How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18
The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

Emergency Medicine Then & Now

cartwheels-sq
The author and sister Mimi, circa 1940

We were, I think, about six and eight. My sister Mimi and I came home from somewhere, hot and tired and thirsty. We leaned our bikes against the side porch and ran up to the French door – which was stuck tight, as often happened on muggy days. I gave the door a mighty wham. But I missed the wood frame I was aiming for and my hand crashed through the glass pane. I stood there saying “Oh my! Oh my!” until Mimi, who was wise beyond her years, reached through the hole, turned the knob and shoved the door open. I think I was still “Oh my!-ing” while Mimi lead me through the living room, hallway and dining room to the kitchen, splattering blood along the way. We grabbed dish towels, tied them around my arm, returned to our bikes and headed for the offices of our friend Dr. Enos Ray.

Like most small-town doctors’ offices in the 1940s, Dr. Ray’s office consisted of several rooms adjacent to his home – about 8 or 10 blocks from our house. He stitched up my wound, after listening to the story and rather cleverly asking if we had left a note of explanation for our mother. Oops, hadn’t thought of that. Mrs. Ray obligingly started calling around to see if she could find our mother before she encountered an unexplained bloody scene on coming home from somewhere Mimi and I didn’t remember. Dr. Ray probably sent our parents a bill for $5.

Scar
The scar survives

My memory of the entire  incident ends with the bike ride home, all beautifully bandaged and hoping we would see a lot of friends on the way. But the scar (now getting pretty dim amidst the blotches and mottles of seven+ decades) is a constant reminder of my days with the World’s Best Big Sister and a current reminder of the changes in healthcare over those decades.

 I was re-reminded recently. I am fond of remarking at the slightest opportunity that I still, in my golden octogenarian years, have all my original parts – give or take a few teeth. Two of those unoriginal teeth are in the form of very expensive crowns attached for the last 15 years to a far more expensive (not to mention painfully acquired) implant. Not long ago, they decided to swing slightly outward, without so much as a by-your-leave. After a moment of horror (and gratitude that this happened at breakfast with no one but a sympathetic husband at the table) I realized I could nudge them back to where they belonged. I took to chewing on the other side. I called my good friend, longtime neighbor and fine dentist Richard Leeds. He said I should make an appointment with his implant friend Dr. Chin. “You’ll really like Dr. Chin,” he said. “It’s kind of like going to see the mad scientist. But he’s the best.” So I waited until Dr.Chin returned from vacation. And indeed, despite the very proper and competent staff who welcomed me, there was something of a mad scientist to the good doctor. “Let me just peeeeeer around here,” he would say, reaching for strange radar-beam lights and x-ray machines, studying my jaw from every conceivable angle.

 Eventually, he said, “There’s good news and bad news. The bad news is that you’ll Grinprobably need an expensive new crown. The good news is that the implant is just fine so you don’t need surgery, so you don’t need me.” Whereupon he shook my hand, said it had been a pleasure, and no, there was no charge.

 Later, summoned back to Dr. Leeds’ office – and anticipating future appointments for expensive new crowns – I thanked him for sending me to the charming mad scientist. He said he had a few not-so-mad-scientist ideas of his own. Whereupon he gave me a crash course in types of crowns and types of implants now in use, and explained that he thought he could screw my errant teeth back to where they belonged. The explanation was accompanied by several rather vehement maneuvers, and followed by extensive fiddlings around, bite-checking, tooth-filing and what have you. And lo, I am back to where I started with the non-original teeth and their original compatriots. Dr. Leeds will send a bill for considerably more than $5, but probably thousands less than a new crown would have cost. I could not help remembering the days of the de riguer family doctor and family dentist.

Sadly, it should be noted here that Dr. Ray has long since gone to his rewards, and Dr. Leeds is no longer accepting new patients. But given the precarious state of healthcare in the U.S., I can only be grateful for the extraordinary emergency care (Kaiser Permanente included) this middle-class American has been blessed to receive.

Would that healthcare were such for everyone.

“Life’s Work” : A book of life for today

Willie in scrubs.fullDr. Willie Parker wants the moral high ground back.

