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Abstract

Background:

People who inject drugs (PWID) are at risk for severe bacterial and fungal infections including skin and soft tissue infections, endocarditis, and osteomyelitis. PWID have high rates of self-directed discharge and are often not offered outpatient antimicrobial therapies, despite studies showing their efficacy and safety in PWID. This study fills a gap in knowledge of patient and community partner perspectives on treatment and discharge decision making for injection drug use (IDU)-associated infections.

Methods:

We conducted semi-structured interviews with patients (n = 10) hospitalized with IDU-associated infections and community partners (n = 6) in the Portland, Maine region. Community partners include peer support workers at syringe services programs (SSPs) and outreach specialists working with PWID. We transcribed and thematically analyzed interviews to explore perspectives on three domains: perspectives on long-term hospitalization, outpatient treatment options, and patient involvement in decision making.

Results:

Participants noted that stigma and inadequate pain management created poor hospitalization experiences that contributed to self-directed discharge. On the other hand, patients reported hospitalization provided opportunities to connect to substance use disorder (SUD) treatment and protect them from outside substance use triggers. Many patients expressed interest in outpatient antimicrobial treatment options conditional upon perceived efficacy of the treatment, perceived ability to complete treatment, and available resources and social support. Finally, both patients and community partners emphasized the importance of autonomy and inclusion in medical decision making. Although some participants acknowledged their SUD, withdrawal symptoms, or undertreated pain might interfere with decision making, they felt these medical conditions were not justification for health care professionals withholding treatment options. They recommended open communication to build trust and reduce harms.

Conclusion:

Patients with IDU-associated infections desire autonomy, respect, and patient-centered care from healthcare workers, and may self-discharge when needs or preferences are not met. Involving patients in treatment decisions and offering outpatient antimicrobial options may result in better outcomes. However, patient involvement in decision making may be complicated by many contextual factors unique to each patient, suggesting a need for shared decision making to meet the needs of hospitalized patients with IDU-associated infections.

Keywords

injection drug use infective endocarditis shared decision making substance-related disorders

Introduction

People who inject drugs (PWID) are at risk for severe bacterial and fungal infections, including skin and soft tissue infections, endocarditis, and osteomyelitis.¹ Incidence of these infections has been rising in recent decades leading to significant morbidity and mortality.^1,2 Long-term outcomes—including readmissions for serious infections, longer hospital stays, and death—for patients with injection drug use (IDU)-associated infective endocarditis are poor compared to patients with endovascular infections not related to IDU,^2,3 McNeil et al.⁴ reported how the hospital setting constitutes a “risk environment” for PWID that increases the potential for self-directed discharge and drug-related harm. Similarly, prior work has identified undertreated withdrawal and pain, stigma and discrimination, and hospital restrictions as primary drivers of self-directed discharge.⁵

Harm reduction refers to practical strategies to help PWID engage in safer practices, recognizing that drug use occurs and that providing services without judgement or coercion can reduce harm.⁶ This may include a variety of approaches, including community health interventions such as establishing syringe services programs (SSPs) as well as more individual approaches to patient care.⁷ Implementing harm reduction efforts and tailoring treatment options to individual patients have both been proposed as possible approaches to increase treatment completion and prevent future infectious complications among PWID.¹ One study found that using a risk assessment to identify patients at low risk for ongoing IDU as candidates for outpatient parenteral antibiotics reduced costs and lengths of stay without increasing readmissions.⁸

Other studies have focused on outpatient treatments to minimize prolonged hospitalizations, though some of these treatments are considered “non-traditional” at the time of writing. One recent study has shown that offering oral antimicrobials after 10 days of intravenous antimicrobial treatment is more successful for treating serious IDU-associated infections and preventing death when compared to self-directed discharges without additional antimicrobial treatment.⁹ Lewis et al.¹⁰ found no significant difference in 90-day all-cause readmission rates, mortality, or emergency department usage between PWID who had a self-directed discharge on oral antibiotics and those who completed treatment as an inpatient.¹⁰ In some areas, infusion centers are available for patients to receive intravenous antibiotics and substance use treatment in an outpatient medical facility.¹¹ Outpatient parenteral antimicrobial therapy (OPAT) is another option that can increase cost-effectiveness and patient satisfaction.¹² It involves placement of a central venous catheter so that patients can administer intravenous antibiotics at home (or in a shelter). OPAT has been demonstrated to be safe and feasible among some PWID and may be as effective in this population as it is for patients without a history of IDU.¹³ However, PWID are often not offered this treatment option due to concerns regarding the use of a central venous catheter to inject drugs.^12,14

