BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share.
AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives.
DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions.
SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age.
RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions.
CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.
Purpose: To investigate difficulties doctors experience during life-sustaining treatment (LST) discussion with seriously ill patients and their families after enactment of the LST Decisions Act in February 2018.
Materials and Methods: A cross-sectional survey was conducted in a tertiary hospital in the Republic of Korea in August 2019. 686 doctors who care for seriously ill patients were given a structured questionnaire, and difficulties during the discussion were examined.
Results: 132 doctors completed the questionnaire. 85% answered they treat cancer patients. Most (86.4%) experienced considerable difficulties during LST discussions (mean score, 7.4 ± 1.6/10). The two most common difficulties were communication with patients and family and determining when to discuss LST. Two-thirds of doctors found direct discussions with the patient difficult and said they would initiate LST discussions only with family. LST discussions were actually initiated later than considered appropriate. When medically assessing whether the patient is imminently dying, 56% of doctors experienced disagreements with other doctors, which could affect their decisions.
Conclusion: This study found that most doctors experienced serious difficulties regarding communication with patients and family and medical assessment of dying process during LST discussions. To alleviate these difficulties, further institutional support is needed to improve the LST discussion between doctors, patients, and family.
Purpose: Visitor restrictions during the COVID-19 pandemic limit in-person family meetings for hospitalized patients. We aimed to evaluate the quantity of family meetings by telephone, video and in-person during the COVID-19 pandemic by manual chart review. Secondary outcomes included rate of change in patient goals of care between video and in-person meetings, the timing of family meetings, and variability in meetings by race and ethnicity.
Methods: A retrospective cohort study evaluated patients admitted to the intensive care unit at an urban academic hospital between March and June 2020. Patients lacking decision-making capacity and receiving a referral for a video meeting were included in this study.
Results: Most patients meeting inclusion criteria (N = 61/481, 13%) had COVID-19 pneumonia (n = 57/61, 93%). A total of 650 documented family meetings occurred. Few occurred in-person (n = 70/650, 11%) or discussed goals of care (n = 233/650, 36%). For meetings discussing goals of care, changes in patient goals of care occurred more often for in-person meetings rather than by video (36% vs. 11%, p = 0.0006). The average time to the first goals of care family meeting was 11.4 days from admission. More documented telephone meetings per admission were observed for White (10.5, SD 9.5) and Black/African-American (7.1, SD 6.6) patients compared to Hispanic or Latino patients (4.9, SD 4.9) (p = 0.02).
Conclusions: During this period of strict visitor restrictions, few family meetings occurred in-person. Statistically significant fewer changes in patient goals of care occurred following video meetings compared to in-person meetings, providing support limiting in-person meetings may affect patient care.
A patient's death can pose significant stress on the family and the treating anaesthetist. Anaesthetists' attitudes about the benefits of and barriers to attending a patient's funeral are unknown. Therefore, we performed a prospective, cross-sectional study to ascertain the frequency of anaesthetists' attendance at a patient's funeral and their perceptions about the benefits and barriers. The primary aim was to investigate the attitudes of anaesthetists towards attending the funeral of a patient. The secondary aims were to examine the perceived benefits of and barriers to attending the funeral and to explore the rate of bonds being formed between anaesthetists, patients and families. Of the 424 anaesthetists who completed the survey (response rate 21.2%), 25 (5.9%) had attended a patient's funeral. Of the participants, 364 (85.9%) rarely formed special bonds with patients or their families; 233 (55%) believed that forming a special bond would increase the likelihood of their attendance. Showing respect to patients or their families was the most commonly perceived benefit of attending a funeral. Participants found expression of personal grief and caring for the patient at the end-of-life and beyond beneficial to themselves and the family. Fear of their attendance being misinterpreted or perceived as not warranted by the family as well as time restraints were barriers for their attendance. Most anaesthetists had never attended a patient's funeral. Few anaesthetists form close relationships with patients or their families. Respect, expression of grief and caring beyond life were perceived benefits of attendance. Families misinterpreting the purpose of attendance or not expecting their attendance and time restraints were commonly perceived barriers.
Trial registration: ACTRN 12618000503224.
Physicians have a responsibility to discuss do-not-resuscitate (DNR) decisions and end-of-life (EOL) care with patients and family members. The aim of this study was to explore the DNR and EOL care discussion experience among physicians in Taiwan. A qualitative study was conducted with 16 physicians recruited from the departments of hospice care, surgery, internal medicine, emergency, and the intensive care unit. The interview guidelines included their DNR experience and process and EOL care discussions, as well as their concerns, difficulties, or worries in discussions. Thematic analysis was used to analyze data. Four themes were identified. First, family members had multiple roles in the decision process. Second, the characteristics of the units, including time urgency and relationships with patients and family members, influenced physicians' work. Third, the process included preparation, exploration, information delivery, barrier solution, and execution. Fourth, physicians shared reflections on their ability and the conflicts between law, medical professionals, and the best interests of patients. Physicians must consider not only patients' but also family members' opinions and surmount several barriers in decision-making. They also experienced negative and positive impacts from these discussions.
