Thursday, January 17, 2019

Sunday brunch, a movie, two contact hours - FREE!

Professionals in Oncology, Palliative, and End of Life Care
Join us a Free Film Screening and Approved Continuing Education Program

Sunday, February 10, 2019
9:30 - 11:30 am

The Virginia Thurston Healing Garden
Cancer Support Center
145 Bolton Road, Harvard, MA 01451

See the award-winning documentary End Game, and a discussion led by Brianne Carter, MTS,LICSW,OSW-C, and Jerry Soucy, RN,CHPN.

Space is limited. Registration required.

Call 978-456-3532

Download your FREE color brochure NOW! (PDF)

Links to the film and reviews

IndieWire “Oscar 2019 Best Documentary shortlist.” 

Review, Rotten Tomatoes - “End Game manages to transcend its genre peers and deliver something truly special and unique.” 

Review, Stream it or Skip it? - “Stream it. It’s heavy stuff, sure, but it’s beautifully made – and we could all use a little reminding of how precious life is...”

Review, Life Matters Media - “Executive producer Shoshana Ungerleider, a hospice and palliative care physician...said she hopes audiences are empowered with information about hospice and palliative medicine so they can make better, more informed decisions when facing death.”

Review, Tricycle Magazine - “...the documentary invites us to participate in the penetrating intimacy of dying as seen from the perspectives of patients, their loved ones, and healthcare practitioners. We meet Kym, Bruce, Pat, Mitra, and Thekla at the ends of their lives... We don’t want these people to die, but they will.” 

This Program is Presented in Partnership

The Virginia Thurston Healing Garden Cancer Support Center is the premiere provider of integrative oncology care in Massachusetts, located on 8 acres of serene woodlands in Harvard, MA. Our support groups, expressive and integrative therapies, and individual counseling services aim to optimize the quality of life for all those who are affected by cancer – men, women, and their caregivers – regardless of cancer type, prognosis, or financial ability to pay for services.

Good Shepherd Community Care provides care, treatment, support, and education to patients, families, clinicians, and the community facing serious illness, end of life, grief, and loss through its culturally-informed hospice, palliative care, bereavement, and educational programs.

Jerry Soucy, RN, CHPN is a nurse activist with a practice serving patients, families, caregivers, clinicians, and the community. He is experienced in multiple clinical settings, including specialty intensive care at a major medical center, outpatient hemodialysis, and community hospice. Jerry is certified in hospice and palliative nursing and blogs about serious illness and end of life. 

Tuesday, January 8, 2019

searching for hospice at a place in massachusetts, part 2

I'm passing on these because...

This earlier post described Tom and Shelly, who have asked for our advice about hospice.

They've endured nine years of aggressive treatment. Now Tom's cancer has spread from his lungs to the bones in his legs and ribs. The pain is difficult to manage. They have two small children, but also several close friends who have promised to help, because Tom wants to die at home.

"It's not right," Shelly says. "Our life together was just getting started."

I looked through a list of agencies serving their hometown, and suggested they talk to someone at Old Colony Hospice and Palliative Care

That was the most important challenge - to cut through the static and determine where to focus - "Plan A."

Let's look at the agencies I quickly eliminated - "Plan Z."

15. Child Health Systems, Inc. Looks like a contractor for pediatric and specialty care durable medical equipment (DME), and supplies. They're not relevant to our search for hospice.

None of these organizations appear in either Medicare's Hospice Compare, or the member directory at the Hospice and Palliative Care Federation of Massachusetts, and so weren't considered:

14. Vista Care
13. Hospice Care of Greater Taunton
12. Solamor 
11. Guardian 
10. Bayada 

9. Compassionate Care Hospice (CCH) is listed in Medicare's Hospice Comparebut isn't a member of the MA Federation.

My initial search revealed a privately-held for-profit chain with offices in 22 states. Their website is loaded with stock photos and generic information, supplemented by ways to contact various locations - three in Massachusetts, including one within our search area in Taunton.

As a privately-held for-profit company, CCH isn't required to publicly report their financial or operating information, so no transparency - a deal-breaker in my book. 

CCH promotes the Compassionate Care Hospice Foundation - a tax-exempt charity which is required to publicly file IRS Form 990 - an interesting subject for another post.

