Case Discussions in Palliative MedicineFeature Editor: Craig D. Blinderman

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

Melissa A. Bender, MD,1 Elizabeth Clarke, LCSW,2

Rose M. Guilbe, MD,3,4 and Peter A. Selwyn, MD, MPH3,4

Abstract

Background: We report the case of a woman with chronic, unexplained symptoms admitted to a large urbanhospital, whose clinical status declined rapidly without a definite underlying diagnosis, and who died 2 daysafter palliative extubation.Conclusion: This case illustrates some of the challenges that patients, families, caregivers, and medical teams facein cases of serious life-limiting illness in the disenfranchised poor. Proposed solutions to these challenges includeintroduction to palliative care earlier in the course of illness and improved access to palliative care in medicalsafety-net settings.

Introduction

Palliative care consultations are often requested latein the course of illness.1,2 This is often the case for the

urban poor. Disparities in access and mistrust of the healthcare system often complicate care provided to this population.Recent efforts have focused attention on the benefits of palli-ative care early in the disease course.3–5 Here we describea common clinical scenario involving palliative care in anunderserved setting and complications arising from latepalliative care consultation in such cases.

Case Report

A 60-year-old Latino woman with hypertension and dys-lipidemia presented to the emergency department of a large,academic medical center from an outpatient community clinicfor evaluation of weight loss and cachexia. The patient alsoreported symptoms of decreased appetite, 2 weeks of boweland bladder incontinence, 2 weeks of diarrhea, generalizedweakness for 2 years, and a chronic dry cough. She reportedbeing able to ambulate without assistance, but with increasingexercise intolerance. She had a 40 pack-year smoking historyand a history of alcohol abuse, although the extent of alcoholconsumption was unknown.

The patient was admitted to the internal medicine service.She had no known resuscitation preferences and had notappointed a health care agent. The electronic medical recordrevealed that 8 and 3 years prior to this admission she had hadprimary care visits and chest radiographs for work-up of

weight loss. The first chest radiograph was normal, the secondrevealed soft tissue wasting. Although a primary care physi-cian who had seen her in the past sent the patient to theemergency department, there had been a 2-year gap in out-patient follow-up. Later in the admission, her family reportedthat she had lost hope that a cause for her symptoms would befound and as a consequence had stopped going to see herdoctors.

On initial presentation, she was a thin female with temporalwasting, pallor and thin hair. Laboratory results were notablefor hemoglobin 8.3 g/dL, platelet count 153 k/lL, prothrom-bin time 13.8 seconds, activated partial thromboplastin time29.2 seconds, creatinine 2.8 mg/dL, potassium 2.1 mEq/L,albumin 2.2 g/dL, total bilirubin 1.7 mg/dL, direct bilirubin1.0 mg/dL, serum glutamic oxaloacetic transaminase (SGOT;aspartate aminotransferase [AST]) 49 U/L, and serumglutamic pyruvic transaminase (SGPT; alanine transaminase[ALT]) 15 U/L. Chest radiograph was unremarkable. Ab-dominal ultrasound revealed an echogenic liver consistentwith 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 onmetronidazole. A malignancy and immune deficiency work-up was initiated along with placement of a tuberculin PPD.

On the second day of admission, the patient reportedfeeling short of breath. Clinically her oxygen saturation was90% and respiratory rate 18 beats per minute. Repeat chestradiograph was unremarkable. Pulmonary perfusion studywas negative for pulmonary embolism and revealed chronic

1Palliative Care Service, Department of Family Medicine, University of Washington School of Medicine, Seattle, Washington.2CMO-Montefiore Care Management, Yonkers, New York.3Albert Einstein College of Medicine, 4Department of Family and Social Medicine, Palliative Care Program, Montefiore Medical Center,

Bronx, New York.Accepted June 21, 2012.

JOURNAL OF PALLIATIVE MEDICINEVolume 16, Number 5, 2013ª Mary Ann Liebert, Inc.DOI: 10.1089/jpm.2012.0095

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lung disease. Echocardiogram revealed normal left ventricu-lar ejection fraction and mild to moderate pulmonary hyper-tension. Later in the day, the patient had worseningrespiratory distress and the hospital critical care service wasconsulted; she required endotracheal intubation and wasstarted on continuous intravenous dopamine. She was diag-nosed with sepsis secondary to C. difficile infection andpneumonia. The patient was transferred to the critical careunit.

