Don’t Lie About Dying Patients’ Pain

— Because sometimes, yes, they suffered

by Judy Melinek MD

The trucker was making a delivery to a factory. While working out of the back of his rig, he ended up on the wrong side of a machine loader. The loader’s arm hit him, lifted him up, pushed him against a metal barrier, and crushed his chest. When the ambulance arrived at the emergency room, the trucker was in pain, slipping in and out of consciousness. The CT scan showed cardiac tamponade — bleeding in the sac around the heart — and he was rushed to surgery. The surgeon made a note that his patient was grimacing in agony in the elevator on the way to the operating room. The loader arm’s blow had essentially sheared the inferior vena cava — the biggest vein in the body — off his heart. The surgeons were successful in sewing it back together, but the trucker had lost so much blood that his major organs were beginning to shut down. He hung on for a week, in a drug-induced coma, on a ventilator in the intensive care unit. When his family came to visit, hospital staff would adjust the trucker’s medications down to allow him to tap out some tunes on a board, or squeeze their hands in response to questions. They were grateful that he was responsive, that he recognized them. They held out hope for his recovery. But the trucker had multiple broken ribs and a crushed sternum, and his organs were dying inside him. Nobody wanted to tell his wife and sons how much pain he was in. Nobody wanted to tell them he was dying.

I didn’t do the autopsy. I was brought in much later, to review the case and answer one simple question: Did this man suffer? In lawsuits that arise from industrial accidents, large financial penalties apply to those found responsible for preventable deaths that involve conscious pain and suffering. A forensic pathology expert witness can make postmortem diagnosis of terrible events — such as, in the trucker’s case, bone-crushing injury, battered internal organs, and ruptured vital structures — by reviewing the medical records and the autopsy findings. We can also examine the brain for signs of damage that would indicate that the decedent must have been rendered unconscious — and therefore, perhaps, did not suffer the effects of those agonizing injuries as a fully-conscious person would.

When I was a young doctor right out of autopsy training and would call the next of kin of the recently deceased, the question I feared facing the most was, “Did he suffer?” Everyone wants assurance that their loved one’s death was quick and painless. How should I answer that question when that death was, like the trucker’s, slow and awful?

I used to lie about it. There were times that I would tell the next of kin that their loved one’s death was instantaneous and pain-free, even when I knew from the autopsy that the death had been a bad one. I thought I was doing the right thing, the merciful thing — sparing those poor people the psychic agony of knowing that their loved one suffered in death.

But then I was called for the first time to testify in court on the conscious pain and suffering of one of my cases. I was placed under oath and sworn to tell the truth. I looked out from behind the stand at the decedent’s family sitting in the gallery, and panicked. Had I lied to those people, assured them that the body I had autopsied showed all the signs of having died, peacefully, in the blink of an eye? And if I had done that, how would they react now, when I would testify to the truth, and they would hear, for the first time, about the agony their loved one suffered?

We doctors start our careers with an oath to “first, do not harm.” Then, in court, we take an oath “to tell the truth, the whole truth, and nothing but the truth.” What if these oaths conflict? What if doctors, in an attempt to comfort a grieving family, actually give them false information that can later cost them the financial benefits that they deserve from a legal decision over their loved ones’ conscious pain and suffering?

Tell the truth. It’s a hard choice, but the only one that a doctor — any doctor — can make. If you are a clinician treating patients, their loved ones deserve to know the true nature of their pain, and also everything you are doing to make it better. Talk to the families about patient pain. Document your findings about patient pain. You aren’t helping anyone by hiding it. You might even be doing harm.

Complete Article HERE!

The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

Complete Article HERE!

Doctors and the D Word:

Talking About Death Is an Essential Skill — and One Often Lacking

By

The vast majority of physicians enter medicine because they want to help people, so it’s not necessarily surprising that many are uncomfortable discussing death with their patients. However, when that discomfort reaches so far as to prevent conversations that patients need and want to have, it’s a problem, experts say. 

A physician’s discomfort with talking about death can go as far as avoiding the word itself, says Helen Stanton Chapple, PhD, RN, an associate professor at the Creighton University Center for Health Policy and Ethics and College of Nursing in Omaha, Nebraska. Although she’s been out of clinical practice for about a decade, Dr Chapple recalls the euphemisms many providers used to avoid the subject.

