Advance Care Directives Research Articles

Necesidad de atención paliativa a residentes institucionalizados con enfermedades crónicas evolutivas con pronóstico de vida limitado

ObjectivesTo identify and describe the palliative care needs of patients with advanced chronic diseases by all causes and who are institutionalized in a nursing home using NECPAL CCOMS-ICO® tool and other variables. Material and methodsCross-sectional descriptive study of institutionalized patients diagnosed with advanced progressive chronic diseases in the nursing home «Paseo de la Cuba» in Albacete, from May 1, 2013 to November 1, 2013. The variables were: sex, age, advanced chronic disease, time in the nursing home, existence of advance care directives, incapacity of the patient, do-not-resuscitate order, concomitant diseases, treatment, Charlson and Karnofsky indexes, and all variables contained in the NECPAL CCOMS-ICO®. ResultsThe sample size included 130 residents (65% of the total population) that met criteria of multiple morbidity or chronic diseases and to whom the «surprise question» of the NECPAL CCOMS-ICO® instrument was applied. The mean age of the patients was 84.43 years, with 72.3% women, who had a higher mean age than the men. The most prevalent chronic disease was advanced dementia with 86.9%. Advanced directives had been made by 3.8%, and 17.7% were legally incapacitated. There was 70.8% comorbidity according to the Charlson index. The entire sample had a score below 50 on the Karnofsky Index. Comorbidity and multiple medications were characteristic of the sample. The criterion of a negative answer to the surprise question was fulfilled by 64.5%, and all of them obtained a positive NECPAL rating. ConclusionsImplementing the NECPAL CCOMS-ICO® tool in those health services that attend to high proportions of chronically ill, such as nursing homes, accompanied by training and adaptation of resources measures can lead to a very significant qualitative and quantitative change in our system.

Palliative Care Intervention in the Intensive Care Unit: Comparing Outcomes among Seriously Ill Asian Patients and those of Other Ethnicities

The literature describing the attitude of Asians toward palliative care in the intensive care unit (ICU) is scarce. The purpose of this study was to compare outcomes of Asians and people of other ethnicities after palliative care intervention in the ICU. A retrospective chart review was conducted of all ICU patients evaluated by palliative care; the outcomes measured were incidence of life-sustaining treatments, institution of advance care directives, and preferences for end-of-life care. The palliative care team evaluated 119 patients (46.2 percent Caucasian, 27.2 percent Asian, and 26.1 percent other ethnicities). There were no differences in demographics or clinical variables. Thirty-six percent of the Asians, 49 percent of the Caucasians, and 28.6 percent of the patients of other ethnicities (p = 0.19) had healthcare proxies. The palliative care team increased advance care directives by more than 40 percent in all groups (p < 0.001). There were no differences in the use of life-sustaining treatments or preferences for comfort measures among ethnic groups. Asians are as likely as people of other ethnicities to decide on advance care directives, life-sustaining treatments, and comfort measures after palliative care evaluation in the ICU.

'Planning ahead' among community-dwelling older people from culturally and linguistically diverse background: a cross-sectional survey.

To explore preparedness of end-of-life care planning among community-dwelling older persons of culturally and linguistically diverse background. To improve end-of-life care through advance care planning, the key concept 'Planning ahead' has been promoted in Australia. However, since the introduction of the model in 2008, it is not known whether 'Planning Ahead' practice by older people from culturally and linguistically diverse backgrounds has improved. A cross-sectional survey. A total of 453 community older adults (65+) who attended 17 day care centres in a region were invited to participate in the study. A total of 229 people completed the survey with a response rate of 50·5%. The questions relevant to this study include: (1) awareness of enduring guardian, advance care directive and advance care planning, (2) the preference for substitute decision-makers and (3) the challenges experienced with advance care planning. Awareness of advance care planning was low, and completion of advance care directive was very low. 37·5% of Anglo Celtic group had an enduring guardian, compared with 15·5, 24·1 and 13·3% from Mediterranean, Eastern European and Asia/Pacific group, respectively. Children were the most preferred substitute decision-makers more for Asia/Pacific group than Anglo Celtic, Mediterranean and Eastern Europeans. The various difficulties experienced included being time-consuming, difficult to understand terms and forms, and do not know how to do it. Regardless of cultural and ethnic backgrounds, a low level of 'Planning ahead' practices was apparent because of a lack of understanding of the concept, the forms and the processes involved. The gap identified between the existing legal/ethical frameworks and the preferences of older people as substitute decision-makers adds new knowledge for further discussion. Nursing professionals are provided with an opportunity to improve their practice to meet the needs of older persons and their families in planning ahead for future treatment options.

