Medical education can be described as a socialization process that has a tendency to produce doctors who struggle to convey to patients that they care. Yet, for people who are suffering, to enjoy the quality of life they are entitled to, it is important that they feel cared for as people, rather than simply attended to as patients.

This article addresses how we teach medical students the art of caring for the person rather than simply treating the disease—a question particularly relevant to end-of-life care where, in addition to the physical needs, attention to the psychosocial, emotional, and spiritual needs of the patient is paramount. Following an overview of what it is to care and why it is important that patients feel cared for, we investigate how we learn to care and develop caring human relationships, describing the development and display of empathy in adulthood and the developmental impact of human interaction.

We outline evidence of situational barriers to effective education about care in medicine including role models, ward culture, and the socialization process.

We then propose a model for medical education based on patient contact, reflection, self-care, role model development, and feedback that will see students learn the art of human care as well as the science of disease management.

Caregivers of cancer patients are faced with significant demands that can seriously impact their physical and mental health. It is important for healthcare professionals to be aware of caregivers' support needs in order for these to be adequately addressed. Our study develops a German version of the Family Inventory of Needs (FIN) and provides a comprehensive evaluation of its acceptability and psychometric properties.

Cross-sectional data from 308 participants were taken from the baseline assessment of an ongoing prospective study. Retests were completed by 46 participants approximately one week after baseline. Informal caregivers of terminally ill cancer patients were recruited from three hospitals in Vienna. Questionnaires for hope (IHS), traumatic stress (IES–R), and depression and anxiety (HADS) were employed together with the translated FIN to assess concurrent and discriminant validity.

The internal consistency of FIN–Importance had a Cronbach's α of 0.94, and that for FIN–Fulfillment was α = 0.96. Retest reliability for FIN–Importance was r = 0.97, while that for FIN–Fulfillment could not be calculated due to missing responses to this subscale. Concurrent and discriminant validity tests for the scale and the discriminative power of items were adequate. However, missing responses may limit the feasibility of using this scale in research settings. We identified six questions that could be excluded from the scale in order to increase its acceptability and further improve its psychometric properties.

Our results suggest that the FIN is suitable for clinical settings. For use in research, we suggest four adaptations to increase the scale's acceptability and psychometric properties. The FIN can be a valuable tool for informing the emotional, physical, and psychological support provided to family carers of people who are terminally ill with cancer.

The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.

The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.

A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.

Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

Despite the high prevalence of delirium in palliative care settings, this diagnosis is frequently missed, particularly in patients with hypoactive delirium. These patients are also commonly misdiagnosed with depression because of the overlap in symptoms between the two diagnoses. Failure to promptly diagnose delirium can have significant ramifications in terms of delirium reversal, subsequent patient involvement in end-of-life decision making, and the recognition and treatment of other symptoms.

We report a case of a 63-year-old French-speaking woman admitted to our inpatient palliative care unit with colorectal cancer and a history of depression. This case report highlights the major challenges associated with making the diagnosis of delirium in a patient with a complex medical history, including depression.

The patient presented with symptoms of depressed mood and fluctuation in psychomotor activity, but failed to respond to an increase in her fluoxetine treatment in addition to methylphenidate and treatment of her hypothyroidism. A psychiatric assessment in her own language detected features of inattention and confirmed a diagnosis of delirium that was multifactorial, secondary to a combination of posterior reversible encephalopathy syndrome (PRES), hypothyroidism, hepatic dysfunction, and medication.

Subsyndromal delirium may present with mood lability, and as delirium and depression can coexist, clinicians should perform a delirium screen for all patients presenting with symptoms of depression, preferably in the patient's first language. Cognitive testing can be particularly helpful in distinguishing delirium, especially hypoactive delirium, from depression.

This study aimed to clarify the differential contributions of situational and individual factors to burnout symptoms experienced by two independent groups of specialist oncology nurses working in oncology hospital units or in hospices.

The study involved a group of specialist oncology nurses working in hospital oncology units (n = 59) and a group of specialist oncology nurses working in hospices (n = 33). Participants were invited to provide demographic data, and indicate the clinical setting in which they worked and their work experience; the Italian versions of the Maslach Burnout Inventory (MBI) (a measure of burnout symptoms), the Hospital Anxiety and Depression Scale (HADS) (a measure of anxiety and depression), and the Attachment Style Questionnaire (ASQ) (a measure of relational style) were then administered.

The two groups of nurses were well matched for age, work experience, and levels of anxiety and depression. Regarding their relational style, the two groups only differed significantly on two subscales of the ASQ (i.e. “Confidence” and “Relationships as Secondary”). The two groups significantly differed in the levels of all burnout symptoms investigated (emotional exhaustion, depersonalization, and personal achievement), with nurses working in hospital units showing higher levels of burnout symptoms. Interestingly, multivariate regression analyses showed that the institutional factor (clinical setting in which nurses worked) clearly emerged as the only factor that influenced the level of all burnout symptoms, whereas the contribution of individual factors was less significant.

These findings help to clarify the differential contributions of institutional and individual factors to burnout symptoms in specialist oncology nurses, and corroborate the need for interventions to contain nurses' burnout symptoms.

Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence.

Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families.

A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention.

The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the “right thing” to say, and a lack of experience. A significant increase (p < 0.5) in competence and confidence from baseline levels followed participation in the simulated scenarios.

Simulation was found to be an effective means of preparing students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met.

To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children.

Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations.

Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an “all-or-nothing” phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population.

A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory–Human Services Survey (MBI–HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL–90–R Symptoms Inventory.

There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI–HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15–30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it.

A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.

