Engaging the Patient
This case comes from a state health department nurse who lived in the small town located on a large Great Plains Indian reservation where this case unfolded. It involved an extended family spanning 4 generations, all of whom lived in the same 3-bedroom house.
A Patient with a TB Past
The first family member to be diagnosed with pulmonary TB disease was its oldest, a 78-year old man who was known to everyone in the town as Roy. He had been ill for several months with a persistent cough, and was treated for respiratory infection over that period of time. Roy had a number of health issues: he was a diabetic; he had a diagnosis of end-stage COPD, leaving him dependent on an oxygen machine; and he was largely confined to a wheelchair. He was also a long-time cigarette smoker, and a heavy drinker. Perhaps all of Roy’s health issues made it difficult for the staff at his local clinic and Indian Health Service (IHS) health center to recognize the signs of TB even as they grew more pronounced over time. On the last of several visits to the health center’s emergency department, the staff collected a sputum sample from him before they sent him to a more comprehensive facility. Roy traveled to a big city hospital some 200 miles away, where he was admitted. The results from his sputum came back to the IHS center as culture positive for TB, and they notified the big city hospital, where the diagnosis was finally made. He was then started on a standard 4-drug regimen for TB disease. Roy had been infectious for about 10 months and had sought care on several occasions, so nearly 100 health care workers at 3 different organizations were identified as contacts and tested for TB infection. Luckily, none of them was found to be infected. Other than going for medical care he tended to spend most of his time at home, and that is where my contact investigation began. There were more than 20 people in the household, including 2 very young children. We also identified other family members who had visited Roy as possible contacts in the months before he was diagnosed. In total, we tested 38 family members and identified 2 additional cases of pulmonary TB disease – a 17- year old granddaughter of the patient and her 2-year old son. Based on the granddaughter’s sputum sample she was determined her to be non-infectious. In addition, since young children with TB disease are not considered infectious, there was no attempt to separate them from the rest of the family in the house. None of the other contacts that we tested were positive for TB infection, so no additional medical evaluation of contacts was necessary. Since Roy remained at the city hospital for a while, the 17-year old, Christine, and her toddler son Jason, were really my first patients. They both started directly observed therapy (DOT) with me and that was when I really got to know Christine, though we had seen each other around town since she was small. Christine was 7 months pregnant at the time and had been going to high school part-time in order to be able to care for Jason. She was anxious not to fall further behind in school because of illness, so she was motivated to take her TB medications. As is true with many children, it was difficult for her to coax Jason when he resisted efforts to give him his medication. We struggled to find ways to make it easier for him. Finally, we had success giving him the crushed pills in chocolate pudding to hide the taste, and when he got tired of the chocolate flavor we alternated with other flavors. By working together to give him his doses, Christine and I established a good relationship, and I often remained at the house after their DOT to review her homework with her. Staying a while also gave me a chance to talk with her about what information she had shared with others in the community about their diagnoses of TB.
Getting the Full Picture
Given the crowded conditions of the household, isolating Roy from the rest of his family was not possible, so he stayed in the hospital for about 2 months until he was no longer infectious. Well before he returned home, word was already circulating in our small town about his diagnosis of tuberculosis disease. I had heard about it from various sources even before I was assigned to conduct the contact investigation. As a result, several town residents called the health department asking for a TB test even though they had not been identified as contacts. In addition, employees from the high school approached me to ask whether Christine should be allowed to attend school, and the staff at the day care center that Jason attended expressed similar doubts. Therefore, I scheduled an educational session about TB transmission and its risk as well as infection control strategies for staff at both locations, but I got more than I bargained for when a few dozen parents showed up at my session with the day care workers! For a time it seemed like wherever I went I heard speculation about why TB had surfaced in this particular family. My first response was to tell people that I couldn’t confirm or deny any information about a medical case. However, I took the opportunity to explain and reinforce basic information about disease transmission, progression, and treatment. I reviewed how the health department determines infectiousness and the questions used to identify contacts of an infectious case. People appeared to leave the session with the understanding that if I had not yet approached them about possible exposure to a TB case, it was because it was determined that they were not at risk. It turned out to be an education for the entire community, since many members had never thought much about TB in this day and age – for many people it was something from their grandparents’ time that no one faced anymore. I also had the opportunity to educate my colleagues at the local hospital when it came time for Christine deliver her second child. At the time she was admitted to the hospital she told the staff that she was