Children of the Sun, Earth, and Moon

 

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.

Who’s your health co-pilot?

As an e-patient advocate, I passionately believe in each of us being the pilot for our own health flight. So many legs in that health flight. While its a non stop flight for each of us from birth to death, it’s actually a journey with innumerable hops. As I re-enter my own health journey with energy now for others’ journeys, I’m struck by the shifting prominence of health team members. Sometimes we need a health team member to be our co-pilot, someone to take the wheel, read the map, or pave the way. A friend this week had an unwelcome and unusual constellation of symptoms – disconcerting, disruptive, freaky. This friend needs a co-pilot – a doctor to advise, diagnose, refer, integrate results. I had sudden acute abdominal pain.  I also needed a co-pilot. As my mom was dying we needed several co-pilots: a hospice nurse to manage symptoms and equipment; a friend to manage logistics of care; and a mid-wife of dying to manage personal care and spiritual needs. Another friend is trying to lose weight. His co-pilot is a trainer. Ultimately, you can’t always be a solo pilot. Recognizing the need for a co-pilot, finding one, and trusting her/him is a magic lever of best health.

Leadership in Family Health Crises

Sudden, severe illness or protracted undefined illness likely causes a family health crisis. Families in health crisis start from a position of acute stress yet have much to do. For a frame. consider that physical health starts with spiritual health, then mental, then physical.  For the family spirit is morale, mission, purpose, direction. Mental health is leadership. Often a family in crisis operates in survival mode and lacks spirit and purpose. Family success in managing the health crisis depends on leadership working to improve spirit, defining and clarifying purpose, and aligning direction.  The challenge multiplies when the family member with sudden or undefined illness has a family leadership role. Families in health crisis need support from their health team and community to supply a temporary exoskeleton of leadership – acting as a guide on a path out of crisis, finding and advocating for resources, providing kindness, listening, and caring. Do you think your team or your community does or could support your family when in crisis? Health crises are guaranteed to happen if you live long enough. If you are a health team member or provider, do you or your team know how to assess the leadership needs of the people at the center of the crisis? Do you have a crisis plan that can be put in place to act as temporary family leaders or to support those stepping up as temporary family leaders?  Families and their health teams need crisis plans.

Should you bring someone with you to your next doctor’s appointment?

Should you bring someone with you to your next doctor’s appointment? If you’re asking, the answer is yes.  

How do you be the best companion if you’re asked? Prep in advance, listen, record, ask questions. Know why you’re going? That means both What does the person want to accomplish during the appointment? and Why are you accompanying them? There are many types of visits.  Here are 4:
  1. Routine physical 
  2. New acute issue
  3. Follow-up for an acute issue
  4. Follow-up for a chronic condition
Prep in advance for all of them if you can. Bring or make lists:
  • 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
During any visit, listen and record. This is active listening-make sure you understand. Repeat back what you hear. Fill in blanks of information if you can. Ask if you can record the session.  Use your phone to tape if you have one or bring a tape machine. Ask the person with the appointment if they understand and if they have any questions. Ask for a copy of the clinician’s notes.  If someone brings up HIPAA as a reason not share information, they have it backwards. HIPAA mandates the sharing of health information with the person with the appointment.
As soon after the appointment as you can, go over what happened and what you both learned. Memory of lots of details can fade quickly in the best of circumstances.
Going to the doctors with someone is a gift.

Belonging to your health team

Belonging to your health team. Seems oxymoronic. Of course you belong to your health team. There is no health team without you. Yet sometimes people feel out of control, not accepted by their team. Maybe it’s because it’s not their team. Professionals and caregivers sometimes act as if or really feel that they are the team, separate from the people they serve. Today I received an e-mail report from a friend describing the meetings of the team caring for her husband with ALS (Lou Gehrig’s disease). The hope, the optimism, the details of how to manage, the welcoming, warmed my heart. The key is the welcoming across a threshold. Before the professionals weren’t part of their team. After they were. Just like that. Same day, I received an email describing the separation, frustration, lack of communication, of a friend caring for her husband who had surgery. Although the outcome was good – successful surgery – she seemed glad to be away from those professionals. They were never part of the team. How do we as ePatients welcome professionals onto our team?  How do professionals acknowledge that they have joined ePatients’ teams?

Test driving and consent to share

This health journey I’m on can be quite a ride. Tomorrow I’ll test drive a new neurologist. They want me to bring certain information from my previous neurologist: Recent notes, medications, MRIs on CD. They can’t just go get it. Their system doesn’t talk with the previous neurologists’ system. I know I’m going to have to sign something that tells me how they will keep my personal health information (PHI) private. What does that even mean? The principle is: Individuals should be provided a reasonable opportunity and capability to make informed decisions about the collection, use, and disclosure of their individually identifiable health information. I should be able to decide if, when, or what information I want shared about me, with whom. The relevant law is the HIPAA Privacy Rule. The Privacy rule defers to covered entities (providers of care) with regard to the decision of whether to obtain an individual’s consent in order to use or disclose PHI for treatment, payment, and health care operations purposes, and with regard to the content of the consent and the manner of obtaining it. 45 C.F.R. § 164.506(b). Here’s a link to more information. I think it says that the covered entity can decide whether or not to get my consent. And what isn’t treatment, payment, and health care operations?

I don’t really care who knows anything about me. I’ve always just signed whatever is put in front of me. After all I write a blog about health and talk about my health openly.  It might as well be on a billboard. But what if I did care and didn’t want to sign? Can I say no? Will anything about my care change if I say no? What I do care about is that my wife – my health partner – and all the members of my health team have access to all the same information I can have access to. How do I pave the way for that? We’ll see what happens tomorrow.

