A Meta Realization

Writing usefully about philanthropy is very hard. Since I left my former Writing is Hardposition, many times I’ve sat down to apply what I learned in my eighteen years in the field to current goings on and each time I’ve been stymied. ‎ Writing from the outside (especially while job hunting) really drives home the power differential in a visceral way. Saying meaningful things about the work of powerful and mysterious foundations is scary.

This is especially true because it’s hard to get enough information to have an informed view. Few funders make grant proposals easily available, much less the internal documents that would explain the strategies, issues, and broader context as seen by the funder. If I wanted to critique or praise a particular grant, I would have a very hard time in doing it in a knowledgeable and productive way, even after only five months out of the business.

I understand better now why we had such a hard time getting our grantee community at The John A. Hartford Foundation to engage with us when we started our blog, Health AGEnda. What could they say that wouldn’t be obsequious or potentially dangerous?

No wonder that majority of what is written falls into a few hackneyed categories:

  • The “Wow that’s a BIG . . . grant” story.
  • And its extension, the “Wow that new funder has lots of money and is going revolutionize everything.”
  • The knee-jerk “I hate this grant” (because ignores my issue), which at least has the virtue of showing courage, if not usually much insight.
  • And finally, the look back in sadness/anger, when results have failed to materialize.

Despite a few bright lights from the rigorously empirical and well-informed, such as the Center for Effective Philanthropy and Grantmakers for Effective Organizations, most of what’s written about grants and grantmaking just doesn’t get at the key questions about how grantmakers and grantseekers can do better together to solve our urgent social problems.  But if we are going to cut back on long-after-the-fact stories of missing results, we have to be able to talk about specific projects and grantmaking process.

In the next few weeks, I’m going screw up my courage to the sticking point and try to take on some issues in philanthropy, such as sustainability, strategy, and partnership.

Stay tuned.

REPRINT 2010 – Challenges of a Long-Distance Caregiver

My parents and my aunt represent two ends of the aging spectrum.  My parents fall into the category of “healthy,” independently living older Americans.  That is, while they have fairly serious multiple chronic illnesses and increasing impairment (arthritis, blindness, hypertension), they are moving through their seventies still coping pretty successfully.  My aunt, on the other hand, represented an increasingly uncommon demographic: an early death in her sixties from an untreatable acute illness.

My Uncle Hubert Langston is something else.  All his life he has been something else–a wild child, a hell-raiser, and a black sheep.  Now at 68 he is the proverbial train wreck.  He has hepatitis C, Parkinson’s disease, and diabetes, he is deaf, and he has end-stage renal disease requiring dialysis two or three times a week.  I’m sure there is more, but I think that’s quite enough.

Uncle Hubie lives in a house he bought a few years ago with his wife, about 90 miles South of Las Vegas, right on the Arizona border.  He is retired, living on social security. His wife, who also has serious health problems, still works in a clerical job in the gaming industry. Their adopted son Billy was a soldier deployed in Iraq when this was happening.

In the summer of 2008, my uncle had been in a steady routine for several months. He took the bus to his dialysis appointments, made dinner for his wife, Aunt Christie, and watched TV – which I suspect may be improved without the sound, anyway.  But this stability was shattered when he came home from dialysis one day ranting and raving and then ran out of the house, seemingly out of his mind,.  My Aunt was obliged to call the police out of fear for his safety, and they took him to the local hospital.

There he was physically restrained (probably necessary), put on the tranquilizer Haldol (vitamin H as it is known in the business), but not dialyzed.  He was diagnosed as having overnight-onset Alzheimer’s disease: a largely imaginary condition.  No one on his medical team seems to have considered the well-known difficulty in maintaining electrolytic balance while on dialysis or its possible cognitive side effects.

This precipitated a fairly typical family crisis – Aunt Christy feeling overwhelmed and guilty, my Dad in California feeling guilty and overwhelmed, leading to my Dad asking me to “go out to Nevada and help out.”  Despite being a first-born parent pleaser, I know my own limits of knowledge and patience.  I declined and adamantly insisted that we hire a locally knowledgeable geriatric care manager.  It took some ranting and raving of my own and forwarding of various links, but we found someone who seems to have been helpful.

In the process, I explored the Nevada Aging and Disability Resource Center website.  A more pitiful collection of outdated links, dead ends, and unavailable services would be hard to imagine.  There was literally nothing helpful I could find.  Google was much more useful, leading to a professional nurse care manager we hired from a firm operating in Southern Nevada.  [Since these events, the website has been redesigned and looks much more useful.]

In the meantime, having diagnosed my uncle as having Alzheimer’s disease and deciding there was nothing more that could be done for him (the infamous Medicare improvement standard), the hospital gave the inevitable Thursday afternoon warning of a Friday discharge.  The plan took my aunt totally off guard: “But they haven’t done anything for him!” she wailed.  They proposed discharge to a far-off skilled nursing facility with the rare combination of dialysis and psych capacity.  However, my aunt was inconsolable; even in the short term she feared the placement would either split them apart and/or cause her to lose her job.  The nurse care manager got busy working on a better placement and asked the hospital for more time.

Meanwhile, while Uncle Hubie was clearly still in an acutely altered mental state, it seemed very unlikely to me that he had Alzheimer’s, which has a gradual onset.  It seemed more likely to me that he was delirious as a side effect of the dialysis or even underlying kidney failure and the hospital and attending physician had just started making stuff up.  By turning to resources at the Medicare Rights Center, I learned more about patient rights and hospital discharge than I had previously been motivated to master.

