Patient and Family Advocacy

Patient and Family Advisory Councils connect patients and family members with employees in the healthcare system. Members provide input on how to improve the patient and family experience in a specific area. PFAC is the shortened name for these groups. Patients and family members who have been caregivers for patients are called PFAs.

PFACs are a way for providers to gain viewpoints from the perspectives of those on the receiving end of care. Participating in patient and family advisory committees gives patients and family members the opportunity to become advocates for their own health care and that of others. It is also an opportunity to give back and stay involved in the health community.

I joined a PFAC oncological group in the spring of 2015. It focuses on any aspect of oncology and welcomes participants who have been affected by any kind of cancer as a patient or family member who has received care in the UW Health system. My understanding of what happens on more of a business level of health care has been deepened. Surveys are often used to gather and then aggregate information from PFAC members ahead of scheduled meetings. I have completed many. There usually is a guest presenter on a topic.

Truthfully, I often feel as though final decisions have already been made and the purpose of patient/family input is simply to agree with what is being presented. As a result, I often feel somewhat disagreeable when I say something different from what I think they want to hear. Yet, I’m not there to make them feel good and/or validate their work. I’m there to offer my honest feedback and to advocate for the best patient-centered care possible. I’ve also gleaned a few insights into possible options from which I could benefit. Those are added benefits to my participation.

I am one of two members in my group who receives care at a building outside of the hospital that offers cancer treatment in a smaller setting. I find smaller is much more personalized and this is the right choice for me. I am also the only member of the ENTIRE group who is under current treatment. It strikes me as odd. I would think there would be a higher need to recruit current patients for input when it’s THEIR CARE being discussed. My status gives me a unique perspective where I can lend my voice to what I currently experience and my observations.

I thought some readers might be interested in some of the topics we’ve discussed over the past four years. I do not feel I am violating any privacy policies by sharing in general terms. I will not refer to anyone by name. My purpose is to provide a glimpse into the world of Patient and Family Advisory Councils. Sure, I have some opinions and they are mine to share. I am confident you’ll know those when you read them.

The following are a few of the PFAC topics that have been discussed:

Clinical Trials

  • A speaker was brought in to present information with an accompanying PowerPoint. The presentation on clinical trials was largely informative. Time was spent providing feedback on the cancer center’s website dedicated to trials. Feedback was solicited on how to raise awareness of and participation in clinical trials, and discuss reasons why patients may not choose to be involved in them.
  • I perceived the hospital perspective was that patients often do not want to be involved in trials. I believe there are reasons that validate that perception. Personally, I would not choose to be involved in one if I may be in a group that is not receiving the strongest medicine available as compared to another group. It’s too big of a risk for me. Many trials are changing so all patients in a trial receive the drug being tested. If patients understand that, then participation may rise.
  • Trials have also become very specific because of targeted treatments. Often times, it’s the trial sponsors who have restrictions that exclude interested patients because patients do not fit a sponsor’s requirements for the ideal sick patient. Patients are too sick, not sick enough, or something else. Patients would like the opportunity to participate (and potentially greatly benefit), but they are told they cannot. In the end, it’s the sponsor rejecting the patient, not the other way around.

Chemotherapy Preparation

  • One evening, oncological pharmacists presented information on why patients wait so long for their chemotherapy drugs. There have been days I’ve waited three hours from the time after an office visit until my drug drips into my body. It takes considerable time to make chemotherapy for an infusion. Pharmacists can’t make it until the oncologist has released the order for it. This is dependent on the patient’s office visit and dictated by results from labs looking at blood counts and metabolic functions. Kidney function, white cell counts, liver enzymes, and other numbers or functions out of kilter could delay or cancel a treatment. Each drug is made specifically for a patient. Dosing is specific to a patient’s needs and once made it can’t be used on another patient if the intended patient is unable to use it. It expires after about twenty-four hours. Money is lost if it goes unused. My blood boils a bit at this economic consequence because in my world patient care outranks profit every single time. Hiring more pharmacists would lessen the time a patient has to wait. Patients would get what they need more quickly. An on-site facility to make the chemo would be helpful, but apparently this isn’t deemed essential. Again, financial factors are at the root of these decisions. My blood pressure can only climb because of them. Don’t mind me, I’m just a patient.

