Rebecca's Blogs

Rebecca's Blogs

Some musings, mental notes and generally some ramblings from author Rebecca Warner.

Wednesday, 23 May 2018 13:50

Who Do You Trust With Your Life?

 

 

Health Care Surrogate. Medical-system navigator. Caregiver. Advocate. Decision maker. Cast about in your mind and ask yourself, “Who will be this person for me when I need them?"

Don’t assume your child will do it. It’s not a job that just anyone can do, or even will consent to doing.  I was that person to my parents for almost twenty years. I have two older sisters, but my parents entrusted me with that job via a Power of Attorney and Health Care Advocate document, and my sisters were, ahem, generous in relinquishing all responsibilities to me. It didn’t seem to be more than a legal decree for several years; but then it became a part of my life from which I couldn’t be spared.

Here’s what was involved in my being a Health Care Surrogate: Through numerous hospitalizations, surgeries, rehabilitations, and care-facility navigations, I was the decision maker. I didn’t take the duties lightly. Everything was researched before decisions were made. That’s when I had the luxury of time—perhaps 24 to 48 hours. At other times, literal life and death situations meant on-the-fly decisions made with limited information. I had to ask questions and assimilate facts and probabilities that were given to me in shorthand because of the time constraints of the situation.

Unless you’ve had medical training, you’re flying by the seat of your pants, making decisions that are a culmination of facts that are foreign in context to what you know. Add to that hundreds of hours of vigilance spent in hospital rooms, all the while consulting with myriad medical personnel about everything from surgery to tracheotomies to ports to ventilators to wound care to rehabilitation. A caregiver might experience repeated incidents of watching painful life-saving measures being visited their parents. Never-wavering attention to details that build the bridge to the next course of action is required, as is coordination of a care team, from surgeons to specialists to therapists to nurses to aides. Being a health care surrogate means fighting back when doctors tell you, “She’s had a seizure that’s put her deep in the woods and she isn’t coming out.” Or, “The hip-repair surgery went well, but with his complications of Alzheimer’s, Parkinson’s and diabetes, he won’t live more than a year.”  It means taking it personally and spending every ounce of energy and wringing your brain to mush from questioning, assimilating, sorting and finally, decision making. Plus, being the one who will live with the consequences of your decisions.

As a health care surrogate, there’s the doubt that comes from realizing you can’t possibly absorb even a fraction of the knowledge that medical professionals are steeped in; as a result, you grasp just how vulnerable you’ve made your parents by handing them over to a system that’s designed to usher them, since they are “sick and old,” out the proverbial door of life. The system gives up, but you can’t. But inevitably, the decision is taken out of your hands. Death comes knocking again and again, until the door is finally opened, and your only consolation is that you delayed the inevitable by keeping death impatiently waiting at the door.

Who in your life will do this for you?

It can’t be done effectively from a thousand miles away. It can’t be carried out via a two-minute phone conversations with busy doctors. Merely saying, “Do whatever you have to do to keep her alive and make sure she gets well,” isn’t enough. Not by a long shot. Which is why so many people without advocates who expect “the system” to act in their best interest, perish.

Consider the enormity of all a Health Care Surrogate must deal with, and ask yourself again, “Who will do this for me when I’m old and sick?”

I’m compelled to write this blog because this past weekend, seven years after I laid my father to rest, I was faced with a life-and death situation that fell to me during a 24-hour period when a dear 90-year-old friend was rushed to the emergency room after becoming deathly septic. Her colon had been punctured the day before during a colonoscopy. Her son had been there for the procedure, but flew home before symptoms set in. Her neighbor miraculously happened to walk through the door minutes after her collapse and called 911.

Because her children live far away, neither could be there in time to oversee all that came next. Her daughter called me to be the person to intervene. She and her brother are the best of children in regard to being involved in her care, but they were far away. A few years before, I volunteered to become the local person who would be there in an emergency. And when the emergency presented itself on Saturday, I was in my car within fifteen minutes, driving the not-so-local sixty miles to handle it.

