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.
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.
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.
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
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:
How many patients and families are you currently caring for?
Will I see the same hospice nurse every time?
If not, why not?
If so, how many other patients and families will also be assigned to my hospice nurse?
Joys of the season to you! The days are getting longer and the sun is getting brighter. I just made my first pass through the new catalog from Johnny's Selected Seeds.We have much to be thankful for, and even more to do in the coming year. Here's to it!
I've been busy offline and haven't been posting much - the most sorry-ass excuse for a blogger. Still, that's what's going on at the moment, though I'm trying to get back in the saddle.
In any event. some of my recent work will end up here sooner or later. Death Nurse Manifesto is one of those things. It's an ongoing compilation of some ideas, insights, biases, and bad jokes - rendered in a form somewhere between that of a twisted fortune cookie fortune, drunken tweet, and non-conforming haiku.
Do you have any absolute true-isms, hopeful and wise advice, or cynical observations of your own to pass along? Please, share!
That's a screenshot of something by Peter Baker in the Times, 'I Love You, Too': George Bush's Final Days. It's probably the worst passage in a whole pile of sappy and unhelpful reporting - and I don't only mean Baker's piece.
As for the former president, I'm glad to hear he and his family experienced a peaceful death. He seems to have reached a peaceful acceptance of death, and I think that's the single most important factor to achieving one. It also doesn't hurt to have plenty of money.
We need to understand how death impacts the land, and change how we bury our dead.
The modern commercial/industrial burial is the worst way to dispose of a loved one. It requires toxic chemicals for embalming; non-biodegradable materials for vaults and coffins; and irrigation, fertilizer, pesticides, and power equipment to maintain manicured landscapes.
It wastes resources. It’s environmentally selfish and unsustainable.
Modern commercial/industrial burial is a symptom of our unhealthy collective detachment from dying, death, and grief. We’ve allowed an essential human experience to be replaced with products and services. Natural burial is one way we can begin to reclaim it.
“If you’re looking to avoid the whole ‘doomed to die and decay’ thing, you will have all the help in the world from the funeral industry. Its economic model is based on the principle of protection, sanitation, and beautification of the corpse… no matter what it takes, how much it costs, or how bad it is for the environment. We need new options.”
“The paraphernalia of the American way of death keeps people at one remove from their own feelings. ...funerals are custom-made only in the same sense automobiles are, and the price we pay for paying our last respects in the American way of death is the price of our personality, which we have purposely withheld from the funeral. By our passive role in directing our funerals, we have transformed an important rite of personal passage into an impersonal rite of impassivity.”
The body is chemically embalmed using formalin and other agents, then dressed, groomed, and placed in a casket, usually manufactured from steel or finished hardwood. At the time of burial, the casket is placed within a burial vault manufactured from reinforced concrete. The vault is closed and covered with 1-2 feet of soil, which is subsequently seeded and landscaped consistent with the rest of the cemetery.
Modern grave recently-opened and ready for a burial at upper left
Concrete lid for vault protected with plywood in foreground
Concrete vault ready to receive casket (note rainwater)
What are the elements of a typical flame-cremation?
The (most often) unembalmed body is held in a container, often cardboard, which is then placed in a retort (oven) usually fired by natural gas. The retort is heated to 1800-2000°F for up to 2 hours, as required for the body to be combusted. Ash and bone fragments that remain are collected and ground to a uniformly coarse powder (cremated remains, aka ‘cremains’).
What are the elements of a typical green (natural) burial?
The unembalmed body is held in a biodegradable burial container, often made from wood, bamboo, or fabric (cotton, linen, silk). The unembalmed body can be safely cleaned, dressed, and held for viewing if it is kept cool, which can be achieved in several ways. At time of burial, the container is placed in direct contact with the soil, and buried at a depth of about 4 feet to support aerobic bacteria for decomposition. The length of time required for a body to naturally decay to a skeleton generally occurs within several months to 2 years, depending on the climate.
Natural grave recently-opened and ready for a winter burial
Body wrapped in linen shroud by Kinkaraco on pine boughs with lilies
Same grave in high summer
What are the elements of a more green (natural) cremation?
Alkaline hydrolysis (aka ‘aquamation,’ ’water cremation,’ ‘green cremation’) uses a solution of water and sodium or potassium hydroxide, pressurized and heated to 350°F for about two hours, in a process that accelerates the body’s decomposition to water and base chemicals. Small calcium fragments remain, and are ground to coarse powder.
What are the environmental effects of a modern burial?
Caitlin knows every detail
Embalming exposes funeral workers to toxic substances and generates hazardous waste; embalming chemicals leach into the cemetery soil and water table; caskets and vaults are manufactured from non-biodegradable materials, transported, and buried; landscapes are maintained with irrigation, fertilizer, pesticides, and power equipment.
“For all its verdant landscaping, the typical cemetery functions less like a bucolic resting ground for the dead than a landfill for the materials that infuse and encase them. Over time, the typical ten-acre swatch of cemetery ground, for example, contains enough coffin wood to construct more than 40 houses, nearly 1,000 tons of casket steel and another twenty thousand tons of vault concrete. Add to that a volume of toxic formalin nearly sufficient to fill a small backyard swimming pool and untold gallons of pesticide and weed killer used to keep the cemetery grounds preternaturally green.”
