Consider a hypothetical 70-year-old woman; she could be your mother, your sister, your wife. Call her Margaret. She’s becoming ever-more forgetful; one day she gets lost on her way home from the grocery store. A neurologist diagnoses Alzheimer’s.
Over the next five years, Margaret’s thinking continues to decline. She speaks less, confuses words, falls often. She needs a wheelchair, becomes incontinent. No longer able to manage her care, you move her to a nursing home. A year later, the disease has spread to the part of Margaret’s brain that controls swallowing; she has difficulty eating. Because of this she “aspirates” her food — bits of it enter her lungs, and Margaret develops pneumonia. Within weeks, her lungs stop working, and Margaret dies.
Margaret’s story is a difficult one, but common. It also illustrates a conundrum: Did Margaret die of pneumonia, or Alzheimer’s?
On some level, the answer doesn’t matter much: death is death. But as a matter of public health, the answer is deeply important: funding for medical research, new treatments and ultimately, someday, a cure, tends to flow toward the most widespread and deadly diseases. That’s why a new study out this week is getting so much attention; should its findings become widely accepted, they could substantially increase the pace and effectiveness of Alzheimer’s research in the U.S.
The study, published Wednesday in the journal Neurology, confirmed what clinicians and researchers have long assumed: Alzheimer’s deaths have been greatly underreported.
The research found that 500,000 people die each year from Alzheimer’s — more than five times the number most recently reported by the CDC. That makes Alzheimer’s the third leading cause of death in the United States, after heart disease and cancer. Currently the CDC ranks Alzheimer’s sixth as a cause of mortality, with 84,000 deaths reported on death certificates.
The new report’s fuller accounting of Alzheimer’s deaths reinforces a basic but frequently overlooked fact: The illness is entirely fatal. A progressive brain disease that gradually impairs memory, reasoning and personality, Alzheimer’s eventually damages all brain functions, so that even walking, eating and breathing become impossible. Alzheimer’s kills because the brain is no longer able to keep the body alive. Continue reading →
WELLFLEET, Mass. – When 20-month-old Adelaida Kay Van Meter died of a rare genetic disease last winter, her father, Murro, gently carried her body out of the house to his wood shop in the pines near Gull Pond. He placed her in a small cedar box and surrounded her with ice packs. For three days, the little girl’s grieving parents were able to visit her and kiss her and hug her. Then, on the third day, after the medical examiner came to sign the last bit of paperwork, Van Meter and his wife, Sophia Fox, said good-bye to their baby, screwed the lid on the box and drove to a Plymouth, Mass. crematorium, where they watched the little coffin enter the furnace.
“We took care of Adelaida when she was an infant, we took care of her when she was healthy, we advocated for her in the hospital, we took care of her when she was sick,” her father said. “Why wouldn’t we take care of her when she was dead?” Sophia Fox added: “There was no way I was going to hand her over to some stranger at a funeral parlor where she’d be put in a refrigerator with a bunch of other dead bodies. This way was so much more natural. We saw the life leave her body and we were better able to let go.”
Death remains a topic that many of us would rather avoid. And when it comes to the actual nuts and bolts of caring for the dead, most of us tend to think it’s best — and furthermore, required by law — to let professional funeral arrangers handle the arrangements.
Well, it turns out that in most states it’s perfectly legal to care for your own dead. And, with new momentum to shatter longstanding taboos and stop tip-toeing around death — from “death with dignity” measures sweeping the country to projects promoting kitchen table “conversations” about our deepest end-of-life wishes — a re-energized DIY death movement is emerging.
This “personal funeral” or “home death care” movement involves reclaiming various aspects of death: for instance, keeping the dead body at home for some time rather than having it whisked it away; rejecting embalming and other environmentally questionable measures to prettify the dead; personally transporting a loved one’s corpse to a cemetery; and even, in some cases, home burials. Families are learning to navigate these delicate tasks with help from a growing cadre of “death midwives” “doulas” or “home death guides.”
