Learning about Aging from Patients and their Children

Last month I wrote about how 13 years after the death of Emily Lublin, a patient with whom I'd had a very warm and constructive relationship, I had contact with her daughter, Langley Danowitz. (I'm using names with Langley's permission.) Emily was more than two decades older than I. I believe she benefited from my attention as a psychiatrist, but I know that I benefited from the insights she offered about aging with spirit and energy.



When Langley and I spoke on the phone she spoke so interestingly about her experience in her 60s (and now, at 70), that I invited her to share her thoughts with others in the blogosphere. A few days ago she sent me this further posting. It's been well documented that physical activity has multiple benefits for the over 65 crowd. Langley brings the research findings down to earth with this personal story:

Fitness and How It Helped Me




To be honest, I am actually 70, as of January. This seems odd, as I feel pretty much the same as when I was 50 and 60, give or take a little stiffness when I get up. I am reminded of the Tin Woodsman’s plea for an oilcan. I hope one day to be able to just spray myself in bed and voila - all the kinks are gone. Is anyone working on this?


Aside from my oilcan hope, I know there is no miraculous fitness method. I started going to the gym late in life – I was 59 and had seen a picture of myself. (My exercise routine for years had been to read the NY Times while doing 15 minutes of leg lifts.) Once I stopped crying, I signed up with a personal trainer for a trial session. I wore my favorite exercise outfit – black ballet tights and a large tie-dyed tee-shirt. My husband photographed me as I descended to the gym in the basement of our building. The trainer was encouraging – she called me “Honey” as in “Honey, just 50 more”, “Honey, what did you eat yesterday?” and “Honey, keep going”. I hated and loved her. She got me started on the Fitness Path and I have never looked back (except when someone’s trying to pass me).


In the 10 years since I discovered fitness, I have tried a variety of exercise, from boxing to Zumba. I started with a personal trainer once a week – now I exercise EVERY DAY. Being a Party Animal, I have found happiness in the socialness of groups. Picture a class – 40 women of varying shapes and 2 guys who either are lost or got dragged in by their girlfriends. It’s like a weight loss meeting – the men are rare and ignored. Before you think I’m a martyr - I should admit that I LIKE exercise. I do it because it’s fun for me and I get to wear cute outfits. Moving my body to commands from an amazing physical specimen just warms my heart – call me strange big time. Many of my newest friends are trainers – I keep showing up for their classes and I guess they appreciate it.


I hope I am inspiring you to give exercise a chance. After all, that is why I’m writing this. If you are just starting, here are Langley’s Five Most Important Tips:


1. Be not afraid to try it.


2. Ask your doctor if you need any restrictions.


3. Join a local gym for a month.


4. Make an appointment with a personal trainer.


5. Try several different classes at your gym to see what you like.


Exercise has totally changed my life – I think clearer, I feel better and I am easier to get along with. Give it a shot and let me know how YOU like it.  All best, Langley

Here's a photo of Langley with her trainer:

In my psychiatry residency, when we overly intellectual twenty somethings asked our training director what we should read to become wise psychiatrists, he said "Listen to your patients...they will be your best teachers!" And when I was dealing with a not very communicative "elderly" man (probably 10-15 years younger than I am now) who became depressed after losing his job at a beer factory, my supervisor advised me to "have him tell you all about what it's like to work in a beer factory all your adult life..." Throughout my entire clinical career I tried to follow their precepts. In retrospect it seems clear that the domains in which I learned most about  life, human nature, and myself, have been family and clinical practice.



But there's always something new to learn. Emily "taught me" about aging before she died 13 years ago. Now her daughter Langley is continuing "conversation" I had with her mother.



What a privilege it is to be allowed to enter human lives as a health professional!

