BACKGROUND: In the Netherlands, Foundation De Einder offers counselling to people who wish to be able to self-determine the timing and manner of their end of life.
AIM: This study explores the experiences with counselling that counselees receive(d) from counsellors facilitated by Foundation De Einder.
METHODS: Open coding and inductive analysis of in-depth interviews with 17 counselees.
RESULTS: Counselling ranged from solely receiving information about lethal medication to combining this with psychological counselling about matters of life and death, and the effects for close ones. Counselees appreciated the availability of the counsellor, their careful and open attitude, feeling respected and being reminded about their own responsibility. Some counselees felt dependent on the counsellor, or questioned their competency. Most counselees collected lethal medication. This gave them peace of mind and increased their quality of life, but also led to new concerns. Few were inclined to use their self-collected medication. Counselling contributed to thinking about if, when and how counselees would like to end their life.
CONCLUSION: Having obtained means to end their lives can offer people feelings of reassurance, which can increase their quality of life, but can also give rise to new concerns. Next to providing information on (collecting) lethal medication, counsellors can play an important role by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of counselling are also relevant for physicians taking care of patients who wish to self-determine the timing and manner of their end of life.
OBJECTIVE: Interventions are needed to improve mental health (i.e., depression, anxiety) and palliative care (i.e., symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer.
METHODS: An interprofessional study team used the Ecological Validity Model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated Puente para Cuidar intervention.
RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of Puente para Cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates.
CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.
Grief and loss are universal experiences for all individuals and communities. The experience of a loss due to death and the bereavement process to follow are influenced by an individual's religious values and beliefs. In this article, we discuss the Sikh bereavement process in the United States. We provide brief personal narratives as exemplar case studies, highlight religious and cultural factors, and explain potential challenges of bereavement. Finally, we discuss implications for mental health clinicians and other providers of services that surround death and dying.
The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.
Physician aid-in-dying (PAD) is now legalized in more than half a dozen states across the United States yet remains controversial among health care providers and the general public. Previous studies have described physicians' and nurses' experiences with and attitudes about PAD; however, there is no data about PAD in the context of genetic counseling. This study explores genetic counselors' experiences, understanding, training, and perspectives about PAD. Fifteen participants were recruited to complete semistructured telephone interviews. Five participants had received patient inquiries about PAD. Most participants (n = 10) did not feel prepared to discuss PAD with patients and felt that they did not have adequate knowledge to answer patient questions about the practice. Participants described how the unique training, skills, and experiences of genetic counselors could be beneficial for discussing PAD with patients, in comparison to other providers. All participants supported training for genetic counselors about PAD, with many suggesting integration with education about palliative care and end-of-life planning. This is the first study to investigate PAD in the context of genetic counseling. Genetic counselors have had patients ask questions about PAD, want education and access to resources about PAD, and believe they can provide important support and guidance to patients considering PAD in some genetic counseling contexts.
PURPOSE: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.
METHOD: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.
RESULTS: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.
CONCLUSION: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
Pediatric consultation-liaison clinicians are well positioned to provide support, guidance, and systemic recommendations about how to help medical clinicians cope with the stresses of working with dying children. Interventions to support sustainability in this work need to occur at the institutional and team-based levels as well as in individual practice. Shared clinical work around challenging cases provides opportunities to engage with medical clinicians about their difficult experiences and provide reflection and support. Psychiatry services may also be in a role of advocating for institutionally based interventions that can help their medical colleagues.
Although no standardized definition exists, transfusion dependence (TD) usually describes patients receiving regular platelet and/or red blood cell (RBC) transfusions more frequently than every eight weeks due to persistently low counts. Myelodysplastic syndrome, myeloproliferative neoplasms, and leukemias are most commonly associated. Transfusion thresholds have been subjects of debate, vary by population, and should answer the goals of care become accustomed to basing the need for transfusion on a diagnostic threshold (e.g., hemoglobin >7), rather than a specific symptom. As TD patients near the end of life, they often face emotionally wrought decisions about the continued role of transfusions.
