Category

Caregiver

Thresholds

By Caregiver, Clinician, Consumer, ePatient No Comments
We continuously cross thresholds in our journey to best health. A threshold is a beginning, a change – before you weren’t, now you are. You cross a threshold when entering a building, a room, a relationship, an experience. Cross a threshold as you park your car, enter a clinic, go for an MRI. Cross a threshold when your doctor or nurse enters the room or responds to your email, when you call your insurance company, when someone asks, How are you? Cross a threshold as you feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before you didn’t, now you do.These thresholds upset our sense of balance, our inertia. The manifestation of imbalance can be spiritual, mental, and/or physical. Why me? Hopelessness, annoyance,frustration, fatigue The sense of imbalance when crossing a threshold can require 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 is 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. Sometimes we notice them. How can we increase our personal and organizational capacity to be a guide or companion?

Caregivers and Providers

By Caregiver, ePatient No Comments
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.

Magic Lever – Adherence to Health Plan

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments
Unfortunately some providers call adherence to a health plan – compliance. This unhelpful label implies singular focus on the patient, as in “they aren’t compliant with taking their meds”.

The ability to develop and adhere to a health plan is probably the most complex magic lever of best health. Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language, and alignment of the health team; standardized work flows with on-the-spot improvisation; electronic and non-electronic tools; leadership; and management of cultural and social habits and challenges. Setting up systems to make adherence more likely is challenging and labor intensive. The effort has to be worth the outcome.


Population health analytics – studies to predict those groups of people for whom adherence planning would yield the greatest benefit to health, experience, and cost. Evidence-based practice – adherence planning should be based on evidence – knowing it’s likely to do what the health team expects. Collaborative relationships, behaviors, language, and alignment of the health team – the intricate choreography with stars and cast who can speak to, understand each other, and work together for a common purpose. Standardized work flows with on-the-spot improvisation – adherence planning is largely production work repeated across groups of people. Yet each of us is slightly different and unique. Teams respond as people and circumstances change. Electronic and non-electronic tools – Adherence is not a point in time, but occurs and adjusts over time. Well meaning and determined people need help. Leadership – Creating and maintaining adherence friendly systems needs inspired leaders. Dance without a director is just a rave. Management of cultural and social habits and challenges – A person who doesn’t get a lunch break can’t take a mid day medication with food. A single parent with several children depending on public transportation can find it difficult to make a physical therapy appointment three times a week. Sensitivity to such challenges and public policy advocacy can increase the likelihood of adherence.
In short, adherence is serious work for everyone. It is not compliance.

Health IT 2013 – Turning vision into reality

By Caregiver, Consumer, ePatient, Leader No Comments
How will health IT make a difference a year from now? Please see the HIMSS blog carnival link for many visions. As we look to the recent past and into the future, the possibilities of health IT are staggering. While visionaries and innovators plot their course, let’s think for a minute about the boots on the ground – what does it take for possibilities to be integrated into the lives of consumers and the work flow of professionals? After all technology serves people – their interactions, relationships, needs, and wants – to attain best health. Early adopters, such as myself, flock to new technology, as do agencies seeking to increase volume and productivity, and businesses tapping into the next big thing. Most people and most health organizations, however, are notoriously slow to change habits that integrate the possibilities, creating a dynamic tension between what is and what could be. Adding to this tension is the generational difference between the young accustomed to and delighting in technology and the older ones hesitantly sticking their toe in.

I predict that 2013 will find an exacerbation of this tension with a demand for spiritual advisors, interpreters, change agents, and choreographers. Spiritual advisors help individuals identify and communicate their best health goals and help organizations stay focused on their mission – the technology vision has to accomplish something.   Interpreters translate and meld the diverse languages of stakeholders: varied educations, lifestyles, personal and world view, wonk and Luddite, best health and mHealth focused. Change agents guide health teams and organizations through rapid improvement. Choreographers design, align, and adjust the dance of cultural transformation for the stars (consumers) and supporting cast (health team). Do we value these skills as we plot the future?

Magic lever – Setting a goal for best health

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A best health goal is a milestone in a health journey. These goals can be set individually or collaboratively with a health team. Goals can run the continuum from lose 10 pounds in the next 3 months to make an appointment with a dermatologist to stay alive until my grandson’s wedding. The goal can be one of several, such as walk 50 feet with assistance, manage pain without IV’s or injections, and have meals brought to my home so I can be discharged. Goals need to be specific, measurable, possible, and explicitly stated. One of the characteristics of valued members of my health team is that they help me set goals and attain goals. If they can’t do this, they aren’t part of my team. The goals that I have set with my team this past year include lose 35 pounds in 9 months, walk at last 5 miles per week, do eye exercises 10 minutes every day until the double vision decreases, and stretch my quads twice a day. I have been able to meet all but the last one. Factors for success for me have been that the goals were stated and written; I kept a log of my activity and progress; and these goals were discussed at every opportunity when I met with members of my team, including my wife and my family. As a nurse it’s inexplicable to me how disconnected goal setting can be from the patient. While every profession has a treatment, care, discharge plan, often the patient and family don’t explicitly collaborate in setting the goals and mapping progress happens in the patient record or between professionals and not consistently with the patient and family. How can we get better at setting explicit measurable goals with our health team?