Predictors of emergency room visits or acute hospital admissions prior to death among hospice palliative care clients in Ontario: a retrospective cohort study.

BackgroundHospice palliative care (HPC) is a philosophy of care that aims to relieve suffering and improve the quality of life for clients with life-threatening illnesses or end of life issues. The goals of HPC are not only to ameliorate clients’ symptoms but also to reduce unneeded or unwanted medical interventions such as emergency room visits or hospitalizations (ERVH). Hospitals are considered a setting ill-prepared for end of life issues; therefore, use of such acute care services has to be considered an indicator of poor quality end of life care. This study examines predictors of ERVH prior to death among HPC home care clients.MethodsA retrospective cohort study of a sample of 764 HPC home care clients who received services from a community care access centre (CCAC) in southern Ontario, Canada. All clients were assessed using the Resident Assessment Instrument for Palliative Care (interRAI PC) as part of normal clinical practice between April 2008 and July 2010. The Andersen-Newman framework for health service utilization was used as a conceptual model for the basis of this study. Logistic regression and Cox regression analyses were carried out to identify predictors of ERVH.ResultsHalf of the HPC clients had at least one or more ERVH (n = 399, 52.2%). Wish to die at home (OR = 0.54) and advanced care directives (OR = 0.39) were protective against ERVH. Unstable health (OR = 0.70) was also associated with reduced probability, while infections such as prior urinary tract infections (OR = 2.54) increased the likelihood of ERVH. Clients with increased use of formal services had reduced probability of ERVH (OR = 0.55).ConclusionsFindings of this study suggest that predisposing characteristics are nearly as important as need variables in determining ERVH among HPC clients, which challenges the assumption that need variables are the most important determinants of ERVH. Ongoing assessment of HPC clients is essential in reducing ERVH, as reassessments at specified intervals will allow care and service plans to be adjusted with clients’ changing health needs and end of life preferences.

PI CME driven interventions in an outpatient oncology practice to improve awareness and utilization of advanced care directives.

e20508 Background: The completion of advance directives (AD) and the discussion of a patient’s end of life goals result in a more patient-centered approach to care. The Adena Cancer Center develope...

Advance care directives are not always helpful

Advance care directives are not always helpful

Reasons and Outcomes for Long‐Term Care Transfers to the Hospital: A Retrospective Review

Reasons and Outcomes for Long‐Term Care Transfers to the Hospital: A Retrospective Review

"My Preference would be to be at Home": Patients' Experiences of their Hospice at Home Care

A specialist 'Hospice at Home' (HaH) service commenced in 2006 in Mid West Ireland whereby participants received palliative care from a specialist team in their own home. An independent team was commissioned to evaluate the key stakeholders' perspectives of this service including patients, carers and staff. This original paper presents the findings from the patients receiving the HaH service. Objective: The investigation aimed to examine the experiences of patients receiving Hospice at Home care from a new multidisciplinary palliative care team. Method: Possible participants were drawn from the clinical register and screened for suitability. Fifteen participants were selected and interviewed using a semi-structure interview schedule; interviews were transcribed and subjected to thematic analysis. Results: Overall, participants' experiences of the service were positive with quality of care being highly rated. Participants regarded the service as supportive and responsive, particularly in relation to pain management and symptoms. Excellent communication and interpersonal skills from Hospice at Home staff members were highlighted. Overall, participants rated their own quality of life as high; although this cannot be attributed to the HaH service alone. Although not explicitly asked about the possibility of being a burden to family remains an issue for those being cared for at home. The majority of participants were very satisfied with the service enabling them to be cared for at home. Areas for future improvements to the HaH service emerged, including discussions about advanced care directives, access and method of referral to the Hospice at Home service and patients' understanding of the service being delivered. Conclusion: The Hospice at Home Service supported participants in facilitating their choice to be care for and to die at home. However, discussion with patients, family and HaH staff is recommended concerning place of death and the range of services provided by the HaH.

Medical emergency response in a sub-acute hospital: improving the model of care for deteriorating patients.

