Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care.

Eight young adults (18–40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions.

Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25–406 miles).

Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.

The aim of this study was to learn how music therapy sessions, held prior to the death of a loved one, impact spirituality in surviving caregivers of advanced cancer patients.

The method of naturalistic inquiry was used to investigate the spiritual meaning of pre-loss music therapy sessions. Bereaved caregivers of seven different patients, who had been receiving music therapy through a home-based hospice program, participated in individual open-ended interviews. Interviews were recorded, transcribed, and coded. Themes were organized as they emerged.

As caregivers reflected on their experiences in music therapy, they reported autonomous joy (music therapy affected the caregiver directly) and empathic joy (caregivers' joy was based in remembering seeing the patient happy in music therapy). They also noted feelings of empowerment due to the ways they felt they had contributed in the care of the patients through music therapy. The caregivers were found to engage in processes of reflection that inspired these spiritual themes: reflection on the present (connectedness), reflection on the past (remembrance), and reflection on the future (hope). They referred to the ways that the music therapy sessions helped them find connection with self, others (through bringing their loved ones “back to life” and have a “renewal of self”), and the “beyond”; and that times in music therapy brought them happy memories and sentiments of hope. Meaning through transcendence was found to be the overarching trend in this study, as caregivers were lifted from remorse into heightened sense of meaning and gained “airplane views” of their lives.

Pre-loss music therapy can potentially assist caregivers during times of bereavement, as they retain memories of joy and empowerment, rather than memories of pain and distress, and find meaning through transcendence.

Little is known about the subjective experience of surrogates who authorize do not resuscitate (DNR) orders. This experience seems especially acute in settings such as New York State, where patients and surrogates generally give written consent for DNR orders. The goal of this study is to investigate the subjective and emotional experience of surrogates who authorize DNR orders in this setting.

A qualitative, phenomenological research design was used. Surrogates of patients on the medical service were approached no earlier than 1 day and no later than 7 days after authorizing a DNR order. The interview guide was open-ended and included general prompts. Interviews were taped and transcribed. Researchers then coded the transcripts and examined the data for clusters of themes. They then met to discuss and recode disagreements.

Saturation was met after 10 subjects were interviewed. The following major surrogate themes were found: (1) Signing a DNR order is a process, not an isolated act. (2) The presence or absence of good quality communication and psychological support from health care personnel are among the most important factors in this process. (3) The process of signing a DNR order can raise many negative emotions including guilt, ambivalence, and conflict. (4) Prior discussions, documents such as living wills, and consensus among family members make it easier to determine the patient's wishes and carry them out by signing the DNR. (5) The surrogates believed that signing a DNR order is a prerequisite to obtaining adequate opioid analgesia.

The experience of authorizing a DNR order is a complex and emotional decision-making process. Evidence of the patient's prior wishes and support from health care personnel make the process easier. It is disconcerting that surrogates viewed DNR orders as a prerequisite to obtaining relief for a patient's pain or suffering.

Exposure to the death and dying of others is an anxiety-provoking condition that can contribute to psychological stress. However, the results of empirical studies that evaluated work-related outcomes among physicians and nurses with repeated exposure to dying patients are not consistent.

Our aim was to evaluate whether a high level of exposure to death and dying (LED) can increase the risk for poor professional quality of life (ProQoL) in most healthcare workers, but it can also improve ProQoL in a subset of healthcare workers with specific characteristics.

We employed a cross-sectional survey designed to better understand the role of LED as a predictor of ProQoL among healthcare workers.

Comparison of physicians and nurses with high LED (home-based palliative care units) with a matched group of physicians and nurses with low LED (primary care units) and evaluation of possible interaction effects among LED, death anxiety (DA), and engagement as predictors of ProQoL.

The final sample included 110 questionnaires from the high-LED group (response rate = 39%) and 131 from the low-LED (response rate = 24%) group. Workers with high LED reported an increased level of compassion satisfaction (CS) and low to moderate levels of burnout (BU) and secondary traumatic stress (STS), with no significant differences with respect to other healthcare providers. Although levels of CS, STS, and BU did not differ between groups, a univariate MANOVA revealed that the interaction effect of LED × Engagement reduced levels of CS and that the interaction effect of LED × DA increased STS among workers with high LED.

LED was significantly correlated with ProQoL among healthcare workers with high LED due to the reported interaction effect. These findings imply, for the first time, that there is a possible correlation between engagement and the risk for poor ProQoL among workers with high LED. Further research is essential to gain a better understanding of this issue.

Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.

Both family members during ongoing APHC and family members 3–9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.

Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.

The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

This study aimed to explore whether aesthetic beauty and the pleasure that results from artistic activity can contribute to a reduction in the symptoms experienced by palliative care patients, and to improve the effectiveness of art therapy sessions.

