Author Archives: Cindy Moyer

Life Finds a Way

One of my favorite characters in Jurassic Park was Dr. Ian Malcolm (aptly played by Jeff Goldblum) and one of his best lines was, “Life … uh, finds a way.” He, of course, was referring to the eventual naturally occurring reproduction of dinosaurs created by man who foolishly contended to also have control over their creatures’ ability to reproduce. In many aspects of life, we humans attempt to assert control. Still, life (nature) finds a way, to thwart our plans.

I once had a conversation with an elderly lady about quality of life. She shared her thoughts about having to be fed by someone else. Being fed was undignified to her and she said she would feel like a burden. Despite my best effort to assure her that people would feel honored to help her if her ability to feed herself changed, she was adamant. She was very clear in telling me that she would not want to live if she couldn’t feed herself. In her healthcare documents, she opted not to have a feeding tube inserted. Feeding herself was a measure of control and independence through which she determined her quality of life.

She recently went through some life changes that I will not divulge here, but they have taken a toll on her physical and mental health. She is declining cognitively. She has lost the ability to feed herself – her worst fear. Because she now needs to be fed, she is refusing to eat, losing weight, and “failing to thrive.”

Now, there are choices to be faced and decisions to be made by her family (since she is no longer cognitively able to do so for herself):

Do they want the doctor to prescribe an appetite stimulant?
Do they want to have a feeding tube inserted? (Living Wills have been ignored in favor of preventing “starvation”, which is a myth at end of life.)
Can she be re-trained to feed herself with adaptive utensils?
Will occupational or speech therapy be able to “fix” her self-feeding capability?
Is hospice care more appropriate now?

Whatever her family decides, the choices seem to be: (1) intervene in some way or (2) allow nature to “find a way.”

Caring Choices understands that these kinds of decisions are personal. They are emotionally challenging to consider about ourselves and those we love. Conversations with loved ones and our healthcare team are the best way to prepare for allowing nature to find its way.

Life Intervened

Well, we’ve missed two of our weekly blogs. Life intervened. Two weeks ago on a Saturday morning I awoke with what felt like razor blades in my throat. Couldn’t talk; could barely swallow. Spent the weekend that way and then went to my doctor on Monday who said it was just the “viral crud” going around. I didn’t buy that since I know my body and I know that I’m prone to sinus and ear infections … but figured I’d let it run its course. Then, another life intervention, over the next 36 hours, I had fevers (which I almost NEVER get) and other (more gross) symptoms, so I placed a call to my doctor’s office and received a boatload dose of antibiotics for 10 days. I’m feeling much better now!

Life intervention two: This past Tuesday, Jim was involved in a motor vehicle accident when a young woman rear-ended him in the Subaru while he was waiting to make a left turn into his office parking lot. Fortunately he wasn’t seriously hurt (bruised back with some spasms – muscle relaxants are interesting!) Car has some damage, but it’s fixable. Just goes to prove – you never know what will happen to throw your life out of whack for a bit.

This week, I had the pleasure of providing two educational sessions for family and community members at work. The presentation was titled “Decision Making for a Loved One” and I was happy to see that 20 people attended since this is usually a daunting topic that keeps people away. Our family members at the nursing home where I work are awesome. They are actively involved and engaged in the care of their loved one (most typically a parent). We talked a lot about how life intervenes and throws changes at us that we’re not really prepared for.

We had some fruitful discussion about the legal powers that documents like a General Power of Attorney and Healthcare Power of Attorney bestow and how those legal powers don’t really help all that much when you’re standing around the bed of a loved one trying to figure out what to do. We spent a lot of time talking about talking. How having conversations, about our values and beliefs and the people we want around us when life intervenes, are so much more valuable to surrogate decision-makers than the possession of a piece of paper. Many were surprised to learn that documents are sometimes ignored in favor of people standing around the bed – whether they are the ones with the legal authority to make decisions or not.

There were some tears in the sessions when we talked about the guilt felt when placing mom or dad in a nursing home, or making some other decision with which adult children struggle. We talked about how difficult these conversations can be to start, but I assured everyone that once they get past the first conversation, the next ones seem to be easier. For some in the room, it seemed comforting to know that someone else (me, and the other family members) were going through similar things or have already walked the path of decision-making for a parent through the end of life.

