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!

Thoughts on FATIgue

Exploit the relative dry spots in the wet blanket of fatigue.

Sadness and fatigue are kissing cousins.

So are chronic illness and fatigue.

Close your eyes, give in to fatigue.

When fatigued, turn off the news.

Passion finds and expands the cracks in fatigue.

Bone-tired fatigue? Take 2 deep breaths. Move something, anything.

Belly laughs exhaust fatigue.

Trump fatigue. #IamAMuslim.

A lethal stew: worry, annoyance, bitterness, and fatigue.

Fatigued? Love yourself. Whatever you do today is enough.

Fatigue loves hugs.

Superpower: Opening our hearts

I’m scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren’t for others – all sorts of others. Feelings of injustice can power so much. I don’t pretend to understand all the righteousness, anger, and meanness that erupt when disappointment builds. But it feels as familiar as the human condition throughout the planet and over the ages. It’s like earthquakes from fracking.  I’m thankful that my mother, a Holocaust survivor, is no longer alive. She would be apoplectic and inconsolable.  What’s going to happen now? How should I act? As when grieving, I will mindfully minimize controllable stress – exercise, rest, listen to and play more music, spend more time with friends and family. I will continue to give thanks for all I have in my first world life. I will continue to pursue my passion for maximizing the experience of people at the center of care. I pray for the physical and spiritual strength to speak up, stand up, and act when the moments seems right. I’ll need strength to take the high road in this low road time. More than anything I’ll pray for unexpected open hearts. The community needs it. Our grandchildren need it.  The unborn need it. Onward.

Experiences, experiments, reflection, action

This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

Last Post, New Year

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Another threshold

My long-time friend, Glen, died last week. The first thing Glen and I  did together in Detroit, 1969 was to go into elevators and face the back to freak people out and then we got stoned. Glen helped my wife and I set the poles (trees) in the house  we built in West Virginia.  He and his wife had wanted us to move to Maine and live with them, but it was too cold for us. Glen died of brain cancer. His children took care of him for the last six weeks of his life in his home. Not a nurse among them. Continue reading “Another threshold”

Gratitude

Silent gratitude isn’t much use to anyone. ~ GB Stern
It can be tough to feel gratitude in the face of adversity. Yet where does dignity and strength lie except with gratitude? Stress, adversity, pain, grief are not solid entities.  Rather, they cast a heavy shadow on the variety of life. They demand attention, but are not all. This week, I feel stress, pain, and grief as I prepare to leave my wonderful team at work. I feel grief, because I will miss the struggles,successes, and mutual growth we have experienced together.  I am grateful for the team’s counsel, support, and persistence. I’m grateful for the opportunity to have done good work together. Gratitude is a magic lever of best health.  Here’s to best health for all. Thanks team.

Belonging – a matter of perception

During the inevitable ups and downs of life, I feel better when I belong. The pointy end of illness, loss, unintended change, stress, can be softened by belonging. Belonging to a family, team, community. What is this feeling of belonging? Being with family, comrades, teammates, cronies, neighbors. My wife and I are visiting old friends.  Old friends know the good, the bad,and the ugly and still like you and want to be with you. They have been with you through it all. Hence, old friends. Our neighbors look out for us, they have our back, literally. We belong. Belonging fuels a positive narrative that empowers me. I can take risks, I can survive mistakes, I can recover, I can feel better, I can find some peace when I belong.
Belonging feeds itself. To belong, I need to be a family member, a teammate, a neighbor. It’s an investment with some risk and some return. Belonging has an open heart. Paradoxically, an open heart is risky with the possibility of huge return and huge hurt. Yet a better risk than Powerball.  Turning a negative narrative into a positive narrative increases belonging – it’s a superpower. It’s a matter of perception. It’s a magic lever of best health.

Finite disappointment, infinite hope

“We must accept finite disappointment, but never lose infinite hope.”― Martin Luther King, Jr.

Mutual disappointment can  bring out our best selves or worst selves – disappointment in a lover, friend, colleague, hero, business associate, health team member. Underwhelmed by expected results -> disappointment.  No disappointment without high hopes. Disappointment drains my immune system and fills my gut like sucking air out of a large balloon. I want to keep the best imprint in my mind of my disappointment partner. I need my best self to have that kind of vision. More than one friend has called me a pathological optimist. My funky immune system can still fire that optimism. Not without cost. My family and friends provide more fuel. Thank you lord. May you all find your best selves when tripping over disappointment. Stay strong. Love yourselves. It’s a magic lever for best health.

Grief Subsides, Inch by Inch

I’m reading Scott Simon’s book, Unforgettable. A son, a mother, lessons of a lifetime. Beautifully written and so close to home. Scott Simon’s book resonates for me. It’s been four months since my mom died. Like Scott Simon, I, too, laid next to my mom in her bed telling stories. Before dying I was grossed out at the idea of laying in bed next to her. Now I treasure those moments. I feel her loss everyday.  Actually, it’s almost every day now, not every, every day. I resent that it’s not every day. Last November I was so upset that the 11th anniversary of my boy, Mike’s death passed without me remembering. I cherish the bittersweet sadness  and the exquisitely tender spots of these memories. What have I become when I forget those who color my tapestry? Yet I am recovering. Very slowly regaining  my strength and my center. The surrealness of loss and grief subsides inch by inch. Thank god. I couldn’t stay floating in that ever-deepening well of grief. Grief is again becoming a quirky, intriguing  companion. Oh ma, where are you now? Do you have more stories for me? I have so many for you.