Worry, a familiar & unwelcome companion

Worry, a familiar and unwelcome companion on the health journey. What do I have? Will I have to adjust my life (further)? Can I keep the faith? Who will help ME? What have I missed? Can I do it all? Fretting weakens- stomach aches, binge eating, inattention, sleeplessness, short fuse-what a pain! Who, on the health team – person at the center, caregiver, professional – who that is alive avoids worry? It can fill the spaces between the cells. Worrying makes me mad. It saps fuel from my limited tank. What helps me lessen worry? More information, empathy, kvetching for a minute (a timed minute), getting out of bed, making a list, grandkids, music, meditating on my peaceful place, following a mentor/counselor’s instructions, change something in my life, rarely, a pill. How can I help lessen the sum total of worry in my teams and networks? I can recognize the signs, provide information, be flexible, listen, empathize, and offer small unexpected kindnesses. These are magic levers of best health.

Access to your health team – Asynchronous communication

Much of health care depends on relationships. What do people at the center of care and professionals in health care look for in their relationship? Much as with any relationship – access when needed, exchange of information, listening, respect, speaking the same language, understanding each other’s values and priorities, follow through.  Relationships depend on access to each other – particularly tough in health relationships. Little natural about it with very different lives, different patterns, different circles, different priorities. In our personal lives we take access for granted. We know family habits and patterns. On the job we work in teams and routinely meet, our paths cross. In health relationships, not so much. Professional serve lots of people and people work with lots of health team members, many of them strangers – hence appointments and leaving messages. Kind of amazing that health relationships depend on direct connection. Why don’t we depend on asynchronous communication (NOT connecting in person or by voice, NOT in real-time). Examples include emails sent and read when each person has time; open notes (professional narrative entries into the medical record that people at the center of care can read via portal), and taping appointment and phone conversations for review after the fact with other health team members.

Technology can support asynchronous communication if people on both sides of the relationship are comfortable. Some are exceedingly uncomfortable. Especially challenging may be the change in skill set and habits. Some people at the center of care and professionals  struggle with new technology or  have no time to learn new technology – sometimes, but not always its generational. Changing habits can be tough for anyone.  Why change? I don’t want anyone looking over my shoulder! This app makes no sense, I don’t have time to learn it. I’ve learned to use it, but it doesn’t contain information important to me.
How do you use asynchronous communication for your health?

Kissing the Boo Boo

Health care is a tower of Babel. It’s the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don’t understand the language or culture of the people they support.  Caregivers often don’t really understand the person who they care for even if they love them. Who really understands another’s pain? People in one profession often don’t understand other professions. Few professionals or people at the center of care understand technology, policy, or insurance speak.

Here’s a stark example of the divide between the health industry (professionals, consultants, and information technology) and people at the center of care (patients and caregivers): For several years I have talked with anyone I can about a basic piece of information needed when a person has an unexpected health emergency in an unexpected place (an emergency room visit). What works for me when I’m in pain and what doesn’t?  What works for me when I’m scared and what doesn’t? Every caregiver I’ve discussed this with says, Oh yeah. Absolutely. Almost no professional, consultant, or technology person has even understood the question. It’s like I’m speaking Klingon. As a parent you know when kissing the boo boo works and when it doesn’t. When they’re scared some want to be left alone, others want you to hold their hand, others respond to specific music. Some people react badly to a particular medication, some react well to very small doses.
I’m trying to understand this divide. Aren’t people in the health industry also people at the center of care? Why doesn’t the Continuity of Care Record (CCR) and Blue Button Plus include this basic information? (The CCR document is used to allow timely and focused transmission of information to other health professionals involved in the patient’s care – medications, allergies, previous surgeries, diagnostic history). It would be a challenge to figure out how to do this, but isn’t it worth it? How can we bridge this gap?

Making a difference for caregivers!

MaryAnne Sterling (@SterlingHIT) and I were honored to discover that we had been invited to give the first presentation to the Health Information Management Systems Society (HIMSS) about caregivers-Supporting Family Caregivers on the Front Lines through Health Information Technology link. 40,000 people attended the conference last week and about 200 attended our presentation. HIMSS is waking up to the 93 million unpaid caregivers in this country. What would happen to the cost of health care if 1% could no longer provide care? We urged health care professionals to actively partner with the family health team, provide ready access to health information about the person at the center of care to caregivers, and treat caregivers as you would the person caring for you.  This beachhead was made possible by several years of work of a small but active group of members of HIMSS’ Connected Patient Committee and the Society for Participatory Medicine. Thanks to many of our readers who contributed to our material. Making a difference is so cool.

