Leaning Tower of Babel – Give me my Damn Data?

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!

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

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

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

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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