Category: Death Education

Posted on

8 tips for understanding the ‘netiquette’ of death and grief

By Mark Ray

When Carla Sofka’s mother died just before Thanksgiving 2017, Sofka didn’t immediately post the news on social media. She was busy planning the funeral, making travel arrangements and getting an obituary ready for the weekly newspaper in her mother’s community.

“We had 23 hours to get the information to them if we didn’t want it to be 10 days before Mom’s obituary was in the local paper,” said Sofka, a professor of social work at Siena College in Loudonville, New York.

Then the phone rang.

Unbeknownst to Sofka, the funeral home had posted the obituary on its website, and almost immediately a childhood friend had spotted it and shared it on Sofka’s Facebook page.

“The minute that obituary showed up on my feed, people who saw it started posting comments and messages to me,” she said. “I didn’t even know this was going on, because I didn’t know it was there.”

What makes Sofka’s story ironic is that she has been writing and teaching about the impact of technology on grief and dying for decades. She even coined the term “thanatechnology” (“thana-” means death in Greek) in 1997. But in her moment of grief, she never thought to say to the funeral director, “Please don’t post Mom’s obituary on your website until we tell you that we’ve notified the people who need to find out another way.” (By the way, that funeral home now asks families whether posting is okay.)

Lee Poskanzer, CEO of Directive Communication Systems, which helps clients safeguard digital assets in their estates, experienced a more pleasant Facebook surprise in 2010 when he posted news of his mother’s death on Facebook.

“A very close friend of mine, who I would never have thought about calling, actually hopped on a plane and was able to make my mom’s funeral the next day,” he said.

The Social Media Rules Have Changed

As Poskanzer and Sofka’s stories illustrate, digital technologies have changed the rules surrounding grief and dying.

“How does one decipher a uniform approach when our society is using technology in so many diverse ways and each one of us has a different approach to our online presence and our digital footprint?” Poskanzer asked.

Fortunately, experts like Poskanzer and Sofka have begun answering those questions. While the landscape is still shifting, it’s possible to discern some basic rules of “netiquette.”

Here are eight tips about death and social media:

1. Leave the scoops to CNN and Fox News. If you’ve heard about a death but haven’t seen a Facebook post from the next of kin, that could be because family members are still trying to contact people who need to hear the news firsthand. Sofka said a good question to ask yourself is, “Is it your story to tell?”

2. Think before you post. Even when it’s appropriate to share, make sure what you’re sharing is appropriate. Don’t post painful or disturbing information without the family’s consent — and even then consider whether sharing is appropriate. “We may not recognize that we could be harming someone by posting or tweeting or putting a picture on Instagram,” Poskanzer said.

3. Avoid being cryptic. Nuance vanishes in cyberspace. A post that said “I’m praying for the Johnson family at this difficult time” could refer to anything from a death to a job loss to a house fire. “You have to know the poster in order to understand a little bit where they’re coming from,” Poskanzer said. When in doubt, pick up the phone.

4. Remember that news travels fast. When Sofka’s aunt died unexpectedly, she elected not to tell her teenage daughter, who was on vacation in Florida and didn’t know her great aunt well. Unfortunately, cousins began posting stories about the deceased woman on Facebook, so Sofka’s daughter quickly found out and wanted to know what was happening. “I can’t believe I didn’t expect that,” Sofka said.

5. Be patient. “Sometimes people watch how many people like a post or how quickly they acknowledge it,” Sofka said. “Somebody who’s grieving doesn’t have the time or energy to focus on that.” And if you’re on the other side of the situation, consider posting something like Sofka did after her mother’s passing: “I’m overwhelmed by the caring and the kindness of the postings. Please forgive me if I don’t have time to respond right now.”

6. Watch out for problems. Unfortunately, online death notices can attract everything from negative comments to fraudulent GoFundMe campaigns allegedly set up to pay for funeral expenses. “As family members and friends, if we see that, we need to contact the family immediately so somebody can contact GoFundMe,” Poskanzer said.

7. Be helpful — but not too helpful. It’s fine to offer to monitor the family’s online presence for problems, but don’t go too far. Poskanzer recalls a woman whose husband had just passed away. “While she was sitting shiva (mourning in the Jewish tradition), somebody had memorialized the page to her husband’s Facebook,” he said. As a result, the grieving woman no longer had access to the page. Facebook also has information about legacy contacts; people chosen in advance to oversee memorialized accounts.

