Co-management of pain medication: He was a good partner

Dr. Maren Batalden’s story:

Several months ago, I treated a man in his 40s, a veteran of the war in Afghanistan who had developed both a chronic pain syndrome related to recurrent pancreatitis and a problematic relationship to opioids.  Sometimes the healthcare system had been suspicious of his requests for pain medication. People were nervous, thinking that if they listened to him, and gave him an inch, he’d take a mile, and we would get into a dynamic were we’d never be able to satisfy his needs for narcotics.

I have been thinking a lot about this “co-production” framework for patient care, which invites a more full partnership and more transparency in communication, so I decided to risk putting it all on the table.  “Look, we don’t want you to be in pain.  But it can be hard for us to know whether we are managing your pain or your addiction. You’ll have to help me out with this. You have a high tolerance to narcotics and you have real pain. Let’s figure this out together. What matters most to you?”  Having had a lot of experience in various hospitals, he knew he didn’t want to be on a pump that he could use to dose himself as he knew he might fall asleep and wake up with undermedicated pain; he didn’t want to have to keep ringing the bell to ask the nurse for pain medication that was prescribed as needed or “PRN.”  We put together a plan that involved a combination of long acting and short acting medicines on a regular schedule at doses that he knew would work for him.  

He turned out to be capable of being a very good partner.  The regimen we put together kept him comfortable without over-sedating him.  He did not page the overnight teams with requests for more narcotics. In keeping with parameters I set in our initial conversation, he made no demands for additional narcotics at the time of discharge. I suspect most people want to be good partners with their health professional teams, if we help them understand what we need and want from them and what constraints we are working with.

Often, hospital-based doctors wring their hands behind the scenes in caring for patients like this.  Assuming people with addictions to pain medication will ask for more than they need, doctors feel they have to make decisions by themselves and – not surprisingly – they often don’t get it quite right.  This leads to a lot of back and forth tension about a hospital pain regimen which is frustrating for everyone.

Once you get start looking for ways to improve the quality of the partnership between health professionals and patients, you see it everywhere.

Thanks to Dr. Maren Batalden for her story. Read another of her stories about the co-production of medical care and her article in the British Medical Journal.

Planning hospital discharge with the patient: I wanted to watch him another day

Another story from Dr. Maren Batalden:
A few months ago, I treated an elderly gentleman with cancer who was getting chemo, so his immune system was compromised.  He got a urinary infection and ended up in the ICU [intensive care unit] with sepsis, needing specialized attention to support a very low blood pressure.  He got better surprisingly quickly with antibiotics and fluids.  He came to the regular medical unit late the following afternoon where I became the doctor in charge of his care.  I met him the next morning and he told me he felt fine and was ready to go home.  He’d been quite sick, so I wanted to watch him another day, especially because we didn’t yet have the culture results from the bacteria which caused his infection and we didn’t know which antibiotic would be safe for discharge.

I explained my concerns to him. “When will you have the culture results that describe my bacteria?” he asked.  I said tomorrow.  So he asked, “How about if you give me a dose in the hospital of an IV antibiotic that works for 24 hours, give me a prescription that is your best guess about an antibiotic pill that you THINK will treat my infection, let me go home, and call me tomorrow if we need to change the antibiotics. If we need to change it, we’ll change it then.”  I thought it was a great idea!  He said, “Why should I sit in the hospital waiting for lab results?!  If I feel terrible, I’ll come back.”  He did great!  I called him the next morning; the culture results confirmed that his bacteria was sensitive to the antibiotics I had prescribed. He felt well and continued his recovery without complication at home.

It used to be that when it was time to discharge someone, I figured it was largely my decision to make.  Many patients assume the same.  “You’re the expert, doc.  You tell me.”  But I have come to realize that it’s NOT my decision; it’s a shared decision. I understand what the labs and the physical exam are telling me.  But I don’t know really know how the patient feels compared to his or her usual state; I don’t really know what kinds of supports they have or don’t have at home.  Decisions about whether and when to admit a patient to the hospital and whether or when to discharge have to made together. To my surprise this framework has pretty significantly changed my practice.  I find myself keeping people in the hospital for another day or two, when left to my own devices, I might have discharged them earlier, or vice versa.  The best care, I have come to believe, is always “co-produced.”  

Thanks to Dr. Maren Batalden for her story. Read her article in the British Medical Journal on co-production of medical care.

More than we can imagine: Massachusetts healthcare payment reform

This was the testimony I delivered on June 30 to the hearings on health Care Provider and Payer Cost Trends, conducted by the Massachusetts Division of Health Care Finance and Policy:

I'm Ken Farbstein, a patient advocate with a private practice, and an author of a new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute.

Thank you, Commissioner, for the privilege of learning at these hearings, and being able to testify.

