Tag: patient advocacy

Navigating Care as a Medically Complex Patient

What Care Exists for Medically Complex Patients, What’s Missing, and Why It Matters

A patient is at the elevator in a medical building seeing the long lists of medical specialists in the building and trying to remember which doctor she is supposed to be seeing today.

Living with multiple interacting conditions means navigating trade-offs, dealing with fragmented care, and finding your way through systems not designed for medical complexity. This article explores what support actually exists for medically complex patients, where care breaks down, and why coordination and integration of care matters.

What Does It Mean to Be Medically Complex?

A person is often described as medically complex when they live with multiple chronic or serious conditions that interact with one another. These conditions are not neatly separated. They affect different body systems, require different specialists, and often demand treatments that overlap or conflict. Care becomes less about fixing a single problem and more about managing trade-offs.

For medically complex patients, care often requires choosing a priority condition. This is not because other conditions matter less, but because treating everything at once can do more harm than good. Multiple medications can interact, side effects can accumulate, and energy, resilience, and recovery time are limited resources.

Sometimes the choice is between partial relief and total exhaustion.  Other times, it is between managing pain and protecting organ function or deciding whether a treatment will make life more livable or simply increase appointments, medications, and side effects. These are not choices patients should have to make alone, yet they often are.

When Specialty Care Misses the Bigger Picture

Specialists are experts in their fields, and that expertise matters. Problems arise when care stops at the boundaries of that specialty. Many specialists focus narrowly on the condition they are trained to treat, without fully accounting for the other conditions a patient lives with. Treatments are prescribed in isolation, as if the body functioned in departments rather than as an integrated whole.

When a treatment improves one condition but worsens another, the patient is left managing the consequences. The specialist may see success, while the patient lives with side effects and a reduced quality of life.

The Illusion of “Coordinated Care”

Specialists often say they will “coordinate care” with the referring physician. For medically complex patients, that phrase sounds reassuring, but it rarely reflects reality.

In most cases, the referring physician is the patient’s primary care provider, not the many other specialists actively involved in treatment. A medically complex patient may be seeing a rheumatologist, nephrologist, gastroenterologist, dermatologist, hematologist, and internal medicine specialist at the same time. These providers are not routinely communicating with one another in meaningful ways.

When a specialist says they will “keep your other doctors in the loop,” what this usually means is that visit notes or test results will be electronically transmitted to one or two providers listed in the system. These records are often received by support staff, uploaded into the chart, and marked as completed. They may never be reviewed in real time by the other treating physicians. Even when they are reviewed, they are rarely discussed across specialties in a way that considers how one treatment plan may affect another condition.

The Burden Placed on Primary Care Providers

As a result, primary care providers are often left attempting to coordinate complex, overlapping care without the time, access, or support required to do so effectively. The average primary care physician can see a patient only every six to eight weeks, sometimes longer. For a medically complex patient, that span of time is significant.  Medically complex patients often need to be seen by their PCP on a more regular basis, especially when conditions flare, or when  side effects from one treatment make other conditions worse.

During those weeks of waiting to see their PCP, medications may be started, stopped, or adjusted by multiple specialists. Side effects can add up, conditions can flare, and the patient’s health can decline substantially before the next primary care appointment is even available.

This is not a failure of individual physicians, it is a structural problem. The system is not designed to support the level of communication and responsiveness medically complex patients require. What results is care that forces patients and primary care providers to bridge gaps that should not exist in the first place.

What Is a Critical Care Manager?

A Critical Care Manager is a healthcare professional who helps coordinate care for patients with serious, complex, or high-risk medical needs. The role exists to bridge gaps between providers, treatments, and systems when a patient’s care has become too complicated to manage through routine appointments alone.

Despite the name, a Critical Care Manager does not work only in intensive care units, and the role is not limited to end-of-life care. In outpatient and chronic illness settings, Critical Care Management refers to coordination-based care for medically complex patients. It is often provided by a nurse, nurse case manager, social worker, or care coordination specialist working within a medical practice, hospital system, or insurance plan.

The core purpose of a Critical Care Manager is coordination, not making specific diagnoses.

What Does a Critical Care Manager Actually Do?

A Critical Care Manager focuses on the full scope of a patient’s health. This may include coordinating communication among multiple specialists, reviewing medications for interactions or conflicting goals, tracking changes across conditions, helping prioritize treatment when everything cannot be treated simultaneously, identifying red flags early, assisting with referrals and authorizations, and helping patients understand how different treatments interact.

For medically complex patients, a Critical Care Manager may be the only professional who consistently sees the entire care landscape at once.

