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

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. 

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