Medical decisions in the context of advanced cancer are more based on patient values and preferences than during the early stages of the disease. The implementation of shared decision-making is particularly important with an oncology palliative care population. However, few decision support tools focus on this population. This literature review aims to identify decision support tools related to palliative care for an oncological population and to assess their quality using International Patient Decision Aids Standards criteria.

The tools were identified through PsycINFO, EMBASE, MEDLINE, and CINAHL databases; the inventory of tools to assist the decisions of the Ottawa Hospital Research Institute; and through the register of Cochrane trials. They were then evaluated using the third version of the International Patient Decision Aids Standards instrument.

Sixteen tools were identified, which targeted five types of cancer and addressed a particular decision or the use of chemotherapy in addition to palliative care. The quality of the reviewed tools varies.

Clinicians can use four decision support tools related to palliative care with an oncology population that meet a certain quality standard. Further studies are needed to develop new decision support tools targeting more types of cancer and decisions.

The aim was to to establish core components of spiritual care training for healthcare professionals in Australia.

This study used the Delphi technique to undertake a consensus exercise with spiritual care experts in the field of healthcare. Participant opinion was sought on (i) the most important components of spiritual care training; (ii) preferred teaching methods; (iii) clinical scenarios to address in spiritual care training; and (iv) current spiritual assessment and referral procedures.

Of the 107 participants who responded in the first round, 67 (62.6%) were female, 55 (51.4%) worked in pastoral care, and 84 (78.5%) selected Christian as their religious affiliation. The most highly ranked components of spiritual care training were “relationship between health and spirituality,” followed by “definitions of spirituality and spiritual care.” Consensus was not achieved on the item “comparative religions study/alternative spiritual beliefs.” Preferred teaching methods include case studies, group discussion, role-plays and/or simulated learning, videos of personal stories, and self-directed learning. The most highly ranked clinical scenario to be addressed in spiritual care training was “screening for spiritual concerns for any patient or resident.” When asked who should conduct an initial spiritual review with patients, consensus was achieved regarding all members of the healthcare team, with most nominating a chaplain or “whoever the patient feels comfortable with.” It was considered important for spiritual care training to address one's own spirituality and self-care. Consensus was not achieved on which spiritual care assessment tools to incorporate in training.

This Delphi study revealed that spiritual care training for Australian healthcare professionals should emphasize the understanding of the role of spirituality and spiritual care in healthcare, include a range of delivery methods, and focus upon the incorporation of spiritual screening. Further work is required to identify how spiritual care screening should be conducted within an Australian healthcare setting.

Palliative sedation is a common treatment in palliative care. The home is a difficult environment for research, and there are few studies about sedation at home. Our aim was to analyze this practice in a home setting.

We conducted a retrospective cross-sectional descriptive study in a home cohort during 2011. The inclusion criteria were as follows: 18 years or older and enrolled in the Palliative Home Care Program (PHCP) with advanced cancer. The variables employed were: sex, age, primary tumor location, and place of death. We also registered indication, type, drug and dose, awareness of diagnosis and prognosis, consent, survival, presence or absence of rales, painful mouth, and ulcers in patients sedated at home. We also collected the opinions of family members and professionals about the suffering of sedated patients.

A total of 446 patients (56% at home) of the 617 admitted to the PHCP between January and December of 2011 passed away. The typical patient in our population was a 70-year-old man with a lung tumor. Some 35 (14%) home patients required sedation, compared to 93 (49%) at the hospital. The most frequent indication was delirium (70%), with midazolam the most common drug (mean dose, 40 mg). Survival was around three days. Rales were frequent (57%) as well as awareness of diagnosis and prognosis (77 and 71%, respectively). Perception of suffering after sedation was rare among relatives (17%) and professionals (8%). In most cases, the decision was made jointly by professionals and family members.

Our study confirmed the role of palliative sedation as an appropriate therapeutic tool in the home environment.

Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context.

As part of a secondary analysis, data derived from two qualitative primary studies on FCs’ burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement.

Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs’ experiences: “Connectedness,” “Religious Faith,” “Transcendence,” “Hope,” and a fifth overarching aspect which we named “Ongoing integration of spiritual experience.” Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs’ narratives.

In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs’ problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

Given the increasing number of patients requiring palliative care and the need for more professionals who are able to provide care for the dying comfortably, assessment of medical attitudes toward end-of-life care is becoming a key aspect of medical education. The present study aimed to establish whether the Frommelt Attitude Toward the Care Of the Dying, Form B (FATCOD–B) meets current psychometric standards of validity for an assessment tool in medical education.

The participants were 200 undergraduate medical students. Since in a previous study the FATCOD–B was found to have a weak structure due to poor item validity, a refined version was proposed and tested in the present study. Confirmatory factor analysis and the Rasch model were employed to assess its dimensionality and psychometric properties.

The construct measured by the FATCOD–B continues to be misspecified. The tool has a two-dimensional structure. The first is well-structured and demonstrates appreciable measurement and discriminant capabilities. The second has low validity because its measurement capabilities are based on weakly correlated items.

Our results suggest that the FATCOD–B measures a two-dimensional construct and that only its first dimension is a robust measurement tool for use in medical education to evaluate undergraduates' attitudes about caring for the dying.

The purpose of this study was to assess the psychological care needs of cancer patients throughout the healthcare process: after diagnosis, after medical treatment (surgery, chemotherapy, radiotherapy) and during follow-up.

A total of 703 ambulatory cancer patients were assessed in this study. The inclusion period was from April 1, 2005 to April 30, 2007. The first psychological scales used were the 14-item Hospital Anxiety and Depression Scales (HADS), which has two sub-scales for anxiety (7 items) and for depression (7 items). All patients with a score ≥14 were assessed through the Structured Clinical Interview for Psychiatric Disorder (SCID-I) of the DSM-IV. All data were compared with sociodemographic and medical characteristics.

Of the 703 cancer patients in the study, 349 were men and 354 women, with a mean age of 53 years. The median time between the cancer diagnosis and our clinical interview was 6 months (range, 12 days to 190 months). Overall, the screening tools indicated that one in four patients needed psychological care. The most common psychiatric diagnosis was adjustment disorder (129 cases), whereas 10 patients were diagnosed with major depression. Using a HADS cut-off score of >7 for anxiety and depression, 28% and 17% of patients, respectively, were classified as “possible clinical cases.” Risk factors for distress included age <65 years, asthenia, constipation, and a low performance status. However, chemotherapy treatment was found to be a protector against distress in cancer patients.

Chemotherapy treatment is interpreted by the patients as a protector against cancer, thereby reducing distress levels.

Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a “toolkit” to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers.

Guided by the RE-AIM (Reach, Effectiveness–Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits.

We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey.

We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive “toolkit” to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL).

A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep–accept group, (2) the keep–reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference.

The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care.

The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.

There is substantial evidence that tricyclic antidepressants are effective in the management of chronic pain, including cancer pain. In oncological settings, these agents are used as adjuvant analgesic drugs. However, cases of akathisia due to tricyclic antidepressants used as adjuvant analgesic therapy have not previously been reported.

Two cancer patients experiencing chronic pain who were refractory to nonsteroidal anti-inflammatory drugs and opioids were prescribed amoxapine as an adjuvant analgesic therapy for neuropathic pain. These patients developed inner restlessness and restless physical movements after amoxapine was prescribed. Although symptoms were atypical, akathisia was suspected and discontinuation of amoxapine resolved the symptoms.

Akathisia should be considered in patients receiving adjuvant analgesic therapy with tricyclic antidepressants. Early detection and appropriate treatment will relieve this distressing symptom. Restless movements involving parts of the body other than the legs may be the clue to the diagnosis.

The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure.

Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.

Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively).

In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

There is an increasing recognition of the significance of music as a complementary therapy in palliative care. Limited studies exist on how music is used as a coping mechanism by palliative care patients. Therefore, the purpose of this scoping review was to explore the efficacy of music interventions for palliative care.

