We describe the experience of managing the dying moments of a nursing home patient via telemedicine.

Ms. C was a 92-year-old frail woman with multiple medical problems, living in a nursing home. She spent her final days in the nursing home, choosing not to be transferred to an acute hospital should she turn ill. On the last day of her life, she complained of acute-onset breathlessness and agreed to a teleconsultation with the hospital physicians involved in acute care.

During the telemedicine consultations (tele-consultation) process, Ms. C's condition deteriorated rapidly as she entered the dying phase of life. She died peacefully soon after, in the presence of the nurse, the pastoral care worker, and the physician who was conducting the tele-consultation session 30 km away. The family was not present at the patient's bedside when she died. They were, however, relieved to know and were appreciative of the fact that a physician had been “present” during the patient's death.

Telemedicine could act as an effective communication tool in end-of-life care, between the patient and carers, up to the last moment of life.

The aims of the present study were (1) to describe the prevalence of psychosocial distress in palliative care patients living at home and the related factors, and (2) to test implementation of the Distress Thermometer (DT) within a home-based palliative care service.

Ours was a 15-month prospective study beginning in September of 2013 in western Germany with consecutive patients cared for by a home care palliative care service. The research was implemented during the first visit by the home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the Distress Thermometer (DT), a Problem List (PL), and a structured questionnaire for evaluation were applied and sociodemographic and medical data collected.

A total of 103 patients (response rate = 70%; mean age = 67; female = 54%; married = 67%; oncological condition = 91%; Karnofsky Performance Status [KPS] score 0–40 = 34%, 50–70 = 60%, >80 = 6%) were included. The incidence of distress (DT score ≥4) was 89.3% (mean = 6.3 ± 2.5). No statistical association was found between level of distress and sociodemographic or medical factors. The five most reported problems were “fatigue” (90%), “getting around” (84%), “eating” (63%), “bathing/dressing” (60%), and “sleep” (57%). The number of problems reported correlated with level of distress (ρ = 0.34). The DT was comprehensible, and 80% considered its completion as unremarkable, while 14% found it “relieving.”

A significant proportion of patients treated at home reported symptoms of distress. The most oft-mentioned problems were physical and emotional in nature. The findings of our study highlight the importance of creating new concepts and structures in order to address the psychosocial needs of patients in home care with palliative needs.

Breathlessness is a subjective symptom, which makes it difficult to define and understand. The aim of the present study was to illuminate how patients suffering from breathlessness experience their everyday life.

The study was a qualitative study, and the focus of the analysis was the patients' descriptions of their experiences of breathlessness using a diary with two unstructured questions for a period of 7 consecutive days. Sixteen participants: 7 men, mean age 65 ± 7 (range 55–73 years old), and 9 women, mean age 65 ± 9 (range 50–72 years old) participated in the study.

Two themes emerged from the analysis: 1) Impaired quality of life and 2) symptom tolerance and adaptation. The theme “impaired quality of life” included the categories limited physical ability, psychological burdens, and social life barriers. The theme “symptom tolerance and adaptation” included importance of health care, social support, hobbies and leisure activities, and coping strategies.

The findings in our study showed that patients, in spite of considerable difficulties with shortness of breath, found relief in several types of activities, in addition to drug therapy. The result indicates that the “biopsychosocial model” is an appealing approach that should be discussed further to gain a better understanding of breathlessness.

Many people experience an ongoing relationship with a deceased loved one. This is called a “continued bond.” However, little is known about the adolescent experience with continued bonds once a parent has died. This study describes three ways that adolescents continue their relationship with a parent after that parent's death.

Individual semistructured interviews were conducted with nine adolescent children of deceased hospice patients from a large hospice in northeastern Ohio as part of a larger grounded-theory study. The interviews were audiotaped, transcribed verbatim, and analyzed using a conventional content analysis approach.

Adolescents continued their bonds with deceased parents in one of three ways: experiencing encounters with the deceased parent, listening to the inner guide of the parent, and keeping mementos to remind them of the parent.

The ways that the adolescents continued their bond with a deceased parent assisted them in creating meaning out of their loss and adjusting to life without that parent. Our results can be used by health professionals and parents to help adolescents after a parent has died.

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.

Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life.

A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits.

Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance.

Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Hospice patients often struggle with loss of meaning, while many experience meaningful dreams. The purpose of this study was to conduct a preliminary exploration into the process and therapeutic outcomes of meaning-centered dream work with hospice patients.

A meaning-centered variation of the cognitive–experiential model of dream work (Hill, 1996; 2004) was tested with participants. This variation was influenced by the tenets of meaning-centered psychotherapy (Breitbart et al., 2012). A total of 12 dream-work sessions were conducted with 7 hospice patients (5 women), and session transcripts were analyzed using the consensual qualitative research (CQR) method (Hill, 2012). Participants also completed measures of gains from dream interpretation in terms of existential well-being and quality of life.

