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.

Demoralization is an existential distress syndrome that consists of an incapacity of coping, helplessness, hopelessness, loss of meaning and purpose, and impaired self-esteem. It can affect cancer patients, and the Demoralization Scale is a valid instrument to assess it. The present study aimed to investigate the prevalence of demoralization in end-of-life cancer patients and its associations with the medical and psychosocial variables. In addition, the latent dimensions of demoralization emerging in this distinctive population were explored.

The study is cross-sectional. The sample consisted of 235 end-of-life cancer patients with a Karnofsky performance status (KPS) lower than 50 and a life expectancy of a few weeks. For each patient, personal and medical data was gathered by a palliative physician and a set of validated rating scales, assessing demoralization, anxiety, depression, physical symptoms, pain, spiritual well-being, and dignity, was administered by a psychologist during the first consultation.

Sixty-four participants (27.2%) had low demoralization, 50.2% (n = 118) had medium demoralization, and 22.6% (n = 53) had high demoralization. Factor analysis evidenced a five-factor solution that identified the following demoralization factors: Emotional Distress and Inability to Cope, Loss of Purpose and Meaning, Worthlessness, Sense of Failure, and Dysphoria. All the considered variables were associated with demoralization, except for pain, nausea, breathing problems, and sociodemographic and clinical variables.

End-of-life cancer patients showed higher levels of demoralization than has been reported in other studies with advanced cancer. These data could suggest that demoralization could increase in proximity to death and with impaired clinical condition. In particular, the five demoralization dimensions that emerged could represent the typical concerns around which the syndrome evolves in end-of-life cancer patients. Finally, spiritual well-being could play a protective role with respect to demoralization.

The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.

To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.

Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.

This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia.

This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed.

Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships.

An understanding from bereaved caregivers’ perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).

The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.

A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.

The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Individuals with life-threatening illness often engage in some form of spirituality to meet increased needs for meaning and purpose. This study aimed to identify the role of spirituality in persons who had reported positive, life-transforming change in relation to life-threatening cancer or cardiac events, and to connect these roles to palliative and supportive care.

A purposive sample of 10 cardiac survivors and 9 cancer survivors was recruited. Once the participants had given informed consent and passed screening in relation to life-transforming change and distress, they engaged in a semistructured one-hour qualitative interview on the theme of how their life-transforming change occurred in the context of their life-threatening illness. In the present article, our phenomenological analysis focuses on participants' references to purpose and meaning in their lives, with particular attention to the role and context of participants' spirituality.

Participants mentioned spirituality, meaning, and purpose in many contexts, including connecting with family and friends, nature, art, music, and sometimes creating a relationship with God. Participants often accessed spirituality by enhancing connections in their own lives: with a higher power, people, their work, or themselves. These enhanced connections gave participants greater meaning and purpose in their lives, and substantially helped participants to adjust to their life-threatening illnesses.

Understanding the roles and contexts of spirituality among patients with a life-threatening illness allows us to develop better palliative and supportive care plans. Spiritually oriented supportive care may include support groups, yoga, meditation, nature, music, prayer, or referral to spiritual or religious counselors. A quantitative scale is needed to help healthcare clinicians assess the spiritual and coping needs of individuals with life-threatening illness.

Most research examining the impact of patients seeking online health information treats internet information homogenously, rather than recognizing that there are multiple types and sources of available information. The present research was conducted to differentiate among sources and types of internet information that patients search for, intend to discuss with their doctors, and recall discussing with their doctors, and to determine how accurate and hopeful patients rate this information.

We surveyed 70 breast cancer patients recruited from the waiting rooms of breast medical oncology and surgery clinics. The main variables in the study were as follows: (1) the sources and types of online information patients have read, intended to discuss, and actually discussed with their doctors, and (2) how accurately and hopefully they rated this information to be.

Patients read information most frequently from the websites of cancer organizations, and most often about side effects. Patients planned to discuss fewer types of information with their doctors than they had read about. They most often intended to discuss information from cancer organization websites or WebMD, and the material was most often about alternative therapies, side effects, and proven or traditional treatments. Some 76.8% of total participants rated the information they had read as very or somewhat accurate, and 61% rated the information they had read as very or somewhat hopeful.

