Post-Hospital Syndrome is Real

February 17, 2019

Post-Hospital Syndrome (PHS) is a period of time after discharge from the hospital where patients enhanced vulnerability to disease as well as an elevated risk for adverse events, including hospital readmission, generalized dysfunction with new cognitive impairment, mobility disability, or functional decline, and even death.[1],[2]

In 2013, I came across a perspective article by Dr. Harlan Krumholz in the New England Journal of Medicine entitled: Post-Hospital Syndrome – An Acquired, Transient Condition of Generalized Risk.[3] It was the first time over years of hospitalizations that I felt that someone had finally hit on part of the hospital experience no one talked about – going home. It finally put a name to something I’ve experienced but could never put a name to – something I wanted to explain to my doctors (both inpatient and out) to help improve my care.

I wanted them to understand that while hospital stays are coded as “events” – as singular points in time with a beginning and end, distinguished “episodes” unique from ongoing care, they aren’t singular events for any patient. Our story starts long before and continues long after. And that part in between, the hospital stay itself, has long lasting effects. Post-Hospital Syndrome is one of those effects.

But my clinicians and those I shared the article with haven’t heard me yet. They haven’t read and heeded the insight of calling for doctors to focus not only on the issues that led to the patient to the hospital but to the “allostatic and physiological stress that patients experience.”[4] In other words, the hospital puts so much stress on our bodies that it makes us vulnerable to getting sick even when we’ve been deemed healthy enough to go home. That stress must be a factor in the care we receive during and after hospitalization.

Allostatic stress is essentially a fancy way of saying systems overload. It’s your body being in a constant state of stress that taxes your neural and endocrine responses. After awhile, this kind of stress eats away at you. It compromises other systems – like your immune system – because your body just cannot keep up.

What stressors are we talking about? Any patient can tell you that lack of sleep is one of the biggest factors in disrupting your health. As the Krumholz wrote in 2013:

This disruption can have debilitating behavioral and physiological effects: sleep deprivation adversely affects metabolism, cognitive performance, physical functioning and coordination, immune function, coagulation cascade, and cardiac risk. Disruptions of the sleep–wake cycle may cause perturbations in circadian rhythms and may have adverse effects even independently of sleep deprivation and abnormalities. These disturbances in hospitalized patients may confer jet-lag–type disabilities. Studies of people with jet lag have revealed increased incidence of dysphoric mood, diminished physical performance, cognitive impairment, and gastrointestinal disturbances. [5]

Finally in the last year or so, more studies have been published and talked about in the media, imploring doctors and hospitals to let patients sleep. This is something we, as patients, have been telling everyone for a very long time. And perhaps they are starting to listen.

But PHS isn’t caused just by lack of sleep. Other issues he identified include:

  • Malnutrition with poor quality hospital food and/or lack of appetite;
  • Information overload with new diagnostic information to comprehend and process, not to mention the tests and procedures that abound on unpredictable schedules;
  • Chaos of people surrounding the patient including new people to meet (doctors, nurses, staff, etc.) and family and friends who also need to be managed or brought in to take part in care;
  • Inadequate pain control;
  • Loss of strength from being in bed all day.

As a result, patients can go home feeling worse in many ways and yet most folks think we should be feeling better, able to rebound and get back to work/home life/social engagement. When in fact, what we need is more sleep, food, and the ability to take some time to process. At discharge we were given instructions to follow up with a doctor, maybe some wound care or basic info on the medical condition that brought us there, and what medications they gave us. But what we really need to recover, particularly from PHS, isn’t on there because no one is acknowledging it exists or how harmful it is.

Krumholz suggests ways to minimize future PHS while patients are in the hospitals, advising doctors:

We should more assertively apply interventions aimed at reducing disruptions in sleep, minimizing pain and stress, promoting good nutrition and addressing nutritional deficiencies, optimizing the use of sedatives, promoting practices that reduce the risk of delirium and confusion, emphasizing physical activity and strength maintenance or improvement, and enhancing cognitive and physical function. [6]

Still, most have ignored this advice….