8. Adjust your response to the situation. Poskanzer lost a friend recently who was very active on social media — to the point of chronicling her cancer battle online — so sending online condolences after she died made sense. On the other hand, Sofka talked with a woman who’s not active on social media and had recently lost her father. “She said, ‘Nobody sent cards; that was the hardest thing for me, because if felt like nobody cared,’” Sofka recalls.

As the rules of netiquette change — funeral selfies, anyone? — perhaps the best rule to follow is the Golden Rule: Blog, post and tweet about others as you would have them blog, post and tweet about you.

Complete Article ↪HERE↩!

Posted on

Deathwives, Death Cafes And Death Doulas.

Learning To Live By Talking About Death.

By Robin Seaton Jefferson

“To die will be an awfully big adventure.” Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.

But things were different in 1902 when Peter Pan first appeared in the book “The Little White Bird.” We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.

Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.

But people like Lauren Carroll are trying to change all of that. Carroll and her partner, Erin Merelli, formed Deathwives in hopes of forging a cultural shift which encourages people to think and talk more freely about death. They describe Deathwives as “a collective of professionals who care about the practice of good death.” And they want to educate others about their end of life options which they say should include in-home funerals and death doulas.

“You have the right to a good death,” Carroll said. “We seek to widen the narrative around death and dying and support our community as we remember how to care for one another till the very end.”

A former funeral director and current hospice volunteer, Carroll serves on the board of directors for the National Home Funeral Alliance (NHFA). She said she wants to create connections between funeral homes, home funeral educators, death doulas and families. Merelli is a death doula, ceremonialist, funeral officiant and grief counselor. She is often called to sit with people as they die and to “create ritual and sacred space around the dying process.”

Most people don’t know that home funerals are an option available to them, Carroll said. “There have never been laws against this. You have the freedom to die at home and to take care of your loved ones at home. The family legally owns the body even after death in a hospital. The only law is that you have 24 hours after death to refrigerate or cremate the remains.”

According to the NHFA, “keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials and private events are not under the jurisdiction of the state or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.” The National Home Funeral Alliance offers a list of legal requirements on the books in each state—either statutes that are applicable to all or regulations that fall under the state mortuary board’s set of procedures applicable for licensed funeral directors only.

“Keep this in mind: there are no funeral police,” the alliance states. “And there are exceptions to every rule, many of which happen when someone dies in the middle of an ice storm or a weekend or a holiday or a multitude of other unpredictable circumstances. Even under perfect conditions or professional care, many of these requirements are not logistically or practically enforceable.”

When America was a new nation, families cared for their dead in their own homes. The preparation, dressing and readying for a funeral was done there, and the caskets were typically built by the family themselves. As parlors gained popularity, families held their funerals in them. Traditionally rooms filled with a family’s finest possessions, parlors were ideal locations for honoring the dead. The parlors of grander homes even had a “death door” for the removal of the deceased family member, as it was considered improper to remove a body through a door the living entered.

The Civil War brought about the practice of embalming, as so many men were dying far from home, and the practice allowed the time needed to bring the bodies home to their families. With embalming came the appearance of funeral homes, funeral directors, morticians and undertakers all over the United States. The National Funeral Directors Association (NFDA) as well as the first school of mortuary science—the Cincinnati School of Embalming, now known as the Cincinnati College of Mortuary Science—were both formed in 1882. It was really the beginning of the same funeral process we use today, though advances in the profession have improved the ways that morticians care for the body as well as the ways that families can remember their dead.

And new trends on how to honor the dead and even just how we talk about death are being presented all the time. Environmentally-friendly funerals are being offered by so-called “green” funeral homes. Advocates of these services say that it’s less expensive, uses less natural resources and eliminates the use of hazardous chemicals such as formaldehyde.

And apparently we’re using a lot. According to an article by Tech Insider, more than 800,000 gallons of formaldehyde are put into the ground along with dead bodies every year in the US. In addition, conventional burials in the US every year use 30 million board feet of hardwoods, 2,700 tons of copper and bronze, 104,272 tons of steel, and 1,636,000 tons of reinforced concrete, Tech insider reported. “The amount of casket wood alone is equivalent to about 4 million acres of forest and could build about 4.5 million homes.”

According to the NFDA, a green funeral may include no embalming or embalming with formaldehyde-free products; the use of sustainable biodegradable clothing, shroud or casket; the use of recycled paper products; serving organic food; locally-grown organic flowers; funeral guest carpooling; and natural or green burial.

“In a purist natural or green burial, the body is buried, without embalming, in a natural setting,” the NFDA states. Any shroud or casket that is used must be biodegradable, nontoxic and of sustainable material. Traditional standing headstones are not permitted. Instead, flat rocks, plants or trees may serve as grave markers. Some cemeteries use GPS to mark the locations of gravesites. A natural or green burial may also simply mean burial without embalming, in a biodegradable casket without a vault, when permitted by a cemetery.”

