Severe illness necessitating admission to the hospital can be a time of great emotional and physical vulnerability for all patients. This vulnerability is compounded when medical illness is complicated by social circumstances such as poverty, social isolation, minority status, legal difficulties, mental disability, or chemical dependence. Evidence suggests that those living at 200% below the poverty level have a higher rate of hospitalization and receive a lower standard of care while hospitalized.^1,2

This chapter highlights issues and challenges that arise in the care of hospitalized socially complicated patients, including initial evaluation in the emergency department (ED), ongoing care throughout the hospital course, and transition planning from the hospital.

Health-care systems and customs vary so widely across the globe that it is difficult to compare hospitalization practices and rates from one country to the next. Access to care, the number of hospital beds, the primary care infrastructure, the management of mental illness and long-term care (LTC), and the underlying health of the population all contribute to trends in hospital care.

In the United States, one of the most notable features of hospital care is its cost: hospital costs accounted for 29% of the total resources spent in 2010, the largest single share in the care system. Yet hospital utilization accounted for only 7% of the care delivered.¹ Despite no change in the age-adjusted number of hospitalizations between 1997 and 2011, inflation-adjusted hospital costs increased by 60% for all conditions.²

Poor patients have a hospitalization rate nearly twice that of the non-poor.² Among the uninsured, regardless of age, 3 of the top 10 most common reasons to be admitted in the United States involve substance abuse or mental health conditions.¹ Ironically, these higher rates of admission represent delivery of the most expensive care to those who have been deprived of more cost-effective preventive measures in the ambulatory setting.

Among the vulnerable, issues such as unstable housing, limited access to outpatient health providers, insufficient financial resources, social isolation, and a fundamental distrust of institutional intrusion into personal life make the transition from acute hospitalization to outpatient care exceedingly challenging. These factors contribute to a longer length of stay of poor patients compared with the non-poor (5.1 days versus 3.7 days, respectively).²

For many patients with limited financial and social resources, the ED is the sole option for medical care. Such patients often present for care only when they suffer from symptoms that prevent them from continuing their usual activities. Rapid collection and effective exchange of information between patient and provider is central to the delivery of quality care in the ED. Discordant language abilities between patient and provider is a tangible barrier to effective communication (see Chapter 31), yet trained interpreters are rarely used. Multiple studies demonstrate that non–English-speaking patients report less satisfaction with ED care, have a more limited understanding of their diagnosis and treatment plan, are submitted to increased numbers of diagnostic and laboratory tests, and are ultimately admitted to the hospital with higher frequency than English-speaking patients with the same chief complaint.^3,4,5

Provider bias can contribute to treatment differences between white and non-white patients presenting to the ED with the same condition. For example, studies have found that Hispanic patients with long bone fractures received less analgesia than white patients,⁶ and poor patients are often thought to be substance users even when they are not.⁷ Thus, the patient–provider interaction in the ED is of signal importance.

In the ED, one of the most pressing questions is, “Does this patient’s clinical condition require hospitalization in order to properly manage it?” The answer to this ­question requires a global assessment of the patient’s social ­circumstances and his/her access to resources that support self-care, safe administration of medications, and the ability to seek help should the proposed treatment fail. The threshold for admission is often appropriately lowered for those with limited support and challenging social situations.

During a hospitalization, even the most engaged, activated, and empowered individuals can experience feelings of abandonment, loss of control, and vulnerability around their illness and their care. The structure and routine of the hospital day is organized for the convenience of the medical and nursing staff, and many patients, regardless of their social standing, complain about the disruptions imposed upon them—being awakened at all hours of the night, long waits for assistance, and lack of privacy. Building and maintaining trust is difficult in these circumstances, and is one of the central challenges in caring for hospitalized patients.

The inpatient setting is one where the patient is perhaps at greatest risk for what has been called the “tyranny of the urgent,” where the most urgent clinical concerns subvert a provider’s ability to address a patient’s chronic illnesses and pressing nonmedical issues. Pursuit of diagnosis and treatment of acute clinical problems overwhelm considerations of the psychosocial conditions that may contribute to the patient’s illness and recovery. The tyranny of the urgent, ubiquitous in the high-volume, high-acuity setting of a hospital, frequently undermines a thoughtful, interactive, interdisciplinary, and patient-­centered approach to care.