Honoring and aligning silos

Teaching in a nursing leadership academy this week about acting as a change agent or change catalyst in an organization or team. Common theme for the participants – frustration overcoming silos, working across silos, aligning silos – silos, silos, silos. As a family member, as a nurse, as a band member, as a person with MS, as a team leader, I respect and value silos. Defined boundaries – them and us – helps with identity, internal effectiveness and growth, focus, controlled expertise, and protection. At the same time I’m the health hats guy – proud of my many hats, teams, identities. I try to connect dots, align, reach across, welcome, join, participate. I’m anti-silo. Quite a tension. Who doesn’t deal with this challenge?  How do we value silos and overcome them? Appreciation, trust and alignment.

 
First, appreciate other silos as reservoirs of ability, history, perspective, and value. Next, be trustworthy to other silos – share, deliver, respect. Trust in each other’s strength, abilities, integrity. Finally, align. Clarify joint mission – together we’re trying to do something – better life, spread knowledge, entertain, growth and development, best health. So if we know what we’re trying to do together, if we act in a trustworthy way, and appreciate each other’s value, then we can honor and overcome silos. A magic lever of best health.

A Powerful Union: Relationships within Health Teams

The relationship between health team members, especially people and their clinicians and caregivers, frequently arises as a topic of this blog. Let me share with you one of the values of Advocates.  I work for Advocates as VP of Quality.  We express our values in Advocates Way. Advocates provides person-centered, community-based support services to individuals and families with mental illness, addictions, developmental disabilities, brain injury, and other challenges in living.

A Powerful Union

We strive to foster relationships in which the person feels understood, is respected as an expert about his or her own life, and takes a leading role in all decision-making and planning that could affect that person’s life.
 
We see each person we serve as a “guide” whose experience, wisdom and perspective are unique and vital to our mutual success.  When a person’s expertise about her or his own life is combined with our knowledge and resources in an atmosphere of hope, collaboration and mutual respect, truly marvelous things can happen.
 
We encourage and support people to take charge of their own lives. We do this even when the path a person chooses includes an element of risk and decisions which may cause us concern.  We believe that all experiences – successes and challenges alike – result in growth, learning, and change.
 
Isn’t that sweet! A constant challenge to live.

Health Partners

Many years ago my wife and I got a letter from Zimbabwe: Dear Mr. and Mrs., I’m your son’s health partner.  He’s fine now, but he had malaria, was in the hospital for several weeks, and almost died. Our son had gone to Zimbabwe as a development aide worker.  During his team’s training, my son asked me to teach a health unit for them. I was a nurse and had been a paramedic.  I essentially suggested they keep it zipped, know where their food and water came from and had them select a health partner in the team.  The idea was that if anything should happen, health-wise, they would have someone who would stick with them as they got the treatment and recovery they needed in this unfamiliar place.  I’m so glad I did.  I’m reminded as many of have children leaving home now for college, do they have a health partner? Who will stick with them if they get sick? Navigating health care when you feel like crap is tough at best. Identifying a health partner before it’s really needed is the key. I don’t think of it much myself. My wife is my health partner.  My sister and my kids will step in if need be. I’m blessed.  Who is your health partner?  Who are your children’s health partners?

Dialogue

Let me tell you about our family’s experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike’s death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and  I lived in Albany, and my other sons lived elsewhere. Mike’s girlfriend’s parents (I’ll call them in-laws here – it’s shorter) also lived in Buffalo. We struggled with logistics, emotions, practicalities, money, clinicians, treatment, life. One day when my wife and I were in Buffalo at the in-law’s we realized we all cared about Mike and needed to coordinate, support, communicate regularly. We also realized that while Mike was the central, principal person, the whole expanded family was hugely impacted and impactful. We set up a weekly conference call-this was before smart phones, Skype, other media. During these calls we addressed everything: pain relief, bowel problems, transportation to appointments, where and whether to get a specific treatment, test results, which clinician, where Mike lived, fund raising, relationships among us, fear, grief, grief counseling, humor, location of and caregivers during Mike’s post surgical care, school, equipment, whether and when to start hospice, the weather (travel). While we didn’t include clinicians, we learned together more about what treatment was available and what kind of clinicians fit in with Mike’s outlook and our system. Found a radiation oncologist who especially fit in and connected with Mike and he became our lead clinician. We systematically went around to each person on the call, starting with Mike, everyone shared their issues, information, whatever. Everyone was heard, we got much better at active listening, we felt included, supported, loved. We knew what was going to be done during the week: assignments, appointments, travel. Sibs joined when possible. A moment for me was when Mike’s girlfriend was upset with me, because I told her mom the result of a test before she could tell her mom. It seems so small in the scheme of dying, but it helped set a tone, removed an annoying pebble in her shoe. These calls (and in person when possible) continued through to after Mike died. The day after he died, we went around the room, with all of both our family and the in-law family recounting how Mike died, where everyone was, how we came to the place of being together at that moment. Before he died, Mike told me that his last year was the best year of his life. He was in love and he was loved. Open dialogue amongst us made a difference. No unfinished business. The grief felt clean.  I’m telling you this story now because I attended a symposium yesterday sponsored by the Massachusetts Department of Mental Health about a treatment for psychoses from Finland being tested at Advocates, Inc. called Open Dialogue.  Once I get permission to share details with you from the presenter, Mary Olson, PhD, I will. It reminded me of our experience with Mike dying and beautifully reflected the values often spoken about at the Society for Participatory Medicine and in this blog. Open Dialogue – a magic lever for best health.  More to come.