Another search yielded surprising news:

Amedisys (AMED) Announces Agreement to Acquire Compassionate Care Hospice for $340M

"Under the terms of the agreement, expected to close by February 1, 2019, Amedisys will acquire 100 percent of the ownership interests in Compassionate Care Hospice for a fixed price of $340 million, which is inclusive of $50 million in payments related to a tax asset and working capital. Amedisys, currently caring for more than 7,500 hospice patients per day in 22 states, will become the third largest hospice provider in America."

Also, too:

"The transaction adds significant new access to Amedisys’ network of 83 ...centers. Post-closing, the combined hospice operations will include 136 ...centers in 34 states, with an ADC of approximately 11,000 patients and approximately 5,700 hospice employees."

It will be interesting to follow this transaction. Amedisys has a presence in Massachusetts because it acquired Beacon Hospice for $125 million in 2011.

To learn more about the kind of corporate psychopathy at work in Hospice M&A, read the essential Strange Tony at Generic Hospice.

We'll continue working our way up the list in our next post, when we look at two more privately-held for-profit agencies I wouldn't touch with a ten-foot pole, and one I'm kind of curious about.

Thursday, January 3, 2019

Understanding Alzheimer's - decline and prognosis

From a series illustrating
Functional Assessment Staging (FAST)

Here’s basic information on FAST - Sclan, S. Reisberg, B. Functional assessment staging (FAST) in Alzheimer's disease: reliability, validity, and ordinality. Int Psychogeriatr. 1992;4 Suppl 1:55-69.

“...Empirical and systematic examination of the functional changes occurring in patients with Alzheimer’s Disease (AD) has resulted in the development of an assessment measure termed Functional Assessment Staging (FAST) that allows for the specific evaluation of these changes throughout the entire course of AD. In this paper the results of three separate investigations regarding the reliability, validity, and progressive ordinality of FAST are described.”

- - -

When it comes to exploring goals for care with patients and families, I find too many clinicians and agencies hide behind “guidelines” and “criteria.”Those who do are either uninformed, lazy, simply don’t care, or worse. It's particularly troubling in the case of advanced dementia.

Also, too: see here and here and here and here.

These authors pretty much said the same thing sixteen (16!) years ago. 

Schonwetter, R. Han, B. Small, B. Martin, B. Tope, K. Haley, W. Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. American Journal of Hospice and Palliative Care. 2003;20(2),105-113.

“To the best of our knowledge this study was the first to not only evaluate the validity of the Medicare guidelines in determining the appropriateness of dementia patients for hospice, but also to identify valid predictors of six month survival for patients with advanced dementia that would better predict which patients would have a prognosis of less than six months. The results suggest that the hospice Medicare guidelines were not valid in predicting survival of these patients.”


“Since implementation of the hospice Medicare dementia guidelines, patients may have been denied access to hospice services based on guidelines… that were invalid.”


“The results of this study confirm the importance of performance and nutrition measures when estimating prognosis in advanced dementia patients. ...research with the FAST scale has generally included patients without serious comorbid conditions… a small subset of patients atypical of patients seen in the hospice setting.”

- - -

There’s lots of work to be done. Patients and families need to know more and demand better. Clinicians need to be trustworthy and proficient (expert). Communities need to step up and take charge. Agencies need to be transparent, and not abuse their staff. 

Sachs,G. Shega, J. Cox-Hayley, D. Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine 2004;19(10),1057–1063.

“...In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy.”

Wednesday, January 2, 2019

On a Wednesday that feels like a Monday

Last in a series illustrating the
Palliative Performance Scale (PPS)

Adapted from Ho,F.Lau,F.Downing,M.Lesperance,M. A reliability and validity study of the Palliative Performance Scale. BMC Palliative Care 2008,7:10. PDF available here.

Monday, December 31, 2018

What's new is old

A little something to guide our practice in 2019 - the distilled wisdom of five giants:

Anne Hargreaves
Anne Kibrick
Jeanne Soucy
Florence Nightingale
Diane Meier

Happy New Year!

Friday, December 28, 2018

searching for hospice at a place in massachusetts

Something's telling me I must go home...


I've worked at two of the agencies discussed in this post - Good Shepherd and Seasons. See my profile on LinkedIn. I also discussed three different employment opportunities at Steward's hospice agency. The process and outcome described here are solely my own.


How would any of us answer a friend, or friend of a friend, if they asked for help choosing a hospice agency? How would we respond if we worked for one?