Life intervenes in many ways. Sometimes good things happen (like putting me in my current job to help others my age deal with decision-making for their elderly parent); and sometimes bad (like a sinus infection, fender bender, or something much more traumatic).

Before life intervenes with a medical crisis, traumatic accident or terminal diagnosis, talk to people you love. Talk about what matters to you. What gives your life meaning and purpose? What kinds of symptoms are you willing to “live” with? What abilities can you not live without? Who do you want making decisions for you? Can they make the tough decisions? Can they advocate for you counter to physicians who may suggest a different path?

Caring Choices understands that these conversations are challenging, and making decisions for someone else can be difficult. But we also understand that fear and guilt from decision-making can be lessened when we’ve had conversations and prepared our loved ones with the knowledge and courage to do what we ask. We can help you start talking. It’s never too early, but it can be too late.

Dragged and Thrust

A few nights ago I was reminded how quickly a life can go off the rails. Someone I love is in the ICU after a relatively common and curable illness went on a rampage inside her. What was initially assumed to be a flare-up of a chronic issue became increasingly more problematic as additional symptoms followed. The symptoms compounded one another over a few weeks until a trip to the primary care doctor resulted in an unexpected trip to the ER, followed by several surgeries and now days in the ICU. She’s getting the best care, everything is being done to restore her, and we’re all praying that she recovers and recuperates fully.

Situations like this occur every day in our healthcare system. Patients undergo extensive surgeries, are attended in the ICU by teams of dedicated nurses and doctors who monitor every single bodily function for any change. In the meantime, adult children are scrambling. They are being dragged into the quagmire of complex healthcare decisions and procedures; some with very little understanding of the medical “lingo”. Some operate under the motto “Physician Knows Best” and don’t question anything. Others may consider the route of “do nothing” and elect hospice. Still others may be visited by palliative care personnel who will offer advice about pain management and symptom control. Some adult children may be afraid NOT to continue with surgeries/procedures; others may be afraid to agree to proceed with surgery.

While things are spinning out of control around them, they watch a loved one lying in an ICU bed surrounded by tubes and drains and machines and beeping. These adult children are being thrust into having to making decisions on behalf of their parents (or other loved ones) with little (if any) preparation to know what course of action is desired by the patient.

They’re thrust/dragged into this nightmare for many different reasons but typically for any combination of these three:

No healthcare power of attorney exists on paper or electronic record
They’re the next of kin
They’re the people standing around the bed or sleeping in the waiting room

Hearing my cousin’s exhaustion through the phone the other night after she spent the entire day in the hospital awaiting the outcome of another surgery, I wished I could save her from the anguish of the uncertainty of knowing what to do and when to do it.

Caring Choices intends to keep people from being dragged into healthcare quagmires or thrust into the service of a loved one without the knowledge, preparation and courage to make difficult decisions. We believe that talking with your family about healthcare choices can be a welcomed lifeline. Reach out and grab it.

Letting Go of Sentimentality

I spent much of today re-arranging the master bedroom to make room for a piece of exercise equipment. I’m determined to use it since it will now be right under my nose each day!

Little did I realize I would take a sentimental journey while moving furniture. One of the walk-in closets had become a repository for my childhood furniture that I also used with my now nearly-30-year-old son. I am a self-professed sentimental fool; even more so immediately after each of my parent’s deaths. I clung to these treasures that held deep memories of a wonderful childhood. Memories I did not want to lose with the loss of my parents.

As I am getting older, I am now more focused on lightening the load our home bears. Not only for us to have fewer things to clean or maneuver around, but also so that my son isn’t burdened with sorting through things and organizing an estate for sale. I carefully tucked these treasures away in a closet assuming that my son would one day want them for his children. But, he is a minimalist (and has no immediate plans for a family) and neither he nor my brother hold sentimentality for these things. So, why should I continue to hold on to this “stuff?”

Material things are not where my memories exist. They are merely the matter in which some memories were created. And yet I believe it is common that we hold on to things to help us hold on to the people who mattered to us.

We hold on because the thought of letting go is just too painful to bear.