Jon Hallford, also a member of the Deathwives Collective, owns Return to Nature Burial and Cremation in Colorado Springs, Colorado. Hallford told 9NEWS.com in Denver, Colorado last month that he plans to begin offering aquamation as an alternative to cremation. “Aquamation uses an alkaline hydrolysis system that consists of a metal chamber that uses water and lye for the cremation process, which is a cleaner process than the traditional cremation,” 9NEWS reported. “Once he has the system in place, he’ll be the only funeral home in Colorado to offer the service.”

The environment isn’t the only reason we’re talking more about death. Death doulas are becoming more mainstream. Just as a doula or birth companion provides guidance and support to a pregnant woman before, during or after the first days of the life of her baby, the death or end of life doula accompanies the dying person and their loved ones through the final months, weeks and days of their life. The doula provides support, resources, education and friendship for this period of life, whether it lasts a year or a day.

Then there are now so-called “Death Cafes,” where people gather to share cake and coffee, tea or hot chocolate and talk about death. A “Death Café is a space where you talk about death to become more engaged with life. Such is the paradox of a Death Café,” writes Abby Buckley about a meeting at the Alchemy Café in Gawler, South Australia. “We came from all walks of life, aged 6 months to 64 years old, from all over South Australia but met as equals because we all have one thing in common. We know we are going to die. We don’t have many spaces in our lives or our culture that are conducive to talking about death and dying. But people are hungry to talk about their experiences, to listen to others and to reflect on death.”

Death Cafés typically offer visitors an opportunity to discuss death without judgment, without prescribed ideology, and without any sales pitches. They are not grief counseling or bereavement sessions. There are no agendas, objectives or themes, rather they are often philosophical—and at times, humorous—discussions about death.

Death Café is both the name of the organization that created the format of the death-discussion groups and the term for the meetings themselves. To date, some 9,045 Death Cafes have taken place in 65 countries—4669 of them in the United States—since September 2011.

Death Café calls Death Café a “social franchise,” meaning that people who sign up to the organization’s guide and principles can use the name Death Café, post events to the website deathcafe.com and talk to the press as an affiliate of Death Café.

The Death Café model was developed by the late Jon Underwood and his mother, Sue Barsky Reid, based on the ideas of Swiss sociologist and ethnologist, Bernard Crettaz.

It’s not surprising the concept of Death Cafes has taken off. There’s been a tendency in the last few years to bring death out from among the list of forbidden topics.

“We have become such an isolated nation,” Carroll said. “Death is normal, and for some reason we’ve made it seem like the most abnormal, scary thing. We don’t even talk about it. Like Jon Underwood said, ‘Just like talking about sex won’t make you pregnant, talking about death won’t make you dead.’”

Carroll said society has removed the family from taking an active part in the death process “other than picking out the casket and flowers. In the past we had to prepare and think about it. It helps the healing process to be more hands-on, and it has been proven across the board that it helps to be active in grief.”

With Deathwives, Carroll hopes to teach others to have a better “relationship” with death, to take away the fear. “I have a healthy relationship with death. Knowing I’ll die, and talking about it, has made my life fuller. That’s how everyone single person should live.”

Carroll compared the moment of death to the moment of being born. “We don’t know what happens after death, just as a baby comes into the world having no idea what’s about to happen. We’ve all done it before. We were all born. We opened our eyes to the unknown. I have a feeling what’s next is going to be pretty amazing. If you think about it, no person who has had a near-death experience has ever come back and said that it was awful.”

Complete Article ↪HERE↩!

Posted on

Causes of Mortality

Our Perceptions vs. Reality

by Jennifer Thomas and Juli Fraga

Understanding health risks can help us feel empowered.

Death, as the old adage goes, is one of only two certainties in life (the second being taxes).

But when it comes to what actually kills us, are we really correct in our assumptions? As it turns out, no.

Recent data gathered by UCSD students that looks at the biggest causes of mortality shows we might be worrying about the wrong things — partially as a result of what we see covered the most in the media.

This particular data set looks at 10 of the leading causes of death, including three causes of mortality that receive substantial media attention.

The conclusion?

Many of us have false expectations about death. There’s a sizeable discrepancy between how people think we die and how we actually die.

So how does this false vision of death impact us? How far from reality are we? What are the real numbers behind the causes of death — and what do they actually tell us?

The answers and the data may well lead you to a proactive (and preventive) healthcare approach.

