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. More
- Family man
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!
I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. More
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! More
Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully. All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed. Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.
Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! More
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? More
Advocate, Caregiver, Consumer, ePatient, Family man, Nurse, Uncategorized adherence, Best health, care planning, caregivers, engagement, Exercise, goals, habits, health partners, health team, learning, mindfulness, relationships, Rest 1
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. More
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!
Advocate, Caregiver, ePatient, Family man, Informaticist, Leader, Nurse, Researcher Advocates, Behavioral Health, Best health, care planning, caregivers, Data, ePatient, evidence, health literacy, health team, innovation, leadership, learning, mindfulness, PCORI, shared decision making 1
I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.
I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss. I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. More