Genetics Clinics

  • On another evening, a presenter gave an overview of genetic counseling and progress in identifying genetic markers that increase a person’s cancer risk.
  • The benefits of DNA banking were shared. I was somewhat unimpressed as it seemed the biggest benefit would be to the company providing this service. DNA banking is an option available outside of genetic counseling. Many questions float around in my head concerning how my DNA would be used.

Appointment Scheduling

  • At first, this didn’t seem like a terribly pressing topic, certainly not one to take an entire PFAC meeting to discuss. But it did.
  • The chemotherapy managers and oncology directors were gathering input on which patients needed to be seen by oncologists and which patients could be seen more routinely by nurse practitioners. Who was considered urgent? I get good information and a slightly different perspective when I see my nurse practitioner, however, I will always prefer to see my oncologist over her. He has more expertise.
  • Other members in the group nodded their heads and quickly agreed that this was a great idea to see a nurse practitioner more frequently. It isn’t from my perspective. This is where my situation as a current patient is so important. Doesn’t every cancer patient think his or her care is urgent? I am just as urgent and as important as another patient. It seemed to me like some patients were being labeled as more valued than others. The thought was perhaps patients who were further out post-treatment could be seen by a nurse practitioner if they only came in once a year. Well, no, these patients need to be seen by an oncologist, too. Recurrence happens even when patients have passed a five-year cancer-free benchmark. I’ll say it again: the oncologist has more expertise. A nurse practitioner may miss something that an oncologist may notice.

New Clinic Design Planning

  • A new campus is being designed on the far-east side of Madison. An interior designer presented current design plans that were extremely comprehensive and detailed. I was impressed with what is being planned. The plans are patient-centered and inclusive to coordinate many aspects of care in one setting.
  • Input was sought after for any aspect of this clinic. I felt the designer presenting genuinely considered all comments were important whether they were about parking lot locations to what kind of treatment room options would be enjoyed or needed (open, semi-private, or private). I seemed like the lone voice expressing how important private treatment rooms were for patients. As a patient, I have intensely private discussions about my health with my treatment nurse while receiving treatment. I don’t want to share that information with others, nor do I want to hear their confidential conversations. HIPAA laws exist to protect patient health information. I expressed very strongly that privacy must be ensured in treatment areas. I was thankful someone agreed with me who had called in for the meeting. Even if privacy were not a concern, cancer patients have compromised immune systems and should not be sharing space with others or others’ family members who are sick and may or may not be showing symptoms of a virus.

The recommendation in my group is to serve in a PFAC group for five years and then make room for someone else. I don’t know how closely that guideline is followed; some members in the group have been there more than five years already. I do enjoy the other members who have been former patients or caregivers for family members. Everyone brings something different to the table. We volunteer our time because we feel we can make a difference. We all advocate for the same thing – the best care for patients.

Consider responding:

  • Have you ever advocated for change in your health care or that of a family member? How? What happened?

 

What’s at Your Core?

Everyone has core themes – themes that make you who you are. Identifying what these are as an individual is a huge part in understanding your identity. Core themes become part of a healing plan because when you know who you are, you know your strengths. Leaning into your strengths can lead to faster healing.

We should always align what we do with our core beliefs. It’s part of being well and being happy. We all need to live our truths and core values.

I hadn’t thought much about my themes other than I was a teacher, a friend, a daughter, and that kindness was really important to me until I was diagnosed in 2012. With a lot more time on my hands to ponder my purpose, I could really expand on themes for my life. Then I could see how well these matched with my core beliefs. If there was a natural flow, then I knew that I was headed in the right direction. If something felt forced or there was resistance, something was out of line and either didn’t belong or needed a bigger adjustment.

Here are my core themes that I am reaffirming and reminding myself of as I live with cancer:

I am important.

My needs are important and need to be put first. I don’t come last. Yes, helping others is part of my purpose, but I need to make myself a priority. It feels really good when I snuggle in a blanket and sit by the fire with a book. I enjoy putting something else aside so I can go for a nature walk. Taking a break to drink a cool glass of refreshing green juice tastes heavenly. I have rediscovered the joys of reading and writing. I have gifts to share through teaching, writing, and journaling. My work is valuable.