By offering medications for the index infection and opioid use disorder, care management, and counseling follow-up, patients who leave with “non-traditional” outpatient treatment can achieve favorable health outcomes.¹⁰ Though many healthcare professionals (HCPs) are open to discussing these options with patients, there are some who are concerned that patients will not complete antibiotic courses after discharge, increasing the risk for antimicrobial resistance, infectious complications, and hospital readmission.¹⁵

Shared decision making has been used with some success with PWID and may be useful in the context of treatment for IDU-associated infections, but studies on this topic specifically are limited.¹⁶ Sikka et al.¹⁷ described an interprofessional provider conference to increase discharge options for patients with IDU-associated infections.¹⁷ Their study included shared decision making as a means to integrate harm reduction principles and patient preferences into discharge planning for patients with substance use disorders (SUDs).¹⁷ Our own work has explored perspectives on shared decision making between PWID and HCPs. We previously reported that HCPs may believe the hospital is protective and that outpatient therapy is too difficult or risky, but are nevertheless open to having a conversation with patients about options.¹⁵ Few studies have examined the perspectives of patients with lived experience regarding outpatient options. Morales et al.¹⁴ reported that patients have divergent views on risks associated with a peripherally inserted central catheter (PICC), and some patients do not prefer OPAT to hospitalization. Furthermore, many patients believe that they were not offered outpatient options due to stigma from their care team.¹⁴

We sought to better understand the perspectives of people with lived experience of IDU on engaging patients with IDU-associated infections on decisions about antimicrobial treatment options, including outpatient options. We interviewed hospitalized PWID and community partners – who work directly with PWID – to identify what they believe is relevant for considering long-term hospitalization, outpatient treatments, and including PWID in treatment decisions.

Methods

Study design: This study is a part of a larger project in which we conducted in-depth qualitative interviews with HCPs, community partners, and patients to gather perspectives on treatment decision making for IDU-associated infections in order to inform the development of a conversation guide to facilitate discussions between HCPs and patients. We previously reported HCP perspectives.¹⁵ Here, we report on in-depth qualitative interviews with community partners and PWID regarding hospitalization and outpatient infection treatment options for infectious complications of drug use.¹⁵ We recruited participants with lived experience: patients interacting with the hospital environment during treatment for IDU-associated infections and community partners who work with PWID in the area. This study was approved by the Maine Health Institutional Review Board.

Study population and recruitment: At a 700-bed, academic, tertiary care medical center located in Portland, Maine, a team member invited 23 eligible patients over 18 years of age who were hospitalized for an IDU-associated infection between 21 July 2021 and 2 March 2022 to participate in an interview to share their perspectives on antibiotic treatment, including outpatient options. Patients were excluded if they had active psychosis or were medically unstable. All patients at this institution, including participants, have access to an inpatient multidisciplinary addiction psychiatry team. Participants were informed that their responses would not be shared with their care team and participation would not affect their treatment, and verbal consent was given prior to data collection.

One coauthor invited community partners – peer support workers and outreach specialists with lived experience who work with PWID outside of the hospital – based on relationships she established working with them previously. These community partners represent three of the four SSPs operating within the hospital catchment area. SSPs offer a broad range of services including peer support workers, recovery centers, and harm reduction programming.^18,19 Another coauthor (MK) had interviewed two of these community partners previously, but otherwise had no prior relationships. Recruitment continued until thematic saturation was reached.

Interviews: A trained and experienced interviewer conducted all interviews using piloted semi-structured interview guides (Supplemental Appendix). Interviews were approximately 21–48 min in duration (mean 36 min) and were audio-recorded. One coauthor (MK) conducted two patient interviews by phone, and the remainder were conducted in-person. Patient interviews probed history with substance use, experiences with IDU-associated infections and hospitalization, and perspectives on discussing outpatient alternatives with a physician. Outpatient treatment options discussed included oral antimicrobials, infusion centers, and OPAT. Six community partners participated through video conferences or phone calls. Community partner interviews probed factors relevant to experiences of PWID with medical systems, causes of self-directed discharges, and perspectives on offering outpatient antibiotic options to PWID.

Analysis

Following professional transcription, the first three authors analyzed interview transcripts using MAXQDA software to assist with indexing.²⁰ They used inductive thematic analysis, rather than a theoretical construct, to allow the lived experiences of participants to guide analysis. Analysts had different disciplinary backgrounds (e.g., anthropology, medicine, and epidemiology) and levels of exposure to patients with SUD. The goal of the study was to inform a conversation guide that would give patients greater voice in their treatment, and accordingly analysts attended to ideas that emphasized that patient voices are important. Analysts were familiar with harm reduction principles and were not opposed to these approaches. We emphasized inductive principles during analysis to center the voices of our participants and avoided imposing a theoretical framework.