A self-assessment of six symptoms (pain, anxiety, ill-being, tiredness, sadness, and depression) adapted from the Edmonton Symptom Assessment System (ESAS) was completed by patients before and after a one-hour art therapy session. This assessment was completed after the session with a self-assessment of aesthetic feeling. A correlation analysis was then performed.

From July of 2012 to December of 2013, 28 patients took part in 63 art therapy sessions. On the whole, these sessions reduced the global distress of patients by 47% (p < 0.0001). There was a significant reduction in all the symptoms studied; pain (p = 0.003), anxiety (p < 0.0001), ill-being (p < 0.0001), tiredness (p < 0.0001), sadness (p < 0.0001), and depression (p < 0.0001). A study of the significant correlations (0.35 < rs < 0.52, p < 0.05) indicated that technical satisfaction, aesthetic beauty, and pleasure are all involved to varying degrees in reduction of symptoms.

Our findings confirm the benefits of art therapy in reducing distress within the palliative context. We also make suggestions for the future direction and improvement of these sessions.

Spiritual history taking by physicians is recommended as part of palliative care. Nevertheless, very few studies have explored the way that experienced physicians undertake this task.

Using grounded theory, semistructured interviews were conducted with 23 physicians who had experience in caring for advanced cancer patients. They were asked to describe the way they discuss spirituality with their patients.

We have described a delicate, skilled, tailored process whereby physicians create a space in which patients feel safe enough to discuss intimate topics. Six themes were identified: (1) developing the self: physicians describe the need to understand and be secure in one's own spirituality and be comfortable with one's own mortality before being able to discuss spirituality; (2) developing one's attitude: awareness of the importance of spirituality in the life of a patient, and the need to respect each patient's beliefs is a prerequisite; (3) experienced physicians wait for the patient to give them an indication that they are ready to discuss spiritual issues and follow their lead; (4) what makes it easier: spiritual discussion is easier when doctor and patient share spiritual and cultural backgrounds, and the patient needs to be physically comfortable and willing to talk; (5) what makes it harder: experienced physicians know that they will find it difficult to discuss spirituality when they are rushed and when they identify too closely with a patient's struggles; and (6) an important and effective intervention: exploration of patient spirituality improves care and enhances coping.

A delicate, skilled, tailored process has been described whereby doctors endeavor to create a space in which patients feel sufficiently safe to discuss intimate topics.

Many cancer patients report changes in how they experience meaning in life and being confronted with life's limitations, understanding themselves as being vulnerable, finite, and free beings. Many would like to receive psychotherapeutic help for this. However, psychotherapy for these concerns often either focuses primarily on meaning in life (e.g., meaning-centered/logotherapy) or on existential givens (e.g., supportive–expressive therapy). The relationship between meaning in life and existential givens seems relatively unexplored, and it seems unclear how therapists can integrate them. The present article aims to explore the relationship between meaning and existential givens.

Martin Heidegger was a founder of existentialism, inspiring both meaning therapies and supportive–expressive therapies. Therefore, we systematically apply his understanding of these phenomena, elucidated by four elements in his central metaphor of “the house.”

(1) Walls: In everyday life, we construct ordinary meanings, like the walls of a house, to protect us from our surroundings, wind, and rain. (2) Surroundings (“existential givens”): Confronted with cancer, the meanings/walls of this house may collapse; people may start seeing their surroundings and understand that they could have built their house at a different location, that is, they understand the broad range of possibilities in life, their responsibility to choose, and the contingency of current meanings. (3) How to design, build, and dwell: People may design, build, and dwell in their house in different ways: they may lock themselves in their house of impermeable “ordinary meanings” and deny the existence of existential surroundings; they may feel overwhelmed by all possibilities and be unable to experience meaning; they may build the house as their true home, use life's possibilities, and listen to their true self by building permeable “existential meanings.” (4). Navigator: People may experience inner guidance to navigate in designing, building, and dwelling in this house.

Meaning in life and existential givens are intertwined. Therefore, we suggest that it is necessary for psycho-oncologists to address both. Further clinical validation is required.

One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.

We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.

White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.

To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

In the intensive care setting, delirium is a common occurrence that comes with subsequent adversities. Therefore, several instruments have been developed to screen for and detect delirium. Their validity and psychometric properties, however, remain controversial.

In this prospective cohort study, the Confusion Assessment Method for the Intensive Care Unit (CAM–ICU) and the Intensive Care Delirium Screening Checklist (ICDSC) were evaluated versus the DSM–IV–TR in the diagnosis of delirium with respect to their validity and psychometric properties.

