Advance care directives (ACDs) are instructions regarding what types of medical treatments a patient desires and/or who they would like to designate as a healthcare surrogate to make important healthcare decisions when the patient is mentally incapacitated. At end-of-life, when faced with poor prognosis for a meaningful health-related quality of life, most patients indicate their preference to abstain from aggressive, life-sustaining treatments. Patients whose wishes are left unsaid often receive burdensome life sustain therapy by default, prolonging patient suffering. The CoVID pandemic has strained our healthcare resources and raised the need for prioritization of life-sustaining therapy. This highlights the urgency of ACDs more than ever. Despite ACDs' potential to provide patients with care that aligns with their values and preferences and reduce resource competition, there has been relatively little conversation regarding the overlap of ACDs and CoVID-19. There is low uptake among patients, lack of training for healthcare professionals, and inequitable adoption in vulnerable populations. However, solutions are forthcoming and may include electronic medical record completion, patient outreach efforts, healthcare worker programs to increase awareness of at-risk minority patients, and restructuring of incentives and reimbursement policies. This review carefully describes the above challenges and unique opportunities to address them in the CoVID-19 era. If solutions are leveraged appropriately, ACDs have the potential to address the described challenges and ethically resolve resource conflicts during the current crisis and beyond.
BACKGROUND: Structured advance care planning (ACP) program is an important service in the end-of-life care for patients with advanced medical illness. We pioneered a structured and coordinated ACP program for patients with advanced malignancies and end-stage organ failure in Hong Kong. This study investigated the impact of a structured ACP program on the concordance rate for patients' final wishes, patient/family satisfaction, and the number of acute admissions (AA) and length of stay (LOS) in hospital.
METHODS: Patients with advanced malignancy or end-stage organ failure who were able to complete ACP forms during the current admission to medical units were recruited. Patients who could not complete ACP forms or <18 years of age were excluded. The ACP program comprised the following components: (I) baseline education (workshop/role play) in ACP sessions for linked nurses of different medical units; (II) structured ACP discussions with recruited patients and their proxies during admission, after any change in clinical status, and also at monthly intervals; (III) formal structured review of patients' goals at regular team meetings; (IV) "flagging" of advance directive (AD) in hospital computer system and (V) feedback to linked nurse on the congruence of care. Mentally competent patients who did not receive ACP and matched for disease and demographics were selected as controls in a 1:2.5 ratio.
RESULTS: Two hundred forty-three patients were included for analysis between August 2016 and July 2017, of which 69 patients joined the ACP program and 174 of them did not. Two hundred and one patients (83%) had advanced cancer. All had done do-not-attempt-cardiopulmonary-resuscitation (DNACPR) order in the ACP group. The concordance rates for patients' wishes on quality of life, end-of-life and funeral arrangements were 95%, 100% and 100% respectively. Over 70% of patients and their families (N=10) showed satisfaction with the program. The ACP group also had lower mean AA and shorter LOS (0.78±0.23 vs. 1.2±0.8 episode/patient, 4.6±1.7 vs. 7.5±2.5 days, P=0.037 and P=0.023 respectively) in the last 3 months of life compared with the non-ACP group.
CONCLUSIONS: This ACP program achieved high concordance rate for patients' wish items and reduced healthcare utilization.
PURPOSE: Patients' readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals' uncertainty about patients' readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients' readiness is expressed and develops throughout an ACP conversation.
METHODS: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted.
RESULTS: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one's disease. Signs of not being ready included limiting one's perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced.
CONCLUSION: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.
Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. We sought to: 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training.
Methods: This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Semi-structured interviews with advanced cancer out-patients and their family members (n = 4 patients, 4 family members) and oncologists (n = 10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets.
Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP.
Conclusions: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.
Judaism, one of the world's oldest religions, claims an estimated 14.3 million members worldwide. There is great diversity in terms of identity, practice, and belief among people who identify as Jewish. As of 2017, 40% of the global Jewish community resided in the United States, making it essential for palliative care clinicians to understand religious and cultural issues related to their serious illness care. In this article, we will discuss 10 important concepts relevant to the inpatient care, advance care planning, and bereavement needs of Jewish patients and families.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
BACKGROUND: Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making.
AIMS: To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it.
METHODS: Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations.
RESULTS: Of the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place.
CONCLUSION: Although mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.
Advance care planning (ACP) is a cornerstone of self-determination for the type of care provided at the end of life. Despite many national efforts to improve American adults' engagement in ACP, statistics indicate low engagement. Low engagement, especially among racial and ethnic minority populations, immigrants, people with lower socioeconomic status, young adults, rural residents, or non-English speakers, is common. Advance care planning engagement among Muslims living in the United States has been minimally studied. The purpose of this study was to explore Muslims' engagement in ACP. A cross-sectional descriptive design was used. Participants were recruited from Islamic organizations through convenience and snowball sampling. Engagement in ACP was measured by the Advance Care Planning Engagement Survey. A sample of 148 Muslims (18-79 years of age) participated in the study. The average engagement scores ranged from 1.97 to 2.09, with about two-thirds in the precontemplation stage. Significant differences in engagement scores were found according to health condition and end of life experiences. Results suggest a need for further collaborative efforts by health care providers, policymakers, and researchers to mitigate the disparities in ACP engagement in the American Muslim community.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.
Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: ; Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: ; Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. ; Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
PURPOSE: Despite tremendous advances in medical and surgical care, some adults with congenital heart disease (ACHD) develop terminal conditions where therapy is limited. This paper reviews the important role of palliative care, advance care planning (ACP), and end-of-life (EOL) care in ACHD.