Dr Chapple explained that the closest she’s heard physicians come to acknowledging that a patient is dying is saying that, “the illness is not survivable,” she told Medical Bag. “Part of it is that they don’t get any training, part of it is that they don’t see it modeled when coming up in residency training, and part of it is that they dislike trying to tell the future. That’s a problem.”

Fortunately, things are beginning to change in terms of the training and education physicians receive. The Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 1676), introduced to Congress by Representative Eliot Engel in 2017, for example, proposes amending the Public Health Service Act to beef up support for palliative care, including training for healthcare professionals.

“It’s still widely variable at different medical schools and institutions, but I think it’s becoming much more accepted that this is part of the basic skills a physician needs,” said J. Randall Curtis, MD, MPH, a professor of medicine and director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine in Seattle.

“More and more medical students and physician are being trained in giving bad news and how to have these conversations,” Dr Curtis told Medical Bag. “But it doesn’t make these conversations easy. You’re working with a patient, and you have to give them bad news. It’s hard even if you’re trained and good at it.”

And change is slow, says Lori Bishop, RN, MHA, vice president of palliative and advanced care at the National Hospice & Palliative Care Organization in Alexandria, Virginia.

“I think there’s a concern or perception that some of these conversations could reduce hope or take away hope,” Ms Bishop told Medical Bag. Research suggests the opposite, she adds. “People with serious illness are really expecting to have these conversations and want to have them, but they’re waiting for the doctor to initiate that conversation, so sometimes it doesn’t happen.”

Interestingly, clinicians perceive difficulties with patient and family responses as bigger barriers to these discussions than their own skills and limitations, but patient research does not quite jibe with those findings.1

A small, qualitative study published in 2015 found that “many participants were very comfortable talking about their own death.”2 The authors concluded, “Being able to talk about end-of-life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.”

It’s not just patients waiting for the physician to take the first step. Providers across the medical profession tend to believe that physicians should lead the discussion, both because of their medical training and because of their ability to answer clarifying questions about the patient’s prognosis, suggests a 2016 qualitative study in the American Journal of Hospice and Palliative Care.3

Broaching the topic as early as reasonably possible also gives patients more time, information, and opportunity to make the decisions they want based on their values and their place in life, Ms Bishop added.

“I may choose a different path once I start a conversation if I know what my risks are and where I’m at in the trajectory in a disease,” Ms Bishop said. “You miss an opportunity for some pretty rich discussions when you don’t have these conversations. It’s not just a medical conversation. It’s really in context of that whole individual and where they’re at in their life and what matters to them.”

Why Doctors Delay

The reasons for physicians’ discomfort with conversations about dying are as much cultural, social, and systemic as they are personal, Dr Chapple told Medical Bag. The health care system is set up in such a way that necessary changes in a care plan do not always keep pace with changes in a patient’s condition, particularly if those changes occur overnight or on weekends when the primary medical team is off. It’s attending physicians who make the decisions, not the nurses or residents who may see the patient — and their deterioration — more frequently.

“Part of it is nurses having to witness and inflict the suffering and getting sick of it when they think there’s no good outcome,” Dr Chapple said. “They become like a Greek chorus, commenting to each other and to individual residents, but the attending physicians make the decisions and have their own reasons.”

A Dutch research project4 found the biggest reasons for delaying conversations about a patient’s death were “timing (when is the right moment?), reserve (because of the potential emotional despair of the patient), and hope (who am I to rob a patient of their hope?).”4

Nurses may develop a better sense than doctors for some of these answers because they are the ones implementing interventions, Dr Chapple added.

“They’re hanging the IVs, putting the machines on, monitoring the patient and doing all this stuff, so I think they have a sense of when there’s no resilience left,” Chapple told Medical Bag. “So the nurses are looking at the big picture, and the physicians are trying to tweak each complication.”

That tweaking mindset often begins from the first conversation, when a physician tells the patient about a terminal diagnosis but hardly before launching into the treatments they can offer.