How Medically Complex Patients Qualify for Critical Care Management

Eligibility varies by healthcare system and insurer, but patients typically qualify when they meet several criteria, such as having multiple serious chronic conditions affecting different body systems, conditions that conflict in treatment, frequent specialist involvement, a high medication burden, functional decline, or elevated risk for complications without close monitoring.

Medical complexity is defined by the interaction of multiple conditions, not just by the number of diagnoses a person has. A patient whose conditions must be balanced against one another is often more complex than someone with many conditions treated independently.

Many patients who qualify for Critical Care Management never receive it simply because it is not offered or explained, and they don’t know to ask. There are eligible patients who have no idea the service exists, despite evidence that effective care coordination reduces emergency visits and extended hospitalizations. This benefits both patients and insurers, yet access remains limited.

How Critical Care Management Differs from Typical Primary Care

Primary care physicians are essential, but the structure of primary care limits what can realistically be provided to medically complex patients.

Typical primary care involves brief scheduled visits, a focus on immediate concerns, limited coordination time, reliance on specialist notes, and long intervals between appointments. Primary care providers are not set up to coordinate complex care.  They simply do not have the infrastructure to follow up with a plethora of specialists, track medications from multiple doctors, determine possible drug interactions, and take urgent calls or texts from a medically complex patient when they are in crisis or need immediate assistance.   

Critical Care Management-supported care offers ongoing oversight, active monitoring between visits, intentional cross-specialty communication, early intervention when problems emerge, and a designated professional responsible for coordination.

The difference between primary care and critical care is not skill or commitment, it is timing and infrastructure. 

Why Critical Care Management Matters

For medically complex patients, the greatest risk is not a single diagnosis, it is fragmented care. When treatments are prescribed independently, the patient becomes the coordinator by default. The patient may have a thorough understanding of his or her diagnoses, but this still doesn’t make the patient a medical doctor.  When patients have to coordinate their own care, it becomes unsafe and eventually unsustainable. 

Critical Care Management fills a gap between specialties and competing diagnoses. When done well, it reduces medical crises, prevents harmful treatment conflicts, and supports decisions that prioritize overall stability rather than treating one condition or set of symptoms at a time.

Critical Care Management vs. Chronic Care Management

One of the most confusing aspects of complex care is overlapping terminology. Critical Care Management and Chronic Care Management are often abbreviated the same way, but they are not the same thing.

Chronic Care Management

Chronic Care Management is a Medicare and insurance billing program designed for patients with two or more long-term conditions. It typically involves documented care plans, periodic check-ins, medication lists, and minimum time requirements for billing.

These services are often administrative and may be handled by office staff or third-party vendors. Chronic Care Management can be helpful for stable patients with predictable needs. It is not designed for patients whose conditions interact or change rapidly.

Critical Care Management

Critical Care Management is a care model, not simply a billing category. It focuses on real-time coordination, prioritization, and risk management. It recognizes that medically complex patients cannot safely wait weeks between appointments while conditions evolve.

Why the Difference Matters

Many patients are told they are “already receiving CCM” when what they are receiving is Chronic Care Management. That reassurance often collapses when real coordination is needed.

Basic documentation does not prevent medication conflicts. A monthly check-in does not catch a cascading medical decline. Shared records do not necessarily equal collaboration.

What Is Physiatry?

Physiatry, also known as Physical Medicine and Rehabilitation, is a medical specialty focused on improving function, quality of life, and overall stability for people with injuries, chronic illnesses, disabilities, and complex medical conditions.

Physiatry looks at how multiple conditions interact and how they affect daily life. The goal is to help the patient live a good, productive life rather than a cure at all costs.  Improving a quality of life for those who are medically complex is the goal of physiatry. 

What Is a Physiatrist?

A physiatrist is a medical doctor who specializes in physiatry. Physiatrists are medical doctors who are fully trained in disease processes, medications, and medical risk, but whose clinical focus is on integration rather than treating conditions in isolation.

Physiatrists commonly work with patients whose care does not fit neatly into a single specialty.

Why Physiatrists Matter for Medically Complex Patients

For medically complex patients, the central question is often not Can this be treated? but Should it be treated now, and at what cost?

Physiatrists are trained to engage with that question directly. They understand that stability, function, and living a “good” life are legitimate clinical priorities.

Why Most Patients Are Never Told Physiatry Exists

Physiatry is frequently underutilized because it does not align with diagnosis-driven referral pathways that insurance companies use. It does not “own” a single disease. As a result, patients are often referred only after injury or crisis, rather than earlier when coordination could prevent decline.