RECENT FINDINGS: Recent studies suggest that ACP is infrequently utilized in ACHD. Patients generally express interest in learning more about EOL care, though few ACHD providers have received adequate training to confidently conduct these discussions. Most barriers to communication are largely addressable, and an organized approach to ACP that encourages active patient participation followed by clear documentation is more likely to be successful. Palliative care appears complementary to standard medical care and can be introduced at any stage of illness, with proven benefit in similar patient populations. ACP is an important part of the routine care for all ACHD. Patient preferences should be identified early and palliative methods incorporated whenever necessary.
As life expectancy increases, long periods of comorbidity and low quality of life commonly precede death. Advance care planning within primary care settings is necessary to increase patient agency and prioritize personal wishes. This article disseminates a quality improvement initiative within a federally qualified health center. New procedures were developed to systematically track advance directive conversations using current procedural terminology codes. The systems change resulted in a substantial and sustained increase in advance directive conversation documentation. The increase was presumably due to the implementation of small-scale changes, providers' commitment to geriatric primary care, increases in appointment times, allocation of tasks across disciplines, availability of Spanish speaking staff and translated forms, and the change to record keeping that enabled codes to be easily captured and tracked in the electronic medical record. This work may inform future quality improvement efforts to boost advance care planning among underserved populations in diverse settings.
Background: Many patients with heart failure (HF) have not addressed end-of-life planning.
Objective: Evaluate the impact of an advance care planning (ACP) intervention on patients hospitalized with acute decompensated HF.
Methods: A convenience sample of patients hospitalized with HF completed the Advance Directive Attitude Survey (ADAS) before The Conversation Project intervention. Post-intervention scores were collected after 30 days.
Results: All participants (n = 30) had positive pre-intervention ADAS scores. Post-intervention scores revealed no significant change (p = 0.53). Twenty eight percent completed an advance directive (AD), 64% discussed the AD with a significant other, 40% established a surrogate decision maker, and 12% discussed the AD with a provider.
Conclusions: Advance directive completion rates were low despite participants having positive attitudes regarding their value. Discussion of goals between the patient and significant other is an important factor in end-of-life planning. Further studies are needed on strategies to improve provider discussions and AD completion.
Advance care planning (ACP) for medical decision-making at the end of life has developed around the expectation of death from long-term, progressive chronic illnesses. We reexamine advance care planning in light of the increased probability of death from COVID-19, an exemplar of death that occurs relatively quickly after disease onset. We draw several conclusions about ACP in the context of infectious diseases: interpersonal and sociostructural barriers to ACP are high; ACP is not well-oriented toward decision-making for treatment of an acute illness; and the U.S. health care system is not well positioned to fulfill patients' end of life preferences in a pandemic. Passing the peak of the crisis will reduce, but not eliminate, these problems.
There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends that may lead to greater hospice inclusion beyond this public health emergency.
The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists' perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession's recommendations. Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning.
BACKGROUND: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices.
OBJECTIVE: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms.
DESIGN: Chart review and interviews.
SETTING: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use).
PARTICIPANTS: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms.
MAIN MEASUREMENTS: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83).
KEY RESULTS: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance.
CONCLUSIONS: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.
BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.
OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).
DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.
SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.
RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill."
CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
Objective: Antibiotic use at the end of life (EoL) may introduce physiological as well as psychological stress and be incongruent with patients’ goals of care. Advance care planning (ACP) related to antibiotic use at the EoL helps improve goal-concordant care. Many nursing home (NH) residents are seriously ill. Therefore, we aimed to examine whether state and regional ACP initiatives play a role in the presence of “do not administer antibiotics” orders for NH residents at the EoL.
Methods: We surveyed a random, representative national sample of 810 U.S. NHs (weighted n = 13,983). The NH survey included items on “do not administer antibiotics” orders in place and participation in infection prevention collaboratives. The survey was linked to state Physician Orders for Life-Sustaining Treatment (POLST) adoption status and resident, facility, and county characteristics data. We conducted multivariable regression models with state fixed effects, stratified by state POLST designation.
Results: NHs in mature POLST states reported higher rates of “do not administer antibiotics” orders compared to developing POLST states (10.1% vs. 4.6%, respectively, p = 0.004). In mature POLST states, participation in regional collaboratives and smaller NH facilities (<100 beds) were associated with having “do not administer antibiotics” orders for seriously ill residents (ß = 0.11, p = 0.006 and ß = 0.12, p = 0.003, respectively).
Discussion: NHs in states with mature POLST adoption that participated in infection control collaboratives were more likely to have “do not administer antibiotics” orders. State ACP initiatives combined with regional antibiotic stewardship initiatives may improve inappropriate antibiotic use at the EoL for NH residents.
PURPOSE: Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.
METHODS: We identified adults cared for in a multihospital healthcare system who died between 2010-2017. We categorized patients by 4 primary chronic conditions: heart failure, pulmonary disease, renal disease, or dementia. Within each condition, we examined the effect of multimorbidity (presence of 4 or more chronic conditions) on hospital and ICU admission in the last 30 days of life, in-hospital death, and advance care planning (ACP) documentation >30 days before death. We performed logistic regression to estimate associations between multimorbidity and end-of-life care utilization, stratified by the presence or absence of ACP documentation.
RESULTS: ACP documentation >30 days before death was associated with lower odds of in-hospital death for all 4 conditions both in patients with and without multimorbidity. With the exception of patients with renal disease without multimorbidity, we observed lower odds of hospitalization and ICU admission for all patients with ACP >30 days before death.
CONCLUSIONS: Patients with dementia and multimorbidity had the highest odds of high-intensity end-of-life care. For patients with dementia, heart failure, or pulmonary disease, ACP documentation >30 days before death was associated with lower likelihood of in-hospital death, hospitalization, and ICU use at end-of-life, regardless of multimorbidity.