Use of the Shared Care Plan over time: One patient's experience.

            Last August, 2002, I was referred  a delightful patient with heart failure. Betty (her real name by her permission) is a bright motivated and alert person of now 89 years' wisdom.  She had had two hospital admissions in August and her cardiologist felt she was a perfect candidate for the Pursuing Perfection project. She had recently moved to Bellingham to be nearer her family since she had begun to have more serious medical problems. She was already active on the Internet and continued to contact old friends through email. ( "I asked the young man who was installing my modem:  "If I'm learning to email at age 88, what do you think you'll be learning at that age?" He said, wonderingly, "I cannot imagine!")

            So we began our relationship and developed the Shared Care Plan together.  She was delighted to have a single medication list.  She had actually been using her most recent discharge medications list which had all her cardiac meds but did not include all the other medications she'd been prescribed from her PCP and GI specialists. I coordinated her appointment with her new PCP at the Center for Senior Health. Dr. M. was more than pleased to interview her the first day and already have a complete and verified meds list on the SCP.  Betty became more knowledgeable about the use of diuretics, why she was logging her weight, and who to call when she had a problem. She repeatedly said how wonderful it was that she could call me to clarify something when she needed to. 

            She stabilized and reported to me happily that she was going to Arizona for the winter months but would keep in touch. She proudly presented her SCP to her cardiologist and gastroenterologist in Arizona. They too were impressed and pleased to have all her pertinent information in a single place. Betty sent occasional emails and was having a wonderful time. Regrettably, in January 2003, while still in Arizona, things took a turn for the worse.  She suffered a severe GI bleed and was hospitalized for several days.  When she returned home, she was shocked to find her weight well above the target of 112. She immediately took some Lasix and contacted her cardiologist since she knew she was at high risk for developing shortness of breath from her CHF. She also emailed me in Bellingham to let me know what had happened and to ask advice for how she should proceed. I cautioned her to not be impatient since she was so fatigued after that episode. I warned her about the potential for orthostatic hypotension and encouraged her to not overdo too soon. Just a few days later I received another email from her daughter. Betty had fallen and fractured her hip. She had pins placed and was able to fly back to Bellingham several days later.

            Once back, she contacted me again and we quickly updated her SCP.  Her local physicians have continued to use it as have her daughters.

            The SCP was a valuable tool first for Betty. She relied on it for accurate information. She always took her copy with her whenever she had a medical appointment.

It was equally valuable for her physicians while she was in Arizona as well as when she is at home in Bellingham. Her original PCP in Alaska actually has gone online and could see what has progressed as well.

            The SCP is a wonderful tool that helps the patient, her family, and her clinical providers all to understand what is happening in the moment. Use of it promotes improved communication about what is important to the patient personally and relieves some of the burden of having to repeat to multiple individuals her history and what meds she is on and why. Improved communication leads to greater safety for the patient and a higher level of satisfaction for all concerned.

1:30:56 PM     comment []   Google It!  

This last week I have had several examples of how powerful the relationship with a patient is to bridge gaps and sustain positive changes in self-care.

One patient, Marie (not her real name), was adamant she would not start insulin. In fact, she told her doctor that she was just going to stop seeing any doctors because her diabetes was out of control and all they wanted to do was start insulin! She was referred to me in the provider's last desperate attempt to help the woman understand all the implications of her choice. That was three months ago. We have visited for an hour two or three times a month. Every visit we discussed some aspect of diabetes and she came to talk freely about her fears. She associates "the needle" with drug abuse and pain. Even testing her glucose hurt her fingers. (I later discovered she'd been using the same Lancet all the time which of course was by now dull, and very painful, not to mention potentially infectious!) She was sure giving her own injections would also be very painful. She has had a difficult and lonely life and has been abandoned repeatedly. She admits to terrible depression. She does not care about herself and feels utterly worthless. She resents having to "give up sugars" -- the last pleasurable thing left to her since she no longer uses drugs or alcohol.

As her Clinical Care Specialist, I accepted her where she was. I gently provided her the facts. We walked whenever weather would permit. We walked to the store and learned to read labels for carbohydrate content. We looked at what foods she did like, considered options to reduce total CHO content.

I listened a lot.

Finally last week while we were walking, I asked again why she was so afraid of going on insulin. She said it would hurt too much. I said we had great new needles and she'd barely feel a thing. She said, "Oh. Okay. Can I start it this week?" I was astounded at how matter-of-fact her tone was. She's taken to doing her insulin with meals and in the evening, requiring frequent glucose checks as well. She called me this week so terribly happy and excited that her sugar was 160, the lowest she'd ever seen! She's feeling great. She's feeling empowered to control what she had thought was uncontrollable! We still have a long way to go but she has done remarkably well in a relatively short time.

