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!

Community Rocks

I’m preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I’m reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care planning and following documented preferences through end of life.  A group of people organized a region-wide initiative to elicit, understand, document, and honor a patient’s preferences about future medical care. As a result end of life preferences are a regular part of community conversation, documents became easier to understand and use, some electronic medical records facilitated access to choices, and following the choices became standard practice. In 2010 90% has a plan, 99% were available in the medical record, and 99.5% of the time treatment was consistent with preferences. (See the Journal of American Geriatrics Society).  Amazing! Continue reading “Community Rocks”

Interview: Danny on Urgent Care Radio

As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I’m best able to open the interview MP3 file with Music Player for Google Drive. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!

For those interested, here’s a link to my full 2016 Health Hats Report. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!

Decisions, Decisions, Decisions

Decisions, decisions, decisions. We face endless numbers of decisions during our health journeys. From the mundane, should I fast to lose weight? To the tedious, what statin should I take? To the heartbreak, should we do everything possible? Yesterday, after playing music, someone told us that he fasted to lose 20 pounds. How many weight loss discussions have we had in an endless number of settings. I can remember one time discussing it with my Primary Care doctor – no decision, no choice of action – just an observation that my weight had been steadily increasing over the years. My cholesterol is high, and my Dad died young of a heart attack (not from high cholesterol). I’ve taken six different statins. My Primary Care doc thinks the evidence is strong for me to take statins. We regularly change brand based on effects on my liver enzymes, cost, and insurance coverage.  A friend’s elder mother had major heart surgery. The cardiac surgeon reported success, she’s doing great – the blockage was successfully removed. She’s still in a coma, intubated. She’s never had end-of-life conversations, no advanced directives. Her husband will want to do everything possible. No decisions lead to a decision. Continue reading “Decisions, Decisions, Decisions”

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”

I Wasn’t Born with a Tattoo, Telling Me How Long I Have to Live

10p New Year’s night 2002: Mike called me. I’m numb on my right side. My heart screamed. My boy had a stage 4 melano2012-05-17-mike-porchma removed from his neck a year ago followed by lymph node removal and a course of Interferon. Go to the Emergency Department. The next day a metastasized brain tumor the size of a grape was removed. Soon he had a lung tumor the size of an orange removed. He called them Terrence (the brain tumor) and Caesar (the lung tumor). Once sufficiently recovered from the surgeries, he began treatment at the cancer center close to his college home. A team of me, my wife and the parents of his girlfriend (who lived near their college home) alternated accompanying Mike on his visits to the cancer center. Mike never felt that he had the information he needed.  They wouldn’t talk prognosis: Am I going to die?  They didn’t explain uncertainty: What does 5% chance of anything mean? I’m 26! They seemed to speak to us more than him. After a particularly frustrating session with the oncologist, I asked him if I could arranged a consultation in the cancer center near us. He agreed. I did. What a difference. Mike immediately bonded with the radiation oncologist. Let me speak with Mike alone. After an hour, Mike came out. I’m probably going to die, but there’s stuff we can try. Oh well, I wasn’t born with a tattoo on my ass telling me how long I had to live. He died November 18th, 2002. Continue reading “I Wasn’t Born with a Tattoo, Telling Me How Long I Have to Live”

Pocket Therapy for #Caregivers

My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family.  A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.

Elderly woman

Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home.  Now I realize that is selfish.  I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that.  Continue reading “Pocket Therapy for #Caregivers”

Leadership – The Gift That Keeps on Giving

I felt so empowered by the best boss ever, Jim Bulger, Executive Director of a managed care company.  After I had been Director of Quality Management for 3 months, I told Jim that I didn’t think we were moving along at the speed he wanted us to go. “What do you think we should do?” Jim asked.  “Frankly, I think we need to start with you.” OMG, what had I said?  Have I no filters?!! To my joy and consternation, Jim responded, “Ok, teach me. Every morning 7am, 30 minutes, your agenda.” I had to get my act together fast. Several years later I asking Jim why he had done that. “I would have been an idiot not to. I hired you, didn’t I?” This was a gift to me.  A gift of trust, a gift of leadership.  I’ve learned over the years to value this gift of leadership.

Leadership is a foundation stone of maximizing the experience of people at the center of care. It’s not sufficient, but it’s necessary. Many opportunities exist to steer the boat, set the tone, build trust, value contributions, empower, take care of each other – opportunities for leadership. You can lead an organization. You can lead a team. Leader can be in your title or not. You can lead for a moment or a career. There is no ultimate leader.  It’s a relative position – a relationship position.

My mom led her health team during end-of-life. She set the tone, admitted and expelled team members. She set the culture. Once you were admitted to her team she listened to and empowered. It worked well. It’s an art as a leader to pull back and let others lead. She chose to lead. Continue reading “Leadership – The Gift That Keeps on Giving”

AACH: Communication and Relationships

I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief. The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: We have a lot to learn. Especially about patient centeredness. Most exciting for me was a presentation by Sharon Schindler Rising, a nurse midwife, talking about Centering Groups – facilitated groups of 6-10 young moms/couples preparing for the impending birth of a child. A wonderful example of people-centered design with participants directing much of the flow of the monthly small groups. Professionals and services came to them. Groups often kept meeting on their own after the children reach one year old, sometimes for 8-10 years. New groups have been starting for decades. Evidence over that time showed significant increase in proportion of pregnancies going to full term and decrease in the proportion of low birth weight babies. One sad piece of the presentation was the description of the barrier caused by the advent of the electronic health record. One participant-generated practice had been for moms and dads to enter their own health data into the paper record: instant empowerment!  Not so with electronic record. People could no longer enter their own data into the health record. Shadow records had to be created. Lord, I was crushed when I heard this. I participated in several subsequent discussions about the infrastructure and skill set that would be needed to spread the Centering Group model to other settings. Instant learning!! Continue reading “AACH: Communication and Relationships”

A caregiver is [not] a caregiver, is [not] a caregiver

When my mother was dying I was a long distance caregiver.  My mom made her own decisions, shared them with us, sought advice from me, asking me to research meds and treatments, wanted help with scheduling, wanted me to attend some of her appointments with her (mostly by phone) and gave me access to her electronic health record. Our family had open and dynamic communication. I was the health coordinator, my older sister helped manage business, my younger sister was her companion. These roles evolved over the years and solidified as our mom declined. Continue reading “A caregiver is [not] a caregiver, is [not] a caregiver”