Media coverage doesn’t offer a clear indication of what’s actually killing us

The data shows that what the media is covering in terms of what kills us doesn’t always accurately represent the truth. And this can do more harm than good.

When people hear these things, they take them to heart.

The result: Anxiety and fear can spike, resulting in avoidance behaviors that impact a person’s well-being. Even worse, people living with mental health conditions, such as depression, anxiety, and post-traumatic stress disorder may be triggered by media reports, which can worsen their symptoms.

When inaccurate news becomes widespread, it leads people to believe danger exists where it may not. Like a game of telephone, this false information can get twisted and create a larger problem that doesn’t truly exist.

There’s also the issue of people’s expectations about death that are affected by the media focusing more on the things less likely to kill us.

Why it’s important to understand what truly has the most potential to kill you

Thinking about our own end of life — or death — at all can be uncomfortable. But it can also be extremely beneficial.

Dr. Jessica Zitter, an ICU and palliative care physician explains it this way: “Understanding the typical trajectories that are usually seen as people approach the end of life can be very helpful because if people know what final exit paths tend to look like, they are more likely to be prepared for their own as it approaches.”

Zitter goes on to say: “The media tends to ignore death from disease, while death from suicide, terrorism, and accidents are atypical in reality [based on the statistics] but sensationalized in the media. When death is treated in an unrealistic way, we rob people of the opportunity to attend to disease and make plans for the death that they would want to have.”

“You cannot have a good death if you don’t believe you are going to die. When the media misdirects our attention from death by disease to death from sensationalized causes, it implies that death can be avoided if these extreme circumstances can be avoided,” she says.

You can learn more about Dr. Zitter’s work in her book, Extreme Measures.

So what does that data say?

While heart disease and cancer together make up more than halfTrusted Source of all causes of death in the United States, these two health conditions are less than a quarter of what’s covered by the media.

So while these two conditions make up a large portion of what kills us, it’s not necessarily being covered in the news.

On the other side of the spectrum, terrorism accounts for less than 0.1 percent of deaths, despite the fact that it makes up 31 percent of news coverage. In fact, it’s overrepresented by a whopping 3,900 times.

Meanwhile, though terrorism, cancer, and homicides are the causes of death that are most mentioned in newspapers, only one is actually in the top three causes of mortality.

Furthermore, homicide is more than 30 times overrepresented in the media, but only accounts for 1 percent of total deaths.

Our concerns drastically differ from the facts

As it turns out, the causes we worry about killing us — demonstrated by what we Google the most — aren’t often in line with what actually ails Americans.

What’s more, Googling symptoms or potential things that can kill us without also discussing these things with a doctor can cause anxiety to arise. This can, in turn, set off a stream of unwarranted ‘what if’s’ such as “What if such and such happens?” “What if I’m not prepared?” or “What if I die and leave my family behind?”

And these unsettling thoughts can catapult your nervous system into overdrive, igniting the body’s stress response, also known as “fight or flight.” When the body enters this state, the heart beats faster, breathing becomes more shallow, and the stomach churns.

Not only is this physically uncomfortable, but it can also impact your physical health by raising blood pressure, heart rate, and lowering immune system functioning.

Now, back to the data…

It would seem that while we should be focusing on heart disease — which is responsible for 31 percent of deaths — it’s only 3 percent of what people search for on Google.

Conversely, searches for cancer are disproportionate to the actual likelihood of getting the disease. While cancer does make up a large portion of deaths — 28 percent — it accounts for 38 percent of what’s searched on Google.

Diabetes, too, shows up in Google results (10 percent) far more than it causes death (3 percent of total deaths).

Meanwhile, suicide has several times more relative share in the public’s eyes compared to the actual death rate. While only 2 percent of deaths in the United States are by suicide, it makes up 10 percent of what the media focuses on and 12 percent of what people search for on Google.

But there’s good news — we’re not always off the mark

Despite the obvious disparities about what causes mortality versus reported causes of death, some of our perceptions actually are correct.

Stroke, for example, makes up 5 percent of deaths and is in about 6 percent of news coverage and Google searches. Pneumonia and influenza, too, are consistent across all three charts, accounting for 3 percent of deaths and 4 percent of both media focus and Google searches.

While it might not seem like a big deal to have a firm grasp on the realities of what causes us to die, there are definite psychological and physical benefits that come out of this awareness.

Understanding health risks and safety concerns can help us better prepare for unforeseen outcomes, which can feel empowering — like taking preventive measures for heart disease.

When you know about risk factors, you can also seek comfort from healthcare professionals who can answer questions and offer reassurance. For example, someone worried about cancer may receive additional health screens from their physician, which can help them take charge of their well-being.

