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 melanoma 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. Read More
I wish my partner would carry his load. How do I get my kid to clean his room? She never cooks! How do I get her to talk to me? People in relationships complain and scold – expecting the other person to change and do whatever. Makes me cranky. Relationships are a two-way street in a setting with values, habits, and pressures. My kids once gave me a button for my hat: Cuz I’m the Dad. That’s Why! I have been resoundingly unsuccessful over 60+ years getting someone else to change at pretty much anything. Read More
I first thought about care partners 20 some years ago when my oldest son invited me to spend a few hours with his team heading to Zimbabwe for development aid work. “Talk to us about health, Pop. What do we need to know?” I remember telling them “keep it zipped up” and “buddy up with a health partner. The health partner commits to sticking with you if you get sick, come hell or high water. Let’s buddy up now” Six months later, my wife and I received a letter (before email) from Zimbabwe after we hadn’t heard from our son in 2 months. She wrote, “I am your son’s health partner. He’s OK. He got malaria and just got out of the hospital. I wanted to let you know”
Today, as I advocate for care partners, I wonder, “What if my son hadn’t had a health partner?” What happens to all these people who don’t have care partners? They are alone.
Ecclesiastes 4:10 – For if they fall, the one will lift up his fellow; but woe to him who is alone when he falls, and doesn’t have another to lift him up.
This week, Keren Landin, a scientist at Tuft’s, opened my eyes to social networks. Read this book, Connected, by her mentor or watch this YouTube TED Talk. The good news: almost everyone is connected to someone. Key words: almost and someone. To me that means there are still those with no one and sometimes someone doesn’t include a caregiver or care partner. Read More
As I learn more about and am sought out more as an expert in patient engagement, empowerment, and activation, I struggle to respond to the health-system centric definitions given by people thinking they are patient-centric or want to become patient centric. Stuff like, ‘How do we make patients feel like they were included in decision-making. I say, “wait a minute, think of it as if you were the guest in patients’ health care journeys.”
I first thought about being the guest in someone’s health care journey 25 years ago when I worked with my sister-in-law, Peggy Boland, a staff nurse in an Intensive Care Unit in Cobleskill, NY. She inspired and taught me much. She would knock on the doorway and ask if she could come in, even if the patient was unconscious. She’s say, “I’m going to turn you now. Ok with you?” She’d greet every person who came into a space she was in. She respected thresholds and personal space. A very busy person, caring for many people, she’d ask, “Is there anything I can do for you?” and do it or say, “I’ll be back in x minutes and do that.” She always made it her business to know family members and find out who would be the care partner in the ICU and at home. She included them in all activities, teaching how to help move, feed, and toilet the patient. “It’s good for you to know this, it’ll be easier than this when you get home, but harder than before you came in. Any questions?” She was proactively curious and helpful. She explained and taught all the time. At the beginning of each shift Peggy would meet with the patient and care partner, “Here’s what I have on my list to accomplish today. What’s on your list?” Then, “Ok, let’s do this, at that time.” Collaborative care planning. Read More
Aristophanes tells a creation myth that places humans of all three genders (androgynous, male, and female) in a primeval state of eternal bliss. However, we grew insolent in our blissful state and refused to properly honor the gods (and even tried to pursue them in their mountainous home). As punishment, we were split in two. Those with a “male” nature (the Children of the Sun) became homosexual men; those with a “female” nature (the Children of the Earth) became Lesbians; and the androgynes (Children of the Moon) became heterosexuals. Navels are the souvenirs of the operation we all went through in being divided from our beloved other half. The myth warns humanity to be careful in always honoring the gods (especially Eros) or we will be hewn in two once more, leaving us to hop around on just one leg. Part of properly honoring Eros is to search for and find our lost half, to be restored to our natural state of bliss. (Thanks to Josh for pointing me here).
My cousin, a Child of the Earth, married her partner of 16 years yesterday. Celebrating were children of earth, moon, and sun. Open, legal, honored. My dad was a Child of the Sun, in the closet to his death 42 years ago. He was present through me, having a blast – and honored.
- Routine physical
- New acute issue
- Follow-up for an acute issue
- Follow-up for a chronic condition
- Current meds – prescribed by anyone plus any not prescribed (over-the-counter). Note if they’re taken as prescribed, any questions about the meds, any effects that cause notice. If you can, bring the medications in their containers, just in case.
- All members of the health team: medical and non-medical.
- Anything medical or health that has occurred since the last visit with this clinic or clinician.
- Questions that come up in prep