August 3rd, 2017
“As I Lay Dying” — Patient Readmission and Non-Compliance
Alexandra Godfrey, BSc PT, MS PA-C
As I tie the last knot in a neat row of nine sutures, the night nurse calls me to room two. I drop my hemostats, peel off my gloves, and tell my patient I will be back. Across the hall, I find a girl thrashing around the gurney, chest heaving up and down, hands clasped around her abdomen. She stops moving only to retch into a bag. Her gasping breaths smell of pear drops, nail polish, and sugar candy. The ER attending is soon by my side. We know this girl. She presents this way every one to two months. I give her a nod of recognition, then start looking for IV access. Later, the labs confirm our clinical suspicion; she is in severe diabetic ketoacidosis (DKA).
When I review this patient’s records, I count seventeen admissions (to various facilities) for DKA in the past two years. Her HbA1c averages 14. Each time, the patient is admitted to ICU, treated and stabilized, then discharged with a plan for follow-up. Prior to discharge, the patient receives education regarding the management of diabetes, a consultation with a dietitian, a referral to a specialist clinic, and resources to aid her with her healthcare. Both psychiatry and social work have evaluated this patient. In spite of this, the patient continues to miss appointments, fails to refill her meds, and pays little attention to important factors, such as diet, exercise, and glucose control. Reasons for non-compliance, include: I am tired of being sick, insulin makes me fat, my boyfriend stole my meds, and I don’t like doctors.
The patient’s recurrent admissions have resulted in job loss, relationship breakdown and economic stress. The patient is stabilized during every admission, but she never appears to retain any of the education or advice given to her. Or if she does, she pays little attention to it. Control of her diabetes worsens. She lives crisis to crisis.
Truth is, she is not alone. Most emergency medicine providers have encountered patients like this, as have most of the broader medical community.
Let’s face it — the thoughts, actions, and motives of our patients frequently don’t make sense to us. And every human has a thought process that tumbles with varying levels of rationality, sometimes intentional and other times unintentional. Delusions and rationalizations along with a layer of narcissism and a sad tendency for self-destruction are part of the human narrative. But for the most part we don’t dance with death. Certainly, our patient’s narrative may sometimes seem irrational, but as clinicians we need to find ways — must find ways — to work around it.
Way back, Flexner et al in their article, “Repeated Hospitalizations for Diabetic Ketoacidosis: The Game of Sartoris” compared such patients to Faulkner’s Sartoris family. The Sartoris family appears hell bent on self-destruction. After the loss of a beloved son and brother in World War I, the family lives life on the edge and suffers for it. Their lives spiral out of control and the only resolution seems to be death, which inevitably comes. The authors liken the behaviors of this family to those of patients with recurrent admissions for DKA. They suggest that these patients – with theoretically manageable diseases – are, like Faulkner’s family, hellbent on a not-so-glamorous death. I am unsure whether these patients are truly hell-bent on death but I found the idea thought-provoking.
Recurrent admission for the same diagnosis is a serious problem for patients, providers, and healthcare systems. Non-compliance with medications and failure to follow up is associated with greater mortality and morbidity. The long-term complications of poorly controlled diabetes are devastating. We don’t want this for our patients. It contradicts the basic tenets of medicine, what we are about. Additionally, patients who are repeatedly readmitted consume a disproportionate amount of health care resources. Readmissions create problems with reimbursement. Furthermore, physicians and other healthcare providers struggle to manage these patients: they consume more time and resources, appear to not care about their health, and can trigger both frustration and compassion fatigue. The hard part, it seems, is not the management of the crisis but the prevention of future crises.
If we look at this problem logically, we can identify some manageable factors associated with patient non-compliance and readmission:
• Poor patient understanding of the disease or treatment
• Inadequate follow-up or confusion about follow-up
• Comorbidities such as substance abuse and psychiatric diagnoses
• Financial difficulties
• Lack of insurance
• Premature discharge
• Lack of discussion about care goals
• Low health literacy
I like to believe that there are ways we can improve the health of these patients. I do not think we have to resign ourselves to the fictional games of Faulkner. Undoubtedly, I have my own thoughts on how we do this. But I would prefer to hear the perspectives of my esteemed colleagues in the wider medical community rather than focus on my own narrative. So —
1) What can we do to prevent these readmissions?
