Preferences For Life-sustaining Treatments Research Articles

Advanced Cancer and End-of-Life Preferences: Curative Intent Surgery Versus Noncurative Intent Treatment.

People with cancer face complex medical decisions, including whether to receive life-sustaining treatments at the end of life. It is not unusual for clinicians to make assumptions about patients' wishes based on whether they had previously chosen to pursue curative treatment. We hypothesized that cancer patients who initially underwent curative intent surgery (CIS) would prefer more aggressive end-of-life treatments compared to patients whose treatment was noncurative intent (non-CIT). This study was a retrospective review of data from a large, randomized controlled trial examining the use of an online decision aid for advance care planning, "Making Your Wishes Known" (MYWK), with patients who had advanced cancer. We reviewed patients' medical records to determine which patients underwent CIS versus non-CIT. In the parent trial, conducted at an academic medical center (2007-2012), 200 patients were enrolled with stage IV malignancy or other poor prognosis cancer. Patients' preferences for aggressive treatment were measured in two ways: using patient-selected General Wishes statements generated by the decision aid and patient-selected wishes for specific treatments under various hypothetical clinical scenarios (Specific Wishes). We evaluated 79 patients. Of these, 48 had undergone initial CIS and 31 had non-CIT. Cancer patients who initially underwent CIS did not prefer more aggressive end-of-life treatments compared to patients whose treatment was non-CIT. Clinicians should avoid assumptions about patients' preferences for life-sustaining treatment based on their prior choices for aggressive treatment.

End-of-life preferences of the general public: Results from a Japanese national survey

PurposeTo determine under different End-of-Life (EoL) scenarios the preferences of the general public for EoL care setting and Life-sustaining-Treatments (LST), and to develop a new framework to assess these preferences. MethodUsing a 2-stage, geographical cluster sampling method, we conducted a postal survey across Japan of 2000 adults, aged 20+. Four EoL scenarios were used: cancer, cardiac failure, dementia and persistent vegetative state (PVS). ResultsWe received 969 valid responses (response rate 48.5%). Preference for EoL care setting varied by illness with those wishing to spend EoL at home only 39% for cancer, 22% for cardiac failure, and 10–11% for dementia and PVS. Preference for LST differed by scenario and treatment type. In cancer, cardiac failure and dementia, about half to two thirds expressed a preference for antibiotics and fluid drip infusion but few for nasogastric (NG) tube feeding, percutaneous endoscopic gastrostomy (PEG), ventilation or cardiopulmonary resuscitation (CPR). Although our models accounted for only 3–9% of the variance, preferences to receive LST were associated with preference to spend EoL in hospital for cancer and cardiac failure but not dementia. ConclusionsFew people preferred to die at home, while a preference for hospital was largely determined by factors other than preference for LST.

Comparison of Consensus on Life-sustaining Treatment of the Elderly in Care Facilities and Family Member Dyad

ObjectivesThe purpose of this study is to compare the agreement in opinion between the elderly in care facilities and their family members regarding the life-sustaining treatment at the deathbed and to find out if the intentions of the elderly are being properly reflected in their deathbed treatment. MethodsData were collected from 85 elderly individuals at five care facilities in Chunkcheongnam-do and 85 family members. The data were collected with a self-administered questionnaire from July 22, 2013 to August 15, 2014. A total of 170 cases were analyzed using SPSS version 21. ResultsFirst, the family members' preference for life-sustaining treatment was higher than the patients' preference. The preference between the elderly and their family members regarding life-sustaining treatment was statistically significant with regards to oral nutrition, pain control through oral and anal administration, pain control through intravenous administration, transfusion, and admission to an intensive care unit. Second, looking at the agreement between elderly and guardians regarding life-sustaining treatment, there was significant concordance about general testing, oral nutrition, intravenous hydration, intravenous nutrition, antibiotic treatment for severe infection with low resiliency, admission to an intensive care unit, blood pressure increase medication use, cardiopulmonary resuscitation, and tracheotomy. ConclusionIt is essential for the medical staff to confirm agreement between the elderly and their family members regarding life-sustaining treatment, and if such a prior agreement is not feasible, the patient's intention should be considered more actionable than their family members.