Analysts followed the six steps of thematic analysis outlined by Braun and Clarke,²¹ which is an iterative process. Analysts began by familiarizing themselves with the transcripts and then coded the transcripts using iterative categorization, which begins with structural codes based on the interview, then introduces inductive sub-codes to capture information from responses.²² Next, analysts independently identified themes, meeting, throughout the process to review and compare themes, and broaden analytical perspectives. In each iteration, analysts revisited the transcripts, evaluating and revising themes based on textual support, challenging one another with alternative interpretations and negative cases (instances that contradicted proposed themes).²³ Finally, the first two authors met to define, elaborate, and relate themes in terms of the research question. In our results, themes and subthemes are organized into three domains based on components of the research question: (1) Long-term hospitalization (the default treatment), (2) Outpatient treatment options, and (3) Patient involvement in decision making.

Results

Patient demographics are described in Table 1. At the time of interview, nine of the patient participants were hospitalized, while one was interviewed after discharge. Patients have been assigned pseudonyms for privacy; for patient participant quotes, the source’s pseudonym and age are presented parenthetically. Community partners had a mean of 5 years working with PWID, and all had lived experience with IDU, either personally or through a close contact (Table 1). One community partner reported having been previously hospitalized for an IDU-associated infection. No additional themes emerged after seven patient interviews, suggesting thematic saturation.

Table 1.

Patient and community partner participant demographics and characteristics, Maine, 2022.

Demographics and characteristics	N = 16	%
Patient participants	N = 10
Mean age in years (SD)*	39.3 (10.3)
Gender identity
Female	4	40
Male	6	60
Nonbinary	0	0
Self-reported primary substance used^$
Opioids	8	80
Methamphetamines	4	40
Unhoused	7	70
Community partner participants	N = 6
Mean age in years (SD)	32.8 (3.2)
Mean number of years working at SSPs in the community (SD)	4.8 (2.5)
Gender identity
Female	4	67
Male	1	17
Nonbinary	1	17

Standard deviation.

Some patients reported using more than one drug type.

Themes and subthemes are organized within three domains: long-term hospitalization, outpatient treatment options, and perspectives on including PWID in decision making. Table 2 demonstrates the organization of these domains, themes, and subthemes.

Table 2.

Summary of results organized into categories, themes, and subthemes.

Domains	Themes	Subthemes
Long-term hospitalization	Aspects of hospitalization encourage self-discharge	Experiences of stigma
		Feeling restricted/trapped
		Inadequate pain or withdrawal symptom management
	Reasons to stay in hospital	Hospital as a bridge to SUD treatment
		Refuge or protection from substance use triggers
		Caring staff
	Decisions to leave or remain in hospital are situational
Outpatient treatment options*	Effectiveness of outpatient treatment options
	Perceived ability to complete treatment	Resources essential for outpatient treatment
		Individual self-efficacy
		Available social support
Patient involvement in decision making	Value of patient autonomy	Excluding patients from decision making is stigmatizing
	SUD may affect decision making
	Importance of harm reduction	Building trust
		Avoiding bias against substance use in treatment decisions

Outpatient treatment options include: partial oral antimicrobials, infusion center, outpatient parenteral antimicrobial therapy.

SUD, substance use disorder.

Domain 1: Long-term hospitalization

Participants shared factors they consider when deciding whether to stay in the hospital to receive long-term antibiotics, referring to aspects of hospitalization that encourage self-discharge in contrast with those that encourage them to stay. Most participants had mixed perceptions of hospitalization, and decisions about treatment are situational.

Theme: Aspects of hospitalization encourage self-discharge

Reflecting on reasons why they wanted to leave the hospital or had self-discharged before, participants focused on feeling stigmatized, feeling restricted or trapped, and experiencing inadequate pain or withdrawal symptom management.

