Caregiving and the fight-flight-freeze response

Judy Long

Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

 

Want to put your brain to good use?

child Head

(Part Two of Data Today – Better Tomorrow)

Could this be you? Creating a better tomorrow through brain research??

It turns out one does not have to be a pro football linebacker to have a brain worth studying. One does not even need to have a brain like Albert Einstein’s, Steven Hawking’s or any of those scientists/exceptionalists/geniuses whose brains would seem worth figuring out.

One only needs to be 18 or over and willing to be studied, and then to go sign up on the Brain Health Registry. This entitles you to sit back and wait for your brain to help discover a cure for Alzheimer’s or ADHD or depression, or perhaps help find better ways to treat traumatic brain injury. Not bad, for just having a brain and investing a little time (no money.)

This writer got off to a sluggish start as a Brain Health Registry member. Signed up early on because it sounds like such a great endeavor, but then I ran into a few off-putting instructions like “This will take about 20 minutes. It is best done in a quiet room where there will be no distractions or interruptions.” Twenty minutes, quiet rooms and absence of distractions are three things hard to come by around my house.

Eventually, however, the requisite conditions were found, and I was off to create a better tomorrow – well, in partnership with a few thousand other participants and some very smart neuroscientists – by finding out stuff about the human brain. And this is one fascinating journey. The neuroscientists find it fascinating because they really are going to figure stuff out. But for participants, the fascination is in the process.

Participants enter a little basic, very general data about medical/family history etc. Then the fun begins. We have two sets of ‘Cognition’ tests aimed at assessing our memory, attention and other cognitive characteristics. “These tests give us a sense of how your brain is currently functioning,” the screen says. This participant can only wonder what the Brain Health assessment people think about how her brain is functioning. The ‘Cognition’ tests are computer games on steroids. For a while you try to remember and replicate the pattern of dots, and then you go to the card games. The card games require Yes or No answers about what the cards are doing, press D for Yes and K for No. My brain kept trying to tell me what the cards were doing, while my fingers tried to remember that K was not for Yes.

It is, all in all, a lot more fun that the computer games the rest of the world is playing.

In another three to six months, the BHR people will be reminding me to go back and do it again, or do something else, to see how the brain is getting along. Perhaps they will flag my entry and advise me to check myself into an institution. But more likely they will just combine my data with the data of a zillion more or less anonymous others – and find a cure for Alzheimer’s! Or depression! Or improvements in treatment of traumatic brain injuries! All with the help of my weary, aging brain. Plus, when the survey was completed I got an email from UCSF professor Michael Weiner, MD telling me I am a medical hero. “You’re helping to make brain research faster, better and less expensive – and ultimately that gets us closer to a cure for Alzheimer’s, Parkinson’s, and other brain disorders that strike tens of millions of Americans every year.” Who could resist?

You may want to go straight over to the Brain Health Registry and join the fun.

Life: a sexually transmitted, fatal condition

Life: a sexually transmitted, fatal condition

sunset

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande

Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

Arguing With the Doctor – A plea for end-of-life choice

Dandelion

Does the doctor always know best? And in the case of one’s own precious life and death, is it wise to argue the point?

“No One Here Gets Out Alive” – a quote from Jim Morrison – led the title of a lively (pun intended) debate about aid in dying held recently at San Francisco’s Exploratorium. Part of a series on the intersection of science and politics, the event’s full title was “No One Here Gets Out Alive”: The Science, Politics and Law of Death and Dying. The program sought to address a few issues not easily covered in two hours – but still – including (reprinted verbatim):

Is there a constitutional right to “physician-assisted suicide”? What about a “dignified death” – and what is a dignified death? Should terminally ill patients facing mental incapacitation or unbearable pain have access to fatal ingestion – also known as physician aid in dying? Or would that jeopardize our society’s progress toward more compassionate, comfort-based care?

Participants included John M. Luce, Emeritus Professor of Clinical Medicine and Anesthesia at the University of California San Francisco; Laura Petrillo, MD, a Hospice and Palliative Medicine fellow at UCSF; and program host David L. Faigman, Professor of Law at UC Hastings College of the Law and Director of the UCSF/UC Hastings Consortium on Law, Science and Health Policy.

The program kicked off with a discussion of the science of death itself – defining death being more and more problematic these days. Think Nancy Cruzan, kept alive through a feeding tube in a “Persistent Vegetative State” for nearly a decade until her family managed to convince the State of Missouri that she would never have wanted to be “kept alive.” Or Terri Schiavo, whose PVS ordeal lasted even longer. More recent is the tragic story of 13-year-old Jahi McMath, declared brain-dead by multiple physicians more than a year ago but whose body is still existing somewhere, connected to machines that keep her heart beating.

