Category

Caregiver

Equity: more to achieve the same #005

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Episode, Leader | No Comments

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More

Pillow, pills, poop, piss, and pain #004

By | Caregiver, Episode, Family man | No Comments

Episode Summary

  • Blood, sweat, tears shared by two.
  • Helping one end and another begin.
  • A disaster that ultimately gives back.
  • Hearts clubbed by diamonds in spades.
  • We learned, we cried, we continued.
Blog subscribers. If  you don’t see the podcast player, click the blog post title above

Read More

Men Caregivers Part 1 Podcast #003

By | Caregiver, Episode, Family man | No Comments

Four of 6.4 million men caregivers muse on their varied experience, emotions, challenges, joys. We did it because we wanted to and we could. Great stories! Read More

Crossing Thresholds

By | Caregiver, Clinician, ePatient | One Comment

Before I officiate at a wedding, I meet with the couple. Getting married is crossing a threshold. There’s a moment before which you aren’t married, after which you are. What’s the difference, one moment to the next?  I’ve officiated at 26 weddings over 40 years. One time, the couple couldn’t say.  I didn’t officiate.

We continuously cross thresholds in our lives and in our journey to best health. A threshold is a beginning, a change – before we weren’t, now we are. We cross a physical threshold when entering a building, a room, a town… We cross a threshold when we enter a community, a relationship, an experience. We cross a threshold as we park our cars, enter a clinic, go for an MRI; when the doctor or nurse enters the room or responds to an email; when we call our insurance company; when someone asks, How are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before we didn’t, now we do.

Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, rage  Crossing a threshold can energize or suck energy, depending on the moment and perspective.

A pivotal moment for me as a nurse was discovering the opportunities I had to experience some of these threshold crossings, moments of imbalance, with others. Having a companion or a guide at these moments can be huge. A smile, a touch, information, can change the trajectory of that crossing, speed the regaining of balance, add energy, provide relief, increase hope. My mission became: to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.

Threshold crossings occur around us constantly. Consider being a companion, a guide when you notice someone approaching a threshold. You can make a difference in the crossing.

Photo by Mantas Hesthaven on Unsplash

The Minute Before and the Minute After

A new threshold – laid off

Guests on People’s Health Journeys

 

Best Spiritual Health, Dying

By | Caregiver, ePatient, Family man | One Comment

Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live.  What a gift.  Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.

Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died.

I decided that my inaugural podcast should be about Mike. The timing is right and my heart is full and open. I’m taking a Seth Godin course about podcasting. This fellowship, this learning community, has given me strength and tools. On my 50th birthday party at the Potato Barn in Schoharie County, NY, my boss, colleague, and friend, Bob Doherty interviewed Mike.  It was five months before he died. That video is a treasure. The pressure in my stomach and chest threatened to leak out through my eyes as I listened to every sound and silence. Can I really do this? I must be nuts. But remembering the roller coaster ride of humor, wisdom, misery, love made it possible, no, necessary to go on. That first night after deciding on this subject for this first podcast, I couldn’t sleep from bursting with emotion, I recorded all the stories I could remember about Mike and his dying. The next morning I called Bob and we talked about his perceptions of those days – interviewing Mike, me at work, and the spiritual health Mike had. We spoke about the death of Bob’s wife who died a couple of years later. This podcast blends all that.

Here’s an excerpt of the poem Mike wrote shortly before his death that I read on the podcast.

the way I become about dying

I am not things.

I am sums of things,

guessing that I’m part of God

wondering if there is some place where my soul will go

from where I might look down

with advantages my eyes did not have

and see the tops of trees

which I used to walk beneath for

shelter from rain and sun,

and see the things go together

like continental tracks of land

 

I am this very moment, dying

from headache tumors that

erase my cognitive ability so that I might

be retarded when I wake up tomorrow,

or I might know answers,

or I might still be guessing

 

Links

Mike Funk Podcast HHP001

Interview with Mike

Interview with Bob

Full poem of Mike’s

Note: I have applied for listing on iTunes, Stitcher, Google, and more. As of Nov 18, 2018, 08:30, these aren’t live. But they will be in a few days. I will podcast at least twice a month. Please subscribe.

Best Health at End of Life #001

By | Caregiver, ePatient, Episode, Family man | 6 Comments

Episode Summary

Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality.