Magic lever – changing habits

By Caregiver, Clinician, Consumer, ePatient No Comments
One of the magic levers impacting best health is automatically using widely accepted, well tested practices (evidence-based practice). For example hand washing. Seems like a no brainer – washing hands between patients for professionals, before caring for your loved one, after going to the bathroom for everyone. Another is limiting antibiotic use to treat viruses. Also preventing or reversing obesity. I’m fascinated how hard it is for professionals to change practice informed by widely accepted research or even common sense. Is it similar to maintaining good life habits? I suspect that inertia plays a major role. It’s hard to change gears in a busy productive life. Heck, its hard to change gears in an unproductive life. How do we get the stars in alignment to do the right thing when we definitely know what the right thing is? How do you effect change in your professional and personal life? What are key factors that others can replicate? We spend so much money and human capital on trying to change behavior – consultants, training, how-to-manuals. What works? Being able to change habits is a superpower.

Me? or Populations?

By Caregiver, Clinician, ePatient No Comments
One of the challenges for the health care team – patient, caregivers, and professionals – is arriving at the patient’s personal goal of the moment and collaborating toward reaching that goal. I have found myself struggling to differentiate the likelihood of treatment success for a population versus the likely effect for me, my patient, or family member.  As my neurologist says to me, you are not the population. What works or happens for populations doesn’t necessarily happen or work for you. As a multiple sclerosis patient effects of treatment choices on populations is only one consideration got me. For example, I know that I will take no medication that makes me depressed or even less optimistic, no matter its proven clinical effects. My health team knows this.
Have you confronted such dilemmas in seeking best health?

Releasing the Inner Improviser

By Caregiver, Clinician, Leader No Comments

Best health includes improvisation in the relationship between health professionals and those in their care. One picture of improvisation is discretion to customize response and interaction and go off script and track with each individual’s or families journey. Yet the capacity of health professionals to remain up-to-date in their knowledge, compliant with practice and regulation, and productive while still able to be kind and improvise approaches possessing a superpower. As Kate commented yesterday, other knowledge workers – teachers – have the same challenges.

What conditions release the inner improviser?  Let’s consider a few: clarity of purpose; trust and team dynamics; predictability and responsiveness of  systems; and ability to learn from the improv: fix what seems broken.

Clarity of purpose can be mission, focus on the task at hand, or even clear boundaries. Every organization I’ve worked for had a mission statement. St. Peter’s Health Care Services (SPHCS) in Albany, NY, was committed to being a transforming healing presence in the communities we serve. Like the golden rule, easy to say, tough to do. Difficult decisions at SPHCS often included explicit consideration of the mission.  Focusing on the task at hand is mindfulness. As in right now the task at hand is pain relief, teaching, mobility, whatever. Not my co-worker, not the next person who needs me, not Dancing with the Stars. Concentration. Zen. Finally, improvisation occurs within boundaries – knowing the tune. For health workers the tune is policies and procedures, regulations, standards of practice.

Trust and team dynamics. Sustaining kindness and improvisation without feeling trust in yourself and your team truly IS superpower. Good team dynamics are healthy relationships – role clarity, communication that greases the constant shifting and movement of the day’s flow, re-prioritization, and mutual helpfulness.

Predictability and responsiveness of  systems used by your team –  workflow, supply chain, information systems. Knowledge workers create work arounds when systems don’t work quite right. They ingeniously seek a state where they can accomplish their daily tasks productively. Disruption of these systems draws valuable energy away from kindness and improvisation.

If all the stars are in alignment and staff feels able and empowered to improvise, we are idiots if we don’t learn and fix. Some proportion of improv is kindness and some is in response to something that is broken. Often both. Lord, I feel another post coming on.

I contend that the most important job of leaders – the people who supervise those who touch the public – is to nurture the environment of kindness and improvisation. Nurture the environment and model the behavior.

Improv and Health Leadership

By Caregiver, Clinician, Consumer, ePatient, Leader No Comments

Why improv and health leadership? Health experience is unique, of the moment, a journey. A different possible riff every moment.

The patient, client, consumer (let me use the term consumer for now) expects safe, quality, kind, empathetic care and service from professionals and their organizations-it’s a given. Even when safe, quality, and kind are present the health journey can be a very rough road. The challenge for the professional and support staff is to maximize the ability to know and relate to consumers as individuals and respond to the roadblocks, detours, potholes of that journey. 

The compliments my peers hear about health care are not usually about saving a life, successful surgery, hand washing. Rather it’s about the housekeeper who brought coloring books to the child; it’s about the nurse who knew the child’s passion for Ninja Turtles and brought a Ninja Turtle balloon to the bedside or exam room; it’s about the doctor who called the family on her day off; it’s about the registrar who found a private space for a mother to breast feed a non-patient child. These leverage the whole experience positively.

The relationship between professional caregivers and consumers includes constant improv-discretion to customize response and interaction and go off script. Yet the capacity of caregivers to stay up-to-date in their knowledge, compliant with practice and regulation, and productive while still able to improvise approaches superpower.

How can professionals and support staff tap their inner superpower without the intentional complicity of their leaders? Health leaders model and create the conditions that cultivate and learn from this improv. More about those conditions in the next blog.

Superpowers

By Caregiver, ePatient, Family man 2 Comments

What are my superpowers? What are your superpowers? Love having this conversation with my grandson. Today, he has atomic breath like Godzilla (especially in the morning). I first had this conversation with my son when we first knew he was dying of cancer. His superpower was poetry.

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 way things go together
like continental tracts of land
punctuated by water and lights
and roads and other concrete artifices

Preface to “the way I become about dying” by Michael P Funk, 2002

When diagnosed with MS, my superpower became the ability to accept what is. Superpowers are a magic lever for best health.

What are your superpowers?