How do general end-of-life treatment goals and values relate to specific treatment preferences? A population-based study

Background: There is a lack of research on the relationship between general end-of-life goals and values and preferences for specific life-sustaining treatments. Aim: To examine agreement between Dutch older people’s general end-of-life goals and specific life-sustaining treatment preferences. Design: Participants identified general end-of-life goals in an interview and preferences for four life-sustaining treatments in hypothetical cancer and dementia scenarios in a separate questionnaire. Agreement between general goals and specific treatment preferences was calculated. Setting/participants: In total, 1818 older people from 11 representative Dutch municipalities participated in the study. Results: In total, 1168 (response rate 73%) answered questions on general end-of-life and specific treatment preferences. Agreement between a desire to live as long as possible, irrespective of health problems, and a preference for life-sustaining treatments ranged from 51% to 76% in cancer and 41% to 60% in dementia scenarios, depending on the treatment. Agreement between a desire for a shorter life, if without major health problems, and a preference to forgo treatments ranged from 61% to 79% in cancer and 75% to 88% in dementia scenarios. Conclusion: For a sizable minority of participants, specific treatment preferences did not agree with their general end-of-life goals. The more frequent desire to forgo treatments in case of dementia than cancer suggests that physical deterioration is more acceptable than cognitive decline. The findings underline the importance of discussing general care goals, different end-of-life scenarios and the risks and burdens of treatments to frame discussions of more specific treatment preferences.

Predicting End-of-Life Treatment Preferences: Perils and Practicalities

Rid and Wendler propose the development of a Patient Preference Predictor (PPP), an actuarial model for predicting incapacitated patient's life-sustaining treatment preferences across a wide range of end-of-life scenarios. An actuarial approach to end-of-life decision making has enormous potential, but transferring the logic of actuarial prediction to end-of-life decision making raises several conceptual complexities and logistical problems that need further consideration. Actuarial models have proven effective in targeted prediction tasks, but no evidence supports their effectiveness in the kind of broad spectrum prediction task that is the proposed goal of the PPP. We argue that a more focused approach, targeting specific medical conditions and generating treatment predictions based on the preferences of individuals with actual disease experience, is both more firmly grounded in past research and is a more prudent initial strategy for exploring the efficacy of actuarial prediction in end-of-life decision making.

Associations between accurate prognostic understanding and end‐of‐life care preferences and its correlates among Taiwanese terminally ill cancer patients surveyed in 2011–2012

Adequate knowledge of prognosis is a prerequisite for planning appropriate end-of-life (EOL) care. However, questions remain about whether the association between prognostic understanding and EOL-care intensity reflects terminally ill cancer patients' preferences for EOL care. This study investigated the associations between accurate prognostic understanding and EOL-care preferences, and identified correlates of accurate prognostic understanding. A cross-sectional survey of 2452 terminally ill cancer patients from 23 hospitals throughout Taiwan. Nearly half the participants (49.80%) accurately understood their prognosis. These patients were significantly more likely to prefer comfort-oriented care as their goal for EOL care, but less likely to prefer life-prolonging treatments. Accurately understanding prognosis decreased the likelihood of preferring intensive care unit care, cardiac pulmonary resuscitation, cardiac massage, intubation, and mechanical ventilation support, but increased preference for hospice care. Participants were significantly more likely to accurately understand their prognosis if they were male, younger, better educated, with a stronger preference for physicians to disclose their prognosis to them, and receiving care at a hospital accredited as a medical center and in northwest Taiwan. The likelihood of accurate prognostic understanding was lower for patients recently (≤ 12 months) diagnosed with cancers with better prognosis and hematologic malignancies than for lung cancer patients. Accurately understanding prognosis is associated with fewer preferences for life-sustaining treatments and is correlated with both patient and institutional characteristics. Interventions should be developed to improve accurate prognostic understanding, thus facilitating informed EOL-care decisions that may limit the use of aggressive interventions.