We conducted a literature search between June and November 2019 in the Cumulative Index of Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), and PubMed, which includes MEDLINE. The search identified eight articles which met the inclusion and exclusion criteria.

Using thematic analysis, six themes were synthesied to show how music contributes to palliative care. The six themes include Pain management; Relaxation; Happiness and hope; Anxiety and depression management; Enhanced spirituality; and Improved quality of life. These themes reflect the psychological and emotional benefits palliative care patients derive from music therapies.

Music therapy can be an effective psychosocial approach when managing palliative symptoms through its therapeutic effects on physical, psychological, emotional, and spiritual well-being.

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden.

This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time.

Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time.

Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence of the accuracy of measures used to screen adults for spiritual suffering.

A systematic review of the literature. We searched five scientific databases to identify relevant articles. Two independent reviewers screened, extracted data, and assessed study methodological quality.

We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the two-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82–87%), and the revised Rush protocol had the highest specificity (81–90%). The methodological quality of all included studies was low.

While most of the identified spiritual screening measures are brief (comprised 1 to 12 items), few had sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.

The number of diagnosed cases of stomach cancer in Western countries is relatively small compared to prevalence rates in Eastern populations. This disparity creates a general lack of information and understanding of the experience of patients treated for this disease in North America. Surgical removal of the stomach, also called total gastrectomy (TG), is presently the only curative treatment available to patients with stomach cancer. Considering the impact such a procedure may have, very little is known about what factors influence an individual's postsurgical quality of life (QL).

This article reviews current literature and examines three unique case studies. Semi-structured interviews were analyzed using content analysis, a qualitative analytic approach for reporting combined subject responses.

Participants included one 37-year-old man with multiple polyps in his stomach and a family history of stomach cancer, one 18 year-old man with a confirmed CDH1 mutation and a family history of stomach cancer, and one 33-year-old man with confirmed metastatic gastric adenocarcinoma. Subjective patient experience was categorized into: (1) making the decision, (2) treatment impact, and (3) life after TG. Prior to surgery, all patients carefully evaluated their perceived risk compared to the treatment consequences and indicated that a certain event triggered their decision. The largest treatment impacts were learning to eat again and adjusting to the physical changes. Each patient endorsed that their experience made them appreciate and make the most of life.

This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

Experiencing a life-threatening illness such as cancer can elicit both negative (e.g., distress) and positive (e.g., growth) psychological responses. The present study sought to determine the correlates of four positive psychological byproducts in cancer survivors: becoming a stronger person, coping better with life's challenges, making positive changes in life, and adopting healthier habits.

Data for this cross-sectional study were taken from the Medical Expenditures Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (Yabroff et al., 2012). Cancer survivors (N = 785) reported their sociodemographic and cancer-related characteristics. Descriptive statistics were utilized to summarize cancer survivor characteristics, including demographic factors, cancer factors, and stressors and resources related to cancer. Multivariable logistic regressions were employed to assess the independent association of the stressors and resources with each psychological response, controlling for covariates. All analyses were weighted to account for the complex sampling design of the MEPS.

In multivariable analyses, those with a family caregiver were 50% more likely to report better coping with challenges, and around 70% were more likely to report making positive changes in life or adopting healthier habits because of their cancer. Receiving informational support from healthcare providers was also consistently associated with positive byproducts (odds ratios ranging from 1.6 to 2.0). Few of the stressors were associated with positive byproducts: having insurance problems due to cancer was positively associated with becoming a stronger person, and work limitations were associated with making positive changes in life; those who reported high perceived chances of recurrence were less likely to report becoming a stronger person.

Having a family caregiver and receiving detailed informational support from healthcare providers were associated with reporting positive experiences with cancer. The hypotheses and future research stimulated by these findings may improve our understanding of the process by which positive byproducts develop and may ultimately help improve psychological well-being among cancer survivors.

A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness.

A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia.

The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed.

This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.