The patient’s renal function worsened while in the criticalcare unit and hemodialysis was initiated, which she did nottolerate often due to hypotension and intermittently requiredblood pressure support. Laboratory testing was consistentwith chronic disseminated intravascular coagulation (DIC).All respiratory and blood culture results were negative duringthe admission. A urine culture collected on admission day 6grew Proteus mirabilis and Escherichia coli; subsequent urinecultures were negative. The patient initially presented with ahistory of chronic, unexplained constitutional symptoms.This, along with laboratory testing that revealed significantelevations of CA-125 and carcinoembryonic antigen (CEA)levels, strongly suggested an undiagnosed malignancy.Computed tomography of the abdomen without intravenouscontrast revealed a porcelain gallbladder with dense gall-stones. Gastroenterology was consulted and did not feel theappearance of the gallbladder was consistent with malig-nancy. No other testing revealed a possible site of primarymalignancy. 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 tracheostomyand required transfusion with packed red blood cells. Onadmission day 23, the patient was transferred to the internalmedicine floor on the ventilator, on a continuous infusion ofintravenous fentanyl, off blood pressure support, still re-quiring hemodialysis. The patient continued to have bleedingfrom the tracheostomy site and began to have melena. Ven-tilator weaning trials continued but remained unsuccessful.The primary team transitioned her off the continuous infusionof intravenous fentanyl to a fentanyl patch. On admission day24, the primary medicine team met with the patient’s familywho reported that the patient had been losing weight for yearsbut the doctors could not figure out why, so she stoppedseeing her doctors. The same day, the critical care attendingphysician met with the family and informed them of the poorprognosis likely secondary to multidrug-resistant infectionand undiagnosed malignancy. He recommended a palliativecare consultation. At this point, the patient was awake on theventilator, able to answer some basic yes/no questions, andfollow some commands. The primary team physicians haddetermined that she could not participate in a meaningfulway in goals of care discussions. On admission day 29, theprimary medicine team met with the patient’s husband anddaughter and determined that the family understood thepatient’s poor prognosis and little chance for recovery. Theyexpressed concern that she was suffering and were consid-ering withdrawal of mechanical ventilation.

On admission day 30, the palliative care team was con-sulted. Clinically, the patient was cachectic, opened her eyesintermittently, was tachycardic, had a normal respiratory rateon mechanical ventilation, followed some basic commands,and appeared anxious. Her platelet count was 60 k/lL, he-moglobin 7.2 g/dL, and creatinine 3.0 mg/dL. The palliativecare team recommended stopping the fentanyl patch andchanging back to continuous intravenous fentanyl for easiertitration for comfort and adding around-the-clock intrave-nous lorazepam for agitation. The hospice and palliativemedicine fellow and the primary team senior resident metwith the patient’s husband and daughter. Based on thepatient’s values and beliefs, the family said they wantedpalliative extubation, a do-not-resuscitate order, and to stopartificial nutrition and dialysis. The patient’s son was unableto attend the meeting, but the family said he was in agreementwith the decision. The patient was transferred to the hospital’sinpatient palliative care unit on admission day 33. On ad-mission day 34 the palliative care social worker and physi-cian’s assistant met with the family to clarify the plan of carefurther. According to the social worker, the family seemedsatisfied with the patient’s current medical management andwas under the impression that the physician would makefurther medical decisions. In response, the clinical team de-scribed the process of ventilator withdrawal and alternativeoptions, including discharge to a nursing home on the venti-lator. A follow-up family meeting was held on admission day41 and the family expressed wishes for ventilator withdrawalthat day. They spent time with the patient, and then left thehospital because they did not want to be present for the ex-tubation. Palliative extubation was performed that day andthe patient was able to breath on her own afterwards. Theintravenous fentanyl and around-the-clock intravenous lor-azepam were continued. She was started on a scopolaminepatch and intravenous glycopyrrolate for oropharyngeal

Table 1. Laboratory Data

VariableReference

rangePatientresults

AFP < 9.10 3.9 ng/mLCA-125 7.0–41.0 96.2 U/mLCEA < 5.1 12 ng/mLCA 19.9 < 35.1 < 1.0 U/mLHIV ½ Ab (EIA) Negative NegativeHepatitis C antibody Negative NegativeHepatitis C viral load Not detected Not detectedHepatitis B viral load Not detected Not detectedHepatitis B surface antigen Negative NegativeANA Negative PositiveANA titer < 1:40 NegativeAnti-GBM antibody Negative NegativeC3 component 70–245 40 mg/dLC4 component 16–56 3 mg/dLANCA Negative NegativeSerum protein

electrophoresisNo monoclonal

proteinUrine protein

electrophoresisNo monoclonal

proteinCeliac panel

Antigliadin IgA–antibody < 20.1 5.5 EU/mLAntigliadin IgG–antibody < 20.1 3.2 EU/mLAntiendomysial–antibody Negative PositivetTG < 21 10 EU/mL

CEA, carcinoembryonic antigen; HIV, human immunodeficiencyvirus; EIA, enzyme immunoassay; ANA, antinuclear antibody;GBM, glioblastoma multiforme; ANCA, antineutrophil cytoplasmicantibodies; tTG, tissue transglutaminase antibody.

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secretions. The family visited the next day and felt she ap-peared comfortable, and she died on admission day 43.