Contact with Families after a Patient's Death

On April 28 I wrote a post to report that the New York Times Ethicist column had taken a quote about doctor-patient sex from this site. The next day I received a phone message from Langley Danowitz, daughter of Emily Lublin, a long time patient of mine, who had died in 2000 at age 84. Emily had a great sense of humor. We had a warm, friendly relationship and very much enjoyed working together on various vicissitudes of her 70s and 80s. At one point Emily said - "you have to promise not to retire before I die." I was sad when she died, but happy to have been able to keep my promise.



Emily and her daughter Langley were close. Over the years I heard a lot about Emily's visits with Langley, who lives in New York. Langley and her husband Jeff conducted a memorial for Emily in Boston, which I attended, and met them there. When Langley saw my name in the New York Times column she called me, to thank me for caring for her mother and to give some news about herself.



When I returned Langley's call we reminisced about her mother, and I heard about how Langley has reinvented herself as an actor when a job she'd been in for 30 years ended. Langley told me she is a "young looking 70 year old," and explained how the advertising industry has used her when they want an athletic, youthful-looking, older person. Since aging is one of the topics I write about on this blog (as well as on Over65, which I co-edit) I invited Langley to write about how she adapted to the end of her long time job. She wrote the delightful piece that follows. I'm publishing it and have spoken in this post about her mother Emily with her permission:



           Part I - Adjusting

Five years ago, when I was (requested to) retire from being the corporate controller (MBA) for a manufacturing company, I was relieved but mostly terrified. After 30 years of non-stop work, I had no idea what I would do to keep myself sane, out of trouble and out of the refrigerator. And although I had always enjoyed the domestic scene, was an avid gym-goer, and had loving family, my life had revolved around the office for as long as I could remember. My 2 thoughts when I got the word were: “you mean I don’t have to come here anymore?” and “omg, now what do I do?” My wonderful husband, Jeff, who had served as Homefront Captain for years, graciously re-introduced me to Laundry and I stampeded into the fray. For weeks, I used my considerable energy cooking and cleaning, organizing and discarding, baking and searing, writing and phoning. Mind you, I was still getting up at 5:30 AM to get to the gym by 6:30 – sleeping in had not occurred to me. Change my Type A style? Never in my mind! Occasionally, I must admit when I raced around my Upper East Side NYC hood, I noticed other gals of an age lunching together and shopping or just strolling…where did they find each other and why did they look so…was it “relaxed”? I wished I had some friends too but – it seemed everyone I knew was still working. Where would I find people to like who would like me too?



Part II – I find a friend



I decided to take up the piano – I’m musical and love a challenge. I hung a sign in our Laundry Room – “Adult student, plays by ear, needs patient piano teacher” and someone penciled on it: “Apt 1222 teaches”. I adopted Friend #1 – my 1982 Kawai console piano, which, as the movers remarked, matches our living room furniture. I found not one, but two teachers, who proceeded to complement and battle each other for my soul. I played in my first recital after 4 lessons – a day which shall live in my annals of terror forever. I basked in the applause and drank lots of wine afterwards.



Part III – I hit the boards



As you can tell, I was learning how resilient I am. So – I finally tackled something I had always wanted to do – become an actor! You should know, I probably came out of the womb taking a bow. After all, I studied Speech at Northwestern and played Little Buttercup in junior high. Now, I had the time to do it professionally – could I? Only one way to find out - headshots, acting resume (somewhat bogus at first), agents – ta dah! As you can tell – modesty is not moi. And, with my physical fitness + energy, I figured that if I said I could do it, I would do it. And now I have the hula hooping (Wellcare Insurance), push upping (Advil) and headstanding (Geisinger) TV credits to prove it.



More to come????

Having the opportunity to know people in depth and work with them on their health and well-being over time is one of the core privileges in being a physician, nurse or other health professional. Thirteen years after Emily Lublin's death I had fond memories of her, and I was moved that her daughter Langley, who I'd only met once, had memories of me from what she'd heard from her mother. Having an opportunity to be once again in the role of Emily Lublin's clinician talking about her with her daughter 13 years after her death is an experience I cherish and feel lucky to have had.



