Nonetheless, in the palliative care setting, no empirical studies have investigated the patient-perceived usefulness of PICCs. OBJECTIVES The primary aim of this prospective observational study was to clarify the levels of patient-perceived comfort and convenience, in addition to procedure-related distress, resulting from the use of PICCs by terminally ill cancer patients. RESULTS Among 219 patients admitted to a palliative care unit during the one-year study period, 39 (18%) patients underwent a PICC insertion trial (a total of 44 procedures were performed because five patients underwent PICC insertion twice). Of the 44 procedures, 38 (86%) were successful, requiring a mean of 23+/-7.9 minutes, without serious procedure-related complications. Patient-reported levels of procedure-related distress were not distressing (68%), slightly distressing (8%), and distressing (24%). Patient-reported comfort levels with parenteral access were becoming more comfortable (94%) and no change (6%). Patient-reported convenience levels of parenteral access were becoming more convenient (94%) and no change (6%). Complications were reversible catheter coagulation (10%), irreversible catheter coagulation (8%), and mild levels of edema of the upper extremity (8%). The PICCs remained in place in 82% of the patients until death. The median period of placement was 15 days, with the longest placement being 81 days. CONCLUSION PICCs were safely inserted in about 90% of terminally ill cancer patients within about 20 minutes. Although 30% of the patients experienced transient mild procedure-related distress, more than 90% of the patients felt that the parenteral route was more comfortable and convenient after the procedure. PICCs may provide a safe, comfortable, and convenient alternative for terminally ill cancer patients, if placement of the PICC is individualized to the patient situation and after alternatives are considered. Further studies are needed to compare the superiority of the PICC and traditional subcutaneous route to clarify what types of patients are the most suitable for each procedure.

Burden on Oncologists When Communicating the Discontinuation of Anticancer Treatment

Objective Communicating the discontinuation of anticancer treatment to patients is a difficult task. The primary aim of this study was to clarify the level of oncologist-reported burden when communicating about discontinuation of an anticancer treatment. The secondary aims were (i) to identify the sources of burden contributing to their levels and (ii) to explore the useful strategies to alleviate their burden. Methods A multicenter nationwide questionnaire survey was conducted on 620 oncologists across Japan (response rate, 67%). Results High levels of perceived burden were reported by 47% of respondents, and 17% reported that they sometimes, often or always wanted to stop oncology work because of this burden. There was a significant association between high levels of burden and: a feeling that breaking bad news would deprive the patient of hope; concern that the patients family would blame the oncologist; concern that the patient may lose self-control; and a feeling that there was not enough time to break the bad news. Strategies perceived to be useful by oncologists included training in how to effectively communicate to patients discontinuation of anticancer treatment, a reduction in total workload to allow sufficient time to break bad news, and development of a multidisciplinary model to facilitate cooperation with other professionals and facilities. Conclusions Many oncologists reported high levels of burden relating to communication of discontinuation of anticancer treatment. A specific communication skills training program, sufficient time for communication and development of a multidisciplinary model could help alleviate the burden on oncologists.

Dignity therapy: Preliminary cross-cultural findings regarding implementation among Japanese advanced cancer patients.

Dignity therapy is a novel, brief, and individualized psychotherapeutic intervention developed in Western countries1,2 and appears to be a feasible and effective approach for addressing the existential distress experienced by advanced cancer patients.3 4 We investigated the feasibility of providing dignity therapy for terminally ill cancer patients in Japan. This study consisted of a hospice/palliative care inpatient setting (Study 1) and an inpatient setting in a regional cancer center and/or general hospital (Study 2). The subjects were adult advanced cancer patients whose estimated prognosis was of less than six months. In Study 1, potentially eligible subjects were consecutively enrolled for the study in hospice/palliative care units. In Study 2, trained psychiatrists sampled potentially eligible participants who were expected to benefit from dignity therapy. The current study was approved by the Institutional Review Board and Ethics Committee of each research institution; the trial was registered as UMIN000001140. Written consent was obtained from each patient. The study procedure was almost the same as that used in the original study.1 The participation rate of the eligible patients and the completion rate of the participants were evaluated as indicators of the feasibility. The patient’s experience undergoing dignity therapy was evaluated using the Dignity Therapy Feedback Questionnaire (DTFQ), which is a self-reported questionnaire developed by Chochinov (personal communication) to evaluate a patient’s perception regarding the usefulness of and his or her satisfaction with dignity therapy. Regarding feasibility, among 22 eligible patients (14%) who had been consecutively admitted to two palliative care units, three subjects participated while 19 patients (86%) refused. Because the refusal rate was much higher than expected and the reason for refusal as described by the subjects suggested a potentially negative influence of introducing dignity therapy to some patients, the research committee decided to stop the consecutive sampling in Study 1. The reasons for refusal were as follows: ‘It just makes me think about death’; and ‘Why would you recommend such a thing to me when I am dying?’ Because there were eight participants in Study 2 (no problems with the enrollment of these subjects were encountered), a total of 11 patients participated and completed the intervention. Regarding the DTFQ, the following findings were obtained (percentages indicate the proportion of positive responses): usefulness for improving dignity (67%), benefits (56%), improvement of meaning of current situation (56%), improvement of purpose of life (44%), usefulness for ameliorating suffering (44%), helpfulness for family (78%), usefulness for sense of well-being (56%), burden to physical condition (0%), and recommendation for other patients (33%). Our findings suggest the potential influence of unexpected underlying cultural differences and may have several potential interpretations. First, underlying differences regarding the general attitude toward a ‘good death’ between Western and Japanese populations may have influenced the lower participation rate. A previous Japanese study demonstrated that ‘unawareness of death’ is a relevant concept of good death in Japan.5 Terminally ill cancer patients who wish that they were unaware of their impending death may be less likely to participate in dignity therapy, even though they are receiving specialized palliative inpatient care. Their aversion to participating in the study may not have been due to the dignity therapy per se, but rather, their having been confronted with information that they did not wish to hear. Second, the higher refusal rate in Japan, compared with Western countries (such as a recent randomized trial with a participation rate of 50%),2 suggests that terminally ill cancer patients in Japan may try to cope with their terminal condition by denying their impending death. While some previous studies have indicated that denial is a commonly observed psychological defense mechanism among cancer patients, 6 Japanese cancer patients may be more likely to cope with their distressing medical condition using denial than Western cancer populations, as suggested by a previous study.7 Lastly, Japan still has many unique cultural characteristics. For example, because the preferred communication style is generally nonverbal, indirect, and serene, tacit understanding or heart-to-heart communication (‘ishin denshin’) operates as a powerful traditional value that is possible in a close community.8 In addition, a previous Japanese study 437214 PMJ26510.1177/02692163124372142012Akechi et al.Palliative Medicine

