Wednesday, August 30, 2017

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...

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

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...

Monday, August 28, 2017

Again with the delirium

Here's another excerpt from one of the delirium videos, this time narrated by everyone's favorite with the BBC voice, Adam Wheeler. 

This one asks and answers:

What's the difference between delirium and dementia?
Why do we care about delirium?


Delirium is the single greatest threat to comfort at end of life, and the single biggest obstacle to a peaceful death. If you know how to consistently identify and manage delirium, or even better can prevent or minimize it, you're well on your way to being an awesome clinician or caregiver for patients and families facing serious illness and end of life.

Previous posts on delirium:

Monday, August 21, 2017

Some more about delirium

IMO, we can never talk enough about delirium.

Here's a rough cut excerpt from a video in progress. The narrative is organized around a series of questions. The two for this excerpt are:

What is delirium?

What causes delirium?

As always, your feedback is important and welcome.

Links to the resources described in this video:
Thanks for reading! See you next time.

Thursday, August 17, 2017

Wed's clip on Thu: First steps to comfort

Here's a construct I call, "A-T-EN-T," a set of non-medical measures we can all take to relieve suffering and promote comfort. They're simple to learn, teach, and use; safe; cost next to nothing; and have no bad side effects.

I'd love your feedback.

Friday, August 11, 2017

That's the word

"Not plastics. Fast Facts!'"

I recently read a post by an experienced nurse who was both eager and apprehensive about starting her new job in hospice. She wanted some advice, and probably a little  encouragement.

She could be making the worst mistake of her life, though I hope it's not the case, and doubt that it is.

I have no data, but it seems to me that a nurse with a diverse clinical background has acquired a rich set of skills for working with patients and families facing serious illness and end of life. A nurse not just out of school also seems more likely to have the kinds of life experiences, including death and loss, that can inform the best care.

The simple act of her reaching out counts for a lot.

Since she framed her request as, "What's the one (best, most)...?," I suggested the wisest, richest, most coherent, informative, credible, and accessible clinical resource I have ever encountered - Fast Facts.

I've used Fast Facts to read up on a topic I wasn't familiar with, like pseudoaddiction (#69), or the use of psychostimulants (#61).

I've turned to them for help, like the first time a patient presented with an implanted defibrillator (#112), and have shared them with the team, like that time we were challenged by the angriest patient any of us had ever seen (#59).

A colleague often tried to bring them to the attention of her part-time medical director at team meeting, though unfortunately without success. The agency only hired physician contractors who knew nothing about palliative and end of life care, and who strictly adhered to their 3-S Model: Show up, Shut up, and Sign.

I've even used Fast Facts for patient education with a dual-PhD couple, both highly-qualified in math and physics, and experienced as teachers, researchers, consultants, and textbook authors. They were completely involved in their care, and not inclined to just accept advice or follow directions.

One spouse had advanced cancer of the small intestine, and had already experienced two acute obstructions when they came on service. Pain was not well-managed with transdermal fentanyl and oral oxycodone prescribed by the oncologist - the patient had been applying and removing 25mcg patches as often as every few hours, and didn't keep track of how much oxycodone was being used.

We developed a plan to better address pain, along with persistent low-grade nausea and the risk of further obstruction, including scheduled oral glycopyrrolate, haloperidol, and methadone.

When we sat down to review the plan, I had already printed out Medical management of bowel obstruction (#45) , Causes of nausea and vomiting (#5), and both Methadone for treating pain (#75), and Dosing methadone (#86).

I told them the team used Fast Facts as one resource for developing the plan. They carefully read each of the single-page/two-sided documents, looked at each other, nodded, then simply said, "OK."

Fast Facts is hosted and supported by the Palliative Care Network of Wisconsin - PCNOW. Their mission is to "support the growth of palliative care services in Wisconsin through education, systems change, and advocacy."

They're on it for the long haul, with the recent release of Air travel at the end of life (#338). Remember what Walter Brooke said.

Wednesday, August 9, 2017

another video clip + survey

I appreciate your feedback on this 3:30 video clip, which describes seven mental processes of cognition. It's part of a program for clinicians, caregivers, and the public on the topic of caring for patients and families with advanced dementia at end of life.


 Thanks for your help. See you on Friday.


If you want to

Caring for patients and families with advanced dementia at end of life

The intended audience includes clinicians experienced with serious illness and care at end of life; clinicians with little or no such experience; experienced caregivers working at facilities, agencies, or privately; informal and family caregivers with little or no previous training; and the general community.

There will be 16 modules in the completed program, and each module will provide 0.5 nursing contact hours when approved - 8 hours total. The digital media portion of each modules runs between 7 and 17 minutes. The remaining time is spent in group discussion facilitated by a subject expert.

Support materials include assessment tools and bibliography, provided in digital format, can be printed.

Part 1: Concepts of care (completed)
 - The normal brain and cognition **clip is from here**
 - Assessment scales and advanced dementia
 - Connecting in advanced dementia
 - Goals of care: Safety and the 3-step dysphagia screen

Part 2: When pain becomes suffering (completed)
 - To approach suffering
 - Planning for goals: Comfortable and content
 - Ways that comfort
 - An opioid essential

 Part 3: Confronting delirium (script development)
 - Know the enemy
 - On the battlefield
 - And so it begins...
 - Using weapons wisely

 Part 4: Keeping up with Jeanne - a love story (story development)

Monday, August 7, 2017

Boo Boo talks about hospice

"It's really just common sense."

I thought I understood healthcare through my work as a nurse and my encounters with the system as an inpatient, outpatient, and caregiver spouse.

But it helps to look at things through completely different eyes, objectively, almost naively, without preconception or emotion. The simplest questions open the most interesting doors.