(I couldn't find YouTube videos showing Langley standing on her head in a Geisinger commericial, doing push ups for Advil, or hula hooping for Wellcare, but I did find this tamer video of her in an advertisement for iYogi.

Health Care Organizational Ethics quoted in the New York Times

I'm a regular reader ot "The Ethicist" column in the Sunday New York Times. This morning's column started with a rather sordid situation:

My ex-wife is a physician. We divorced when I found out she was having an affair with one of her H.I.V.-positive patients. I feel compelled to tell the state medical licensing board and the professional societies to which she belongs about her affair. My reasons for doing so are that I feel an intense urge to retaliate her breach of trust and that she potentially exposed me to H.I.V. (fortunately, I tested negative). I also know that, as a physician myself, I should report her to protect other patients, so that she may get increased supervision at her workplace and treatment if needed. Should I report her even though my main motivation is revenge? NAME WITHHELD

After dispensing with revenge as a motive ("There’s no moral argument for ruining someone’s life just because she ruined yours"), Chuck Klosterman, the columnist, goes on to discuss doctor-patient sex. I was surprised to find a quote from "Doctor-Patient Sex: Why is it Unethical?", a 2009 post on this blog:

There is, however, a problem here. The fact that your ex-wife had an affair with someone who is H.I.V. positive is not a professional issue (and a physician would be well positioned to conduct such a relationship, as she would fully understand the risks). But the fact that the man was her patient is reason for concern. Personally, I can easily imagine situations in which a doctor could have romantic interactions with a patient and everything would be fine — but those hypothetical possibilities don’t make the practice acceptable. R.M. Cullen, a doctor in Auckland, New Zealand, has written at length about the import of a “zero-tolerance” policy when it comes to doctor-patient sexual relations. Here is the core argument, as interpreted by Jim Sabin, director of the Pilgrim Health Care Ethics Program at Harvard University: “Cullen argues — in my view correctly — that it is not necessary to prove that every instance of doctor-patient sex will be harmful . . . to establish that doctor-patient sexual relationships are unethical. The medical profession can, and should, adopt a zero-tolerance ethical stance based on a) the potential for harm to the patient with b) no offsetting potential benefits for the patient, combined with c) the inevitable harm to trust in the medical profession itself.” In other words, the potential downside is massive, the potential upside has nothing to do with medicine and the social take-away makes every other doctor look sketchy.




So does this mean you should report your ex-wife? If you agree with Cullen’s argument, you should. If you simply want to hurt her, your position is weak and immoral, but the action of reporting her itself remains defensible.

In the past five years I've written 20 posts on doctor-patient sex. These posts have had more than 25,000 page views - not much by internet standards but a lot for a blog with a wonky title and a somewhat esoteric focus. The 20 posts have received 128 comments. I have the impression that folks get to the posts via Google searches when they're concerned with the topic. I assume that was the case with Chuck Klosterman.

Public Learning about ACOs

"Culture beats strategy every time" is a truism in management consultation. The Accountable Care Organization concept is excellent strategy, but it won't get anywhere if our health system culture doesn't support it.



This morning I was happy to see a front page article in the New York Times about how Advocate Health Care is developing its ACO. The article is clear and informative. But the amateur medical anthropologist in me was struck by what the language reveals about the cultural context within which ACOs will thrive or crash and burn. In what follows, snippets from the article are in italics, followed by my editorial comments. I've highlighted key phrases - all of the emphases are mine:

On a stormy evening this spring, nurses at Dr. Gary Stuck’s family practice were on the phone with patients with heart ailments, asking them not to shovel snow. The idea was to keep them out of the hospital, and that effort — combined with dozens more like it — is starting to make a difference: across the city, doctors are providing less, but not worse, health care.

