Tension between rights and safety

My mom is failing – pancreatic cancer. I’m struggling with the balance between her desires and her safety.  I firmly believe in Empowered, Equipped, Engaged, Enabled individuals on the health journey: e-patients as described by the Society for Participatory Medicine.  I also believe in Using Power Honestly, Wisely, and Respectfully as written in the Advocates Way of Advocates, Inc.
So when my mom says she doesn’t need help, yet I see that she’s unsteady, has had several near misses – almost falling, wants to stay in her home, and has varying degrees of self-awareness, mental abilities, I’m concerned about her safety and ability to make a safe decision. Thankfully, we avoided disaster, after coordinating with several people to be with her and offer the same feedback: You need 24/7 help. In a period of clarity she agreed and now feels relieved.
This tension between rights, dignity, and safety repeats itself everywhere. I experienced it as a parent, as a nurse, as a patient myself, and as a caregiver. I didn’t let my grandson run across the street, rather holding his hand and instructed him in good crossing habits. For ourselves and those with whom we share the health journey, we can acknowledge the tension with mindfulness and respect and get help maintaining that balance.

Fear on the Health Journey

Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.

Comedy Improv and the Health Journey

I’ve written before about music improv and the health journey.  Today I’m inspired by Tina Fey.  She says:

The first rule of improvisation is AGREE. Always agree and SAY YES. When you’re improvising, this means you are required to agree with whatever your partner has created. For the health journey this means accept what is as soon as you can. “This sucks, why me” is real and necessary, but agree/accept allows you to move on and deal with it.
 
The second rule of improvisation is not only to say yes, but YES, AND. You are supposed to agree and then add something of your own. For the health journey this means take charge. Wherever you’re at, build a team, seek information, get help.

The next rule is MAKE STATEMENTS. This is a positive way of saying “Don’t ask questions all the time.” If we’re in a scene and I say, “Who are you? Where are we? What are we doing here? What’s in that box?” I’m putting pressure on you to come up with all the answers.In other words: Whatever the problem, be part of the solution. Don’t just sit around raising questions and pointing out obstacles. This means try stuff.  Follow the advice of your team or don’t – follow your nose.  But try stuff to feel better.

 
THERE ARE NO MISTAKES, only opportunities. For the health It’s all an experiment.  Professionals give advice from the knowledge they have about populations – groups of people.  You are one person. You are the expert about yourself. If whatever you do works-congratulations.  Write it down. When x happens and I do y, I feel better. If it doesn’t work, write that down too and try something else.  If your working on one thing and it doesn’t get better, try something else.  
If you’re tired of trying,  listen to Robin Williams, Mel Brooks, Jonathan Winters, Tina Fey or whoever makes you laugh. Share who makes you laugh.
 
Have a good week.

Journaling – Experimenting

Journaling came up several times this week. Nurse leaders in a Leadership Academy spoke about change efforts they were making at work to increase involvement of patients, reducing noise in the hospital, trying to help their teams work better together. I spoke with someone facing increased symptoms also receiving more and more friendly, loving advice about treating those symptoms from professionals, friends and acquaintances. Each of these people could benefit from journaling. Life is a continuous experiment. Keep trying stuff – some works, some doesn’t. I find it helps to keep track in relative real-time. Going back to see where I’ve come with information to pass on to colleagues and caregivers. Journaling is writing it down – on paper or electronically. If you hadn’t noticed, this blog is a very public way for me to journal.  So, with the nurse leaders, journaling is taking a moment periodically, every day or week, to jot down emotions, activities, responses, movement, barriers. For the person at the center of care, jot down symptoms, what makes it better, what makes it worse, what you tried, what was suggested that you didn’t try, what would you like to try? Check out DayOne Journaling if you have an Apple device.  Paper is always good, too. If you are a caregiver or friend of the person at the center, offer to keep the journal for them. It’s a bridge builder.

Advocacy

I went to my primary care doc last week for some blood work. The best practice means of checking a person’s identity is for the professional drawing the specimen to ask a person their name and date of birth and confirm that these are the same as the order/prescription and label. The technologist did not. When I suggested that she follow this practice, she was clearly annoyed with me.  I spoke with someone yesterday who was in the middle of an ultrasound and the technologist asked, “Oh, are youxxxx?  I forgot to check.”  These occurrences are low risk (unless you need another stick because the wrong blood tubeswere used or the resulting diagnosis is really for someone else). But it’s a good habit to expect confirmation of identity when somethingis done to you.

I also have been participating in my Town Disability Commission as a citizen volunteer. I’d like to be appointed as a member.  I’ve found that the selection process lacks transparency-every citizen does not have an equal chance to be considered or selected.
Both these stories reflect on the challenge of advocacy.  How do we stick up for ourselves among well-meaning people who don’t follow best practice. I find it difficult to advocate. I don’t want to be a pain. I’m a bridge builder, not a fighter. I’m at my best when I focus on the prize.  In the first example, I tell the lab person that confirming identity is critical – to me and to her. What a shame (or how devastating) in the rare instances its wrong. For the Town, being sure that the town follows its published practice, that all citizens have equal opportunity to take part, and that access for the disabled in improved. How far do I go?  The most passionate advocates seem to have been burned by a bad practice. I want to avoid that for me and mine.