And there I was, entrenched up to my eyeballs in a life and death decision on behalf of my 90-year old friend. Déjà vu crashed over me as I discussed with the surgeon, and my still-conscious friend, whether or not to have the surgery, given the Do Not Resuscitate (DNR) order on file. Every complication that could arise, every action that might need to be taken during surgery which would defy the DNR, every probability of danger and outcome, was discussed. We were pressed for time, but I took detailed notes which I quickly relayed in long emails, painstakingly typed out on my Android, to her two children, with no detail or nuance left out. I let them know their mother wanted the surgery. It was my responsibility to give them every known fact and probability of what that entailed.

When the surgeon stumbled over the stated directive of her DNA, with a back note of “I’m not sure you won’t die anyway,” I stepped in to look my friend in the eye and clearly articulate her choices, which came down to: Surgery or comfort measures? I love this woman, which made it difficult, but I’d long ago learned that there’s no place for drama at such a time. Compassion, yes. Love, yes. But surgery was imminent if there was going to be a chance of saving her life. She stated clearly that she wanted the surgery. I could see the relief on the doctor’s face that somebody, anybody, was there to intercede. I wasn’t legally authorized or obliged to do so; I threw out the term “advocate,” and remarkably, not one single person in the hospital questioned my authority to be there. I dare say, if I had not been there, they would have leaned on the DNA, and she wouldn’t be here today.

My emails to her children conveyed the urgency and severity. Her daughter called me to say, “Stop! This is a life-saving measure and she doesn’t want that!” I held my phone to her mother’s ear so she could remind her of the DNR. Her mother said, “I can’t live with this pain. I want the surgery.” The daughter acted absolutely appropriately, and I’m glad she got the assurance she needed. Had she not been available, we would have gone ahead with the surgery based upon my intervention in ascertaining that my friend wanted it.  And now that it was confirmed, it was up to me to see her through it. The daughter, meanwhile, would be taking a flight from London. The son, who had been there the week before, had a court case on Monday and couldn’t come. It was up to me to be there to handle every critical aspect of what was to come over the next eighteen hours, until her daughter arrived.

I’m so relieved to say all went as well as it could, in every respect. The surgery took almost three hours. By the time I finished discussing her post-op care with the nurse and anesthesiologist/pain manager, it was midnight. I went to my friend’s apartment for the night and returned to the ICU at eight o’clock the next morning.

Finally, in the afternoon when she was sleeping and I knew her daughter would soon arrive, I left to drive the sixty miles home. My husband, who had lovingly supported me through twenty years of time-and-energy-devouring care for my parents, was as supportive as always. But he saw the toll that 24 hours had taken on me, mentally and physically. Since my father’s passing seven years ago, I have powered down. This was like running a marathon flat out after not having even put on my running shoes for seven years. At sixty-three, I’m no longer in shape for such marathons. More such situations will occur with my friend, and I’m deciding I can’t commit to ushering her through them. It’s a damn hard job, and I’m just not willing to take it on.

So who will? In my experience, there are three things that drive a health care surrogate: guilt (wrapped in obligation), love or compensation. I don’t have enough of the first two, and I could never accept the other.

Now, knowing the profundity of the job of Health Care Surrogate, ask yourself who in your life will take it? Who will succumb to guilt or love in advocating for your care? Let me state as fact that just because you raised a child, that child may not be willing to care for you. I’ve seen it way too often.

If you think you will just compensate someone, it will be expensive. I once paid an RN who was smart enough to incorporate, ninety-dollars an hour to coordinate my father’s care after he broke his hip while I arranged my life so that I could fly down and take over. The bill was over two thousand dollars for those three days. Can you afford that?

And if you’re counting on medical system personnel to make decisions that are in your best interest, get real. What’s easiest, most convenient and most cost-effective will always win out.

Whom will you trust with your life when it hangs in the balance? Whoever you decide that person or persons are, discuss it with them in detail. Have a Health Care Surrogate Designation and Living Will in place. Tape a DNR to your refrigerator if you don’t want invasive and drastic life-saving measures to be taken when the EMTs arrive. Verbalize and document your preferences beforehand. Be specific in directives.