Life-Sustaining Treatment

Written advance directives are not common practice in Taiwan; thus, when older adults are critically ill, family members are usually the ones to make decisions regarding life-sustaining treatment. This study determined how well the preferences of the family members for the older adults match the preferences of the older adults themselves with regard to life-sustaining treatment. A cross-sectional comparative descriptive research design was used in this study. Ninety-five pairs of older adults and their families were included in the final analysis. The Life Support Preferences Questionnaire was used to measure life-sustaining preferences. Paired- sample t tests were performed to compare the mean differences between the older adults' preferences and the family members' preferences for these older adults. Family members scored higher on life-sustaining treatment preferences than the older adults for all 32 examined items, with 23 (72%) of these items showing statistical significance. Communication between older adults and their family members regarding life-sustaining treatment may help prevent older adults from receiving unwanted treatments.

The Influence of Race on End-of-Life Choices Following a Counselor-Based Palliative Consultation

Black Americans are more likely than whites to choose aggressive medical care at the end of life. We present a retrospective cohort study of 2843 patients who received a counselor-based palliative care consultation at a large US southeastern hospital. Before the palliative consultation, 72.8% of the patients had no restrictions in care, and only 4.6% had chosen care and comfort only (CCO). After the consult, these choices dramatically changed, with only 17.5% remaining full code and 43.3% choosing CCO. Both before and after palliative consultation, blacks chose more aggressive medical care than whites, but racial differences diminished after the counselor-based consultation. Both African American and white patients and families receiving a counselor-based palliative consultation in the hospital make profound changes in their preferences for life-sustaining treatments.

Does End-of-Life Decision Making Matter?:

This qualitative pilot study explored perspectives, needs, and concerns relating to advance care planning among older homeless adults. Twenty-one older adults residing at a transitional housing facility in an urban area of the West coast were interviewed in person. Key emergent themes included discomfort with the topic, trust in God's decisions, physicians preferred as decision makers, and planning is important but not an immediate concern. Further, people who are homeless want to be approached with sensitivity. Instead of simply eliciting life-sustaining treatment preferences of homeless people, health care professionals should assess their unique concerns and needs regarding death and dying, prepare them to consider their possible end-of-life situation, and assist them to plan in accordance with their needs.

Advances in critical care for the older patient

SummaryAs the proportion of elderly people in the general population increases, so does the number admitted to critical care. In caring for an older patient, the intensivist has to balance the complexities of an acute illness, pre-existing co-morbidities and patient preference for life-sustaining treatment with the chances of survival, quality of life after critical illness and rationing of expensive, limited resources. This remains one of the most challenging areas of critical care practice.

Stability Over Time in the Preferences of Older Persons for Life-Sustaining Treatment

To measure the stability of life-sustaining treatment preferences amongst older people and analyse the factors that influence stability. Longitudinal cohort study. Primary care centres, Granada (Spain). Eighty-five persons age 65 years or older. Participants filled out a questionnaire with six contexts of illness (LSPQ-e). They had to decide whether or not to receive treatment. Participants completed the questionnaire at baseline and 18 months later. 86 percent of the patients did not change preferences. Sex, age, marital status, hospitalisation, and self-perception of health and pain did not affect preferences. Morbidity and the death of a relative did. Stability of preferences of older persons in relation to end-of-life decisions seems to be more probable than instability. Some factors, such as the death of a relative or the increase in morbidity, can change preferences. These findings have implications for advance directives (ADs) and advance care planning.

Advance Care Planning Beyond Advance Directives: Perspectives From Patients and Surrogates

ContextAdvance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). The ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions. ObjectivesTo understand what steps best prepare patients and surrogates for decision making. MethodsWe conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38), aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semistructured focus groups asked what activities best prepared the participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus. ResultsThe mean±SD patient age was 78±8 years, and 61% were nonwhite. The mean±SD surrogate age was 57±10 years, and 91% were nonwhite. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify that they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict. ConclusionBeyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying that the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.