Subtheme: Experiences of stigma

Many patients reported stigmatizing interactions with hospital staff, especially during admission:

At first, they did think I was lying, and I sat in a chair in the waiting room for 12 h before they actually did anything, before they actually even took blood, and they gave me an attitude in the waiting room. The people that worked downstairs, they were mean. They were real mean. (Samantha, 30)

These past experiences of stigma led some patients to avoid hospitalization in the future:

I actually started cutting open my own abscesses and cleaning them and whatnot myself instead of having to deal with being judged and treated like that at the hospital. (Jennifer, 42)

Subtheme: Feeling restricted

For many patients, the hospital environment alone was enough to create negative perceptions. Notably, many patients were under isolation precautions due to colonization or infection with resistant organisms. Many patients reported being unable to leave their rooms or the immediate hallway, and restrictions on visitors, movements, and behaviors left patients feeling trapped, anxious, or bored:

I can think of a thousand reasons [to want to leave]. I don’t want to spend 20 [more days] in “jail.” [. . .] Can’t smoke. I can’t do anything. (Joshua, 35)

I just don’t like being here. I hate being in a place where I know that I have to be. Where I have to stay and can’t leave. (Jason, 48)

Subtheme: Inadequate pain or withdrawal symptom management

Inadequate pain or withdrawal symptom management was consistently reported by patients. One patient suggested better management of these symptoms as something hospital staff can do to prevent patients from discharging early:

. . .if they put someone on a low dose pain medication until they can get started on Methadone, just to keep them from being sick. [. . .] That’s really the only thing, in my head, that I can think of that would actually get an addict, a heroin addict especially, who’s going to be detoxing, physically, extremely horribly, to stay as if they can feel comfortable. (Emily, 20)

In particular, participants noted uncomfortable experiences around being weaned off pain medications toward the end of a hospital stay. For one patient, the discomfort was severe enough to consider leaving the hospital:

But now, now is the worst part for me because they’re bringing meds down because I’m getting ready to leave. So, it’s right now that I’m struggling with not leaving because I’m in agony and it’s because they’ve had a bunch of different antibiotics going through me. (Samantha)

Theme: Reasons to stay in hospital

Participants also described benefits to remaining in the hospital as an inpatient. While many believed hospitalization was their only option for treating their infections, they also described the hospital as a bridge to SUD treatment, refuge or protection from substance use triggers, and a place with caring staff.

Subtheme: The hospital as a bridge to SUD treatment

Multiple patients referenced being enrolled at SUD treatment clinics during their hospital stay. A community partner described how the combination of these factors can successfully introduce patients to SUD treatment:

I do think it’s a successful model [. . .] because I think that if you have an adult who’s in the hospital, they’re choosing to be there. They’re choosing to receive IV treatment. They’re engaging with the providers about recovery resources. They’re stabilizing on a medication, and they’re leaving connected to resources. (CP 4)

Subtheme: Protection from substance use triggers

Regardless of whether patients intended to use their hospitalization as a bridge to SUD treatment, many patients whose priority was treating their current infection saw the hospital as a safe place in which they were protected from substance use triggers while healing:

There’s no way that I could be home right now and not trying to get heroin or some sort of pain med on the street, which is never what it’s said to be anymore. So, it’s better that I’m in here. [. . .] But being in here at least I know what’s being put in my body and they’re able to monitor me. So, it’s safe. (Chris, 36)

The perception of the hospital as a safe place often coincided with fear of other potential outcomes of their illness. One patient, acknowledging the severity of her infection, saw the hospital as the only option for successful treatment and expressed fear of continued drug use:

If I were to leave this hospital right now, I don’t think I would make it. I don’t think this infection would go away, and I’d probably. . . It was that bad. If I use one more time, I feel like. . . So I’m scared to even think about it. (Ashley, 34)

Subtheme: Caring staff

Finally, some participants noted caring interactions with hospital staff as contributing to the theme of positive hospitalization experiences. These included receiving care that met their needs, encouragement and emotional support, and feeling that HCPs listened to them to understand their situation.

You have no idea how grateful I am. This hospital has been amazing to me. They really have. The nurses don’t look at me like I’m just another drug addict on the streets. They don’t pick and choose what they want to do for me. (Samantha)

Theme: Decisions to leave or remain in hospital are situational

Often informed by prior encounters, patients weigh the perceived benefits and harms of hospitalization when deciding whether to stay in the hospital. One patient’s current and prior hospitalization experiences demonstrate how this balance can influence decisions depending on the patient’s condition and their analysis of the risks and benefits. In explaining why, he chose to leave the hospital by self-directed discharge in the past, he cited poor interactions with the care team and inadequate pain management:

. . .I just got lied to and I don’t like it when they lie to me. And a few other times I just was in a lot of pain and I didn’t, wasn’t getting treated the way I should. And, I just know that I hit the street and you do better. So, I leave and go get high and feel better. (Jason)

In contrast, during his current hospitalization, the patient felt that his condition was severe enough that hospitalization was necessary. Referencing concern for his health, he changed the weight of treatment in his decision-making process:

