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/)

 

Dying On Your Own Terms

Mileva Lewis with the author

Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

Holding Silvan: A tale of loss and love

The new mother’s worst nightmare came in shards of bewildering words: “subdural hematoma… basal ganglia… thalami…sagittal sinus…” And the terrible eventual diagnosis: “severe hypoxic ischemic encephalopathy.”

 Monica Wesolowska

Monica Wesolowska

Once they had processed the meaning of it all – that their beautiful baby had no functional brain, no hope for a life, Monica Wesolowska and her husband David made the hardest decision ever required of parents, to let their infant son die. It was a decision complicated by advanced medical technology, a world into which the family was swept up, and by the wrenching physical, emotional and moral issues. But the two grieving parents clung fiercely to the conviction that they were choosing what was best for their son, and to the determination that for whatever time he had they would give him comfort, care and abundant love.

Wesolowska tells this tale with unflinching honesty in Holding Silvan: A Brief Life, a small book that manages to keep the reader mesmerized with what is ultimately a story of courage and, above all, life. She spoke with this writer recently about the book, and those days.

“I wanted and needed to write it,” Wesolowska says, in response to a question about whether the writing was therapeutic. “I felt very fortunate to be able to spend time remembering Silvan. Also, to revisit the time, do research…” Years later, both the experience and the firstborn son are integral to Wesolowska’s life; in the days and weeks after Silvan’s birth there was time only to struggle with the issues at hand. It is the immediacy of this struggle, overlaid with the love that surrounded Silvan as he died, that holds the reader.

After publication, we asked, did Wesolowska get negative feedback? “I was surprised at how little,” she says. “In part, I think it was because so few people want to read a book about the loss of a baby. A few heartening back-and-forths, when people came around. But the most difficult (discussions) are with parents of brain-damaged children. It turns out that what they’re dealing with is much less extreme (damage.)” In such cases Wesolowska tries to communicate the singularity of the choice she and David made. “My goodness, I would never suggest a child with disabilities is not absolutely loveable. I’m not here to judge the difference of your love.”

Holding Silvan coverThere were helpful and unhelpful things that people said and did as Silvan was dying and in the aftermath. The best, Wesolowska says, “were the people who told me I was a good mother. What I was going through was motherhood, and a deep love. The hardest to take were when people said ‘Why didn’t you let him die a different way,’ or ‘How can you be so certain?’”

No one, though, tried to talk them out of their decision. In their Berkeley, CA area, “We were in a kind of liberal bubble,” she says. “But we really struggled toward the end. Legally, it was frightening.”

For all the fear, tragedy and loss, Holding Silvan is surprisingly uplifting. And, Spoiler Alert: there is a happy ending.