End-of-life Care Preferences Research Articles

Opiniones: End‐of‐Life Care Preferences and Planning of Older Latinos

To measure end-of-life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture-based attitudes and extent of ACP. Cross-sectional interview. Twenty-two senior centers in greater Los Angeles. One hundred forty-seven Latinos aged 60 and older. EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family-centered decision-making, trust in healthcare providers, and health and sociodemographic characteristics. If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family-centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P-values <.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1-2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1-2.3) were independently associated with having an advance directive. The majority of older Latinos studied preferred less-aggressive, comfort-focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high-intensity care inconsistent with their preferences.

The role of acculturation in end-of-life outcomes for Latino advanced cancer patients.

6117 Background: The role of acculturation (AC) in the end-of-life (EOL) outcomes of Latino cancer patients is unknown. Methods: Fifty-eight self-reported Latino, Stage IV cancer patients and their caregivers participated in a U.S. multisite, prospective cohort study from September 2002-August 2008. Adapted from Cuellar's work, AC score (ACS) was measured using Brief AC Scale (5, 5-point items) for patients and United States Acculturation Scale (19, 5-point items, USAS) for caregivers. All participants were interviewed at baseline; caregiver post-mortem interviews provided location and quality of death. Results: Sixty-nine percent of patients were born outside the U.S. (predominantly Mexico), with the majority (89.7%) recruited from Texas. Mean ACS score was 10.2 (SD 6.7, range 5-25); mean USAS score was 44.0 (SD 20.4, range 21-80). The insured (ACS mean [SD]: 9.4 [6.3] vs. 14.2 [7.3], p = 0.04), those with no religious affiliation (F = 5.1, p = 0.01), and patients and caregivers with higher educational attainment (ACS r = 0.40, p = 0.002; USAS r = 0.44, p = 0.001) were more highly acculturated. ACS did not vary by baseline patient health/demographics, therapeutic alliance, EOL care preferences or discussions. More acculturated patients were more likely to die at home or in a hospice facility after controlling for confounders (OR 1.3, p = 0.005). Less acculturated caregivers were more likely to rate the quality of death positively (0.04, p = 0.05), however this was attenuated after controlling for location of death (0.02, p = 0.35). Conclusions: This study suggests level of acculturation may influence the location of death of Latino advanced cancer patients, but not EOL preferences or caregiver perception of death quality. No significant financial relationships to disclose.

Racial Differences in Predictors of Intensive End-of-Life Care in Patients With Advanced Cancer

Black patients are more likely than white patients to receive life-prolonging care near death. This study examined predictors of intensive end-of-life (EOL) care for black and white advanced cancer patients. Three hundred two self-reported black (n = 68) and white (n = 234) patients with stage IV cancer and caregivers participated in a US multisite, prospective, interview-based cohort study from September 2002 to August 2008. Participants were observed until death, a median of 116 days from baseline. Patient-reported baseline predictors included EOL care preference, physician trust, EOL discussion, completion of a Do Not Resuscitate (DNR) order, and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit. Although black patients were three times more likely than white patients to receive intensive EOL care (adjusted odds ratio [aOR] = 3.04, P = .037), white patients with a preference for this care were approximately three times more likely to receive it (aOR = 13.20, P = .008) than black patients with the same preference (aOR = 4.46, P = .058). White patients who reported an EOL discussion or DNR order did not receive intensive EOL care; similar reports were not protective for black patients (aOR = 0.53, P = .460; and aOR = 0.65, P = .618, respectively). White patients with advanced cancer are more likely than black patients with advanced cancer to receive the EOL care they initially prefer. EOL discussions and DNR orders are not associated with care for black patients, highlighting a need to improve communication between black patients and their clinicians.

Baseline Characteristics and Outcomes of Patients Who Do Not Desire Resuscitation: An Analysis of the ESCAPE Trial

Background: Hospitalization represents a sentinel event in the life of a heart failure (HF) patient and often prompts discussion regarding end of life care preferences. The characteristics of patients hospitalized with HF who elect not to be resuscitated (DNR) and their outcomes have not been well described. Methods: The ESCAPE study (n=457) was a randomized trial comparing outcomes of patients randomized to PAC-guided therapy compared to clinical assessment alone. Baseline characteristics of patients who declined (DNR) and desired (CPR) resuscitation at randomization were evaluated as well as outcomes of morbidity, mortality, and quality of life. Results: 388 patients (85%) indicated a resuscitation preference, and 5% established DNR status (DNR=24, CPR=364). DNR patients were older (66 yrs vs. 56 yrs, p=0.001), and of white race (79% vs. 60%, p=0.057). DNR patients more frequently had ischemic cardiomyopathy (70.8% vs. 47.8%, p=0.03) and hypertension (73.9% vs. 45.7%, p=0.009) but there were no differences in frequency of diabetes, presence of an ICD or baseline HF medications. LVEF (20%) and sodium (137) were similar in both groups, but SCr was higher in the DNR group (1.7 mg/dl vs. 1.3 mg/dl, p=0.018). DNR patients performed worse on the 6-minute walk test (43 ft. vs. 361 ft., P=0.003). Quality of life (QOL) score at 3 months (Minnesota Living with Heart Failure) was similar in both groups, but deteriorated in the DNR group at 6 months (73.5 vs. 55.0, p=0.037). There was a similar rate of re-hospitalization (DNR=58.3% vs. CPR=60.2%) but a higher proportion of DNR patients died (37.5% vs. 15.7%, P=0.011). No DNR patients received an LVAD or heart transplant versus 8.5% in the CPR group. Conclusions: HF patients desiring DNR status were more likely to be older and of white race. These patients tended to have more adverse prognostic factors (i.e., ischemic etiology, renal insufficiency) and worse baseline functional status than those desiring CPR. Following HF hospitalization, DNR status patients had greater decrements in HF-related QOL and experienced a 2-fold increase in 6-month mortality compared to individuals desiring CPR. Given the association of DNR status with worsening QOL as well as death, DNR status may be an important identifier of patients who may benefit from palliative care and hospice. Further validation is needed to determine if DNR status is a predictor of HF patient-reported and disease-related outcomes beyond traditional prognostic factors.