“There’s a way of telling that doesn’t let you deal with the existential reality of it and instead moves you immediately into the steps you’re going to take,” Dr Chapple said. She noted that some research has shown that patients are surprised when they learn their treatments were never intended to be curative, even if they were told.

Physicians’ discomfort with discussing death may also arise from differences in patients’ ethnicity or faith. A 2015 study published in PLOS One surveyed more than 1000 physicians and found that 86% rated it “a great deal” or “quite a bit” challenging to discuss death with patients of a different ethnicity.5 In a 2016 study published in the American Journal of Hospice and Palliative Care, providers (albeit mostly nurses) rated conducting a spiritual history with patients as particularly difficult.6

A 2016 systematic review of the research lends credence to all of these reasons: “Recurrent themes within the literature related to a lack of education and training, difficulty in prognostication, cultural differences, and perceived reluctance of the patient or family,” the authors wrote.7

The problem, however, is more complex and far reaching than even those reasons, going deep into the heart of who we are as Americans, the way our healthcare system is set up, and how a big part of the economy’s growth relies on technology, Dr Chapple told Medical Bag.

“In the United States, it’s all tied up together with the idea that if we’re not living and growing and using technology to gain our salvation, there’s something wrong with us, that we have to fight, fight, fight, against death,” Dr Chapple said. “There is something about our culture and what we find acceptable and desirable that’s given us the terrible healthcare we have, that spends most of its money rescuing people from death and stabilizing them and spending so much less money on prevention and universal access to healthcare.”

While that perspective is expansive, reaching toward larger philosophical ideas regarding how our culture thinks about death, it also contains a key to learning to grapple with those conversations, Dr Chapple suggested.

How to Become Better at Talking About Death

“What palliative care people tell me is that the conversation is not difficult,” Dr Chapple said. “Part of what would be helpful is for a physician to think through for themselves what their own thoughts are about dying. What are your own fears, what is the unresolved grief you have about people you’ve lost in your life? Maybe that’s part of the internal work physicians have to do for themselves.”

Physicians who find that difficult may look for triggers they can rely on, such as initiating end-of-life care conversations when a patient reaches a certain age, or when a specific development occurs in a person’s progression of a chronic disease.

An extensive 2001 qualitative study identified 6 areas particularly important for physicians to consider in talking with dying patients8: “talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death,” the researchers wrote.

As with any skill, the secret to improving isn’t really a secret: practice, practice, practice.

“Practicing the conversation is the only way to get better at it and hone that skill,” Ms Bishop noted. “Some physicians have had access to training where they can role play with a mentor or with someone who has that skill set and get feedback on what they may want to do differently.”

Ms Bishop suggests starting these conversations by asking patients what’s important to them at this point in their life and how they feel things are going — and then listening.

“You get a lot of insight into what a person already knows about what their issues are or you may be surprised and find out what matters to them is not at all what you think it is as a clinician,” she added. “It just makes for holistic care when you have the conversations.”

But again, becoming more skilled with these conversations certainly doesn’t make them more pleasant.

“The goal of training is not to make it easy and fun,” Dr Curtis told Medical Bag. “Physicians by and large go into medicine to help people and make people feel better. To be in this position where you have to give bad news is difficult, but it is important, and being trained allows you to do it well and work with that discomfort.”

It’s also an ongoing conversation because people at different stages of life will change their opinions about what they want as circumstances or the disease itself change, she adds.

“We’re all going to die. For anyone who’s in the medical profession, there’s a certain subset of their patients who will die,” Ms Bishop said. “You can ease that burden if you start to have those conversations when someone is well and continue those conversations as the disease progresses.”

For physicians who are interested in brushing up on their communication skills in the face of bad news, there are a number of available resources, including VITALtalk and the Association for Death Education and Counseling. A list of organizations who provide assistance and information on multiple topics related to trauma, grief, dying, and death can be found here.

Complete Article HERE!

Gone but never forgotten:

How to comfort a child whose sibling has died

Children not only lose their sibling, their parents can also disappear into profound grief.

By

In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.

These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.

One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.

While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.

Children don’t forget about their lost siblings.

Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.

Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.

In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.

Make genuine room for children in discussions

The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.