If you don’t have children, as I don’t, buy long-term care insurance. If you do have children, buy it anyway to save them from the financial burdens that can ensue. Decade-long assisted living and nursing home care for my father, who with his retirement benefits and Social Security didn’t qualify for Medicaid by a mere two hundred dollars, added up to over a half-million dollars.

Maybe you’ve been putting off this decision. You may be relatively young, and the necessity may seem years away. But a serious accident at forty can make you as vulnerable as a heart patient at eighty.   

If you are childless or don’t have a good relationship with your children, you’ll need to press the issue of who, if anyone, is willing to take on this huge responsibility. Don’t wait to put a plan into action. I can guarantee, your life will one day depend on it.

 

 

Have you ever had a destination in mind, but were waylaid, and ended up where you were really meant to be?

We left for a family Christmas in Louisiana, intending to visit the Civil Rights Memorial Center in Montgomery, Alabama on the way. My husband had confirmed it would be open on December 23rd, so we were there at 10 a.m., waiting for the doors to open.

When we were told by an employee that the Memorial Center would not be open that day, we were of course disappointed. But another, greater opportunity opened up when he suggested we visit Dr. Martin Luther King’s Church, Dexter Avenue King Memorial Baptist Church, one block away.

The church door was locked, so I gave it a short rap. A lovely woman opened the door, and when we told her why we were there, she drew me into her arms for a righteous hug, giving me one of the warmest welcomes I’ve ever received anywhere. She invited us to take in the mural painted on the wall to our left. We were drawn into the mural, studying the images, slowly taking a walk through the tumultuous life of MLK. It was beautiful and painful and unforgettable.

 Would we like to see Dr. King’s office, she asked? I wasn’t sure I understood—did she mean the office in which Dr. King wrote some of the most moving speeches ever voiced? Where he wrote sermons that lifted hope and shifted generational thinking? Surely we couldn’t just walk into that office, could we?

When she ushered us in, I burst into tears. I have no idea what came over me, what powerful, poignant force rushed into my heart so that I was unexpectedly and uncharacteristically crying in the middle of Dr. Martin Luther King, Jr.’s office.

She left and came back with tissues, and that’s when she said I could go around his desk and sit in his chair. But I couldn’t, I just couldn’t, because I wasn’t worthy. In one sense, I wanted to, thinking I could absorb the molecules that shimmered in the air around us, the particles that held this man’s essence fifty years later. I wanted to hold onto what I was feeling forever. My husband pointed to a Bible on a shelf, and though I wanted to reach out and touch that lovingly-worn book, I couldn’t. Again, I didn’t feel worthy of touching the Bible MLK used to divine his purpose, and to reckon his spiritual and scholarly understanding with the true meanings within the teachings of Jesus.

My husband and I were raised Christian, but we are not religious people. We don’t attend church. We don’t read the Bible. We simply live by the Golden Rule, and figure that covers most of how Jesus would want us to live. We believe, as Dr. King did, that we are all children of God, and brothers to each other.

But my spirit has been sorely tested this past year, and has become weakened and wearied as I’ve witnessed this administration’s assault on “all God’s children” who aren’t white, or straight, or male, or Christian. I have never been able to reconcile how 80% of Christian Evangelicals voted for a man who not only lies, but spouts racist, xenophobic, misogynistic, and divisive rhetoric as readily as he draws a breath. Even more perplexing to me is how, after a year of his bludgeoning the world with bombastic bigotry, they still support him.

So my Christian soul, formed in childhood and not well-nourished of late, was flagging.

But then, we walked upstairs and stood in the sanctuary where a true Christian, a true man of God, a shepherd, a leader, a teacher and a dreamer sought to make his dream, which was our founding fathers’ dream, "That all men are created equal," come true.

King challenged black Americans to believe in this dream, and to fight for it. He advocated peaceful means, though he understood many black bodies would be given up in the fight, as they had been throughout their history in our “land of the free.”

He challenged white Americans to believe in his dream also, and to fight for it to become a reality through legislation and its enforcement, as well as by living it in word and deed.

The docent—a different woman than the one who greeted us and led us into Dr. King’s office—spoke to us and another couple whom we’d briefly met downstairs. They were black, from Savannah, and on their way to New Orleans. When we met, we shook hands; when we parted, we embraced. And what happened in between was what we needed to revive our belief in the goodness, the kindness, and the true message of Christianity.  

