Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most ...consistent with the patient's values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, "What do you think the patient would choose?" is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient's values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient's values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.
BACKGROUND
Although numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision ...making that have received little attention.
OBJECTIVE
To characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies.
DESIGN
Qualitative interview study.
PARTICIPANTS
Thirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one.
APPROACH
We conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods.
KEY RESULTS
Surrogates experience significant emotional conflict between the desire to act in accordance with their loved one’s values and 1) not wanting to feel responsible for a loved one’s death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling.
CONCLUSIONS
Surrogates’ struggle to reconcile personal and family emotional needs with their loved ones’ wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates’ emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.
Treatment decisions commonly have to be made in intensive care units (ICUs). These decisions are difficult for surrogate decision makers and often lead to decisional conflict, psychological distress, ...and treatments misaligned with patient preferences.
To determine whether a decision aid about prolonged mechanical ventilation improved prognostic concordance between surrogate decision makers and clinicians compared with a usual care control.
Multicenter, parallel, randomized, clinical trial. (ClinicalTrials.gov: NCT01751061).
13 medical and surgical ICUs at 5 hospitals.
Adult patients receiving prolonged mechanical ventilation and their surrogates, ICU physicians, and ICU nurses.
A Web-based decision aid provided personalized prognostic estimates, explained treatment options, and interactively clarified patient values to inform a family meeting. The control group received information according to usual care practices followed by a family meeting.
The primary outcome was improved concordance on 1-year survival estimates, measured with the clinician-surrogate concordance scale (range, 0 to 100 percentage points; higher scores indicate more discordance). Secondary and additional outcomes assessed the experiences of surrogates (psychological distress, decisional conflict, and quality of communication) and patients (length of stay and 6-month mortality). Outcomes assessors were blinded to group allocation.
The study enrolled 277 patients, 416 surrogates, and 427 clinicians. Concordance improvement did not differ between intervention and control groups (mean difference in score change from baseline, -1.7 percentage points 95% CI, -8.3 to 4.8 percentage points; P = 0.60). Surrogates' postintervention estimates of patients' 1-year prognoses did not differ between intervention and control groups (median, 86.0% interquartile range {IQR}, 50.0% vs. 92.5% IQR, 47.0%; P = 0.23) and were substantially more optimistic than results of a validated prediction model (median, 56.0% IQR, 43.0%) and physician estimates (median, 50.0% IQR, 55.5%). Eighty-two intervention surrogates (43%) favored a treatment option that was more aggressive than their report of patient preferences. Although intervention surrogates had greater reduction in decisional conflict than control surrogates (mean difference in change from baseline, 0.4 points CI, 0.0 to 0.7 points; P = 0.041), other surrogate and patient outcomes did not differ.
Contamination among clinicians could have biased results toward the null hypothesis.
A decision aid about prolonged mechanical ventilation did not improve prognostic concordance between clinicians and surrogates, reduce psychological distress among surrogates, or alter clinical outcomes. Decision support in acute care settings may require greater individualized attention for both the cognitive and affective challenges of decision making.
National Institutes of Health.
On September 1, 2023, Texas made important revisions to it its decades‐old statute granting legal safe harbor immunity to physicians who withhold or withdraw life‐sustaining treatment over the ...objection of critically ill patients’ surrogate decision‐makers. However, lawmakers left untouched glaring flaws in a key safeguard for patients—the transfer option. The transfer option is ethically important because, when no hospital is willing to accept the patient in transfer, that fact is taken as strong evidence that the surrogates’ treatment requests fall outside accepted medical practice. But there are serious shortcomings in how the transfer option is carried out in Texas and many other states, which undermines the ethical usefulness of the process. We identify these shortcomings and recommend revisions to state statutes and professional guidelines to overcome them.
To describe the symptom experiences of family members of patients at high risk for dying in the intensive care unit and to assess risk factors associated with higher symptom burden.
Prospective, ...cross-sectional study.
Three intensive care units at a large academic medical center.
A sample of 74 family members of 74 intensive care unit patients who had a grave prognosis and were judged to be at high risk for dying. Patients at high risk for dying were identified as having Acute Physiology and Chronic Health Evaluation II scores >20, an intensive care unit length of stay >72 hrs, and being mechanically ventilated.