Decline to get involved? Suggest our own? Point to Google? Start a conversation?


At the age of thirty-five, Tom was a successful lawyer, devoted husband, proud father, and newly-diagnosed lung cancer patient. 

He chose aggressive medical treatment from the start. “Always let me know my options, doc. I’ll try anything that means a chance for more time.” 

Tom has been treated at a large medical center in Brockton, a city of about 100,000 located 25 miles south of Boston. Home is a small town nearby.

Nine years later, Tom and his wife Shelly look back on their “long toboggan ride.” They've endured two surgeries, two rounds of radiation, and just a few months ago, an experimental drug - “My Hail-Mary Pass. Go Eagles.” 

Tom's been in the hospital for six days, after suffering at home with back pain so severe he could not even move. 

His pain is finally under control, thanks to an infusion pump delivering a continuous dose of subcutaneous hydromorphone, ordered by a senior medical resident who consulted with a pharmacist after a nurse brought them together in the middle of the night when Shelly turned to her because it seemed no one else was listening.  

Tom and Shelly say they’re ready to go home with a hospice plan of care. Their medical team agrees. It took many difficult conversations to reach this point. Now it’s time to act. 

Your cell phone rings. Shelly asks for help. She says they're grateful for their surgeon and oncologist. “But they can’t fix things anymore. We’re coming to the end.”

Where to begin?

Google sees quite a few,
but here's where I'd start.


I used Google Maps to search for 'hospice' where Tom and Shelly live, then edited and organized the results.

Since I don't live or work in this part of the Commonwealth ("God save it!"), I'm only familiar with a few of the agencies on the list. But I know where to look, what to look for, who to ask, and what to ask about.

I sorted the list based on which agency I think is most worth Shelly's time and effort, and can best serve what matters to her and Tom.

Old Colony Hospice and Palliative Care is #1 on my list for several reasons. Here's my thinking:

It's a tax-exempt not-for-profit hospice established in 1979, based on the original model that predates Medicare reimbursement. It's now as much a part of the community as the post office.

Those are my first criteria - be of the community, and practice simple financial transparency. See Boo Boo's take on that here.

Tax-exempt organizations have to submit IRS Form 990 every year, and disclose information about finances, corporate governance, most highly-compensated employees, fund-raising, and other aspects of its operations.

See Boo Boo's take on that here.

An organization's 990 must be open and available to the public. I haven't found a hospice that lists its filings on its own website. That should be the standard, like Partners in Health and Doctors Without Borders.

Until then, set up a free account with a service like GuideStar or Charity Navigator.

I use a hospice's 990 for the broadest strokes: its annual income, expenses, net +/-, and fund balance roughly indicate relative size, how well operations are managed, and how well it's positioned for the longer-term. I think there's a sweet spot between too-small-to-survive and too-big-to-be-any-good; and between can't-make-a-buck and raking-it-in.

I also look at compensation for the CEO and any other listed employees, to see who they are, what they're getting, and how that all compares to others. I think this information gives insight into an organization's values.

Old Colony's IRS 990 for 2015

Total Revenue $8.6M
Total Expenses $7.2M
Net $1.4M
Fund Balance/Net Assests $2.7M
Total CEO compensation $217k
Director of Finance Compensation $86.6k

I'm curious why nobody else there makes over $100,000. I'd also like to see forms for 2016 and 2017, which I haven't found on GuideStar. Otherwise, this snapshot looks OK to me.

I have limited but positive indirect experience with Old Colony through several trusted nursing colleagues, including one who was their clinical liaison in Boston's Longwood Medical Area. Her position was shared by a second hospice, Good Shepherd, and she directed the admission to either agency depending on the patient and family's city or town.

Other colleagues also gave them positive references, and there are no screaming red flag reviews at either Glassdoor or Indeed.


Shelly and Tom urgently needed help to meet their goal to get home soon, where he can be comfortable for as much time as possible with his family and friends. 

They need expert support for what lies ahead, and I suggested Shelly consider Old Colony as their best available option - her Plan "A."

I also suggested a few questions to ask:
  1. How many patients and families are you currently caring for?
  2. Will I see the same hospice nurse every time?
  3. If not, why not?
  4. If so, how many other patients and families will also be assigned to my hospice nurse?
See also:

I'll describe my thinking on the other agencies in a future post.

Thanks for reading.