In recent years I've been careful to shovel snow slowly and not to overload the shovel. If I was one of Dr. Stuck's patients I would have appreciated a call from the nurse. But note the assumption that less care is likely to be worse. As a physician who practiced for 43 years my default view is that less is better/more is worse. Many of my colleagues think the same way. ACOs won't succeed unless we can nudge the wider public into understanding that "more" does not equal "better" and "less" is often an improvement!

For most health care providers, that would be cause for alarm. But not for Advocate Health Care, based in Oak Brook, Ill., a pioneer in an approach known as “accountable care” that offers financial incentives for doctors and hospitals to cut costs rather than funnel patients through an ever-greater volume of costly medical services. Under the agreement, hospital admissions are down 6 percent. Days spent in the hospital are down nearly 9 percent. The average length of a stay has declined, and many other measures show doctors providing less care, too.

Insofar as the kind of integrated care ACOs are designed to promote is the right way to deliver care, the changed payment structure is removing a barrier to doing the right thing, not "incentivizing" us like rats in a maze. I don't think I'm alone in finding all the talk about "incentivizing physicians" to collaborate with their patients and colleagues offputting. And if I were a naive patient I'd be suspicious of care that my doctor had to be "incentivized" to provide!

“It’s hard to imagine that you could start from scratch and do this and be successful in three years," said Dr. Lee Sacks, Advocate’s chief medical officer, noting that other systems may find it far harder to flip the traditional fee-for-services system on its head. “We had a running head-start going back to 1995.”

The organizations that joined in 1995 to create Advocate have a 100 year history of faith-based health care. As a non-Christian I found the Advocate mission inspiring. I would be proud to practice with colleagues who shared the values Advocate promulgates. I wish the article had taken the following great quote from Dr. Sacks that I found on the Advocate website:

"There is just a special feeling throughout Advocate Health Care. We regularly recognize those who exemplify our values of compassion, equality, excellence, partnership and stewardship, even though many of them would say that they were just doing their job.”

A piece of cheese at the end of a maze isn't what "incentivizes" health professionals - it's the privilege of being part of a caring profession whose values go back for millennia! The admirable clinicians Dr. Sacks is talking about would be stunned to be told that their comportment reflected economic incentives, not personal mission!

In some ways, accountable care resembles earlier efforts to control medical spending, including the health maintenance organizations that proliferated in the 1980s but fell out of favor, in part because they severely limited patients’ choices. But accountable care differs by giving doctors and hospitals a direct financial stake in saving money and a reason to invest in various programs of preventive care rather than relying exclusively on the fees they would normally earn from providing services.

This snippet tip toes towards getting the culture issue right, but it still misses the crucial point. Capitated payments facilitate investment in programs (and not just for prevention) that are not paid for in our cockeyed fee-for-service/widget-rewarding payment system. But that's not what gives doctors a "reason" to invest. The reason is that it's the right thing to do in light of a mission that even many athiest clinicians regard as "sacred."

So far, Advocate has achieved a small but significant savings of about 2 percent below projected costs, Blue Cross Blue Shield said, but it is not clear whether it can continue to make progress. Already, some Advocate hospital chiefs have expressed fears over losing revenue and warned about the threat to their financial performance. Doctors fret that their incomes may suffer. “We’re doing it because it’s the right thing to do for patients,” said Dr. Stuck, the Advocate family physician. “We’re not making more money.”

Dr. Stuck's point about doing the right thing speaks for itself!

“You’re trying to overlay a payment design onto a benefit model that allows a patient to go anywhere he wants,” said Steve Hamman of Blue Cross Blue Shield, noting that patients can undermine the advantages of the new approach if they ignore the advice or insist on unnecessary tests and procedures. “We can talk all we want about provider accountability and how important that is. But there is a measure of patient accountability that is critical as well.”

