What Happens Next? Planning Care

People: What’s wrong with me? Should I tell the doctor? What does she want me to do?  Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? What should I worry about? What should I do if it happens (again)?

Clinician: What’s on his mind? What’s wrong with him? What should I do next?  Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?

Questions, questions, questions. So many bumps in the road and detours  in the health journey. Few maps, spotty GPS at best.

Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.

We are each an experiment of one.

These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.

Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.

People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.

Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.

Everyone: Expect your electronic health records to be able to record and track care planning.

Health Literacy Month

Last week I was describing a mutual friend to my son as pathologically optimistic. Overhearing us, my seven-year old grandson asked me what that meant.  I started in with glass half full, glass half empty. Oh, Opa, he interrupted me, I know what optimistic means, what does pathologically mean?  I was using language my grandson didn’t understand and he questioned me. I attend a weekly conference call of OpenID HEART, that I’ve written about here before, and I understand about a quarter of the discussion – very technical.  I am not as ready as my grandson to interrupt and question, even though when I have, my very basic language questions are respected and welcome.  Rather I usually take notes and ask the questions on the list offline. I often facilitate meetings. I try to pay attention to the language people use and explain acronyms or jargon.  If I see a furrowed brow, I ask the furrower if they have a question. As a direct care nurse, I made sure I created teach back moments when helping people at the center of care prepare to manage without me.
Often I have the sense that people consider literacy as a dumbing down – write to the fifth grade level, eighth grade – whatever. Many colleagues in any gig I’ve worked, say, communication sucks! I, however, am continually amazed that we can communicate at all. My friend, Helen Osborne at www.healthliteracy.com tells me that literacy is about language, age, culture, disability, emotion, and cognition (genetic and evolving).  That’s a lot to consider when communicating. My communication usually just falls out of my mouth.

Continue reading “Health Literacy Month”

Embracing your friend, ignorance

Pondering ignorance this week. Not so much the ignorance we see with politicians (although that can be quite awesome on a massive scale), but the not knowing. Discovering a realm of not knowing you didn’t know existed. I’ve seen varied reactions: mild curiosity, questioning, enthusiastic digging and pulling, fear and whining. I participated in a Patient Shark Tank yesterday. A Shark Tank is a forum where aspiring entrepreneurs make business presentations to a panel of “shark” investors (or in my case, patients). I saw a combination of not knowing what they didn’t know and enthusiastic digging and pulling new information through research, interviews, and testing. These aspirants welcomed someone shining a light on something they didn’t know they didn’t know. This week members of my team asked many questions when finding something they didn’t know – clarifying, defining, path finding questions. Fear is me when I got the diagnosis of MS and was told I needed to walk with a cane.  I whined to my son, I’m 50 years old and I need a cane. Mind shut down, paralyzed, dependent. Oh get over it pop, it’s just another accessory. Ignorance is your friend – possibilities and adventure ahead.

Are We Safe?

Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions.

  • What kind of safety – emotional, physical, or cultural? Personal, team or organizational safety? Absence of error, mishap or tragedy?
  • What about the dynamic tension between risk and rights? We could feel absolutely safe with a trusted Big Sister always watching and protecting. How much of our human rights would we give up for that absolute safety?
  • What role do we ePatient drivers play in our own safety? What role do our leaders organizations play in our safety?
  • How is safety demonstrated? Surely part of safety is perception.  Continue reading “Are We Safe?”

Open Notes

My mission is to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health. Working together means relationships and communication. Sometimes I wish I had more face time with the professionals participating in my care. Paradoxically, although my relationships with my professional team are strong, I don’t really want more face time with them, it’s too stressful. Also my brain is not at its best during my face time with them. I make lists of questions often forgetting to ask some. Then my wife asks a question after the visit I never thought of during the visit. Secure messaging/email has helped greatly, allowing me to ask those questions, receive reminders, extending the communication beyond the face time. The Robert Woods Johnson sponsored Open Notes initiative extends the relationship and communication further, making the professionals’ medical record entries available to consumers. See this month’s Annals of Internal Medicine article and the Geek Doctor’s and the Society for Participatory Medicine’s blog posts. Potentially, access to our professional teams’ notes could help engage and inform us more in our care. The challenges extending this demonstration project include providers writing notes that are understandable by and useful to consumers, readily accessible electronic records, and a mechanism to ask questions, comment, and correct. Very exciting potential here. Stay tuned. Have any of you read your providers’ notes?

Caregivers and Providers

Yesterday, Peter Elias, MD, fellow member of the Society for Participatory Medicine (www.participatorymedicine.org) asked us to offer questions that caregivers may have of providers as they care for their loved ones with cancer. I’m recall our experience caring for our son, Mike, when he was being treated for and dying of melanoma. Mike was a young adult in his 20’s with very clear ideas about quality of life – I don’t want someone wiping my butt; and about death – I wasn’t born with a tattoo on my ass telling me how long I had to live. He leaned into our family’s love for him and adamantly continued his education. He talked about his struggles openly and expressed himself in macabre humor and inspired poetry. He bristled at the scent of anyone making a decision for him. He was grateful and accepting of our participation in conversations with providers during the diagnostic phase, but when he knew he was going to die, he had the difficult conversations with his doctors alone. He had no problem with us asking questions later. So what questions did we, loving caregivers, have for the providers?

  • How do we help him manage the insidious effects of the disease and treatment – constipation, fatigue, bloating, sensitivity to heat, melancholy, etc.?
  • How likely will the surgery, chemo, radiation, steroids affect his prognosis and quality of life? What if he doesn’t want them?
  • When and for what should we contact you and if not you, who? When should we go to the Emergency Department?
Sometimes we agreed with the provider and disagreed with Mike. The biggest issue was hospice. We wanted Mike to enroll in hospice to get the benefit of their ability to manage activities of daily living. He resisted mightily. He didn’t need it. He reluctantly gave in when constipation got so bad.
Now that I think about it we didn’t have that many questions for the providers. Our biggest interaction was help find the right providers – ones that would show him compassion, listen to him, and design his course of treatment based on his direction. When he needed brain surgery and then lung surgery we were more involved in post care than surgeon selection.  We asked a lot of questions of the residents, especially about pain management. Mike would be curled up post-op in a fetal position and say he was a 3 on a scale of 1-10. Clearly he was an 11. The best docs helped us help him manage that pain when we asked. We loved those providers that respected him and gave us anytime access to ask questions as they arose. Access is a priceless commodity. The best providers took care of us a little too.
Oh, Mike, I miss you so much.