Bread is life

My gift for Jeanne

When Jeanne retired just a little over seven years ago, we looked forward to new adventures - some travel, some leisure, maybe a few new hobbies. 

Endless possibilities.

I gave her a copy of the cookbook by Alice Waters, "In the green kitchen." Jeanne never really cooked much. I was happy to take on that chore when we married, but she often said she'd like to learn (from somebody that wasn't me). This book seemed like a good way to help get her started.

Our new adventures weren't what we expected - they turned out to be the kind of chills and thrills you get with a diagnosis of a life-limiting illness, in Jeanne's case, mild cognitive impairment that progressed to Alzheimer's. She died less than 6 years after she retired.

Two years ago I planned our last trip together to a cottage on Buzzard's Bay where we vacationed each summer.

I contracted with Community Nurse Home Care in Fairhaven for private care givers who stayed with Jeanne 4 hours every day, while I took a break, did some errands, and otherwise tried to figure out what we else would need in the coming months.

I recently visited with some of the people there who helped us, to give them a long-overdue "thank you." I brought along a fresh-baked loaf of bread, using a recipe by Jim Lahey featured in Water's book.

Lahey's "no-knead bread" is also one of the most popular recipes to appear in the New York Times. Rather than repeat the simple steps, here's a link.

And here's a loaf I made.

Bubba's dumb RASS

We can use RASS to more clearly describe someone's level of consciousness and psychomotor activity.

   

Links:
Ely, et al - ICU Delirium and Cognitive Impairment Study Group
Inouye, et al - Hospital Elder Life Program (HELP) for Prevention of Delirium
Ganzini - Care of patients with delirium at end of life
Fong, Tulebaev, Inouye - Delirium in elderly adults: diagnosis, prevention, and treatment

Previous posts on delirium:
Still more delirium
Something about delirium
Something else about delirium
Some more about delirium  
First steps to comfort: A-T-E-N-T
Again with the delirium

Still more delirium

Because we can't talk about it enough. This clip explores three types of delirium, based on their clinical presentations; and the incidence of delirium in selected health care settings, including at end of life.

 

Links:
Ely, et al - ICU Delirium and Cognitive Impairment Study Group

Inouye, et al - Hospital Elder Life Program (HELP) for Prevention of Delirium

Ganzini - Care of patients with delirium at end of life

Fong, Tulebaev, Inouye - Delirium in elderly adults: diagnosis, prevention, and treatment

Previous posts on delirium:
Again with the delirium

Something about delirium

Something else about delirium

Some more about delirium  

First steps to comfort: A-T-E-N-T

A good nurse could be a good journalist, or the other way around

My daughter and I recently exchanged several texts that included links to some work by Ta-Nehisi Coates, writing for the Atlantic monthly. I called her attention to this deep, difficult, painful, powerful, and essential piece, "Donald Trump is the First White President."

"It is often said that Trump has no real ideology, which is not true—his ideology is white supremacy, in all its truculent and sanctimonious power."

I've read it once to the end. Some passages were confusing, even after several attempts, so I need to go back and keep trying. Others, like the one above, cut as cleanly and quickly as a new scalpel.

My daughter responded with this video of Coates describing what led to his career in journalism. 

It's easier to approach than his current piece on the president*, or his earlier one from January, "My President Was Black." It's maybe a better place to start.

Watching it reminded me of a conversation I had back in the early 80's, when I had just started the second part of my nursing career selling software to hospitals for the now-defunct Burroughs Corporation. 

I was in Charlotte, North Carolina, where the company had established the headquarters for its ill-fated effort to develop and support hospital applications for admissions, medical records management, patient accounting, order entry, and so forth. I was there with my branch manager and several others from the company, hosting a site visit for our customer, a large community hospital near Boston. 

The hospital entourage included their VP's of Finance, Nursing, Quality Assurance, and Information Management, as well as another half-dozen non-VP's. We rented three stretch limos for the three day stay, which included some serious business, and even more drinking, partying, and general boondoggling.

The hospital was an installed account using some of the company's earlier software on less-expensive hardware. We really had no chance of keeping them - our products and services were terrible for many reasons. But we spent a lot of money going over the falls, and managed to have a pretty good time on the company dime. 

We were all sitting by the hotel pool late one night, after an extended road trip where our instructions to the limo drivers was, "You pick the place." They had taken us deep into the woods, I think into South Carolina, to a large roadhouse for too much beer and some mud wrestling.

