Category: Social Support

Patient Advocates Can Help

If you are having a tough time navigating medical care, patient advocates can help! Last week I was talking to a friend who recently tore the meniscus in his right knee. He was informed by doctor’s office personnel that he needs surgery. He had a few questions, so he requested a call from the doctor before he scheduled. The response: This is standard care for this type of injury and you don’t need to talk to the doctor. He’s going to tell you the same thing I’m telling you.

My friend was taken aback. As a former Division 1 college basketball player who continued his career playing Masters Basketball, he’s accustomed to superior medical care. He’s also used to being treated as part of the healthcare team. When I told him his experience was not uncommon for the average patient, he was shocked. He also wasn’t sure what to do next.

After some searching, I found the information for the associated hospital’s patient experience team and sent him a link. Unfortunately, it wasn’t as simple as a single search within their website. It took several tries with several keyword variations. This is also not uncommon. It is unfortunate.

The healthcare system is often hard to navigate. When you feel sick, injured, and vulnerable, it can be next to impossible. That’s when a patient advocate can help. If you have a family member who is capable and available to serve in this role, that is ideal. But many of us do not have that.

So, how do you find an advocate when you need one? If you use a clinic associated with a hospital, that hospital may have an office of patient experience. Sometimes it may be called the office of patient and family centered care (PFCC). Sometimes just using the keywords patient centered care will get you to the proper place. Other hospitals will have someone on staff called a patient advocate. If you don’t want to search online, call your local hospital and ask for the extension for the patient advocate or patient experience office.

Patient advocates may have a degree in social work or nursing, but they are not functioning in the same role as a hospital social worker or a nurse. They are more like your own personal communications team. When you run into an obstacle like the one my friend did, an advocate can talk to both parties and help find a solution that works for both.

They can also help you understand a doctor’s instructions, help you seek a second opinion, and help you sort through different treatment options. An advocate can assist your family in understanding how they can support you. Because they work within the system you are seeking to navigate, an advocate may have many avenues for solving a problem that you would not know about.

Not all advocates work for a specific institution. Some work for state health departments. Others work for independent services. When dealing with long-term care, you may receive similar services from an ombudsman program.

It’s always hard to ask for help, especially when you feel vulnerable. Learning about the programs available in your area when you’re well is a great way to prepare. The Beryl Institute gives awards to institutions and professionals that innovate ways to improve the patient experience. If you are a member of an underserved population, Centers for Medicare & Medicaid Services (CMS) may have a specialized program to assist you.

You are an important member of your healthcare team. It is important that the rest of the team collaborate with you to achieve the best outcome. That includes creating a treatment plan that considers what’s most important to you. In order to do that, the team must share information and treat you with dignity and respect. Anything less is unacceptable.

There is a shift toward prioritizing the patient experience because it has become a significant measure of hospital quality. That means, now more than ever before, patient advocates and patient experience specialists are available to assist you.

I wish this had been true when I was struggling to get a diagnosis for psittacosis and then celiac disease. But I am grateful things are changing. I feel better knowing that when I need them, patient advocates can help!

Distillation

It’s a snowy day and I’m thinking about distillation. We’re having record cold weather – so cold my background noise is the sound of water dripping from the faucets accompanied by water boiling for tea. Today’s high may reach 14⁰ if we’re lucky. A quick review of the supplies on hand reveals several bottles of natural spring water as well as distilled water.

Distilling water was my first scientific experiment. It was eighth grade, and I was in Introductory Physical Science (IPS). I don’t know what the class was supposed to be, but in hindsight I’d describe it as the lab portion of the chemistry class I took a couple of years later.

We were thrown directly into this first experiment, learning the steps of the scientific method along the way. In groups of four, we were also learning about beakers, Bunsen burners, rubber tubing, glass tubing, and, I must confess, redoing experiments gone wrong. As we attempted to identify the distillates without resorting to tasting them, breaking down water into its basic parts seemed hard.