The docent asked us to join hands and sing, “We Shall Overcome.” The man said he wasn’t sure he knew all the words. I said my husband and I had terrible voices. She overrode our protests. We would join hands and sway side to side as we sang, she said, starting on our left foot. Her beautiful voice carried us through our inadequacies. Immediately after, she said, “Someone say a prayer.” Now, I’m the last person who wants to be called upon to lead a prayer. I’m the one who quickly points to someone else at the holiday table and says, “Jim, will you say grace?”

But it was as if a lightning bolt shot through me, from the top of my head to the soles of my feet, and so without hesitation, I uttered the words, “Our dear heavenly Father...” I don’t remember what else I said, but for the first time in my life, I knew what it felt like to be filled with the Holy Spirit.

When I finished, the others exclaimed about the beauty and power of the prayer. The docent called for hugs, even though she didn’t have to, because we were all needing and wanting to embrace each other and relish the feelings of pure love and brotherhood that abided within that sanctuary, and within ourselves.

So yes, on that day, when the door we sought was closed to us, the one we really needed to go through was opened unto us...and what we beheld was glorious.

Tuesday, 09 January 2018 19:19

The 2020 Vision of Oprah as President

Oprah’s speech at the Golden Globes was the unchallenged highlight of the evening. There she was, an icon who was saying the words that had to be said, in a tone that resonated with strength, not rancor, and at a time when we most needed to hear them.

But President?

To hear once again a well-spoken, knowledgeable orator who told the unvarnished truth without rubbing us raw, was like drawing in a breath of fresh air and having it fill our deflated selves. Such an intelligent, on-point speech was reminiscent of President Barack Obama, who not only made sense, but made us think.

Some could say that we are just hungering for an articulate person to state things in a dignified manner. I often read comments that lament the loss of a president who was thoughtful, intelligent, and articulate—and Oprah, true to her character, was certainly all of those things at the Golden Globe Awards.

But President?

Perhaps we’re drawing parallels between the two that lead to the conclusion that if anyone can do the job, it’s the woman who did as much as anyone to put Obama in office.

 Oprah Winfrey bridged the divide between black and white, rich and poor, classy and trashy in this country for more than 25 years. She embodied the sentiment of Rudyard Kipling’s formula for success, foremost among them:

“If you can talk with crowds and keep your virtue, Or walk with kings - nor lose the common touch...”

From residents of the ghettos to residents of the White House, Oprah connected with all on a humanitarian level. More than that, she dispelled a lot of racist and misogynistic misconceptions:

“See, I’m black, but I’m not: 1) a welfare mom; 2) a crackhead; 3) a ho’.”

“See, I’m a woman, but that hasn’t stopped me from achieving every goal I’ve set out to achieve.”

“See, I’m welcomed everywhere and not discriminated against because of the color of my skin.”

With both the implied and spoken tag line....”And you can be, too!”

But President?

“I’m Every Woman,” her theme song for years, induced women of every color and nationality to consider that, inside, we are in fact the same. Our skin color is different, but we harbor many of the same goals, dreams, challenges, disappointments, and the desire to better our lives. Oprah blurred the lines in the coloring book, so that we all bled out onto the same page, making a much more interesting and beautiful picture.

I have stated my belief to whomever would listen to me that, without her helping us to see that blurred lines can result in a more beautiful picture, Barack Obama would not have been elected president.

She saw his potential, and cultivated it. She announced on her show, with an enthusiasm we got caught up in, that she was supporting him for President of the United States. She had been laying down groundwork for the acceptance of people of color in powerful positions, with her being the most worthy of not only our acceptance, but admiration.

So when she pushed Barack Obama’s face into our TV rooms, in living color, and said, “This man!” we believed in him also. She had convinced us over many years that anything was possible, so why couldn’t a black man be president?

We trusted her. We knew she was smart. We knew she overcame adversity and used steely will and determination to build and empire. We admired that she had a glamorous life, but was enormously philanthropic. And she accomplished all of this wearing black skin and having breasts. Oprah shut down our excuses for, “I can’t.”