That's why I like talking to Boo Boo.

She's an 11 year-old deerhead teacup chihuahua who packs a lot of wisdom in a 3-pound frame. She has a knack for cutting through the clutter to get right to the heart of things.

It was Boo Boo who pointed out the fundamental flaw in For-Profit Hospices:

1. People are sick and dying
2. ????
3. Profit!!!

"Those question marks really bother me," Boo Boo explained. "Who knows what could happen?"

"Of course, they see opportunity," she continued. "Lots of money is changing hands. Boomers are getting old, sick, and dying. It's a demographic wave, and the surf is most definitely up! "

She began to fidget and bounce. "That's why Tom Price wants to allow balance billing under Medicare...," but I quickly changed the subject, because Boo Boo gets really worked up when she starts talking about republicans, especially Tom Price and Diane Black - and that was before she found out Diane Black was running for governor to "beat the liberals instead of caving in to them."


"How would you go about exploring hospice as a business in the U.S.?" I asked.

Boo Boo thought for a moment, then posed a question of her own. "Is there a list? There's gotta be some kind of list - who they are, how big, all of that - like the S&P 500, or Boston's 50 best restaurants. I think I'd start by looking for a list."

She gave that little smile she gives whenever she thinks she's been clever, then curled up and went to sleep. Boo Boo sleeps about 20 hours a day.

A simple Google search proved Boo Boo right. LexisNexis, the data analytics and research firm, compiled a list in 2015, "Top 100 Hospice Agencies."

In this case, top 100 = biggest 100, based on national market share. LexisNexis says the list is meant to help hospices, "better understand their market position, dynamics and environment for potential M&A activity and grow their businesses."

It sounds like what Earl Butz said about farming back in the '70's, "Get big, or get out."

Here's the "Top 10" version included with the press release:

You can give them your email and other information for the full version, or just grab it here (pdf).

I showed the "Top 100" to Boo Boo when she woke up. "Yeah, I figured there had to be a list like that somewhere. Let's take a look."

She yawned several times. "Some of these For Profit Hospices are publicly-traded, so we can wade through their filings with the SEC. But most of the For-Profit Hospices here are privately-held. Good luck finding out anything useful, unless you have enough money for them to take you seriously as a potential investor."

"How much money?" I wondered.

"If you have to ask, you don't have nearly enough." Boo Boo can be a little snotty sometimes.

She caught her tone, "Take a look here in Eastern Massachusetts. The folks at Steward aren't big enough to make the list yet, but don't think they're not going to try. Where did their money come from?"

"Cerebrus Capital Management. They're playing with $30 billion. They bought and sold Chrysler!" I had to admit that's out of my league.

"Exactly. But getting financial information on Not-for-Profit Hospices is easy. I'll show you how, but first I need to sit in the doorway for a while and bark at the squirrels."

And then off she went.

Thanks for reading. See you next time.

Friday, August 4, 2017

David Bowie is helping me grieve

The time between Jeanne’s initial diagnosis of mild cognitive impairment and her death from advanced Alzheimer’s was about five years. Six would be more factually accurate, and her overall disease trajectory may even have been closer to eight, taking into account her earliest concerns about memory and considering the data about prognosis in Alzheimer’s.

But five is a nice round number, and five years seems like a reasonable bag of time to rummage in.

It’s also the name of the first track on Ziggy Stardust.

The song’s extended final chorus works fine for me as an expression of what Jeanne and I thought we were facing. It’s more of an “our song” than any other we could claim, though I wasn’t very familiar with it until after both Jeanne and David Bowie had died.

Jeanne had been in bed for a week on January 10. She was comfortable, content, and more alert because she wasn’t using energy to transfer between the bed, her wheelchair, the shower, etc. We had settled into a good rhythm with our hospice team, and enjoyed the holidays.

Mostly, Jeanne slept. While she did, I read reactions to Bowie’s death, and what he meant to people. I listened to his music - not just my purchased copy of David Live, but to some of the hundreds, or more likely thousands, of concert recordings on YouTube.

Eighteen months later, I’m still listening.

Thanks for reading. See you Monday!

Here's a really good one:

Wednesday, August 2, 2017

video clip + survey!

My goal for this blog is simple - to help people know more and demand better for care in serious illness and at end of life.

I'm committed to 3 posts each week, M-W-F. Each day has a theme.

Wednesday's theme is "Some things I'm doing," and explores some things I'm doing.

Over the past ~10 months, I've been learning about, and trying to develop, a continuing education program blending digital media and live discussion, with accompanying learner tools and support materials for instructors.

I need your feedback on this 3:45 segment. If you stop reading here, watch the clip, and take the survey, we're looking at less than 5 minutes of your time.


Thank you.

If you want to

"Caring for patients and families with advanced dementia at end of life"

There will be 16 modules in the completed program, and each module will provide 0.5 nursing contact hours when approved - 8 hours total. The digital media portion of each modules runs between 7 and 17 minutes. The remaining time is spent in group discussion facilitated by a subject expert. Support materials include assessment tools and bibliography, provided in digital format, can be printed.

Part 1: Concepts of care
   - The normal brain and cognition (completed)
   - Assessment scales and advanced dementia
   - Connecting in advanced dementia
   - Goals of care: Safety and the 3-step dysphagia screen

Part 2: When pain becomes suffering (completed)
   - To approach suffering **clip is from here**
   - Planning for goals: Comfortable and content
   - Ways that comfort
   - An opioid essential

Part 3: Confronting delirium (script in development)
   - Know the enemy
   - On the battlefield
   - And so it begins...
   - Using weapons wisely

Part 4: Keeping up with Jeanne - a love story (story in development)

Thanks for reading. See you on Friday.