So next time you find yourself worrying about a news report you’ve just read or a disease you only just learned about but are Googling at 3 in the morning, take a step back and consider whether you really need to be worrying.

A better understanding of death allows us to embrace a better understanding of our life and health, so we can own it — every step of the way.

Complete Article ↪HERE↩!

Posted on

Going gentle

A sociologist explains how to get the most out of the final months of life

By Bob Holmes

We are all going to die — and most of us will be able to see death coming, months or even years before it happens. That foreknowledge means we should embrace the end of life as a distinct life stage, just like childhood, adolescence and maturity, says Deborah Carr, a sociologist at Boston University. In the 2019 Annual Review of Sociology, Carr and her co-author, Elizabeth Luth of Weill Cornell Medicine in New York, explore how to make the most of this final stage in our lives.

Carr spoke with Knowable about how to find a good death. This conversation has been edited for length and clarity.

You claim that the end of life is a life stage that’s unique to the modern world. Why do you say that?

In past centuries, people tended to die younger, but more important, they tended to die quickly after they became ill. The end of life was basically a week, if that. People died at home. Today, with people dying of conditions like dementia and cancer, someone can experience a month or 10 years between diagnosis and actual death. And today, ventilators and feeding tubes allow people to prolong the length of their life, even if not the quality of life. So it’s a longer and more uncertain stage than in the past.

Is it fair to say that the objective of the end of life is to find a good death?

I think that is one of the main objectives. And that’s a new construct. In the days when people died suddenly, death was really a discrete event. You didn’t have to find ways to soothe them or provide music or other amenities. Today, because people tend to die over prolonged time periods, there’s a real emphasis on ensuring that the quality of that experience, whether it’s a week, a month or six months, is as positive as possible.

What are the components of a good death?

A good death typically has several pillars. First and foremost is freedom from pain. A sizeable portion of dying patients have physical pain and difficulty breathing. So the use of painkillers, palliative care, devices that allow someone to breathe comfortably, is very important.

Another is self-determination. Dying patients and their families want to have some control over the process. They want to choose where they die: at home or in a hospital. They want to choose what kind of treatment they get, whether they get life support.

And the third pillar is a broad category called death with dignity. People want to be treated as a whole person. They want their spiritual and psychological needs met. People even think about planning a funeral that has their favorite music and foods. They want to die being the human being they were in their younger years.

An increasing number of people in the US are dying in their homes or in hospices, as shown by these CDC data from 2003 and 2017. “Hospital” includes inpatient, outpatient, ER and dead on arrival. Hospice deaths in 2003 were just 0.2% of US deaths, compared with 7.8% in 2017.

Are there socioeconomic factors that affect access to a good death?

A good death, like a good life, is often a matter of socioeconomic privilege. There are stark race differences in satisfaction with pain treatment at the end of life. There are a lot of explanations for that, but one is discriminatory practices in prescribing painkillers.

Economic factors probably matter most for advance care planning. Low-income people don’t tend to have living wills. One of the main reasons is they can’t afford a lawyer, or they don’t go to a lawyer for a property will because they don’t own a home. Usually it’s when you go to make a will that the lawyer asks if you would like a living will as well.

Socially isolated people are especially vulnerable to a bad death. Family and loved ones are critical in advocating for quality care, for ensuring that one has a clergy person by their side, getting help, making decisions in a sensible way. That’s a lot more difficult for those who don’t have a spouse or child or close friend nearby. So social isolation is a risk factor for a low-quality death.

This is a life stage that most of us will pass into, and we can only do it once. What can we do to make it as good as possible?

Data show that as people get closer to death, they often change their minds about things. Their values change, they start to value things like comfort, spiritual comfort, relationships with family, and they stop fighting. There’s less of a desire to live longer, and more to live better. People need to think about priorities, think about what’s important to them and their families, and adhere to their values, whether personal or religious. That really guides a lot of decision-making. Open and honest communication, along with formal preparations like advance care planning, are healthy approaches that bring both patients and their families peace.

Families and patients can prepare for the end of life by doing things like writing a living will, and specifying what kind of treatment plan one wants, even specifying how much money to leave behind for one’s children and one’s spouse. All of that planning is guided by some sense of when one’s end is coming. That’s why it’s really important that doctors try to give some estimate of how long someone’s future lifespan is. But that’s very hard to do, both psychologically and technically.

The other thing is to communicate with the people close to you. People need support, both practically and emotionally. They need people to talk to, and literally to hold their hand, but they also need people to help them with decision-making, financial decisions, figuring out whether they’re going to spend their last week at home or in a hospital. That communication can be very helpful.