Authority and confidence does NOT equal right

I play saxophone in a combo – I’m the only horn. I come in with the melody – after we’ve improvised – with authority and confidence. My teacher tells me, “come in strong whether or not you’re right. The band will adjust. Better than hesitating and coming in weak.”

I thought about this when I was in a meeting the other day with a labor lawyer and benefits consultant. They both sounded authoritative and confident – and had opposite opinions. I spent as much time watching the strength of their presentation as thinking about whether their advice was right for the agency.

I recall that my 17-year-old cousin recently expounded about the biology of memory with authority and confidence: “You sure speak with authority and confidence,” I noted. “Sure,” he said with a proud smile, “I’m on the debate team!”

Authority and confidence and being right – not necessarily connected.

As a nurse I watch the expression of authority and confidence often from professionals and see how it affects people at the center of care and their caregivers. It’s hard to separate strength from right. One of the reasons I’ve chosen my doctors is that they can sound authoritative and confident, but they engage me in the question of what’s right for me.

A wise person once advised me, “when someone speaks to you with force, either positive or negative, imagine blue smoke coming from their mouth. Let the blue smoke pass you by before you consider the words generating that smoke.” 🙂

Disclosure – Revealing health issues

Disclosure: The act of revealing something. How does disclosure impact life for the disabled, chronically ill, or their caregivers? Disclosure has a threshold: before disclosure, after disclosure. Revealing something that may impact success or perception. I have multiple sclerosis, mental illness, am an amputee, have a son with autism, am very short, have chronic pain, manage my father’s care on the other coast. I’m applying for a job, college, a loan. My situation has changed, I’m newly diagnosed, I’ve taken responsibility to support…..

There’s legal implications: non-discrimination; fitness to do job. There’s personal style and boundary implications: I am who I am; it’s nobody’s business. It’s situational, personal, risky. Continue reading “Disclosure – Revealing health issues”

Technology is the cutlery and the dessert

I’m preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There’s the caregiving of life partnerships: partners, spouses, parents, children, friends.  That’s different from caregiving for someone who has challenges with activities of daily living and different from caregiving someone who has diminished mental capacity, is acutely, gravely ill, or is dying. The value of technology for caregivers and the person in the center is to enhance information access, communication, tracking and scheduling. The farther along the continuum of intensity the lonelier it gets and the harder it is to carve out time for anything else, especially technology. What did we do before video links like Skype or FaceTime, before tweets, chat rooms, and social media?  They’re easy to learn, easy to execute, immediate gratification – limit  loneliness. Tracking and scheduling on paper and spreadsheets has been forever-apps have a learning curve. Searching the web is easy, but getting your personal health information is hit and miss and takes maintenance to keep accurate and up-to-date. Communication with and between health professionals remains, for me, the greatest challenge. Technology can help – but only for those who already prioritize communication. If you’re good at communicating, technology is a wonderful adjunct. If both parties aren’t good at it, technology is no help at all. The main dish of caregiving is person-to-person. Technology is the cutlery and the dessert.

Xmas: Honor the Caregivers. Help the Helpers.

92 million caregivers in the US. Lord, so many.  Only growing. How many of these caregivers need care? My wife, an occupational therapist, comes home with stories of 90+ year-old spouses taking care of their 90+ year-old honeys.  In health, the focus is often on the person at the center of care, the person with a diagnosis or with symptoms. Yet it’s their community that needs care – their health team. I remember when our son Mike was sick and dying. People wanted to know how they could help.  We spent quite a bit of time parsing out all there was to do into bite sized pieces that people could take part in. They’re entitled to express their caring and love. My suggestion for this holiday season is to name the caregivers among you, and contribute to their health.  Take something small off their plate-run an errand. Offer them the magic levers of best health: diet, exercise, rest, humor, distraction, spirit.
Please find my Holiday here. Be well. Keep in touch.