being treated for TB and asked them to contact me so that I could make a regular DOT visit. The hospital staff immediately put her in an isolation room even before they contacted me to confirm her diagnosis and treatment. When I did talk to the staff, I explained that there was no need for isolation since she was not infectious. I also explained the process of DOT. As with the rest of the townspeople, they had little experience with TB. Once Roy was discharged from the hospital he became part of my daily DOT visits. It was never any trouble to find him, since he was frail enough to be housebound, but I learned to get to the house early in the mornings with his medications. I needed to arrive there by 7:30 in the morning, because if I came later in the day, after he had already been drinking, it was more likely the medication would upset his stomach. He also did not appear to be regaining the weight he had lost before he was hospitalized, and the family reported that they couldn’t get him to eat much, so I brought him a liquid nutritional supplement along with the medications. The Roots of TB Disease The source of Roy’s disease was initially a mystery to me. He had been housebound for some time before feeling ill, and there were no documented cases of TB among the family’s many visitors. After much probing, it eventually emerged that TB in this household had roots in the past. I had spent quite a bit of time talking with Roy and his wife before they remembered that an elderly relative had been very sick with TB in the 1970’s, and had been treated by the Indian Health Service (IHS). I went to the regional IHS facility to look through the old disease registries to find the case. After going through several volumes of charts, I located the case that he told me about. I saw that Roy, his wife, and other family members had been identified as contacts and had been prescribed treatment for latent TB infection. I asked Roy if he remembered being prescribed any medication when their relative was sick. He didn’t remember it, but his wife did. She reminded him that she had completed treatment for LTBI, but that he hadn’t. They joked about him being something of a wanderer in those days. I gathered that they were referring to him being away from the house for periods of days and even weeks, sometimes working and sometimes out with his friends. My research into the case proved worthwhile, because many members of the family were anxious to discover the source of the disease that seemed to spring up among them without warning. Some blamed one member, others another. A brother visiting from California came under particular suspicion, since he had been staying at the house before Roy was hospitalized and the family clamed that brother had a chronic cough. Several family members were insistent that I test him. I shared with them that a TB infection can be latent for many years and can become active and progress to TB disease when a person is immunocompromised. I pointed out that aging, diabetes, a damaged respiratory system, and heavy drinking had left Roy vulnerable to the infection that the body had contained for many years. I assured them that we were working to identify and test all people at risk of infection. Lasting Rewards Dealing with 3 cases of TB in a single household was a challenge for the family, and sometimes for me, but treatment in all 3 cases was successfully completed. In addition, Christine and I developed a strong relationship that persisted even after she was cured. I was able to help her access housing services and give her a recommendation for part-time work, both of which helped her establish her own household with her young sons. Overall, I think the experience was a positive one for the community as well. Through the well-attended educational sessions I provided, community members were able to learn, seeing the examples of Christine, Jason, and Roy, that TB can be cured with appropriate treatment and a good bit of determination. LESSONS LEARNED: Focus on Individual Patient Needs Although a single house contained the three TB cases and several contacts described in this case, the people involved each had distinct needs and concerns that were met by the state nurse. • Christine benefited from the attention she receiveddue to her own DOT visitations, but particularly from the extra help she needed to meet the challenge of getting her toddler to take his TB medications. Additionally, she benefited from the nurse’s interest in helping with her schoolwork and support for her ambition to establish an independent home for herself and her sons. • For Roy, who was unable to reduce his alcohol use while on treatment, it was important to adjust his DOT to early morning before he started drinking and the additional nutritional supplement helped his recovery. • Family members were deeply concerned about how TB had come to affect their family. Their trust in the nurse overseeing their family cases was strengthened by her efforts to provide them with a full explanation of how Roy developed TB disease, especially since a senior member of the family corroborated the explanation. Safeguarding patient confidentiality in the course of contact investigations, education in congregate settings (like schools), and throughout the course of TB treatment is a challenging aspect of TB control. Patients and family members may be the first to disclose information about a diagnosis of TB to others within their social networks, as in the case presented in this issue. However, such disclosure does not release healthcare workers from the obligation not to discuss patient information without the consent of the patient. This case highlights strategies to maintain patient confidentiality when some information about the case is widely known. This can be accomplished by: • Asking the patient who she/he has told about the diagnosis and discuss how the healthcare provider plans to respond to any questions from people who ask about the case, • Exploring with the