Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
Background: The medical profession increasingly recognizes the growing need to educate nonpalliative physicians in palliative care.
Objective: This study aims to provide a scoping review of the primary palliative care (PPC) education currently available to graduate medical trainees in primary and specialty tracks.
Design: Studies of PPC interventions in U.S. residency or fellowship programs of all subspecialties published in English and listed on MEDLINE, CINAHL, and EMBASE through January 2020 were included. To meet admission criteria, studies had to describe the content, delivery methods, and evaluation instruments of a PPC educational intervention.
Results: Of 233 eligible full texts, 85 studies were included for assessment, of which 66 were novel PPC educational interventions and 19 were standard education. Total number of publications evaluating PPC education increased from 8 (2000-2004) to 36 (2015-2019), across 11 residency and 10 fellowship specialties. Residency specialties representing the majority of publications were emergency medicine, general surgery, internal medicine, and pediatric/medicine-pediatrics. PPC content domains most taught in residencies were communication and symptom management; the primary delivery method was didactics, and the outcome assessed was attitudes. Fellowship specialties representing the majority of publications were pediatric subspecialties, nephrology, and oncology. The PPC content domain most taught in fellowships was communication; the primary delivery method was didactics and the outcome evaluated was attitudes.
Conclusions: While PPC education has increased, it remains varied in content, delivery method, and intervention evaluations. Future studies should include more widespread evaluation of behavioral outcomes, longitudinal persistence of use, and clinical impact.
OBJECTIVES: The purpose of this study is to map the characteristics of the existing medical literature describing the medications, settings, participants and outcomes of medical assistance in dying (MAID) in order to identify knowledge gaps and areas for future research.
DESIGN: Scoping review.
SEARCH STRATEGY: We searched electronic databases (MEDLINE, EMBASE, PsychINFO, CINAHL and CENTRAL), clinical trial registries, conference abstracts and professional guidelines from jurisdictions where MAID is legal, up to February 2020. Eligible report types included technical summaries, institutional policies, practice surveys, practice guidelines and clinical studies that describe MAID provision in adults who have provided informed consent for MAID.
RESULTS: 163 articles published between 1989 and 2020 met eligibility criteria. 75 studies described details for MAID administered by intravenous medications and 50 studies provided data on oral medications. In intravenous protocols, MAID was most commonly administered using a barbiturate (34/163) or propofol (22/163) followed by a neuromuscular blocker. Oral protocols most often used barbiturates alone (37/163) or in conjunction with an opioid medication (7/163) and often recommended using a prokinetic agent prior to lethal drug ingestion. Complications included prolonged duration of the dying process, difficulty in obtaining intravenous access and difficulty in swallowing oral agents. Most commonly, the role of physicians was prescribing (83/163) and administering medications (75/163). Nurses' roles included administering medications (17/163) and supporting the patient (16/163) or family (13/163). The role of families involved providing support to the patient (17/163) and bringing medications from the pharmacy for self-administration (4/163).
CONCLUSIONS: We identified several trends in MAID provision including common medications and doses for oral and parenteral administration, roles of healthcare professionals and families, and complications that may cause patient, family and provider distress. Future research should aim to identify the medications, dosages, and administration techniques and procedures that produce the most predictable outcomes and mitigate distress for those involved.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
OBJECTIVE: to map the available evidence on the main topics investigated in palliative care in primary health care.
METHOD: scoping review type study carried out in five databases, including original articles, based on the descriptors palliative care, palliative care at the end of life, terminal care, terminal state, primary health care and their respective acronyms and synonyms, totaling 18 publications. The extraction of data from primary studies was performed using an instrument produced by the authors and which allowed the construction of the categories presented.
RESULTS: 18 publications were included in this review. Among the most studied themes are the difficulties of the teams regarding the continuity of care in the health network; the importance of in-service education by the multidisciplinary team; professional unpreparedness; bioethics; the validation and application of scales for prognosis and care for some pathologies such as cancer and diabetes; among others.
CONCLUSION: it became evident that palliative care in primary health care has been gradually developed, but it is necessary to consider the organization of primary health care and the social policies that support or weaken it, being considered a complex challenge.
Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use.
Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging.
Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020.
Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included.
Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions.
Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19.
Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.
Background: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients.
Objective: To gain insight in developments in the use of CSD in various countries and subpopulations.
Design: We performed a search of the literature published between January 2000 and April 2020, in Pubmed, Embase, CINAHL, Psycinfo and the Cochrane Library by using the PRISMA guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death.
Results: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on deceased persons frequencies of CSD varied from 3% in Denmark in 2001 to 18% in the Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years more studies reported on the use of CSD for non-physical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients and their families.