A qualitative study of decision-making by breast cancer patients about telling their children about their illness

ObjectiveMany breast cancer patients are troubled about telling their school-age children about their illness. However, little attention has been paid to the factors that encourage or discourage them from revealing the illness. This study explored decision-making by breast cancer patients about telling their children about their illness.MethodsParticipants were 30 breast cancer patients recruited from a regional cancer institution in Japan. Semi-structured interviews were conducted and content analysis was performed.ResultsSix preparatory stages of decision-making by Japanese breast cancer patients about telling their children about their illness were identified as follows: contemplation, preparation, action-hospitalization and surgery, action-adjuvant therapy, action-diagnosis, and action-prognosis. We also identified 11 categories of positive aspects and ten categories of negative aspects about revealing their illness to children. The categories of negative aspects with higher frequency were similar to those found by previous research, but categories of positive aspects were unique. The rate of reference to negative aspects in total reduces gradually as the preparatory stage advances, and in action-diagnosis and action-prognosis stages the balance between positive and negative aspects becomes about half and half.ConclusionsPatients, especially in action-hospitalization and surgery, can be expected to tell their children about their illness although they find negative aspects much more compelling than positive aspects and experience great distress. These patients have special needs for support from others.

Effect of leaflet-based intervention on family members of terminally ill patients with cancer having delirium: historical control study.

Objective: We aimed to assess leaflet-based intervention effects on family-perceived distress, the need for improvements in professional care for delirium, and family knowledge of delirium causes. Methods: Leaflet-based intervention effects were assessed by comparing responses of family members given in the leaflet with those of a historical control group not receiving it. Results: Knowledge of delirium causes was significantly more likely to be correct in the intervention group, while there were no significant differences in family-perceived distress or need for improvements in professional care for delirium between the 2 groups. Conclusions: The leaflet providing information about delirium improved family knowledge of cancer delirium. To relieve family distress, a comprehensive program focused mainly on psychological aspects, in addition to educational intervention with this leaflet, is a promising strategy.

The death of patients with terminal cancer: the distress experienced by their children and medical professionals who provide the children with support care.

Background Few studies have been conducted on the experiences of children of terminally ill patients or hospital-based medical professionals supporting such children. Aim This study explored distress among individuals whose parents died of cancer in childhood and among hospital-based medical professionals supporting such children. Design A qualitative study. Setting/participants The sample was 12 adults whose parents had died of cancer in childhood and 20 hospital-based medical professionals supporting children of patients’ with terminal cancer. In-depth interviews were conducted, focusing on the distress experienced by the participants. The data were analysed thematically. Results Among adults whose parents died of cancer in childhood, we identified themes related to the period before death (eg, concealing the parents illness), the time of death (eg, alienation due to isolation from the parent), soon after death (eg, fear and shock evoked by the bizarre circumstances, regrets regarding the relationship with the deceased parent before death), several years thereafter (ie, distinctive reflection during adolescence, prompted by the parents absence) and the present time (ie, unresolved feelings regarding losing the parent). We identified seven themes among the medical professionals (eg, lack of knowledge/experience with children, the familys attempts to shield the child from the reality of death, estrangement from the family once they leave the hospital). Conclusions An important finding of the study is that the participants’ grief reaction to their parents’ deaths during childhood was prolonged. Moreover, hospital medical professionals may find it difficult to directly support affected children. Comprehensive support involving organisations (eg, local communities) may be necessary for children who have lost a parent.