patient the possible ramifications of sharing health-related information with others at work, school, or other congregate settings. • Redirecting questions from the public about an individual patient to provide education about TB transmission and control, • Modeling respect for patient confidentiality when interacting with the public, even when the identity of a TB case is widely known. Toward Culturally Responsive Healthcare: The Indian Health Service The promise of healthcare played a role in the establishment of Native American communities within the larger U.S. society. In the 18th and 19th centuries, treaties between the U.S. government and native Tribes often included healthcare among the payments and services that the U.S. agreed to provide in exchange for enormous tracts of native-controlled land.1 However, there was no overarching legal foundation for health services in native communities until the 1920’s, and a corresponding institutional basis wasn’t established until 3 decades later. Founded in the 1950’s as part of the Bureau of Indian Affairs, the Indian Health Service (IHS) was the force behind the first modern public health efforts on U.S. reservations, including sanitation systems, childhood immunization, and reducing the burden of tuberculosis disease. Today the IHS is an agency of the Department of Health and Human Services and provides health care services to 57% of the approximately 3.3 million U.S. American Indians and Alaska Natives (AI/NA ) living on or near reservations and in urban areas. The mission of the IHS is to provide comprehensive, culturally acceptable personal and public health services to AI/NA. Its facilities extend throughout the continental U.S. and Alaska, from urban areas to rural and remote settings where its health centers and village clinics are the primary or sole local health care provider.2 While the IHS can point to many remarkable achievements, including sharp reductions in the incidence and mortality of TB among AI/NA in the late 20th century, it also faces daunting challenges. It serves populations that are often geographically isolated, with less education and more unemployment than the U.S. population overall, 25% of whom live below the poverty line.3 Life expectancy for AI/NA is 2.4 years less than Americans of all races, and the rate of infant mortality is 40% higher than that with white Americans. AI/AN populations experience disproportionate mortality due to TB, alcohol use, cervical cancer, diabetes, motor vehicle accidents, and other forms of accidental injury, as compared to the rest of the U.S. population.4 After decades of improvements, health disparities between AI/NA and the U.S. population overall have begun to increase.5 The IHS acknowledges that many of its facilities do not have the capacity to meet the needs of its patient population. It is widely acknowledged that the agency is inadequately funded to provide comprehensive quality care to all AI/NA populations that rely on its services.6 In addition to direct service provision, the IHS works in collaboration with Tribes and Tribal health boards and is a vital partner in sanitation and environmental health projects in AI/NA communities. As illustrated in the case featured in this issue, the IHS also collaborates with state, county, and municipal departments of health.7 Partnerships with local providers and participation in projects to improve sanitation and living conditions may strengthen the IHS’s capacity to respond to the social and cultural needs of the communities it serves. The IHS has supported innovative healthcare programs, such the integration of Navajo medicine men into hospital-based care teams8 and the use of midwifebased protocols to increase the number of women successfully delivering vaginal births after having delivered by caesarean section.9 The IHS has been a major source for training and education for AI/NA healthcare professionals and support staff. These human-resource capacity-building Photo Courtesy of the Indian Health Service/U.S. Department of Health and Human Services. efforts have fed back into the IHS workforce: currently 50% of full-time IHS providers are of AI/NA ethnicity, as are the overwhelming majority of full-time administrative and technical staff. The incorporation of increasing numbers of AI/NA healthcare providers is an important step towards culturally competent care in IHS facilities, as is the increasing devolution of administrative responsibilities from IHS officials to local health boards and Tribal governments.10 References 1. Indian Health Service. The First 50 Years of the Indian Health Service: Caring and Curing. Executive Summary, Part 1 2005. 2. Indian Health Service. The Indian Health Service: A Quick Look 2010. 3. Ogunwole S. We the People: American Indians and Alaska Natives in the United States. Census 2000 Specal Reports February 2006 2006. 4. Indian Health Service. Indian Health Disparities 2010. 5. Office of Minority Health. American Indian/Alaska Native Profile 2009. 6. Belluck P. New Hopes on Health Care for American Indians. New York Times. December 2, 2009, 2009; A: 1. 7. Schneider E. Tuberculosis among American Indians and Alaska Natives in the United States, 1993-2002. Am J Public Health. May 2005;95(5):873-880. 8. Fonseca F, Clark, H. Native-American Doctors Blend Modern Care, Medicine Men. USA Today. April 22, 2010, 2010. 9. Grady D. Lessons at Indian Hospital about Births. New York Times. March 6, 2010, 2010;A: 20. 10. Indian Health Service. The First 50 Years of the Indian Health Service: Caring and Curing. Executive Summary, Part 42005.
A Long-term Relationship
Ritchie was no longer infectious after a month of treatment, but we considered him a high-risk case because of his history of poor adherence and a presumed diagnosis of MDR-TB. In addition, he was currently homeless and an alcoholic, two situations which may present challenges with adherence to treatment. Therefore, the TB program requested that he not be discharged from the hospital.