Life-Sustaining Treatment Preferences: Matches and Mismatches Between Patients' Preferences and Clinicians' Perceptions

ContextBetter clinician understanding of patients' end-of-life treatment preferences has the potential for reducing unwanted treatment, decreasing health care costs, and improving end-of-life care. ObjectivesTo investigate patient preferences for life-sustaining therapies, clinicians' accuracy in understanding those preferences, and predictors of patient preference and clinician error. MethodsThis was an observational study of 196 male veterans with chronic obstructive pulmonary disease who participated in a randomized trial. Measures included patients' preferences for mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) if needed in their current state of health, and outpatient clinicians' beliefs about those preferences. ResultsAnalyses were based on 54% of participants in the trial who had complete patient/clinician data on treatment preferences. Patients were more receptive to CPR than MV (76% vs. 61%; P<0.001). Preferences for both treatments were significantly associated with the importance patients assigned to avoiding life-sustaining therapies during the final week of life (MV: b=−0.11, P<0.001; CPR: b=−0.09, P=0.001). When responses were dichotomized (would/would not want treatment), clinicians' perceptions matched patient preferences in 75% of CPR cases and 61% of MV cases. Clinician errors increased as patients preferred less aggressive treatment (MV: b=−0.28, P<0.001; CPR: b=−0.32, P<0.001). ConclusionClinicians erred more often about patients' wishes when patients did not want treatment than when they wanted it. Treatment decisions based on clinicians' perceptions could result in costly and unwanted treatments. End-of-life care could benefit from increased clinician-patient discussion about end-of-life care, particularly if discussions included patient education about risks of treatment and allowed clinicians to form and maintain accurate impressions of patients' preferences.

Implementation of Physician Orders for Life Sustaining Treatment in Nursing Homes in California: Evaluation of a Novel Statewide Dissemination Mechanism

BACKGROUNDImplementing Physician Orders for Life Sustaining Treatment (POLST) forms aims to improve communication of life-sustaining treatment preferences across care venues. California enabled this clinical tool in 2009, and a novel intervention of community coalitions was undertaken to advance POLST in localities around the state. Coalitions engaged facilities, including nursing homes (NHs), to foster POLST adoption. Eighteen months after introduction of POLST, we studied POLST implementation in California NHs.METHODSNHs randomly selected in coalition and non-coalition areas were mailed surveys about POLST preparation and use in 2010. Coalitions identified which NHs they worked with.RESULTSOf 546 NHs surveyed, 143 (52 %) in coalition areas and 141 (52 %) in non-coalition areas responded. In 82 % of responding NHs, staff received POLST education and 59 % of NHs reported having a formal policy on handling POLST. Two-thirds of NHs had admitted a resident with a POLST, and 15 % of newly admitted residents over the past month had a POLST (range 0–100 %). Eighty-one percent of NHs had completed a POLST with a resident. Fifty-four percent of residents were estimated to have a POLST (range 0–100 %) (coalition area NHs 60 % vs. non- coalition area NHs 48 %, p = 0.02). Within coalition areas, NHs that had worked with coalitions were more likely to have completed a POLST with a resident after admission than NHs that had not worked with coalitions. Few NHs (7 %) reported difficulty following POLST orders, but 38 % noted difficulty involving physicians in POLST completion.CONCLUSIONLess than 2 years after introduction, many California nursing homes report using POLST, although some NHs reported no experience. A novel community coalition intervention facilitated POLST implementation.Electronic supplementary materialThe online version of this article (doi:10.1007/s11606-012-2178-2) contains supplementary material, which is available to authorized users.