And that’s what she did again at the Golden Globes. The worldwide reaction to her speech underscores how much power, sway and admiration she still holds in the world. We’ve missed her, and we want to embrace her again.

But President?

Oprah also reminded us that graciousness, class and strength are what we are deserving of in a leader. She looked and sounded like a leader because she is a leader, but she also knows that there are other really smart and capable people who can advise her, as they’ve done in her rise to wealth, fame and power; and she’s not an egomaniac who would ignore that advice.

Does that mean she would make a great president? Let’s ask ourselves: Do we really want someone who is not political in the sense that she knows how to work the gears in D.C.? Do we trust that she could be as brilliant in running the government as she has been in building and running her empire?

Most of all, would she earn our respect as president, just as she earned it as a mogul?

There are some parallels between her and our current president (ouch, quit throwing stuff, hear me out!) Both are well-known public figures, famous for different reasons, but still famous. Both have absolutely no governing experience.  Both are wealthy enough to live a leisurely life, so we have to wonder what would drive them to want the headaches that come with that office.

But President?

But it's the divergence between Trump and Oprah that goes to the core of their characters that makes her a much better choice for president: Oprah wants to unite us; Trump wants to divide us. If Oprah were to run for that office, it would be because she sees a need to bring the country back together, and all that that includes and implies. That’s what she’s done throughout most of her remarkable life. She used the power of her platform to transform the racial, sexual and even the political landscape. She helped empower millions of women from every walk of life, and she knows that those women--because of powerful, misogynistic male politicians--are on the brink of losing their empowerment. She knows we’re sinking back into the quicksand of racism, and we need someone to pull us out before we’re pulled down so far into that gritty vortex that we can’t be rescued.

If Oprah can work her special magic in bringing us together again, then she would be an ideal president, because that's what we need here, now, again, more than anything else in this country--unity, inclusion, and tolerance and respect for diversity. She may not have the political experience, but she has more people experience than possibly anyone on earth. And that’s what the governance of this country is meant to be: Governance of the people, by the people, for the people.

People want their welfare (a life in which they fare well) to be the central consideration of the government; and in that respect, Oprah’s looking mighty good as being the person to give them what they want.

But President? Maybe so.

Sunday, 25 June 2017 19:38

How Low Can They Go?

It disturbs me that with every stroke of his pen, Trump is pulling another plank from the platform that upholds the lower-and-middle classes of this country. From hobbling workers' rights to decimating healthcare, his and the Republican’s policies are making it tougher for people to live with dignity and be fairly paid for their hard work. So many hard-won fights over so many decades are disappearing before our eyes--workers' rights, women's rights, LGBT rights, minority rights, healthcare rights.

Now the Republican-majority House and Senate are proposing a new healthcare law that guts the Affordable Care Act (ACA) and threatens to leave up to 23 million without health care coverage.

Those between the ages of 50 and 64 will see premium rate increases that will drive many of them to forego insurance altogether. Whereas the ACA prohibited charging older people more than three times what young people were charged, the American Health Care Act (AHCA, aka Trumpcare) will increase that difference to five times as much.

The House Republican Trumpcare plan eliminates the income-based tax credits and subsidies available under the ACA, replacing them with age-based tax credits ranging from $2,000 a year for people in their 20s to $4,000 a year for those older than 60.

The Senate plan is different in that tax credits will vary by income at a lower eligibility level than under the ACA. Sounds good, right? But the credits are smaller because their value is tied to the cost of less-generous insurance than under the ACA. What does “less generous” mean? 

 

Currently, insurance companies are required to provide coverage for what the ACA termed, “Health Essentials.” These include:

  • Ambulatory patient services (outpatient care you get without being admitted to a hospital)
  • Emergency services
  • Hospitalization (like surgery and overnight stays)
  • Pregnancy, maternity, and newborn care (both before and after birth)
  • Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)
  • Prescription drugs
  • Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)
  • Laboratory services
  • Preventive and wellness services and chronic disease management
  • Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

Under the AHCA, states can waive essential health benefit requirements, allowing insurers to exclude coverage for health care products and services.