Those cases are just a few of the markers on the path toward today’s critically important death with dignity movement. This writer’s involvement in the cause began with work as a hospice volunteer in the 1980s, a member of an HIV support group in the ’90s and a volunteer with Compassion & Choices (and its predecessor organization Compassion in Dying) since the late 1990s. C&C is currently leading the fight to make aid in dying legal throughout the U.S., having won significant battles – five states now protect that right for terminally ill, mentally competent adults – with others underway in many areas.

And that issue – should medical aid in dying be legalized in California (and elsewhere) – was the heart of the two-hour program. Of the two physicians, Luce was eloquently in favor, and Petrillo was adamantly opposed. In this writer’s admittedly biased view, Luce’s lifetime of experience as a distinguished physician and professor rather embarrassingly outweighed Petrillo’s credentials, but it is possible to see her emerging-palliative-care-physician status as basis for her absolute certainty that everyone on the planet can experience graceful, pain-free death if only he or she has access to palliative care.

I am less certain. Thus my argument.

In the Q&A period, I posed this question to Petrillo: “If you were my doctor, which is unlikely, and I were dying, which is increasingly likely (I’m 81, for heaven’s sake,) and I have expressly, repeatedly made clear that I do not wish to linger – why should you have the right to insist that I linger?”

Petrillo dodged the question. “I would ask what is causing your pain,” she said. “I would try to determine if you are depressed, and talk about how we can alleviate your pain and possible depression…”

After several abortive attempts to get a response to my question, and figuring the audience had not paid good money to listen to me rant, I gave up. But here are the arguments I had for Dr. Petrillo, questions I wish the minority of physicians who do still oppose aid in dying would answer:

Why should you have the right to insist that I linger, when I am dying?

How can you presume to understand my pain better than I? And why should I have to describe it if I don’t choose to do so?

When I have watched dying people with the very best care and pain control suffer in ways I would not choose to suffer, how can you insist on my going that route?

Why should your conviction about the efficacy of your medical field trump my autonomy?

Dr. Petrillo said she is not religious, so this question would be addressed to others: Why should your religion overrule my religion? Or dictate to me?

It’s my only precious life, after all. Why should I be denied control of its precious end?

 

 

 

Good genetic news for geezers

https://i1.wp.com/upload.wikimedia.org/wikipedia/commons/1/1a/The_Triumph_of_Death%2C_or_The_Three_Fates.jpg

The Three Fates, Flemish tapestry (probably Brussels ca 1510-1520) Victoria and Albert Musem, London. (WikiMedia)

 

Live longer, get smarter? We wish.

And this wish could some day come true, thanks to the gene variant KL-VS, whose friendlier name is the klotho gene. The klotho gene was already known to be associated with longer life. But a team of scientists at UCSF and the Gladstone Institutes, found that it also seems to make people smarter.

One in five of us has the klotho gene. As this writer is definitely older I had hoped to get in on the smarter, although I never cancelled the dementia provision of my advance directives. But in an interview with San Francisco Chronicle health writer Erin Allday Dr. Lennart Mucke, director of neurological research at Gladstone, said, “Klotho increases cognition but doesn’t replace aging-related decline. You’re just coming down from a higher level.” So much for immediate — or personal — optimism.

UCSF Assistant Professor of Neurology Dena Dubal was lead author of the study, findings of which were published recently in the journal Cell Reports. Dubal and Mucke say more studies are needed, but the  hope is that eventually klotho could help old brains — old human brains; so far we’re talking about mouse brains — function better.

This writer, having an old brain far too right-brained to follow neurological research very far, did at least complete several years of Greek at Randolph-Macon Woman’s College some years before Dena Dubal was born. But as my class notes are not handy I turned to Theoi.com, an online encyclopedia of Greek mythology, to find more about Klotho. (For the record, her name is more commonly spelled Clotho in classical texts, but most of all this pre-dates Spellcheck.)

Klotho and her sisters Lakhesis and Atropos where the daughters of Zeus and Themis, and in Greek mythology one couldn’t ask for better parentage. They were known as “The Fates,” or “The Moirai,” the goddesses who determined everyone’s destiny. According to Theoi, “They assigned to every person his or her fate or share in the scheme of things.” Clotho (on the right in the tapestry above) was “the Spinner,” who spun the thread of life. Lakhesis (in the center)  measured the thread of life and Atropos (on the left) cut the thread. Presumably they are arising from Themis; birthing in mythology was somewhat less complicated than today.

