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caregivers Archives - Page 10 of 12 - Danny van Leeuwen Health Hats

People at the Center -> Person at the Center = Gaps

By | Caregiver, ePatient | 2 Comments
A dear friend, Vern Schmaltz, died this week of ALS. He had so looked forward to retirement. His wife, full-time caregiver, faces a considerable gap in her life. “What will I do in the morning?” For the past months they’ve worked together to manage the daily routines of his life and navigate the medical system. She was committed to this more than full-time labor and labor of love.  Now the gap. Winding down, feeling lost, unmoored, exhausted, alone. She knew to take care of herself these past months-but easier said than done. Whatever reserves dried up in the intense last weeks. We spoke for a few minutes about reducing manageable stress – grief is not manageable stress nor is right sizing her home nor rebalancing finances. No stress seems manageable now. All of a sudden the people at the center is the person at the center. Gaps from losing a person at the center fades slowly. Filled in by life. It’s been more than 10 years since my son, Mike died.  Freaks me out that the gaps have faded so much. I treasure those gaps. 

Honor the caregivers, help the helpers

Leaning Tower of Babel – Give me my Damn Data?

By | Advocate, Caregiver, ePatient | No Comments
Today I attended a meeting with 9 people, including me, speaking 5 languages – Mandarin, Cantonese, Vietnamese, English, and bureaucratic / medical -ese. It was a board meeting of a Chinese-Vietnamese community association of family caregivers to individuals with disability. Double  translations were occurring. The topics included advocacy and managing the state health and public school systems.  When I remarked on the added challenge of translation on top of care giving,  I heard a story about a hospital that wouldn’t allow family interpreters if they had a medical interpreter on staff – family members wouldn’t understand the medical terms. Yet, if there was no appropriate interpreter on staff, the family interpreter was required. 

One of the needs of caregivers is: The same information in the hands of the entire team including the people at the center that they can understand. So much easier if you speak English! According to the 2011 American Community Survey from the US Census Bureau, 20.8% – fully one-fifth or 60.6 million people – speak a language other than English in their homes.

Understanding someone else’s experience – oh my!

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man | No Comments
Understanding someone else’s experience – oh my, so hard! It’s difficult enough to understand my wife’s experience.  I have to pay attention, let my preconceived notions, and mind rants go. And we’ve been together more than 40 years, love each other, know each other. One of the most challenging parts of my career has been to understand the experience of people at the center of care: 1:1, informal group chats, formal focus groups, and surveys.  An imperfect science at best. The more formal and scientifically rigorous, the less I think I know. The very act of standardized questions means we think we know what’s important to ask – what’s important to them. I’m not so sure. But what about people with cognitive and communication capabilities different than mine? When I worked at Boston Children’s, I wondered about the experience of non-verbal people. Surveys don’t help.  When my boys were very young, my older son would tell us what his younger brother was saying.  I couldn’t understand a word.  I just knew he was trying to say something very passionately. People together at the center often know first when something is off for a non-verbal person.  At Advocates, where I work, we rely on direct care workers to notice something is off. They contact a nurse who does an assessment and can often pinpoint a cause: pain, infection, whatever.  We conduct surveys to better understand quality of life of the people we support, but it’s tough.  Who fills out the survey? The results have some value, but how much? People with different cognitive and communication capabilities than me have an experience with life. What is it? What do they aspire to? How can we know? I want to know!

Communicating End-of-Life decisions

By | Advocate, Caregiver, Consumer, ePatient, Family man | 2 Comments

My 87-year-old mother and I have had many chats over the past 15 years to plan for end-of-life. As you can imagine, the content of these chats have evolved over the years. Now she’s quite certain about what she wants from her life at this stage. Now that she’s so clear and she’s worked with her lawyer and doctors to complete an Advanced Directives and Medical Power of Attorney, we wonder how this information gets communicated at key moments. So let’s look at end-of-life decisions and information sharing as part of this series about Caregivers and Health Information Technology (HIT). This topic touches on several of the 18 needs of people at the center of care presented previously:

  1. Control of their life
  2. Common goals for the health journey developed with the person at the center, known by the entire health team
  3. Plans to attain those goals
  4. The same information in the hands of the entire team including the people at the center that they can understand
How do people at the center of care make decisions when they approach the end-of-life?  Some people focus on Advanced Directives, Do Not Resuscitate, Health Care Proxies. Another document is Practitioner Orders for Life-Sustaining Treatment (POLST), called MOLST (Medical Orders for Life-Sustaining Treatment) in some states.
From Wikipedia: Unlike advance directives, a POLST summarizes the patients’ wishes in the form of physician orders for end-of-life care.[3] POLST provides explicit guidance to health professionals under predictable future circumstances.[1] POLST can build on an advance directive but can also function in the absence of an advance directive. If the individual lacks capacity, a surrogate can engage in the conversation and the consent process that forms the basis of the POLST process. The challenges that patients, families and their healthcare professionals face at the end of life can be daunting. Caring and sensitive communication can elicit patients’ wishes which can then be documented in an advance directive. To put these preferences into actionable orders requires an additional tool, the POLST form. Healthcare professionals and their organizations can overcome the myriad barriers to communication across systems of care by developing a POLST program, creating a method that respects some of the most deeply held values of patients.[7]
In Massachusetts where I live you can find POLST here.  In California, where my mom lives it’s here. A map with state-by-state links is here.
Once decisions are made, communication can be tricky. Will the decisions be available at the point of care when the decisions are important? Some people’s documents are in one medical record, some in many. Some people send the documents to their children or their proxies. Some people tell everyone they can think of and give them copies of the documents. My mom and I were advised to tape the documents to the refrigerator or inside of the front door so the EMT’s would see them.
My Health Care Wishes is an app from the American Bar Association to manage and store your Advanced Care Plan documents including Advanced Directives, DNR orders, POLST, and Anatomical Gift.
Making decisions is necessary, but not sufficient. They must be communicated.  What experience have you had with this challenge?

Personal risk management – When s***t happens

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

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Quality of Life for People at the Center of Care

By | Caregiver, ePatient, Family man | No Comments

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

By | Advocate, Caregiver, Consumer, ePatient, Informaticist, Uncategorized | One Comment

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

By | Caregiver, Consumer, ePatient | No Comments

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): Read More

What do Caregivers need to manage health?

By | Advocate, Caregiver, Consumer, ePatient | No Comments
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

By | Caregiver, Clinician, Family man | One Comment
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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