one check, or many
always have a plan!
Here's a follow-up to Friday's post on something Bechor Zvi Aminoff said about suffering, namely that it's a function of care not disease.
Some people said they were offended, and that his statement wasn't helpful. I think it's the most honest and useful advice I've ever gotten, the ultimate reminder of my nursing role and responsibility.
Also important to note: Aminoff's comment is the result of his pioneering research on suffering, not a careless opinion.
A colleague recently posted a link and comment on her Facebook page objecting to an account in the New York Times, When the hospice care system fails, as, "unfortunately titled to get clicks."
She ultimately liked what the author had to say, but her reasoning struck me as a defensive rationalization, a statement of what can't be done, a way to wriggle off the hook: "Hospice... cannot do in one day what could have been done the years, months, weeks preceding a death."
Two of her co-workers agreed.
I find their comments, and the ones taking offense at Aminoff's observation, reactive, defensive, and not helpful for the patients and families who are suffering, and who are being failed.
Nobody wants to talk about failure. Or suffering. But the first step to addressing a problem is admitting it exists. Then, it's time for intelligent care - being vigilant and ready to act.
Enter the modified Mini Suffering State Exam, my adaptation of Aminoff's and Adunsky's tool. It's an excellent first step for patients, families, caregivers, and clinicians to work together and share an understanding of what may be ahead - and to make clear that suffering will be anticipated, prevented, and addressed.
I've changed the language for a few items, combined several others, and eliminated scoring. Patients and families facing serious illness and end of life are at risk for all of these aspects of suffering, and the point of mMsse is to direct our assessments to any aspects of suffering that are present and to prompt us to develop a plan.
Suffering isn't a function of disease. There's nothing about heart disease or cancer or Alzheimer's or a hangnail that guarantees suffering will or won't happen. Pain can be assessed and managed. Delirium can be anticipated and prevented. Emotional turmoil and spiritual crises aren't untouchable.
All of these are precisely the reasons for our skills as caring clinicians. When patients and families suffer, it's either because we didn't get to them, didn't know what to do, or didn't do it effectively enough.
Final news flash - hospices fail all of the time. Some learn and grow from their failures. Many would rather pretend they never happen, or quickly point a finger elsewhere.
I've often wanted to compile a list of hospices available to patients and families in Massachusetts, and this past weekend I did just that. I reviewed the member directory at the Hospice and Palliative Care Federation of Massachusetts, and searched Medicare's Hospice Compare website for agencies in the state. I suppose I could also sift through NHPCO's member directory, but maybe later.
Here's the result: there are sixty-four (64) different agencies from my combined search, listed alphabetically. Some organizations have multiple offices and locations, but I only listed them once. Several are familiar to me because I've worked there, or have colleagues who do. Some look like newcomers, and will require some digging. Several are associated with national chains. A few are the result of mergers and acquisitions.
This will be my sandbox, and over the coming weeks I'll be adding information, sorting, analyzing, and exploring it in greater detail. My first effort will be to compare executive compensation at non-profit hospices, since that information is readily available on IRS Form 990.
Hospices in Massachusetts
All Care Hospice Inc
Alliance Hospice Care LLC
Amedisys (9 MA locations branded as Beacon Hospice)
Baystate VNA and Hospice (duplicate?)
Broad Reach Hospice & Palliative Care
Brookhaven Hospice of MA, LLC
Caregroup Parmenter Home Care and Hospice, Inc.
Central MA Hospice
Chelsea Jewish Hospice
Circle Home Inc.
Clifton Hospice Services LLC
Community Nurse Home Care, Inc.
Community VNA Hospice Care
Compassionate Care Hospice
Compassus Hospice and Palliative Care
Constellation Health Services
Cooley Dickinson VNA & Hospice
Cranberry Hospice & Palliative Care
Dignity Hospice Care
Fidelis Hospice (Hospice Partners of the Northeast, LLC)
Good Shepherd Community Care
Great Lakes Caring (midwest chain w/ MA location in Newburyport)
GVNA HealthCare, Inc. Hospice
Hallmark Health VNA and Hospice
Health Alliance Home Health and Hospice
Hebrew Senior Life Hospice Care
Holyoke VNA and Hospice
Hospice of Franklin County, Inc.
Hospice of Martha’s Vineyard - socia model!
Hospice of the Fisher Home
Hospice of the South Shore - mess?
Hospice Services of MA
Hospice Services of Western and Central Mass
Hospicecare in the Berkshires
Maestro Hospice Care LLC
Merrimack Valley Hospice
MetroWest HomeCare & Hospice (Amedisys)
Middlesex East Visiting Nurse Hospice
Nashoba Nursing Services and Hospice
New England Hospice (II?)
Notre Dame Hospice
NVNA and Hospice
Old Colony Hospice & Palliative Care
Overlook Visiting Nurse Association Hospice
Palliative & Supportive Care of Nantucket
Salmon VNA & Hospice
Seasons Hospice & Palliative Care of MA
Southcoast Visiting Nurse Association
Spectrum Home Health and Hospice Care
Steward Home Care-Hospice,
Sudbury Pines Hospice
Trinity Health of NE at Home
Visiting Nurse and Community Health-Hospice Program
VNA Care Network & Hospice
VNA Hospice & Palliative Care of Cape Cod
West River Hospice
"Life is hard. Then you die. Then they throw dirt in your face. Then the worms eat you. Be grateful it happens in that order." David Gerrold
“There is a difficult discussion that rarely happens among American funeral directors: viewing the embalmed body is often an unpleasant experience for the family.”
Caitlin Doughty, "From Here to Eternity," p.179.
The title for this post is the punchline of an old joke:
The owner of a flower shop answers the phone to hear an irate customer complain that the arrangement she ordered for the grand opening of her store reads, "Dearest Darling - Gone, But Not Forgotten."
He apologizes for the obvious mistake, then hangs up, visibly shaken.
"What's the matter? his assistant asks.
"Buzzy mixed up the orders, and delivered funeral flowers to the store opening. That means he's on his way to the funeral home with a horseshoe wreath and the banner, Best of Luck in Your New Location!"
I gave a talk this week about the 5-year toboggan ride that Jeanne and I took, from her initial diagnosis of Mild Cognitive Impairment in 2010, through her decline from Alzheimer's to her death in January, 2016. It's a love story I will return to.
As luck always has it, the latest New Yorker features an article about dementia by Larissa MacFarquhar. In it, MacFarquhar explores a basic question - what does it mean to lie to someone with dementia?
I need to think about that one. In the meantime, you can watch a 5-minute video interview with the author here (pictured above, starts with a commercial), and find the article at the New Yorker website here.