2) How do you establish an effective care partnership with these patients?
An excellent expose of this problem – one of the greatest in “modern” medicine – patient mal-compliance (self prescribing, non-adherence, lost to follow-up, etc).
Psychiatry has a specific “V Code” – for the diagnosis of conditions that are NOT mental illnesses, but may nonetheless be the focus of attention, concern or therapy – for example, poverty, non-compliance with medical advice, etc. Someone noticed that these conditions were THE determinant of the patients outcome – not their psychiatric diagnoses!
P.S. By “modern” medicine I mean that the capacity of the (ideal) medical care system may EXCEED that of the capacity of the patient. For example, if this patient was to have taken cradle to grave preventative measures applied in a family and health care positive health culture context much of this would be reduced.
Hi Max –
I found it interesting to think that management of V codes might offer better outcomes than management of psychiatric diagnoses. I think sometimes it is “easier” to opt for a psychiatric diagnosis than it it is to usefully engage other variables that affect outcomes.
I am certain an ideal system would provide for better outcomes. You comment that this in some cases would be a system that exceeds the capacity of the patient was interesting to me and I am still mulling that one over.
Thank you for your thought provoking insights.
I would try to find out exactly what this woman does during the week before each of these episodes. You might find a common factor, or you might find that she is just plain nuts.
Jim – this would be an excellent way of finding triggers for non-compliance. Once you find those, you may be able to address them.
I feel like if you get ownership to her disease state along with acceptance including “normalizing” her illness…you might get her care about herself. DBT therapy works on such behaviors and thought processes
In nearly 3.5 decades of EM work, this is a frequent scenario.
I revert to wise words from an elderly judge from whom I was asking to treat without consent.
A synopsis of several of these conversations, the patients having been cleared of psych or drug overlays:
A. Family wants Dad admitted (and he didn’t) because he drinks too much:
“In the United States, we are free to do with our bodies as we wish, even if that means drinking ourselves to death.”
B. Patient refusing treatment having (likely) swallowed drug evidence:
In the United States, we are only as free as we are free to accept the consequences of our actions.”
If a patient (not clouded by psych or drug problems) is making it clear what their values are, ought we not honor those values, even though we may personally disagree?
I may disagree with a Jehovah’s Witness’ choice, but, because they are willing to knowingly accept the consequences of their choices, I will honor them.
While working in a pediatric ICU I have witnessed many times the Drs getting legal control of children taken away from the parents who’s religions forbid certain medical treatments. It always amazed me that the parents were actually relieved that the decision to treat was out of their hands. They truly wanted the treatment but didn’t want to be criticized by there church. I just can not understand this behavior of both the physicians and the parents. Informed consent is just a myth for the most part in my opinion.
I find this very interesting. Thank you for offering a dimension I had not considered: the parents not wanting to oppose their church/religion or culture but wanting their child to receive the recommended treatment. There’s so many layers to noncompliance or refusal of care isn’t there? I am certain also that how we respond as medical providers varies across the world too – you only need to look at the recent controversy regarding the care of Charley Gard in the UK to see this.
Your comment regarding informed consent reminded me of some of the reading I did about patients leading AMA. You are not alone in thinking informed consent is a myth.
Many of these patients have truly chaotic, dysfunctional family and home lives from which they lack the capacity–due to economic or other social factors. Being physically sick enough to be admitted to the hospital gives them respite from these situations, while still avoiding the stigma of a psychiatric diagnosis. Always consider the possibility of domestic abuse/violence in these patients, male and female alike.
Kathryn – I think you are correct. Some of these patients do have a dysfunctional chaotic home life and this has become their escape. The reasons given for non-compliance often reflect this. Provision of the necessary resources needed to step away from the chaos may help. I suspect though (as Max states above), you would need a heath system that has the capacity to offer “ideal care”. Unfortunately few do, There’s often so much that needs addressing that it becomes beyond the scope of the healthcare providers and/or the systems in place.
Thank you for raising the possibility of domestic abuse and violence. I appreciate you adding that thought to this discussion. I think chronic illness can strain relationships, render some more vulnerable to abuse, or be a reflection of abuse. We need to be cognizant of this. Admission may be a refuge for some. Reminds me of the true meaning of hospital (shelter). This may have worked in the monasteries of 11th century Britain, but today hospitals rarely function well as shelters. However, we can direct such patients to more appropriate places for help where they may find enough safety to make healthier choices.