The coronavirus disease 2019 (COVID-19) pandemic is challenging healthcare systems worldwide, none more so than critical and intensive care settings. Significant attention has been paid to the capacity of Australian intensive care unit (ICUs) to respond to a COVID-19 surge, particularly in relation to beds, ventilators, staffing, personal protective equipment, and unparalleled increase in deaths in ICUs associated with COVID-19 seen internationally. While death is not uncommon in critical care, the international experience demonstrates that restrictions to family presence at the end of life result in significant distress for families and clinicians. As a result, the Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control supported the development of a position statement to provide critical care nurses with specific guidance and recommendations for practice for this emerging priority area. Where possible, position statements are founded on high-quality evidence. However, the short time period since the first recognition of a cluster of pneumonia-like cases in China in January, 2020, meant that an integrative approach was required to expedite timely development of this position statement in preparation for a COVID-19 surge in Australia. This position statement is intended to provide practical guidance to critical care nurses in facilitating next-of-kin presence for patients dying from COVID-19 in the ICU.
In a field that strives to care for patients and families together, what can palliative care clinicians do when patients' families are physically absent? The Covid-19 pandemic has put both literal and figurative walls between health care professionals and families. How health care workers respond to these disconnections might have a lasting impact on patients, on families, and on our practice. Recently, I saw this in the case of a patient our palliative care team was consulted to see. Mr. B was minimally responsive and dying from multisystem organ failure of unclear etiology. As in other cases during this pandemic, our team became a facilitator of interaction between the patient and the physically absent family, seeing an intimacy we normally would not, in this case, by being present while our intern held the phone to Mr. B's ear for an end-of-life call from his wife, son, and daughter. Such moments force us clinicians to be even more present for our families and patients, and they allow us to bear witness to the strength and sadness and love that we might otherwise miss.
Topic: A substantial number of patients die in the intensive care unit, so high-quality end-of-life care is an important part of intensive care unit work. However, end-of-life care varies because of lack of knowledge of best practices.
Clinical Relevance: Research shows that high-quality end-of-life care is possible in an intensive care unit. This article encourages nurses to be imaginative and take an individual approach to provide the best possible end-of-life care for patients and their family members.
Purpose of Paper: To provide recommendations for high-quality end-of-life care for patients and family members.
Content Covered: This article touches on the following domains: end-of-life decision-making, place to die, patient comfort, family presence in the intensive care unit, visiting children, family needs, preparing the family, staff presence, when the patient dies, after-death care of the family, and caring for staff.
Communication between patients and family caregivers plays a key role in successful end-of-life (EOL) care. In the majority of cases, health-care providers (HCP) are responsible for leading this communication in clinical settings. This systematic review aimed to examine the evidence for the efficacy of HCP-led interventions in enhancing communication between patients and family caregivers. The review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and involved a search of MEDLINE via PubMed, CINAHL, Scopus, Embase, and PsycINFO as well as a manual search for additional articles on Google Scholar without date restrictions. Of 2955 articles retrieved, 8 meeting the eligibility criteria were included in the review. A quality appraisal of the selected studies was performed using the van Tulder Scale, with 5 of 8 studies rated as high quality. All 8 studies employed psychoeducational interventions involving both patients and surrogate/family caregivers. Common elements of the interventions reviewed included encouraging participant dyads to share their concerns about the patient’s medical condition, clarify their goals and values for EOL care, and discuss their EOL care preferences. Of 8 interventions reviewed, 6 measured EOL care preference congruence within dyads as a primary outcome, and all 6 interventions were effective in increasing congruence. Secondary outcomes measured included decisional conflict and relationship quality, with mixed outcomes reported. This review suggests that HCP-led EOL communication interventions show promise for improving EOL care preference congruence. However, further studies with improved methodological rigor are needed to establish the optimal timing, intensity, and duration of interventions.
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.
After covid-19 crisis in Italy, serious restrictions have been introduced for relatives, with limitations or prohibitions on hospital visits. To partially overcome these issues "WhatsApp" has been adopted to get family members to participate in clinical rounds. Family members of patients admitted to the acute palliative care unit and hospice were screened for a period of 2 weeks. Four formal questions were posed: 1) Are you happy to virtually attend the clinical round? 2) Are you happy with the information gained in this occasion? 3) Do you think that your loved one was happy to see you during the clinical rounds? 4) This technology may substitute your presence during the clinical rounds? The scores were 0=no, 1=a little bit, 2=much, 3=very much. Relatives were free to comment about these points. Sixteen of 25 screened family members were interviewed. Most family members had a good impression, providing scores of 2 or 3 for the first three items. However, the real presence bedside (forth question) was considered irreplaceable. They perceived that their loved one, when admitted to hospice, had to say good-bye before dying.