But we all must let go at some point. To things we’ve collected and held dear as representative of our memories. To adult children who move across the country. To people who move in and out of our lives in pursuit of their own dreams. To people we loved who have struggled with chronic disease (like my Mom). And to people we loved who have had an acute health event that takes them abruptly from our lives (like my Dad and Uncle).

Letting go doesn’t mean forgetting. It doesn’t mean we stop loving these things or these people. It just means that we are re-arranging our hearts to store more memories with people still present in our lives. And I know my parents would want me to do that.

Caring Choices understands that letting go is hard to do. Talking to your family about what you’re willing to live with or without can help them when it’s time for them to let go of you.

Harsh Your Mellow

I’ll admit to being far removed from pop culture and the “scene” of 20-somethings, which won’t be a surprise to anyone who knows me well. I’m not sure I was part of the 20-something scene when I WAS 20-something myself. This week in the nursing home, I heard a 20-something nurse aide say the phrase “Harsh Your Mellow” and I admit I was intrigued by it! I’ve found that there are a couple of different definitions of this phrase, but the one I latched onto was that you ruin someone’s happiness with sad news or drama.

In life, there will always be sad news and for many people, drama. I try to avoid drama at all costs. That may be my 50-something maturity, but I find that drama is usually overrated and typically unnecessary. I have noticed in my end-of-life work (hospice and long-term care) that there is often drama that could have been avoided or just lessened – if only people would have talked when they were healthy and able to do so.

Sadness is unavoidable in this life; drama, though, can sometimes be kept at bay. I’ve watched families wrestle with making decisions for a loved one who can no longer speak for themselves. I’ve seen adult siblings separated by hundreds of miles and a childhood of drama come together around a bedside to try to make decisions for a parent who was indifferent all their lives. Sometimes adult children gather to try to make amends as a last-chance effort to find togetherness. Others appear from a far distance (in time, miles and emotions) to make sure they get “their share” of whatever Mom or Dad may have left in worldly goods.

I’ve sat with patients as they received sad (bad) news from their oncologist. I’ve listened to long-married spouses ask us to help their partner “get stronger” even though their last station is on the near horizon. I’ve witnessed the caring of my Uncle Warren who visited his wife every day in the nursing home where she resided for 7 years even though she could no longer speak or acknowledge his presence. These situations could have been full of negative drama; they were certainly full of sadness.

When I speak with people facing their own illness or death or that of someone they love, I tend to be forthright in providing education and information. I can sometimes be blunt but I am always compassionate. Because of the reality of the subject, I may even “harsh your mellow.”

Caring Choices recognizes that by avoiding discussions about the harshness that chronic illness, terminal diagnosis or advanced aging brings, we may escape the sadness, but the drama may increase – both for us and for our families. We may need to be more willing to “harsh the mellow” when we’re healthy and able to rationally discuss healthcare options. Better to harsh our own mellow than the mellow of those we love.

When “Shoot First, Ask Questions Later” isn’t Effective

The answer seems kind of obvious, right? If you shoot first and it’s fatal, you won’t be able ask questions later. The idiom itself is extremely reactionary. My interpretation is that someone who shoots first and asks questions later is likely reacting to an intense fear of a perceived imposing, immediate threat. Certainly there may be circumstances in life when shooting first is the best option and I’ll let you, the reader, determine what they may be for yourself. Where I strongly believe “shooting first” is NOT the best option – actually, for me, it is never an option – is in making healthcare decisions.

While reading my digital New York Times this morning, I came across an article on dialysis later in life. Embedded in that article is a link to a comprehensive online resource which provides lists of five (or more) things that physicians and patients can use to spark conversation, to help inform of risks and benefits, and to make “right” decisions based on individual circumstances. The resource was created by the American Board of Internal Medicine Foundation (and their partners) and they aptly titled their initiative Choosing Wisely®. From the Choosing Wisely® website:

Choosing Wisely^® aims to promote conversations between providers and patients by helping patients choose care that is:

• Supported by evidence

• Not duplicative of other tests or procedures already received

• Free from harm

• Truly necessary

The advance care planning geek in me is ecstatic to have found this resource! I plan to download the entire collection of PDFs for use with Caring Choices clients. I encourage you to share this site with people you love and your healthcare team for better informed, shared decision making.

