The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.

This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.

Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.

To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

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.

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.

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.

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.

Knowledge of symptom prevalence and adequate assessment of such symptoms at the end of life is important in clinical practice. We determined the frequency and severity of symptom distress and delirium using the Edmonton Assessment Scale (ESAS) and the Memorial Delirium Assessment Scale (MDAS) and evaluated the clinical utility of the Nursing Delirium Screening Scale (Nu-DESC) as scored by a caregiver as a screening tool for delirium.

We conducted a secondary analysis of the data from a previous randomized controlled trial on parenteral hydration at the end of life of patients admitted to home hospice. Only patients that had assessments within the last week of life were included. We collected the ESAS, MDAS, Nu-DESC, and Richmond Agitation Sedation Scale (RASS) results. The sensitivity and specificity of the Nu-DESC were then calculated.

Some 78 of 261 patients were included in our study, 62 (80%) of which had moderate-to-severe symptoms corresponding to an ESAS score >4. These symptoms include: 73 (94%) anorexia, 63 (81%) fatigue, 56 (73%) drowsiness, 58 (75%) decreased well-being, and 39 (51%) pain. Delirium was diagnosed in 34 (44%) of patients using the MDAS. The Nu-DESC was found to have a sensitivity of 35%, a specificity of 80%, a positive predictive value (PPV) of 58%, and an negative predictive value (NPV) of 61% when used by caregivers.

Hospice patients at the end of life have a high rate of symptom distress and delirium. The Nu-DESC is not a reliable tool for screening delirium when scoring is conducted by a caregiver. Our study illustrates the need for routine use of assessment tools to improve care.

The purpose of this article was to review the literature regarding diagnosis, pathogenesis, and treatment of post-traumatic stress disorder (PTSD) associated with cancer.

We surveyed studies examining the validity of diagnostic scales commonly used to measure PTSD in patients with cancer. Neurobiological underpinnings of PTSD and cancer, including inflammation as the physiological mechanism linking these comorbidities, were examined. Psychopharmacologic and psychotherapeutic treatment of PTSD symptoms in patients with cancer was reviewed. In addition, potential drug–drug interactions between psychotropic medications commonly used to treat PTSD and anti-cancer agents were reviewed.

Multiple studies demonstrated the validity of the PTSD Checklist Civilian Version (PCL-C) in diagnosing PTSD in patients with cancer. Research has shown that PTSD as defined in DSM-IV appears to be a better model for conceptualizing distress in patients with cancer than a generalized “distress” model. Epidemiologic studies have shown an increased incidence of PTSD associated with cancer; however, literature regarding characteristics of PTSD in patients with cancer is cross-sectional in nature.

Future research focusing on longitudinal, prospective studies to identify patients at risk, determine causal or aggravating factors, and develop preventive interventions is needed. Further study of PTSD in patients with cancer may help increase recognition of this disorder, optimize treatment, and enhance the quality of life of these individuals.

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.

Adolescents are considered the group most susceptible to negative psychosocial outcomes when faced with a parent's illness. However, there has been extremely limited research on the adolescent's adjustment to advanced parental cancer. The aim of our study was to gain understanding of the experiences of adolescents, in their own words, to gather pilot data about the needs of this population that will be valuable in developing interventions for adolescents facing parental cancer.

A hermeneutic phenomenological approach was applied using in-depth semistructured interviews to inquire about adolescents' experiences. Some 10 adolescents (7 males, 3 females) aged 14–17 were interviewed.

Four essential themes about adolescents living with a parent's advanced cancer emerged from the analysis: “life interrupted,” “being there,” “managing emotions,” and “positives prevail.” These findings underscore the significant impact an advanced cancer diagnosis can have on a family unit and suggest that the experience may also have the potential of creating opportunities for growth and well-being. Our findings reinforce previous results that advocate for the importance of family and peer support, positive attitude, and open communication when a family is coping with advanced parental cancer.

Understanding how adolescents gain strength from their relationships with family and peers offers healthcare professionals an opportunity to have services and strategies in place to foster these relationships.

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.

Psychosocial interventions in families of children with cancer are considered an effective way of empowering family members to tackle the complex hurdles they face. The ability of parents to develop adaptive coping strategies during the child's treatment is not only important to their own mental and physical health, but also to their child's well-being and long-term adjustment with the disease.

The aim of this review was to evaluate the existing literature for the period from 2009 to 2017 on psychosocial interventions targeting families of children with cancer. We searched the PubMed database using the following combination of keywords: “cancer AND children AND (intervention OR training) AND (mothers OR primary caregivers OR parents OR fathers OR siblings).”