So much of life is like that. We get thrown into situations that require we learn on the fly, record the steps, master the tools, and learn the lingo all at the same time. It didn’t take a pandemic for this to be true, but like IPS, the pandemic has highlighted some weaknesses in our collective skillset.

By the end of the year, I had a top grade in IPS class. But that’s because I was willing to use my Study Hall to go back to the lab and try to distill water without the smell of burning rubber tubing if necessary. Mastery takes a willingness to fail, learn, and try again. Learning is the meat of that success sandwich, but there are other important ingredients.

Improving ourselves, our families, and our communities will require mastery of certain skills. Let me distill a few of them down for you:

Insight

Learning takes place not just in the understanding or retention of facts. Facts need context. Experience leads to greater levels of understanding the facts before us. Without this greater understanding, we may lack insight.

I don’t mean insight so much in the aha sense as in the ability to discern and discriminate between the subtle layers, distillates, of a situation. Without such discernment, it is difficult to find appropriate, durable solutions of consequence.

Empathy

Chemistry and physics don’t change if we have no empathy, but our application of the knowledge provided by them will. Likewise, the practice of medicine may be based on an understanding of physiology, anatomy, and chemistry, but if it is not practiced with empathy, there will be less healing.

As the pandemic has shown, vulnerable populations continue to be vulnerable. Our empathy seems to primarily extend to people with whom we identify. This doesn’t necessarily mean we don’t feel empathy for those who are different, it may only mean that we tend to ride along in our comfort zone without ever thinking of those outside our realm.

Some of us have trouble looking directly at things that are painful to see. It is hard to look horror in the face. But to live empathetically, we must learn to see the holes in our vision and figure out a way to fill the gaps.

Courage

Courage enhances both insight and empathy. It is the thing that allows us to stand by our principles, look horror in the face, protect our children, go out on a limb for our friends. Courage underpins innovative solutions to problems.

Courage comes in many forms and cannot be judged by any standard measure. Any time you do something although it frightens you, you are demonstrating courage.

Nimbleness

Some situations require swift, clearheaded decision-making. Feeling confident in your ability to choose well with or without input facilitates stepping into a role you did not anticipate.

Learning to compartmentalize without getting stuck also makes for more nimble decision making. Of course, it’s important to deliberately set aside time to process the feelings later.

Boundary Setting

No matter how much insight and empathy we show, no matter how good we are at making emergency decisions, and no matter how courageous we are, none of us can do everything. Knowing our own limits and setting boundaries that protect our physical and emotional health is critical. When we cannot, or do not, there is a price to pay.

The current pandemic will be followed by another one. While I cannot predict when or where it will begin or what form it will take, I can say with certainty that we can leave the future better prepared for it than we were.

To do so, we must develop skills that help us distill down the challenges, face those challenges, summon our courage, make swift and sound decisions, and set good boundaries. Then we must use insight and empathy to shore up the systems that support us, especially our most vulnerable.

Inspiring Lessons of Connection from Parents with Critically Ill Children

Planning for a Win

Well, here we are smack dab in a new year and it’s time to start planning for a win. I’ve always hated the term strategic planning. It’s often thrown around in corporate settings along with an eyeroll that means we’re generating a big report no one will read and we have no intention of following. In spite of that, planning is critically important for improving our health, our enjoyment, and our lives!

B-O-R-I-N-G. I can feel your eyeroll reading this. The thing is, a lack of planning will rob us of safety, leisure, and time down the road. We know this so well we have the cliché: an ounce of prevention is worth a pound of cure. You can’t prevent unless you know what you’re preventing and make deliberate efforts toward doing so. In order to be deliberate, you must think through the process. This, is planning.

So, how can you motivate yourself to do something that seems useless until you need it?

Observe someone else

What’s difficult to see in ourselves is easy to see in others. Every time you tell your teen that cleaning her room would go faster if she’d organize, remember that organizing is implementation of planning logistics. Every time you tell your son that his homework will be easier if he’ll do his hardest subject first, remember that increasing efficiency by minimizing your weaknesses is planning.