I mean, I can leave whenever I want to. But at the same time, I know that I need the medical attention that I’m receiving. Now I know it’s needed. I mean, they’re not just going to bring you to the hospital and let you stay here for no reason. (Jason)

Domain 2: Outpatient treatment options

Patients discussed outpatient treatment options in relation to their preference for hospitalization, as described above. Patients and community partners also described circumstances in patients’ lives that make outpatient treatment more appealing:

. . .people are in chaotic spaces in their lives. [. . .]. Whether that’s something around your housing, something around the dental appointment that you’ve been waiting for, for 4 months to get dentures. And if you miss it, they’re never going to do it again for you. . . (CP 6)

Accordingly, the desirability and perceived appropriateness of outpatient options differed across patients. In cases where patients were considering outpatient alternatives to hospitalization, they discussed several factors important to their decision. Relevant themes are included under considerations about the effectiveness of outpatient alternatives and perceived ability to complete treatment, including subthemes of: essential resources such as housing and transportation, level of self-efficacy, and available social support.

Theme: Effectiveness of outpatient treatment options

Recognizing the seriousness of their infection, the most important consideration for most patients regarding treatment options was antimicrobial efficacy. Half the patients spontaneously mentioned the efficacy of the treatment when discussing their preferences:

Interviewer:

If you were trying to decide on an option, what would you want to know about it?

Patient 1:

How effective it was. (Chris)

Several patients told us that they would not consider outpatient options in cases where they had been told they were less effective.

Theme: Perceived ability to complete outpatient treatment

Subtheme: Resources essential for outpatient treatment

In addition, participants reported that lack of access to transportation or stable housing would make outpatient treatment options unfeasible for them. Some unhoused patients worried that they would not have a safe place to stay where they would be protected from further infection. One patient said he would be more confident in keeping a PICC line clean if he had a place to stay:

But yeah, the hotel would make it a lot easier. [. . .] And I could do that PICC line or the antibiotics. I also think that I’d be able to keep my PICC line clean, I think a lot of that would definitely be maintainable or attainable. . . (Jason)

Several patients expressed concerns about receiving antibiotics at an infusion center, which was located outside of Portland, based on lack of access to reliable transportation:

Interviewer:

Can you think of any reason that would make it difficult to do [an infusion center]?

Joshua:

Transportation. [. . .] how am I supposed to get there with no vehicle?

Subtheme: Individual self-efficacy

Patients expressed mixed self-efficacy surrounding their ability to successfully complete treatment in the outpatient setting. The topic of self-efficacy emerged in several ways, including the ability to maintain a PICC line appropriately, finish a course of antibiotics, or attend all infusion center appointments. For example, patients differed regarding their perceived ability to keep their PICC sanitary. One patient acknowledged that he was unlikely to prioritize treatment in the outpatient setting under certain circumstances:

I’d like to say yes, but probably not. [. . .] Depends, I mean some days it’d probably be nice and then there’s other days that it probably wouldn’t be so clean. That’s just the hustle and bustle and the way life is. (Jason)

Other patients were more confident:

Emily:

You just have to have common sense really. [. . .]. Clean yourself, wash yourself, and keep that thing sanitized.

Interviewer:

Do you feel like you would’ve been able to keep it clean?

Emily:

Absolutely.

These mixed responses regarding PICC line care demonstrate how a variety of personal and circumstantial factors contribute to patients’ perceived ability to manage an outpatient line.

Some patients expressed concern that they would not have completed their antibiotic course if they were discharged. However, other patients were confident in their ability to complete their antibiotics course. When asked if he would remember to take the pills every day until they were finished, one patient replied:

Oh, absolutely. [. . .]. I just went through a 3 months liver treatment where I had to take pill every day. [. . .]. I never once forgot to take my medicine. (Chris)

Some patients expressed confidence in their ability to attend infusion appointments, often by utilizing additional resources available to them. One patient who had recently completed a course of outpatient intravenous antibiotics described such a strategy:

I have [. . .] cab rides to everywhere I need to get, so that’s really good too. The hospital helped me with that. (Emily)

Thus, while accessibility of resources and social support were important, some patients displayed greater confidence in their ability to utilize relevant resources than others.