Spiritual support of patients with advanced illness and associations with end-of-life care and quality of death

9514 Background: Little is known about whether spiritual support is associated with advanced cancer patients' medical care and quality of death (QoD) at the end of life (EoL). Methods: Coping with Cancer is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of advanced, incurable cancer patients conducted from September 2002-August 2008. Analyses were based on 343 deceased patients who were interviewed at baseline and then followed until death a median of 117 days later. At baseline, spiritual support was assessed by (1) patient-rated support of spiritual needs by the medical system (eg, physicians, nurses, chaplains) scored from 0 (not at all) to 5 (completely supported) and (2) patient-reported receipt of hospital/clinic pastoral care services. Outcomes measured included medical care received in the last week of life (hospice; receipt of aggressive EoL care defined as ICU admission, resuscitation, ventilation or chemotherapy in the last week of life; and death in an acute care facility) and QoD. QoD assessments (possible 0–30, with increasing scores reflecting better QoD) were obtained by post-mortem interviews of a caregiver present in the patient's last week of life. Multivariable analyses examined (1) associations between spiritual support variables and EoL care outcomes, controlling for baseline confounds (eg, race, religiousness, patient EoL care preferences) and (2) associations between spiritual support variables and QoD with adjustment for confounds (eg, baseline quality of life, aggressive EoL care). Results: In adjusted analyses, greater medical system spiritual support was associated with increased receipt of hospice care [OR = 2.97 (1.24–7.11), p = .01], but not with receipt of aggressive EoL care or death in an acute care facility. Receipt of pastoral care services was not associated with any EoL care outcome. In adjusted analyses, spiritual support from the medical system and receipt of pastoral care services were significantly associated with better patient QoD (standardized β = 0.16, p = .009 and β = 0.20, p = .0005, respectively). Conclusions: Support of advanced cancer patients' spiritual needs by the medical care team is associated with increased receipt of hospice care and improved patient QoD. No significant financial relationships to disclose.

Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes. Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed. Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures." Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.

Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center.

End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.

End of life care preferences

This review considers how end of life care preferences have been dealt with recently in the scientific literature. The ability to make decisions about one's own dying and death is commonly considered a necessary component of a 'good death'. It is important to allow people to express, if they wish, their end of life preferences. Most of the studies were conducted in patients at advanced stages of terminal illness and involved asking them about what their wishes would be in certain scenarios. Half of the papers specifically addressed the issues of life-shortening medical decisions. On considering the findings of the various studies reported in detail here, it becomes clear that end of life preferences would best be studied using a longitudinal design, because of the fluctuation of these preferences over time and their association with dynamic components of quality of life, such as functional status, and psychosocial and spiritual dimensions. Both patients and health care workers can be assisted in addressing the issue of what is the right time for a patient to record their preferences, in recognizing psychological defences and their evolution during the end of life process, and in managing conflicts and suffering in the patient-family unit. Guidelines and practical tools have begun to be designed and tested.

Advance directives are more likely among seniors asked about end-of-life care preferences.

To estimate the proportion of seniors in a large health maintenance organization (HMO) who had been asked about their end-of-life care preferences (EOLCPs) by a clinician and who had completed an advance directive (AD). To examine the association of having had an EOLCP discussion and AD completion. A random sample of HMO members aged 65 years or older were asked to complete a mailed survey about health and health-related issues in 1996. Data provided by 5117 seniors (80% response rate) were used to estimate the prevalence of EOLCP and AD among seniors overall and in specific risk groups. Bivariate and multiple logistic regression models were used to identify predictors of AD completion, especially having been asked about EOLCP. One third of seniors reported having an AD on file with the HMO, but only 15% had talked with a clinician about EOLCP. Both having been asked about EOLCP and having an AD were positively associated with age, but not significantly associated with sex, race/ethnicity, marital status, or self-rated health status. Having been asked by a clinician about EOLCP was significantly associated with completion of an AD. Clinicians can play an important role in increasing AD completion rates among seniors by bringing up the subject of EOLCPs.