Shop

If you love shopping, get yourself in planning mode by clicking through product pictures that will make your tasks easier. Always running out of printer ink at the most inopportune moment? Find a storage container you love to store extra. Eat too many chips because you forget to buy crunchy vegetables? Favorite a couple of crunchy vegetables in your grocery app so they’ll come up as suggestions next time you shop.

Use the shower

If you feel you can’t spare the time to plan, do the mental work while you’re in the shower. When I designed for clients, most designs started in the shower. I’ve solved a lot of problems there too. I often plan product production in the shower. The only problem is my autopilot isn’t perfect and I sometimes forget to use shampoo.

Find something pleasant

As you open your mind to planning in spite of internal objections, notice if there’s one tiny thing you enjoy about the process. For some of us, hand writing lists in a leather journal with a favorite pen is enough to bridge the gap between reluctance and progress. Planning while sitting in your favorite chair with your favorite beverage can also be pleasant (or fun or dangerous depending your favorite beverage and the amount consumed, no judgement).

When it comes to a workout plan, finding the specific activities that make you feel good will help you adhere to a schedule. In fact, if a workout makes you feel better there won’t be a need for a formal plan. You’ll seek it out. Swimming and yoga are my favorites. Truthfully, I’d rather be doing yoga right now that writing, but that does not fit my plan for today.

Solve a puzzle

Life is a puzzle that’s always adding new pieces. Solving a what-would-I-do-if puzzle can be a great mental exercise. When I see some disaster on TV, I devise a plan for what I would do if faced with that circumstance. I don’t get obsessed by this or start ordering 50 years of supplies. I just think through the possibilities and make a mental checklist. For instance, I have a procedure for the steps to follow if the bridge in front of me is suddenly gone and I can’t stop my car before it plunges. Disaster response is a puzzle to solve. Planning also seeks to put the pieces of life in order.

Reward yourself

A reward at the end of a task isn’t as motivational for me as the inherent benefits of planning that I will enjoy later, but not everyone is like me. If rewarding yourself with two hours of binge watching once you’ve finished the task at hand, then do it. Have food delivered rather than cooking another meal or order a pair of earrings you’ve been eyeing. There’s absolutely nothing wrong with incentives!

Be flexible

Any rigid plan can feel stifling at some point so allow yourself some flexibility. You may have saved planning for a rainy day that turns out to be sunny. Don’t strap yourself to your desk, get out and enjoy the sun! You’ll feel more invigorated and motivated later.

Run across an interesting article while you’re researching something? Go ahead and read it, then come back to the task. Too often we read the article, but then punish ourselves for not sticking to the plan. That just demotivates us for the next planning session. Incorporating flexibility instead, frees us to enjoy a digression occasionally without feeling bad.

Be honest

How many of us say we hate planning and then invest hours scoping out the perfect vacation spot with a smile on our faces? Do we really hate planning or is it tolerable when we’re doing something we consider leisure rather than work? Owning our individual quirks, motivations, and tolerances will make every decision easier and more understandable. And it will ease the internal struggle that prevents action.

Bring your sense of humor

No matter how much you plan, some things will go awry. The universe, family, or a boss will throw you an unavoidable curve ball. When plans fail in ironic and silly ways, it’s okay to laugh. If you recognize you’ve become too attached to a plan you didn’t want to make in the first place, it’s okay to laugh. It’s not so much about the plan. Plans often have to be revised. The thought process, expectations, and intentions that show us the path forward are what matters.

Just do it

There is a lot of wisdom to the Nike slogan. Sometimes the first step is all we need to get us going. If you can muscle yourself through one step, just do it and see what happens. Often, the second step is easier and by the 10th you won’t even remember your objection.

Now, get out there and win 2021. It’s going to be a tough one, but that’s no reason not to excel and thrive! Planning now will help later as challenges appear.

