Primary Care Providers' Experiences Caring for Complex Patients in Primary Care

Danielle F. Loeb; Elizabeth A. Bayliss; Carey Candrian; Frank V. deGruy; Ingrid A. Binswanger

Disclosures

BMC Fam Pract. 2016;17(34) 

In This Article

Results

Participant characteristics (N = 15) are described in Table 1.

Overview of PCP Experiences

PCPs described complex patients as those with multidimensional needs, such as socio-economic, medical, and mental health. A vision of optimal care for complex patients emerged from the data, but PCPs also encountered significant local and larger healthcare system level barriers to providing such care. To overcome these barriers, PCPs depended on professional values and individual care strategies. We developed a schematic illustration to illustrate this problem of inadequate PCP resources to meet the challenge of caring for complex patients (Fig. 3).

Figure 3.

Schematic Illustration of Primary Care Providers (PCPs) Caring for complex patients in context of local and healthcare system barriers with inadequate resources

Complex Patients

Participants described complex patients as those with medical, mental health, and social needs. One CHC participant described a typical highly complex patient:

[This 52-year-old patient] has diabetes, hypertension, gout, hyperlipidemia, peptic ulcer disease, asthma. His med list is at least two pages long. He was homeless and had depression and schizoaffective [disorder]… He had only been out of jail for a couple weeks. He had no insurance or anything…. He wasn't eating regularly, so he was afraid to take his insulin…

Optimal Care

Participants described the needed care for complex patients and PCPs' ideal role in this care, which we termed "optimal care". We defined optimal care as the activities they described performing in their role as PCPs that were most helpful to their patients and rewarding for them. Coordinating care, preventing hospitalizations, and building patient trust were identified as key elements of optimal care.

Coordinating Care

For most participants, managing discussions among specialists and helping patients to make informed decisions was one of their most important roles. One CHC participant discussed the importance of the PCP leading the healthcare team:

I also think that for some things you just need to have someone who is in charge. For the complicated patients who haven't done well, nobody has said, 'I'm in charge. I'm taking care of you'. You know, 'I'm going to be the captain of this ship.'

One UC participant described coordinating care for her complex patients as both necessary and fulfilling.

Every time I see him I've ended up… contacting 6 or 7 other providers. We've all decided that's what it is going to take to make sure that this individual gets what he needs… I feel like I do have a role and I really feel like I'm fulfilling my role as a coordinator for him…and I see it helping him become more confident in his decisions and about his ability to take care of himself.

Preventing Hospitalizations

Many participants were highly satisfied helping their patients avoid hospitalizations by care coordination, frequent follow-up visits, and careful attention to their medical regimens. One CHC participant explained, "Being outpatient, many things can fall through. When you can make a smooth transition for a patient without them ending up in the hospital… that is a success story."

Building Trust

PCPs discussed developing a trusting relationship with their patients as therapeutic for patients and as fundamental to their ability to provide optimal care. One UC physician reported:

[I]t's almost like we're attached to each other. [Complex patients] always know that even if all the other doctors [specialists] they are seeing aren't listening, they can come and have a central place where I can help coordinate. So I feel like they trust me, which is probably the most rewarding aspect of their care.

Healthcare System Factors

PCPs described healthcare system factors that interfered with their ability to provide optimal care, including payment systems, patient insurance issues, poor access to mental healthcare, and the fragmentation of care.

Payment Systems

Some UC participants expressed the belief that the prevalent fee-for-service payment system undermined effective patient care, because payment was focused on discrete services rather than coordination of care. One UC PCP described large amounts of uncompensated time coordinating care:

A patient I take care of who has multiple sclerosis comes in once a year…otherwise it's all done by phone or communication with her visiting nurse. Over the course of a year I might spend 15 or 20 h on her care. I get paid for the 40 min that she spends in my office once a year.

Uninsured or Underinsured Patients

Both UC and CHC participants cited lack of insurance or underinsurance as a barrier to optimal care for complex patients. For example, on UC PCP explained:

[H]e has insurance, but with all of his 20 different medications, it costs him over $200 a month for his prescriptions. So he [rations]…he doesn't take all of his meds… This is a guy who works 40 h a week, who has insurance, but still can't afford everything.

Poor Mental Health Care Access

PCPs at all clinics expressed frustration with challenges in accessing mental health care. One UC participant discussed the lack of resources for patients with suicidal ideation:

I think the access to mental health assistance is so poor… You know, somebody comes in and says they are going to hurt themselves, our only option is to send them to the emergency room… Often times you can't get them to be seen anywhere.

Fragmentation of Care

PCPs described barriers that were consistent with the concept of care fragmentation, defined in the literature as "having multiple decision makers make a set of health care decisions that would be made better through unified decision making",[27] interfered with patient care. This issue was particularly salient for patients with mental illness. One UC PCP expressed frustration over the challenges he found communicating with psychiatrists outside of his system. Referring to patients seen at a local behavioral health organization: "They don't use the same record system. So, I can't see what the psychiatrist is doing if they [my patients] do manage to land in a psychiatry office. It is hard to call and speak with them."

Local System Factors

Within local healthcare systems, participants struggled with insufficient clinical support, challenges communicating with specialists, and productivity demands.

