Policy heavy. Palliative & curative & doing the right thing.

Here is the best thing on closed circuit television this week:

Atul Gawande and Amy Berman at Senate Special Committee on Aging
Start at 31:55 and end at 55:25. If you are as pumped as I am about a Senate hearing on aging I’m sure you don’t mind cueing the thing up yourself.

From Medline, a quick intro to the un-introduced:

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including

  • Pain
  • Shortness of breath
  • Fatigue
  • Constipation
  • Nausea
  • Loss of appetite
  • Problems with sleep

It can also help you deal with the side effects of the medical treatments you’re receiving.

Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.

Our health care system is based on the curative model of care. But you know what? I can’t think of one single patient in my given short tenure in ICUs that was curable. We patch people up. We send them back out into the world to manage their health. And we think maybe the next exacerbation will be the one that ends them. Or maybe we’ll treat the same COPD/heart failure 25 more times before the angels call him home. Maybe 100 more ICU days billed. 100 more days spent being woken up for vitals q.1 around the clock, catheter in the bladder, 6 or more needle sticks a day, uncomfortable bed, bad TV, worse food, and exponentially multiplying chances of acquiring a hospital infection.

When I have a very sick patient coming to the end of a long and painful (and expensive) road I am driven mad by the pain and sometimes harm we cause to extend life, or better stated, delay death. I’m a conscientious objector to placing naso-gastric tubes up the noses and through the pharynx of barely conscious patients on 3 vasopressors with ejection fractions of 10 percent. No tube feeding in the world is going to contribute to that person’s well being, but it will certainly hurt like hell. And we charge for the pleasure.

But hear the good news. We are doing better at starting to consider patient quality of life as part of care. The provision that got cut from the original ACA came back last year with CMS approving a reimbursement for end-of-life discussions. We work within the fee-for-service model. Talking about what you want from your care gets a ICD code and Medicare will pay your doc. This victory though seemingly small, is prized.

Next up for change, and this where Gawande and Berman come in as expert witnesses, is better access to palliative care and its use alongside curative care. These two care models act like enemies when I see an end-stage liver failure patient’s palliative care physician’s orders being DC’ed by the attending, then vice versa, and we go round and round. But they can cooperate. A patient with serious illness (heart failure, COPD, cancer) should not have to make the either/or choice of “fight” with aggressive interventions (multiple surgeries, 2nd and 3rd line chemo) or “give up” with comfort measures only (let’s be sensible and keep antibiotics and say a blood transfusion on the menu). Choosing what your goals are for the remainder of your life, if it’s 3 months or 15 years, and having the right to adjust that choice requires the care of both palliative trained and curative aimed practitioners. Most people want to be comfortable and home in their last bits of time. Pet their dogs and eat food not through a tube and smell flowers (no flowers allowed in the ICU). Very few people want to spend half a million dollars having their body flogged with futile care. But we do have to talk about it before it happens. And as Gawande says, with the same words used time and again by children of the intubated parent who don’t know mom/dad would want, it’s always too early to talk about it until it’s too late.

So proposed changes:

Professionally–better training for doctors and nurses in the provision and goals of palliative care. Before he wrote his book Dr. Gawande didn’t know what it was. Let’s get on that professional organizations, universities, health systems. Nurses IMHO are very progressive when it comes to palliative care. And great educators.

Politically–Some Medicare policy tweaks:

  • Medicare will not reimburse for any curative treatment after a patient elects hospice care. As a patient, that choice is scary. And unnecessary. Provision of both types of care could prevent overly aggressive and expensive care chosen only because the alternative was nothing more than symptom management. Middle ground, y’all.
  • Home care is only reimbursed when a person is terminally home-bound. Where do people go when they aren’t there yet, can’t afford home care, and can’t take care of themselves? The hospital. What’s more expensive and less comfortable than home care? The hospital.
  • If you should need hospice, Medicare requires a minimum 2 night stay in a hospital before giving approval for reimbursement.That seems like a typo, right?

I have no conclusion aside from knowing that progress is being made and being damn proud of it. And I’ve trumpeted my love for Atul Gawande across the land and sea, but standing ovation for Amy Berman. What a nurse. She writes beautifully, too.

Shift work for me, Shocking for you.

My patients are often too sick to speak, much less ask questions about how their care plan is progressing. Yesterday I was lucky to have a patient with family at the bedside. Children that were young and healthy, and based on not subtle comments had the advantage of money and power thus the ability to control everything in their environment. Under normal circumstances. Things had rapidly deteriorated for their mother over the previous 24 hours and frustration with serial specialists painting differing pictures was high. It was very important times for therapeutic communication.*

For caregivers and family with loved ones in the ICU, there are two basic questions:

How did this happen?
To a nurse or a doc the handful of illness we see in the community hospital (pneumonia, sepsis, organ failure, stroke, all of the above) run a well worn path and are nothing to get excited about. To the family of the patient, their loved one was watching baseball two days ago and now we’re telling them to hurry up and sign a paper giving permission to place a central line and intubate. Mom is unrecognizable from the edema in her face and her toes are turning blue. How did it happen so fast?! Family members will show me pictures on their phone insisting that I note the date stamp, “look at her, she was fine!” And she was, until she wasn’t. The turn of events, the speed, the randomness of having some soup go down the wrong pipe into the lungs or reaching for the door handle and noticing you can’t feel your hand. We aren’t able to reconcile it.

As the nurse, validate that this is a catastrophic change. No one is running around screaming STAT! but it’s is as serious as it gets. Permission to be shell shocked. Run through the series of events that got the patient to ICU. Do it again. Answer questions. Do it again. The brain is a non-stick surface when people are experiencing a trauma. ICUs are traumatic.