For readers who aren't familiar with the ins and outs of the ACO concept, this paragraph is referring to the fact that Medicare beneficiaries who are receiving their care from an ACO aren't "locked in" to the ACO network. If Dr. Stuck's patients want to go to the Mayo Clinic they can do so. This is likely to create clinical, economic and ethical challenges for ACOs. What if the Mayo Clinic does knee replacements better than the ACO? Do we have to refer patients "out"? What are the acceptable ways for ACOs to try to keep patients "in network"? And, most important, how do we engage patients and the public in seeing stewardship of shared resources as a societal imperative they share responsibility for?



We Yanks believe in magic bullets. That's why we have so many drugs in our medicine cabinets and drones in the sky. ACOs, alas, will not magically solve our health "system's" problems of quality and cost. The ACO is a good concept, but it won't thrive without a supportive culture. The otherwise excellent article in the New York Times shows how far we have to go to develop the culture we need!



(See here, here, and here for posts that discuss related aspects of the ACO concept.)

Should You Kill Your Disabled Child?

I've just read a remarkable book about this question: Rescuing Jeffrey, by his father, Richard Galli. I got to the book via "Calling It Quits: When Patients or Proxies Request to Withdraw or Withhold Life-Sustaining Treatment After Spinal Cord Injury," an article assigned to Harvard Medical School students for this week's class on end of life care in the required course on "Medical Ethics and Professionalism."



On July 4, 1998, Jeffrey Galli, 17 at the time, dove into the shallow end of a swimming pool and fractured his neck, injuring his spinal cord in a way that left him quadriplegic and unable to breathe without ventilator support. Richard saved his life by pulling him out of the pool and breathing through his nose. But when Jeffrey got to the Hasbro Children's Hospital in Providence, Rhode Island, and the extent of his injury became clear, Richard and his wife Toby considered whether the right thing to do would be to withdraw treatment and let Jeffrey die.



Galli renders the anguished flow of his thoughts and feelings in admirably spare prose. Not surprisingly for a 17 year old, Jeffrey had given no guidance about he would want to have done in a situation like the calamity he experienced. In his initial state of unconsciousness, and the next few days of impaired awareness, his parents had to make decisions for him. Galli initially felt that Jeffrey - a very physical boy who was not drawn to reading or other forms of "living in his mind" - would not be able to tolerate the helplessness and immobility of quadriplegia. But he recognized that he wasn't a reliable decision-maker. Perhaps he was the one who couldn't tolerate Jeffrey's condition. Galli conveys the way thinking about Jeffrey mixed with projection onto Jeffrey brilliantly. At one point he imagines pulling the plug on Jeffrey and then committing suicide himself!



When Jeffrey started to regain consciousness and began to fathom what had happened, his first reaction was "I want to die." But over the course of the ten days Galli's narrative describes Jeffrey first oscillates between wanting to die and wanting to live, gradually settling on the will to survive.



Galli provides a service to clear thinking by using harsh words to bring out harsh facts. For him the question isn't whether to "withdraw medical treatment from Jeffrey" but whether to "kill Jeffrey." In part, making that choice would have been an act of love - sparing his son from the suffering that he expected would be Jeffrey's fate. But in part the choice would have reflected his own suffering at the loss of a son with mobility. For that reason. "killing" wfelt to him like the right word.



The crucial help Galli received was from a physician whose name he does not give and who was not part of Jeffrey's ongoing treatment. The physician conveyed that the life vs. death decision didn't have to be made now. If Jeffrey decided in the future that life in a wheelchair with no use of arms or legs and no ability to breath on his own was not worth living, he could have the ventilator withdrawn. Galli concluded that letting the treatment proceed was not committing his son to a life of unwanted suffering.



The book is painful to read, but once I picked it up I couldn't put it down.



(Jeffrey completed high school and then college. For an article about him at the University of Rhode Island, see here. For a video of Jeffrey and his younger sister Sarah in 2012, 14 years after the accident, see here. And for a post I wrote about an adult patient with quadriplegia who elected to have his ventilator turned off, see here.)