Subtheme: Available social support

Social support emerged alongside self-efficacy as a factor promoting successful completion of outpatient treatment. When expressing frustration that she had not been offered the option of an outpatient PICC line due to what she assumed was her care team’s concern she would use it to inject drugs, one patient stated:

. . .I’m going to have someone with me 24/7 anyway, who doesn’t use, who’s taking care of me. He would never, no, that would never. . . I would never let that happen. That would never happen. That’s what bothered me a lot. (Emily)

When discussing outpatient PICCs, some patients said they might use the line to inject unprescribed substances, while others were confident they would not. For example, asked whether he would inject in the line, one patient responded emphatically:

No, absolutely not. I think I’m old enough, well I’m at a point and old enough to understand my life [. . .]. I’d rather be in pain than live the life that is entailed in doing heroin, and trying to get by that way. (Michael, 54)

While concerns about outpatient treatment options varied by individual, lack of resources and low self-efficacy were common themes. Many patients, however, expressed high self-efficacy regarding their ability to complete outpatient treatment, particularly once they considered social support available to them.

Domain 3: Patient involvement in decision making

Themes that emerged regarding the role of patients in treatment decision making included: (1) patient autonomy, (2) SUD affecting patient decision making, and (3) harm reduction.

Theme: Value of patient autonomy

Both patient and community partner participants emphasized the theme of autonomy. Most patients wanted to have more autonomy over their care and to be included in conversations during the decision-making process:

I know my body better than anybody else. I’m the one who’s lived in it for 42 years. But once I got to talk to [the doctor] and stuff, I started feeling a lot better. He made me feel like he really listened, like he really cared, it gave me some reassurance. (Jennifer)

CPs echoed the importance of patient autonomy in discharge decision making:

. . .I would say every step of the way, I think that the patient should be involved in their care and their decision making about their care [. . .] the same way you would with any other patient, just trying to let that patient take the lead in determining their care. (CP 3)

Subtheme: Excluding patients from decision making is stigmatizing

The feeling that not being included in treatment decision making is stigmatizing for PWID emerged as a subtheme of patient autonomy. Related to concerns about decision making ability, some HCPs may wait until patients have medically stabilized before having conversations about treatment options. One community partner advocated having these conversations as early as possible:

I think it, for me, [the conversation] would be as soon as you can, not once you’re admitted or not. I think a lot of times people end up feeling trapped in not knowing. [. . .] People who use drugs are treated as non-persons or children in a lot of ways. [. . .] the biggest thing I think we can offer anyone is choice. Even if a person chooses not to go in there, there’s a dignity in offering all the information and having people choose that. (CP 5)

Both patients and community partners noted that omitting outpatient options for a patient with an IDU-associated infection can be perceived as stigmatizing:

. . .it just feels like judgment just because you’re a drug user, we can’t do this. If it was a grandma [and] it’s hard for her to leave home, are you going to say the same thing? (CP 2).

Yeah, I think basically it’s that they’re afraid that I would use that for IV drugs, which I know I can give my word that I wouldn’t, but [. . .] you don’t know if I’m honest or a liar or not, so I understand that, but it does suck that I feel that that’s what the reason is. (Jennifer)

Patients felt their exclusion from these options represented mistrust between themselves and their care team. Such negative perceptions could adversely affect the patient–HCP relationship, interactions with other staff, and the hospitalization experience overall.

Theme: SUD may affect patient decision making

However, some patients and community partners did suggest that SUD might hinder their ability to participate in a conversation about treatment options productively. One patient admitted that she might have agreed to an outpatient option if offered despite not having transportation to attend appointments:

I would’ve probably said yes [to going to an infusion center], but then I would’ve gotten outside. I would’ve gotten high and then have thought, shit, what am I going to do? I don’t even have a way to get there. I don’t have $2 every day to take the bus. $4 to take the bus, you know? (Samantha)

Other patients made similar comments about decision making early in their hospital stay. A community partner reiterated these concerns:

I can tell you right now, they’re not thinking of the risks. They’re hearing, so you’re saying I can go home and get high and take a pill and I don’t have to be here? That’s what they’re hearing. So, they agree to it. And I bet you 8 times out of 10, they don’t even take the pill. I wouldn’t have. I would have been like, I can go home and get high and take a pill. (CP 1)

Theme: Importance of harm reduction

The above examples suggest a tension between respecting patient autonomy and a recognition of how SUD may impact patient decisions. Addressing this tension, community partners discussed the importance of harm reduction, which mitigates risk and values the rights of people who use drugs:

. . .there’s so much risk and harm involved with doing drugs. But, there’s so much more risk and harm involved with the stigma and criminalization of people doing drugs. (CP 3)

They also endorsed an approach in which HCPs take the time to talk patients through the complexities of their options:

. . .including the person in all of the options. Not just saying, “this is what we need you to do,” but, “these are the options, what’s going to work for you?” Just including them in it, without judging them for the decision they make is going to go a long way. And it’s so simple, it’s just basic human decency. (CP 2)

In reference to this harm reduction approach, two subthemes were revealed during interviews – the necessity of building trust through open dialogue and avoiding bias in antimicrobial treatment decisions.