Internet information varies widely by source and type. Differentiating among sources and types of information is essential to explore the ways in which online health information impacts patients' experiences.

The aim of this review was to provide a systematic overview of knowledge on how advanced cancer in a parent impacts the healthy parent's role in a family with children aged 6–12 years, and the types of help that they require in order to cope. Despite the large number of families living with a parent affected by cancer, the literature is limited concerning the needs and outcomes for the healthy parents and their need for support in managing their children's needs, when the partner is seriously ill or is in the palliative phase of cancer.

Comprehensive literature searches were undertaken by systematically searching for qualitative articles published during the period 1989–2009. The quality assessment was evaluated using a predefined “checklist to assess qualitative research.”

Seven articles met our eligibility criteria. Four distinct themes emerged that describe the healthy parent's role in the family, whose life is now characterized by uncertainty and who is attempting to maintain a balance between the needs of their children, the patient, and themselves: (1) new roles without a script, (2) attempting to maintain a safe and normal life, (3) feeling alone even within the family, and (4) support to help young family members.

The present review provides new knowledge and insight into how healthy parents manage the challenges in parenting young children, coping with their everyday lives, and taking on new roles when their partner has advanced cancer or is dying. The healthy parent cannot balance the needs of all family members. To reach the goals of palliative care, nurses and other health professionals are encouraged to offer the patient, the healthy parent, and the children practical and emotional support.

Several studies have successfully tested psychosocial interventions in palliative care patients. Counseling is the technique most often employed. Dignity therapy (DT) has recently emerged as a tool that can be utilized to address patients' needs at the end of life. The aims of our study were to examine the effects of DT and counseling and to offer useful information that could be put into practice to better meet patients' needs.

We developed a pilot randomized controlled trial at the Home Care Unit of the General University Hospital of Valencia (Spain). Some 70 patients were assigned to two therapy groups. The measurement instruments employed included the Patient Dignity Inventory (PDI), the Hospital Anxiety and Depression Scale (HADS), the Brief Resilient Coping Scale (BRCS), the GES Questionnaire, the Duke–UNC-11 Functional Social Support Questionnaire, and two items from the EORTC Quality of Life C30 Questionnaire (EORTC–QLQ–C30).

The results of repeated-measures t tests showed statistically significant differences with respect to the dimensions of dignity, anxiety, spirituality, and quality of life for both groups. However, depression increased in the DT group after the intervention, and there were no differences with respect to resilience. Therapy in the counseling group did not negatively affect depression, and resilience did improve. When post-intervention differences between groups were calculated, statistically significant differences in anxiety were found, with lower scores in the counseling group (t(68) = –2.341, p = 0.022, d = 0.560).

Our study provided evidence for the efficacy of dignity therapy and counseling in improving the well-being of palliative home care patients, and it found better results in the counseling therapy group with respect to depression, resilience, and anxiety.

Tentative results from a pilot study showed that patients with advanced cancer were willing and able to take part in a group exercise intervention. Limited knowledge exists, though, about the meaning and significance of such programs. The purpose of the present study was to understand the meaning of such an intervention for the individual participant and thereby to provide knowledge for shaping future clinical practice.

Thirty-four palliative cancer patients with a life expectancy of less than 1 year completed a 6-week group exercise program. Five randomly selected individuals were interviewed 7 months after completion. Results from a self-report evaluation questionnaire identified relevant themes that formed the basis of an interview guide. These were addressed in a semistructured interview. Verbatim transcripts were analyzed with a phenomenological–hermeneutical approach.

Two main themes emerged from the interviews: (1) perceptions of the group and (2) a secure and caring setting for the group. Themes identified regarding perception of the group were a sense of belonging and commitment. Themes identified regarding a secure and caring setting for the group were a life-empowering group as a setting for enhancing coping, the qualifications of those who led the group, and a public gym as an unsuitable setting.

Our study indicates that an individually adjusted group exercise program, with competent leaders, can provide a setting to enhance psychological well-being in cancer patients with life expectancy below 1 year. Small sample size, however, limits the possibility to generalize the findings.

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.