We also explored other options to see Ritchie through several more months of treatment for MDR-TB. Our state program had limited resources to retain high-risk patients, but we had worked together with the Indian Health Service (IHS) in the past. The IHS provides treatment for residents of reservations, and it could collaborate in providing TB treatment to an in-patient. I was taking steps to determine whether Ritchie’s previous stay on the reservation would constitute residency.
We were surprised when the results of his conventional drug susceptibility test finally came in. While rapid susceptibility testing had indicated MDRTB, the conventional test showed pan-sensitive TB. Further testing on the initial culture verified the conventional test result. Ritchie had TB but not MDRTB, meaning he no longer needed to be confined to the hospital. It turned out to be a rare case of faulty internal controls of the initial rapid test.
We now had to shift our focus to preparing Ritchie for the remaining months of DOT as an outpatient. The TB program arranged to pay an area motel for a room for Ritchie where I could provide DOT, and he was discharged from the hospital. Meanwhile, I took steps to help him secure SSI benefits.
Building a New Life
As I made DOT visits to Ritchie in the motel room, I suggested different activities to occupy his time and establish new social relationships. He rejected initial offers to go to an alcohol treatment program. Eventually he attended one Alcoholics Anonymous meeting, but could not relate to the process and refused to speak when it was his turn. He told me he would not return because he no longer had any desire to drink.
Ritchie has maintained communication with his family since his discharge, and even took a brief trip to visit them on the reservation.
I still see Richie regularly. He is doing well. He has a prepaid cell phone, uses the local bus system, and frequents the library to check out books, talking books and music CD’s. It is gratifying to know that I may have played a small role in helping him forge a new life for himself.
Invest in Listening
Communicating with Ritchie was difficult when I first met him. Although I initially felt as if he was not fully absorbing many of the things that I said to him, he began to ask more questions once he had more trust in me. I always tried to explain things to him in a way I felt he could understand. To this day he will ask me questions and if he comes to the office, he’ll ask our staff as well.
The Value of Family Ties
Although his family ties were irregular over the decades that Ritchie was moving from state to state, those connections provided an important link when he was in the hospital as well as now that he is stable.
Build Links to Cultural Resources
When I first met Ritchie, the city TB program did not include Navajo health care providers, nor did we have well-established relationships with Navajospecific organizations. The nearest Navajo interpreter was 100 miles away. In retrospect, not being able to draw immediately on culturally appropriate services may have impeded our ability to provide optimal care. It took time for us to locate key resources, which may have been more effective had we been able to incorporate them earlier. Notably, we drew an interpreter into Ritchie’s case relatively late. Our general understanding of how he experienced his illness and diagnoses may have been enhanced if he had the opportunity to communicate at least partially in Navajo.
Communication skills, including ‘active listening’ are essential elements of quality healthcare.1 In active listening, the clinician demonstrates engagement and emotional presence by giving close attention to not only the content of the speaker’s message but also the emotions and feelings underlying the message. Focused attention on clues to unexpressed beliefs and concerns as well as their direct messages can help patients overcome reluctance to articulate their perspective on symptoms or diagnoses, out of embarrassment or fear.2 Active listening involves verbal and non-verbal signs that the clinician fully understands and accepts what is conveyed.3
The open, exploratory nature of active listening is distinct from the deductive aims that guide diagnostic listening.4 As one practitioner and teacher of active listening observed, “physicians’ intense clinical gaze directed at symptom description, time line, modifying factors, and associated symptoms so focuses clinical attention as to make it difficult to recognize clues”5 to patients’ experience of disease. Active listening facilitates the suspension of diagnostic listening in order to open the door to the patient perspective.
“I think we have to find ways of presenting information that is not upsetting to the patients. Like prefacing our statements with ‘The information I want to give you is a very difficult subject. It’s difficult for me to give you the information, and it may be difficult for you to hear it. But both of us agree that we need to discuss th.2is. And I don’t wish you misfortune or want anything bad to happen to you, but here’s the situation . . .’ And then go into your subject matter that has to do with giving information about a disease that’s incurable, or working with a dying patient, or discussing advance directives, or anything. You just have to get them prepared.” 1
1 Carrese J, Rhodes L. Western bioethics on the Navajo Reservation. Benefit or harm? JAMA 1996;274(10):826-829.
Engaging in active listening before allowing diagnostic listening to direct the dialogue between provider and patient may be especially useful in crosscultural healthcare encounters, since active listening can also yield important insight into how patients prefer to receive diagnoses, guidance, and suggestions for their care. Communication style preferences vary among cultures and how information and suggestions are presented can dramatically impact on patient satisfaction and health outcomes.6
“When I speak with Navajo people about conditions, illnesses, outcomes, I don’t speak to them directly; I do it in the third person. For example, ‘You know some people have this condition, and this may happen to them. If we do this test to check for meningitis, there’s always the possibility of bleeding or infection. Some people may have had those things happen to them.’ That’s how I teach and talk to people: ‘Some people have these troubles.’ It’s more acceptable; you’re not seen as wishing things on them.” 2
2 Carrese J, Rhodes L. Bridging cultural differences in medical practice: the case of discussing negative information with Navajo patients. J Gen Int Med 2000;15:96.