Subtheme: Building trust

Community partners emphasized the establishment of trust through open and honest communication and ongoing presence to keep PWID engaged in healthcare delivery systems:

. . .if they’re not going to engage in any of that, can we at least get them the things that they will engage in? And I think that that’s why I do appreciate when providers at least send somebody with oral antibiotics. It’s like, “if you’re going to leave and you’re not going to be able to stay on IV, let’s get you something.” (CP 4)

Including PWID and communicating openly throughout the decision-making process not only builds trust, but also fosters increased autonomy and investment in patients’ own health:

I think people with options will make decisions that actually will work for them, and that will lead to people accessing more care, even if it’s not right then in the ED, and even if it’s not being admitted. (CP 6)

Subtheme: Avoiding bias against substance use in antimicrobial treatment decisions

Community partners warned against efforts to judge patient decisions. They also cautioned against requiring SUD treatment before offering outpatient antimicrobial options. One community partner encouraged HCPs to prioritize patient goals and only focus on SUD treatment if the patient is interested; a patient reinforced this point. When asked about how to treat patients who are not interested in stopping drug use, she stated:

You don’t have to [stop using drugs]. But you do need to be told, “We don’t care if you’re using or not. We want to help you to get rid of the infection.” (Samantha)

Similarly, several community partners urged HCPs to let go of concerns about injecting into PICC lines:

I think people are afraid to do that because they’re afraid that they’re going to use them to inject. And, they are. They absolutely will use them to inject, and I think that just is something that people need to accept. (CP 3)

For somebody who has so much vein damage and has such a high dependency on a substance, it is not a choice. You have to find a way to use. [. . .] If somebody was going to use in their PICC line, I think that sometimes it’s a safer alternative. [. . .]and it’s not our decision. I hate when nurses are like, “That’s my PICC line.” It’s like, “No, it’s not. You put it in that person’s arm.” (CP 4)

Accepting patient choices, even when a HCP disagrees, is an element of autonomy and responsibility, as one patient articulates:

I think I’m responsible for everything that happens to me, whether someone’s helping me or not. If I choose not to take their help, then it’s not their fault. If they fail at what they’re trying to do, then that’s because I chose to make the bad choice to begin with to end up where I am. I believe that everybody should own their own decisions and responsibility. (Chris)

Discussion

Patients and community partners had mixed perspectives on hospitalization and antimicrobial treatment decisions for IDU-associated infections. Hospitalization experiences influenced desires to remain in the hospital and likelihood of returning. Patients expressed reasonable concerns about outpatient options such as accessibility, efficacy of the treatment itself, and their own ability to manage their medication or appointments. In making treatment decisions, patients value and see their health outcomes as a priority, though both patients and community partners shared concerns that undertreated pain and/or withdrawal symptoms could affect the decision-making process.

While stigma, restrictions, and discomfort contributed to negative hospitalization experiences that caused some patients in our study to consider self-directed discharge, patient participants also highlighted positive aspects of hospitalization. Consistent with prior literature, participants emphasized building trust with patients and recognizing the individuality of a patient’s circumstances and goals.²⁴ When HCPs engage in conversations with patients about their condition and treatment options, they have the opportunity to inform the risk-benefit analysis that many patients are performing. When outpatient treatment options were not offered to them, patients felt stigmatized, echoing results of other research that denying patient autonomy may result in mistrust in HCPs and avoidance of hospital settings.⁵

We reported in a previous study that most HCPs were supportive of providing patients with outpatient options, but still had concerns about self-directed discharges, “non-traditional” antimicrobial treatment efficacy, and use of a PICC line to inject drugs.¹⁵ In this study, patients and community partners emphasized patient autonomy and suggested that, while patients may not make the choice their care team prefers, taking this choice away can have negative short- and long-term consequences. Furthermore, patients demonstrate that they prioritize their health when they choose to remain in the hospital. Many accounts echoed perspectives from HCPs that the hospital can function as a protective space where withdrawal can be safely managed and SUD treatment is available.¹⁵ However, patients and community partners highlighted the limitations of hospital treatment more prominently than HCPs, and placed greater importance on the need to avoid stigmatization during hospitalization.