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Following the loss of a loved one to cancer, a significant subset of bereaved family members are at heightened risk for mental and physical health problems; however, these family members often “fall through the cracks” of the healthcare system. A brief, clinically useful self-report bereavement risk-screening tool could facilitate more effective identification of family members in need of psychosocial support before and after a cancer loss. Thus, the purpose of this study was to develop and refine the Bereavement Risk Inventory and Screening Questionnaire (BRISQ), a self-report bereavement screening tool, and to assess its utility using feedback from bereavement experts.

Quantitative and qualitative feedback from a panel of 15 clinical and research experts in bereavement was obtained through an online survey to identify the most clinically useful items and understand expert opinion on bereavement screening.

The qualitative and quantitative feedback were synthesized, resulting in a 22% reduction of the item pool. While there was a general consensus between experts on the most clinically useful risk factors for bereavement-related mental health challenges and on the utility of screening, they also offered feedback on language and formatting that guided substantial revisions to the BRISQ.

These findings were utilized to refine the BRISQ in preparation for a second study to obtain family member feedback on the measure. By incorporating both expert and family member feedback, the intention is to create a screening tool that represents top clinical and research knowledge in bereavement in a way that effectively addresses barriers to care.

A systematic review was conducted in order to explore the effectiveness of communication-skills training interventions in end-of-life care with noncancer acute-based healthcare staff.

Articles were included if they (1) focused on communication-skills training in end-of-life/palliative care for noncancer acute-based staff and (2) reported an outcome related to behavior change with regard to communication. Sixteen online databases were searched, which resulted in 4,038 potential articles. Screening of titles left 393 articles that met the inclusion criteria. Abstracts (n = 346) and full-text articles (n = 47) were reviewed, leaving 10 papers that met the criteria for our review. All articles explored the effect of communication-skills training on aspects of staff behavior; one study measured the effect on self-efficacy, another explored the impact on knowledge and competence, and another measured comfort levels in discussing the end of life with patients/families. Seven studies measured a number of outcomes, including confidence, attitude, preparedness, stress, and communication skills.

Few studies have focused on end-of-life communication-skills training in noncancer acute-based services. Those that do have report positive effects on staff behavior with regard to communication about the end of life with patients and families. The studies varied in terms of the population studied and the health services involved, and they scored only moderately or weakly on quality. It is a challenge to draw a definite conclusion about the effectiveness of training interventions in end-of-life communication because of this. However, the findings from our review demonstrate the potential effectiveness of a range of training interventions with healthcare professionals on confidence, attitude, self-efficacy, and communication skills.

Further research is needed to fully explore the effectiveness of existing training interventions in this population, and evidence using objective measures is particularly needed. Ideally, randomized controlled trials or studies using control groups and longer follow-ups are needed to test the effectiveness of interventions.

The decision to receive palliative care at home brings with it the complexity of managing a medication regime. Effective symptom control is often directly linked to medication management and relies on access to medications at all times. In home-based palliative care practice, polypropylene syringes of medications may be drawn up and left in clients' domestic refrigerators for subcutaneous administration by carers to provide immediate relief for symptoms such as pain and nausea. However, although there has been some discussion in the literature about the need for ready access to medications for symptom control of clients receiving care in the community, the feasibility of this practice has received scant attention. The aim of this article is to present the carers' experiences of administering medications in this manner.

Semistructured interviews with 14 carers, who were administering medication in a home-based palliative care setting, were analyzed using qualitative methods to develop meaning units and themes.

Interviews revealed that this practice was highly valued. The carers willingly assumed the responsibility of medication administration, as it allowed the clients to remain at home where they desired to be. They could provide immediate symptom relief, which was of utmost importance to both the client and carer. The carers were empowered in their caring role, being able to participate in the care provided, rather than standing on the sidelines as helpless observers. Carers acknowledged the security and ethical issues associated with the presence of certain medications in the home and valued the 24-h telephone support that was available to them. After clients had died, the carers reflected on their involvement in care and felt a sense of pride and achievement from administering medications in this way because they had been able to care for their loved ones at home and fulfill their wish to die there.

These interviews confirm the feasibility of this practice, which is a component of quality end-of-life care.