Personal risk management – When s***t happens

When I ask my doctors what worries them the most about my future health, both my neurologist and primary care doc say, they worry that I’ll fall.  Everybody faces risks – too little or too much medicine, anxious, scared, or melt-down, infection, stranded, lost, jobless, forget something important,  accident, heart attack, caregiver or neighbor moves, power goes out, no help when you need it – on and on the list goes.  While no one can anticipate or prepare for every risk, couldn’t we prepare for likely risks?  So for me its the risk of falling.  I stay as strong as I can, ride a trike that can’t tip over, walk with a cane, strengthen my core, get help for uneven surfaces, pay attention whenever I move, sit down when I’m dizzy, reduce clutter, don’t let anyone depend on me for balance.

Continue reading “Personal risk management – When s***t happens”

Quality of Life for People at the Center of Care

People at the center reflect often about quality of life – Sometimes in relation to decisions about medical care as in, I’d rather have quality of life than chemotherapy or for the disabled, we value individuals experience and quality of life. What does quality of life mean? Whose quality of life? I find it hard to separate quality of life of the person and their family caregivers – so intertwined and mutually dependent.

Distilled from my personal and professional lives, I’d say that quality of life included:

  1. Control of life – real choices
  2. Understandable information to make those choices
  3. Peace of mind
  4. Rest – a break
  5. Treated respectfully
  6. Recognized and appreciated
  7. Relief from pain and worry
  8. Reduction in controllable stress
  9. Connection to others – not alone

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EHR Access for the Family Caregiver

We’re looking at technology that can help the primary caregiver support someone’s health journey. Access to the electronic health record (EHR) impacts seven of the fifteen needs described in a previous post:

    1. Common goals for the health journey developed with the person at the center, known by the entire health team
    2. Plans to attain those goals
    3. Current medications, schedule of taking, how they affect the taker
    4. History of medications, what worked and what didn’t
    5. Members of the health team, professional and lay people, how to reach them and the ability to reach them
    6. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
    7. The same information in the hands of the entire team including the people at the center that they can understand

How can family caregivers access electronic health information of the person they support? Today, I’m with my 87-year old mother. I had her show me the portal she uses at the system where she gets most of her medical care. She wants me to have access to her medical record and wants me to be able to communicate with her doctors as she does. However, the site clearly says that unless the patient is a child under 11 years old that she can’t give me my own access to her account for technical and privacy reasons. So she gave me her login and password. This lack of direct access for primary caregivers is the norm. It’s NOT a privacy issue if the person give permission. It’s a technical issue that has long been solved by Children’s Hospitals trying to give access, some full access, some limited access, to parents and guardians of teens and children with blended and disputing parents. Rather it’s a matter of will and priorities. Some independent electronic health records, such as Practice Fusion, have mechanisms for primary caregivers to be granted access with permission. Also those health systems involved in the OpenNotes initiative – Beth Israel in Boston, Geisinger, Harborview in Seattle, are exploring giving primary caregivers access to physicians’ progress notes. Give us our data!!

Control and Connection – HIT

Last week I began a series, What do Caregivers need to manage health?, about Caregivers and Health Information Technology (HIT).  Due to technical difficulties, my subscribers did not receive an email of this post.  Find last week’s post here.

I listed 15 needs of people at the center of care including:

  1. Control of their life
  2. Connection to others – not alone

Social media and this blog help me keep control of my life and connect to others. As a student of health and of the teams, communities and organizations involved with health I study myself and my experience first. If that isn’t the definition of self-centered, I don’t know what is. This blog, using the WordPress platform, is my primary means of communicating and reflecting. I did have some help setting the blog up, but the platform is intuitive and the forums and help lines are useful.  Other less intense, free blog platforms include (there are many): Continue reading “Control and Connection – HIT”

What do Caregivers need to manage health?

What do caregivers want from Health Information Technology (HIT)? Most caregivers, people at the center of care, don’t think about HIT. They think about what they need to manage individual health, theirs or the person they support:

  1. Quality of life
  2. Control of their life
  3. Peace of mind, rest, respect
  4. Relief from pain and worry
  5. Reduction in controllable stress
  6. Connection to others – not alone
  7. Common goals for the health journey developed with the person at the center, known by the entire health team
  8. Plans to meet those goals
  9. Current medications, schedule of taking, how they affect the taker
  10. History of medications, what worked and what didn’t
  11. Members of the health team, professional and lay people, how to reach them and the ability to reach them
  12. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
  13. The same information in the hands of the entire team including the people at the center that they can understand
  14. An understanding of real and potential risks and a plan of how to manage those risks when they occur.
  15. Affordable and accessible care
Over the next few weeks I’ll think about how technology could help with any of these 15 needs. Remember, though, people and relationships first, then technology.

