I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Continue reading “Precision Prism”
The Washington Post reported this week about a study done at the Mayo Clinic where 20% of patients seeking second opinions were completely misdiagnosed, 12% received a correct diagnosis, and the rest (67%) got partially correct diagnoses. Continue reading “Misdiagnosis – How can Patients Help Doctors?”
I wrote a blog post a couple of weeks ago for the Society of Participatory Medicine about Service Agreements Among Friends and Colleagues. My point was that service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. I shared my post with my colleagues at Involution Studios while we discussed the future of Precision Medicine. What if we had service agreements with members of our health team? Professionals and non-professionals. And ourselves. Could we think of care plans as service agreements? Person-centered care planning focuses on the goals of the person on the health journey. Who’s going to do what to get there? When? How will these goals and activities be tracked and shared across time and settings? The service agreement is the who’s doing what to get there and when are they going to do it? If my goal is to progress as slowly as possible with my Multiple Sclerosis, then my part of the service agreement is that I will: Continue reading “Service Agreements for Me and My Health Team”
I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations).
- The new insight: In Prognosticating for Adverse Outcomes Using Palliative Care with Daniel Hoefer, MD, I learned that we can predict probable outcomes for elderly persons with few reserves facing surgery and hospitalization. They will be likely to have cognitive and functional decline and go into a nursing home. The hip replacement may be successful but without an acceptable quality of life. Intriguing presentation.
- Personal stories of individuals, caregivers, and clinicians filled every nook. Two twenty-somethings, Charlie and Devon, spoke about their experience with serious chronic illnesses since birth. One had just had the first full year of unhospitalized life in her 26 years. Danielle, a caregiving mother, shared stories about her 10-year-old daughter’s journey born with one ventricle. Surgery after surgery, complication after complication, traveling back and forth from Arizona and Boston for care. Sandy Chen Stokes, RN, MSN received an award for her work with the Chinese American community. This community has the lowest rate of hospice use of any group in the US. The Chines American Coalition for Compassionate Care represents 1300 people in 80 groups around the country. A force of nature! I wish I had a means of recording these stories and sharing them. I’ll be collaborating with the Patient Voice Institute to make this easier.
- I spoke with Michael Fratkin, MD, Director, Resolution Care, about a virtual immersive learning tool being developed by Lahey Clinic and Wellesley Partners to teach physicians to be more skilled at advanced care planning. He advised me that the support of clinical leadership, alignment with daily clinic workflow, and interest of the physicians were needed for any teaching tool to be effective.
- I’m eager to continue communicating with my fellow ePatient Scholars. Elizabeth has MS, is quadriplegic, and whispers through a headset into a speaker. “I’m a world-class emailer!!”
- Finally, I received reinforcement from my ePatient mates to focus some of my work on tools for goal setting and measurement of goal concordant care (Our care follows our preferences).
This week I’m headed to DC to complete review of PCORI Palliative Care funding requests. Onward!
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? Continue reading “Tales of Woe”
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Continue reading “Personal Health Goals”
When you have 4 to 5 hours a week and $0 to invest, how do you move something an inch that needs to move 100 miles? I’m talking about the unhealthy mess of our US healthcare system. Most would agree that it’s a long complicated journey to health for our system. As clinicians, caregivers, or advocates we want to make a difference and alter the healthcare system for the better. So where do we invest our time, energy, and money? It’s sobering to realize the imbalance here – it takes a lot to participate in any kind of health journey – personal, team or system. We still need to take care of ourselves and our loved ones, do our day jobs, and wash the dishes. We can be pretty unrealistic – our eyes are bigger than our stomachs. Our desire is greater than our capabilities.
So, with 4-5 hours a week and $0 the best we can do is have a specific goal, assemble or join a team that’s fun to work with, make a plan, execute it, check if it’s doing what we want it to do, adjust as needed, and keep at it. And build bridges to people trying to accomplish something similar – learn from each other. It’s the same for caregivers, nurse managers, patient and peer advocates – anyone without deep pockets. It’s some variation of a few hours a week and $little to invest. Continue reading “4-5 Hours a Week & $0 to Invest”
My Note to Myself: Continue to do what I’m doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team. Stick to my health and safety routine every day. Mentor bright young minds. Have fun when collaborating to do good work.
Three words: Balance. Caregivers. Onward.
Balance – Family, exercise, music, work. In that order
Caregivers – I do the work I do for caregivers – Honor the caregivers, help the helpers. We couldn’t exist without them.
Onward – Moving stuff an inch that has 10 miles to go, requires one foot in front of the other.
Happy New Year!!! Here we go – weeeee
So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.
I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance. I feel it acutely. I find it easier to be active attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space. More optimistic, better spirit. Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.
At year-end, I’m still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities)
- To understand and support each other
- To balance workload and capacity
- To achieve the best outcomes
- To communicate effectively during transitions of care
- To learn and share what works
These days more people in the health industrial complex listen to the voice of the patient, caregiver, and those others who care and serve. But the listening isn’t consistent. And the doing something sensible is sporadic and not often widespread. It’s gone from bleeding edge to just edge. I’m consumed with learning how to move this scary disappointing healthcare system an inch even though it needs to move 10 miles. I’m satisfied with the inch. The 10 miles is too much to fathom. I’m more aware than ever of having progressive conditions – MS and life. There’s a limit to what I can do. Continue reading “Recommit for the New Year”