To assess the frequency, characteristics and outcomes of medical emergency response (MER) calls in a sub-acute hospital setting. The present study was a retrospective observational study in a sub-acute hospital providing aged care, palliative care, rehabilitation, veteran's mental health and elective surgical services. We assessed annual MER call numbers between 2005 and 2011 in the context of contemporaneous changes to hospital services. We also assessed MER calls over a 12-month period in detail using standardised case report forms and the scanned medical record. There were 2285 multiday admissions in the study period where 141 MER calls were triggered in 132 patients (61.7 calls per 1000 admissions). The median patient age was 83.0 years, and 55.3% of patients were men. Most calls occurred on weekdays and during the daytime, and were triggered by altered conscious state, low oxygen saturations and hypotension. Documentation of escalation of care before the MER call was not present in 99 of 141 (70.2%) calls. Following the call, in 70 of 141 (49.6%) cases, the patient was transferred to the acute campus, where 52 (74.2%) and 14 (20%) patients required ward and intensive care level treatment, respectively. Thirty-seven of 132 (28%) patients died. A palliative care physician adjudicated that most of these patients who died (24/37; 64.9%) were appropriate for a call, but that 19 (51.4%) should have received palliation at the time of the call. Compared with survivors, patients who died after the MER call were more likely originally admitted from supported accommodation. MER calls in our sub-acute hospital occurred in elderly patients and are associated with an in-hospital mortality of 28%. A small proportion of patients required intensive care level treatment. There is a need to improve processes involving escalation of care before MER call activation and to revise advance care directives. What is known about this topic? Rapid response team (RRT) activation has been well described in the acute hospital setting. Although the impact on survival benefit to patients remains controversial, it has been widely adopted as a model of care to respond to deteriorating ward patients. This is particularly relevant in Australia at present with the implementation of the new National Safety and Quality Health Service Standards. What does this paper add? There have not been any previous papers published on rapid response systems in a sub-acute hospital. This paper describes some of the changes and challenges associated with increasing RRT activations in a sub-acute health care facility. What are the implications for practitioners? For clinicians in a sub-acute setting, the study reinforces the importance of pre-emptively documenting and communicating advance care directives. In addition, it is important to identify patients with reversible pathology likely to benefit from transfer and acute care, and to avoid the transfer of those who will not and, instead, provide appropriate palliation. For practitioners involved in models of care for deteriorating patients, the study provides information on where problems occurred in our system and the strategies used to address these issues.

Doctors, patients urged to discuss advanced care plans

When Dr. Christopher (Chip) Doig’s mother-in-law was hospitalized recently with a life-threatening condition, he experienced first hand the stress many patients and family members undergo with medical professionals who are reluctant to initiate conversations about advanced care directives. “

Assessment of Damages for Wrongful Birth and Consolidation in Advance Care Directives

Assessment of Damages for Wrongful Birth and Consolidation in Advance Care Directives

Revisión sobre bioética en la Unidad de Cuidados Intensivos: sobre la autonomía y el papel de los familiares y los representantes legales

In recent decades we have witnessed a change in mentality in which patient autonomy has reached significant preponderance, with informed consent as the prime example. The approach in situations where the patient cannot make decisions varies from one country to another, affording greater or lesser importance to the wishes of the family when a surrogate has not been designated. Several studies show discrepancies between the decisions of patients and that the decisions which their surrogates have taken for them. We review concepts such as greatest benefit, evaluate the potential limitations of advance care directives, and consider different options when the action or treatment proposed by professionals comes into conflict with the ideas expressed by the patient's family or surrogates, and which has led to different legally sanctioned solutions in some regions.

“He Got His Last Wishes”: Ways of Knowing a Loved One’s End-of-Life Preferences and Whether those Preferences Were Honored

As a patient approaches death, family members often are asked about their loved one's preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one's preferences. While many surrogates indicate that they have some knowledge of their loved one's preferences, how surrogates obtain such knowledge is not well understood. Additionally, although research indicates that the emotional burden of end-of-life decision making is diminished when surrogates have knowledge that a loved one's preferences are honored, it remains unclear how surrogates come to know these preferences were carried out. The current study examined the ways that next of kin knew veterans' end-of-life preferences, and their ways of knowing whether those preferences were honored in Veteran Affairs Medical Center (VAMC) inpatient settings.

NORMALISING ACP IN THE HOSPITAL- THE ROLE OF STANDARDS

Programmes such as Respecting Choices in the USA and Respecting Patient Choices in Australia have been developed to address the need for improved advance care planning. Numerous guidelines, policies and...

DOCUMENTATION OF ADVANCE END OF LIFE CARE WISHES IN TWO AUSTRALIAN RESIDENTIAL AGED CARE FACILITIES

BackgroundHealthcare professionals often lack awareness of patients' wishes regarding end-of-life care (EOLC). Existing data suggest low utilisation and poor application rates of advance care directives in Australian residential aged care...

COMMUNICATING MY VALUES, MY WISHES: ADVANCE CARE PLANNING IN COMMUNITY PALLIATIVE CARE

Background and AimAll people have the right to receive high-quality care; to be offered Advance Care Planning (ACP) opportunities and to have a dignified death in line with their spiritual...