(Courtesy Murro Van Meter)
The DIY death movement is loosely knit, and motivations vary, ranging from environmental concerns to religious or financial considerations. (Traditional funerals can cost around $10,000 or more; when you do-it-yourself, the cost can be reduced into the hundreds, experts says.) Each case is fiercely personal — there’s no playbook — but they all share a very intimate sense that death should unfold as a family matter, not as a moment to relinquish loved ones to a paid stranger or parlor.
This Is Legal?
The highly personal nature of home funerals appealed to Janet Baczuk, 58, of Sandwich, Mass. So, when her 93-year-old father, Stephen, died in September, 2011, she said, “I thought, I’d like to do that for my dad.” “It’s more humane, more natural…and more environmentally sound.”
Baczuk and her sister washed their father’s dead body using essential oils, and got a permit to drive the corpse to the cemetery in their (covered) pickup truck. A World War II veteran, Stephen Baczuk was buried at Massachusetts National Cemetery in Bourne, where officials allowed his simple pine and cherry casket to be placed directly on the ground, covered by an inverted concrete vault with no lid, “like a butter dish,” Baczuk said. When her mother died back in 2006, Baczuk said, she had no inkling that home funerals were an option — but wishes she did. “I didn’t know it could be done,” she said. “I think a lot of lay people don’t know this is legal or possible.”
“When it comes to death, it doesn’t matter where you are on the scale of education or socioeconomics, many people are shocked to find that it’s legal to care for your own dead at home,” says Josh Slocum, Executive Director of the Funeral Consumers Alliance, a Burlington, Vermont, nonprofit that works on all aspects of funeral education, from helping consumers reduce costs to advocating on DIY methods. “And I think this speaks to how distant death has become for us in just over a century. In the late 1800s, even turn of the century, caring for the dead was as prosaic and ordinary as taking care of the children or milking the farm animals.”
Slocum offers this analogy: If a woman wants to run a restaurant, she needs approval from the health department and officials, of course, would be permitted to inspect her kitchen. But the health department would have no jurisdiction over the same woman’s own kitchen at home. “They cannot come in and tell her that her refrigerator is subpar, and they have no authority to tell her she is not allowed to cook dinner for her kids. They can’t compel her to order dinner from a commercial, licensed restaurant,” Slocum says. “The same holds with state funeral regulatory boards. Their job is to ensure public welfare and protect paying consumers. Bizarrely, however, many think their jurisdiction extends to telling families they must pay an unwanted third party funeral home to do something the family could do for themselves.”
What characterizes the DIY death experience is that it’s so very personal. Consider these vastly different snapshots:
• In northern California, Kimberlyrenee Gamboa’s son Kyle committed suicide by jumping off the Golden Gate Bridge in September, three weeks into his senior year in high school. A seemingly happy 18-year-old with lots of friends and into competitive lasertag, Kyle’s death was such a shock, his mother said, she doesn’t know how she’d have managed it through a typical funeral. Instead, with help from her church and and home death guide, Heidi Boucher, Kyle’s body was returned to the family home one day after his death. Boucher washed Kyle and helped arrange the body on dry ice changed every 24 hours; she gathered information to fill out Kyle’s death certificate and managed all coordination with the mortuary. For three full days, Kyle’s body lay in the family living room in an open casket, not embalmed. During that time, day and night, surrounded by pictures and candles and flowers, all of his friends and family could say good-bye and remember his short life. For Kyle’s mother, that time was critical to her healing. Continue reading →
Having a conversation about the way you want to die can be uncomfortable. But that means many of us aren’t ready when our parents, spouse or children face a startling diagnosis or have a tragic accident. And how about for yourself? Do you have a health proxy, someone who knows what to tell doctors if you are unconscious?
A state law passed earlier this year urges more of us to make preparations for these wrenching experiences by requiring that doctors offer information on end-of-life care to “appropriate” patients. The new law does not require counseling or signatures on forms, but the hope is that when a doctor hands a patient a pamphlet, it may start a conversation.
“Sixty-seven percent of people want to die at home and only 24 percent did,” said Public Health Commissioner Cheryl Bartlett, citing a survey of Massachusetts residents. “If we have these conversations more, people will be more comfortable helping to make these choices come true.”
The Department of Public Health has just released draft rules for the law. It defines an “appropriate” patient as someone who has a terminal illness that is expected to cause death within six months and who would benefit from hospice and palliative care. But some doctors are already taking a much broader view.