What next?
This is a toughie, but everyone wants to know. Ask loved ones if they would like your nursing assessment, and if so, share it. People are intelligent until proven otherwise. Your mom is very sick. Here is what we are doing to help her breathing/kidneys/heart/infection. If she gets worse here is what it might look like and the interventions that may be considered. If she gets better here is what it might look like and what the next steps would be in recovery. Tell them what modern medicine can do support their body through acute illness, and where the end of the road is with these interventions. Offer resources. Talk about what the patient was like in health, and what they would want.

If the patient is stable remind family that things can change very quickly but their loved one is in a place where there are professional eyes on them every moment. They are as safe as can be guaranteed. Now might be the time to get sleep since however the ICU stay ends, be it in acute care and recovery or in planning a memorial, laying a body to rest, and grieving, they are going to need strength for the next part.

And you know what? Tell the family what the numbers on the monitor mean. They stare at them for hours not knowing what this alien language is besides scary and important. When you go to silence an alarm like you do twenty million times a day remember to explain why. The lead fell off, the probe is not reading properly. Nurses see the bad wave form and know the data is garbage, but patients and families hear the alarm and think emergency. Communication, comrades.

*Different people are going to want different amounts of information at different times. Nurses assess that first, K? What’s appropriate and when is a soft skill. One pro-tip, and this counts for life as well as nursing: you don’t know how they feel. Don’t say that.

Finding primary care.

*gets on high horse*

I am a nurse with no small amount of expensive health care related education and experience who works in a health system that has its very own heath plan (partnered, of course) and I promise you it just took me 3 solid hours to find a pediatrician for my kid. AND THAT WAS JUST FINDING A NUMBER TO CALL. There was the extra challenge of subscribing to a HDP HSA (high-deductible plan with a health savings account), but that’s where the smart money is in the marketplace.

After I finally set an appointment got off the phone with the grumpy receptionist from the new pediatrician’s office, I immediately called the old pediatrician’s office to request that my kid’s records be put in le grand queue at the fax machine to be sent to the new doc. I was shut down HARD by this grumpy receptionist. I need a release from the new office first. To be signed by me. And the new office requested a release from the old office. To be signed by me. I have a fax machine app on my phone, but I can’t make this happen.

So we will go to the appointment and take the heat and compromise in care of not having his records at the time he is seen. No medical history at all. I will duplicate a small forest’s worth of paper writing out what my shoddy memory contains of his past years of life. It will be skimmed. No one will be happy.

My morning’s nightmare is comprised of two system failures: Who can I find that will take my insurance (bonus question, at what coverage level) and how do I get my medical records to a new provider.

Here is how this could work better:
1.) Stay within the same health system (Kaiser/Geisinger/Sentara/any odd number of university health systems) so that the records are within the same electronically record management program, the billing is the same, and you can assume insurance coverage is the same.

alas, this is not an option (I moved)

2.) Use a larger brand of insurance. More providers accept them. Makes the hunt easier, does nothing for the transfer of medical records.

also not an option (Are you crazy I can’t afford that!)

3.) Pray for the day that health care reckons with the IT future of an electronic medical record that belongs to the patient, not the health system. Throw in a hail Mary for universal coverage. The first I am convinced will happen. The second not really.

As of now if you establish a record of care with a health system you are held there by the inconvenience of moving to an outside provider. It’s a perverse way to get brand loyalty. The middle-weight systems are (wisely, as the motto is grow or die) consolidating independent hospitals and practices faster than you can say “who bought us?” Health systems are trying to grow as big as health insurance networks and become both payer and provider. I get it. The future of a small number of very large health systems and the demise of the independent practitioner is not the saddest thing in the world. Right now, though, things are getting more complex as dozens of regional players merge and partner and insist on keeping their name on the door. It reminds me of having 4 specialists involved in the care of a critical patient and all I want to know is who is the captain of this ship! But that is another issue entirely. Or is it, really.

To bring it right back to where the confusion started, my insurance card has four company logos at the top. And the website is bad. Also, my human resources person is an animated character. Man that took forever. But now I’m just quibbling.

Some of the information wants to be free

CDC queries= my mood boards.

SO lots of facts and figures this week. The gun deaths data used by every pundit, editorial author, and Facebook meme maker (well maybe not) in this country can be found in our national database of mortality statistics compiled by the CDC and available for anyone with internet access to search. I did a therapeutic amount of searching this morning. This is a great tool and resource and one of the public health biggies with open access. It’s government data and PubMed abstracts for me until I decide to drop out of life and get that sweet academic journal access that comes with being a Ph.D candidate. Pffft. Right though: http://wonder.cdc.gov/

Mortality and morbidity statistics are tracked by ICD medical billing codes. Because if there’s two things you can count on it’s death and your survivors being billed for your death.

The design is not good but what were you expecting? That’s how you know it’s authentic. I could spend all week in this.

CDC databases

Narrow your search. Slightly less easy that learning how to properly use MeSH search terminology.

CDC table layout

Results for all codes under “firearm” reporting data from the entire United States in the year 2014. But go have a look for yourself, too. Compare it to cancer. Compare it to car accidents. Dare to look at medical error, too. It’s in your hands. We need help.

CDC databases results

Guns and public health

Firearm deaths are driven principally by availability of firearms. While frequently after these events we link them to mental illness, the evidence is very clear that this is a negligible part of the problem. People with mental illness are much more likely to be victims than perpetrators of firearm violence.

–Sandra Galea, Dean at the School of Public Health at Boston University

Scientific American: Gun researchers say Orlando is a public health emergency