Influence of personal preferences for life-sustaining treatment on medical decision making among pediatric intensivists*

Withholding and withdrawal of life-sustaining treatment by physicians is influenced by a variety of factors; the role of physicians' personal preferences for life-sustaining treatments has not previously been explored. We sought to examine the relationship between personal preferences for life-sustaining treatment and medical decision making among pediatric intensivists. Cross-sectional national anonymous mail survey. All board-certified/eligible pediatric intensivists identified by the American Medical Association Masterfile. None. A total of 471 (30%) surveys were returned. A Personal Preference Score was calculated from responses to personal-preference questions for life-sustaining treatments adapted from "Your Life, Your Choices," by Pearlman et al. Physicians were asked to consider the "acceptability" of offering and recommending treatment options involving life-sustaining treatments in a hypothetical scenario of a 2-yr old with a high cervical spinal-cord transection. Logistic regression controlling for sociodemographic characteristics found significant relationships (p<.01) between physicians' own preferences modeled as a one standard deviation change in their own Personal Preference Score (preference for life-sustaining treatment) and whether they offered more or less aggressive care (OR [95%CI]). Physicians who had a higher Personal Preference Score (higher preference for their own life-sustaining treatment) were more likely to recommend a tracheostomy (1.38 [1.35-1.41]) and reintubation if the patient failed extubation (1.87 [1.81-1.94]). Pediatric intensivists who had a lower Personal Preference Score (lower preference for life-sustaining treatment) were more likely to recommend that the patient not be reintubated if extubation failed (1.42 [1.39-1.46]) and to recommend Do Not Resuscitate status (1.34 [1.31-1.37]). Among pediatric intensivists, personal preferences for life-sustaining treatment were significantly associated with scenario-based responses to acceptability of withholding and withdrawal of life-sustaining treatment. Physicians should be aware of the potential for personal preferences to influence practice recommendations, and endeavor to elicit and respect family preferences in collaborative decision making.

Attitudes of Elderly Egyptian Nursing Homes Residents Towards Advance Directives. Lack of Knowledge but Positive Attitudes

This study aimed to examine the attitude of elderly Egyptians living in nursing homes in Cairo to advance directives (ADs). A cross-sectional study was conducted and included a sample of 137 participants (60 years and above) from four nursing homes. The majority of them had never heard about ADs before. One hundred and twelve (81.8 %) showed an interest in ADs. The positive attitude toward ADs was associated with higher level of education, advancing age, sensory impairment, polypharmacy, those with functional dependency, and a greater number of existing co-morbidities. Nineteen participants (13.9 %) wanted a proxy for medical decisions, 18 (13.1 %) for financial matters and 75 (54.7 %) for both medical and financial issues. Regarding preferences for life-sustaining treatments; 63 (56.3 %) stated that they would refuse cardiopulmonary resuscitation, and 57 (50.9 %) would refuse mechanical ventilation if they were in an irreversible or incurable persistent vegetative state. Only 32 (28.6 %) participants accepted the idea of organ donation after death. This positive attitude for ADs among this sector of population may encourage the introduction of appropriate policies to facilitate the implementation of ADs among the elderly in Egypt.

Insight Into Advance Care Planning for Patients on Dialysis

ContextAdvance care planning is not included in regular clinical care for patients on dialysis. Insight into life-sustaining treatment preferences and communication about end-of-life care is necessary to develop interventions to improve advance care planning for patients on dialysis. ObjectivesThis cross-sectional observational study aimed to understand the preferences for life-sustaining treatments of outpatients on dialysis and to study the quality of patient-physician communication about end-of-life care and barriers and facilitators to this communication. MethodsThe following outcomes were assessed in 80 clinically stable dialysis patients: demographics, clinical characteristics, life-sustaining treatment preferences (cardiopulmonary resuscitation and mechanical ventilation, and Willingness to Accept Life-Sustaining Treatment instrument), preference for site of death, quality of communication (Quality of Communication Questionnaire), and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire). ResultsPatients were able to indicate their preferences for life-sustaining treatments and site of death. Preferences for life-sustaining treatments depend on the specific treatment, the expected outcome of treatment, and likelihood of an adverse outcome. Life-sustaining preferences were discussed with the nephrologist by 30.3% of the patients. Quality of the patient-physician communication about end-of-life care was rated poor. This study identified several barriers and facilitators to end-of-life care communication. ConclusionPatients should receive information about treatment burden, expected outcome, and the likelihood of an adverse outcome when discussing life-sustaining treatments. Quality of patient-physician communication about end-of-life care needs to improve. Barriers and facilitators to communication about end-of-life care provide direction for future interventions to facilitate advance care planning for patients on dialysis.

