The care they need – the care they want

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If any part of health care in New Jersey needs reform, it’s end-of-life healthcare. Patients here are likely to undergo more intensive medical care, in their final days, than in any other state. All this treatment rarely helps the patients; likely it just makes them uncomfortable.

David Barile MD, palliative care specialist, founded NJ GoalsofCare,  a non-profit, to help everyone — lay people and medical people — achieve their goals for this stage of life that is often feared and ignored.  “We’re working to set a new standard by helping healthcare providers, patients, and families make medical decisions that genuinely reflect a person’s wishes,” says Barile. He created educational materials and documents to ensure that patients would receive the care they need and no less, and the care they want and no more.

In our family, we have had examples of too much care, too little care, and just the right amount of care. The “just the right amount,” no coincidence, was supervised by Dr. Barile. 

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Now his small organization has coalesced into The Goals of Care Coalition of New Jersey. Its partners are healthcare providers, government agencies, and community organizations.  Founding members are an impressive list:  NJ Hospital Association, the Medical Society of NJ, the NJ Association of Health Plans, the Health Care Association of NJ, HQSI, the Home Care & Hospice Association of NJ, LeadingAge NJ, the NJ Health Care Quality Institute, the NJ Palliative Care APN Consortium, the VNA Health Group, Samaritan Healthcare & Hospice, the NJ Association of Health Care Social Workers and the NJ Association of Mental Health and Addiction Agencies.

From Robert Wood Johnson Foundation it has a one-year grant, $195,000, to address disparities in access to palliative care for minority populations living in New Jersey. It also landed a $75,000 matching grant, and here’s where I — and maybe you — come in. I’m donating, and I invite you to contribute. You can do it through a Facebook fundraising page or directly through GoalsofCareNJ website. 

Talking about the end-of-life does not come easily! That’s why I believe both the medical people and lay people need the GoalsofCare materials.

Bottom line: When it’s time to say goodbye to someone you love, it’s such a comfort to know that the caregivers are following the patient’s wishes.

 

 

 

 

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Entertaining Engineer: Prud’homme

 

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Gathered to hear Bob Prud’homme speak at the Princeton Chamber breakfast was a contingent from Princeton United Methodist Church. In this quickie snap, from left: Bruce Henry, Barbara Fox, Prudhomme in back, Jamileh Gerber in front, Dana Dreibelbis in back, Daniel Shungu in front. Also attending from Princeton UMC: Ed Sproles and Doug Fullman.

Scientific “war stories” were on the agenda today, as Bob Prud’homme entertained members of the Princeton Regional Chamber at the Nassau Club. Some of the twists and turns of his 40-year career at Princeton University revealed good news, some not so good.

In the disheartening category was the realization that, since virtually no drugs are manufactured in the United States, the U.S. stands to lose significant intellectual capital re drug development.

Why? A therapy doesn’t leap from lab to assembly line. It undergoes translation from research to retail in a “pilot” manufacturing plant, where veteran managers and supervisors can keep close tabs on quality control. Until recently the major pharmas built those pilot plants in the U.S., supervised by U.S. managers. If all the pilot plants move overseas, technical managers in the other countries will acquire that extremely valuable expertise.

On the heartening side, Prud’homme says he often finds himself working with research scientists in Asia whom he knows – because they were his students and collaborators at Princeton. Surely this answers any chauvinistic assertions that U.S. schools should limit the number of students from abroad.

IMG_4615In the good news category, Prud’homme and his collaborators get money from the Bill and Melinda Gates Foundation to develop drugs for global health. (UFAR founder Daniel Shungu, seen chatting with Prud’homme before the breakfast, is also the recipient of Gates funds.) What can sell in a blister pack at CVS won’t work for a third world country, which needs drugs to be packaged in jars that will last for six months in a hot damp climate. Princeton’s engineering quad leads the industry in meeting the need for these opportunities in drug delivery.

Only inexpensive drugs can be brought to poor countries. In contrast, cancer therapies are so costly that they can’t be used in the Third World. Prud’homme worries that cancer therapies will even be too expensive for OUR country’s insurance capacity, and that our healthcare business plans are in danger. Either our healthcare insurance will topple, or it will be outrageously unequally distributed, or the people will make decisions about what gets covered and who doesn’t.

One fix would be to deny $60,000 immunotherapy if it won’t prolong life by at last a year. Another way is to adopt the single-payer system used in Australia and make the hard decisions. “I worry about the future of our healthcare system,” says Prud’homme, “and that we will have an unjust society. What problems are we willing to live with?”