Participants' dreams generally featured familiar settings and living family and friends. Reported images from dreams were usually connected to feelings, relationships, and the concerns of waking life. Participants typically interpreted their dreams as meaning that they needed to change their way of thinking, address legacy concerns, or complete unfinished business. Generally, participants developed and implemented action plans based on these interpretations, despite their physical limitations. Participants described dream-work sessions as meaningful, comforting, and helpful. High scores on a measure of gains from dream interpretation were reported, consistent with qualitative findings. No adverse effects were reported or indicated by assessments.

Our results provided initial support for the feasibility and helpfulness of dream work in this population. Implications for counseling with the dying and directions for future research were also explored.

People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs.

A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann–Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients.

Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006).

A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum.

In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement.

Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course.

of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient's death.

The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.

The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.

Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.

Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.

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.

Non-medical opioid use (NMOU) is a growing crisis. Cancer patients at elevated risk of NMOU (+risk) are frequently underdiagnosed. The aim of this paper was to develop a nomogram to predict the probability of +risk among cancer patients receiving outpatient supportive care consultation at a comprehensive cancer center.

3,588 consecutive patients referred to a supportive care clinic were reviewed. All patients had a diagnosis of cancer and were on opioids for pain. All patients were assessed using the Edmonton Symptom Assessment Scale (ESAS), Screener and Opioid Assessment for Patients with Pain (SOAPP-14), and CAGE-AID (Cut Down-Annoyed-Guilty-Eye Opener) questionnaires. “+risk” was defined as an SOAPP-14 score of ≥7. A nomogram was devised based on the risk factors determined by the multivariate logistic regression model to estimate the probability of +risk.

731/3,588 consults were +risk. +risk was significantly associated with gender, race, marital status, smoking status, depression, anxiety, financial distress, MEDD (morphine equivalent daily dose), and CAGE-AID score. The C-index was 0.8. A nomogram was developed and can be accessed at https://is.gd/soappnomogram. For example, for a male Hispanic patient, married, never smoked, with ESAS scores for depression = 3, anxiety = 3, financial distress = 7, a CAGE score of 0, and an MEDD score of 20, the total score is 9 + 9+0 + 0+6 + 10 + 23 + 0+1 = 58. A nomogram score of 58 indicates the probability of +risk of 0.1.

We established a practical nomogram to assess the +risk. The application of a nomogram based on routinely collected clinical data can help clinicians establish patients with +risk and positively impact care planning.

Despite treatment availability, many cancer patients experience severe pain. Although patient assessments of care are increasingly employed to evaluate quality of care, little is known about its association with cancer symptom burden. The objective of our study was to examine the association between patient-reported quality of care and pain severity in a nationally representative cohort of cancer patients.

Quality of care was measured in three domains: physician communication, care coordination/responsiveness, and nursing care. Quality scores were dichotomized as optimal versus nonoptimal. Pain was measured on a scale of 0 (least) to 100 (worst). We utilized multivariable linear regression to examine the association between patient-reported quality of care and pain severity.

The analytic sample included 2,746 individuals. Fifty and 54% of patients, respectively, rated physician communication and care coordination/responsiveness as nonoptimal; 28% rated nursing care as nonoptimal. In adjusted models, rating physician communication as nonoptimal (versus optimal) was associated with a 1.8-point higher pain severity (p = 0.018), and rating care coordination/responsiveness as nonoptimal was associated with a 2.2-point higher pain severity (p = 0.006).

Patient-reported quality of care was significantly associated with pain severity, although the differences were small. Interventions targeting physician communication and care coordination/responsiveness may result in improved pain control for some patients.

Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.

Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.

There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).

This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

Caregivers have a great role in palliative care. Considering the difficult process of palliative care, the caregiver undertakes an extra burden with the responsibility of the patient. This study was carried out to evaluate the care burden and preparedness of caregivers who provide care for palliative care patients.

This study was conducted in the palliative care unit of a state hospital in Turkey between January and May 2019. No sample was selected in the study, and the study was carried out with individuals who were hospitalized in the palliative care unit and who volunteered to participate in the study between the specified dates. The data were collected with Patient Relative Questionnaire Form, Burden Interview, and Preparedness for Caregiving Scale.

The average Burden Interview score was found as 33.6, SD 13.03 in the study. Patient relatives perceived the patients they cared for as a burden at moderate levels. The Preparedness for Caregiving score average was found as 18.55, SD 6.83. It was found that patient relatives were moderately prepared to undertake the role of caregiver. It was found that care burden decreased as preparedness for caregiving increased and burden increased as preparedness for caregiving decreased (p = 0.001).

As a result of the study, it was found that caregivers of palliative patients had the moderate levels of care burden and preparedness for caregiving. It was found that as the preparedness levels of caregivers increased, their burdens decreased. Accordingly, it is important that nurses will plan nursing interventions by considering the factors that affect the care burden and preparedness of caregivers.