Missed Opportunities in Providing Palliative Care for the Urban Poor: A Case Discussion

Introduction

Palliative care consultations are often requested late in the course of illness.^1,2 This is often the case for the urban poor. Disparities in access and mistrust of the health care system often complicate care provided to this population. Recent efforts have focused attention on the benefits of palliative care early in the disease course.^3–5 Here we describe a common clinical scenario involving palliative care in an underserved setting and complications arising from late palliative care consultation in such cases.

Case Report

A 60-year-old Latino woman with hypertension and dyslipidemia presented to the emergency department of a large, academic medical center from an outpatient community clinic for evaluation of weight loss and cachexia. The patient also reported symptoms of decreased appetite, 2 weeks of bowel and bladder incontinence, 2 weeks of diarrhea, generalized weakness for 2 years, and a chronic dry cough. She reported being able to ambulate without assistance, but with increasing exercise intolerance. She had a 40 pack-year smoking history and a history of alcohol abuse, although the extent of alcohol consumption was unknown.

The patient was admitted to the internal medicine service. She had no known resuscitation preferences and had not appointed a health care agent. The electronic medical record revealed that 8 and 3 years prior to this admission she had had primary care visits and chest radiographs for work-up of weight loss. The first chest radiograph was normal, the second revealed soft tissue wasting. Although a primary care physician who had seen her in the past sent the patient to the emergency department, there had been a 2-year gap in outpatient follow-up. Later in the admission, her family reported that she had lost hope that a cause for her symptoms would be found and as a consequence had stopped going to see her doctors.

On initial presentation, she was a thin female with temporal wasting, pallor and thin hair. Laboratory results were notable for hemoglobin 8.3 g/dL, platelet count 153 k/μL, prothrombin time 13.8 seconds, activated partial thromboplastin time 29.2 seconds, creatinine 2.8 mg/dL, potassium 2.1 mEq/L, albumin 2.2 g/dL, total bilirubin 1.7 mg/dL, direct bilirubin 1.0 mg/dL, serum glutamic oxaloacetic transaminase (SGOT; aspartate aminotransferase [AST]) 49 U/L, and serum glutamic pyruvic transaminase (SGPT; alanine transaminase [ALT]) 15 U/L. Chest radiograph was unremarkable. Abdominal ultrasound revealed an echogenic liver consistent with parenchymal liver disease, a small amount of ascites, contracted gallbladder with stones, and a patent portal vein. Clostridium difficile toxin was positive and she was started on metronidazole. A malignancy and immune deficiency work-up was initiated along with placement of a tuberculin PPD.

On the second day of admission, the patient reported feeling short of breath. Clinically her oxygen saturation was 90% and respiratory rate 18 beats per minute. Repeat chest radiograph was unremarkable. Pulmonary perfusion study was negative for pulmonary embolism and revealed chronic lung disease. Echocardiogram revealed normal left ventricular ejection fraction and mild to moderate pulmonary hypertension. Later in the day, the patient had worsening respiratory distress and the hospital critical care service was consulted; she required endotracheal intubation and was started on continuous intravenous dopamine. She was diagnosed with sepsis secondary to C. difficile infection and pneumonia. The patient was transferred to the critical care unit.

The patient's renal function worsened while in the critical care unit and hemodialysis was initiated, which she did not tolerate often due to hypotension and intermittently required blood pressure support. Laboratory testing was consistent with chronic disseminated intravascular coagulation (DIC). All respiratory and blood culture results were negative during the admission. A urine culture collected on admission day 6 grew Proteus mirabilis and Escherichia coli; subsequent urine cultures were negative. The patient initially presented with a history of chronic, unexplained constitutional symptoms. This, along with laboratory testing that revealed significant elevations of CA-125 and carcinoembryonic antigen (CEA) levels, strongly suggested an undiagnosed malignancy. Computed tomography of the abdomen without intravenous contrast revealed a porcelain gallbladder with dense gallstones. Gastroenterology was consulted and did not feel the appearance of the gallbladder was consistent with malignancy. No other testing revealed a possible site of primary malignancy. Table 1 includes additional laboratory results.