Prud’homme memorably described the ins and outs of nanotechnology in clear terms. The challenge for using nano in injectable drugs is that the drug might disperse too quickly, before it reaches the target site. The difficulty with using nano molecules in oral therapies is that many molecules are hydrophobic. They do not live comfortably in water.

His lab, successful in conquering both challenges, has been selected as the “academic lab of choice” by the major pharmas. The story behind that reinforces MY conviction that our town is ever so fortunate to have this university and these research labs at our doorstep.

Many complain that because the university has “deep pockets” it should pay more in lieu of taxes. Exactly because Princeton University has those deep pockets, it can afford to offer generous terms to potential partners. Someone asked how scientists can get molecules through the patent process without revealing secrets to competitors. The answer, says Prud’homme, lies in the university’s motto “Princeton in the Nation’s Service.”

Nobody has approved this metaphor, but here’s how I would explain it. You have five pirates at your door for Trick or Treat, almost identically costumed. One has a face mask, Pirate X. When a big pharma (BASF, GSK, Pfizer, Merck – all Princeton collaborators) wants to secretly develop a molecule, Princeton sends all five to the patent office, revealing the identity of four, leaving one unidentified. This gives the big pharma lead time to develop Molecule X. (Somebody please comment if this comparison doesn’t work.)

Princeton University came late to the entrepreneurial market becauase. as Prud’homme acknowledged, research suitable for the commercial market used to be scorned by the academics. Princeton was one of the most hoity-toity of universities in condemning research that results in a salable product.  He credits the philosophy of John Ritter  (in charge of technology licensing) and the success of two researchers – Steve Forrest and Edward C. Taylor – with changing the university’s attitudes about the inviolable sanctity of basic research. Forrest (now at the University of Michigan) channeled his research on organic light -emitting diodes (OLEDs) into a start-up, Universal Display Corporation that leads the market for displays for smart phones and has revenues of more than $300 million. Taylor developed the cancer-fighting drug, Alimta, and the proceeds from that virtually paid for the university’s new chemistry building.

With its generous endowment, the university does not have to nickel-and-dime its collaborators, and its scientists and engineers can be “in the nation’s service.”

Labs inside the Ivory Tower

Robert_Prudhomme-orig-300x300Find out what’s going on at Princeton University’s e-quad. What research projects will spawn the next billion dollar company? What, exactly, can we expect from nano technology? Hear Professor Robert Prud’homme’s entertaining stories on Wednesday, November 14, 8 a.m. at the Nassau Club. Plus, it’s a yummy breakfast! See you there — Click here for details.

Epi First, Epi Fast, No Exceptions.

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Illustration from FARE conference

Here is daunting but necessary information about food allergies – and this is for everybody, not just those with the allergies, or their parents or siblings, but also for anybody who has contact with food, and anyone in the classroom, and anyone in contact with the public. Everybody.

This account of the three-day convention for FARE, a national organization devoted to food allergy research and education, comes from Susannah Fox. (Yes, my daughter).

If you don’t know anyone with anaphylactic allergies (for whom mistakes can be fatal) at least dip into this post. You will understand why you get pretzels, not peanuts, on the plane. You will be more careful at the buffet, so you don’t accidentally drip tuna salad on another ingredient.  You will learn something about kissing that you didn’t know.

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Freddish: How to talk to children

In this Atlantic article we learn how Fred Rogers took such great care in choosing words to talk to preschoolers. fred rogers

Author Maxwell King lists the nine rules of Neighborhood language, which he calls “Freddish.” And comments

Rogers once halted taping of a show when a cast member told the puppet Henrietta Pussycat not to cry; he interrupted shooting to make it clear that his show would never suggest to children that they not cry.

 

Princeton: Not a level playing field

weekend reader map

Here is an interactive map.

Zero in on the Princeton zip code and one finds that  black children growing up poor in Princeton are expected to make $27,000 a year when they are adults, and Hispanic children can expect to make $25,000 a year. But white children can expect to make from $34,000 to $50,000 per year.

“Research has shown that where children live matters deeply in whether they prosper as adults. On Monday the Census Bureau, in collaboration with researchers at Harvard and Brown, published nationwide data that will make it possible to pinpoint — down to the census tract, a level relevant to individual families — where children of all backgrounds have the best shot at getting ahead.” This article by Emily Badger and Quoctrung Bui was published in the New York Times on October 1, 2018, and sourced from The Weekend Reader. 