We need to be asking questions before “shooting” into tests, treatments and procedures. Asking questions first doesn’t mean that we won’t go ahead with a test, treatment, or procedure. But it does mean that we are making informed decisions based on valid information, examining our situation and our wishes; not simply proceeding because the test/treatment/procedure is available. Some basic questions to ask might be:

Is it necessary?
How will it help me?
How will it hurt me?
How will it impact my quality of life?
How much time do I have to make a decision?
What evidence does research provide about it?

Shooting first and asking questions later is a gut reaction. In healthcare options and decisions, we need to be consulting more than our gut. As individuals, we are the only one going through the physical act of a test, treatment or procedure. However, we are encumbering those we love with the emotional and psychological outcomes of the test, treatment and procedure. These outcomes may involve complex and complicated caregiving, especially in later years. It will be important to know the how-what-why-when-where of caregiving needs when making decisions. Get informed about tests, treatments and procedures. Then, choose wisely.

Caring Choices understands that time can be of the essence when needing to make healthcare decisions. We know that there are times when following our gut makes sense. We also know that sharing conversations about healthcare options and decisions provides a sense of security even if we don’t all agree on the course of action. Making your decisions known to your loved ones and healthcare team will prevent them from the reactionary shooting first and hoping to be able to ask questions later.

Patient-Centered Care

I saw this phrase in a newspaper article this morning and realized I’d grown weary of its use. Unfortunately, “patient-centered care” is so abundant in our language that it seems to have become simply a buzz slogan in healthcare circles. So many institutions use the expression to market their brand of care. An internet search reveals 6,780,000 (yes, millions!) of “hits”. Internet images of patient-centered care, show various “wheels” with the patient placed directly in the center hub with spokes for the variety of individual care providers branching out from the patient. (This is my personal “wheel”.) Cindys Patient Centered Team It all looks good on paper/screen but it must be put into action to be effective.

For many of us who work in healthcare, “patient-centered care” has deep meaning. We strive to provide the best care we can to each of our patients (residents, clients – whatever we call the people we serve) based on the individual’s needs, symptoms, wishes, and goals. Many of us believe that healthcare works best when plans of care — treatments, therapies and medications — are specific to the individual and not a broad-brush application based on generalized assumptions or measurements dictated by institutional protocol.

A few days ago, I attended a very informative seminar on Alzheimer’s disease and dementia care. Every point the trainer made focused on patient-centered care for the patient with dementia. Because there are at least 80 different types of dementia, the need for specialized, individualized plans of care become very important. My trainer repeated a phrase often in her presentation: “When you meet one patient with dementia, you’ve met one.” Which is to say that not every person with dementia will present the same way or respond to the same kinds of care. Some will be aggressive, combative and belligerent. Others may be meek, mild and withdrawn. Most may share a symptom or two like forgetting how to do simple tasks, or be unable to express their needs. In the world of dementia care, patient-centered is obviously paramount. I believe this type of care planning should be applicable to all disease states because if you’ve met one patient with (fill in a disease name), you’ve met just one. One person. One single individual with very different values, beliefs and needs that differ from the next patient with a similar disease.

We need to move away from the buzz. In order for actual patient-centered care to work, patients must become active in their health care planning. As patients, we need to be knowledgeable about our options, understand consequences and impacts, and make decisions. We must ask questions of our healthcare team. Discuss options and alternatives to care. Discuss pros and cons of medications, treatments, surgeries, etc. We need to talk about future healthcare concerns now and prepare our family/friends for truly patient-centered care – making decisions based on our values, beliefs and goals, especially when we can no longer speak for ourselves.

Caring Choices advocates for true patient-centered care by encouraging (and supporting) individuals to talk with their family, friends and trusted healthcare providers and share choices they would make in future health/aging scenarios. Most people already know what kinds of healthcare situations they would not want to be in. The time to speak for ourselves is now, when we’re healthy and able to do so.

The Power of Words

ACP Wordle When I created this Wordle a few years ago for Caring Choices, I chose words that I believed helped to explain the concept of Advance Care Planning as well as words I’d heard from my hospice patients and their families. I hear similar things from my nursing home residents and their families. These words, though, are more than “mere” words on a page or screen.