Discussion

This case illustrates many patients’ and families’ experi-ence with medical care in urban underserved settings inthe United States. The outpatient care and hospital coursewere notable for a failure of diagnosis, mistrust of the healthcare system, and late discussion of advance directives andend-of-life care. Per the family, the patient had weight lossand functional decline for years and had given up on thehealth care system determining an underlying cause. Whenshe presented to the emergency department at the urgingof the outpatient physician who had seen her, she wasambulatory and able to communicate. By hospital day #30she had ventilator-dependent chronic respiratory failure,chronic DIC, and acute kidney injury requiring dialysis.There was no hospital documentation of conversations withthe patient regarding her preferences for medical care priorto developing acute respiratory failure requiring mechanicalventilation.

Challenges to providing palliative care in urban under-served settings include lack of health insurance, financial andhealth disparities, cultural diversity, language barriers, mis-trust of the health care system, and lack of awareness ofhospice services.6,10 The patient described was admitted to alarge urban hospital that provides medical care to a raciallyand culturally diverse population. According to Searight andGafford,7 there are three different aspects of end-of-life carethat tend to vary among cultures: (1) preferences for com-municating bad news, (2) attitudes toward advance directivesand end-of-life care, and (3) patients’ and families’ decision-making processes. For example, studies have shown thatcompletion of advance directives is significantly lower amongAsians, Hispanics, and African Americans compared towhites.7 In one study, Hispanics were significantly less com-fortable talking about end-of-life care and more likely to feelthat appointing a health care agent was unnecessary whenfamily is involved. In the same study, white subjects weremore likely to have assigned a health care agent than African-Americans and Hispanics.8

It has been suggested that people with barriers to access tomedical care are often reluctant to choose palliative care at theend of life because of lack of technologically advanced treat-ments earlier in the course of illness.9 One survey revealedthat inner-city African Americans and Latinos were receptiveto end-of-life care that would minimize caregiver burden andprovide spiritual support, but cited lack of awareness ofhospice, 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 integratingcurative treatment with palliative interventions early in thecourse of life-limiting illness. When provided early in thecourse of illness, palliative care would be less likely viewed asa last resort and would also allow more time for patients toexperience the benefits of palliative care involvement, such asimproved quality of life (3). In a 2001 article, The Robert WoodJohnson Foundation (RWJF) suggested integrating palliativecare into medical education and training of health profes-sionals.9 Since then, residency training programs, medicalschools, and nursing schools are including palliative care in

curricula. An example of this is the Northern Ohio Uni-versities Colleges of Medicine and Pharmacy in which palli-ative care is integrated into all 4 years of the medicalundergraduate program (11). In this way, more health careproviders would have exposure to palliative care in theirtraining and better understand the importance of providingpalliative care early in the course of illness.

The RWJF also suggested implementing pilot programs toimprove access to palliative care services for the poor anddisenfranchised.9 One demonstration project in Alabama,called the Balm of Gilead Project, developed a model of care toprovide palliative care across multiple settings in the safetynet system, including an inpatient palliative care unit, nursinghomes, community residential settings, and a home hospiceprogram. This project’s inpatient unit provided care forpatients with terminal illness who did not have homes oradequate support at home. The project was funded in part bythe Initiative for Excellence in End-of-Life Care of the RWJFand involved a partnership between a hospital, county de-partment of health, community volunteer care teams andcommunity outreach programs.12,13 Collaborations withpalliative care services in diverse settings would increaseexposure and access to palliative care for patients, commu-nities, and health care providers.

Another study proposed early identification of patients inurban primary care settings who could benefit from palliativecare services, including those meeting one or more criteriasuch as unintentional weight loss of 10% or more of bodyweight over the last year.4 In this case report, the electronicmedical record revealed that the patient had imaging studiesstarting several years prior to death for the reason ‘‘weightloss.’’ Although no diagnosis was determined, this may havebeen a missed opportunity for the primary care physician toinitiate a conversation about goals of care and palliative carewith the patient and her family.

Conclusion

There are well-described barriers to providing medicalcare, including palliative care, to the urban poor.6,10,14 Thecase described illustrates a patient admitted to an urbanhospital who had lost interest in receiving health care be-cause of ongoing unexplained weight loss, clinically deteri-orated rapidly before a discussion of goals of care, and afamily meeting 30 days later revealed that the family did notwant her to suffer and felt that she would not want prolon-gation of her life via artificial means. Potential solutions tothe challenges of providing palliative care in urban under-served settings include: (1) disseminating palliative careprinciples into the education of diverse health care profes-sionals, (2) introduction to palliative care earlier in the courseof illness, and (3) improving access to palliative care servicesin diverse settings of the safety-net system. Some projectswith a focus on improving awareness and access to palliativecare for the urban poor are currently underway. Futuredirections should include developing similar projects inother underserved settings and research involving cost-effectiveness and quality of care measures for such models ofcare. The patient in this case would likely have benefitedfrom early introduction to palliative care, including goals ofcare discussions, in the outpatient setting as well as on thefirst day of hospitalization.

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Author Disclosure Statement

No competing financial interests exist.

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Address correspondence to:Melissa A. Bender, MD

Palliative Care ServiceDepartment of Family Medicine

University of Washington School of Medicine1959 NE Pacific Street

Box 356390Seattle, WA 98195

E-mail: benderma@uw.edu

590 BENDER ET AL.