Despite the high prevalence of suicide among people with disabilities, little research has explored suicide in the context of the vocational rehabilitation (VR) system. We analyzed the responses of 27 VR counselors who responded to an open-ended qualitative prompt regarding their experiences with suicide training and competency. Key themes included a desire for more training on suicide and the experience of seeking and receiving suicide training and experience outside of VR. Responses also underscored the heavy emotional impact of working with suicidal clients, especially when one feels unprepared to do so. These results suggest that it is important to provide VR counselors with resources and training for addressing suicide in their client populations.
OBJECTIVE: To investigate experienced and preferred prenatal counseling among parents of extremely premature babies.
METHODS: A Dutch nationwide, multicenter, cross-sectional study using an online survey. Surveys were sent to all parents of extremely premature babies born between 2010 and 2013 at 24+0/7-24+6/7 weeks of gestation.
RESULTS: Sixty-one out of 229 surveys were returned. A minority (14%) had no counseling conversation. Conversations were done more often by neonatologists (90%) than by obstetricians (39%) and in 37% by both these experts. Supportive material was rarely used (19%). Mortality (92%) and short-term morbidity (88%) were discussed the most, and more frequently than long-term morbidity (65%), practical items (63%) and delivery mode (52%). Most decisions on active care or palliative comfort care were perceived as decisions by doctor and parents together (61%). 80% felt they were involved in decision-making. The preferred way of involvement in decision-making varied among parents.
CONCLUSION: The vast majority of parents were counseled: mostly by neonatologists, and mainly about mortality and short-term morbidity. Parents wanted to be involved in the decision-making process but differed on the preferred extent of involvement. Practice implications Understanding of shared decision-making may contribute to meet the various preferences of parents.
CONTEXT: Hospital-based palliative care consultation teams (PCCTs) are rapidly being disseminated throughout Japan. The roles of PCCTs have changed over the past decade, particularly with the introduction of a modified national cancer care act to promote early palliative care and integrated oncology and palliative care.
OBJECTIVES: This study aimed to develop a consultation team standard for hospital-based palliative care in Japan.
METHODS/DESIGN: We developed a provisional standard based on literature review, and used a modified questionnaire-based Delphi method. Our Delphi panel comprised 20 experts selected from all relevant disciplines.
RESULTS: All experts selected responded to the surveys over all rounds, and 14 of the 20 participated in the panel meeting. In the first-round, 79 of 109 statements were judged to be appropriate, and 30 of 109 led to disagreements. 16 of those 30 statements underwent minor revision, 1 was divided into two statements, and 13 remained unchanged. We then added 6 statements based on a discussion among participants and authors. Additionally, based on comments from an external reviewer, we revised the standard, resulting in 4 statements being combined into 2 for a new total of 114 statements. In the second-round, 108 of 114 statements were judged to be appropriate, and in the third-round, none of the 6 controversial statements were judged to be appropriate. The final version comprised 108 statements.
CONCLUSION: We developed a standard for PCCTs in Japanese cancer hospitals. This standard provides a useful guide for clinical activities and a tool to evaluate quality of palliative care.
Endometrial cancer incidence has been increasing over the last two decades, likely due to the obesity epidemic. The majority of these cancers are confined to the uterus at diagnosis and can be cured with surgery. Overall, five-year disease-specific survival is about 80%, but some patients have locally advanced or metastatic disease that is not amenable to control with radiation and/or chemotherapy. Disease-related symptoms are most common in this subset of patients with endometrial cancer, although women with early-stage disease may also experience side effects related to surgical menopause or adjuvant treatment. In recent years, professional societies have been increasingly vocal about the importance of incorporating palliative care early in a patient's disease course. As these calls increase, palliative care clinicians will likely increasingly comanage patients with advanced or recurrent endometrial cancer. We brought together a team of gynecologic oncology and palliative care experts to assemble practical tips for the care of women with endometrial cancer. In this article, we use a "Top 10" format to highlight issues that may help palliative care physicians understand a patient's prognosis, address common misconceptions about endometrial cancer, and improve the quality of shared decision making and goals of care discussions.
Advance care planning (ACP) does not readily occur in medical settings and often gets missed. Older Latinos need ACP information to encourage advance directive (AD) completion indicating preferences for end-of-life (EOL) care.
OBJECTIVE: To explore the experiences with counseling using motivational interviewing (MI) techniques and social workers to encourage ACP communication among older Latinos with advance chronic diseases. This study describes stages of readiness to plan for EOL care.