Thiamine is an essential coenzyme for oxidative metabolisms; however, it is not synthesized in the human body, and the average thiamine storage capacity is approximately 18 days. Therefore, thiamine deficiency (TD) can occur in any condition of unbalanced nutrition. If TD is left untreated, it causes the neuropsychiatric disorder Wernicke encephalopathy (WE). Although WE is a medical emergency, it is sometimes overlooked because most patients with WE do not exhibit all of the typical symptoms, including delirium, ataxia, and ophthalmoplegia. If all of the typical clinical symptoms of WE are absent, diagnosis of TD or WE becomes more difficult.

From a series of cancer patients, we reported three patients who developed TD without the typical clinical symptoms of WE.

A 69-year-old woman with pancreatic body cancer receiving chemotherapy with paclitaxel and gemcitabine for six months. Her performance status (PS) was 1. A detailed interview revealed that she had appetite loss for six months. Another 69-year-old woman with ovarian cancer received nedaplatin; her PS was 0. A detailed interview revealed that she had appetite loss for three months. A 67-year-old woman with colon cancer receiving ramucirumab in combination with second-line fluorouracil with folinic acid and irinotecan. Her PS was 1. A detailed interview revealed that she had appetite loss for three weeks. None exhibited typical clinical signs of WE, but they developed appetite loss for six months, three months, and three weeks, respectively. The diagnosis of TD was supported by abnormally low serum thiamine levels.

This report emphasizes the possibility of TD in cancer patients even when patients do not develop typical clinical signs of WE. The presence of appetite loss for more than two weeks may aid in diagnosing TD. Patients receiving chemotherapy may be at greater risk for developing TD.

Impaired fertility and reproductive health after cancer treatment is an important quality-of-life issue among female childhood cancer survivors (CCSs). This study aims to measure female CCSs' knowledge about their reproductive health and their exposure to and views about reproductive counseling (RC).

This is a cross-sectional, web-survey study of female CCSs aged 18 to 45 years who were diagnosed with cancer before age 21 years and currently had no evidence of disease.

Fifty-six CCSs participated (response rate = 48%; mean current age = 26). Knowledge about reproductive health after cancer treatment was severely limited within this sample of highly educated survivors (91% educated beyond high school), who provided correct answers only 32% of the time. Only 9 and 5% of the women had pursued RC with a fertility specialist before and after cancer treatment, respectively. The majority thought they had not been provided enough information about reproductive health. White ethnicity (p < 0.001), higher annual income (p = 0.007), and higher education level (p = 0.02) were significantly associated with a positive opinion about RC.

A limited number of CCSs took advantage of RC in spite of their high interest in and limited knowledge about reproductive issues. Targeted referrals for RC may allow for improved decision making about reproductive options.

When infants are at risk of being born at a very premature gestation (22–25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers.

Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme “Quality of Interactions.” These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions.

Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for).

Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Palliative care plays an essential role in enhancing the quality of life and quality of death for residents in long-term care homes (LTCHs). Access to palliative care specialists is one barrier to providing palliative care to LTCHs. This project focused on palliative telemedicine, specifically evaluating whether integration of early palliative care specialist consultation into an LTCH would be feasible through the implementation of videoconferencing during routine interdisciplinary care conferences.

This was a mixed-methods evaluation of a pilot program implementation over 6 months, to integrate early palliative care into an LTCH. There were two pilot communities with a total of 61 residents. Resident demographics were collected by a chart review, and palliative telemedicine feasibility was evaluated using staff and family member surveys.

For the 61 residents, the average age of the residents was 87 years, with 61% being female and 69% having dementia as the primary diagnosis. The mean CHESS (Change in Health, End-Stage Disease, Signs, and Symptoms) and ADL (Activities of Daily Living) scores were 0.8 and 4.0, respectively, with 54% having a Palliative Performance Scale score of 40. Seventeen clinical staff surveys on palliative teleconferences were completed with the majority rating their experience as high. Ten out of the 20 family members completed the palliative teleconference surveys, and the majority were generally satisfied with the experience and were willing to use it again. Clinical staff confidence in delivering palliative care through telemedicine significantly increased (P = 0.0021).

The results support the feasibility of videoconferencing as a means of palliative care provision. Despite technical issues, most clinical staff and families were satisfied with the videoconference and were willing to use it again. Early integration of palliative care specialist services into an LTCH through videoconferencing also led to improved self-rated confidence in the palliative approach to care by clinical staff.

Family therapy has developed several approaches to framing questions within family meetings, but few of these techniques have been adapted for palliative care. We focus on the application of questioning techniques from systemic family therapy to palliative care. More specifically, we describe and give examples of the model of asking questions developed by Karl Tomm (1988) through its application in Family Focused Grief Therapy (FFGT), a preventive intervention delivered to high-risk families during palliative care and bereavement.

First, the type of questions used across the course of therapy is explored based on the interventive questioning model. Then, a case example is provided to demonstrate the use and adaptation of this model in a palliative care setting.

At the beginning of therapy, the most frequent questions were linear and circular, moving around the family to build up a picture of events from everyone's perspective. As for the frequency of reflexive and strategic questions, these increased as the therapy progressed, bringing the family to new perspectives. The case example fleshes out the importance of each type of question, all of which have a proper place in the course of therapy.

These illustrations highlight the value of having a model of questioning styles to guide the clinician when exploring palliative care issues, such as care provision, coping and grief, intimacy, and discussing death. This framework could be useful in guiding supervisors, trainees, and clinicians seeking to build skills and optimize their interventions in a palliative care setting.

The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated.

The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.

A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement.

At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term.

For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression.

Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale–21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS–R).

At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS–R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ2(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05.

The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.

Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.

A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.

Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.

Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.