“The modern practice of embalming replaces organic blood with various toxic and carcinogenic chemicals, particularly formaldehyde. Then the embalmed body is placed underground where, despite the casket, the body's fluids will inevitably leak into the groundwater. Alternatively, the body may be burned, releasing chemicals into the air. The initial reasons for the use of embalming and the rationale given for the continuance of the practice fail to justify the potential public health and environmental risks presented by embalming.”
What are the environmental effects of a flame cremation?
“Cremation releases about 880 pounds of carbon dioxide into the atmosphere, as well as pollutants like dioxins and mercury vapor. The energy required to fuel a cremation retort is equivalent to a 500-mile car trip.”
“The cremation of cadavers is another way metallic mercury vapour is emitted into the atmosphere even though crematoria operating temperatures are usually above 80°C, sufficient to vaporize the mercury from amalgam fillings. In addition, crematoria are usually located in densely populated areas, some having inadequate chimneys. The presence of the resultant mercury vapour so close to the ground facilitates more rapid conversion to soluble forms which are then deposited into the soil and water and eventually enter the food chain.”
What are the environmental effects of a green (natural) burial?
A natural burial that’s properly located and conducted presents no health hazards and is beneficial to the environment.
What are the environmental effects of liquid cremation?
About 15–60 gallons of water are required for a body weighing up to 250 pounds. Liquid cremation generates a harmless colored liquid containing amino acids, peptides, sugars and salts; and soft, porous white calcium phosphate fragments. The fragments are ground and returned to the next of kin. The liquid is either disposed through the sewer system or used in a garden or green space.
Liquid cremation uses about one-quarter of the energy needed for flame cremation, produces less carbon dioxide, and no mercury emissions. Alkaline hydrolysis has been adopted as an alternative to pet flame cremation. Because it inactivates viruses, bacteria, and prions, it’s used to sterilize animal carcasses that may pose a health hazard.
Liquid cremation is currently legal only in Oregon, Minnesota, Maryland, Maine, Kansas, Illinois, Florida, Colorado, Georgia, Wyoming, Idaho, Nevada, California, and Utah. Additional rules are pending in New Jersey, New York, North Carolina, Ohio, and Pennsylvania. The process was legal in New Hampshire for several years but amid opposition by religious lobby groups it was banned in 2008 and a proposal to legalize it was rejected in 2013. It has been used for cadavers donated for research at medical schools and universities.
What does a green burial ground look like?
“Ramsey Creek is a cemetery, but its grounds are so natural, so free of the usual funereal structures that you could wander into it by chance on an afternoon hike through these hills and never even know you've strayed into a graveyard. “Visitors are surprised when they first see Ramsey Creek because they expect it to look like a regular cemetery with a little bit of nature around it,” says Billy Campbell, a 50-something Westminster family physician who founded Ramsey Creek and serves as president of Memorial Ecosystems, the cemetery’s parent company. “We’re a woodland burial ground, an actual forest where burials also take place.”
“Nearly 54 percent of Americans are considering a green burial, and 72 percent of cemeteries are reporting an increased demand, according to a survey released earlier this year by the National Funeral Directors Association.”
“Since it opened about 10 years ago, Cedar Brook has sold 207 plots and had 55 burials, said Joyce Foley, the owner. The rural, wooded burial ground is part of 150 acres owned by Foley’s longtime life partner, Peter McHugh. A family burial plot on the land that dates to the 1700’s sparked McHugh’s interested in being buried on his own land, in a green way. McHugh died in 2013.”
The Kennebec Land Trust (ME) “...has been working behind the scenes for at least two years to find a parcel where the soils and site are right for green burials. Officials said the site would also be developed with trails accessible to people with disabilities, for hikers, birdwatchers and other nature-lovers.”
“The Green Cemetery Initiative is a partnership between Mount Grace and Green Burial Massachusetts to establish the first green cemetery in Massachusetts open to all.... A green cemetery sets aside open space for natural habitat and encourages the public to visit a beautiful destination for generations to come. Combining natural burials with land conservation demonstrates another way that protected land can benefit people.”
‘Steelmantown’ (2013) Transformer Films. Confronting death and celebrating life at a green cemetery in southern New Jersey. This film weaves 3 stories about the owner/developer of a green cemetery, husband-wife funeral directors, and a naturalist facing end of life that come together in a moving account of a “new” way to care for the dead that’s really as old as history.
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) Ascend Hospice Aseracare Hospice Baystate Hospice Baystate VNA and Hospice (duplicate?) Broad Reach Hospice & Palliative Care Brookhaven Hospice of MA, LLC Care Dimensions 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 Hope Health 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 JHC Hospice Kindred Hospice 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 Trinity Hospice Visiting Nurse and Community Health-Hospice Program VNA Care Network & Hospice VNA Hospice & Palliative Care of Cape Cod West River Hospice
“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.