It took patience and more time than any provider can be reasonably expected to give. However, hopefully Marie will manage her diabetes well enough to avoid many of the complications she feared in the past. Her prognosis improves with every positive step toward self-care that she takes.

9:21:02 AM     comment []   Google It!  

I called one of my diabetic patients this week to see how she was doing. She said she was better after her fall and trip to the ER. She elaborated: She'd gone for a walk with her dog. She has severe neuropathy in her feet and so tries to use a trail near her home because it has an even surface. Anyway, in spite of her efforts, she took a fall and landed onto her shoulder. She was in extreme pain and feared she'd broken something. Somehow she managed to get up and get back to home where a kind neighbor took her to the ER. She said she knew they would ask her about what medicines she takes so she remembered to take her copy of the Shared Care Plan(SCP) with her. She said it was wonderful! All the nurses and doctors were so excited and pleased to have a clear, up-to-date copy of her meds. She was glad she remembered the SCP because it made it much easier for her while she was in pain. She did not want to take the time to find all her medicines and take them to the ER.

Yes, I'd call that a success! However, the situation highlights many problems as well.

1. I had no idea she'd had the fall and gone to the ER. Her primary care provider will no doubt get the summary via the hospital. However, as Clinical Care Specialists, we are not yet in the communication loop. I am not sure how to address this problem.

2. Since she received new medications to deal with her shoulder injury, her meds list is no longer accurate.I will need to revise her SCP and then get a copy to her. Logistically this can be a challenge especially as our case loads increase.

3. So far, there is no electronic method of up-dating patient information.

I am so very much looking forward to the electronic Shared Care Plan. It seems like such an obvious necessity and will improve patient safety and multi-provider communication. The logistics are challenging because it will require that the entire medical community embrace and implement this for it to work. The vision is compelling!

11:58:00 AM     comment []   Google It!  

It has been nearly four months since I joined this incredible project. It has been an exhilarating roller coaster ride from the very beginning. I don't think I have ever experienced working on such a dynamic team so intensively toward a common vision.

The Joslin Diabetic Center sent Richard Jackson and Bill Polonski to Bellingham a few weeks ago. They have actively integrated "patient-centered care" into their practices as physician and diabetic educator. They shared their expertise vividly and dramatically. I learned a great deal from their presentations to us as healthcare providers. However, it was watching these gentlemen in action with an audience of over one hundred patient and family members that most powerfully communicated what patient-centered is really all about!

In their presentations to staff, the Joslin team gave us these important things to provide to patients:

            Confidence in their ability to manage their diabetes.

            Hope, that they can live long and generally healthy lives with their                                                             symptoms under control.

            Effective treatment available; Evidence-based medicine.

            Clarity in exactly what they need to do to manage their illness.

            Knowledge of how to monitor their progress.

I had always considered myself to be very patient-centered but I was profoundly moved as I watched these gentlemen work with the large group of patients and their families. At one point in the discussion, they asked how many diabetics there expected to develop blindness as a result of their diabetes. A great many hands went up. Dr. Jackson then reviewed the evidence, the facts we know now, about retinal fibroplasia and diabetes. He said that people who control their diabetes, keep their hemoglobin A1C at normal levels, and have regular eye exams have a less than 2% chance of developing eye complications in their lifetime. There was a sense of shock and relief that went through the audience. Nothing could have been more powerful.

So I learned that evening how important hope is to our patients. I also learned that sometimes we as medical providers hesitate to have the patient start on insulin when clearly their A1Cs can return to normal sooner if they would use insulin.

I changed my practice approach the very next day. One of my patients has been extremely frustrated and terrified that he would die as his father did, in a diabetic coma. He has been frightened as he watched his hemoglobin A1C start to climb past 7.0. He was eager to start insulin and had already experienced giving his own injections when he was post-op from a cardiac by-pass. Both his provider and I had attended the Joslin inservice so she elected to not wait another few weeks to see how the larger dose of oral agents would work. She started him on Lantis that evening. When I called to see how he was the next day, he said:  “A miracle has happened! My fasting glucose was 127 this morning! I feel great and I am so happy I cannot believe it!”

Thank you, Joslin! You’re right on!!

5:02:59 PM     comment []   Google It!