Insurance Coverage and Access Barriers for Physiatry

Physiatry is generally covered by insurance, including Medicare, but long-term physiatric care is often difficult to maintain. Insurance coverage is commonly tied to discrete events rather than ongoing complexity. There also aren’t many physiatrists and they are unevenly distributed throughout the United States, making access difficult even when coverage exists.

A specialist may consider a treatment successful, even when the patient is left coping with significant side effects and a lower quality of life.  What looks like success on a chart can feel like loss to the patient who must live with the side effects.

Medically Complex Patients Deserve Both Coordination and Ongoing Follow-up

Medically complex patients are often labeled as difficult or noncompliant, when the real issue is a system not designed to manage layered, interrelated conditions.  Effective care requires coordination and ongoing follow-up.

What Medically Complex Patients Can Ask For

Patients can ask who is coordinating their care, how treatments interact, whether someone is viewing the whole picture, and whether physiatry or care coordination might help.

Advocacy does not mean demanding perfection. It means asking for care that acknowledges reality.

A Final Reminder

Medically complex patients are experts in their lived experience. Their bodies, symptoms, and limits cannot be reduced to isolated diagnoses or single appointments. Care delivered in pieces will always fall short for patients whose lives are shaped by overlapping conditions.

Complex care requires coordination, communication, and ongoing follow-up. It requires systems that recognize continuity as essential rather than an optional component.  When responsibility for integration is placed on the patient instead of the system, the  gaps in care that occur become predictable as well as  harmful.

Listening to medically complex patients is not a courtesy, it is a clinical necessity. Until care models reflect that truth, patients will continue to shoulder the burden of navigating systems that were never designed for complexity in the first place.

Here are some more articles by Jan Mariet that you might enjoy reading.

Why Our Healthcare System Often Fails the People Who Need It Most – Jan Mariet’s A Day in the Life

Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Do you have a comment or question? Feel free to let me know below.

Reimagining Accessibility:  Undoing Ableism Among  Disabled and Medical Communities

Ableism is the assumption that being able-bodied or non-disabled is the default, the goal, or the standard everyone should be measured against. People who do not fit that mold are expected to adapt, work harder, or accept being excluded.

Ableism comes in many forms. It can be intentional or unintentional, external or internal, and it often appears as judgment, disbelief, or praise that comes with conditions. At its core, ableism is the belief that some bodies and abilities are more valuable than others.

Ableism is prevalent not only in the non-disabled part of society, but even among those with disabilities and within the medical community that interacts with them. One common form shows up as judgment. It often sounds like, “I have this disability and I manage to work, so she should be able to work too.”

This way of thinking assumes that all disabilities function the same way, that all bodies respond similarly to effort, and that outcomes are purely a matter of willpower. It ignores differences in severity, progression, pain, fatigue, comorbid conditions, and access to support. It also ignores the fact that some people are paying an enormous physical and emotional price for what they are managing to do.

Another deeply ingrained form of ableism is the belief that if you want something badly enough and are willing to work hard enough, you can achieve it. Many of us were raised on this idea. For people with disabilities, this belief can be especially damaging. Some push and push, convinced that if they just try harder, success will follow. Instead, they worsen their condition, exhaust themselves physically and emotionally, and slowly break their own spirit. When they fail, they blame themselves, because they truly believe success would have been possible if they had worked hard enough. That belief itself is ableist, even when it comes from within the disabled community.

Intentional ableism occurs when barriers are known and deliberately ignored or dismissed. This includes business owners who refuse to add ramps or accessible entrances because they believe it would ruin the appearance of a building, even though they understand it excludes wheelchair users.

It appears when employers decline to hire qualified candidates after learning they need accommodations, without ever discussing what support might make the job accessible. It shows up when events are consistently held in inaccessible spaces and disabled people are told they can look at photos later or simply miss out.

Intentional ableism also includes denying legally required accommodations because they are viewed as too costly or inconvenient, or framing disabled people as burdens rather than as members of the community. In many cases, accessibility features are added only after complaints or legal action, and even then are implemented in the most minimal way possible.

Another type of ableism is unintentional. Most unintentional ableism is not about being unkind. It comes from assumptions people do not even realize they are making. It can sound like telling someone, “If I can push through the pain, so can you,” without recognizing that another person’s body or condition works very differently. It appears when spaces are designed with stairs as the primary entrance and accessibility is treated as an afterthought, even though exclusion was never the intent.