What is society doing right today?

We have rising numbers of people using hospice, which emphasizes soothing of pain and palliation, rather than treatment. I think that’s a real advance. Patients and family members who receive hospice care are almost uniformly positive about the social support they receive.

The proportion of Americans who have living wills, or who appoint a family member to be decision-maker, has skyrocketed. And under the Affordable Care Act, doctors are reimbursed for the time they spend discussing end-of-life issues with their Medicare patients. That’s really important, because doctors are so rushed today. Being reimbursed to take the time to ask older patients what they want has been another real advance. Some private insurance plans cover end-of-life discussions and others don’t. But nearly all older adults in the United States have Medicare, so in practice, nearly all older adults have this benefit. People under age 65 with a permanent disability also may qualify for Medicare, and consequently are eligible for this benefit.

For-profit hospices are on the rise in the US and nonprofit hospice numbers are falling, raising concerns about the quality of care provided and making it more difficult for some people to spend their final days at home. Data are for hospices that provide care to Medicare beneficiaries.

What are we doing wrong?

Despite all the positive trends, there are still millions of Americans who do not take steps to prepare adequately. It goes back to fear and discomfort about death. People are afraid to talk about these issues — they may think “Oh, it looks like I’m after my mom’s inheritance if I talk about it.” But these are conversations that everybody needs to have. Just like parents should have the drug conversation, people should have the death conversation, to talk about their hopes for what they will experience at the end of life. You aren’t going to achieve what you want unless you articulate it to people who can help you sort it out.

If we can normalize and destigmatize death, and recognize it as a normal part of life and aging, that will empower people to discuss these difficult issues.

The other problem is that for all the strengths of hospice, the number of nonprofit hospices has been diminishing dramatically, and the number that are for-profit has been increasing dramatically. The people who work for hospices are for the most part kind and loving workers, but the for-profits are motivated to make money, so they’re often treating only the patients who are less expensive to treat. They’re often not delivering care to rural residents who need a lot of travel time. They’re shifting hospice care to nursing homes, because that’s cheaper. But that means fewer people are given the opportunity to die at home if they wish. The move to for-profit hospice is undermining the quality of care, and it’s limiting who gets that care.

So far, we’ve been talking about the needs of people at the end of life. But does the final stage of life offer opportunities as well?

One is the opportunity to construct a “post-self,” the self people want to live on after they die. You often hear that people want to leave the world a better place. End of life is a time when they can really think about what kind of legacy they want to leave behind, whether it’s financial or emotional or social.

It’s also one of those rare opportunities to be wholly introspective. There’s long been a theory that as we get older we care less about possessions and the larger social network, and want to spend our final days dedicating our energy to those people who are nearest and dearest to us. This is an opportunity to show gratitude towards loved ones, to focus on spiritual needs, review one’s life and give love and support to those you’re going to leave behind. It’s sometimes important for dying people to tell family members, “I’m ready to go now, and you can be OK with it.” Having those difficult conversations can make people feel more prepared for the transition.

What are the areas we need to work on in the future?

A big one is physician-assisted suicide and euthanasia. That’s not something that’s taken hold in the US. There’s certainly attitudinal support for it — all the survey data show that people think if someone’s terminally ill, with no chance of recovery, and of sound mind, they should be given the option for euthanasia. I think that’s going to be one of our big questions over the next 10 years about end-of-life care.

Complete Article ↪HERE↩!

Posted on

My Dying Wife Has a Challenging Request for Her Funeral

She doesn’t want her estranged family to attend. I want to respect her wishes, but am not sure the excluded family members will.

By Lori Gottlieb

My wife and I have been together for 30 years. Five years ago, she started dialysis, and that same year her mother’s divorce from my wife’s stepfather was finalized. Like many divorces, it pretty much split up the family.

My wife’s health is declining rapidly now, and she was also denied placement on the transplant list due to other health issues. We have been discussing her death, and my wife has expressed that she does not want her ex-stepfather or two of her siblings to attend her funeral.

When my wife made her wishes known to her mother, her mother said that my wife’s ex-stepfather has every right to attend the funeral because he raised her since she was about 8 years old, and that the two siblings also have every right to be at her funeral because they’re her brother and sister.

My wife explained that she did not want them at her funeral, because of how her ex-stepfather treated her when she was growing up and because the two siblings sided with him during the divorce. But her mother reiterated that she wouldn’t do anything to stop these people from attending the funeral.

I told my wife that the only way to make sure her wishes are met is to not tell her family about her passing until after she has been laid to rest. My wife agreed that this may be the only solution. Is this the right course to take?