(It’s tempting to speculate on what it would mean to have too many Atropos gene variants, but that is going too far with all this.)

No amount of Googling turns up the scientist who named the KL-VS gene variant after Klotho, but he or she had an appropriate understanding of Greek mythology. If Klotho can indeed eventually lead to reactivating old brains, she will have spun us all a golden thread.

 

Your brain at 100+

Since about 1900, when the average lifespan for U.S. citizens was somewhere around 50, we’ve been pushing that boundary ever upward. Today, depending on exactly where you live and other factors like cigarettes and French fries, you can expect to hang on into your eighties and beyond. That’s fine with most of us, especially if our brains stay functional too – and therein lies the problem.

There is reason to believe, if neurological studies on worms prove out, that humans could live to be 300 with a little genetic tinkering. If you sign up for this, a possibility predicted by University of California San Francisco neuroscientist Dena Dubal, you might want to have Dr. Dubal and her colleagues nearby for your brain care.

At a recent luncheon in San Francisco, Dr. Dubal and fellow UCSF research scientist Wade Smith talked of the work going on in their labs as if it were simply what they do for a living. To a spellbound audience, however, it sounded more like miracle-making. “Just a little genetic tinkering.” Altering the aging process, staving off dementia… it’s all in a day’s work. A little extra Clotho (so designated for the anti-aging Greek goddess of the same name) blocked memory loss in mice, Dr. Dubal said; it’s reasonable to project that similar treatment might some day be made available to mammals.

This reporter came home, followed a few of those links and was quickly lost, which is attributable — in part, at least, we hope — not to short-term memory loss but to my degrees in Art and Short Fiction vs the very long list of degrees plus other academic and scientific credentials of Drs. Dubal and Wade.

For those of us already worried about the relentless increase in dementia among the 65+ population, the possibility of living to be 300 is not altogether good news. But fortunately our brains are the concern of the brains at UCSF.

Live longer, healthier: prospects ahead

More news just in on the health and longevity front. At the University of California San Francisco medical center, which I can see from my studio window but that’s about as close as I will ever come to claiming kinship, a clinical trial getting underway will investigate the telomere factor. You haven’t been worried about your telomeres? Get used to them. It hasn’t been so long since cholesterol and genomes became household words.

Bay Area women who volunteer for a clinical trial at UCSF will be among the first people in the world to learn the length of their telomeres – the protective caps at the ends of chromosomes that regulate cell aging and may help people live longer, healthier lives.

Research has shown that the length of people’s telomeres is related to their “cellular age” – the health and stability of certain cells in their body. Because telomere length helps determine cellular health, it’s also been identified as a possible biomarker that can reveal information about a person’s overall health. Short telomeres have been linked to health problems like heart disease and diabetes.

UCSF researchers say it’s possible that identifying a person’s telomere length someday could become as common as checking cholesterol levels. A handful of private companies already have started advertising telomere testing to individuals. In fact, two of the researchers involved in the UCSF study are looking into starting their own company to test telomere length.

The study, reported by Erin Allday in today’s San Francisco Chronicle, will concern such issues as what relationship your telomeres’ length have to health and aging in general, and whether you even need to know a lot about the little cellular-ites. “The idea of telling people their telomere length is totally new and somewhat radical…,” said Elissa Epel, an associate professor of psychiatry at UCSF and one of the lead researchers in the telomere study. (On a purely personal, though relative note: you just try not to worry about it all when you are overage — they want women 50 to 65 — for an aging study and the lead researcher looks like she’s about as old as your granddaughter.)

Medical ethicists say the UCSF study makes sense – as more attention is drawn to telomere length as a potential marker of overall health, doctors should understand whether it benefits their patients to get that information or not.

If people can’t change their telomere length, there may be no point in telling them. Telomere length may be similar to some types of genetic testing that tell people whether they’re at increased risk for Alzheimer’s disease or certain types of cancer, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

Some individuals may decide they want that information – but it’s not always an easy decision to make, he said. “You might find out that you seem to be a premature or rapid ager, but whether there’s anything anybody can do to stop it or reverse it, that remains to be seen,” Caplan said.

How much our telomeres will tell us, what use we can make of it all, and whether you and I really want to know — these issues remain to be seen. Or at least, to be discovered in  the coming study. I have absolute trust in the folks at UCSF. If you do too, and you fit the parameters (female living somewhere in this lovely part of California, between 50 and 65) and want to volunteer to be a part of it all, whip off an e-mail to knowyourtelomeres@ucsf.edu.

UCSF to look at new longevity, health marker.