The effects of the tyranny of the urgent can be minimized somewhat when providers concern themselves with more than just the main reason for the clinical visit or hospitalization.⁸ For patients who have limited ability to advocate for themselves or are less empowered, the commitment to creating an environment in which concerns of the patient can be expressed is particularly important. Unfortunately, providers are less likely to involve minority and poor patients in patient care decisions.⁹

The inpatient setting is also fertile terrain for the growth of misunderstandings based on provider biases and assumptions, as well as discordance in belief systems between patients and the health-care team. Ethnic minorities may be wary of public hospitals because of a collective history and experience of disproportionately unjust treatment from other social institutions such as law enforcement agencies, public schools, housing, and work opportunities. Victims of domestic violence, undocumented immigrants, and those who use illegal substances may fear the legal consequences of seeking care or being completely forthcoming about their medical histories. These fears can influence their decisions and behaviors while hospitalized. For example, what appears to the provider to be an irrational refusal of a diagnostic procedure or treatment may seem very rational to the patient who harbors unspoken concerns or fears that the cost of care may lead to financial ruin.

At the time of admission, the patient possesses most of the critical information that needs to be passed on to the provider. During the hospital course, providers accumulate information that in turn need be transmitted and explained effectively to the patient. Such crucial information sharing is often neglected, as in the case of Mr. Garcia.

As this example demonstrates, a crisis can ensue when providers do not engage in thoughtful dialogue with their patients or misinterpret social cues for biological ones. Any factor that hinders patients’ ability to advocate for themselves, whether physical, emotional, or social, heightens their vulnerability when they interact with the health-care team. At the core of any potential solution is an awareness of the challenges faced by patients and the willingness and competence of the providers to address them.

In some scenarios, being truly patient-centered may require more provider-directed care. The nature and degree of a patient’s involvement and ability to engage in shared decision making may vary from day to day depending on the progress and trajectory of illness. One particularly vexing situation for the inpatient practitioner is when the patient is not capable of making shared decisions. When a patient refuses or cannot truly consent to treatment, it is important for the team to elucidate and address underlying issues in order to allow the patient and team to move forward with an agreed-upon plan of care. In some cases, however, the practitioner may question the patient’s decision-making capacity to accept or refuse treatment.

Determining decision-making capacity is a frequently encountered, complex issue in hospital care that requires a thoughtful, systematic approach by providers. All capacity assessments are made only in the context of specific decisions and clinical scenarios. Determining capacity is not a global judgment of the patient’s ability to speak on his/her own behalf. Patients with mental illness, substance abuse, and mild forms of dementia retain both the ability to make autonomous decisions and the legal right to do so.^10,10a The vast majority of capacity assessments are performed when patients refuse a provider’s recommendation. Ironically, patients with questionable capacity who comply with recommendations are not generally assessed for their decision making. An incapacitated patient’s consent to treatment has been termed “illusory consent.”¹⁰ This reflects providers’ comfort in placing beneficence (“Let’s make this intervention; I think it will help even if his cognition seems a little off”) over self-determination or patient autonomy (“He is agreeing with my recommendation, but I want to be sure he has capacity to make this decision”).

Assessing capacity requires that the provider make a determination about the patient’s (1) awareness of his or her medical situation; (2) appreciation for the relative benefits and risks inherent in the treatment plan; (3) understanding of the consequences of forgoing treatment; (4) understanding of alternatives; and (5) ability to rationally articulate the decision and its consequences (see “Core Competency”).

Decision-making capacity can be a dynamic state, waxing and waning with the condition of the patient. If the clinician questions the patient’s ability to do any of these steps, he or she should review methods of increasing capacity (see Box 44-1). Patients need to have a greater comprehension of the risks and benefits when the treatment is more uncertain, involves several therapeutic options, or is not necessary to sustain life.^10c It is advisable for the provider to document this discussion in the chart and communicate this to the patient’s other providers (see Box 44-2).

