An empirical analysis of the decision-making of limiting life-sustaining treatment for patients with advanced chronic obstructive pulmonary disease in Hong Kong, China

OBJECTIVES: To understand the prognostic and quality-of-life considerations surrounding life-sustaining treatment decisions for patients with advanced chronic obstructive pulmonary disease (COPD) in Hong Kong China. METHODS: A documentary review of 49 COPD patients and 19 patient case studies from the medical departments of 2 hospitals were undertaken to examine the practices of DNI decision-making (do not perform mechanical ventilation and cardiopulmonary resuscitation). Statistical, event, and thematic analyses were conducted to delineate the prognostic and quality-of-life factors that shaped the not for intubation and mechanical ventilation (DNI) decisions. RESULTS: Three major treatment-limiting decision-making patterns existed in practice: 1) Patient-initiated and shared decision-making with physician (n = 14); 2) Physician-initiated and shared decision-making with the patient/family members (n = 24); and 3) Physician-initiated DNI decision-making with patient family, but without patient participation due to mental incapacity (n = 11). Prognostic considerations include physiological parameters, performance status, concomitant diseases, therapeutic regimens, and the utilization of medical services. Three major themes were delineated regarding the way in which the patients evaluated their life quality in the context of DNI status. They are prognostic awareness, illness burdens, and existential concerns. DISCUSSION: A decision-making framework used by patients/families/physicians to limit life-sustaining treatments in patients with advanced COPD is delineated. Observations regarding how treatment limiting decision-making for patients with advanced chronic illnesses can be improved in Hong Kong are discussed.     

The effect of age on medical decisions made by patients with chronic illness

Patients are currently encouraged to appoint surrogates to make healthcare decisions for them in the event that they are not able to make those decisions for themselves. Many studies have suggested that in hypothetical situations, surrogates often make different decisions than the still-capacitated patients say they would make. Age difference between patient and appointed surrogate is one possible explanation because many surrogates are next-generation relatives. This study evaluated differences in end-of-life decision making between elderly and younger patients with chronic disease. Two age groups were interviewed: (1) geriatric patients aged 70 and older and; (2) acquired immunodeficiency syndrome (AIDS) patients aged 30-50. Subjects who demonstrated an understanding of cardiopulmonary resuscitation (CPR) and artificial nutrition and hydration (ANH) were asked to choose, on a five-point Likert scale, whether they would want these treatments for themselves in four hypothetical scenarios: (1) an older person in a coma after a car accident; (2) a younger person in a coma after a car accident; (3) an older person with Alzheimer's disease; (4) a younger person with AIDS dementia. One hundred seventy-six subjects were included: 84 geriatric patients and 92 AIDS patients. Differences in the two groups were significant only in the scenario of an older person in a coma after a car accident (p = 0.007), with the geriatric patients wanting more treatment. The lack of significant differences between healthcare decisions made by the two groups under the hypothetical scenarios utilized in this study may indicate that age differences will not prevent a next-generation healthcare agent from making substituted judgement that accurately reflects patient wishes.     

Withholding and withdrawing life-sustaining treatment

Withholding or withdrawing life-sustaining therapies is ethical and medically appropriate in some circumstances. This article summarizes the American Medical Association's Education for Physicians on End-of-life Care (EPEC) curriculum module on withholding or withdrawing therapy. Before reviewing specific treatment preferences, it is useful to ask patients about their understanding of the illness and to discuss their values and general goals of care. Family physicians should feel free to provide specific advice to patients and families struggling with these decisions. Patients with decision-making capacity can opt to forego any medical intervention, including artificial nutrition/hydration and cardiopulmonary resuscitation.     

Association of Hospice Care Services With the Utilization of Life-Sustaining Treatments During End-of-Life Care Among Patients With Cancer: A Nationwide 11-Year Cohort Study