The coronavirus disease 2019 (COVID-19) pandemic has spread throughout the world, leading hospitals to expand their critical-care capacity. Logistics in times of surging demand are challenging. Health-care providers are overwhelmed by the relentless workload and tend to focus on the patients, as they have little time for family-centred care.
In many places, a nearly complete lockdown combined with stringent social distancing measures have been put in place in an attempt to curb the spread of the COVID-19 pandemic. Hospital visits are prohibited to ensure that relatives do not contaminate other family members, patients, or health-care professionals. However, the burden on intensive care unit (ICU) relatives of patients with COVID-19 is particularly heavy. The lockdown imposed by many governments can result in confusion, stress, frustration, anger, communication gaps, and post-traumatic stress-related symptoms.
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Behavioural and social interventions adopted to contain the outbreak of coronavirus disease 2019 (COVID-19) are strongly affecting the way that people die in many countries, such as Italy. In health-care facilities, both infected and non-infected patients are isolated. Patients can only communicate with their loved ones via mobile phones or electronic tablets, if these patients are able to use them. For physicians and nurses, who are already overwhelmed by the emergency, providing support to patients helps to maintain humanity at the end of life, but might also be emotionally exhausting.
Objectives: To estimate the probability of a substitute decision maker choosing to withdraw life-sustaining therapy after hearing an affirmative patient response to the phrase "Do you want everything done?"
Design: Discrete choice experiment.
Setting: Single community hospital in Ontario.
Subjects: Nonrandom sampling of healthcare providers and the public.
Intervention: Online survey.
Measurements and Main Results: Of the 1,621 subjects who entered the survey, 692 consented and 432 completed the survey. Females comprised 73% of subjects. Over 95% of subjects were under 65 years old, and 50% had some intensive care-related exposure. Healthcare providers comprised 29% of the subjects. The relative importance of attributes for determining the probability of withdraw life-sustaining therapy by substitute decision makers was as follows: stated patient preferences equals to 23.4%; patient age equals to 20.6%; physical function prognosis equals to 15.2%; length of ICU stay equals to 14.4%; survival prognosis equals to 13.8%; and prognosis for communication equals to 12.6%. Using attribute level utilities, the probability of an substitute decision maker choosing to withdraw life-sustaining therapy after hearing a patient answer in the affirmative "Do you want everything done?" compared with "I would not want to live if I could not take care of myself" was 18.8% (95% CI, 17.2-20.4%) versus 59.8% (95% CI, 57.6-62.0%) after controlling for all the other five attribute levels in the scenario: age greater than 80 years; survival prognosis less than 1%; length of ICU stay greater than 6 months; communication equals to unresponsive; and physical equals to bed bound.
Conclusions: Using a discrete choice experiment survey, we estimated the impact of a commonly employed and poorly understood phrase physicians may use when discussing advance care plans with patients and their substitute decision makers on the subsequent withdraw life-sustaining therapies. This phrase is predicted to dramatically reduce the likelihood of withdraw life-sustaining therapy even in medically nonbeneficial scenarios and potentially contribute to low-value end-of-life care and outcomes. The immediate cessation of this term should be reinforced in medical training for all healthcare providers who participate in advance care planning.
Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family.
Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU.
Design: Prospective case series over a 15-month study period.
Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals.
Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC).
Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%–32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported.
Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.
METHOD: Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher's exact test.
RESULTS: When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use 'recommendations' or 'single-option' choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).
CONCLUSION: Aligning parents to the trajectory of the news about their baby's poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.
PRACTICE IMPLICATIONS: Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.
Cancer impacts spouse caregivers, especially when couples engage in dyadic coping around the cancer. Communication is a key factor in this process. Our goals were to describe cancer-related communication between advanced cancer patients and their spouse caregivers, and to describe how dyadic communication patterns are related to caregivers' reported burden and preparedness for caregiving. Caregivers completed measures of caregiver burden and preparedness for caregiving. Then, the patient and caregiver were asked to interact with each other in two structured discussions: a neutral discussion and a problem discussion focused on cancer. Discussions were coded using the Rapid Marital Interaction Coding System (RMICS2). Caregivers reported moderate levels of preparation and burden. Greater caregiver hostility communication predicted higher levels of caregiver burden, whereas greater caregiver dysphoric affect communication predicted lower levels of caregiver burden. Whereas positivity was more common than hostility in couples' communication, patient hostility was a significant predictor of caregiver preparedness. Patient neutral constructive problem discussion was also associated with increased caregiver preparedness. Caregiver outcomes are an understudied component to dyadic cancer research. Our paper describes observational data on cancer-related communication between caregivers and advanced cancer patients and communication's influence on caregiver outcomes. This work provides the foundation for future evidence-based communication interventions that may influence both patient and caregiver outcomes.
BACKGROUND: Using advance care planning (ACP) to anticipate future decisions can increase compliance with people's end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families.
OBJECTIVE: To explore older people's and their families' experiences with ACP in primary care.
METHODS: We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40-79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach.
RESULTS: We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners' (GPs') time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents' views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP.
CONCLUSIONS: Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs' interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future.
Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.