Care For Serious Illness Research Articles

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Time to Develop Guidelines for Spiritual Care in Serious Illness.

In 2022, a JAMA systematic review of 342 high quality studies called for spiritual care to be a routine part of care for patients with serious illness. The review's multidisciplinary panel made several recommendations for addressing patients' and families' spiritual concerns. Despite these evidence-based recommendations, there are no clinical guidelines that inform when and how such spiritual care should be provided. We propose convening a multi-disciplinary workgroup to generate specific and actionable guidelines for incorporating spiritual care in serious illness care. We suggest three workgroup priorities: (1) determining best approaches to identifying patient and family members' spiritual care needs; (2) developing ways to integrate chaplains into routine clinical care; and (3) determining best approaches to communicate availability of spiritual care. Developing these guidelines is an imperative next step to deliver high quality, person and family-centered care.

Deployment of SHARE model in ADLIFE project to boost Shared Decision Making in a patient-centered approach.

Introduction: Serious illness raises the stakes for engaging patients and families in healthcare decisions. They include those with critical life-threatening illnesses, advanced stages of major chronic diseases, or multi-morbidity and frailty. Patients confront debilitating symptoms and impending threats to function, decision-making capacity, and survival. Patients, caregivers, and health care practitioners identify communication and shared decision-making (SDM) as essential components of good care in serious illness. SDM is a process where clinicians and patients work together to clarify treatment, management, or self-management support goals, sharing information about options and preferred outcomes to reach a mutual agreement on the best course of action.
 ADLIFE is an EU-funded project to improve the quality of life of older people with advanced chronic diseases by providing integrated intelligent personalized care via a digitally enabled holistic and integrated supportive care ICT Toolbox. ADLIFE care model aims to respond to the individual patient's situation and improve the relationship between patients, carers, and professionals. This patient-centred approach, in which the patient's values and preferences are incorporated, enables the definition of an individualized and personalized treatment for the patient.
 Methods: The project seeks to promote, encourage, and offer the possibility of promptly integrating SDM through the Personalized Care Plan Management Platform (PCPMP). From more than 22 accepted definitions of shared decision-making, the project has implemented the adapted SHARE approach (https://www.ahrq.gov/) for exploring and comparing care options through meaningful dialogue about what matters most and benefits the patient. The model includes a five-task process:
 (i) Seeking the involvement of the patient (healthcare professional);
 (ii) Helping the patient explore and compare treatment options;
 (iii) Assessing the patient's values and preferences;
 (iv) Making a decision;
 (v)Evaluating the patient's decision after a period of time. 
 The SHARE approach proposes the involvement of patients and professionals in different tasks such as information transfer, risk communication, and preference elicitation, tailoring options, or broader decision-making. The model offered in ADLIFE to healthcare professionals includes information and evidence that supports the approach, establishing the relation and connection between the tasks and actors involved in the process.
 Results: In ADLIFE the SDM process is suggested by the PCPMP. The suggestions appear in specific situations to engage in shared decision-making. Professionals can choose to engage in the process at any other moment. Based on the SHARE approach, professionals will be provided with quick help for each of the five tasks, including the definition of the task, aids for professionals and for patients, and support about how and when to carry out the task (information and materials).
 Discussion and Conclusions: The SDM model implemented boosts in a useful way how professionals and patients can be involved in a clinical decision. ADLIFE focuses on motivating healthcare professionals to engage in SDM routinely and promote patient autonomy, involvement, voice, emotions, and trust. The project can ultimately create an SDM culture and encourage and improve the ability and skills of clinicians to perform SDM activities. 
 Acknowledgements: 
 ADLIFE (GA 875209) received funding from the EU Horizon 2020. The authors thank all partners within ADLIFE.

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

Disrespectful and inadequate palliative care to lesbian, gay, and bisexual patients.

The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity. A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners. There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner. These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

A Pilot Study of a Palliative Care Service Embedded in a Hepatology Clinic at a Large Public Hospital.