The patient was unable to be weaned from the ventilator, despite multiple trials. On admission day 20, a tracheostomy was placed. The patient had bleeding from the tracheostomy and required transfusion with packed red blood cells. On admission day 23, the patient was transferred to the internal medicine floor on the ventilator, on a continuous infusion of intravenous fentanyl, off blood pressure support, still requiring hemodialysis. The patient continued to have bleeding from the tracheostomy site and began to have melena. Ventilator weaning trials continued but remained unsuccessful. The primary team transitioned her off the continuous infusion of intravenous fentanyl to a fentanyl patch. On admission day 24, the primary medicine team met with the patient's family who reported that the patient had been losing weight for years but the doctors could not figure out why, so she stopped seeing her doctors. The same day, the critical care attending physician met with the family and informed them of the poor prognosis likely secondary to multidrug-resistant infection and undiagnosed malignancy. He recommended a palliative care consultation. At this point, the patient was awake on the ventilator, able to answer some basic yes/no questions, and follow some commands. The primary team physicians had determined that she could not participate in a meaningful way in goals of care discussions. On admission day 29, the primary medicine team met with the patient's husband and daughter and determined that the family understood the patient's poor prognosis and little chance for recovery. They expressed concern that she was suffering and were considering withdrawal of mechanical ventilation.

On admission day 30, the palliative care team was consulted. Clinically, the patient was cachectic, opened her eyes intermittently, was tachycardic, had a normal respiratory rate on mechanical ventilation, followed some basic commands, and appeared anxious. Her platelet count was 60 k/μL, hemoglobin 7.2 g/dL, and creatinine 3.0 mg/dL. The palliative care team recommended stopping the fentanyl patch and changing back to continuous intravenous fentanyl for easier titration for comfort and adding around-the-clock intravenous lorazepam for agitation. The hospice and palliative medicine fellow and the primary team senior resident met with the patient's husband and daughter. Based on the patient's values and beliefs, the family said they wanted palliative extubation, a do-not-resuscitate order, and to stop artificial nutrition and dialysis. The patient's son was unable to attend the meeting, but the family said he was in agreement with the decision. The patient was transferred to the hospital's inpatient palliative care unit on admission day 33. On admission day 34 the palliative care social worker and physician's assistant met with the family to clarify the plan of care further. According to the social worker, the family seemed satisfied with the patient's current medical management and was under the impression that the physician would make further medical decisions. In response, the clinical team described the process of ventilator withdrawal and alternative options, including discharge to a nursing home on the ventilator. A follow-up family meeting was held on admission day 41 and the family expressed wishes for ventilator withdrawal that day. They spent time with the patient, and then left the hospital because they did not want to be present for the extubation. Palliative extubation was performed that day and the patient was able to breath on her own afterwards. The intravenous fentanyl and around-the-clock intravenous lorazepam were continued. She was started on a scopolamine patch and intravenous glycopyrrolate for oropharyngeal secretions. The family visited the next day and felt she appeared comfortable, and she died on admission day 43.

Discussion

This case illustrates many patients' and families' experience with medical care in urban underserved settings in the United States. The outpatient care and hospital course were notable for a failure of diagnosis, mistrust of the health care system, and late discussion of advance directives and end-of-life care. Per the family, the patient had weight loss and functional decline for years and had given up on the health care system determining an underlying cause. When she presented to the emergency department at the urging of the outpatient physician who had seen her, she was ambulatory and able to communicate. By hospital day #30 she had ventilator-dependent chronic respiratory failure, chronic DIC, and acute kidney injury requiring dialysis. There was no hospital documentation of conversations with the patient regarding her preferences for medical care prior to developing acute respiratory failure requiring mechanical ventilation.