The VP's of Nursing and QA and I talked about nursing, and how we had each gotten to that place by the pool. I don't recall much else, but I do remember saying how I believed that the skills and temperament required for being an excellent nurse were quite similar to, no - EXACTLY LIKE, the skills and temperament needed to be an award-winning journalist or a killer international spy.

I believe they humored me. I thought it was profound at the time, though of course it was mostly the mud wrestling talking. 

I never really thought about it again, until I watched the clip my daughter sent.

"So much of the pain is what's in your head," Coates says. So much of our fear is in what we imagine. Taking that first step is what really counts, because then they begin to lose their foreboding, until we're walking right along with the people we care for. 

Burroughs now exists in a smaller version that, as far as I know, has nothing to do with computer hardware or software for hospitals. I don't know what happened to my nursing companions after that trip, and after we lost the account.  

Anyway, that's what I was thinking about earlier today. That spy thing was just foolish.

What's the point? Good question!

Shiny happy people dying*

Last week an astute reader asked this question about the post featuring my conversation with Boo Boo (paraphrasing): "What's your point?"

I'm glad she asked. Not because I had an answer, but because I really had to think about her question.

Poking through the 990's

My initial response: There's a tool called IRS Form-990 that can help us begin to 'unpack' (her term - I like it) some elements of a non-profit hospice, specifically their finances, governance, and mission. Non-profit organizations must submit this information every year to justify their tax-exempt status.

I tried out the tool by selecting a small sample of data submitted for 2014, and comparing it among several hospices I'm familiar with - service revenue, net assets, CEO total compensation, employee count, and the number of other employees who earned over $100,000.

I think service revenue describes the organization's size and activity, and is a decent proxy for the number of admissions and average daily census, since big agency = high service revenue. The employee count also relates to agency size.

I chose net assets as a way to assess an agency's wealth, since that's where I think an organization usually parks any surplus revenue remaining each year after expenses are paid.

It's also where the value of other assets like buildings are accounted for, after subtracting liabilities like mortgages or bonds.

Executive compensation has been a hot topic since it started climbing in the corporate world during the 80's. The latest survey for 2016 shows the top 10 corporate executives earned $94.6M at the high end, and $37M at the low, with an average of $19.3M for the top 200.

That's a lot of money, even for someone at the top of an organization, and begs the question: What did they do to earn it?

Finally, I thought it would be interesting to see how many others in the organization were "highly compensated," which means $100,000 or more; and who they are.

Important caveat - I'm not an accountant, and don't pretend to be. I took a basic course on management control in healthcare many years ago because I had to understand income statements and balance sheets, if only in the simplest terms.

Is this hospice any good?

So, a more complete answer to the question, "What's the point?" goes something like: "I'm curious if this kind of information says anything useful about a non-profit hospice."

If there's a bottom line to my exchanges with Boo Boo, it includes the questions - “Is a particular hospice any good? How can we know? How can we find out?”

Look elsewhere

The astute reader pointed out a different source to help answer these questions - an agency's Medicare Cost Report. She noted the data was harder to access than Form-990, but could more directly identify money going to specific services like bereavement support and patient medications, show what's spent on clinical versus administrative staff, and so forth.

She also said my attempt to assess the quality of care by looking at financial information was "a dubious proposition overall."

I understand. Trying to figure out if a hospice is any good isn't just a matter of putting together a puzzle. It's more like trying to put together several different puzzles at the same time, trying to see if they relate to each other or make sense, and trying to do so when the pieces are all mixed together in boxes that don't even have any pictures that could be useful guides.

Pro Tip for hospices - avoid stock photos

Unless we mean pictures like the one above, which I found on the Vitas website. A quick image search on Google brings up an assortment of stock images from Getty in a selection titled, “african american man helping elderly.”

My mother used to say, "Follow the money. In the end, no matter what else they want you to believe, it's always about the money."

I didn't listen to every piece of her advice, but that lesson stayed with me. Form-990 may not say anything obvious about the quality of care at a given hospice, but I think it shows us something important about an organization, and can even lead to some informed conclusions about its culture and values.

Remember WaPo?

I didn't get my hands on any Medicare Cost Reports, but I did recall that in 2014 the Washington Post put together a Consumer Guide to Hospice based on Medicare Cost Reports and other data.

I also remember how the WaPo Guide, and the series of reports about hospice of which the Guide was a part, generated a fair amount of commentary in the hospice community.