Insufficient Clinical Support

Providers reported lack of case management and social work support in their local clinics as important barriers to optimal care. Social workers were identified as an important needed resource to improve care for complex patients. One PCP from a UC stated:

We essentially don't have the social worker…. I mean getting people to appointments and making sure they have [transportation service] or does someone need to be checked up on. We don't have help with any of that, and, to be honest, a lot of it just goes to the wayside because we don't have help…

While participants in the CHCs did have a social worker, they did not have case management or mental health services. With case management support PCPs believed they could more effectively use their time.

Communication With Specialists

While communication with specialists was fundamental to PCP's ability to provide comprehensive care to complex patients, many participants described this communication as time consuming and, at times, impossible. One UC PCP explained, "The reality is, you can try to page the doctor [specialist]… but you end up leaving a message and then they may or may not get back to you."

Productivity Demands

PCPs at both UCs and CHCs expressed frustration over productivity demands. CHC PCPs focused on lack of flexibility with visit length.

There is no ability to have more time with individual patients. If you are a provider who has a lot of complicated patients, that doesn't affect [i.e., lower] your productivity expectations or [lower] your panel size expectations.

UC PCPs focused on pressures around billing and compensation unrelated to patient care:

[T]he things that really matter have almost nothing to do with how we're paid. In order to take care of these people, we have to have the background knowledge of their life experiences and their multiple diseases and their multiple medicines. Their spouse died of cancer and they've had problems with depression and a life long history of alcohol… What we get paid for is…[how] many body parts we examine and…[how] many different things that we've asked them…

PCP Professional Values

When discussing successful approaches to managing patient complexity, participants emphasized the importance of values of professionalism and self-reflection. They relied on these professional values to provide optimal care in the face of significant system barriers.

Professionalism

The theme of professionalism emerged, which was described as rendering appropriate care despite barriers. PCPs ensured patients received the care they needed, despite inadequate resources, by spending extra time caring for complex patients. Personal sacrifice and the placement of patient needs over their own personal needs were noted as integral to the provision of effective care. For example, one UC participant stated: "So really I think, if you approach it with an attitude of service that you are a servant to these people and you really have to kind of efface your own needs…"

Another UC participant discussed the importance of following complex patients closely regardless of whether those activities are compensated:

Like sometimes it is like staying late at night to call a patient when they are in the hospital somewhere to make sure they are going to make an appointment to come back in and be seen. Or you know, you make a referral and hey, I noticed you didn't go to your referral. What's going on? Why didn't you make it? … It takes time and we don't get paid for any of that. Nobody cares whether or not you stay late to do that.

A CHC participant expressed a similar idea, "And the professional piece, realizing that sometimes I do need to work through lunch with the dementia patient where the family is fighting." However, that PCP continued to note the possible consequence of self-sacrifice, "I mean the flip side of that is I'm so frustrated with our system that I don't do a lot of clinic."

Self-reflection

PCPs emphasized the importance of self-reflection when treating complex patients, especially those with challenging communication styles. A UC PCP explained, "I guess I try to be careful. When something about a patient makes you unhappy or uncomfortable, some of it has to be about you, you know? And so I think just recognizing maybe it's not all them."

PCP Personal Strategies

PCPs described the following strategies for taking care of complex patients: getting to know their patients, frequent visits, prioritizing issues, and setting limits.

Getting to Know Patients

The most common strategy PCPs expressed was the importance of getting to know their patients. Once PCPs understood patients' complex milieu of medical, mental health, and social issues, they were better able to prioritize issues and help their patients make healthcare decisions in alignment with their goals. A CHC PCP described, "[it's] seeing where they are and where they are willing to go and to try to meet them part way." The PCP offered the following example:

The one gentleman who has had the significant alcohol problem … it wasn't that he admitted he was going to quit drinking, because he is just nowhere near that right now, but he was willing to admit the amount he is drinking and the amount he is eating, is really not good for his overall health. And he knows the alcohol is not good for his overall health. But he doesn't really want to starve to death. And that is sort of what he's doing right now. And so he is willing, maybe, to cut back on the alcohol and eat a little bit more. I mean it's not really that much of an accomplishment, but I think it's a start …

Another CHC PCP explained the personal reward of getting to know patients well:

I think in talking to people and realizing what else is going on with them, and that is driving some of their difficult or not adherent behavior, or other things, I find that to be rewarding.

Frequent Visits

PCPs scheduled frequent visits with their complex patients to avoid crises, lapses in the medication treatment, and hospitalizations.

Prioritizing Issues

One of the strategies emphasized was prioritizing issues during patient visits. A CHC PCP suggested, "Try to focus on whatever issues are most going to affect the patient's health in terms of their quality of life and their ability to function."

Setting Limits

Setting limits with individual patients emerged as a theme. Setting limits was particularly important in caring for patients with chronic pain requesting opioids and with patients with challenging communication styles. On CHC PCP explained their approach, "I go in there, and I'm honest: This is what I'm going to do; this is what I'm not going to do; and, then, that's the way I follow through."

Systemic Changes

Participants described systemic changes to their practice that would improve the care of complex patients, such as additional assistance from team members. One UC participant expressed the need for team-based approaches: "[I]t really needs to be more than just the physician… I mean especially with the complex patients." The UC clinics were starting to transition to a Patient Centered Medical Home (PCMH) model. The same provider described positive early experiences with this model.

We have switched to a Medical Home team orientation over the last year and it's been extremely rewarding… for a medically complex patient it helps… to have other staff help proactively monitor people's complex conditions.

While participants had minimal experiences with team-based models of care, some perceived teams as strategies to meet the challenges involved in caring for complex patients.

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