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


By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader | One Comment
I went to my primary care doc last week for some blood work. The best practice means of checking a person’s identity is for the professional drawing the specimen to ask a person their name and date of birth and confirm that these are the same as the order/prescription and label. The technologist did not. When I suggested that she follow this practice, she was clearly annoyed with me.  I spoke with someone yesterday who was in the middle of an ultrasound and the technologist asked, “Oh, are youxxxx?  I forgot to check.”  These occurrences are low risk (unless you need another stick because the wrong blood tubeswere used or the resulting diagnosis is really for someone else). But it’s a good habit to expect confirmation of identity when somethingis done to you.

I also have been participating in my Town Disability Commission as a citizen volunteer. I’d like to be appointed as a member.  I’ve found that the selection process lacks transparency-every citizen does not have an equal chance to be considered or selected.
Both these stories reflect on the challenge of advocacy.  How do we stick up for ourselves among well-meaning people who don’t follow best practice. I find it difficult to advocate. I don’t want to be a pain. I’m a bridge builder, not a fighter. I’m at my best when I focus on the prize.  In the first example, I tell the lab person that confirming identity is critical – to me and to her. What a shame (or how devastating) in the rare instances its wrong. For the Town, being sure that the town follows its published practice, that all citizens have equal opportunity to take part, and that access for the disabled in improved. How far do I go?  The most passionate advocates seem to have been burned by a bad practice. I want to avoid that for me and mine.

Managing Pain

By | Caregiver, Clinician, Consumer, ePatient, Family man | No Comments
Several blog posts these past weeks on pain management. Read one here from Engage the Patient.  Everyone has pain.  Some are called stoic, some sensitive. I remember when my son, Mike, had a lung tumor removed.  Curled up in a fetal position, hardly able to breathe, he told a nurse that his pain was a 6!! A six?! How could that be? I was talking to someone this week, recently diagnosed with pancreatic cancer, about a new sensation in her abdomen – a pressure. As we explored the new sensation, she said, it’s not pain. It’s a pressure in the morning. It travels, one day here, the next day there in my abdomen. It doesn’t affect my life. It’s annoyingly noticeable. Gets better as the day progresses. I’ve found for myself, that becoming one with unpleasant, unwelcome, strange sensations helps me manage and not freak out too much. For me its neuropathy – electric, radiating tingles or zaps often in my hands and legs, sometimes elsewhere, lasting moments.  Seriously annoying, but doesn’t affect my life. Nowhere near as bad as a toothache. Acupuncture keeps it at bay, reducing intensity and frequency. It’s good to be intimately knowledgeable about pain and share that with your health team. What’s it like? How has it changed? What works to decrease it? What doesn’t? Some people welcome help understanding their pain better. Shouldn’t pain sensation, what helps and what doesn’t be core health information – included with medications, health team members, diagnoses, and procedures? I have found that people at the center of care get this, most health professionals and information technologists don’t. I’m sure they or their loved ones have pain too. What’s missing here?

Expanding Engagement and Capabilities of People at the Center

By | Advocate, Caregiver, Clinician, Consumer, ePatient | No Comments
Some people want someone else to be the leader in their health care journey. Others take offense if anyone even hints at taking that lead – with every stripe of variation in between. Same goes for using technology – some seek technology and use it, for others it’s not even in their universe of thought, some depend on team members to manage their technology.  Think [hearing] aides, apps, spreadsheets. For those who are health professionals or family caregivers how do we know where an individual lies on the continuum of engagement and capabilities and what do we do with what we learn with those persons whose team we are on? 

Health Affairs published a framework for engagement in February 2013. The levels of engagement are Consultation, Involvement, Partnership and Shared Leadership.  Seems like both ends of the continuum are left off: Apparently NOT involved on one end and Sole Leadership on the other.  Both ends are tough.  I say apparently not involved because no one could have asked, cognitive and language disconnects could be present, or there’s complete inability or wish to take part. Sole leadership by individuals is still largely outside the experience and frame of much of the health industrial complex. Completely taking charge either with or without professional consultation can be pretty foreign to many team members.
Using technology is similar. My grandson learned to use an iPad in 45 minutes when 2 years old.  My 87 year old mother is just now texting after having a cell phone for 5 years (she only turned it on when she wanted to make a call). Ma, I know you’re reading this 🙂
As I explore the possibilities and variation of the worlds of people at the center of care, I want a quick and simple assessment scale that professional and lay team members can use to gauge where the individual lies on the engagement continuum and once known, how can the team member best be helpful to that person – helpful maximizing health or helpful with movement along the continuum to increase control, increase decision-making, and increase tech capabilities?  Do any of my dear readers have experience with this? What helps us learn about engagement and capabilities and what helps us do something with what we learn?  Maybe one of you already have this down. If you do, does it help?

Caregivers Have Other Lives Too

By | Advocate, Caregiver, ePatient, Family man, Leader | No Comments
I’m amazed at what people are capable of. This week I met a nurse leader who manages a neonatal intensive care and transport unit while mothering 5 children (one of her own, 3 adopted and one foster) – I spilled into amazement when she couldn’t meet with me at a particular time because she had Rotary obligations. I was on an airplane and met someone who cared for her ailing, rapidly dying husband, was the sole family earner, with only spotty help from family. She was on her way to a short-term paying gig. I hear stories like this when I meet caregivers.  Caregivers have other lives too. Are all these people saints? They would all say, what else would I do? It’s done for love, sense of obligation, inertia, no choice, who knows. Still, 93 million caregivers in the US. As Don Berwick, candidate for governor of Massachusetts said to me recently, it’s by far the largest health care workforce in the country. Do you know the caregivers in your midst? They’re everywhere. It’s like walking with a cane-suddenly you see all the people with canes.
I’m reading a book, The 7 Habits of Highly Effective People by Stephen R. Covey. Some highly effective people are caregivers.  Some caregivers are highly effective people. Covey talks about delegation. Effective people delegate.  Effective caregivers delegate. Many people have a few minutes to help the helpers. Effective caregivers know how to delegate: shopping, laundry, errands, sitting, accompanying, cooking, cleaning, on and on. Really, though, most caregivers are stuck with caregiving. With no societal support, no help, no relief. If 1% of caregivers, 930,000 people, couldn’t caregive, Medicare and Medicaid would go broke. (At a conservative estimate of $5,000 per year in additional cost, that’s $4.65 BILLION per year). You policy wonks: what do we do now?  This number will only increase.

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?

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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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