Dale Lupu wrote an excellent analysis of the Guide's usefulness in Pallimed, and suggestions on how to interpret or supplement the information. I gave him my two cents in a comment.

But in re-reading his piece I was struck by his comment that Medicare Hospice Cost Reports, "have all kinds of issues in how data is reported."

I don't know what those issues might be, or what that means, but it's not exactly comforting.

Where else can I get the kind of information that could help me and Boo Boo find an answer to our question, "Is this hospice any good?"

Medicare's Hospice Compare

Just last month, Medicare launched their Hospice Compare website in an attempt to help me and Boo Boo, and anyone else who might be asking those same kinds of questions.

The idea is simple - enter the name of a specific agency, or pop in a zip code to get a list, and the site responds with a report card that shows how often (how well) an agency addresses pain, dyspnea, and constipation; and whether or not they ask about preferences for care, along with values and beliefs.

I can't say I'm impressed. The questions are pretty basic. If this was about commercial airlines, the data would show things like the percentage of passengers who were seated at takeoff, and whether or not a pilot was also on the flight.

A story in MedScape uses the term, "skeletal," to describe the site.

Another criticism sounds like something Garrison Keillor might say. It seems all of the hospices are above average. A hospice medical director who also participates in national discussions about quality says, "If one hospice is 94 percent and one is 92 percent, you don't really know that one hospice is somehow a lot better."

With that said, I think Hospice Compare's best and most helpful feature is a list of helpful questions (pdf) families can ask an agency, including two that I've found are very important:

• How many patients are assigned to each hospice nurse?
• Will I have the same hospice nurse?

Finally, I was visiting a friend recently, and learned she's been an avid reader of Consumer Reports magazine for years. The issue for October, 2017 includes a piece on assisted living and elder care. I wondered if they'd done anything on hospice, and sure enough...

What's the point?

To get back to my astute reader's original question - 

I have an advantage when it comes to assessing the quality of care among different hospices, at least in my little corner of the world. I've worked with several as a nurse, educator, and caregiver spouse. I keep in touch with colleagues, and track the stability of staff, or lack of it, along with other activities at the many hospices competing in Eastern Massachusetts. It's sort of a moving target, but the general range is between fifty and sixty (50 and 60!) agencies in this service area.

When people I know ask for my opinions or suggestions, I'm comfortable telling them what I think and what to look, and look out, for. It's very subjective, and I don't share those thoughts more widely because I don't think that's right.

Another astute reader said the public needs, "a hospice comparison tool that takes into account all of these crucial-to-our-experience data."

They're both right, and maybe that's the most important point.

===

*apologies to R.E.M.

Assessing patients who can't communicate their pain

Pain is common in people with dementia, but assessing hospice patients who can't communicate their pain is almost impossible. Here are two validated assessment tools that can help.

Links

• The modified Mini Suffering State Exam
• A-T-E-N-T: A prescription to relieve suffering that's inexpensive, easy to use, and has no bad side effects
• The hierarchy of pain measures, in Pain Assessment in the Nonverbal Patient:Position Statement with Clinical Practice Recommendations (pdf)
• The Checklist of Nonverbal Pain Indicators (CNPI): testing of reliability and validity in Norwegian nursing homes
• McGuire, et al - MOPAT (PubMed)

Boo Boo talks $$ and non-profit hospice

"Also, too: send flowers while someone's still alive to enjoy them."

I haven't had a chance to talk hospice with Boo Boo since earlier in the month. She stopped by yesterday, and agreed to share her thoughts after a piece of cheese, some peanut butter, and a few minutes of scratching behind the ears.

"I'd like to change the subject a bit, and turn to the non-profit hospice world," she said while settling on my lap. "They use money, too."

"Here's the thing - publicly-traded for-profit hospice companies have to file financial information and other disclosures with the SEC. It's all there, but you have to dig. It also helps if you're a lawyer or an accountant, or both. An MBA doesn't hurt, either."

I know what she means. It can be a real challenge to just read through a company's annual report, and while they also provide plenty of information and links at their websites, it's like having someone lead you down to a huge basement filled with filling cabinets and saying, "Go for it," before they head back up the stairs quietly chuckling to themselves.

Warren Buffett writes an informative and very readable letter to shareholders that's included in Berkshire Hathaway's annual reports that help explain his thinking as well as the business. But not everyone is Warren Buffett.

Boo Boo agreed, "That's when an investment advisory service might be helpful. Of course, you have to trust their work, and also hope they're not talking up a company they also have an interest in. People get very weird when there's money involved. That also includes analysts who follow companies."