So while Republicans—and particularly Trump—are promising lower premiums, they’re also allowing the stripping away of basic services we’ve come to expect for our premiums. Take a look at that list again. Imagine not having coverage for prescriptions, laboratory services, or even hospital stays, and tell me how much “savings” one can really expect in paying for health care. The catch is, these services can be covered by health insurance companies, but for each covered service you “order,” you’ll pay dearly.

  • The proposed defunding of Planned Parenthood for one year will affect millions of poor women who rely on the Medicaid-reimbursed care they receive now. 97% of all services provided by Planned Parenthood include basic wellness and early intervention procedures. This, taken from their website, describes what they do to ensure women’s and men’s health.
  • Planned Parenthood health centers focus on prevention: 80 percent of our patients receive services to prevent unintended pregnancy.
  • Planned Parenthood services help prevent an estimated 560,000 unintended pregnancies in a single year.
  • Planned Parenthood provides more than 295,000 Pap tests and more than 320,000 breast exams in a single year, critical services in detecting cancer.
  • Planned Parenthood provides more than 4.2 million tests and treatments for sexually transmitted infections, including more than 650,000 HIV tests.
  • Planned Parenthood affiliates provide educational programs and outreach to 1.5 million young people and adults in a single year.

The proposed plan makes deep cuts to Medicaid. It ends the Medicaid expansion under the ACA. States will receive less federal Medicaid funding overall. The Senate bill includes deeper Medicaid cuts than the House bill.

These cuts will throw hospitals, doctor’s offices and medical facilities into a tailspin. Expect to see rural-to-mid-sized hospitals close their doors, and doctors discontinue their practices. Expect to see exorbitantly higher premiums for those who are insured, because those folks will, once again, be picking up the cost for those who will no longer be covered by Medicaid. Until the ACA, those who were insured were subsidizing those who were not. Without Medicaid, those who are insured will be doing more heavy lifting than ever.

To explain why this is so, I’ll use my personal history with insurance.

I have made a health insurance premium payment every month of my life since I got out of college. I am now 62, and fortunate to be very healthy. I liked the ACA insurance mandate (gone with this Republican plan) because everyone had some skin in the game. Even if they refused to buy insurance, they had to pay a tax. As a result, for the first time ever in my life, my health insurance premium actually went down in 2017!

It was only eight dollars a month, but it went up year after year before the ACA, sometimes as much as 28%. I rarely even met my then-low $1,000 deductible, yet when I got the dreaded annual letter from my insurance provider, it always said, "This rate increase is not due to your use of health benefits, but the use of health benefits by those in your area." So for decades, I subsidized those who used the hell out of their insurance, as well as those who didn't have insurance.

Finally, with the ACA payments that were made to health insurers by the federal government, it wasn't up to just me and other subscribers to keep subsidizing the costs. The ACA was a relief valve, and the curve flattened. It wasn't perfect, but it was working!

Now that will be gone, and I can't imagine how much my premiums are going to go up between now and when I am eligible for Medicare. But they will go up for everyone, because once again we’ll be subsidizing the uninsured. My insurance provider had originally anticipated 8% increases in 2018, but when the House bill passed, it revised that to 22% increases.

And who will benefit from these massive increases imposed upon the lower-and-middle classes?

The 1%. According to the assessment was made by the Joint Committee on Taxation, a nonpartisan panel that provides research on tax issues, two of the biggest tax cuts in Republican proposals to repeal the Affordable Care Act would deliver roughly $157 billion over the coming decade to those with incomes of $1 million or more. People making $200,000 to $999,999 a year would also get sizable tax cuts. In total, the two provisions would cut taxes by about $274 billion during the coming decade, virtually all of it for people making at least $200,000, according to a separate assessment by the committee.

Repeal-and-replace is a gigantic transfer of wealth from the lowest-income Americans to the highest-income Americans.

Maybe when enough of the lowest-income Americans—many of whom voted for Trump—get  huge increases in their 2018 premiums, they'll wake up and realize that their president, their party, caused their suffering.

I just hope the Democrats ram this fact home and run on nothing but this issue during the 2018 election cycle.

How low can they go? We don’t know yet, but they are plumbing the depths of decency, and we can expect more muck to be heaped upon us as they do.

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