healthcare – in thriver words

When trying to eliminate foods that irritate, sometimes we have to dig deeper. Everything affects everything – allergies, sensitivities, disease process, gut microbiome, diet. Complex systems sometimes mean complex interactions. We want it to be simple, but sometimes it’s not. In order to be a productive member of our healthcare team, we may have to dig a little deeper and meticulously record our response to foods.

Let’s dig a little deeper into histamine intolerance. When making food choices, it could be helpful to know that the level of histamine detected in canned fish has ranged from none detected to 657.05 mg/kg as compared to fresh fish which ranges from none detected to 36.55 mg/kg. That’s a big difference. And it partially explains why you might easily tolerate canned fish in one sitting and experience significant symptoms in another.

It can also be helpful to know that the high-end range for beer is 21.60 mg/kg and for red wine, 55 mg/kg. If you can tolerate gluten, beer (other than specialty GF) may be a better choice than red wine.

And, of course, histamine consumption is cumulative so a meal of sausage (up to 357.7 mg/kg), sauerkraut (up to 10 mg/kg), and beer could leave you feeling miserable. Or maybe you pair sausage with spinach and red wine and end up missing your daughter’’s soccer game. Most of us want to avoid feeling miserable and missing out, right?

And yet it’s difficult to get the kind of specific information we need to make good decisions. And when you can find the information, some amounts will be listed in milligrams (mg). Others are listed in micrograms (mcg). Without moving lots of decimals around, it’s difficult to determine what indicates a high level or how one level compares with another.

In spite of growth in translational research, a grand gulf remains between research findings on diet and readily accessible, easy-to-understand, standardized dissemination of information to the general public. As patients, we’re often expected to follow guidelines that are so general (avoid fermented foods if you’re histamine intolerant) they seem off-base when we have sausage without beer and sauerkraut and still suffer.

No one is happy to follow a specialized diet. When a patient agrees to do so then experiences symptoms anyway, they are less likely to continue the regimen. They may even become less likely to comply with other doctors’ orders.

I can talk all day about the need to dig deeper and even if you’re willing to and have unlimited time, you may find that the healthcare system is not in a place to meet you in the middle. Translational research could be that place, well-care (well-child care) could be that place, holistic medicine could be that place, integrative medicine has some potential, but right now the gaps are great in all of these areas. The crux of the problem is insufficient communication and dissemination of information. Whether this is deliberate or results from low priority, it seems to be culturally pervasive.

I know from personal experience how frustrating that feels. I still believe that digging deeper is worth it. But I understand that the time investment may not be realistic for everyone.

The purpose of this post is to raise awareness that a prescribed dietary regimen may be appropriate. You may be complying with the guidelines you’ve been given. And you may still have symptoms due to incomplete information with which you’ve been provided and/or which is readily available for your condition.

Before you give the plan up as futile, you may want to dig deeper.

What Counts?

When it comes to Patient and Family Centered Care (PFCC), you can make a difference. My family has spent a lot of time in the hospital this past year-more than 160 days since April 2018. That’s a lot of time to observe a lot of things.
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Every hospital is different. Like families, each has its own culture. Departments and even units within a hospital have their own subcultures. In some institutions, the lack of an overall policy results in units developing their own policies.

Communication between units is often lacking so a patient may be transferred from one unit to another within an institution only to experience a confusingly different policy on patient communication tools, changing bed linens, who attends rounds, visitor access, response time to patient calls, etc.

As a patient, you are most likely sick, injured, or weakened in some way. On top of that, you are vulnerable to the expertise, decision making, and implementation of treatment plans at the hand of many, many strangers who you have no chance to vet. That is distressing enough. Adding confusion, inconsistency, and unresponsiveness creates an environment that’s, let’s just say, less than healing.

If you have been a patient and/or family member who has experienced less than acceptable care, you may want to explore your hospital’s policies and participation in Patient and Family Centered Care. There could be an opportunity to provide input that will improve the hospital’s process to benefit patients.

Although Patient and Family Centered Care as a concept has been around for more than 20 years, it has not always been treated as important to healthcare. With participation in Hospital Consumer Assessment of Healthcare Providers and Systems Surveys (also known as Hospital CAHPS®) through Medicare and Medicaid and the public reporting of resulting data, hospitals are increasingly focussed on learning about and improving the patient experience. This has brought additional attention to PFCC.

Patient and Family Centered Care seeks to collaborate with patients and families as partners in care. The four basic tenants of PFCC are:
1. Dignity and Respect
2. Information Sharing
3. Participation
4. Collaboration
Simple enough, right? Of course not when you’re attempting to implement these into a system that has avoided information sharing and often treated patients as subjects rather than people. The good news is that you do not need medical training to relate the patient experience so your voice can be powerful in implementing change.

I sit on a PFCC Hospital Advisory Council. Over the past year, we have helped mold new ICU security policies, changed the language used in scheduling phone scripts and advance directives, given input on opioid risk assessment tools and MyChart content, reviewed food service menus, revised design and use of patient communication boards, and helped implement a hospital-wide linen policy.

In May, council members will begin sitting in each hospital unit to observe and speak to the nurses to determine the obstacles that prevent prompt response to patient calls. The information we gather will be transmitted to our Director of PFCC who will then meet with hospital leadership to determine how best to improve response times.

Our council is a mix of volunteers, hospital staff, and an MD who serves as the Associate Chief Quality Officer for Patient Experience. Some volunteers are retired nurses and medical school professors. Others are business people and community members who are patients or patient family members. Volunteers are required to attend orientation, be familiar with hospital codes, and get a yearly TB test and flu shot (or wear a mask during flu season).

For projects like call response observation, we also receive training for the task. It is our role to be a friendly ear to gather information, not to criticize or make suggestions while in the units. If we have specific concerns, those will be communicated to the Director of PFCC for inclusion in her presentation to leadership. The process is working well enough that current hospital leadership has given PFCC a great deal of authority and priority.

If you feel the patient experience could be improved at your local hospital, you may want to volunteer to assist with, or help the hospital explore implementing, Patient and Family Centered Care. Dedicating your time now can result in a better patient experience for you and/or your family in the future.

Given the amount of time my family is having to spend at the hospital, that seems like a worthwhile investment.

http://www.ipfcc.org/

https://www.medicare.gov/hospitalcompare/data/overview.html

https://www.cms.gov/Medicare/Quality-Initiatives-patient-assessment-instruments/hospitalqualityinits/hospitalhcahps.html

https://medium.com/@cooking2thrive/id-tell-you-but-then-i-d-have-to-b49d9b2d3900

http://www.cooking2thrive.com/blog/heres-an-idea-for-an-app/