Louis
San Antonio, Texas

Dear Louis,

I’m so sorry that your wife is ill, and I can only imagine that the prospect of her wishes not being met adds substantially to the stress you’re experiencing. But what seems to be getting lost in the understandable turmoil is that your wife is still here, which means she has agency over how she interacts with these people before the funeral happens.

Let’s back up for a minute. What’s complicated about funerals is that not everyone agrees on whom they’re for. Are funerals for the dying, comforted by the knowledge that they’ll be surrounded by friends and family when laid to rest? Or are funerals for the living, a chance to grieve in the company of others and get one final goodbye? Whose comfort and peace of mind are funerals for?

It sounds like you and your wife believe that funerals are for the person who died, and therefore this person should determine before her death who will be there. And it sounds like your mother-in-law believes that funerals are for the living, and therefore that your wife’s ex-stepfather and siblings will want to be there. You probably won’t resolve this philosophical difference—though understanding it may help you to be more compassionate toward your mother-in-law’s view—but you do agree on one thing: These family members mean to attend the funeral.

The question is, why? You don’t say what these relationships are like now—whether your wife is on speaking terms with these relatives; whether they know about her prognosis; whether they’ve shown any concern for her; whether, perhaps, you’ve kept your wife’s condition from them so they haven’t had an opportunity to share their concern. Nor do you say how your wife was mistreated growing up, or whether her mom has acknowledged the extent of the mistreatment. Maybe your wife spoke with her mom about her wishes because she’s no longer in contact with these relatives, but by not communicating with them directly, she puts herself in a position of powerlessness, which may be how she felt growing up and again during the divorce.

Banning people from a funeral is both a personal request and a strong public statement. At least in part, it’s a declaration to all who attend that these people hurt your wife deeply, and in this way, her pain would finally be acknowledged. This is what her wish is fundamentally about: a way for her to deal with the pain of the past.

Quite clearly, though, there’s a catch. If banning them from the funeral represents a final, public acknowledgment of her pain, the one person who needs that acknowledgment most won’t be alive to see it. So maybe it’s worth considering what might bring your wife even more peace than their absence at her funeral: the opportunity to be heard by them now. In my therapy practice, I’ve seen people with terminal illnesses spend the time they have left in different ways. Some people don’t change much—they hold on to their anger and resentments and die with them firmly in place. Others step far outside their comfort zone and grow tremendously in ways that feel immensely gratifying.

I don’t know which route your wife will choose, but here’s an option for her to consider. Instead of saying to her family members, essentially, “I’m angry with you and I get the last word!” (because by the time they learn about the funeral they missed, she’ll already be gone), she might say, “I’m angry with you, and I’d like to understand more about what happened between us before I die.”

She may learn that these relatives don’t realize how much they hurt her; or that they feel bad for having hurt her; or that they feel hurt by her, and there’s another side of the story she hadn’t been willing to consider before—her own role in the family drama. If that’s the case, there might be room for compassion on all sides, and while compassion won’t erase what happened in the past, it might pave the way for a greater understanding that allows a connection to find its way into their lives. And that small change can be potentially transformative, especially at this time in her life.

Of course, just because your wife does something differently doesn’t mean other people will. If they’re not willing to consider your wife’s point of view (remember, they don’t have to agree with it), if they place all the blame on her or are rude or insulting in these conversations, your wife can take a different tack. She can say she believes that the time to show respect is while a person is still alive, and if they can’t show her respect in life, it would be disingenuous of them to pretend to “pay respects” when she’s dead. For this reason, it would upset her to have them at her funeral, and if they genuinely want to pay respects, they can do so by respecting her preference for that day to go as she wishes.

They may say fine. Or they may still insist on coming, in which case she can ask them point-blank, “Why are you insisting on coming to a funeral for someone whose feelings you don’t care about and who doesn’t want you there?” Just hearing the stark truth in this way may encourage them to reconsider.

But here’s the thing: No matter what happens, your wife will have gotten to say her piece while she still can. Whether you have a private service or they attend her funeral, it won’t matter as much as the fact that she was proactive and forthright, spoke her truth directly to the people involved, and took control of what she had control over—how she wanted to live in a way that expressed her self-worth. Some people go their entire lives and never give themselves this opportunity. She doesn’t have to be one of them.

Complete Article ↪HERE↩!

Posted on

Exploring the End with a Death Doula

By

Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.

Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.

Posted on

Getting Back to Sex After Pregnancy Loss

Though your body might be ready to return to sex after a miscarriage, are you?