Winning is being informed. Winning is showing up. Winning is stretching yourself. Winning is being kind. Winning is embracing change. Winning is seeing the opportunity in every challenge. Winning is loving your flaws. Winning is learning. Winning is understanding your value. Winning is listening. Winning is contributing. Winning is speaking your truth. Winning is granting yourself grace. Winning is granting grace to those you do not like or understand. Winning is accepting love.

Winning is giving. Winning is…limitless.

You Can Never be Too Prepared…Can You?

There is no Permanent Record

Life is a process and there is no permanent record. This year has shined a bright light on the US culture. One of the things I’ve noticed is that we seem to view what happens right this minute as determinative of everything that follows. This is hobbling our thinking at a time when pivoting needs to be swift and nimble.

It is absolutely responsible and important to carefully consider decisions. But if we don’t empty our mind of expectations, assumptions, conventional wisdom, and trending topics first, we both limit ourselves and create undue pressure at a time when we need less.

Rather than recognizing that uncertainty is always with us, some have responded to this year of swift change by further entrenching themselves in ideas or behaviors that do not serve well. Many times, it comes down to the idea that if we do something unconventional, or different than our family or friends, and it doesn’t turn out well, it will go on our permanent record.

There is no permanent record. If someone holds a long-time grudge, that’s on them, not you. If someone continues to judge you for a mistake you have acknowledged in spite of it being a one-time error, that’s on them. If your parents disagree with your decision, but you’re okay with the consequences, it’s their problem, not yours. If everyone in your Facebook group disagrees with you, it doesn’t mean you’re misguided.

I understand it doesn’t always feel good to stand alone. I left high school a year early. My dad thought that was a mistake. I had the credits to graduate and went to straight to college with a scholarship in hand. In spite of this, and the fact that I received my high school diploma the following year along with my class, he still believed it was a mistake.

Ten years later, although I had no regrets about the decision, he scored it as an error on his version of my permanent record. I could have accepted his view and let it create doubt or I could feel confident that I had researched my options and was willing to continue to move toward my goals.

Were there failures along the way? Of course. But failing in an endeavor does not make me a failure because I know I don’t have to become mired in that glitch. I can view it as a chance for improvement. To remain inspired, I keep these words from a 1910 speech by Theodore Roosevelt in my head at all times:

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

If there were a permanent record, I would want it to reflect me as a contender in the arena rather than someone who always towed a line drawn by others. I’d want it to show that my decisions were well thought and carefully made. I’d want to be seen as a problem solver who moved past obstacles. And I would hope to be judged on more than appearance or net worth.

If you are a student whose grades are suffering during the pandemic, it is not a life ruining experience. Learn the life lessons in front of you. Those are more valuable than any letter grade.

If you are a parent struggling to be productive while also minding the kids, cut yourself some slack when you don’t perform at your 2019 level. Not all productivity can be measured in immediate output. Ask any strategic planner.

If you are a child who cannot visit an elderly parent in long-term care, just do what you can to stay connected. The separation does not mean your relationship has ended. It just means it has had to shift.

If you are feeling frustrated, sad, and angry because you cannot safely attend a wedding, funeral, graduation, performance, or family reunion, those feelings are normal. You may need to designate some time for self-care to grieve the loss.

If you are having to ask for help, it doesn’t mean you aren’t capable. We all need assistance under certain circumstances.

If you are a frontline or essential worker, thank you! Collectively, we have placed an undue burden on you. It will take a toll. That is not because you are weak. It is because you are a human tasked with superhuman expectations.

There’s lots of catastrophizing going on right now. The news and social media are filled with hyperbole. It’s easy to get caught up in the idea that our lives are falling apart. Some are suffering devastating pain and loss. Others are suffering a change in routine. Many of us fall somewhere in between.

But before we decide that we can’t bounce back from the setbacks of 2020 and 2021, let’s remember that we can adapt when needed. We can see ourselves as the man in the arena and use challenges as motivation to be better. We can shift priorities and make better choices. And we can evaluate, reevaluate, and leave our mistakes in the past because there is no permanent record.

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