Based on these results, we propose that including patients in shared decision making may decrease the likelihood of self-directed discharge by reducing experiences of stigma and better aligning care in the hospital environment with patients’ goals. Prior work suggests an open, non-judgmental discussion with patients about PICC line safety improves outcomes.²⁵ Moreover, understanding patient preferences and goals for SUD treatment and accessing essential services – such as syringe service programs, housing, and others – should be included in these decisions.²⁶ Discussions about outpatient alternative treatments should include topics patients identified as relevant: their access to resources, self-efficacy, and social support. Many of the concerns around resources are determined by an individual’s environment and may be addressable through hospital resources, such as transportation vouchers, or community-based organizations. Through shared decision-making discussions, patients and providers can develop an outpatient plan that addresses infection treatment as well as any SUD treatment goals a patient may have, and identify any additional resources a patient may need for treatment to be successful in the outpatient setting.

Given the high burden of serious IDU-associated infections and associated mortality, a decision-making approach based in harm reduction may optimize patient health and safety.³ This study contributes to our understanding of the factors that influence patients’ decisions about antimicrobial treatment options and can facilitate better shared decision-making conversations. For example, collaborating on improved symptom management or connections to SUD care could incentivize some individuals to remain hospitalized. However, HCPs should also recognize that, in some circumstances, an individual’s experience in the hospital environment may be best addressed by creating a discharge plan that ensures they feel comfortable, respected, and in control of their health decisions. These choices are dependent on individual situations and require communicating with the individual to understand what is important to them. Another potential approach to improve patient safety and engagement in addiction treatment is the use of supervised consumption services, which have emerged in a few select acute care hospitals in Europe and Canada as a harm reduction tool to provide hospitalized patients with a safe space to use unprescribed substances.²⁷ No such services are available in the United States at this time.

Limitations

Our study has several limitations. First, we recruited patient participants from a single academic medical center and community partner participants from only the surrounding region in a rural state; therefore, these findings may not generalize to other communities. Our sample includes adult patients, and perspectives of younger participants may be different. One community partner noted that people with infants have unique concerns, but we were unable to include any. Including missing populations – such as patients seen in the emergency department who declined hospitalization – may have revealed additional themes. Only one patient participant had personal experience with outpatient treatment; as outpatient options are not offered to most patients, there were few with these experiences available to interview at the time of the study. Therefore, most patient participants are responding to hypothetical outpatient treatment scenarios. Additionally, all patients interviewed were hospitalized for complicated infections, such as infective endocarditis, that are typically treated by long-term antibiotics. We did not collect data on the specific infection types and complications for each patient. While this information may impact which treatment options are relevant to a specific patient, we asked all patients about the four treatment options under discussion. Patient responses were sometimes shaped by specific complications, such as mobility issues associated with an infection. Our methodology focuses on elevating patient voices and experiences but does not permit us to make claims about how common these perspectives may be. Finally, this study was conducted during the COVID-19 pandemic; although patient participants did not mention this specifically, it may have influenced the patient experiences with hospitalization reported here.

Further investigation into emerging outpatient treatment options and what is required to successfully implement them would be useful for informing shared decision-making strategies to approach these treatment discussions with patients.

Conclusion

Our study highlights the importance of recognizing each patient with a serious IDU-associated infection as an individual with unique values, goals, and resources. In cases where outpatient treatments represent viable clinical options, patients may benefit from a harm reduction-focused dialogue with HCPs exploring these options. By engaging in shared decision making with these patients, HCPs may be better able to understand a patient’s circumstances and values, and how best to help them meet their treatment goals, paving the way towards better patient-centered treatment outcomes.

Supplemental Material

sj-docx-1-tai-10.1177_20499361231197065 – Supplemental material for “I know my body better than anyone else”: a qualitative study of perspectives of people with lived experience on antimicrobial treatment decisions for injection drug use-associated infections

Supplemental material, sj-docx-1-tai-10.1177_20499361231197065 for “I know my body better than anyone else”: a qualitative study of perspectives of people with lived experience on antimicrobial treatment decisions for injection drug use-associated infections by Amy Eckland, Michael Kohut, Henry Stoddard, Deb Burris, Frank Chessa, Monica K. Sikka, Daniel A. Solomon, Colleen M. Kershaw, Ellen F. Eaton, Rebecca Hutchinson, Peter D. Friedmann, Thomas J. Stopka, Kathleen M. Fairfield and Kinna Thakarar in Therapeutic Advances in Infectious Disease

Footnotes

Acknowledgements

The authors thank the study participants for their time and expertise. They also thank Rebecca Badore, Saba Mostafavi, and Carlos Mendoza for their contributions to this work.

Declarations

ORCID iDs

Monica K. Sikka

Kinna Thakarar

Supplemental material

Supplemental material for this article is available online.

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Supplementary Material

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