“Our goal is that all patients have the opportunity to at least designate a surrogate,” said Eliza Shulman, chief of palliative care at Harvard Vanguard Medical Associates. “And that all of our most vulnerable patients have their wishes very clearly documented so that they are able to get care that’s aligned with their goals and practices.”
It’s one thing to know deep down you really should talk about death far before it happens; but it’s a very different thing to actually converse about the details of dying with the people you love.
That “disconnect” — between what you want and what you do — is the key finding from a new survey by the folks who launched The Conversation Project, a national effort to get people talking about the nitty gritty details about end-of-life care.
The survey found that 90 percent of Americans know they should have the “death conversation” but only 30 percent have done it. (One person who has done it is CommonHealth co-host Carey Goldberg; you can listen to her conversation with her 86-year-old father here.)
Here’s what Ellen Goodman, founder of The Conversation Project, said via email:
“I’m pretty amazed that 90 percent of Americans agree on anything! Ten years ago, we didn’t yet realize that having conversations about the care we want at the end of life was ‘important.’ Now we do. That’s tremendous progress.”
“At the same time, the survey shows that only 30 percent of Americans have actually had these conversations about end of life. So there’s a big gap between what we know and what we do. We are still reticent to start these conversations. We think that it’s too soon, and we wait for the other person to start talking. So our goal is to help people to close the gap. If you’re reluctant, you aren’t alone. If you know you should talk to the people you love before it’s too late, you are in the 90 percent! The Conversation Project has the stories and the tools that can really help.”
Why is it so hard to have these discussions? Here’s more insight from The Conversation Project (which was launched in collaboration with the Cambridge-based Institute for Healthcare Improvement) news release:
There are a host of reasons why Americans haven’t discussed their own wishes. Top reasons from the survey include:
–It’s not something they need to worry about at this point in life (29%), they aren’t sick yet (23%) Continue reading →
For many doctors, the most important person on their journey from pre-med to licensed healer is dead.
“When you start medical school, you begin to learn the details of cells and tissues and development and disease,” said Jared Wortzman, president of the Tufts University School of Medicine class of 2016. “But if you ask anyone here they’ll tell you, you don’t really become a medical student until the moment you meet your cadaver.”
Edmund Chilcoate in his Coast Guard days (Courtesy)
Wortzman spoke at an unusual gathering last week — a memorial service for the men and women who donated their bodies to the anatomy lab at Tufts and a reception for their families.
One of the donors was 83-year-old Edmund Chilcoate.
“This is when he was a baby. He was cute, wasn’t he cute?” said Kim Begin, one of Chilcoate’s two daughters. Begin flips the plastic-covered pages of a brown leather photo album while three of the first-year medical students who probed and dissected Chilcoate’s body lean in to look.
Speaking to your doctor about how you want to die may be as hard as (or even harder than) talking to your family.
So, the folks who created a kit to help you start talking about death with your loved ones, while sitting around the kitchen table, are introducing the next iteration of “The Conversation:” How To Talk To Your Doctor.
A companion to the original Conversation Starter Kit, (which my blog partner Carey Goldberg used to talk to her father about death and dying) the new kit offers a detailed framework with plenty of helpful tools for the tough discussion. There are worksheets, sample scripts, a glossary of key terms, specifics about what it’s okay to say and clear, factual information on how to talk to your doctor, nurse or another provider about your end-of-life wishes, fears and concerns. (Examples: What to say if your health care provider doesn’t want to talk about it; What to do if your two doctors have conflicting opinions or if you disagree with your siblings.)
The Conversation Project was launched by a group of media and medical professionals who want to help families and loved ones begin to talk about end-of-life care far in advance.