Failing the Failing Heart: A Review of Palliative Care in Heart Failure

Heart failure (HF) is the most common reason for hospital admission for patients older than 65 years. With an aging population and improving survival in heart failure patients, the number of people living with HF continues to grow. As this population increases, the importance of treating symptoms of fatigue, dyspnea, pain, and depression that diminish the quality of life in HF patients becomes increasingly important. Palliative care has been shown to help alleviate these symptoms and improve patients' satisfaction with the care they receive. Despite this growing body of evidence, palliative care consultation remains underutilized and is not standard practice in the management of HF. With an emphasis on communication, symptom management, and coordinated care, palliative care provides an integrated approach to support patients and families with chronic illnesses. Early communication with patients and families regarding the unpredictable nature of HF and the increased risk of sudden cardiac death enables discussions around advanced care directives, health care proxies, and deactivation of permanent pacemakers or implantable cardioverter defibrillators. Cardiologists and primary care physicians who are comfortable initiating these discussions are encouraged to do so; however, many fear destroying hope and are uncertain how to discuss end-of-life issues. Thus, in order to facilitate these discussions and establish an appropriate relationship, we recommend that patients and families be introduced to a palliative care team at the earliest appropriate time after diagnosis.

Advance Care Planning Intervention

Kirchoff and colleagues1 understate the value and important implications of their exceptional study. It is one of only two randomized controlled studies now available on the effect of a model advance care planning intervention for ambulatory individuals at high risk of facing end-of-life decisions. It demonstrates excellent design, the feasibility of such a study, and the use of a patient-centered advance care planning module. Following patients over 3 years, the authors show that approximately one-third of high-risk patients die and that one-quarter of these become decisionally incapacitated at the time of death. Thus, advance care planning has the potential to influence the care of approximately one-twelfth of high-risk individuals (as defined by them) within a reasonable period of time in which to consider an advance care plan as valid.2 Moreover, given the data on the number of incapacitated individuals who did not receive the intervention and whose wishes were not met (13%), as few as approximately 1% of high-risk individuals could directly benefit from an advance care directive. If, as the study suggests, preparing an advance care directive will have little overall influence on choices about life-sustaining treatment, the question arises as to the need for allocating resources to this procedure, especially in individuals at low risk of having to make end-of-life decisions. Although clinicians may readily recall troubling situations in which advance care directives were sorely needed, such as the Terri Schiavo case, few similar events may actually occur. Nevertheless, an earlier randomized controlled trial showed beneficial outcomes of advance care planning in multiple aspects of family well-being.3 Previous researchers have suggested that the original goal of advance care planning—assuring end-of-life care congruent with the incapacitated individuals wishes—should be of secondary importance.4, 5 Instead, they advise focusing on the value of early communication about end-of-life care in preparing anyone for future end-of-life decisions and in assisting all families and healthcare proxies when faced with difficult choices about life-sustaining care. Conflict of Interest: None. Author Contributions: Interpretation of data and preparation of manuscript. Sponsor's Role: None.

Barriers to Completion of Advance Care Directives among African Americans Ages 25–84: A Cross-Generational Study

Prior studies conducted in the area of Advance Care Directive document completion in African Americans have primarily targeted the elderly who are either institutionalized in skilled nursing facilities or are members of faith communities. Few studies have been done concerning barriers to Advance Care Directive document completion that include non-elderly African Americans. The purpose of this study was to identify the common barriers to advance care directive document completion across generations of African Americans ages 25-84. Using convenience sampling among various Baptist denominations of the African-American faith community of Buncombe County, North Carolina, 40 individuals ranging in age from 25-84 participated in multiple focus group sessions. Findings revealed participants shared three common barriers: 1) surrogate decision-making, 2) lack of education concerning advance care directive discussions and completion, and 3) fear and denial. Also revealed were barriers that varied across generations: 1) fatalism, 2) mistrust of the health care system, 3) spirituality, and 4) economics.

CASE STUDIES

With increased numbers of the elderly, including nursing home patients, being accepted for end-stage kidney disease (ESKD) management, there is heightened interest and focus on end of life decisions, advanced care planning and directives, withdrawal from dialysis and palliative care in this setting. Despite this, care at the individual patient level can vary greatly. Here, we present two contrasting cases to highlight the importance of early and ongoing involvement of palliative care in patients with ESKD. In the first case, a high quality of life was preserved before the patient died with dignity, with early interdisciplinary palliative care involvement. In the second case there was a long protracted period of poor quality of life prior to death. This was associated with resistance to the involvement of palliative care, mainly from the family. Addressing end of life care issues early in the chronic kidney disease (CKD) trajectory and ensuring patients, their families and health care providers are well informed, may contribute to a better outcome for the patient and their family.