I also need to choose activities and people who are calming, supportive, and fun. I am too important to put myself in harmful, negative, and stressful environments. There is no need to apologize or explain. No drama for me. I lived as a compromiser for too long to avoid arguments. Honestly, I thought it was easier that way. The problem was that the compromises, or all out giving in, was not calming, supportive to me, or enjoyable. It isn’t selfish to put yourself first. It’s self-care.

My life still has great purpose. When I taught, I made a difference day-by-day, child-by-child. Now, I approach new endeavors with that same driven ambition I had with teaching, but also with more balance since my schedule is highly flexible. What I have to say is important to share.

I am strong.

Another core theme is that I am strong and immensely powerful. No, I am not overly physically strong, but I’m getting stronger. I could never climb the rope in gym class or do a decent pull-up. Those are claims to fame that still elude me. But I have enough inner strength to match a hundred rope climbs and thousands of pull-ups. That’s right, thousands. I had the power to get a classroom singing to original lyrics and choreographed movements about respect for an assembly, AND I was able to get them to think it was cool because it was cool. I have the power to advocate for my best health and make it the best it can be.

I will exercise and eat well to feel better and give my body what I need to be healthy. Health doesn’t happen with just one or the other. Eventually, poor eating choices catch up with a person even if he or she is fit. Great eating choices don’t do a lot if someone never moves or exercises. There also is an emotional payout to exercising and eating well. I get my thirty-minute minimum every day.

I’ve had to dig my heels in a lot more over the past seven years, particularly in terms of what I will accept in terms of how I’m treated. As examples, I was not happy with past phone conversations and what I considered bullying from a long-term disability company that did everything in its power but help me. I spoke up, but it’s a long story and a subject for another post. I’ve also called the patient relations department a few times where I receive treatment over the repeated delays and long waits patients have in receiving treatments because of financial decisions rather than decisions focused on patient care. Here again, it’s a subject for another post. The take away is I’ve become strong enough to speak up for myself when my needs aren’t being met or someone has been rude.

I connect with nature.

I need nature. I love healing green spaces with lots of trees. I absorb the energy. Two summers ago on a short vacation, I observed this first hand. I had traveled with my sister to Door County on Wisconsin’s peninsula. I usually am ready sooner than she is in the morning. I would get a little droopy and sluggish waiting for her before we started our day. My energy level completely changed by simply driving through one of the state parks as a detour connecting one town to the next. The woods provided a combination of nature, peace, energy, healing, and spirit for me all in one. My mood shifted for the better.

I experience the same feeling wash over me whenever I drive into the UW- Arboretum. My mind unwinds as I meander along the paths. It’s the green, all the trees, and being in a place where any humans I meet are there for the same thing as me.

Peace and kindness are recurring themes.

I am all about peace and kindness. In 2013, I finally started a peace journal, made up of Bible passages, ideas from other religions on peace, poetry lines, famous quotes, songs, and anything about peace that resonated with me. When I quiet the house and everything around me, everything narrows down to particular words and thoughts. Then everything opens up big time. It’s pure meditation and oxytocin in action. My spirit soars and I feel like I leave or that I’m lost in the moment. Maybe I’m actually more present than ever. I believe a lot of people pray for peace, which is more important now than ever in today’s world. I read a distinction someone made not too long ago that if people prayed, meditated, or just thought (whatever you want to call it) to feel peace rather than for peace, it would be possible to achieve lasting peace between people in the world. We need to feel it within first and push it outward.

I am a teacher and a learner.

A core theme as a teacher and learner has been central to my life. I loved elementary school. I did well. Reading and immersing myself in a world of story couldn’t be beat. From as long as I can remember, I always loved learning and sharing what I learned. Whether a student or teacher, school was a place where I felt safe, successful, and supported. It’s what I wanted to give my students. Teaching always just fit who I was. I can’t explain it any other way. Sometimes I entertain thoughts of returning to school for courses in writing, history, archaeology, and literature just for fun. For now, I enjoy exploring what interests me on my own.