Conclusions: The frequency of CSD seems to increase over time possibly partly due to an extension of indications for sedation, from mainly physical symptoms to also non-physical symptoms.
When someone is terminally ill, it is often a very stressful time for the dying person and their family. It would not be unusual for intra-family conflict, involving one or more family members and even the dying person, to occur. However, this type of conflict has not been identified as an end-of-life issue needing to be noticed and addressed or prevented when possible. This lack of attention could be because it is not known how common or how impactful this type of conflict is. A scoping research literature review was conducted for available 2004–2019 evidence on the incidence or prevalence of intra-family conflict, factors contributing to it or causing it, and the outcomes or impact of it. A search for published peer-review articles identified 18 research reports for a scoping review. The 18 studies, all conducted in developed countries, revealed intra-family conflict is often present; and with a range of harmful effects for the dying person, the family as a whole or individual family members, and other persons and organizations. The identified factors contributing to or predisposing intra-family conflict were grouped into three categories: (a) family disagreements over curative treatment and/or end-of-life care and decisions, (b) previous family conflict and other family dynamic matters, and (c) the dying process itself. The evidence identified through this scoping review, although relatively minimal, should be useful for planning future research and for raising awareness of end-of-life intra-family conflict to improve social services and palliative programs or services.
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. While there is an emerging literature on young-old caregivers, less is known about spouse carers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. The aim of this review, therefore, is to identify and synthesise the literature concerning the experiences of caregiver’s aged 75 and over whose partner is approaching end-of-life. We conducted a mixed-method systematic review and narrative synthesis of the empirical literature published between 1985 and May 2019, identified from six databases: Medline, PsychINFO, Cumulative Index to Nursing and Allied Health Literature, Embase, Sociological Abstracts and Social Service Abstracts. Hand searching and reference checking were also conducted. Gough’s Weight of Evidence and Morgan’s Feminist Quality Appraisal tool used to determine the quality of papers. From the initial 7819 titles, 10 qualitative studies and 9 quantitative studies were included. We identified three themes: 1) “Embodied impact of care” whereby caring was found to negatively impact carers physical and psychological health, with adverse effects continuing into bereavement; 2) “Caregiving spouse’s conceptualisation of their role” in which caregiver’s navigated their self and marriage identities in relation to their partner’s condition and expectations about gender and place; 3) “Learning to care” which involved learning new skills and ways of coping to remain able to provide care. We identified a recent up-surge in published papers about very old spousal caregivers, which now comprise a small, medium-quality evidence base. This review outlines a range of potential lines of inquiry for future research including further clarification of the impact of caregiving on the likelihood of mortality, the incidence of men and women providing end-of-life care amongst this age group, and the role of anticipatory grief in shaping their perceptions of their relationship and their own longevity.
Background: The Asian American (AA) population is rapidly becoming one of the largest racial/ethnic groups in the United States. Despite this growth and advances in palliative care (PC) programs in the United States, the scope and nature of the literature regarding PC for AAs remains unclear. This review provides an overview of existing research on PC for AAs, identifies gaps in the research with recommendations for future research and delineates practice implications.
Methods: A scoping review of studies published in English was conducted. Electronic Databases (PubMed, Embase, CINAHL, and PsycINFO databases) were searched up to December 2019. No starting date limit was set. Arksey and O’Malley’s methodological framework was followed for scoping reviews.
Results: Of 2390 publications initially identified, 42 studies met our inclusion criteria for this review. Southeast AA subgroups remain understudied compared to East and South AAs. Most studies were descriptive; a few (n = 3) evaluated effectiveness of PC interventions for AAs. Research synthesized in this review addresses the following topics and includes considerations in PC related to care recipients and their relatives: treatment choice discussions (73%), coordination of care with health care providers (26%), symptom management (14%), and emotional support (10%). This review identified various factors around PC for AAs, specifically the influence of cultural aspects, including levels of acculturation, traditional norms and values, and religious beliefs.
Conclusion: A culturally inclusive approach is vital to providing appropriate and accessible PC for AAs. Further research is needed concerning core PC components and effective interventions across diverse AA subgroups.
Background: Refractory angina can have a significant effect on quality of life. Non-invasive interventions have been suggested but there are few guidelines on management. Our aim was to systematically review all studies that reported non-invasive interventions for refractory angina and report on their effectiveness and safety.
Methods: We performed a literature search of six databases and a grey literature search. Treatments considered first line or second line according to the European Society of Cardiology were excluded, as were interventions that had undergone review within the last 3 years. Design, setting and outcomes were extracted and quality was assessed. A narrative synthesis was undertaken, including an analysis of adverse effects.