"Sometimes, you can find a resource that's either more clearly independent, or that tempers the rosy picture corporate executives like to paint. But always remember 'buyer beware' and 'do your due diligence' when it comes to stocks and other financial investments. And none if this is intended to be advice of any kind. I'm a freaking dog, after all."

I reminded Boo Boo that she wanted to talk about non-profit hospices.

"I know, I know. Relax. I'm getting to it." Boo Boo can be kind of prickly sometimes.

"Here's that thing - non-profit organizations still have to file with the IRS, using Form-990. They have to disclose their financial information, describe their mission, and report who's getting how much money - executives, key employees, vendors, and the like. They also have to talk about their fundraising, and how they're governed. The whole point is to make sure they deserve their non-profit status, and that they're not engaged in sleazy acts like self-dealing. You'd be surprised at how some people use a non-profit organization for their own benefit. Disgusting." Boo Boo spat on the floor.

I wiped up the cheese/peanut butter spit as she continued. "The information on the 990 is much more straightforward and easier to understand. It's a little bit of work, but not much. It helps to understand basic stuff, like what an income statement and a balance sheet are. But it's not rocket science."

"Non-profits have to make their 990's available to the public. Some make it easy and post them as pdf's on their websites, like two of my favorites - Partners in Health and Doctors Without Borders. That's true transparency."

I told her I haven't found a non-profit hospice that's included a 990 on their websites. How can I get the information?

"You probably have to call them to make an appointment, then go to the office and read the paper copy. Some might be happy to accommodate, but if they're not making it easy, it could be because they're lazy, or just don't want people to know."

That didn't sound promising.

"There's another way," Boo Boo said. "Sign up for an account at a service like Guidestar. They sell detailed reports, but you can look up any organization's recent 990's for free. Now please excuse me, it's time for a nap."

Boo Boo closed her eyes and was sound asleep in a minute. I eased her off my lap, signed up with Guidestar, and started poking around.

I thought I'd compare several different agencies I'm familiar with, either as a former employee or spousal caregiver. Here's what I found for 2015, with some notes and disclosures following. Click the image to enlarge...

Notes
Care Dimensions lists 1 employee over $300,000 and 7 over $200,000 of their 10 most highly compensated. All are senior executives and/or physicians. The CEO in this Form-990 has retired.

VNA Care Network information also includes home care services. They merged with/acquired VNA Boston (scroll), which filed a separate Form-990.

Parmenter was acquired by CareGroup in 2015.

Community Nurse information includes home care services. The CEO in this Form-990 is no longer with the agency.

Seasons Hospice is a privately-held for-profit agency based in Illinois, and is not required to file with the SEC. Financial information is not available. They established the Seasons Hospice Foundation to "raise funds to help cover the cost of special acts of kindness." (link) The organization's mission is stated on Line 1, "Support end of life care for individuals with limited means as well as sponsor educational programs regarding end of life care and the role of hospice in this process."

The total grants paid was $102,586 (Line 13). The revenue listed above is the sum of contributions and grants ($863,762 - Line 8), and investment income ($134,941 - Line 10). The net assets listed above reflects total assets ($6,207,798 - Line 20) minus reported liabilities ($6,101,073 - Line 21). Liabilities include $3,815,212 as secured mortgages and notes payable to unrelated third parties (Part X Line 23), and $2,187,452 as other liabilities (Part X Line 25). This amount is also listed on Part X Schedule D as "due to/from affiliates." Salaries, other compensation, and benefits is listed as $308,226 (Line 15). This was a pretty complicated Form-990 for me as a non-accounting type person.

The Organizations
Care Dimensions
VNA Care Network and Hospice
Good Shepherd Community Care
Parmenter Home Care and Hospice
Community Nurse Home Care and Hospice
Seasons Hospice Foundation

Disclosures
I was employed by Care Dimensions and Good Shepherd as an RN hospice case manager, by VNA Care Network and Seasons Hospice as a hospice educator. I was a spousal caregiver and received services for my wife, Jeanne, from Care Dimensions (palliative care), Community Nurse (home health aide), and Parmenter (hospice).

My profile on LinkedIn

I am currently providing services under contract to Good Shepherd.

I own shares of Berkshire Hathaway (BRK-B), and am a member of the Motley Fool.

Update: Argh! I'm having trouble sizing the spreadsheet so it's readable. My latest attempt is to export it as an image, but it still acts weird and looks tiny. I'm going to try a few more things...