ContextThe impact of hospice care services on the utilization of life-sustaining treatments during end-of-life care in terminally ill patients has not been extensively studied.ObjectivesTo determine the impact of hospice care services on the utilization of life-sustaining treatments during the last three months of life among patients with cancer.MethodsThis nationwide population-based cohort study identified adults with cancer diagnosis from the Taiwan Registry for Catastrophic Illness, 2006–2016. Life-sustaining treatments included cardiopulmonary resuscitation, intubation, mechanical ventilation support, nasogastric tube feeding, and total parenteral nutrition. Hospice care services consisted of hospice inpatient care, hospice-shared care, and hospice home care. The association of hospice care services with the utilization of life-sustaining treatments was determined using multiple logistic regression.ResultsOf 516,409 patients with cancer, 310,722 (60.2%) patients used life-sustaining treatments during the last three months of life. After adjusting for covariates, patients with hospice care services were less likely to receive life-sustaining treatments during the last three months of life than those without the services (adjusted odds ratio [AOR]: 0.70; 95% CI: 0.69–0.71). While type of life-sustaining treatments were considered, hospice care services were associated with a lower likelihood of receiving cardiopulmonary resuscitation (AOR: 0.125; 95% CI: 0.118–0.131), endotracheal intubation (AOR: 0.204; 95% CI: 0.199–0.210), mechanical ventilation support (AOR: 0.265; 95% CI: 0.260–0.270), nasogastric tube feeding (AOR: 0.736; 95% CI: 0.727–0.744), and total parenteral nutrition (AOR: 0.86; 95% CI: 0.84–0.88).ConclusionHospice care services were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life in patients with cancer.     

End-of-life decisions: influence of advance directives on patient care

The patient records of 160 older adults who died in a community hospital were reviewed to determine the use of advance directives and evaluate their effect on the care decisions made by health care providers. Findings confirmed that the use of advance directives has not changed during the past 15 years. The documents did not seem to influence health care providers' decisions about the hospital unit in which patients were treated, the use of life-sustaining treatments, or the initiation of comfort care plans. The presence of a living will seemed to influence health care providers' decisions to write do-not-resuscitate orders more often and to use cardiopulmonary resuscitation less often for patients possessing the document. Recommendations for future research include implementation and evaluation of educational initiatives for both health care consumers and health care providers.     

Paramedic and Emergency Medical Technicians Views on Opportunities and Challenges When Forgoing and Halting Resuscitation in the Field

Objectives:  The objective was to assess paramedic and emergency medical technicians (EMT) perspectives and decision-making after a policy change that allows forgoing or halting resuscitation in prehospital atraumatic cardiac arrest.
Methods:  Five semistructured focus groups were conducted with 34 paramedics and 2 EMTs from emergency medical services (EMS) agencies within Los Angeles County (LAC), 6 months after a policy change that allowed paramedics to forgo or halt resuscitation in the field under certain circumstances.
Results:  Participants had an overwhelmingly positive view of the policy; felt it empowered their decision-making abilities; and thought the benefits to patients, family, EMS, and the public outweighed the risks. Except under certain circumstances, such as when the body was in public view or when family members did not appear emotionally prepared to have the body left on scene, they felt the policy improved care. Assuming that certain patient characteristics were present, decisions by paramedics about implementing the policy in the field involve many factors, including knowledge and comfort with the new policy, family characteristics (e.g., agreement), and logistics regarding the place of arrest (e.g., size of space). Paramedic and EMT experiences with and attitudes toward forgoing resuscitation, as well as group dynamics among EMS leadership, providers, police, and ED staff, also play a role.
Conclusions:  Participants view the ability to forgo or halt resuscitation in the field as empowering and do not believe it presents harm to patients or families under most circumstances. Factors other than patient clinical characteristics, such as knowledge and attitudes toward the policy, family emotional preparedness, and location of arrest, affect whether paramedics will implement it.     

Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease

Although recent studies have focused on life-sustaining treatment (LST) decision-making by families, research has not examined such decision-making as an aspect of ongoing caregiving by family caregivers. This article focuses on factors associated with family caregiver role strain and ease in LST decision-making. Using content analysis, factors were derived from interview data gathered from 17 family caregivers who had made LST decisions for 16 elderly ill relatives. The factors are incorporated in a framework, The Family Caregiving Process in Making LST Decisions for Elderly Ill Relatives, and fall under four key roles--caregiver, elderly ill relative, other family members, and health care providers. Factors affecting the strain and ease felt by family caregivers exist not only during the actual decision-making period, but also arise during the days, months, and years prior to the event and continue on after the LST decisions have been made. Nurses' knowledge of these factors can help nurses decrease family caregiver strain and increase ease during the family caregiver LST decision-making process.     

Congruence of Decisions Between Patients and Their Potential Surrogates About Life-Sustaining Therapies

Decisions concerning life-sustaining treatments and the congruence in decision-making between patients and potential surrogates were examined. The ability of a patient-chosen surrogate to make decisions reflecting the wishes of that patient was estimated. Thirty patient-surrogate pairs independently responded to vignettes of five treatments. Patients and surrogates made similar decisions on all treatments except cancer chemotherapy, for which surrogates were significantly more likely to choose treatment when patients would have them refuse. The findings can assist patients and clinicians in choosing a surrogate whose decision-making corresponds with patient choices.     