Some of these words represent what becomes important as people begin to face the end of a life – whether their own or of someone they love. Many of these words require heartfelt consideration and loving contemplation. Talking about some of the words may be downright frightening to some people; others may simply want to focus on LOVE and Family.

Regardless of which word (or phrase) stands out to you in our Wordle, know that you can use that word (or phrase) to begin a conversation with someone you love. For instance, if your eye is drawn to “Quality of Life” you might consider telling your spouse, your best friend, your adult child (etc.) how you, personally, define that phrase. It will mean something different to everyone. But understanding your definition of that phrase will probably provide those you love with a good stepping stone for the next conversation. It may also provide a solid foundation from which your loved ones could make care decisions for you if you are unable to communicate or participate in decision-making.

Someone else might focus on “Refocused Hope” and wonder what that means. Jim and I have used this phrase with our patients and their families on many occasions. Hope shifts from quantity to quality often in the concept of time, of relief from pain, and as simple as moments spent in quiet connection with one’s own thoughts. Hope becomes a desire for peace and comfort in place of “fighting” and “treatments.” Time comes to be more valuable once we see it as limited. This refocused hope may now be the opportunity to see a wedding, graduation, or birth in place of seeking a cure.

“Shared Decision Making” is a main tenet of advance care planning and what our goal as Caring Choices is in working with families. While healthcare decisions are ultimately those of the patient (with advice from their healthcare team), the results of shared decision making benefit everyone involved. Sharing decisions ensures that loved ones understand how and why certain decisions were made so that they can confidently carry out your wishes without second-guessing themselves or delaying the kinds of care you want. Sharing decisions provides an opportunity to share fears and hopes, guidance and love.

Words can be powerful things. When they are combined with action, they can change lives (and deaths). A couple of decades ago my lifelong best friend gave me a picture that we have hanging in a place that we see every day. It reads: “It’s the caring and sharing from beginning to end. It’s the trust and the time that makes a true friend.” Take the time to share our Wordle words with people you care about. Trust that you have the ability to start a conversation that will change your life … and death.

Caring Choices – two simple words that can provide a loving connection between you and your loved ones. Use words to convey your values, beliefs and decisions to people you care about. Caring and sharing from beginning to end.

The Road Well Traveled

As I drove to work this morning, I encountered snow-covered roads from the powerful wind 38 - edited for blog gusts that drifted roads closed overnight. Most roads on my journey this frigid February morning were completely covered except for slightly clear tire paths in each lane. To be safe, I steadied my steering wheel against the gusting winds to keep my tires in those already-cleared tracks from travelers who had driven the same path before me. It was harrowing at times with the drifting snow impacting visibility but I knew if I was able to keep my vehicle in those worn paths, I’d have better traction and stability.

I imagine many people drive like me in this kind of weather … slow and steady, staying in the driven paths to avoid slipping and sliding in collections of snow and ice, and staying alert for traffic signals ahead indicating a stop in slippery slush. I also know that often there are others who throw caution to the wind and drive as if the roads are clear. I know this, because they pass me in unplowed passing lanes at unsafe rates of speed and then spatter my windshield with slushy muck that impairs my view. Sometimes I see them further up the road with their vehicle stuck in a ditch.

While driving cautiously this morning in the clear tracks before me, I thought about the trepidation people have about future healthcare choices and decision-making. When my Mom fell ill for the last time, and we started hospice, it felt as though we were blazing the trail anew and we were both fearful of what was ahead. Because we had hospice care for only a short time, we never really had the benefit of spending a lot of time talking with the hospice team who had been down this road before. None of my immediate circle of friends had traveled this road of hospice care and family caregiving before me. There were no “already-cleared tracks” for me to keep my tires in. But 11 years after Mom’s death, when my Uncle Warren needed hospice care, I’d been down that road before and so I had much better preparation for what was ahead.

I sometimes think people are tentative to start conversations because they don’t know what’s ahead. Because they don’t know how to find the already-cleared tracks before them.