Unintentional ableism includes praising disabled people for ordinary tasks because those activities are assumed to be extraordinary, or believing that assistive devices alone have solved accessibility problems. Comments like “You do not look disabled” are often meant as compliments but still reflect harmful assumptions. It also appears when activities are planned around long periods of walking or standing, and organizers are genuinely surprised when someone cannot participate.

A third type of ableism is external. External ableism comes from the world around us. It exists in systems, policies, environments, and interactions that assume non-disabled bodies and minds are the norm. It includes buildings designed with stairs as the main entrance, workplaces that measure productivity without accounting for pain or fatigue, and public spaces that technically meet accessibility requirements but are still functionally unusable.

External ableism also shows up in attitudes, such as questioning whether someone truly needs accommodations, assuming disability limits intelligence or worth, or praising disabled people only when they appear to overcome their limitations in ways that make others comfortable. These messages are reinforced through social expectations, media portrayals, and institutional practices that treat disabled people as exceptions rather than as part of the population.

The fourth type of ableism is internal. Internal ableism happens when cultural beliefs about productivity, independence, and worth are absorbed and turned inward by people with disabilities themselves. It can look like believing you should be able to do something because others with similar diagnoses can, even when your body is clearly telling you otherwise. It shows up as guilt for resting, shame for needing help, or pushing past safe limits because you were taught that effort equals worth.

Internal ableism can also mean minimizing your own needs, delaying the use of assistive devices because they feel like a sign of failure, or blaming yourself when accommodations are necessary. Over time, this pressure erodes self-trust and self-compassion, leaving people feeling inadequate for limitations that are not personal failings.

Disabled people are often just as affected by external and internal ableism as their non-disabled peers because they grow up in the same ableist society as everyone else. Long before a disability is acquired, recognized, or diagnosed, most people absorb cultural messages that equate productivity with worth, independence with success, and limitation with failure.

Those beliefs do not disappear simply because someone becomes disabled. Instead, they are carried forward and applied both to yourself and to others with disabilities. When disabled people judge another person’s limitations, compare coping strategies, or assume that effort should lead to the same outcomes for everyone, they are often drawing on standards they were taught long before they had reason to question them.

Many disabled people have also been rewarded for acting as if they were able-bodied for as long as they could. Pushing through pain, minimizing symptoms, and avoiding accommodations are often praised by teachers, employers, doctors, and even loved ones.

Over time, this reinforcement teaches people that acceptance comes from appearing capable and low-maintenance. When those expectations can no longer be met, discomfort, judgment, or resentment often follow. This fuels external ableism toward others with disabilities and deepens internal ableism directed inward.

There is also fear at the center of this. Disability is unpredictable, and progression or decline can be deeply frightening. Judging another disabled person for needing more help can become a way of distancing yourself from that fear, as if believing “that will not happen to me” offers protection.

Internal ableism often grows from the same place. Admitting the full extent of your limitations can feel like giving up or confirming the very stereotypes society fears most. As a result, many disabled people hold themselves to impossible standards and, without intending to, reinforce those same standards in others.

Medical ableism adds another powerful layer to this experience. It appears in how chronically ill and disabled people are viewed and treated within the healthcare system. Medical care is often guided by the assumption that the goal is a return to a previous version of normal, rather than helping someone adapt to a changed body and build a sustainable life within new limits. When recovery to a former level of function is not possible, care may stall, shift into dismissal, or quietly withdraw.

New or worsening symptoms are frequently dismissed as “just part of the disability,” even when they represent meaningful changes in function or quality of life. Chronic pain, fatigue, neurological symptoms, and digestive issues are especially likely to be minimized.

Instead of being investigated, they are folded into an existing diagnosis and treated as something the patient should simply endure. Over time, patients learn that reporting symptoms may not lead to help and may even mark them as difficult.

Quality of life is also often undervalued in medical decision-making. The focus tends to remain on lab results, imaging, or disease markers, while daily function, comfort, and dignity are treated as secondary concerns.

For many chronically ill and disabled people, some level of pain or limitation is unavoidable. The goal is not perfection, but a life that is manageable and meaningful. When that reality is ignored, patients are left surviving rather than living.

Pain management exposes medical ableism particularly clearly. Some patients are denied necessary medication because of fear, stigma, or rigid policies that fail to account for individual circumstances. Others are labeled as drug-seeking simply for advocating for relief that would allow them to function at all.

At the same time, some patients are given pain medication dismissively, not as part of a thoughtful plan to improve quality of life, but as a way to end the appointment without engaging in deeper care. In both cases, the message is the same. The lived experience of the disabled person is not worth sustained effort.