Five years after that initial article was published, I was excited to see Dr. Krumholz’s work come to fruition in an article, authored by Deena Goldwater, et. al. in the Society of Hospital Medicine. No longer was this just a Perspective, but actual objective evidence that all his inclinations about PHS are spot on. In their work, the authors found:

Resulting from extended exposure to stress, allostatic overload is a maladaptive state driven by overuse and dysregulation of the hypothalamic-pituitary-adrenal axis and the autonomic nervous system that ultimately generates pathophysiologic consequences to multiple organ systems. Markers of allostatic overload, including elevated levels of cortisol, catecholamines, and inflammatory markers, have been associated with adverse outcomes after hospital discharge. [7]

In other words, Post-Hospital Syndrome is real. It is a physiological burden placed on patients who are already physically and mentally compromised because of the health issues they are facing (note: when I say mentally compromised, I don’t necessarily mean mental illness, I mean the literal demand that physical stressors put on our mental functioning).[8]

Dr. Goldwater’s team cite statistics that “More than 1 in 3 patients discharged from the hospital require acute care in the month after hospital discharge, and more than 1 in 6 require readmission, with readmission diagnoses frequently differing from those of the preceding hospitalization.” [9] And the team offers a great table that lists out many of the stressors patients face.

As well as research priorities to pursue in order to mitigate some of these stressors:

I feel validated seeing these tables. They sum up the stress that healthy folks don’t understand about hospital stays. In a straightforward manner, they explain what patients have been saying all along. And they may even shed light for people as to why many of us are reticent to seek help in the first place, especially at hospitals – that it is a sign that our issues are very bad if we’re showing up at all, knowing this is what we will face.

But the authors here still miss a lot. They miss the issues we face in the hospital – like losing our dignity and autonomy. And they miss the issues we face out of the hospital – the lack of care and support services we need to truly recover.

These articles on PHS discuss lack of privacy but lack of privacy comes with stripping away dignity. A person is not a person anymore. We are illnesses and injuries. We are medication schedules and arm bands that have to be scanned in. We are literally stripped and put into gowns that expose our bare, vulnerable bodies – forced to talk about things that may be unconscionably painful for us to discuss. Our bodies aren’t ours anymore.

PHS is more than the overwhelming nature of information and chaos of people coming into our rooms but the lack of trauma informed care. Medicine is brutal even when it’s meant to be careful and kind.[10] An IV placed, a tube shoved down your throat – those are assaults on the body. Even the most minimal of interventions – say a prick of a finger for a blood sugar – is damage done to body and mind. Too often, patients are left with a form of PTSD we now colloquially call mPTSD, or medicalPTSD. It is the psychological impact from the physiologic and mentally damaging effects of being a patient. Trauma informed care would benefit every patient, but hospitals don’t practice it, few clinicians or staff actually even know the term. A hospital is a busy place, so TIC is hard to practice – interventions are rushed, the whole person isn’t seen. And when you are a trauma survivor (whether of childhood abuse, domestic/interpersonal violence, or from past medical encounters), you end up having to submit. Submit and it won’t hurt as much. Yet in so doing, we lose more of ourselves.

PHS is recovering our dignity too. After care instructions don’t list out how to reclaim our personhood.

And while we are trying to come up for air from the bedlam of hospitalization, PHS discussions thus far miss the ways it can be mitigated at home, for there is never enough after care. There’s minimal discussion on where a person lives and who they live with. Will they have help getting into bed? Will they be able to cook food? Do they even have food at home? Can they afford food? How can malnutrition be counteracted if it wasn’t adequately addressed in the hospital and it can’t be adequately addressed at home either. Doctors can’t write prescriptions for grocery delivery and food preparation. For those of us disabled patients, us “frequent flyers” often mocked by medicine and counted as burdens to economies, we’re already stretching our food stamp dollars as best we can. We don’t have extras for deliveries (that usually don’t take food stamps anyway). The stress of getting the basic necessities to survive is PHS too.

Who is driving these patients to their next appointments and further testing? Do they have friends or family that can take time off work and who have the energy to drive them? Does the patient have a car or the gas to get there? Can anyone spare Lyft credits, while a patient will have to find a way down the stairs of their apartment and trust a complete stranger to deliver them with care to their doctor and back.  PHS is also follow up care – scheduling, getting there, getting back.