DESIGN: We conducted a qualitative study with older Latinos who participated in a community-based intervention in Southern New Mexico.
METHODS: Participants in the intervention were selected because they received ACP education plus counseling involving MI to address resistance to ACP. Motivational interviewing counseling involved the following: (1) engaging in structured dialogue about ACP, (2) using and completing AD documentation, (3) encouraging ACP communication with providers and families, and (4) applying AD information into actionable behavior. We utilized a constant comparative method and thematic analysis to explore the meaning of older Latinos' experiences with MI counseling and stages of change.
RESULTS: Participants (n = 32) were mostly women (74.3%), half born in the United States and half from Mexico in the United States on average for 31.75 (standard deviation 16.22) years. Many had less than sixth grade education (31.3%) or had not completed high school (21.9%). Key themes indicate the following stages of change: (1) precontemplation, (2) contemplation, (3) preparation, (4) ACP action, and (5) maintenance.
CONCLUSION: This study contributes to the literature by identifying areas for adaption to enhance understanding and increase information to ultimately achieve the completion of ACP among Latinos.
BACKGROUND: Although general practitioners (GPs) are among the preferred contact persons for discussing end-of-life issues including advance directives (ADs), there is little data on how GPs manage such consultations.
OBJECTIVES: This postal survey asked German GPs about their counselling for end-of-life decisions.
METHODS: In 2015, a two-sided questionnaire was mailed to 959 GPs. GPs were asked for details of their consultations on ADs: frequency, duration, template use, and whether they have own ADs. Statistical analysis evaluated physician characteristics associated with an above-average number of consultations on AD.
RESULTS: The participation rate was 50.3% (n = 482), 70.5% of the GPs were male; the average age was 54 years. GPs had an average of 18 years of professional experience, and 61.4% serve more than 900 patients per three months. Most (96.9%) GPs perform consultations on living wills (LW) and/or powers of attorney (PA), mainly in selected patients (72.3%). More than 20 consultations each on LWs and PAs are performed by 60% and 50% of GPs, respectively. The estimated mean duration of consultations was 21 min for LWs and 16 min for PAs. Predefined templates were used in 72% of the GPs, 50% of GPs had their ADs. A statistical model showed that GPs with ADs and/or a qualification in palliative medicine were more likely to counsel =20 patients per year for each document.
CONCLUSION: The study confirmed that nearly all German GPs surveyed provide counselling on ADs. Physicians with ADs counsel more frequently than those without such documents.
BACKGROUND: In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care.
METHODS: Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals.
RESULTS: Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained.
CONCLUSION: This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.
OBJECTIVE: We sought to explore the relationship between counseling quality, measured by shared decision making and decision satisfaction, and psychological outcomes (anxiety, grief, and posttraumatic stress) after second-trimester abortion for pregnancy complications.
STUDY DESIGN: We conducted a cross-sectional study of women who underwent second-trimester abortion for complications. We recruited participants from Facebook and online support groups and surveyed them about counseling experiences and psychosocial issues. We used multivariate linear regression to evaluate relationships between counseling quality and psychological outcomes.
RESULTS: We analyzed data from 145 respondents. Shared decision making and decision satisfaction scores were positively and strongly correlated in bivariate analysis (r=0.7, p<0.0001), as were posttraumatic stress and grief scores (r=0.7, p<0.0001). In the adjusted analysis, higher decision satisfaction was associated with lower grief and posttraumatic stress scores (p=0.02 and p=0.01, respectively) and higher shared decision making was associated with lower posttraumatic stress scores (p=0.01).
CONCLUSIONS: Decision satisfaction and shared decision making have a positive effect on psychological outcomes after second-trimester abortion for pregnancy complications. Counseling quality may be especially important in this setting given the sensitive nature of decisions regarding pregnancy termination for complications.
IMPLICATION: These results highlight the importance of patient-centered counseling for women seeking pregnancy termination.
BACKGROUND: Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases.
STUDY DESIGN: Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey.
RESULTS: 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care.
CONCLUSION: The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.
OBJECTIVE: The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).
METHOD: Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.
Result: A total of four global support needs emerged: "more personal time", "assistance in applying for resources", "counseling", and "peer contact". Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.
Significance of results: ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers' support needs.