Navajo Medical Providers on Communication Style
In the traditional Navajo worldview, ways of thinking and talking about events are understood to influence the course of events. To speak about bad things, such as disease or suffering, is seen as bring them about.7 Even people somewhat distanced from traditional ways may feel anxiety about explicit discussion of negative information, as did Ritchie when he chided his case manager for speaking directly about his illness and possible negative consequences in the case presented here. Speaking in interviews, Navajo providers discussed how they avoid directly naming illness and poor outcomes when talking to their patients.8
Key Elements of Active Listening
|Space for communication
||Dedicate time to listening and create a space in which communication is as private and uninterrupted as possible
|Attentive body language
Your body can communicate engagement and interest, or the opposite. Be aware of your:
- Eye contact,
|Suspension of judgment
Consciously withhold diagnosis or analysis of the speaker’s condition to create space for full self-expression.
Making a positive or negative evaluation of the speaker inhibits the listener from absorbing further input from the speaker.
|Strategic verbal cues
||Give enough verbal feedback to encourage the speaker’s expression, but not in such a way that the listener guides the dialogue.
- Periodically paraphrase what has been said.
- Ask if your understanding is accurate.
- Include underlying emotions as well as content in the summary.
|Active listening is not:
…asking follow-up questions that respond to the listener’s need for information thereby diverting the speaker.
…quickly agreeing or offering reassurance before the speaker has finished talking.
…diagnosing or offering solutions.
1 Nancy Edward, Wendy Peterson, and Barbara L. Davies, “Evaluation of a multiple component intervention to support the implementation of a ‘Therapeutic Relationships’ best practice guideline on nurse’s communication skills,” Patient Education and Counseling 2006 63:3-11; Aaron W. Calhoun and Elizabeth A. Rider, “Engagement and listening skills: identifying learning needs,” Medical Education 2008 42: 1111-1146; http://www.acgme.org/ outcome/comp/GeneralCompetenciesStandards21307.pdf.
2 Forrest Lang, Michael R. Floyd, Kathleen L. Beine, “Clues to Patients’ Explanations and Concerns About Their Illnesses. A Call for Active Listening,” Archives of Family Medicine 2000;9:222-227.
3 Kathryn Robertson, “Active listening. More than just paying Attention,” Australian Family Physician 2005; 34:12, 1053-1055.
4 Baron, RJ “An introduction to medical phenomenology: I can’t hear you when I’m listening,” Annals of Internal Medicine, 1985.
5 Lang, 223.
6 Carrese J, Rhodes L. Bridging cultural differences in medical practice: the case of discussing negative information with Navajo patients. J Gen Int Med 2000;15:96.
7 Carrese J, Rhodes L. Western bioethics on the Navajo Reservation. Benefit or harm? JAMA 1996;274(10):826-829.
8 Carrese J, Rhodes L. Bridging cultural differences in medical practice: the case of discussing negative information with Navajo patients. J Gen Int Med 2000;15:96.
Alcohol and Native American Communities
In the case presented in this issue, Ritchie achieved sobriety during his prolonged hospitalization, leaving behind years of steady alcohol use. The TB program staff offered to refer him to supportive services to strengthen his recovery and Ritchie attended one meeting of Alcoholics Anonymous. He found the meeting unhelpful and refused to return. Afterwards, he maintained his sobriety independently.
Ritchie’s reaction to AA was not unusual among Native Americans. Many fundamental elements of AA are foreign to native healing traditions, including the separation of the ailing (in this case alcoholics) from the rest of the community and the public ‘confession’ of personal shortcomings or transgressions.While some tribes have developed culturally-specific adaptations of AA, there is still a need for culturallyrelevant approaches to recovery from alcohol dependence in Native American communities.i
i Abbott P J. Traditional and Western Healing Practices for Alcoholism in American Indians and Alaska Natives’, Subs Use Misuse. 1998;33(13):2605-2646.