Thank you so much for your perceptive and helpful comments.
At some point we need to be like other countries and say enough is enough and save these resources wasted on this individual for others who take accountability. It’s a hard line stance and I don’t know who would be judge and jury but 17 times in 2 years is ridiculous and at some point when she comes back again for the 18th time she ought to be denied care.
Admo: this would be a very hard call to make. I am sure the medico-legal ramifications would be considerable. I doubt this girl would survive denial of care. Somehow we need to find a middle ground between care refusal and misuse of healthcare services. Thank you for your thought-provoking comments.
When I saw patients like this I always assumed that the hours spent with hypoglycemia had dulled their decision-making abilities and that they no longer had the decision-making ability to permit self-preservation. Truly a sad situation calling for intervention we rarely have access to.
I generally saw these patients when they were pregnant and their poor control did not help their fetuses mature well. One of the great interventions would be to help them contracept effectively.
I really appreciated this post and have been thinking a lot lately about many of the questions you raised. I’m a current 3rd year medical student on my internal medicine rotation and I was tasked with following a patient just like the one you described in your post: a dozen+ admissions for DKA in the past 2-3 years secondary to medication noncompliance and a preference for marijuana and methamphetamine over insulin. I can only imagine the compassion fatigue physicians who have dealt with patients like this for years must feel. Even after 6 short weeks I’ve caught myself wondering why we as a society have deemed patients like this just as worthy of every medical effort as one who has taken responsibility for their health and merely fallen onto unfortunate circumstances. However, I’m glad I live in such a society. At the core of our medical system is the belief that every life is sacred and worth saving. It’s far from perfect and at times it’s downright infuriating when the few people who can’t seem to take care of themselves make healthcare so expensive and complicated for the rest of us, but I’m confident that it’s better than the alternative. I’m also glad I met my patient when I did because it forced me to think through where I land on some deeply rooted ethical issues facing our medical system today.
After some introspection, I felt I had to do my due diligence and try to figure out why he kept coming back for the same problem. At first he blew me off by giving me excuses that lacked substance and were intentionally vague so I would leave him alone. After a few of these conversations, I decided to try a different approach. I sat with him and told him about the possible complications of uncontrolled diabetes, and that combined with substance abuse, these complications were likely to appear much earlier. I told him that whether he believed me or not, people do actually die from DKA; that even in the hospital, it carries a mortality rate as high as 1%. I then asked him to think about how many times he had already been admitted for DKA and what would happen if he was out somewhere and no one could bring him to the hospital. I wasn’t trying to scare him or come down on him, and I honestly felt bad when he started to tear up, but I think my last point is what finally got him to talk with me honestly about why he wasn’t taking his insulin.
I understand the time I’m afforded to spend talking to patients as a medical student is not a luxury enjoyed by many residents or attendings, but I also think that as physicians (or students or residents), we are quick to type an order for a social work consult or a meeting with a diabetes educator. While these are valuable resources for many patients, there’s something missing when these conversations come from someone other than their doctor. Additionally, the difficult, self-destructive patients that seem hell bent on slowly killing themselves are often the best at sensing when you’ve written them off. If I had to guess, it probably comes from a lifetime of being written off. And while there is not one single, catch-all solution to this problem, I think we can start by being more intentional (and persistent) with our bedside conversations.
I ended up talking with a family member that he lived with and got everyone to agree on a plan for picking up his prescriptions each month. I also brought this information to my attending and worked with her to simplify his insulin regimen based on things he told me about his dietary habits. At the end of the day, I have no idea if anything I did actually made a difference, but I felt good knowing I connected with a patient on a real level, got him to see that I genuinely wanted to help him, and provided him with some concrete solutions going forward.
Hi Kyle –
Sorry for my delay in responding. I just got back from a three week trip to the UK. I really enjoyed reading your thoughtful reflection on your experiences. I was also inspired by the effort you made to have a meaningful conversation with this patient and his family. Even if what you did doesn’t enact long term change, I am certain it would have restored faith in the medical system for this family. And I agree, we can be too quick to refer. Sometimes, we do need to stop and consider for a moment how our words as medical providers may be what is needed. I wish you well with your medical training. Keep up the wonderful insightful work.