That ground was seized 40 years ago, to his regret, by those who would deny women control of their reproductive destinies – “when ‘the antis’ adopted words and phrases like ‘pro-life’ and ‘culture of life.’” But Parker, a deeply committed Christian physician who has provided compassionate care – including abortions – to countless women, is out to retake the moral high ground of reproductive justice. With kindness, scientific truth, and scripture. Parker’s book Life’s Work: A Moral Argument for Choice tells his personal story alongside the stories of real women needing to choose abortions and the men and women fighting to preserve their right to do so.

In a recent appearance before a group of residents and other medical/academics at the University of California San Francisco, Parker spoke of his life and work.Life's Work Both encountered a turning point, he explains, on hearing Martin Luther King’s famous last speech which included the biblical story of the good Samaritan. In that story: after others had passed by a man in need a Samaritan stops to help. Those who passed by, Dr. King said, worried, “If I stop to help this man, what will happen to me?” Parker writes in Life’s Work that “What made the Good Samaritan good, in Dr. King’s interpretation, was that he reversed the question, ‘If I do not stop to help this man, what will happen to him?’” Immediately after hearing that, Parker writes, “Once I understood that the faithful approach to a woman in need is to help her and not to judge her or to impose upon her any restriction, penalty or shame, I had to change my life.”

Parker’s life-change led him from a good job as an ob/gyn in an idyllic Hawaiian locale to becoming an expert in abortion care – both the medical procedures and the many and complex needs of women he sees when providing care. His passion now is to keep that quality of care available, especially to poor and underserved women in parts of the U.S. where access is made more and more difficult by restrictive state laws. Which led him to talk of the politics of abortion.

Fran & Willie Parker 6.14.16

“President Trump has an agenda that marginalizes women,” he told his UCSF audience. “But he does not have a mandate. We have to do a deeper dive into engaging politically, and not legitimize what’s happening. It’s most important not to become disheartened – which is a self-fulfilling prophecy.” Parker, who grew up poor in Alabama, the descendant of slaves, says he “draws from the history of enslaved people” – in understanding the women he sees and their need to make their own, personal reproductive choices.

Some 60 years ago this writer, faced with a pregnancy resulting from workplace rape, was forced to seek out a back alley abortion. There was no Willie Parker to defend my choice, or to explain why it was morally and spiritually right. No one should be able to claim some moral superiority that supports sending women back to those dark ages, which is the direction we are headed. Now, though, there is a voice to be reckoned with. To quote Gloria Steinem re Life’s Work: I wish everyone in America would read this book.

Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

Breast Cancer? Ask questions!

In honor of International Women’s Day (even if I didn’t quite get it finished in time,) this brief message is about a book recently re-issued by Dr. William H. Goodson III that should be in the hands of every woman with breast cancer, wanting to understand breast cancer or helping someone who is going through breast cancer.

Pink flower

It’s Your Body . . . ASK is a guidebook for talking with your doctor about breast cancer. I would’ve given anything to have had it when I had breast cancer, and a mastectomy, a dozen years ago. Maybe I would’ve made different decisions, maybe not. But the reality is this: most women, unless they have had medical training, would never think to ask a question like “What are the side effects of removing axillary nodes?” Personally, I didn’t think to ask about nodes at all. Other than considering the size of my cancer, in fact, questions I might have asked about its rate of growth, alternative treatments, follow-up therapies – – were mostly not discussed because I didn’t know to ask them.

This is a book that gives not just answers (it offers many answers about families, about hormone-based therapies and other issues) but more importantly: questions. If you, a breast cancer patient, know the questions, your doctor needs to give you the answers. What’s that lump about? What about these other pains and symptoms I have? What are all of my treatment options?

(I would say, here, Full disclosure: Dr, Goodson is a friend of mine. But it would be more braggadocio than disclosure. Bill Goodson and I shared a few discussion program podiums It's Your Bodyseveral years ago when his gripping novel about sexual violence against women, The Blue-Eyed Girl and my Perilous Times: An inside look at abortion before – and after – Roe v Wade were both newly released. I’m a writer. He’s a Senior Scientist at California Pacific Medical Center Research Institute; a recognized leader in breast cancer care who has been (among other things) a Professor of Surgery at the University of California San Francisco and President of the San Francisco Medical Society, and is listed in The Best Doctors in America.)

Credentials aside, It’s Your Body . . . ASK is worth a look. It offers a pathway through turbulent times, which can be far less turbulent if you have some help in steering your own ship.

Check it out.