None.
We assessed the degree of symptom burden approximately 4 days after the patient's admission to the intensive care unit in the following domains: traumatic stress, anxiety, and depression. Overall, the prevalence of symptoms was high, with more than half (57%) of family members having moderate to severe levels of traumatic stress, 80% having borderline symptoms of anxiety, and 70% having borderline symptoms of depression. More than 80% of family members had other physical and emotional symptoms, such as fatigue, sadness, and fear, and these were experienced at the moderate to severe levels of distress. Factors independently associated with greater severity of symptoms included younger age, female gender, and non-white race of the family member. The only patient factor significantly associated with symptom severity was younger age. Despite their symptom experience, the majority of the family members were coping at moderate to high levels and functioning at high levels during the intensive care unit experience.
We document a high prevalence of psychological and physical symptoms among family members during an intensive care unit admission. These data complement existing data on long-term symptom burden and highlight the need to improve family centered care in intensive care units.
Social isolation and loneliness are gaining recognition for their role in health outcomes, yet they have not been defined in people with chronic obstructive pulmonary disease (COPD).
To determine the ...national prevalence of and characteristics associated with social isolation and loneliness in people with COPD.
This is a cross-sectional study of community-dwelling adults aged ⩾50 years in the nationally representative HRS (Health and Retirement Study) (2016-2018). Participants self-reported COPD and supplemental oxygen use and were categorized into three groups:
) no COPD;
) COPD; and
) COPD on oxygen. Social isolation was defined using a nine-item scale indicating minimal household contacts, social network interaction, and community engagement. Loneliness was measured using the 3-Item UCLA Loneliness Scale. Multivariable logistic regression defined prevalence and associated characteristics for both.
Participants (
= 10,384) were on average 68 years old (standard deviation, ±10.5), 54% female, 10% Black, 11% self-reported COPD, and 2% self-reported supplemental oxygen. Overall, 12% were socially isolated, 12% lonely, and 3% both socially isolated and lonely. People with COPD had a higher adjusted prevalence of social isolation (no COPD: 11%; COPD: 16%; COPD on oxygen: 20%;
< 0.05) and loneliness (no COPD: 11%; COPD: 18%; COPD on oxygen: 22%;
< 0.001). In those with COPD, characteristics associated with social isolation (
< 0.05) included sex (men: 22%; women: 13%), non-Hispanic White ethnicity (White: 19%; Black: 7%), low net worth (<$6,000: 32%; $81,001-$239,000: 10%), depression (depression: 24%; no depression: 14%), having difficulty with one or more activities of daily living (one or more difficulty: 22%; no difficulty: 14%), and current cigarette use (current: 24%; never: 13%). Characteristics associated with loneliness (
< 0.05) included younger age (50-64 yr: 22%; 75-84 yr: 12%), being single (single: 32%; married: 12%), depression (depression: 36%; no depression: 13%), having difficulty with one or more activities of daily living (one or more difficulty: 29%; no difficulty: 15%), diabetes (diabetes: 26%; no diabetes: 17%), and heart disease (heart disease 23%; no heart disease: 17%).
Nearly one in six adults with COPD experience social isolation, and one in five experience loneliness, with almost twice the prevalence among those on supplemental oxygen compared with the general population. Demographic and clinical characteristics identify those at highest risk to guide clinical and policy interventions.
Despite ongoing ethical debate concerning who should control decisions to discontinue life support for incapacitated, critically ill patients, the perspectives of surrogate decision makers are poorly ...understood.
To determine (1) what degree of decisional authority surrogates prefer for value-sensitive life support decisions compared with more technical biomedical decisions, and (2) what predicts surrogates' preferences for more control over life support decisions.
This was a prospective study of 230 surrogate decision makers for incapacitated, mechanically ventilated patients at high risk of death. Surrogates reported their preferred degree of decisional authority using the Degner Control Preferences Scale for two types of decisions: a value-sensitive decision about whether to discontinue life support and a decision regarding which antibiotic to prescribe for an infection.