Results: 4476 studies were screened, 14 studies were included in our analysis. Interventions were specialist multidisciplinary programmes, transcutaneous electrical nerve stimulation (TENS), perhexiline, medical optimisation, morphine and intranasal alfentanil. The effects of specialist programmes and perhexiline treatment were mixed. Positive effects were reported with TENS, opioids and medical optimisation, with improvements in symptoms, exercise capacity and quality of life. No major adverse effects were noted in any of the treatments.
Conclusion: There are non-invasive treatments for refractory angina that are overlooked by current guidelines. While the quality of these studies varies, positive changes have been reported in symptoms, exercise tolerance and quality of life with few adverse effects. There is a need for further research into these treatments which could be useful within the contexts of cardiology and palliative care.
In this paper, we strongly advocate for universal palliative care access during the COVID-19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID-19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID-19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi-level practices and policies to foster the delivery of safe, high-quality palliative care for all are urgently needed.
Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences.
Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews.
Setting: Palliative and hospice care.
Population: Full-text abstraction of 84 articles, identifying 16 articles.
Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report).
Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results.
Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood.
Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice.
Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed.
Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples.
Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples.
The use of home parenteral nutrition (HPN) in patients with incurable cancer remains controversial with significant variation worldwide. We aimed to systematically evaluate the literature from 1960 to 2018 examining the use of HPN in advanced cancer patients for all intestinal failure indications and assess the potential benefits/burdens of HPN in this cohort of patients. The primary end point was survival and secondary end points were quality of life and nutritional/performance status. Meta-analysis was performed with a random effects model, where suitable. Of 493 studies retrieved, 22 met the quality inclusion criteria. Studies were mainly conducted in Western countries (Italy, USA, Canada, Germany), including a total of 3564 patients (mean age 57.8 years). Mean duration for HPN was 5.0 mo. Mean overall survival was 7.3 mo. Patients with improved performance status survived for longer on HPN. Quality of life was sparsely reported though there was no observed negative impact of PN. HPN-related complications were reported in eight studies only and were mainly catheter-related blood stream infections. In conclusion, HPN is used for several indications in advanced cancer, though there is significant heterogeneity of results. Disparities in geographical distribution of the studies may reflect variation in accessing HPN.
Globally, 40 million people need palliative care; about 69% are people over 60 years of age. The highest proportion (78%) of adults are from low- and middle-income countries (LMICs), where palliative care still developing and is primarily limited to urban areas. This integrative review describes strategies used by LMICs to establish palliative care in rural areas. A rigorous integrative review methodology was utilized using four electronic databases (Ovid MEDLINE, Ovid Emcare, Embase classic+Embase and CINAHL). The search terms were: ‘palliative care’, ‘hospice care’, ‘end of life care’, ‘home-based care’, ‘volunteer’, ‘rural’, ‘regional’, ‘remote’ and ‘developing countries’ identified by the United Nations (UN) as ‘Africa’, ‘Sub-Saharan Africa’, ‘low-income’ and ‘middle- income countries’. Thirty papers published in English from 1990 to 2019 were included. Papers were appraised for quality and extracted data subjected to analysis using a public health model (policy, drug availability, education and implementation) as a framework to describe strategies for establishing palliative care in rural areas. The methodological quality of the reviewed papers was low, with 7 of the 30 being simple programme descriptions. Despite the inclusion of palliative care in national health policy in some countries, implementation in the community was often reliant on advocacy and financial support from non-government organizations. Networking to coordinate care and medication availability near-patient homes were essential features of implementation. Training, role play, education and mentorship were strategies used to support health providers and volunteers. Home- and community-based palliative care services for rural LMICs communities may best be delivered using a networked service among health professionals, community volunteers, religious leaders and technology.
Introduction: Intensive care units are contexts in which, due to the remarkable existence of particularly technological resources, interventions are promoted to extend the life of people who experience highly complex health situations. This ability can lead to a culture of death denial where the possibility of implementing futile care and treatment cannot be excluded.
Objective: To describe nurses' perceptions of adult intensive care units regarding the therapeutic futility of interventions implemented to persons in critical health conditions.
Method: Review of the literature following the Scoping Review protocol of the Joanna Briggs Institute. The Population, Concept, and Context mnemonic was used to elaborate the research question and the research was performed using the EBSCOHost search engine in the CINAHL Complete databases, MEDLINE Complete, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews to identify studies published between 1990 and 2019. Seven studies were selected.
Results: Nurses consider that therapeutic futility, a current problem in adult intensive care units, may have a negative impact on persons in critical health conditions and that contributes directly to resource expenditure and moral conflicts and consequently leads to emotional exhaustion.
Conclusion: Due to the complexity of this concept, knowing and understanding people's and families' perceptions is crucial to the decision-making process, for which reason nurses can play a key role in managing these situations.
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.