Background: End-stage liver disease (ESLD) patients carry heavy symptom burdens and risk receiving aggressive and sometimes unwanted care at end of life. Palliative care (PC), which aims to alleviate symptoms and facilitate goal-concordant care in serious illness, may offer substantial benefits for ESLD patients but is not widely provided. Objectives: To assess the impact of PC integrated within hepatology (PCIH) services on health care utilization, advance care planning (ACP), and hospice enrollment. Design: We compared patients who received PCIH (n = 55) to a retrospective cohort (n = 57) receiving usual care in an outpatient hepatology clinic. Setting/Subjects: From June 2016 to November 2017, we enrolled patients receiving care in a U.S. public hospital clinic who met the following inclusion criteria: (1) ESLD with a Model for End-Stage Liver Disease score ≥20, (2) hepatology approval for PC referral, and (3) at least one advanced complication of ESLD. Measurements: We assessed patient demographics, clinical information, health care insurance status, health care utilization, completion of psychosocial assessments, and ACP using two-sided Fisher's exact test and Mann-Whitney U tests. Results: Patients receiving PCIH more frequently had goals of care discussions (87.3% vs. 21.2% p ≤ 0.01), completed ACP documentation (56.4% vs. 7.0%, p ≤ 0.01), psychosocial assessments (98.2% vs. 35.1%, p ≤ 0.01), and hospice enrollment (25.5% vs. 7.0%, p = 0.01). Patients receiving PCIH who were hospitalized also had fewer mean hospitalization days (13 vs. 19.7 days, p ≤ 0.01). Conclusions: Embedding PC services in a hepatology clinic is a promising strategy to improve care for ESLD patients in public hospitals.

Collaborative Primary Palliative Care in Serious Illness: A Pragmatic Path Forward.

"Collaborative Primary Palliative Care in Serious Illness: A Pragmatic Path Forward." Annals of the American Thoracic Society, 20(3), pp. 358–360

Treatment preferences among adults with normal cognition and cognitive impairment.

Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios. Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status. Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p=0.070) and 8.5 (p=0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p=0.044) and heart attack scenarios (30.0% vs. 20.2%, p=0.033). Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.

Advance Care Planning for Patients with New Serious Illnesses after Medicare’s New Payments

Advance Care Planning (ACP) supports adults to understand and communicate their values and wishes for future medical care in order to ensure goal-concordant care in serious illness when patients are too ill to make their own decisions [1,2]. In recognition of the misalignment between payment for ACP and its value, the Center for Medicare & Medicaid Services (CMS) authorized payment for ACP through new Current Procedural Terminology (CPT) codes (99497 and 99498) in 2016 [1].

Clinician distress in seriously ill patient care: A dimensional analysis.

Caring for patients with serious illness may severely strain clinicians causing distress and probable poor patient outcomes. Unfortunately, clinician distress and its impact historically has received little attention. The purpose of this article was to investigate the nature of clinician distress. Qualitative inductive dimensional analysis. After review of 577 articles from health sciences databases, a total of 33 articles were eligible for analysis. This study did not require ethical review and the authors adhered to appropriate academic standards in their analysis. A narrative of clinician distress in the hospital clinician in the United States emerged from the analysis. This included clinicians' perceptions and sense of should or the feeling that something is awry in the clinical situation. The explanatory matrix consequence of clinician distress occurred under conditions including: the recognition of conflict, the recognition of emotion, or the recognition of a mismatch; followed by a process of an inability to feel and act according to one's values due to a precipitating event. This study adds three unique contributions to the concept of clinician distress by (1) including the emotional aspects of caring for seriously ill patients, (2) providing a new framework for understanding clinician distress within the clinician's own perceptions, and (3) looking at action outside of a purely moral lens by dimensionalizing data, thereby pulling apart what has been socially constructed. For clinicians, learning to recognize one's perceptions and emotional reactions is the first step in mitigating distress. There is a critical need to understand the full scope of clinician distress and its impact on the quality of patient-centered care in serious illness.

Negative media portrayal of palliative care: a content analysis of print media prior to the passage of Voluntary Assisted Dying legislation in Victoria.

Key misunderstandings of palliative care exist in the community, with media being reported as a key source underpinning knowledge. This retrospective media analysis of consecutive articles sought to examine the portrayal of palliative care in the Australian print media, focussing on the 2 years (2016-2018) coverage preceding the Voluntary Assisted Dying legislation in Victoria, Australia. Summative content analyses revealed coverage of palliative care was frequently (74%) in the context of a discussion of euthanasia. Only small numbers of articles described the activities of palliative care, and even fewer its potential beneficial impact, while a quarter (26%) described palliative care was inadequate to relieve suffering. These findings suggest that current coverage of palliative care in the media may contribute to negative public views and misconceptions. An opportunity exists to enhance media coverage, and in turn, improve the public understanding of care in serious illness.

Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review.

Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations. We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers. We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies. Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation. We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing. For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization. This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.

The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review

IntroductionPerson-centred care has become internationally recognised as a critical attribute of high-quality healthcare. However, the concept has been criticised for being poorly theorised and operationalised. Serious illness is especially aligned...

