Please, let us connect to our fellow patients!

Everyone concerned with improving health care should take a look at this article in the New York Times by Dr. David Stern. Its written by a cancer patient relating two experiences in what is obviously a high status hospital.

He wonders if he could have helped, or been helped by, his roommates, in both of whih cases had more advanced diagnosis than he. He did not even know their names, and heard their emotional and physical paid and felt unable to do anything.  In the econd case:

As with my last hospital roommate, I never saw this man’s face and we never spoke, but I feel immeasurably close to him, as though in some ways I know him better than my dearest friends. He heard me gasping for air through the night and yelping in pain as the chest tube got pulled, and I heard him trying to be brave for his family, reassuring them that they would go forward with whatever came next as best they could. I heard him speak in a reassuring voice to his children, only to hang up and weep loudly into the night until passing into a sleep from pure exhaustion.

Listening to him was like a kind of sonar, an echo bouncing back to me from my own future path, hinting at what’s to come.

When I was getting ready for discharge, I had the urge to pull the curtain and embrace him as he told me the secrets of what to expect next. I would ask how had he navigated the path from here to there. I would lay down the weight of uncertainty that surrounds my life and ask: What should I do now? How I can live with only a vague sense of dread of what’s to come as my guide?

But he could not have given me answers, just as no one could have articulated what lay ahead for me at other junctures, such as when I started medical school, became a husband and a father or at the time of my diagnosis. The next steps must be discovered in the journey itself.

Actually, maybe, no almost, certainly that patient could have given you something relevant and helpful, if not the final answer.  And, it would have helped my roommate to have helped me.  I certainly find that waiting room chats can be incredibly helpful to all of us.

I have to same, more importantly, that this article inspired in me no fear, notwithstanding a progressing terminal cancer.  This is simply because I have absolute faith that my doctors and other providers, my hospital, my palliate care program, and ultimately my hospice:

  • will let me make the connections I need to make,
  • keep me out of pain, unless I choose otherwise,
  • help me make human connections with those around me,
  • and will listen seriously to my suggestions for how to improve my experience and the system as a whole.

And, above all, I am certain, at least if I had asked, they would have obtained any HIPPA waiver they felt necessary, and introduced me and my roommate.  (Both my hospitalizations were in single rooms, as a general infection control measure.)

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Biometric Measures of Pain and Self Reporting of Side Effects

A few days ago, I blogged about the dificulty of self-reporting side effects.  The AP has just run a story on how it may be becoming possible to measure pain bio-metrically.

The National Institutes of Health is pushing for development of what its director, Dr. Francis Collins, has called a “pain-o-meter.” Spurred by the opioid crisis , the goal isn’t just to signal how much pain someone’s in. It’s also to determine what kind it is and what drug might be the most effective.

“We’re not creating a lie detector for pain,” stressed David Thomas of NIH’s National Institute on Drug Abuse, who oversees the research. “We do not want to lose the patient voice.”

Around the country, NIH-funded scientists have begun studies of brain scans, pupil reactions and other possible markers of pain in hopes of finally “seeing” the ouch so they can better treat it. It’s early-stage research, and it’s not clear how soon any of the attempts might pan out.

“There won’t be a single signature of pain,” Thomas predicted. “My vision is that someday we’ll pull these different metrics together for something of a fingerprint of pain.”

Obviously, there is still huge amounts to be leaned not only about the measures, but critically their relationship to how we as patients actually experience them.  I was very encouraged to see the quote from David Thomas “We’re not creating a lie detector for pain.  We do not want to lose the patient voice.

Obviously, this will require full involvement from patients in the research design, as well as making sure that those who are trained to use the new measures are fully informed of the relationship of patient experience to the numbers.  Its not hard getting researchers to understand, but less clear that harried caregivers will not be attracted to shortcuts.  In fact, quite apart from research into the reliability of the numbers, we will need research into what happens in the field –“first do no harm.”  I see this new ata ass potentially strengthening the patient partnerhsip, not weakening.

As some who has sat as a patient voice on numerous health care working groups, I have complete trust in the intent of the professional participants, but I have also seen how powerful that unified professional voice can be, unless we understand the full dynamics.

I hope that my caution does not undercut what I see as very good news here.

More on Identifying Side Effects

Yesterday, I blogged about how hard it can be for patients with co-morbidities to accurately report on side effects.Imuch appreciate the suggestions and ideas I got in response.

Here are some more ways to think about solving this problem:

Keeping a journal over time

Developing a neurological scan that shows nerve responses in real time

Developing brain scans and algorithms to identify side effect-related brain activity

Using medical staff with co-morbidities to do the side effects interviews

Asking families what patterns they are seeing

Including sensitivity to these issues in medical training and rounding

More suggestions and comments always welcome

 

On Identifying Side Effects for Patients with Co-Morbidities

As a patient with lots going wrong, I have found that when I try to answer a question about side effects from a new drug, I often get confused.  I think the reason is I already have so many of the side effects that appear on every drug list, that is it hard to calibrate an increase in side effects.

I suspect that treatment decisions have therefore been made for me based on what are really guesses on my part.  Its good to have my self-reporting taken seriously, but maybe I need some training on listening to my body better.