After careful evaluation of 995 papers, 17 full-text papers were found to match our criteria (12 randomized controlled trials and 5 quasi-experimental studies). The quality of the studies was assessed using the Delphi score questionnaire, and the score of the reviewed studies ranged from 3 to 5. The findings suggest that most interventions reduced distress and improved coping strategies among participants. Interventions, mainly cognitive behavioral therapy and problem-solving skills training targeting maternal distress, were associated with improved adjustment outcomes in mothers of children with cancer.

Psychosocial interventions are helpful, and efforts should be made to promote them in a larger scale. Protocols should be implemented to ensure that all parents benefit. Computer-assisted methods may provide additional benefit by improving cancer-related knowledge and cancer-related communication.

To assess the effectiveness of home-based palliative care (HBPC) on reducing hospital visits and whether HBPC lowered health care cost.

We searched six bibliographic databases (Embase (Ovid); Cochrane Central Register of Controlled Trials; Medline (Ovid); PubMed; Web of Science Core Collection; and, CINAHL) until February 2019 and performed a narrative synthesis of our findings.

Of the 1,426 identified references, 21 articles based on 19 unique studies met our inclusion criteria, which involved 92,000 participants. In both oncological and non-oncological patients, HBPC consistently reduced the number of hospital visits and their length, as well as hospitalization costs and overall health care costs. Even though home-treated patients consumed more outpatient resources, a higher saving in the hospital costs counterbalanced this. The reduction in overall health care costs was most noticeable for study periods closer to death, with greater reductions in the last 2 months, last month, and last two weeks of life.

Stakeholders should recognize HBPC as an intervention that decreases patient care costs at end of life and therefore health care providers should assess the preferences of patients nearing the end-of-life to identify those who will benefit most from HBPC.

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.

Difficulties with diagnosis and aggressive, long-term treatment may result in lower quality of life (QOL), including high levels of anxiety, depression, and uncertainty, greater symptom distress, and lower overall QOL among women with avarian cancer. The purpose of this study was to describe demographic, clinical, and other risk factors associated with compromised QOL among women who have undergone surgery for avarian malignancies.

Subjects were recruited to participate in a clinical trial that tested a specialized nursing intervention addressing psychological and physical care among women post-surgical for avarian cancer. QOL was measured using five standardized self-report measures: the State-Trait Anxiety Scale (SAS), the Center for Epidemiological Studies Depression Scale (CES-D), the Mishel Uncertainty in Illness Scale (MUIS), the Symptom Distress Scale (SDS), and the Short-Form Health Survey (SF-12). Baseline data were collected while women were hospitalized following surgery.

The sample (n=145) included women with avarian cancer (58%) and other cancers metastasized to the avaries and abdomen (42%). Mean scores on the measures were consistent with or higher than previously reported means for similar populations. Women reporting the lowest QOL were more likely to be younger, more educated, and have early stage disease.

Women who have undergone surgery for ovarian malignancies have psychological needs that are often considered secondary to physical needs. Interventions should include routine screening for distress and referral to appropriate psychological and social services, thereby facilitating quality cancer care.

The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.

Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.

Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was “wrong.” Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.

Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.

The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease.

This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.

The high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).

This study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

Many cancer patients use a wide variety of techniques to improve their physical and mental well-being, including relaxation therapy and, specifically, Progressive Muscle Relaxation (PMR). However, there is no strong evidence that supports the efficacy of this technique.

Our aim was to review the evidence regarding the use of PMR as a supportive intervention for cancer patients undergoing chemotherapeutic treatment.

Six databases were electronically searched: AMED, the Cochrane Library, MEDLINE, PsychINFO, Scopus, and the Web of Science. After removing duplicates, 700 publications were screened and 57 identified as potentially relevant. The flow of information from record identification to study inclusion was conducted in accordance with the PRISMA statement. Original articles published in peer-reviewed journals that studied the use of PMR as an intervention, were randomized or included a matched control group, and that included patients receiving chemotherapy were included. Studies that combined PMR with other interventions were excluded. The methodological quality of included trials was assessed using the Jadad Scale and the CONSORT guidelines.

A total of 5 of the 57 papers fulfilled the preset criteria and were included in our systematic review. Our findings indicate that PMR might improve comfort and reduce the anxiety levels and side effects caused by chemotherapy, with the exception of vomiting. Nonetheless, the quality of all the included studies was extremely low.

There is evidence that PMR might have a few benefits for patients undergoing chemotherapy. Still, the small number of studies included and their poor quality limit the significance of our results. Despite the fact that pharmaceutical approaches for controlling side effects might be reaching their full potential and that there might be further usefulness for such integrative treatments as PMR, the need to run more high-quality trials testing the efficacy of this technique is warranted before suggesting its adoption as part of standard cancer care.