Launching the Next Steps to Improve Hospice and Palliative Medicine Fellow Performance Assessment: A Look Back to the Initial Toolkit of Assessment Methods

Education leaders in hospice and palliative medicine (HPM) have long acknowledged the challenge of fellow performance assessment and the need for HPM-specific fellow assessment tools. In 2010, and in alignment with the Accreditation Council for Graduate Medical Education's (ACGME's) directive toward competency-based medical education, the national HPM Competencies Workgroup curated a set of assessment tools, the HPM Toolkit of Assessment Methods. The Toolkit has been a resource for HPM fellowship directors in evolving practical, multifaceted fellow assessment strategies. Now, as American Academy of Hospice and Palliative Medicine plans for a national workgroup in 2020 to define current HPM fellow assessment methods and to propose strategies to strengthen and standardize future assessment, the Toolkit provides a strong base from which to launch. However, the field learned important lessons from the 2010 Workgroup about the consensus process, gaps in areas of assessment, opportunities to address gaps with new or adapted tools, and limitations in implementing the Toolkit over time in terms of tracking, accessibility, and dissemination. This article describes the development of the Toolkit, including recommended tools and methods for assessment within each ACGME competency domain, and links the lessons learned to recommendations for the 2020 workgroup to consider in creating the next HPM assessment strategy and toolkit. Effective implementation will be crucial in supporting fellows to reach independent practice, which will further strengthen the field and workforce to provide the highest quality patient and family-centered care in serious illness. This will require an inspired, committed effort from the HPM community, which we enthusiastically anticipate.

What Mattered Then, Now, and Always: Illness Narratives From Persons of Color.

Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.

An Adapted Conceptual Model Integrating Palliative Care in Serious Illness and Multiple Chronic Conditions.

Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population. The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients' needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted. Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction). The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.

Patient-Reported Receipt of Goal-Concordant Care Among Seriously Ill Outpatients—Prevalence and Associated Factors

ContextGoal-concordant care is an important indicator of high-quality care in serious illness. ObjectivesTo estimate the prevalence of patient-reported receipt of goal-concordant care among seriously ill outpatients and identify factors associated with the absence of patient-reported goal concordance. MethodsAnalysis of enrollment surveys from a multicenter cluster-randomized trial of outpatients with serious illness. Patients reported their prioritized health care goal and the focus of their current medical care; these items were matched to define receipt of goal-concordant care. ResultsOf 405 patients with a prioritized health care goal, 58% reported receipt of goal-concordant care, 17% goal-discordant care, and 25% were uncertain of the focus of their care. Patient-reported receipt of goal concordance differed by patient goal. For patients who prioritized extending life, 86% reported goal-concordant care, 2% goal-discordant care, and 12% were uncertain of the focus of their care. For patients who prioritized relief of pain and discomfort, 51% reported goal-concordant care, 21% goal-discordant care, and 28% were uncertain of the focus of their care. Patients who prioritized a goal of relief of pain and discomfort were more likely to report goal-discordant care than patients who prioritized a goal of extending life (relative risk ratio 22.20; 95% CI 4.59, 107.38). ConclusionSeriously ill outpatients who prioritize a goal of relief of pain and discomfort are less likely to report receipt of goal-concordant care than patients who prioritize extending life. Future interventions designed to improve receipt of goal-concordant care should focus on identifying patients who prioritize relief of pain and discomfort and promoting care aligned with that goal.

Accountability for the Quality of Care Provided to People with Serious Illness.

Care for patients with serious illness is an emerging practice area that has gained attention as value-based purchasing has increased. While the number of programs is growing, their impact on care quality and outcomes is unknown. With support from the Gordon and Betty Moore Foundation, the National Committee for Quality Assurance (NCQA) is assessing the feasibility of creating an accountability program focused on serious illness care. This article describes the process of developing an accountability program, findings from our initial work, and our plans to develop measures for a serious illness care accountability program. We focused on three questions: 1. What patient populations should be targeted for measurement? 2. What entities have accountability for ensuring high-quality care for serious illness? 3. What structures, processes, and outcomes should be evaluated in an accountability program for serious illness care? Our environmental scan showed that the evidence base for specific patient populations or care models is not sufficiently mature to justify traditional structure and process measures. In visits to serious illness care programs, we observed different staffing models, care models, care settings, and payment structures. We found a gap between recommended inclusion criteria and services when compared to inclusion criteria and services offered by existing programs. To address the challenges, NCQA intends to develop outcome measures driven by patient and family priorities. Structure and process measures will focus on building organizations' capacity to measure outcomes, including patient engagement and outcomes, linked to patient goals.