I recently helped care for a pregnant woman just as described in the excellent original blog post by Ms. Godfrey. Our team was exhausted trying to develop workable plans with her and I am convinced she had organic brain injury of some sort that prevented her from participating in her own care.
The issues of domestic violence or childhood abuse are important to consider. One of the common aspects of living in chronically violent environments in which one’s self is constantly devalued is the development of “learned helplessness” which can really prevent a person from actively engaging in their own life’s tasks.
These are incredibly difficult situations for everyone. Each situation is more nuanced than we usually know, as witnessed by the persistent and caring medical student, Kyle.
Wonderful post, Alex! This is social pathology writ large & very challenging to deal with. In most cases, the patients appear to me to have low self-esteem, likely the result of poor upbringing, risky behaviors, social stressors and bad decisions. One thing that has helped at my shop: the hospital – finally! – got full time ED case managers that start working on discharge planning right away. I also think patients like this should have **mandatory** post-discharge home visits, 2-3x/week, by home RNs, by court order if necessary. If they refuse to take their meds, with resulting Readmissions, court order for guardianship should be sought by hospital.
Take care (we miss you!)
Thank you for your comments Jim. I think you are correct -many of these patients do have low self esteem. Risk taking, family stress, social stressor and poor decision are all part of this. I envy the presence of your ED case managers. We have no such thing where I work but think this would help a lot. Setting up home RNS to do regular visits might well work. As always the questions is -who would pay for it? Although this has got to be cheaper than recurrent admissions to ICU in so many ways. Preventative medicine not crisis medicine is what we need. Always good to hear from you.
I work in a free community clinic and we see this at a lesser severity all the time. Mostly, we see obesity, drug abuse, under treated HTN, and undertreated DM. Most of the undertreatment consists of either not taking meds or skipping appointments. It is, of course, very frustrating. One of the main factors, I believe, is that many of our patients do not believe their health is their own responsibility. They want a pill to cure their . They are resentful when we push behavioral change. A second factor is denial of the harmful effects of lifestyle choices. “My uncle smoked three packs of cigarettes a day and lived to be 90. Cigarettes don’t cause cancer.” We do what we can but wish for better patient behavior.
Hi John –
I see this shift of responsibility for medical care often and across the board. “I didn’t take my medicine” -it’s not my fault, it’s your fault, his fault, her fault, my pcp’s fault. I think this is also a broader reflection of a tendency of humanity to want to blame others when things go wrong. You owe it to me to take care of me because I am not responsible for this outcome. You’re right -some are resentful. Weight loss and smoking cessation are the two most delicate areas I encounter. Tobacco because they have heard it all before and to mention it is almost considered patronizing and weight loss because it is about body image and has almost become taboo. These conversations you have to frame very carefully. Thank you for your comments. Appreciated by me.
thank you for this post. as a hospitalist, we share your experience. i wonder if getting social work outreach to a patient like this would help in her home. a weekly visit from social work may help identify stressors, help develop a positive relationship with someone who can serve as a constant (but not a doctor), and give positive feedback to her on her triumphs and a kind ear to her sorrows/challenges. having a person she can trust may open the door to her caring more about her health, and identify triggers that set her back.
THE LIFELONG EFFECTS OF ADVERSE CHILDHOOD EXPERIENCES
Vincent J. Felitti, MD
Robert F. Anda, MD, MS
“Ultimately, one sees that many of the more serious public health problems, while
indeed undesirable for society, are also unconsciously attempted solutions to personal problems that are unrecognized because they are lost in time, and further protected by shame, by secrecy, and by social taboos against exploring certain realms of human experience and activity. This represents a public health paradox wherein the public health problem is also a personal solution. This public health paradox underlies many of our most difficult current problems in medicine and public health: in general people are not eager to give up the thing that comes closest to helping, especially at the behest of those who have no idea what has gone on in their lives. As an example, some people continue to smoke in the face of life-threatening pulmonary or cardiovascular disease. Given the reality of some people’s lives, it is important to at least try to understand that not everyone wishes to serve out a full life sentence, and that help is sometimes best given by understanding than by trying to impose superficial advice.”