Caring Choices has traveled the road of healthcare decision-making with patients and families, and with our own loved ones. We understand the fear of the unknown. We recognize the challenges of having emotional conversations. We also know that having someone along for the ride who is familiar with the road can make a world of difference in the journey.

Don’t Wait

I recently resigned my part-time hospice social worker gig. It was bittersweet, but necessary. I’m not as young as I used to be (no kidding; who is?). I came to recognize the signs that working a full-time job, plus doing my best for hospice patients and their families in my “moonlighting” flex time job, was taking its toll in more than one way. I wasn’t sleeping well. My stress level was escalating. My focus was segmented in too many directions. I was missing much needed down time to rejuvenate and renew myself. I needed more free time for the “little” things: spending time with Jim, staying in touch with my son, playing with our cats, reading a good book on a snowy weekend afternoon, having meals with friends, etc.

But my heart will always be with hospice and fortunately (yes, fortunately) I can continue my hospice social work with residents and families in long term care. Hospice care is a blessing for many families. This PBS article helps explain why. Please take a few minutes to read it.

The gist of the article is the point of my blog. We’ve seen it all too often with our own family members, our patients and my residents & their families. Those of us who work in hospice hear it all the time: “I wish we’d started hospice sooner for Mom.” I have never heard anyone say “Dad was on hospice too long.” Part of the problem, I think, is that the word hospice still connotes “immediate death” for some people. The PBS article states: “People often wait too long before seeking hospice care. In the United States, the average length of hospice care is less than 60 days with 30 percent of those who elect hospice care dying in seven days or fewer.”

It’s difficult for some to embrace the hospice concept and so they wait to enroll their loved one. Or they wait to have a conversation with a healthcare provider about hospice (or the healthcare provider waits too long to initiate). When my Mom’s doctor told us – “There’s nothing more we can do. Your disease is end stage. It’s time for hospice.” – neither she nor I had ever heard of hospice. There has been much more about hospice in mainstream media since Mom died in 1998 (on her 7^th day of hospice care). I often say I wish we’d known about it sooner. And not just for my Mom’s sake, but for mine and that of my then-13-year-old son.

There was so much support that we did not have time to fully engage. Now I know that there was a social worker and a chaplain available to us for resource, emotional and spiritual support. There were volunteers who could have come into our house to sit with Mom while I took my son to his baseball games (instead of me leaving her alone and then sitting anxiously by my bag phone – it was 1998 – awaiting it’s ring telling me she needed help.) There were people who could help other family members come to terms with the situation. The nurses we met were great; the aides were invaluable to me since I was uncomfortable with bathing my Mom.

Let me stop there to drive home a point: I recognized that there was something I just could NOT bring myself to do. With hospice, there was someone I could call to help us. She didn’t mind that I couldn’t bathe her and she was grateful for the aide who could. And I wasn’t then (nor am I now) ashamed to admit that I could not do this one thing for my dying mother. I could empty/clean her bedside commode. I could clean up other bodily fluids that she would expel given her COPD. I could feed her, wash her clothes, reposition her in the bed, entertain her, listen to her, and spend time with her. But there are reasons that certain people are CNAs and others are social workers (or plumbers, or policemen, or truck drivers, etc.). Each job has demands that the other may not be comfortable doing. My mom knew I wasn’t able to bathe her because we talked about it before we knew her disease had become “end stage”. And I didn’t have any guilt about not bathing Mom because we’d talked about it and there were others who could help us with that.

And there’s the point. We talked. Even before the doctor’s proclamation that there was nothing more to be done, we had talked. We didn’t wait. We continued to talk throughout the next 9 nine days until the morning Mom died. And there was a lot more to be done. Our final conversation, just hours before her last breath, was about her funeral scriptures and songs. Until the very end, Mom wanted to be sure I knew what she wanted.

So, don’t wait. Start a conversation with people you love. It doesn’t have to be a lengthy discussion initially. Just ask your kids who would be comfortable giving you a bath in your last days. You’ll be amazed what conversations follow that!

Caring Choices understands that each of us is designed to do certain things more comfortably then others. Recognize your strengths and abilities and then lend them to care for someone you love. Don’t wait too long. Better yet, don’t wait at all. Talk. Share. Love.