Rev. Hamilton told us that God brings us more than we can imagine. Let's imagine what payment reform will look like in practice. On Tuesday, Amy Slemmer of Health Care for All stressed the importance of transparency, as did yesterday afternoon's panel of speakers. What does that look like? In Pennsylvania, where they've had mandatory reporting of serious reportable events, that reporting has now, they can confidently say, decreased wrong site surgery, according to Mike Cohen, the head of the Institute for Safe Medication Practice. That's pretty good for patients' quality of care. And it reduces costs, because there's no need for physical therapy, prostheses follow-up visits, and so on, to try to make up for the mistake, plus the cost of doing the operation right the second time around.

What else does transparency look like? Harold Miller emphasized yesterday, as did Ray Campbell and others today, about how critical it is to get clear information on price and quality. A one-pager handed to the patient well before any surgery, stating the likelihood that a repeat operation will be needed, the cost to them, the number of similar operations that surgeon has done before, and the alternatives to surgery, would provide vital information. When we brought my dog in for a surgical decision about a lump in one of his front elbows, the veterinarian gave us very clear information about the risks, costs, and alternatives. Her information was much better than the explanations I had received about my own two surgical decisions for my eye, and for my sinuses.

Fully informed, shared decision making will get many people to choose less costly alternatives to surgery, as I did twice. The Cochrane Collaborative documented the cost savings in its recent systematic review of 58 articles in the medical literature.

Impartial patient advocates can discuss end of life decisions that are based purely on preserving dignity and the quality of life. Family members will often prefer hospice care, which is more humane and less costly than "death by ICU." My father had a long gallant struggle with Parkinson's Disease. At the end, he, and we, chose hospice care. That was definitely the right decision for his dignity and quality of his remaining life. It also saved money for the taxpayers.

Yesterday, Harold Miller told us there are 3 ways to reduce costs: prevention, preventing hospitalization, and more efficient hospital care. What do they LOOK like?

Prevention, you know about. Harold Miller also mentioned avoiding hospitalizations. Last night I went to a medical home meeting. There were pediatricians, Nurse Practitioner and another nurse educator, the office manager, 3 parents of kids in the medical practice, and me, with pepperoni pizza, Diet Coke, and champagne - to celebrate a journal article to be published on the successes of the medical home. They showed a homemade video teaching parents about a new alternative to stitches when their kid gets a deep cut. They teased the nurse practitioner who was the star of the video. Their laughter, and their warmth, is a key ingredient of the medical home. That's what home looks like. The video is about DermaBond; imagine a glue stick the doctor will use to seal a deep cut, instead of stitches. Those cuts can be treated in the doctor's office instead of an E.R. visit. No stitches need to be removed in a later visit. These, and many other changes, have enabled this medical home to reduce the E.R. use among their kids over the last four years, by one-third. That's what a medical home looks like.

Third, Harold Miller said costs are reduced with more efficient hospital care. My mother complained of radiating neck pain, so I brought her to our small community hospital's E.R. She was given a telemedicine consult with a doctor at BIDMC in Boston - a 2-way TV hookup that impressed her greatly, and ruled out a stroke promptly. That's what efficient hospital care looks like.

A patient advocate who is fully independent and trusted can help patients and their families make the difficult decisions about how to get their best health care. These images are what payment reform should look like.

My Dad, my dog, and me: Testimony on legislation for patient engagement in decision-making

Chairman Sanchez, You asked that we speak from the heart. My three-minute testimony [June 14 at the Massachusetts Statehouse] is about my Dad, my dog, and me.

I'm Ken Farbstein, past President of Health Care for All’s Consumer Health Quality Council, and the author of Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thank you for this opportunity to support "An Act Promoting Patient Engagement in Health Care Decisions," H.1495/S.1078.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, we'll make better informed choices, and sometimes we'll decide against surgery – which could save money for the whole system.

This week I brought our dog to the vet, asking about a lump on his front left elbow. The surgical consult, and the two later phone discussions, were much more clear, specific, factual, and useful than those two surgical consults I'd had about my own surgical decisions. Our veterinarian provided written materials about the preparation for surgery, follow-up, and costs, none of which the human surgeons had provided.

In a very different realm, near the end of a person's life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. He had seen his own mother's long and heart-breaking struggle with Alzheimers' Disease, and so he had written a living will, when he was age 63, still full of vim and vigor, to clearly lay out his wishes against death-prolonging treatment. That calm forethought was characteristic of the man he was. Hospice care was better for him, and for us, and it must have actually saved money for the taxpayers too.

When you go to buy a car, the dealer has to clearly display the mileage per gallon on a window sticker. When you buy a refrigerator, you can see its Energy Star rating. That gives you critical information that you wouldn't otherwise know at that moment. But surgical operations are arranged with no clear written statement of their effectiveness, likelihood of repeat operations, complication rates, alternatives, or patient satisfaction levels, not to mention their price. A one-page statement should report that information before surgery.

I think many people have the same experiences that my family and I have had, where you are presented with options about health care choices, or perhaps not presented with options but told what to do, and you feel vulnerable and unsure about how to make a decision. Shared decision-making would educate patients and their family members, and get doctors to understand patients' concerns and hopes, so that together we can come to the most appropriate treatment decisions. Many people talk about patient empowerment and patient engagement. Please pass this bill to make that a reality.

Read my book's chapter on Choosing Surgery.