It is no coincidence that in work with my fitness coach I am focused on a lot of work to strengthen my physical core. I know what is at the center of my personal core. I have rock-solid personal core themes and know who I am. In this sense, I am very well aligned.

Happiness involves living in accordance with your core themes. What you identify at your core should be those things that bring you happiness, enjoyment, and peace. Associated words for these feelings may be energetic, hopeful, valued, proud, loving, joyful, and thankful. You may reconsider your actions if you associate feelings of guilt, boredom, frustration, anxiety, helplessness, discouragement, and anger with them. It seems obvious, yet many people stick with actions or beliefs that go against their core out of habit and because making a change is hard work. Make little changes. In a few months time, a small shift has happened where you feel more like you.

We all deserve to be our best.

Consider responding:

  • What’s at your core?
  • Where/when do you feel most like YOU?

My Mom: Memories of Love and Loss

My mom made the biggest impact on me from anyone I have ever known. She has been gone for six years and I haven’t written anything about her, not even notes.

Why?

Grief.

I couldn’t handle jotting down ideas. It’s still too fresh, but at the same time it feels like it’s been a million years without her.

Today is Mother’s Day.

I am ready to share.

I think.

Violets hold strong memories for me. It started with a violet that first belonged to my grandma. The porch off the kitchen of my grandma’s farmhouse was a greenhouse of sorts during the summer months. The light was perfect to grow an assortment of plants, one being violets. One such violet came to my mom when my grandma died from cancer. It was already huge but continued to thrive for another fifteen or so years. My mom had a knack like my grandma. It went uncared for when my mom was so sick and I thought it was past help when I discovered it. I took it to a local gardening store for a second opinion with the hope that I was wrong. Unfortunately, they agreed with me. However, I decided to give it one more try before I gave in to what I thought was inevitable. Do you know what happened? The violet came back! It had more blooms on it than ever. I started many new plants from the grandmother violet. Many of those have been redistributed to family, friends, and former co-workers.

Eventually, the grandmother violet stopped thriving. Its stem arched and twisted like an arthritic finger. It was very old and long past its expected lifespan. Being so twisted, I didn’t notice when the stem broke away from the roots. By the time I did, it was too late. I struggled to throw it out. I rescued it and had kept it going for years. It was a visual reminder of my mom and grandma. I couldn’t lose it on top of all I had already lost. One day, I finally accepted it was gone, and took what was left and buried it, figuring it was better to return it to the earth than chuck it in the garbage. Something that held so much value didn’t belong in the trash, discarded like it meant nothing.

It meant a lot.

I also needed to reframe how I thought about this magnificent violet. It was a life-giving plant. So many new plants came from one plant, much like the offspring from my grandma in my family tree. Friends and family still send me photos when the violets I’ve given them bloom. In this way, I feel like small parts of my family live on. Maybe the memories are just mine, but good memories deserve to keep blooming. Violets in bloom do this for me with fond memories of two of my favorite people.

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These are two of the many violets in my home.

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Now that I’ve chosen to write about my sweet mom, allow me to share a couple more memories.

I remember one summer day when she was mowing the back lawn. My father was still alive and not yet retired. I was also out in back reading and not being helpful. Yes, I know I should have helped more. The mower had stopped. She restarted it and the mower lurched forward with remarkable speed and headed across the lawn. It was a self-propelled model. My mom grabbed it and held on as her little short legs hurried to keep up with it. She regained control so it didn’t careen into a tree. I know I probably shouldn’t be smiling right now, but smiles are better than tears.

Another time she was outside gardening in a flowerbed I had encouraged her to start. I was older and home visiting for the weekend. This memory finds me once again out in back not being helpful. She stood up a little too fast from weeding and lost her balance. With surprising agility, she jumped over the flowerbed and just kept running across the yard until she slowed to a stop. I didn’t know she had that athletic ability in her! The flowerbed was a source of enjoyment for many years. Black-eyed Susans thrived and prospered.

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Black-eyed Susans took over the garden.