 

Gossip’s Guide: What to see in 20 minutes?

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Antonio Salemme;s Paul Robeson

 

Conversing with a reference librarian at the Princeton Public Library, I learned that visitors sometimes ask: “What can I do in an hour before I leave for the airport?”

With my Gossip’s Guide hat on – I suggest: 

In 20 minutes, more or less

The Quick Paul Robeson Tour: Check out the Robeson bust by Antonio Salemme in the Princeton Room on the second floor of the library. Walk past the Arts Council of Princeton’s Robeson bust (this site formerly belonged to the Colored YMCA) to the Paul Robeson house and Witherspoon Presbyterian Church, where his father preached. (Both visible only from the outside).

the Norman Rockwell “Yankee Doodle” painting at the Nassau Inn Tap Room (reminding the patron that it is NOT a colonial era building!). Check out the alumni headshots. If you have time, a free place to sit is the upstairs lounge, by the fireplace.

Princeton Cemetery. Available at the entrance is a new brochure. 

Tiger Walk:  Stroll from the tiger in Palmer Square and the tigers at the entrance to Nassau Hall. Keep going and you will find more.

The Comparative Architecture Tour: Enjoy the interior of the Princeton Public Library, a Taj Mahal of libraries, designed by the Hillier firm. Diagonally across, the work of postmodern architect Michael Graves. Contemplate the differences. Then check out the interior of the Arts Council and the current exhibit.

Dohm Alley: a startling array of thoughts and objects in a small narrow space. Plus, there’s a water feature good for contemplating, and it’s right down the street from the town’s college bookstore (never miss a chance to enjoy a college bookstore.)

In 30-40 minutes

A quick Einstein tour — the Einstein museum in the back of Landau’s plus the Einstein bust at the corner of 206 and Nassau Street, great photo op. (The house is too far to walk in a hurry, but I tell people to drive and park on Edgehill.) 

Morven, now made relevant by truthful and inclusive exhibits that tell the stories of female occupants and slaves.

Prospect Gardens, always attractive in any season.

Cotsen Children’s Library inside Firestone Library

Princeton University Chapel, always open and it has a brochure about the windows

Tiffany Window Tour at Princeton United Methodist Church on Fridays and Sundays noon-2.

Quick sculpture tour 1: Circle of Animals by Ai Weiwei and Picassso’s Head of a Woman, down by the former Dinky Station.

Quick sculpture tour 2: The Plaza in front of the chapel: statue of John Witherspoon, Song of the Vowels by Lipschitz, and (just inside the University Library, and open to the public) Noguchi’s White Sun. Throw in Oval with Points if you are walking that way.

This tour works if a Princeton native can direct the visitor. Later I may have time to add the links. What would YOU recommend?

 

Connect with your audience

EileenSinett_colorI was lucky enough to be able to take Eileen Sinett’s 4 Points of Connection  earlier this year. In this workshop I was able to put together a talk about social justice — not an easy task but she skillfully guided me through it. Her next presentation of this workshop is on October 18, details here.

Sinett knows how to connect with her students, whether a student is frightened to just open her mouth, or is an experienced speechmaker seeking to hone her skills. Everybody comes away more confident, more ready to step up to the podium.

 

With local sports, he made a difference

A wonderful tribute for a sports writer and, indeed, any journalist: “He instilled in us the importance of knowing that the event you were covering that day was the most important thing to the players and coaches on the field. George never thought he was bigger than the event and he never thought another event was bigger than the one he was covering.”

This accolade is for Trentonian sports writer George O’Gorman from Bob Nuse, Packet sports editor, who I am privileged to number among my friends at Princeton United Methodist Church. Here is his memorial column.

Facts Tell, Stories Sell

All speaking is not the same! Speaking has many nuances, structures and applications, says Eileen N. Sinett of Speaking that Connects.

“It is the communication vehicle most of us have for conveying ideas, developing relationships, sharing feelings, debating points of view and negotiating terms,” says Sinett. She offers two free webinars to support professional development and speaking success. One is on networking introduction and the next, on storytelling.

“Networking that Connects” is on August 16, and I have a conflict for that date.

But I am looking forward to taking advantage of her free offer to tune in to the webinar on Wednesday, September 6 on the subject of “Facts Tell, Stories Sell.” That’s a subject dear to my heart as a newspaper reporter who must “sell” my story to the reader, to make it worth her/his/their time.

Here’s how to register — the only thing you pay is your time!

And having attended many of Eileen’s workshops and seminars, I can vouch that it will be worth your time.