Challenges to providing palliative care in urban underserved settings include lack of health insurance, financial and health disparities, cultural diversity, language barriers, mistrust of the health care system, and lack of awareness of hospice services.^6,10 The patient described was admitted to a large urban hospital that provides medical care to a racially and culturally diverse population. According to Searight and Gafford, ⁷ there are three different aspects of end-of-life care that tend to vary among cultures: (1) preferences for communicating bad news, (2) attitudes toward advance directives and end-of-life care, and (3) patients' and families' decision-making processes. For example, studies have shown that completion of advance directives is significantly lower among Asians, Hispanics, and African Americans compared to whites. ⁷ In one study, Hispanics were significantly less comfortable talking about end-of-life care and more likely to feel that appointing a health care agent was unnecessary when family is involved. In the same study, white subjects were more likely to have assigned a health care agent than African-Americans and Hispanics. ⁸

It has been suggested that people with barriers to access to medical care are often reluctant to choose palliative care at the end of life because of lack of technologically advanced treatments earlier in the course of illness. ⁹ One survey revealed that inner-city African Americans and Latinos were receptive to end-of-life care that would minimize caregiver burden and provide spiritual support, but cited lack of awareness of hospice, prohibitive costs of health care, language barriers, and mistrust of the system as barriers to hospice care. ¹⁰

One current focus of palliative medicine is integrating curative treatment with palliative interventions early in the course of life-limiting illness. When provided early in the course of illness, palliative care would be less likely viewed as a last resort and would also allow more time for patients to experience the benefits of palliative care involvement, such as improved quality of life ( ³ ). In a 2001 article, The Robert Wood Johnson Foundation (RWJF) suggested integrating palliative care into medical education and training of health professionals. ⁹ Since then, residency training programs, medical schools, and nursing schools are including palliative care in curricula. An example of this is the Northern Ohio Universities Colleges of Medicine and Pharmacy in which palliative care is integrated into all 4 years of the medical undergraduate program ( ¹¹ ). In this way, more health care providers would have exposure to palliative care in their training and better understand the importance of providing palliative care early in the course of illness.

The RWJF also suggested implementing pilot programs to improve access to palliative care services for the poor and disenfranchised. ⁹ One demonstration project in Alabama, called the Balm of Gilead Project, developed a model of care to provide palliative care across multiple settings in the safety net system, including an inpatient palliative care unit, nursing homes, community residential settings, and a home hospice program. This project's inpatient unit provided care for patients with terminal illness who did not have homes or adequate support at home. The project was funded in part by the Initiative for Excellence in End-of-Life Care of the RWJF and involved a partnership between a hospital, county department of health, community volunteer care teams and community outreach programs.^12,13 Collaborations with palliative care services in diverse settings would increase exposure and access to palliative care for patients, communities, and health care providers.

Another study proposed early identification of patients in urban primary care settings who could benefit from palliative care services, including those meeting one or more criteria such as unintentional weight loss of 10% or more of body weight over the last year. ⁴ In this case report, the electronic medical record revealed that the patient had imaging studies starting several years prior to death for the reason “weight loss.” Although no diagnosis was determined, this may have been a missed opportunity for the primary care physician to initiate a conversation about goals of care and palliative care with the patient and her family.

Conclusion

There are well-described barriers to providing medical care, including palliative care, to the urban poor.^6,10,14 The case described illustrates a patient admitted to an urban hospital who had lost interest in receiving health care because of ongoing unexplained weight loss, clinically deteriorated rapidly before a discussion of goals of care, and a family meeting 30 days later revealed that the family did not want her to suffer and felt that she would not want prolongation of her life via artificial means. Potential solutions to the challenges of providing palliative care in urban underserved settings include: (1) disseminating palliative care principles into the education of diverse health care professionals, (2) introduction to palliative care earlier in the course of illness, and (3) improving access to palliative care services in diverse settings of the safety-net system. Some projects with a focus on improving awareness and access to palliative care for the urban poor are currently underway. Future directions should include developing similar projects in other underserved settings and research involving cost-effectiveness and quality of care measures for such models of care. The patient in this case would likely have benefited from early introduction to palliative care, including goals of care discussions, in the outpatient setting as well as on the first day of hospitalization.