When I moved back to my hometown and got a teaching job at my former elementary school, my mom was there to help. I would bring her to school to help set up my classroom at the end of summer. She was my number one helper. Truthfully, she was my only helper. My mom did a good job cutting out laminated materials, putting up bulletin boards, and other small odds and ends that were huge time savers. She was great company. I’d stop by and visit a bit after the first day of school and let her know how the day went. I have countless memories of her being in my corner.

Another frequent memory I have of my mother is how she’d expect me to know answers to her questions without providing me much (any) information. She called me up so many times to ask, “Who’s that person that we saw at that place doing that thing?” I knew her so well. Most times I could figure it out. We talked every day. I miss that a lot. Whereas I can still talk to her, the conversations are not quite the same. I wrote to her in a grief journal for a few years after she died. It provided a much-needed connection that was part of my grieving and healing work.

We took many trips to Door County in summers when it was just the two of us. It was so easy to travel with her. We walked on trails not knowing where they would lead. Thankfully, they were always circular and we ended back where we started. We indulged in cherry desserts at dinner. We savored ice cream at two particular ice cream establishments. Our pace was never hurried. Sometimes we just sat by the water and visited. We watched a couple of beautiful sunsets. One year she got three consecutive holes-in-one at miniature golfing. She didn’t mind the attention it drew. I am glad there are memories of her around every corner when I visit today.

My mom died from metastatic breast cancer. It was painful to watch her worsen for her last final months. Slowly. Irreversibly. All the while, I was recovering from treatments from the very thing that was killing her. Pain for her. Pain for me. The various benchmarks of death inching closer are not things I care to remember. It’s excruciatingly hard to forget images that haunt me. Trauma mixes in with grief. I look far too much like her. Most of the time I consider this a very good thing. I can even see how she looked like my grandma. It’s when I relive memories of my mom during her last days that I’m not so fond of the resemblance.

These gut-wrenching memories don’t help me. They serve me in no positive way. There is no beauty in them. I am never going to be glad for those moments. It’s really hard work, but I am trying to shift to happier memories when the bad ones get triggered. Happy times are the beautiful moments filled with joy that I’m glad to remember. I finally started my list of happy memories I don’t want to forget. They are nothing more than bullet styled ideas that I can add details to later.

Grief is a lot like paper in a paper shredder . . . the original piece of paper still exists but has changed to an unrecognizable form. It will never be the same again. It never can be put back together. Maybe the paper gets recycled and becomes whole once more, but it’s a different wholeness with different print and perhaps a different texture.

Another shredding is always possible.

That’s grief.

I still have moments where I feel completely shredded.

March and April are months that are filled with more grief for me than other months. May historically is a happy month for me. I am always glad when May arrives. Mother’s Day isn’t meant to be sad. It is for many though who have a sick mother, have recently lost their mother, yearn to become a mother, or may even be a mom herself who isn’t well.

Grief shows up on unexpected days as easily as on expected days like birthdays, anniversaries, or holidays. It comes and goes in waves. I can be okay at a funeral or visitation and then almost lose it in a grocery store. Whenever grief washes over me, I need to acknowledge it and let it pass. It washes back out to an imagined sea soon enough. Grief is ongoing. I swim in it, towel off, and am okay until the next wave. I work through grief and try not to get stuck there. No one should stay stuck in grief.

On Mother’s Day, I need to focus on good memories. The disturbing memories I have need to be banished, or at least minimized, so I don’t have a visceral reaction. So I don’t stay stuck. There is no point in remembering my mom immobile and unresponsive in a hospital bed, still breathing but unable to eat, speak, or open her eyes, and already gone in so many ways. When I look at photos of my mom in better days, she is happy. These remind me of pleasant memories. Even if I’m not in the picture, I go back and am happy in that moment again with her. Happy memories are the places I need to linger every day and not just on Mother’s Day.

I close my eyes and let the good memories fill my heart.

I see her stand in the front window where she’d always wave goodbye to me.

I hear her voice and uncontrollable laughter.

I smell the angel food cake she always baked for my birthday.

I taste her special cran-raspberry and lemon jello dessert salad.

If I try hard, I feel my mother’s hug.

I know how much I was loved.

That’s the best memory of all and never leaves me.

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