Therapeutic drug monitoring: linezolid too?

There are a number of studies providing evidence that age is associated with treatment decisions for critically ill adults, although most of these studies have been unable to fully account for both prehospital health status and severity of acute illness. In the previous issue of Critical Care, Turnbull and colleagues present a well-executed study analyzing data from a prospective cohort study of critically ill patients with acute respiratory distress syndrome to investigate the association between age and new limitations in life-sustaining therapy. They report a strong association between age and new limitations in life support in this cohort, even after adjusting for comorbidities, prehospital functional status, and severity of illness including daily organ dysfunction scores. Their results demonstrate that decisions about the goals of care and the ongoing use of life-sustaining treatments should be viewed as dynamic and responsive to events occurring during critical illness. This study raises the important question about the contributors to this association, and the authors raise the possibility that physician or surrogate bias may be contributing to decisions for older patients. While this is unlikely to be the only contributor to the association between age and end-of-life decisions, the mere possibility should prompt reflection on the part of clinicians caring for critically ill patients.     

Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan

There is a dearth of information in the literature about the concordance of preferences for end-of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals and life-sustaining treatments between Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients–family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care and preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life. To effect real change and to gain increased agreement on preferences for end-of-life care, an open dialogue between patients and their primary family caregivers should become standard.     

Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making, and life-sustaining therapy

To identify the wishes of patients with amyotrophic lateral sclerosis (ALS) for information, participation in decision making, and life-sustaining therapy and to determine whether these wishes are stable over time, we conducted a prospective survey (baseline and 6-month follow-up interviews) of 38 consecutive patients with an established diagnosis of ALS at the University of Chicago Motor Neuron Disease Clinic. Demographic data, clinical stage of ALS, illness experience, wishes for information, and desires for participating in decisions about life-sustaining therapy were elicited. Patients readily expressed their wishes for specific information on communication aids and ventilator care for respiratory failure. Demographic, socioeconomic, and clinical characteristics did not predict patients' desires for information and decision making. The preferences for information and participation in decisions were stable during the 6-month study period, whereas preferences for cardiopulmonary resuscitation in two hypothetical circumstances were less stable. Changes were unrelated to demographic or clinical characteristics of the patients. Because many patients with ALS change their preferences for life-sustaining therapy, advance directives for end-of-life care must be reevaluated periodically.     

French intensivists do not apply American recommendations regarding decisions to forgo life-sustaining therapy

OBJECTIVE: Recommendations for making and implementing decisions to forgo life-sustaining therapy in intensive care units have been developed in the United States, but the extent that they are realized in practice has yet to be measured. DESIGN: Prospective, multicenter, 4-wk study. For each patient with an implemented decision to forgo life-sustaining therapy, the deliberation and decision implementation procedures were recorded. SETTING: French intensive care units. PATIENTS: All consecutive patients admitted to 26 French intensive care units. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 1,009 patients admitted, 208 died in the intensive care unit. A decision to forgo life-sustaining therapy was implemented in 105 patients. The number of supportive treatments forgone was 2.3 +/- 1.7 per patient. Decisions to forgo sustaining therapy were preceded by 3.5 +/- 2.5 deliberation sessions. Proxies were informed of the deliberations in 62 (59.1%) cases but participated in only 18 (17.1%) decisions. The patient's perception of his or her quality of life was rarely evaluated (11.5%), and only rarely did the decision involve evaluating the patient's wishes (7.6%), the patient's religious values (7.6%), or the cost of treatment (7.6%). Factors most frequently evaluated were medical team advice (95.3%), predicted reversibility of acute disease (90.5%), underlying disease severity (83.9%), and the patient's quality of life as evaluated by caregivers (80.1%). CONCLUSIONS: A decision to withhold or withdraw life-sustaining therapy was implemented for half the patients who died in the French intensive care units studied. In many cases, the decision was taken without regard for one or more factors identified as relevant in U.S. guidelines.     