Who is there to help the patient in and out of a bath? And does the patient want the further indignities of intrusive helpers? For me, I might lie that I can stand in a shower because I want my privacy back. The fight for independence is also PHS.

What about sleep? The new medications and new diagnoses may mean sleep continues to be disjointed at home. A newly diagnosed type 1 diabetic is now terrified to sleep for fear they’ll go into a coma overnight. T1D is like bringing a new baby home, but they don’t tell you that. They don’t tell you that it will overtake your life and you will be on its schedule, not your own at all times. It will cry “low blood sugar!” and you will have to respond immediately. This stressor on our allostatic loads and mental capacity is PHS too.

Then there are those sent home on pain meds sleeping through the day, as they try to manage pain, circadian rhythms be damned, mobility too excruciating but for the bare minimum. True pain management never fully acquired in the hospital and lack of restorative, consistent sleep to ever make it back out of this black hole of agony, we are left not functioning. This is PHS too.

Dr. Victor Montori, in his book Why We Revolt, discusses aspects of PHS without labeling it as such. Writing about the work of being a patient, he says, “It is not simply the time patients spend (and how they wish they could have spent it elsewhere) but the emotional work, the frustrating hurt involved in accomplishing each task, made often so maddeningly difficult for no apparent reason.”[11] The new burdens imposed on a patient – both while inside and once released – burdens that are emotional and practical further contribute to PHS.

Montori goes on to write, “Our protocols say nothing about how to help with the care that takes place at the kitchen table, the bathroom, the nightstand, the workplace, the insurance help line, the clinic phone bank, the website, the pharmacy queue, the bust stop, or the clinic hallway.” And that’s it, in a nutshell. Already our entire lives have been disrupted, interrupted, and even stopped as we face inpatient hospital stays. Already the allostatic load our bodies must endure is exponentially burdened while in the hospital only to be further strained upon discharge – leaving us in a post-hospital state of vulnerability to new illness and injury including hospital readmission, generalized dysfunction with new cognitive impairment, mobility disability, or functional decline, and even death. [12],[13]

How then can we really minimize PHS? Patients (and family, friends, and caregivers who often also experience some forms of PHS) already know, we’ve told clinicians and policies makers before. We’ve told you it needs to be holistic – starting in the hospital and continuing past discharge. To avoid PHS:

  • Practice Trauma Informed Care – many patients who have a history of trauma may have no way to tell you of this history, how deep it goes or how it affects them. Being trauma-informed (accepting disclosures, and putting principles to practice) will help on many levels.
  • Let us sleep – get rid of the unnecessary 4am blood draws, the unnecessary beeps, coordinate coming into a patient room so they don’t have someone showing up every 5-60 minutes, etc.
  • Acknowledge and manage our pain – this will allow us to rest and heal faster.
  • Use minimally invasive procedures – invasive procedures, especially multiple invasive procedures can induce mPTSD (along with un-managed pain and unkind care).
  • Let us record our discussions or have pen and paper on hand so patients can write notes, friends/family can write notes, or you can write notes to leave with us. The whiteboards listing our nurses names have been very helpful, but we need places to keep information for when we are more cognitively able to process it. The information overload is too much even for those of us well versed in the system and medicine, we need ways to process that information and the printouts aren’t helping.
  • Develop better food options (which means also getting rid of the “diabetic diet” and learning about celiac disease and other food allergies so as not to expose patients to further illness);
  • Help us move but don’t force us to move – Letting us walk down hallways every once in awhile can make a great deal of difference, we know. (I’ve known folks on in-home detention for criminal acts that got outside their house more than I did my hospital room.) But forcing PT and OT can do more damage, especially without pain management.
  • Think about services we’ll need after the hospital like food, transportation, assistance with household chores and activities of daily living, etc. This is primarily on insurance and policy makers – keep pressuring them to offer services like this (with Medicare/Medicaid especially, the investment can be worth the savings in keeping folks out of a hospital). Caregivers and friends get burnt out trying to fill these roles. We all need more help.
  • Attend to emotional needs, not just physical needs. Recognize that tears, panicking, depression, anxiety, and even some anger may be signs of mPTSD or a body trying to process all a patient just went through. Hold space for those emotions, validate them & allow them to be expressed.
  • Do anything and everything in your power to help us maintain and regain our autonomy and dignity.