Not being alone together

I’ve officiated at about 20 weddings over the past 35 years – the most recent – last weekend.  Being a minister is like being a nurse. It’s a gift to have  moments of intimacy with people at crucial moments in their lives – glimpses of the fiber of relationships between loved ones and with their family members. The fiber can be tough and sinewy, new and delicate, or anything in between. As a student of relationships I often reflect on this x-ray of human connections.  Can I read anything about durability or the capacity to face inevitable uncertainty or tragedy? I look for respect, listening, appreciation, learning, humor, affection. I so appreciate people who speak well of their partners. They are not alone together.  My 39th anniversary just passed. Phew.  We knew so little, we were so young. Who could have predicted we could make it 39 years? We certainly needed and sought help. 

Continue reading “Not being alone together”

Born again customer service

A car rental experience from hell. Took 2 1/2 hours to complete car rental.  Poor signage, walked 3/4 miles to wrong location. All systems down. Only one person registering. Hour to wait in line to get car. Gave us a car from wrong vendor. Told to drive wrong car around to front of lot. Got lost.  Then no clean cars to rent. Beleaguered staff showed exemplary customer service. They made the experience possible, but we’ll still never use that company again. The e-systems didn’t work, the lot was poorly organized and they were grossly understaffed. Sound familiar? Happens in health car regularly. Customer service helps to survive the moment, but can’t bandaid bad management and poorly designed systems. Renting cars is a luxury, health care is not. Does born again customer service in health care supplant good systems and good management?

Community Capital – a prescription for best health

This week I heard someone speak about the importance for everyone to have the opportunity to be part of a community. I am part of many communities: my family, my work teams, my neighborhood, the virtual e-patient community, this blog community, nurse communities, music communities. My neighbor, an amateur photographer, invited us to her first show of her work. I was tired. Long day at work. I just wanted to vegetate. But I told my family at dinner about the community capital presentation. We all decided to go to the photo show and support our neighbor. The look on her face when we appeared was priceless.

Best health depends on communities. I’m struck by the impact of aloneness – the opposite of community.  For some, like me, its occasional-brief and unsettling. Moving, losing a job, my illness, loved ones’ deaths.  For some it’s constant – debilitating chronic illness, disability, uprooted, homeless, or persecuted. A key to spiritual health is finding community and connecting or reconnecting. A solid investment – community capital. Wish someone could write a prescription for community – powerful with limited side effects. I’m intrigued by the frame of community capital to guide us in the various health journeys we’re on. Focus on the physical, yes – activities of daily living, pain management, etc. But also leave room for the investment in community capital. Be the prescription this week.

Leadership in Family Health Crises

Sudden, severe illness or protracted undefined illness likely causes a family health crisis. Families in health crisis start from a position of acute stress yet have much to do. For a frame. consider that physical health starts with spiritual health, then mental, then physical.  For the family spirit is morale, mission, purpose, direction. Mental health is leadership. Often a family in crisis operates in survival mode and lacks spirit and purpose. Family success in managing the health crisis depends on leadership working to improve spirit, defining and clarifying purpose, and aligning direction.  The challenge multiplies when the family member with sudden or undefined illness has a family leadership role. Families in health crisis need support from their health team and community to supply a temporary exoskeleton of leadership – acting as a guide on a path out of crisis, finding and advocating for resources, providing kindness, listening, and caring. Do you think your team or your community does or could support your family when in crisis? Health crises are guaranteed to happen if you live long enough. If you are a health team member or provider, do you or your team know how to assess the leadership needs of the people at the center of the crisis? Do you have a crisis plan that can be put in place to act as temporary family leaders or to support those stepping up as temporary family leaders?  Families and their health teams need crisis plans.

Should you bring someone with you to your next doctor’s appointment?

Should you bring someone with you to your next doctor’s appointment? If you’re asking, the answer is yes.  

How do you be the best companion if you’re asked? Prep in advance, listen, record, ask questions. Know why you’re going? That means both What does the person want to accomplish during the appointment? and Why are you accompanying them? There are many types of visits.  Here are 4:
  1. Routine physical 
  2. New acute issue
  3. Follow-up for an acute issue
  4. Follow-up for a chronic condition
Prep in advance for all of them if you can. Bring or make lists:
  • Current meds – prescribed by anyone plus any not prescribed (over-the-counter). Note if they’re taken as prescribed, any questions about the meds, any effects that cause notice. If you can, bring the medications in their containers, just in case.
  • All members of the health team: medical and non-medical.
  • Anything medical or health that has occurred since the last visit with this clinic or clinician.
  • Questions that come up in prep
During any visit, listen and record. This is active listening-make sure you understand. Repeat back what you hear. Fill in blanks of information if you can. Ask if you can record the session.  Use your phone to tape if you have one or bring a tape machine. Ask the person with the appointment if they understand and if they have any questions. Ask for a copy of the clinician’s notes.  If someone brings up HIPAA as a reason not share information, they have it backwards. HIPAA mandates the sharing of health information with the person with the appointment.
As soon after the appointment as you can, go over what happened and what you both learned. Memory of lots of details can fade quickly in the best of circumstances.
Going to the doctors with someone is a gift.