Medical ableism reinforces the idea that disabled lives are inherently less, or that suffering is an acceptable condition of chronic illness. It discourages collaboration, dismisses patient expertise, and places unrealistic expectations on bodies that have already changed. Recognizing medical ableism requires a shift away from restoring a past that may no longer be possible and toward supporting a new normal that prioritizes safety, dignity, and quality of life.

Ableism is not just something that happens to disabled people. People with disabilities are just as likely as those without disabilities to be influenced by ableist thinking. It is so deeply woven into our culture, our work ethic, and our way of life that no one, no matter how well-meaning, is fully exempt. It is something we must all actively unlearn.

Actively unlearning ableism is not a one-time realization. It is an ongoing practice of noticing, questioning, and changing how you think, speak, and act.

It starts with awareness. This means paying attention to your own assumptions about productivity, independence, pain, and worth. When you catch yourself thinking that someone should be able to do something because you can, or because another disabled person can, pause and ask where that expectation came from. Many of these beliefs are inherited from culture, not grounded in reality.

Listening to disabled voices is essential, especially voices that differ from your own experience. Disability is not one-size-fits-all. People with different conditions, severities, resources, and support systems will have very different limits and needs. Believing people when they describe their pain, fatigue, or barriers, without comparison or judgment, is a key part of unlearning ableism.

Unlearning ableism also means redefining success. Instead of measuring worth by productivity, endurance, or independence, it means valuing sustainability, safety, dignity, and quality of life. Rest is not failure. Needing help is not weakness. Using accommodations is not giving up. These shifts are often hardest for disabled people themselves, because internal ableism is reinforced by praise for pushing through at any cost.

Another important step is examining how you respond to accessibility. When accommodations are inconvenient, slow, or expensive, do you see them as burdens or as basic inclusion? Do you view accessibility as optional or as a fundamental part of participation? Challenging those reactions, even silently, is part of the work.

Finally, unlearning ableism requires self-compassion. Everyone raised in an ableist culture will reflect it in some way. Catching yourself in ableist thinking does not make you a bad person. It gives you the opportunity to choose differently. Over time, those choices add up. Unlearning ableism is less about perfection and more about the willingness to keep noticing, learning, and adjusting.

Thoughts from the Author: There are many adaptations that help people with disabilities function in an inaccessible world. Wheelchairs, rollators, canes, crutches, speech-to-text, text-to-speech, visual enhancements, eye-tracking technology, and more. These tools are valuable and often essential. But when the world itself remains inaccessible, the presence of adaptations can give able-bodied people the false impression that accessibility has been solved.

A person in a wheelchair still cannot cross the gap to board a train. A person using a rollator still cannot climb an outdoor flight of steps with no railing, like those found at historic and grand sites across the country. Someone using crutches may be completely exhausted after navigating a gravel path with exposed roots and brush. An able-bodied person may see a wooden pier and assume it is accessible, without realizing that uneven boards can exhaust a rollator user or leave someone using a cane or crutches constantly off balance.

A temporary ramp placed over a few steps at the entrance of an otherwise accessible restaurant may be too steep for a wheelchair user to navigate independently. Relying on strangers for physical safety turns participation into a risk calculation rather than a simple outing.

Most people with disabilities understand that not everything can be made accessible. A historic colonial manor cannot have its second floor made accessible without altering the history being preserved. Narrow hallways that are too tight for wheelchairs or rollators cannot simply be fixed.

But in modern construction, accessibility is still too often treated as an afterthought. It is framed as a regulation to be met cheaply, while millions are spent on dramatic staircases and revolving front doors. Disabled access is routed to side entrances or long zigzag ramps that lead to less prominent doors, sending a clear message about who the space was designed for.

Older buildings are frequently retrofitted with small wheelchair lifts that require finding someone with a key and waiting for another person to operate the equipment. From experience, that person is often located in a part of the building the wheelchair user cannot reach without the lift. This raises serious safety concerns. In an emergency, disabled people are once again forced to rely on strangers, potentially putting multiple lives at risk because exits are inaccessible.

And yet, many people without mobility disabilities believe the world is fairly accessible now. The harder question may be whether those of us who are disabled, but not visibly or mobility impaired, sometimes hold the same belief. Ableism is not just something that happens to disabled people. It is something we all must actively unlearn.

Other articles you might enjoy include: Can I or Should I? Living With Disability, Risk, and Hard Choices – Jan Mariet’s A Day in the Life

The Disability Catch-22 – Jan Mariet’s A Day in the Life

Designer Shoes and Disability: Why Judging Others Is Obscene – Jan Mariet’s A Day in the Life