Out of some 289 patients, 210 with matching CAM–ICU, ICDSC, and DSM–IV–TR diagnoses were included. Between the scales, the prevalence of delirium ranged from 23.3% with the CAM–ICU, to 30.5% with the ICDSC, to 43.8% with the DSM–IV–TR criteria. The CAM–ICU showed only moderate concurrent validity (Cohen's κ = 0.44) and sensitivity (50%), but high specificity (95%). The ICDSC also reached moderate agreement (Cohen's κ = 0.60) and sensitivity (63%) while being very specific (95%). Between the CAM–ICU and the ICDSC, the concurrent validity was again only moderate (Cohen's κ = 0.56); however, the ICDSC yielded higher sensitivity and specificity (78 and 83%, respectively).

In the daily clinical routine, neither the CAM–ICU nor the ICDSC, common tools used in screening and detecting delirium in the intensive care setting, reached sufficient concurrent validity; nor did they outperform the DSM–IV–TR diagnostic criteria with respect to sensitivity or positive prediction, but they were very specific. Thus, the non-prediction by the CAM–ICU or ICDSC did not refute the presence of delirium. Between the CAM–ICU and ICDSC, the ICDSC proved to be the more accurate instrument.

The World Health Organization (WHO) definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness …” recognizes the importance of family members in this setting. In practice, family meetings account for a significant amount of the weekly workload in a specialist inpatient palliative care unit. Despite this, there is little empirical evidence to support the benefits of family meetings from the perspective of family members.

A prospective study over 6 months, invited a designated family member to complete a self-report instrument (SRI) and the Family Inventory of Needs (FIN) questionnaire prior to, immediately following, and 48 hours after a planned family meeting attended by several members of the multidisciplinary team.

Thirty-one designated family members completed the study. The SRIs completed prior to a family meeting identified particular areas of concern and worry for family members, and also helped to generate an agenda based on the family's particular needs. The pre-meeting FIN identified areas of patient care of greatest importance to each family member, and asked them to rate whether particular care needs were presently met or unmet, in their opinion, by the healthcare team caring for the patient. Following the family meeting, repeat SRIs showed an overall reduction in concerns and increased confidence in dealing with those issues raised. Post-family meeting FIN scores confirmed a greater number of met care needs compared with pre-meeting scores, all of which were sustained over time.

This study confirms the value of planned multidisciplinary family meetings for patients in specialist inpatient palliative care units. It identifies the often unmet needs of family members and the sustained benefits associated with formal family meetings.

To clarify and record their role in the care of patients, hospital chaplains are increasingly called on to document their work in the medical record. Chaplains' documentation, however, varies widely, even within single institutions. Little has been known, however, about the forms that documentation takes in different settings or about how clinicians interpret chaplain documentation. This study aims to examine how chaplains record their encounters in an intensive care unit (ICU).

We performed a retrospective chart review of the chaplain notes filed on patients in the adult ICUs at a major academic medical center over a six-month period. We used an iterative process of qualitative textual analysis to code and analyze chaplains' free-text entries for emergent themes.

Four primary themes emerged from chaplain documentation. First, chaplains frequently used “code language,” such as “compassionate presence,” to recapitulate interventions already documented elsewhere in a checklist of ministry interventions. Second, chaplains typically described what they observed rather than interpreting its clinical significance. Third, chaplains indicated passive follow-up plans, waiting for patients or family members to request further interaction. Fourth, chaplains sometimes provided insights into particular relationship dynamics.

As members of the patient care team, chaplains access the medical record to communicate clinically relevant information. The present study suggests that recent emphasis on evidence-based practice may be leading chaplains, at least in the medical center we studied, to use a reduced, mechanical language insufficient for illuminating patients' individual stories. We hope that our study will promote further consideration of how chaplain documentation can enhance patient care and convey the unique value that chaplains add to the clinical team.

The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care.

The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire.

Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems.

Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Breathlessness is the most common devastating symptom of advanced chronic obstructive pulmonary disease (COPD). The Breathlessness Intervention Service (BIS) is a multidisciplinary service that uses both pharmacological and non-pharmacological evidence-based interventions to reduce the impact of the symptom. The results of a Phase II evaluation of the service are reported.

Pretest - posttest analysis of non-randomized data was performed for 13 patients with severe advanced COPD referred to BIS.

Mean VAS-Distress scores (primary outcome measure) decreased (improved) for the group between baseline and follow up suggesting a clinically significant improvement: 6.88 (SD = 2.50) to 5.25 (SD = 2.99). At an individual level, 11 of the 13 patients showed a decrease in their distress due to breathlessness, and for eight of these this was clinically significant (range of all decreases 0.3–7.1 cm). Changes in secondary outcome measures are also reported.

The Breathlessness Intervention Service appears to reduce distress due to breathlessness among patients with advanced COPD. A Phase III fully-powered randomized controlled trial is warranted.