Measuring Palliative Care Quality for Seriously Ill Hospitalized Patients

Hospice and palliative care providers need ways to measure and improve care processes. We tested feasibility, usability, reliability, and validity of Prepare, Embrace, Attend, Communicate, Empower (PEACE) quality measures for palliative care. Trained research nurses abstracted data from medical records to generate quality measures for a random sample of 460 seriously ill patients without, and 102 patients with, specialty palliative care (SPC) services. Patient age ranged from 16 to 99 years, 50% were women, and 24% were African American. Of 34 PEACE quality measures, 17 were feasible for hospital palliative care. Inter-rater reliability was high (κ>0.80) for all but two quality measures. Face validity was endorsed by clinical service leaders, and construct validity was established by higher scores for patients receiving SPC. Comprehensive palliative care assessment was completed for only 10% of seriously ill hospitalized patients, compared with 56% of patients with SPC (p<0.001). Patients with moderate or severe pain were more likely to have a clinical assessment with SPC (67% versus 42%, p=0.002). Patients with SPC more often received attention for their emotional and spiritual needs (64% versus 40%, p<0.001) and documentation of preferences for life-sustaining treatments (91% versus 59%, p>0.001). Usability was endorsed by service leaders, who initiated two practice improvement projects. PEACE quality measures are feasible and reliable, and may be useful to examine and improve the quality of palliative care for seriously ill hospitalized patients as well as for patients in hospice. Research is needed to test measures for actionability and responsiveness to intervention.

Predicting Changes in Preferences for Life-Sustaining Treatment Among Patients With Advanced Chronic Organ Failure

For physicians discussing advance care planning with patients with life-limiting illness, it is important to understand the stability of the patients' preferences for life-sustaining treatments and the factors that predict a change in preferences. Our objectives were to investigate 1-year stability of preferences regarding CPR and mechanical ventilation (MV) for outpatients with advanced COPD, chronic heart failure (CHF), or chronic renal failure (CRF) and to identify predictors of changes in preferences. In this study, 265 clinically stable outpatients with advanced COPD, CHF, or CRF were visited at baseline and every 4 months for 1 year to assess preferences regarding CPR and MV in their current health status. Generalized estimating equations were used to examine the association between change in life-sustaining treatment preferences and several potential predictors, including changes in comorbidities, hospital admissions, generic health status, care dependency, mobility, and symptoms of anxiety or depression. The 1-year follow-up period was completed by 77.7% of the patients. Preferences regarding CPR or MV changed in 38.3% of the patients during the follow-up period. Changes over time in generic health status, mobility, symptoms of anxiety and depression, and marital status were associated with changes in life-sustaining treatment preferences. More than one-third of outpatients with advanced COPD, CHF, or CRF change their preferences regarding CPR and/or MV at least once during 1 year. Regular reevaluation of advance care planning is necessary, in particular when patients experience a change in health status, mobility, symptoms of anxiety or depression, or marital status. Netherlands National Trial Register; No.: NTR 1552; URL: http://www.trialregister.nl.

Attitudes Toward Life-Sustaining Treatment: The Role of Race/Ethnicity

This study explores attitudes regarding life-sustaining treatments between Korean American and Mexican American older adults. A cross sectional design was employed to survey 122 older adults residing in an urban area on the West Coast (64 Korean Americans and 58 Mexican Americans). Face to face interviews were conducted using a structured questionnaire. Results show that Mexican Americans as compared to Korean American older adults hold more favorable attitudes toward life-sustaining treatments. Participants who were male were more likely to have positive attitudes toward life-sustaining treatments than female. Findings emphasize the importance of culturally sensitive end-of-life care practices which consider cultural variations in life-sustaining treatment preferences.