Post-Hospital Syndrome hurts.
I know because I’m dealing with it right now.

__________________________________________________________

[1] Goldwater, D.S., Dharmarajan, K., McEwen, B.S., Krumholz H.M., (2018). Is Posthospital Syndrome a Result of Hospitalization-Induced Allostatic Overload?. J Hosp Med. doi: 10.12788/jhm.2986

[2] Krumholz, H.M. (2013). Post-Hospital Syndrome – An Acquired, Transient Condition of Generalized Risk. N Engl J Med. doi: 10.1056/NEJMp1212324

[3] Id.

[4] Id.

[5] Id.

[6] Id.

[7] Supra note 1.

[8] Id.

[9] Id.

[10] “Careful and kind care” is a phrase borrowed from Montori, V. M. (2017). Why we revolt: A patient revolution for careful and kind care. Rochester, MN: The Patient Revolution.

[11] Montori, V. M. (2017). Why we revolt: A patient revolution for careful and kind care. Rochester, MN: The Patient Revolution. p51

[12] Supra note 1.

[13] Supra note 2.

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HIPAA Request for Information Submitted Comments

February 11, 2019

Not knowing whether I’d be out of the hospital in time to submit my comments, I posted an early draft this weekend. I had the opportunity to update and amend that draft and submitted my final comments just now at regulations.gov. The link below will take you to a .pdf of the comments submitted.

Link: Erin Gilmer Response to HIPAA RFI, February 2019

For those who still wish to comment, the commenting period is open until February 12 2019, at 11:59 PM ET. Submissions are accepted here.

Your comments do NOT have to be as detailed as mine. You can write general feedback on any of the areas of the RFI or answer any of the questions within to the extent you wish. I highly recommend you do submit comments, particularly on Section 2. As a reminder, I’ve written a recap of all the sections and what they’re all about here. And if you need a few tips on how to submit a comment, I’ve written a post to help you which can be found here.

I will be sure to update you when hear from HHS about the submissions received and any rules the promulgate as a result.

Thank you for all who have engaged in this process – whether you took the time simply to learn about HIPAA or were able to submit comments yourself. Your voices matter and will make a big difference in the lives of patients everywhere.


HIPAA Request for Information – My submission

February 8, 2019

Below you’ll find my draft comments to the OCR’s Request for Information. I don’t know if I’ll be able to revise my comments before Tuesday as I’m still in the hospital but wanted to share in case anyone wanted to read them before submitting their own comments. This draft has not been edited and likely contains many grammatical errors and areas needing clarification. There are issues I’d love to add or flesh out more, but this may be all I’m able to submit. (Note: people submitting comments do NOT need to be this detailed or answer all portions of the RFI. If you want to comment generally or only answer select questions, your input is valuable.)

Erin Gilmer DRAFT response to the Federal Request for Information on Modifying HIPAA Rules To Improve Coordinated Care

Comments are due on Tuesday, February 12, 2019.

If you aren’t sure how to comment, this post can walk you through it.

For background on the HIPAA RFI, see my post summarizing the issues here.

If you’d like to comment, you can do so here. And the original questions can be found here.


Trauma and Psych Wards

January 29, 2019

[CN: Suicide, Psych Wards, Self Harm]

Tomorrow will be the 16th anniversary of my first stay in a psych ward. I was placed on a 72-hour hold after a suicide attempt. The second semester of my second year in college and while I’d attempted and had suicidal ideation before, this was my first time actually admitted. I’ve been in 6 psych wards total and I’ve written a bit about my experiences in the past.

Today, though, I want to write about how psych wards create trauma and what truly terrible places they are when you are really struggling.