The evaluation of capacity can yield one of two outcomes for the patient refusing treatment. The provider may conclude the patient has capacity. In this case, if the patient continues to refuse treatment, then the provider is obligated to respect the patient’s autonomy and not pursue the proposed intervention.

MEDICAL PROBATE

If the patient is deemed to lack decision-making capacity about a treatment that clinicians feel is beneficial but not emergently required, and there are no advance directives or surrogate decision makers who can consent on the patient’s behalf, then it is appropriate to seek court adjudication formalizing that plan to proceed with care against the patient’s wishes.

In some parts of the United States, providers may apply to the public guardianship courts to grant a petition for medical probate. If granted by the court, medical probate authorizes the medical team to serve as a surrogate decision maker for the patient for issues relevant to the medical care of the patient. If the patient demonstrates capacity for other medical decisions, then the medical probate does not override his or her autonomy in that realm. Medical probate does not allow providers to use psychoactive medicines to treat an underlying psychiatric illness against the patient’s will. Such powers require an alternative formal petition and hearing by the courts. And medical probate does not allow providers to make decisions about housing or placement in rehabilitation facilities against the patient’s will. These decisions require court authority provided through the conservatorship process.

For questions or concerns around appropriateness of legal holds or conservator processes, we always recommend to always involve your institution’s risk management department or equivalent legal counsel.

CAPACITY VERSUS COMPETENCE

Although often used synonymously, medical decision-making “capacity” and “competence” are distinctly different entities. Capacity is the ability of a person to understand and make medical decisions based upon that understanding. Providers make this determination through the approach discussed earlier. Competence, on the other hand, is a legal determination, and refers to the ability not only to comprehend but also to act upon that comprehension. Competence encompasses the ability to successfully manage physical, emotional, and financial health. Competence requires a person to have “sufficient ability or skill” and the legal authority to exercise it.¹¹ Decision-making, cognition, psychiatric stability, and functional abilities all contribute to competence. The courts, usually through the public guardian’s office, oversee determination of competence. The competency assessment will inform the patient’s access to financial tools, such as pensions or general assistance, while also informing placement options.¹² A patient may be deemed incompetent to manage his or her financial affairs, yet retain sufficient decision-making capacity to consent to medical treatment, such as a colonoscopy.

The majority of hospital discharges occur under safe circumstances, with the patient and treating providers in agreement that necessary inpatient evaluation and treatment is complete. Up to 2% of hospital discharges, however, may be considered against medical advice (AMA) or absent without leave (AWOL) discharges.¹³ The hospital-based provider should be aware of the definitions, risks, and appropriate steps surrounding these often challenging situations.

AGAINST MEDICAL ADVICE

AMA discharge occurs when an adult patient with medical decision-making capacity voluntarily decides to leave the hospital before the treating provider recommends discharge.¹³ This requires a discussion between the patient and the provider about the benefits of continuing hospitalization, potential risks of premature leaving, and alternative discharge options. Patient predictors of AMA discharge include lower socioeconomic class, male sex, younger age, publicly subsidized or no insurance, substance abuse, prior history of AMA, and lack of a primary care physician.^14,15 AMA discharge has been associated with increased readmissions,¹⁶ morbidity, and mortality.¹⁷ Physicians faced with this type of discharge may struggle with a desire to respect principles of patient autonomy while continuing to act in a manner they feel is best for the patient’s health. Many hospitals ask or require patients leaving AMA to sign specialized discharge forms, though there exists no clear legal basis for this formality.¹⁸ The creation of a potentially adversarial relationship at the time of discharge has the potential to erode patient trust and willingness to return for care. It is important in these situations not to sacrifice the therapeutic alliance. Providers should continue to plan, as best able, for a safe and successful discharge including discussion of alternative (though potentially suboptimal) treatment options, coordination with social services, scheduling outpatient follow-up, and filling needed prescriptions.

ABSENT WITHOUT LEAVE