Episode Notes

Links

Interview with Mike

Interview with Bob

Full poem of Mike’s

About the Show

Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen and I have worn many hats in my 40+ years in healthcare as a patient, caregiver, nurse, informaticist, and leader. Everyone wears many hats, but I wear them all at once.  We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel.  Let’s make some sense of all this.

My guests and I reflect on what works for people, professionals, and communities in their journeys toward best health: learning, making choices, communicating, and adjusting to realities. We can range from personal, clinical, technical, entrepreneurial, organizational, to whatever interests me at the moment. Join the ride!

Readers of Health Hats, the Blog, we will publish a Podcast in at least two of each month’s weekly posts. To subscribe go to the blog https://www.health-hats.com/

2018 Healthcare Literacy in Research Conference

By | Advocate, Caregiver, Clinician, ePatient, Researcher | No Comments

I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?

What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?

So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.

Here’s a sample of the best of what I heard and learned.

  • Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
  • One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
  • Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
  • Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
  • Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy.  In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
  • Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.

I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.

Photo by rawpixel on Unsplash

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Life literacy – If you can’t explain it to a six year old…

Health Literacy Month

Health Literacy – a Magic Lever

 

Pain Management Choices: One Person’s Point-of-View

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | No Comments

Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…).  Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.

Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.

Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below. Read More

Stoking My Fires

By | Advocate, Caregiver, Clinician, ePatient, Family man | No Comments

Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!!  Too funny.  How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard.  When health dips, my spiel is BS.

My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?

Photo by Dominik Lange on Unsplash

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Values for Managing Health

Re-calibrating – Finding Balance

Need a recharge? Listen for what works.

 

Putting Patients at the Center of Pain Management Decisions

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Researcher, Uncategorized | No Comments

Clinical decision support researchers, developers, and implementers this is for you. Clinical decision support (CDS) technology can maximize trust and engagement during decision-making if used to its full potential. Or NOT. Consider the patient and family perspective in making choices about pain management and opioid use CDS.

We know that often, clinical decision-making depends on the relationship between patients, the family caregivers, and the clinicians they interact with. We know that time and life flow greatly impact that relationship. The patient appointment with a clinician often lasts 10-20 minutes – sometimes less, sometimes more. That time is precious. The clinical visit for patients and caregivers represents a drop in the ocean of their health management. Clinical decisions live amid housing, child/parent care, transportation, financial and other life decisions. It’s seldom one decision, but repeated decisions. Think of taking a medication three times a day or following a diet. Only a small proportion of clinical decisions take place during the appointment. Most questions about clinical care or following the agreed upon plan of care occur before and after a medical appointment. CDS technology can maximize trust and engagement to inform decision making, but the effectiveness depends upon the information that is presented and how the CDS is implemented (e.g., when and where it is presented, how it is presented, who it is presented to).

I am a member of CDS Connect, a team of academics, researchers, programmers, clinicians, clinical leaders, informaticists, policymakers, patients, and advocates. Our work is funded by the Agency for Healthcare Quality and Research (AHRQ). The CDS Connect Repository demonstrates AHRQ’s mission of ensuring evidence-based research is clearly understood and utilized in clinical practice, by codifying and freely sharing evidence-based standards of care as CDS artifacts. In 2018 we are supporting clinical care related to pain management and opioid use.

This article provides insights on the patient and family caregiver perspective in making choices (clinical decisions) about pain management and opioid use in the face of uncertainties. That perspective includes the range of engagement experienced by patients and clinicians, recommendations for artifacts that would help, and some design considerations when researching, developing, or implementing CDS.

Patients and Clinicians Manage Pain Together

While there are 46 words for snow in Iceland, English has far fewer synonyms for physical pain (e.g., suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness). Similarly, CDS that supports pain management should not take a one size fits all approach. Patient and caregiver engagement levels and perspectives vary as much as snow. Effective CDS artifact design and implementation understand this range of patient engagement:

Patient A: “I drive my own train”

I know my personal health and life goals. I’m the CEO of my health team. I trust my team. I want a plan to meet my goals and reduce my pain. I’m not afraid to lack knowledge.  I’ll get it eventually. I’d appreciate answers to my questions when I have them. I can keep track of stuff, but welcome tools to help me do that.