Remember that most providers are healthy, so that are not used to getting the constant alert messages that us perpetual patients are.  They have not developed the suppression and filtering tools that we have.

So, the question is what can we do?

Maybe patients should be trained in mindfulness on this.

Maybe we should test whether patients under hypnosis report more accurately on side effects.

Maybe providers should talk about this, and develop training protocols.

Maybe our research protocols should be improved to be sensitive to these issues.

Obviously, the last think I want is for providers to ignore patients, but true partnering requires careful listening.  Thanks to all those who listen to me with care and respect.

 

The Gut Feeling, Medical Intervention, and Partnering

A fascinating article in the New York Times about nurses’
“gut feelings,”makes the argument that:

Every nurse likely knows the feeling. The patient’s vital signs are just a little off, she seems not quite herself, her breathing is slightly more labored. But on paper she looks stable, so it’s hard to get a doctor to listen, much less act.

In such situations nurses invoke “gut feelings,” but they actually aren’t feelings at all — they are agglomerations of observations and experiences that over time have turned into finely tuned clinical judgment. The idea is that working at the bedside has honed nurses’ perceptions to be especially alert to brewing trouble.

The article goes on to describe software that aggregates data to help predict problems and support the intuitions described above:

Together the Rothman brothers came up with the Rothman Index, a commercial product that uses data from standard electronic health records — including lab values, vital signs, cardiac rhythms and key aspects of nursing assessments — to monitor hospital patients. It tracks their status as a graph that falls into a blue, yellow or red zone, based on whether they are at low, medium or high risk of an acute event.

While this sounds like a great idea, lets not also lose touch with the value of the intuition — and extend the exploration and valuing to family members and indeed the patient themselves.  I suspect that we could “train” patients and families to be much more mindful about patient monitoring, including how to trust their instincts and how to communicate their feelings to the medical personal.  This, of course, should be accompanied by training of medical staff on how to take the most advantage of, and how to solicit such communications.  It is not hard to construct model ways of doing so.

I suspect that just like the nurse who wrote the article felt badly about a situation in which they had failed to communicate their instincts about a patients decline, many family members worry for the rest of their lives that if they had shared their own intuitions, there might have been a better outcome.  (Actually, that’s not a hard question to survey — self-reporting would be meaningful in itself.)

 

 

 

Advance Directives Look Completely Different to Patients and Treatment Actors – So Partner in the Design

I have come to realize that patients and actual treatment providers may be thinking very differently about advance directives, and that therefore it is particularly critical that these documents — or rather the templates that are used, be designed in close partnership. between patients and providers

For the providers, the question they face is usually very treatment specific — typically something like: “do I turn off this machine now?”

For patients, the issue presents very differently focused on particular anticipated circumstances: “what do I want done when I can not eat?”

So, look, for example,  at this question from the Maryland MOLST document.

molst

While some of us may think this second way, I think most of us come at it rather from the direction of, “what do I do when then the pain becomes too much?”, or “how do I guarantee that I am not left unable to say that enough is enough?”

I totally understand that given that the role of the MOLST is to ensure that specific decisions are made in accordance with the patient wishes, that often those decisions are made under time and emotional pressure by first responders with limited training, such treatment specific instructions are needed.  Otherwise treatment will tend to continue, regardless of what the patient wants.

But, if you have ever tried filling out the MOLST, or I suspect equivalent documents in other states, you will find that you are constantly fighting its categories, and wanting to add more and more detail, when allowed.

Given these differences in perspective between patients and providers, let me suggest that we need software that walks a patient though questions, and based on those answers, generates the directive.

However, the questions must be structured the way the patient thinks, laying out circumstances, and offering choices.  The software then restructures those into a set of formal directions that are treatment specific, like in the MOLST. Obviously then the patient reads and signs thee derived directives document.

I hope it is obvious that such software needs, and accompanying materials, need to be developed in close partnership between providers and patients.

 

 

 

 

Metrics for Measuring “Chemo Brain” Impacts

There is lots of talk about so-called “chemo brain.”  However that talk seems somewhat vague and undisciplined on all sides.

I suspect that part of the reason may be relative lack of metrics, at least other than self-reported ones.

I propose that in today’s social media world, we are all constantly generating data about our level of engagement with the world, and that that data can easily be collected and built into research and treatment.

I have been on Revlimid, and felt in a fog.  The fog seems to be cleared four days or so after ending the 21 day “on” cycle.  I am unlikely to restart, and am exploring a different srategy.

As you know, my main outreach to the world s by blogging, so I went and looked at my recent blogging history.  It seems that I almost completely stopped blogging during the Revlimid time.  It seems that this is a longer gap than any before (it was over the holidays.)  This metric confirms what I felt.  (Special thanks to the nurse, who when I reported what I was feeling, said something like: “I hear that a lot about Revlimid.”)

Now for many, the key indicator may be number of emails sent, number of Facebook postings, or of twitter messages, or of indeed any social media platform.  It is easy to imagine tools to collect and transmit that data.  Indeed, that data might inform conversations between care team and patient about impacts.  (I know that once patients start to think about this data, it might impact our productivity, but it is still better data than nothing.)

Ideas?  Reactions?