The majority of surrogates (55%, 127/230; 95% confidence interval, 49-62%) preferred to have final control over the value-sensitive life support decision; 40% (91/230) wished to share control equally with the physician; 5% (12/230) of surrogates wanted the physician to make the decision. Surrogates preferred significantly more control over the value-sensitive life support decision compared with the technical decision about choice of antibiotics (P < 0.0001). Factors independently associated with surrogates' preference for more control over the life support decision were: less trust in the intensive care unit physician, male sex, and non-Catholic religious affiliation.
Surrogates vary in their desire for decisional authority for value-sensitive life support decisions, but prefer substantially more authority for this type of decision compared with technical, medical judgments. Low trust in physicians is associated with surrogates preferring more control of life support decisions.
Many survivors of critical illness and their family members experience significant psychological distress after patient discharge.
To compare the effects of a coping skills training (CST) program ...with an education program on patient and family psychological distress.
In this five-center clinical trial, adult patients who received mechanical ventilation for more than 48 hours and one family member of each patient were randomized to six weekly CST telephone sessions plus access to a study website or a critical illness education program.
The primary outcome was the patient Hospital Anxiety and Depression Scale (HADS) score at 3 months. Secondary outcomes included 3- and 6-month HADS subscales and the Impact of Events Scale-Revised. Among the 175 patients randomized to CST (n = 86) or education (n = 89), there was no significant difference between CST and education in either 3-month HADS scores (difference, 1.3; 95% confidence interval CI, -0.9 to 3.4; P = 0.24) or secondary patient and family outcomes. In prespecified analyses, among patients with high baseline distress (n = 60), CST recipients had greater improvement in 6-month HADS score (difference, -4.6; 95% CI, -8.6 to -0.6; P = 0.02) than the education group. Among patients ventilated longer than 7 days (n = 47), education recipients had greater improvement in 3-month HADS score (difference, -4.0; 95% CI, -8.1 to -0.05; P = 0.047) than the CST group.
CST did not improve psychological distress symptoms compared with an education program. However, CST improved symptoms of distress at 6 months among patients with high baseline distress, whereas the education program improved distress at 3 months among those ventilated for more than 7 days. Future efforts to address psychological distress among critical illness survivors should target high-risk populations. Clinical trial registered with www.clinicaltrials.gov (NCT01983254).
Reactive nitrogen oxides (NOy; NOy = NO + NO₂ + HONO) decrease air quality and impact radiative forcing, yet the factors responsible for their emission from nonpoint sources (i.e., soils) remain ...poorly understood. We investigated the factors that control the production of aerobic NOy in forest soils using molecular techniques, processbased assays, and inhibitor experiments. We subsequently used these data to identify hotspots for gas emissions across forests of the eastern United States. Here, we show that nitrogen oxide soil emissions are mediated by microbial community structure (e.g., ammonium oxidizer abundances), soil chemical characteristics (pH and C:N), and nitrogen (N) transformation rates (net nitrification). We find that, while nitrification rates are controlled primarily by chemoautotrophic ammonia-oxidizing archaea (AOA), the production of NOy is mediated in large part by chemoautotrophic ammonia-oxidizing bacteria (AOB). Variation in nitrification rates and nitrogen oxide emissions tracked variation in forest communities, as stands dominated by arbuscular mycorrhizal (AM) trees had greater N transformation rates and NOy fluxes than stands dominated by ectomycorrhizal (ECM) trees. Given mapped distributions of AM and ECM trees from 78,000 forest inventory plots, we estimate that broadleaf forests of the Midwest and the eastern United States as well as the Mississippi River corridor may be considered hotspots of biogenic NOy emissions. Together, our results greatly improve our understanding of NOy fluxes from forests, which should lead to improved predictions about the atmospheric consequences of tree species shifts owing to land management and climate change.
Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services.
To assess the effect of CONNECT (Care Management by ...Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes.
This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle.
The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care.
The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale HADS: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted.
A total of 672 patients were enrolled (mean SD age, 69.3 10.2 years; 360 women 53.6%). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 28.2 vs 134.1 28.1; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 16.6 vs 24.0 16.1; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 3.4 vs 4.8 3.7, adjusted mean difference, -0.08 95% CI, -0.71 to 0.57, P = .82; HADS anxiety subscale score: 5.7 3.9 vs 5.4 4.2, adjusted mean difference, -0.31 95% CI, -0.96 to 0.33, P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention.
This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists.
ClinicalTrials.gov Identifier: NCT02712229.
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