It turns out that on paper, the Medicare discharge appeals process is very good.  Like most of Medicare it is designed by very sincere government employees who are trying their very best to look out for the interests of the beneficiaries.  So I called my Aunt and told her how to appeal the discharge.  She asked me to do it for her.  So I dutifully called Nevada’s Quality Improvement Organization responsible for managing discharge appeals for CMS.

Unfortunately, implementation of policy is often not so good.  Their telephone number wasn’t answering, their answering machine was full, and their server kicked the e-mail back to me.

Turns out it didn’t matter anyway, Uncle Hubie wasn’t hospitalized in Nevada!  He was just over the border in Arizona.

My newly acquired caregiving assertiveness was for naught.  In a few days, he was transferred to the skilled nursing facility and after a month to another one closer to home.  The care teams in both places were sure he was there for good and got my aunt working on Medicaid applications right away.  However, without there ever being any brilliant diagnosis or breakthrough treatment, Uncle Hubie gradually got better.  His delirium cleared and some light physical therapy (i.e., walking) helped him recover strength lost while being immobilized and inactive.  He did have some wild times when minor but stubborn infections and changes to his medications seem to have caused his delirium to return. But, with the monitoring of the geriatric nurse care manager and support from Aunt Christy, he finally returned to a normal mental state and came home–after more than two months.

A happy ending, yes, but the relatively good outcome seems much more an accident (even a miracle) rather than a predictable process you would want to count upon.  And I shudder to think of the expense in uncovered services and co-pays, much less what Medicare paid.  My Dad (Hubie’s brother) covered the care manager who helped paste together systemic dysfunction and put a band-aid on the incompetence of others.  Is this the system we should have?  What should I have done?  What should I do now?

Post Script

Several years had already passed after these events when I first wrote about them.  In the years since, my Uncle Hubie chose to stop his dialysis treatments (as do many)  and passed away.  Even with the most appropriate care there are many limits to how well people with serious illness can be served and supported.  These limits and the inevitability of death, should not be an excuse for less than competent care while people still live.

Short of Geriatricians? Been there, done that, got the t-shirt (and little else)

Recently I was interviewed for a Kaiser Health News/NPR story on overcoming ageism in medicine and promoting geriatrics by exposing students to older adults during medical school. The story was syndicated, I got a quote, and my former employer got a media hit – and all was right with the world.

KHNNPR HeadlineEfforts to introduce relatively healthy older adults to medical students can “reduce the sense of futility and show [the students] that there are real people with real lives who can benefit from quality health care,” said Chris Langston, program director at the John A. Hartford Foundation, which focuses on aging and health. Langston has been analyzing the trend for the past several years.

But . . .

The reporter Susan Jaffe is excellent and was really excited about the session she had seen at Case Western Reserve School of Medical where a panel of older adults over 90 had talked to the medical students about their lives, their health, and their needs. The title of the article and its tone strongly suggests that this is a new kind of program and that it will work “to sell medical students on the joys of geriatrics. As I was talking with Ms. Jaffe and telling her about this kind of program and what had been done before, I felt a wave of déjà vu and previously disconnected thoughts crystalized and my heart fell as I realized that we can be quite sure it won’t.

The reporter wanted to tell the story she wanted to tell, and left most of our conversation and most of the information I provided her out of the story. But the disappointing truth is that programs like this one aren’t new, have been tried extensively, and don’t seem to have had much impact.

Between 1999 and 2005 my former employer made 40 grants of $100,000 each to medical schools in the US to increase exposure to geriatrics in the curriculum and many used this kind of low-cost training experience.  Many went even further and created outstanding senior mentor programs where medical students would be paired with older adults living nearby and would meet regularly for a year or even four years with a series of planned exercises (e.g., history taking & medication review). These programs humanized older people to the students so that they weren’t just GOMERs in hospital beds and helped teach a variety of key interpersonal and pragmatic skills, typically provided by “doctoring courses.”

The Donald W. Reynolds Foundation program in geriatrics education started shortly after our AAMC program and was broader but undergraduate medical education was still its sweet spot. It provided $3M! each to 40 schools over the years 2001 and 2008 ($2M of foundation cash, but $3M for geriatrics when you count the very strict $1M local match requirements).  And, of course, for the academically minded future physician, the John A. Hartford Foundation was growing its summer medical student geriatrics program through the American Federation for Aging Research, supporting a couple hundred students each year in a clinical and research experience.

Understanding the impact of education on competence, career choice, and patient outcomes is really hard. The delays are substantial and measures of competence are weak.  The Case Western experience isn’t expected to make all attendees into geriatricians, nor were the interventions sponsored by The John A. Hartford Foundation or the Donald W. Reynolds Foundation. But it is hard to believe that if the experiences were effective in showing students the value of geriatric care and its personal and professional rewards, that we wouldn’t see some blip in enrollment in specialized fellowships when students finally finish medical school and residency and make further choices.

But when you look at the annual chart of graduating resident physicians choosing to specialize in geriatrics you don’t see any uptick in the 6th or 7th year following the start of these efforts. Looking at the chart, any effects would start in 2005 when 4th year students who had gotten some exposure would be deciding on fellowship.  The effects should have strengthened over the next few years as students who were earlier in training got more and more exposure and could shift their residency choices as a precursor to their career choice. However, as the graph below shows, the lines in these periods are definitely flat or falling.

2014 Fellows Numbers Blog

It might be nice to think that new programs like the one reported in the media could turn the tide, but we’ve been there, done that, and all we have is the t-shirt, not the workforce we wanted.