Perspectives of Elderly People on Advance Directives in Japan

PURPOSE: To examine perspectives of Japanese elderly people on advance directives (ADs) and factors related to positive attitudes toward ADs. METHOD: The data were collected by a structured questionnaire from 313 of 565 older adult members of senior citizens' centers in two cities in Japan. Survey items pertained to demographic characteristics, terminal care preferences, and personal values, including autonomy, family function, and religious piety. FINDINGS: Of the 313 elderly people who completed questionnaires, 72.9% had positive preferences for executing living wills. With regard to durable power of attorney for health care, 62.2% approved of it. The supporters of ADs were more likely to have had discussions about terminal care with family members or physicians, experience of a family member hospitalized for terminal illness or injury, preferences for life-sustaining treatments that were self-determined, and personal values such as religious piety. The relationship between positive preferences toward durable power of attorney for health care and sex, marital status, and living arrangements were significant. CONCLUSIONS: Most Japanese older adults in this study approved of ADs, and family structure was important to the acceptance of designating a proxy. Discussion about end-of-life care and respect for life-sustaining treatment preferences are important decisions, about the end of life.     

Actual and perceived gender differences in the accuracy of surrogate decisions about life-sustaining medical treatment among older spouses

This study examined the influence of surrogate gender on the accuracy of substituted judgments about the use of life-sustaining treatment in a sample of 249 older adults and their self-selected surrogate decision-makers. Overall, wives were more accurate than husbands at predicting their spouses' treatment wishes. Surrogates' perceptions of their own abilities did not differ by gender but, among patients, husbands had more confidence than wives in their spouses' accuracy as, and comfort being, a surrogate. The results are discussed within the context of broader gender differences in caregiving and highlight the need for more research regarding predictors of surrogate accuracy to assist patients in selecting surrogates who will help protect their end of life wishes.     

Special challenges of withholding artificial nutrition and hydration

Despite society's increasing understanding of and comfort with end-of-life decision-making, questions about the appropriate use of artificial hydration and nutrition remain particularly challenging to both professional and family members. These decisions are complicated by misunderstandings about likely benefits and burdens, concern about patient suffering, and ambivalence regarding the moral status of feeding. Data regarding the effectiveness of tube feedings in terms of prolonging survival, improving wound healing, or preventing aspiration do not support the widespread use of this intervention in states of severe dementia or end-stage disease. Further, there is evidence that withholding feeding is not associated with suffering, so long as adequate mouth care and desired sips of water are provided. Nonetheless, surveys of both long-term care residents and family members of persons with dementia indicate that at least 30% to 50% of those queried expresses a preference for artificial feeding if they (or their relative) could not eat. Given the absence of conclusive data about the efficacy of feeding and the apparent plurality of values surrounding the provision of this intervention, health professional must focus efforts on using a careful, deliberate approach to decision-making that involves all interested parties and make use of valid empirical data.     

The Association of Surrogate Decision Makers' Religious and Spiritual Beliefs With End-of-Life Decisions

ContextAlthough religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life-sustaining treatments.ObjectivesTo determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates.MethodsThis prospective observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2 and 10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange six months after enrollment identified the use of life-sustaining treatments and hospice for patients who died.ResultsThere were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for do-not-resuscitate status (adjusted odds ratio [aOR] 0.39; 95% CI 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66; 95% CI 0.45, 0.97). Belief in miracles (aOR 0.30; 95% CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70; 95% CI 0.53, 0.93) were associated with lower hospice utilization.ConclusionFew religious variables are associated with end-of-life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training.     

Surrogate decision-maker for end-of-life care in terminally ill patients at Chiang Mai University Hospital, Thailand

Surrogate decision-maker for end-of-life care is indicated at certain points during care for patients with terminal illnesses. This study aimed at identifying person(s) to whom northern Thai patients with terminal illnesses wished to transfer their decisions on end-of-life care and for cardiopulmonary resuscitation. From interviews with 152 eligible subjects, 57.2% had a high regard for their physicians' authority in making decisions on end-of-life care, 28.3% transferred their decisions to relative(s) and only 14.5% opted for shared decision-making among relative(s) and physicians. In the provision of cardiopulmonary resuscitation, 44.1% of subjects expressed a desire for family to make decisions together with physicians, 33.6% gave directives to the family alone and only 22.4% transferred their decisions to physicians. The differences that were observed in patients' preferences between the two situations indicate that patients should be assessed individually and adequate information for decision-making should be provided.     

NEWS AND NOTES

This study examined the influence of surrogate gender on the accuracy of substituted judgments about the use of life-sustaining treatment in a sample of 249 older adults and their self-selected surrogate decision-makers. Overall, wives were more accurate than husbands at predicting their spouses' treatment wishes. Surrogates' perceptions of their own abilities did not differ by gender but, among patients, husbands had more confidence than wives in their spouses' accuracy as, and comfort being, a surrogate. The results are discussed within the context of broader gender differences in caregiving and highlight the need for more research regarding predictors of surrogate accuracy to assist patients in selecting surrogates who will help protect their end of life wishes.