Talking Your Way into a Better Death

Angelo Volandes
Angelo Volandes

“If you do something to my body that I do not want,” says physician/author Angelo Volandes, “it is assault and battery. But if I do the same thing to you in (a medical situation,) it is standard of care.”

Volandes thinks this last is a bad idea. He is on a campaign to change the way American doctors and patients, and indeed the country at large, understand what is done to American bodies at life’s end. He spoke of this campaign, and his new book The Conversation that outlines it, at a recent Commonwealth Club event in San Francisco. When he’s not taking time out to promote the book and the campaign, Volandes practices internal medicine at Massachusetts General Hospital in Boston and is on the faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning Decisions, a non-profit foundation dedicated to improving patients’ quality of care.

“Ninety percent of people want to die at home,” Volandes says; “most die in hospitals. There is a misalignment between the type of medical care they want and what they get.” About this unwanted care? “If you’re in the hospital and get unwanted care you never bargained for, I still get paid for it.”

After watching too many patients endure end-of-life treatments he was sure they would not have chosen, Volandes started an unusual practice: taking every one of his patients to visit the intensive care unit, and some to visit the dialysis unit. Once they gained a better understanding of what some of the aggressive treatments – CPR, breathing machines, etc – actually looked like, the patients almost always moved away from “Do everything” to comfort care as their choice.

The basic change Volandes believes is needed begins with a conversation between physician and patient. Those conversations do happen, and there is now Medicare reimbursement, but few physicians find them easy, and few patients know how to inaugurate them or what to say. “Never did a senior physician have to certify that I could talk to a patient,” Volandes says. “The patient needs to know ‘What are the questions I need to ask? What are my options?’ Life’s final chapter needs to be written – but the problem is, I’m writing it (instead of the patient.)”

This writer has been advocating for individuals to write their own final chapters for over two decades. With others writing those chapters instead, the costs are monumental and unnecessary – and millions of Americans die after undergoing painful indignities they would never have chosen. Physician aid-in-dying – approved by a majority of doctors and 7 in 10 Americans and now legal in five states – is one key piece of the puzzle. But the elephant-size puzzle piece is how to get every one of us to make known, well before those “end-of-life” days arrive, what medical care we do or do not want.

Volandes’ conversations could put that piece in place. Every person alive who takes time for the conversation (and for writing it all down) will likely die a better death.

 

 

On Being a Blessing

There was an invisible pall hanging over the banquet hall.

An annual feel-good celebration of a cherished cause, the room was filled with friends and supporters of the San Francisco Free Clinic. The Clinic offers medical care for the uninsured; the pall had to do with the new President-Elect’s pledge to increase the ranks of those uninsured by unknown millions by immediately repealing the Affordable Healthcare Act.

health-care

For 23 years, SFFC supporters have filled the same banquet hall. The annual event, initiated by the late San Francisco investor/philanthropist Warren Hellman and his wife Chris, generates the entire budget for SFFC’s operation. Not coincidentally, the San Francisco Free Clinic was founded 23 years ago by the Hellmans’ daughter and son-in-law, Tricia and Richard Gibbs, two young physicians who decided to throw over the prospects of their lucrative medical practices in favor of starting a free clinic for the growing ranks of uninsured in need of quality medical care.

(Full proud disclosure, this writer and her husband have been supporters of the Free Clinic since its opening day.)

A highlight of the annual event has always been brief closing remarks from the host, and after Hellman’s death, this task fell to the Drs. Gibbs. This year, Richard Gibbs said a few words and then turned the podium over to his wife.piggy-bank-w-stethoscope

“One thing I have now learned,” she said, “is never to write a speech the day before an election.” She went on to explain how the Free Clinic has made incremental progress in its mission every year since its founding, and she had prepared remarks about that narrative with the expectation that this would continue. With the election of Donald Trump, though, comes the realization that the story of ongoing progress – Clinic staff not only provide care, they regularly guide clients into finding affordable insurance – will encounter a speedbump. Acknowledging that many in the room probably voted for Mr. Trump, and that politics would be inappropriate to the event, Gibbs said she still had wanted to find a way her remarks could be relative and upbeat.