But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:

Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?

To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.

Accept that children’s grief is no different to ours

Sibling bereavement researcher Betty Davies’s participants spoke to her again and again about their need for the lifelong persistence of their grief to be understood.

You never stop grieving the loss of a sibling.

They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.

They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.

Honour continuing bonds with the dead

Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.

We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.

For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.

For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.

We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.

Complete Article HERE!

Being Mortal

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

Living Apart Together: A New Option for Older Adults

Three years ago, William Mamel climbed a ladder in Margaret Sheroff’s apartment and fixed a malfunctioning ceiling fan. “I love that you did this,” Sheroff exclaimed as he clambered back down.

Spontaneously, Mamel drew Sheroff to him and gave her a kiss.

“I kind of surprised her. But she was open to it,” he remembered.

Since then, Mamel, 87, and Sheroff, 74, have become a deeply committed couple. “Most nights, I’ll have dinner with Marg and many nights I stay with her overnight,” Mamel explained.

And yet, despite the romance, these North Carolina seniors live in separate houses and don’t plan to move in together or marry. Demographers call this type of relationship “living apart together” (LAT).

“It’s a new, emerging form of family, especially among older adults, that’s on the rise,” said Laura Funk, an associate professor of sociology at the University of Manitoba in Canada who’s written about living apart together.

Questions abound about these unconventional couplings. What effects will they have on older adults’ health and well-being? Will children from previous marriages accept them? What will happen if one partner becomes seriously ill and needs caregiving?

Researchers are beginning to focus on these concerns, said Susan Brown, chair of the sociology department and co-director of the National Center for Family and Marriage Research at Bowling Green State University in Ohio. “It’s really remarkable that older adults are in the vanguard of family change,” she said.

How many older adults are in LAT relationships? According to a 2005 survey by the National Social Life, Health, and Aging Project, 7 percent of individuals between 57 and 85 years old described themselves as living apart together. (Some experts contend the measure used in this survey was too broad, allowing couples who are dating to be included.)

Last month, at the annual meeting of the Population Association of America in Denver, Huijing Wu, a graduate student in sociology at Bowling Green State University, presented an analysis of nearly 7,700 Wisconsin adults age 50 and older surveyed in 2011. Married couples accounted for 71.5 percent of that group, single people accounted for 20.5 percent, and people who were “partnered but unmarried” accounted for 8 percent.

Of the partnered group, 39 percent were in LAT relationships, according to a more focused definition of this arrangement, compared with 31 percent who were dating (a less committed, shorter-term relationship) and 30 percent who were cohabiting.

Jacquelyn Benson, an assistant professor of human development and family science at the University of Missouri, is among a handful of researchers who’ve asked older adults about their experiences in LAT relationships. “Older adults really see this as a lifestyle choice, not a relationship of convenience,” she said.

Benson’s 2016 study of 25 older adults (from 60 to 88 years old) in LAT relationships found various motivations for these partnerships. Seniors wanted to have “intimate companionship” while maintaining their own homes, social circles, customary activities and finances, she discovered. Those who’d been divorced or in unhappy earlier marriages didn’t want to tie themselves down again and believed a degree of distance was preferable to day-to-day togetherness.

Also, several women who’d cared previously for sick parents or husbands wanted to avoid assuming caregiving responsibilities or the burden of running a household again.

“It’s a been-there-done-that attitude,” Brown explained. “I took care of my husband, I reared my children, and now it’s my time.”

Caregiving is a thorny issue, on multiple fronts. The only known study to look at caregiving in LAT relationships, out of the Netherlands, found that about half of partners planned to provide care, if needed — a sign of ambivalence. But when illness entered the picture, partners offered assistance nonetheless.

“People in LAT relationships forget there’s going to be this emotional entanglement and they won’t just be able to walk away,” Benson said.

Other complications can arise if adult children resent or fail to recognize their older parent’s outside-of-marriage relationship. “In some cases, when a partner wants to step in and have a say, they’ve been pushed out by family members,” Benson noted.

One older woman in her study learned that her partner had been placed in a nursing home by his family only when she couldn’t reach him at home anymore. “They didn’t include her in the conversation at all,” Benson said, “and she was pretty upset about it.”

