Coalition for Compassionate Care of California


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).

  1. 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.
  2. 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.
  3. 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.
  4. 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!!”
  5. 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!

Tales of Woe

From my memorable quotes pile:

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”

Personal Health Goals

 

#IamAMuslim
Your goal needs to be realistic and worthy

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”

4-5 Hours a Week & $0 to Invest

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”

Three Words for the Year

CareGiving.com is sponsoring Note to Ourselves For 2016 and Three Words for 2017

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

Re-calibrating – Finding Balance

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.

Recommit for the New Year

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)

  1. To understand and support each other
  2. To balance workload and capacity
  3. To achieve the best outcomes
  4. To communicate effectively during transitions of care
  5. 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”

Person-Centered #CarePlanning – What Data?

More about person-centered #CarePlanning. (If you missed my first post go here)

Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.

In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

#CarePlanning focuses on the whatWhat are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?  Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example,  between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added).  Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. Continue reading “Person-Centered #CarePlanning – What Data?”

#CarePlanning – a Mission From God

house-wvMy wife and I built a house together – the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling.  Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.

No wonder that a person’s health team struggles to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

Let’s focus on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings? Continue reading “#CarePlanning – a Mission From God”

Giving Thanks

thanksI’m thankful for my superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.

I’m thankful that I was born a  white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.

I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.

I’m thankful for my extended family, characters all.

I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.

I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.

I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.

I’m thankful for my grandsons – OMG, what can I say?! Continue reading “Giving Thanks”