So she turned to the story of Abraham. Gibbs is a serious student of the Torah, and would not have had to spend extra time on recalling that story. She noted that Abraham’s narrative was not incrementally always upward, but had its own speedbumps.be-a-blessing

“God told Abraham to be a blessing,” she said. “And I realize that’s what we can do. You are all a blessing to (the Free Clinic.) We can all go out and be a blessing.”

For election week in California, it was a reassuring thought.

 

Willie Parker vs Reproductive Oppression

Dr. Willie Parker
Dr. Willie Parker

“The Racialization of Abortion,” Willie Parker titled his talk; “A Dirty Jedi Mind Trick.” He then spent about 45 lively, provocative minutes elaborating on the theme.

The occasion was a recent Grand Rounds presentation at the University of California, San Francisco School of Medicine, where he addressed a standing-room-only crowd of (mostly) young interns for an event that more commonly draws a smattering of attendees. But when Willie Parker comes to town, it’s a good idea to bring in extra chairs. Parker is an African American physician, a provider of abortion and reproductive health services to women who would otherwise be denied them, current board chair of Physicians for Reproductive Health, a ferocious defender of women’s rights and fearless citizen. He is also this writer’s personal hero.

Parker explained in his opening remarks that his “is heart work and head work. Dr. Martin Luther King said the heart can’t be right if the head is wrong. (King) also said we have guided missiles and misguided people.” On the podium, delivering a rapid-fire lecture in behalf of reproductive justice, Parker is akin to a guided missile consisting of equal parts passion, outrage and statistics. The youngest of six children whose mother sent them to church three times a week, he speaks with the cadence and conviction born of those roots.

“There are over six million pregnancies per year in the U.S.,” he says. “Half of them are unintended. Of the unintended pregnancies, half end in births; half in abortions. One in three women under 45 will have an abortion. While unintended pregnancies have fallen among the upper classes, they have increased 29% among the poor. Blacks and Latinos are disproportionately likely to have unintended pregnancies…”

And it is at this point that Parker’s inner preacher takes over. “People,” he says, “we’re gonna get ugly for Jesus.” It is his challenge to those who attack him, most often fundamentalist Christians, for protecting the reproductive rights of his mostly young, Black clients. Often they also accuse him of participating in “Black genocide.” It is this myth — that abortion is a government plot to eradicate the Black race – that leads to the Dirty Jedi Mind Trick theme.

“It is epidemiological mischief,” he explains. “They take data, put a spin on it that is not intended, and then start a ‘call-and-response’: You have white people saying abortion is racist, getting Black people to say Amen. They can put a cultural war in your framework. It’s important that we recognize the significance of this message, and debunk it.”

In addition to the epidemiological mischief there are outright lies. Former presidential candidate Herman Cain, an African American Tea Party Republican, said in one speech that 75% of abortion clinics were in Black neighborhoods, to encourage African American women not to have children. Parker says the correct figure, according to the Guttmacher Institute, is 9%.

“At its core,” Parker says of these efforts, “it is patriarchal and insulting. They assume a woman is not capable of making her own decisions about her own body.”

What’s needed now, to combat all this, Parker says, “is a new framework, to define this community problem as Reproductive Oppressionon. Reproductive oppression is the control and exploitation of women and girls and individuals through our bodies.” Parker cites the long history of reproductive oppression that includes “forced breeding during slavery, sterilizations, and human experimentation on Puerto Rican women for the contraceptive pill.

“Current examples of reproductive oppression,” he says, “include limiting access to reproductive healthcare, family caps in welfare, and federal and state laws restricting access to abortion.”

But there is hope. Parker cites Atlanta-based SisterSong and its formidable co-founder Loretta Ross as embodying the principals of reproductive justice. Parker lists these as:

1 – Every woman has the right to decide when to have children.

2 – Every woman has the right to decide if she will not have a child.

3 – Women and families (deserve) the resources to parent the children they already have.

4 – Every human being has the right to primary sexual pleasure.

Anti-abortion forces would certainly argue against at least the first two. Parker’s message to the young interns was that it’s not just argument, but twisted myths and dirty tricks that are being used to deny those rights. He maintains it’s the responsibility of the medical community, among others, to stand up for women who are suffering from being denied, to fight against reproductive oppression.

In all likelihood, Willie Parker will keep right on leading that battle.

  *   *   *   *

(Read Dr. Parker’s statement on the recent Supreme Court ruling against restrictive Texas abortion laws: http://prh.org/)

 

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