Only a few studies have evaluated the quality of LAT relationships, which has implications for seniors’ well-being. One found that older adults in these relationships tend to be less happy and receive less support from partners than people who are married. Another, presented at last year’s Population Association of America meeting, found that the quality of LAT relationships isn’t as strong as it is for marriages.

That hasn’t been true for Luci Dannar, 90, who’s been involved with James Pastoret, 94, for almost seven years, after meeting him at a dance at a Columbia, Mo., senior center.

“The first feeling I had for Jim was sorrow because he seemed to be grieving from his wife’s death five months before,” said Dannar, whose husband and oldest daughter both passed away 19 years ago. “I thought maybe I could be helpful to this man because I’d been through those deaths.”

After getting to know Pastoret and realizing she liked him, Dannar laid down her terms. “I told him, I don’t ever want to get married and he said ‘I don’t either,’” she remembered. “And I said if you have a jealous bone in your body, don’t darken my door again. Because I lived 53 years with a jealous husband, and I never want to go through that again.”

Neither wanted to give up their apartments in a retirement community, about 300 steps from each other. “I like my independence,” said Pastoret, who taught in the school of natural resources at the University of Missouri for 33 years. “When I go home at night after supper with Lucy, I’m very happy to be by myself.”

“He comes over at 5 every evening and leaves here about 9, and then I have two hours by myself — my private time,” Dannar said. “We really like our space, our time alone, and we don’t need to be together 24 hours a day.”

Unlike other older LAT couples, they’ve talked about the future and toured assisted living centers together. “Someday, if he needs me to help him or I need him to help me, we will probably rent an apartment together, with our own bedrooms, and hire extra help,” Dannar said. “Our plan is to take care of each other until one of us is gone or we go into a nursing home.”

William Mamel is already making good on a similar promise to Margaret Sheroff, who had a mass removed from her gall bladder late last year and recently was hospitalized with complications from chemotherapy.

“With her in the hospital, I spend most of my days there,” said Mamel, who was a good friend of Sheroff’s with his wife of 37 years, Betty Ann, who passed away 2½ years ago. “Being caregivers for each other isn’t even a question.”

Their situation is complicated by Sheroff’s guardianship for her husband, John, who has advanced dementia and resides in a nursing home. “Marriage isn’t in the picture for us, but that doesn’t matter,” Sheroff said. “We’re taking one day at a time and enjoying being together.”

“Just to be able to have someone that you can wake up with in the morning and talk to, someone to have coffee with and see the smile on their face, is such a blessing,” she continued. “At this time of life, it’s really, really important to have someone in your life who’s there for you.”

Complete Article ↪HERE↩!

Creating Rituals To Honor The Dead At Long-Term Care Facilities

Death and its companion, grief, are often ignored at nursing homes and assisted living centers. Yet ignoring the loss can lead to depression, staff burnout and other problems.

Staff members at Gray Health & Rehabilitation participate in the annual bereavement ceremony.

By Judith Graham

One by one, their names were recited as family members clutched one another’s hands and silently wept.

Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.

Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.

But the tides of emotion that ripple through these institutions are rarely openly acknowledged.

“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”

At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.

Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.

Sylvia McCoullough wraps her arm around daughter Kim Kohlmayer as they mourn Sylvia’s father, Melvin Henry “Bo” Daniels, at an annual bereavement ceremony at the Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.

“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.

Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.

Those mourning former nursing home residents pray together near the end of an annual bereavement ceremony at Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.

“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.

Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.

A balloon release concludes the annual bereavement ceremony at Gray Health and Rehabilitation in Gray, Ga.

Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.

“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.

Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.

“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.

Cathy Bass (left) and granddaughter Heaven Melton attended the bereavement ceremony at Gray Health & Rehabilitation in remembrance of Bass’ brother, Timothy Marion Sanders. “I miss him every day,” she says.

Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.

If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.

Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.

Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.

Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.

“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”

When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.

Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tom Rockenbach (center) is executive director of the Carlyle Place senior living facility in Macon, Ga. Rockenbach is considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.

“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.

Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”

One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”

Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.

Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”

She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.

“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.

In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”

Complete Article HERE!