I asked one of the founders, Jessica McCannon, M.D., of the Pulmonary and Critical Care Unit at Massachusetts General Hospital, what the biggest obstacle usually is for patients who wish to initiate these types of conversations and what might they do to overcome these barriers. Here’s her emailed response:
It’s hard to pick just one [obstacle] – and surely it’s a combination of things. The biggest obstacles are assumptions; an assumption that the health care provider will bring it up at the appropriate time. Or fear—that if they, the patient, do raise the subject, that perhaps they will be abandoned, that their health care team won’t continue to provide the care they need, or that their team will give up. Cultural beliefs also play a role; there may be cultural resistance to discussing these topics for some patients, which can be further complicated by family members who are struggling to accept their loved one’s mortality. Time is another; time often comes up in discussions about barriers for health care providers and the health care system, but I think this is also a problem for patients. If you have a limited time with your health care provider, and you have a lot of urgent questions about a new medication, or want to discuss new symptoms, it can be hard to prioritize what can be an emotional discussion over more pressing issues (this means that we all have to get creative about thinking of new formats/ways in which to share information about what matters most to patients)… Continue reading →
The measure was defeated by a narrow margin here in Massachusetts. But as Carey noted in a recent post, much of the passion in favor of the measure came from people who had actually witnessed a loved one die under painful conditions with much suffering; these survivors yearned for a more graceful and dignified path to death for the ones they loved.
And indeed, the AP writes:
Gov. Deval Patrick says his decision to vote for a ballot question that would have legalized physician-assisted suicide for the terminally ill was motivated largely by personal considerations.
Patrick told reporters Wednesday that he supported the question after his experience with his mother at the end of her life.
Patrick also pointed to the death of his grandmother some years earlier.
Patrick said he knew how important it was for his mother and grandmother to have some measure of control at the end of their lives, although he’s not sure they would have used the medication the question would have legalized.
Listen to Fresh Air today for an insiders view of death and dying from a former critical care nurse who now counsels terminally ill people at the end of their lives. Some of those patients choose to die with an overdose of medications, which is legal in Oregon, Washington and Montana. Massachusetts voters will decide whether to legalize physician-assisted suicide in November.
Judith Schwartz, east coast regional coordinator for the nonprofit Compassion and Choices, tells Terry Gross that the top reason terminally ill patients say they want help dying is not because they’re in excruciating pain. She said people want to die when they can no longer do any of the large and small things they love. For some people that doesn’t matter, she said, but for the people it matters to, it matters a lot, and those patients stare straight into the “existential meaningless” of life. Continue reading →
The writer and journalist Dudley Clendinen died today in Baltimore after a year and a half long battle with amyotrophic lateral sclerosis, or ALS. Dudley worked as a reporter and editorial writer for The New York Times, and was the author of several books, including Out for Good: The Struggle to Build a Gay Rights Movement in America, on the evolution of the gay rights movement, and A Place Called Canterbury: Tales of the New Old Age in America. He remained in his home until he was moved to hospice care at the Joseph Richey House earlier today. He was 67 years old.
Maryland Morning will post audio of a remembrance of Dudley later today. Its series was extraordinary, as was Dudley’s courage and style as he did it. We posted praise and excerpts of it here, here and here. One of my favorite quotes: “Life gets so quirky and interesting when you’re dying.” Dudley was writing a book about the end of his life; I hope he got close enough to finishing it, and though I don’t know of any official post-mortem instructions, plan to buy many copies of it when it comes out, in lieu of flowers…
My father called yesterday to tell me he’s got spinal stenosis, yet another complication atop a long list of medical problems he faces at age 77. I don’t want to think about what’s next.
But maybe I should.
A new paper suggests that thinking about death and mortality may be a good thing: It can improve our physical health and offer perspective on life. Researchers report that even “non-conscious” thoughts of death, for instance, walking past a cemetery “could promote positive changes and promote helping others.”
From the news release:
Past research suggests that thinking about death is destructive and dangerous, fueling everything from prejudice and greed to violence. Such studies related to terror management theory (TMT), which posits that we uphold certain cultural beliefs to manage our feelings of mortality, have rarely explored the potential benefits of death awareness.
“This tendency for TMT research to primarily deal with negative attitudes and harmful behaviors has become so deeply entrenched in our field that some have recently suggested that death awareness is simply a bleak force of social destruction,” says Kenneth Vail of the University of Missouri, lead author of the new study in the online edition of Personality and Social Psychology Review this month. “There has been very little integrative understanding of how subtle, day-to-day, death awareness might be capable of motivating attitudes and behaviors that can minimize harm to oneself and others, and can promote well-being.” Continue reading →