Marsha Linehan, who created Dialectic Behavioral Therapy (DBT), said it best when she said:

“You know there isn’t a single shred of evidence that any hospitalizations ever kept anybody alive five extra minutes.”[1]

Read the rest of this entry »


How to Comment on the HIPAA Request for Information – A Guide

January 27, 2019

The agency that oversees HIPAA (the Health Information Portability and Accountability Act) is asking for feedback on possible changes to the law through a Request for Information (RFI). The agency (OCR – Office for Civil Rights) believes that many of the provisions in the law are “regulatory burdens.” They also want to open up the ability to share your private protected health information (PHI). They say they want to do this to help coordinate care better, but it means giving up many patient rights.

To ensure that patient rights to their records and privacy of their information, it is incredibly important for patients to submit their comments to the RFI. Without patient input, other entities will likely convince the OCR to change HIPAA laws in ways that might hurt patients.

HIPAA may seem intense and hard to understand, but you don’t have to understand every aspect of the law to make a comment.

This guide will take you through the process of writing and submitting your feedback. If you have any questions, you can leave them as a comment on this post, email me at healthasahumanright@gmail.com or ping me on twitter @GilmerHealthLaw. And if you send me the text of your comment, I will be glad to read it over before you submit it.

The deadline for comments is only a few weeks away – February 12, 2019.

Read the rest of this entry »


Possible Changes to HIPAA – What’s this RFI All About (A Summary)

January 14, 2019

Over the past month, I’ve been tweeting and blogging about possible HIPAA changes that may be in store after the OCR (Office for Civil Rights – HIPAA enforcers) published a Request for Information (RFI). With the deadline for comments about a month away (February 12, 2019), I thought I’d distill the information into a bit of a summary – a sort of tl;dr version of my last 5 posts.

I’d encourage anyone interested in your healthcare privacy rights to read over the information here. I’ve suggested questions at the end of each section for you to consider and will follow up in my next post with how you can submit comments on the RFI.

What is this RFI?

This is NOT a chance to comment on everything we don’t like about HIPAA. While we all know there are many places where HIPAA can be improved, this RFI is about 5 specific areas of HIPAA. The OCR has proposed very specific questions in each area for people to answer and those are what they want feedback on (those questions can be found here).

The 5 areas include:

  • Sharing information between doctors
  • Sharing substance use and mental health information with friends and family
  • Accounting of Disclosures
  • Notice of Privacy Practices
  • HIPAA “burdens” that prevent policy goals around Value-Based Care

There’s a lot here and you certainly don’t have to address every part of the RFI. You can pick and choose what is most important to you.

The rules they are interested in are primarily part of the HIPAA Privacy Rule found at 45 CFR 164, Subpart E (for the nerds who would like to catch up on the current language). In each of my previous posts I’ve taken these areas one by one and answered the questions in detail. I’ve given background on why they matter, examples of how they work now, and concerns as to why and how potential changes will harm patients.

To be clear: Changes suggested in each part will hurt patients.

Read the rest of this entry »


Possible HIPAA Changes Are Coming – HIPAA Wrongly Seen as a “Regulatory Burden” (RFI Part 5)

January 10, 2019

This post will address Part 5 the Office for Civil Rights’ (OCR) request for information (RFI) on possible changes to the Health Information Portability and Accountability Act (HIPAA). Part 5 addresses questions the OCR has about HIPAA’s “regulatory burdens.” 

For background:

  • The RFI can be found here.
  • My introduction to the RFI as well as an analysis of the 1st part (on sharing information between providers) can be found here.
  • My analysis of the 2nd part (on loosening privacy standards for substance use and mental health information) can be found here.
  • Discussion on the 3rd part (changes to accounting of disclosures) can be found here.
  • The analysis on the 4th part (on how patients get Notice of Privacy Practices) can be found here.

The 5th section of the RFI is short but sums up the OCR’s viewpoints on HIPAA, and truly it’s aims here in soliciting feedback – essentially that HIPAA regulations are a “burden.”

The title of the press release for the RFI underscores this:

HHS seeks public input on improving care coordination and reducing the regulatory burdens of the HIPAA Rules (emphasis added)

To be clear, HIPAA regulations are NOT a burden. They give patients rights and protect patients health information. But clearly the OCR and many special interests believe it is.

Read the rest of this entry »


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