Patient B: “I’ll do whatever you tell me to do”

I’m trying to manage life. I go to the doctor when I have to.  I may or may not get along with the doctor. I don’t think he really likes me. I’ll try to follow instructions if I can [understand, afford, get there, remember]. Really, I prefer video, my reading of English isn’t that good. Maybe my grandson can explain it to me when I get home. I talk about medical problems [at place of worship], [at home], [with family/friends], [never]. In my culture, doctors are the boss.

And everything in-between.

 

And during all this, they are in pain. The severity of pain may impact people’s ability to engage with a clinician during an office, urgent care, or emergency visit. It is very likely to impact their ability to participate in decision-making and sort through all the information relevant to their condition.

Clinical care occurs in the context of a relationship between patient and clinician in an institutional setting (office, urgent care, emergency services). The variation in clinician engagement varies as widely as patient engagement:

 

Provider A: “What’s most important? My relationship with my patients”

I’m available when you need me. Tell me what you need and what you understood. Who is your care partner? Can you afford the care being discussed? I’m comfortable with choices, uncertainty, and risk and can explain it. I know when there’s a disconnect. I want to know and record the outcome of the decision we and others made. These CDS tools help me.

Provider B: “Just get me through the day, I’m so tired”

Here is a print-out with instructions. I’ve only got 7 minutes for this visit. I’ll get dinged if I don’t check the right boxes. What do you mean, you didn’t follow my instructions? Really, who cares? Where do these people come from? What am I supposed to do with this pop-up or instruction? It’s disruptive. I’m spending too much time in the EHR already.

And everything in-between.

 One size does not fit allCDS may be most effective when designed to match the level of patient and clinician engagement. Well-designed CDS that presents relevant information to the right person, when they need it, in a format that is useful and easy to understand, via the right channel (e.g., an EHR, a patient portal or perhaps a mobile app) is a feasible and realizable approach to bridging some of these divides – whether based upon motivation, skill, experience, or culture.

Patients could use your help to manage their pain, in partnership with their clinicians

Imagine CDS delivered via an app or a patient portal that is available 24/7. The “tool” displays a pain management dashboard comprised of the following information:

  • Treatment goals – including physical function, behavior modification, and any associated milestones
  • Plan of care – who’s doing what and when are they doing it (including the patient, their caregivers, clinicians, and ancillary care team members). This includes a calendar view of the plan of care, to more easily track and act upon each entry.
  • An up-to-date list of all care team members (including the lead clinician for pain management and caregivers) with contact information and preferred communication methods and hyperlinks
  • Links to moderated information and social resources tailored to the patient

This dashboard could support both patient perspectives described above – the “take charge” patient who wants as much access to their information as possible and the “tell me what to do” patient (or their caregiver) who might benefit from the information as a reminder of the plan of care. It also supports the patient’s clinicians by placing the patient in a better position to agree upon, track and comply with their plan of care.

Other patient-centric CDS tools may include:

  • A pain tracking app integrated with the EHR
  • Reminders of tests, activities, behavior modification plans, or prescriptions along with their status and any actions needed
  • Mobile health technology used to present CDS, such as Telehealth or mobile apps
  • A display of treatment options, the circumstances that led to those options, and the option chosen

Your Efforts Can Influence CDS Engagement, Acceptance, and Effectiveness

Patients, direct care clinicians, and those that support them need to have a seat at the table from the inception of the CDS – and provide their input during research, design, development, testing, implementation, and evaluation. Simple, intuitive, user-centered design is critical to acceptance and usefulness. Well-designed artifacts are developed with an awareness that frequently, the work of using these tools falls to caregivers and clinical support staff. Effective CDS is designed and implemented to support both patient preferences and clinical workflow. Rich involvement of all people at the center of care allows for consideration of their varied preferences, abilities, life flows and workflows, thus improving the adoption, impact, and usefulness of CDS.

This article seeks to provide insights into the patient and family caregiver point of view while making choices about pain management and opioid use. It accepts that one size does not fit all and considers the range of engagement experienced by patients and clinicians. It provides recommendations for CDS artifact development through actual use. The key is involving the people at the center of care in all phases of CDS development and implementation, including patients, their caregivers, and direct care clinicians. Embracing these strategies helps to ensure that ultimately, CDS will positively impact patient health outcomes.

Photo by Stefano Pollio on Unsplash

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Managing Pain – A Reality Check

How many words for pain?