By Jessica Zucker

How soon can you have sex after experiencing a pregnancy loss? It’s a common question among women of childbearing age, considering that up to 20 percent of pregnancies result in miscarriage and approximately 1 in 100 in stillbirth. There’s not a standard — or straightforward — answer. Generally, physicians counsel patients to wait until they feel ready. But readiness for a woman and her partner can depend on a number of physical, and emotional, factors.

“From a medical and practical perspective, the primary thing is to ensure that the pregnancy has passed completely, the cervix has closed, and that there isn’t an increased risk of causing infection in the uterus,” explained Zev Williams, M.D., Ph.D., chief of the division of reproductive endocrinology and infertility and an associate professor of obstetrics and gynecology at Columbia University Irving Medical Center. “The timing for this depends on how far along the pregnancy was at the time of the loss and how quickly the woman’s body recovers.”

A couple’s romantic readiness is another question altogether.

Emotional roadblocks are a big factor: Women may feel reluctant to engage in sexual intimacy while still grieving their loss. Miscarriage can also change a woman’s relationship with her body, and what sex represents to a couple might shift. If this seems hard to understand, it is: I am a psychologist specializing in women’s reproductive and maternal mental health, and I didn’t fully comprehend how complex returning to sex could be until I experienced a second trimester miscarriage firsthand. Then I understood all too well: There’s no one-size-fits-all answer.

“There are no guidelines with regard to telling patients what to expect about returning to sex after miscarriage. Routinely, we don’t discuss sex after loss unless patients bring it up,” said Jessica Schneider, M.D., an ob-gyn at Cedars Sinai Medical Center in Los Angeles. “There’s research about how safe it is to get pregnant again after a loss, but not about sexual function or satisfaction.” And the fact is, sexual function and satisfaction can, and do, change.

I talked to several women about their experiences around sex after pregnancy loss to find out how they approached returning to intimacy. (The women preferred their last names not be used due to privacy concerns.)

Some women, like Ash, 36, felt ready to have sex right away. After experiencing a stillbirth, she turned to sex for healing. “It was a way to feel powerful in my body,” she said. “I felt like my body had failed me, and sex was a way to get that back.” There was one caveat though: She didn’t want to risk another pregnancy. “It felt better to engage in sexual acts that couldn’t result in one.”

Trying to get pregnant again is a sensitive topic medically and emotionally. The World Health Organization’s official stance is to wait six months before attempting another pregnancy. Recent research, however, suggests that having sex sooner doesn’t have a negative effect on future pregnancies and could actually help success rates.

“The doctor told us to wait until we were comfortable,” said Maria, 26, who has had four miscarriages. “It was nerve-wracking to return to sex. I think because I was terrified of getting pregnant again and losing it or not getting pregnant again. It was challenging mentally.”

It’s understandable to feel conflicted, but the odds of future success are good: Up to 85 percent of women who experience a pregnancy loss, and 75 percent of women who have had multiple losses, go on to have a healthy pregnancy.

Shame and self-blame can enter the bedroom after pregnancy loss and create trouble where there previously was none. Hanan, 27, thought she was ready to have sex again immediately after a stillbirth, though her doctor told her to wait six weeks. She said she felt arousal and the desire to have sex, and engaged with her husband in everything other than penetrative sex, while waiting for medical clearance. But the first time they had intercourse, she wasn’t prepared for her emotional reaction. “I cried so much after the first time. I felt very guilty,” she said. “My body wanted to, but my brain didn’t. It felt selfish and immoral — like I should have been celibate while grieving.”

These thoughts are especially challenging for women who are actively trying to conceive again. “I did not want to initiate sex after my loss, but at the same time, I did want to get pregnant again,” said Maggie, 32. “My vagina became a constant reminder of the loss.”

Some women said they resented their bodies for a perceived failure. “After my miscarriage, I couldn’t be with anyone for over a year,” Zachi, 27, told me. “The fact that my body failed impacted the way I felt sexually afterward. I carried the baby emotionally, long after physically.”

While a 2015 survey found that 47 percent of respondents who had experienced a miscarriage reported feeling guilty about it — and nearly three-quarters thought their actions may have caused it — the reality is that chromosomal abnormalities are the explanation in about 60 percent of miscarriages. Pregnancy loss cannot be prevented.

If you’ve been trying to conceive for a long time, sex following a pregnancy loss can become especially fraught — even unappealing.

“After my first miscarriage, we only had sex to conceive. It started to feel like a task,” said Gina, 30, who has experienced infant loss and two miscarriages. “That mentality compounded after my second miscarriage and killed all sexual desire for me.”

Sonali, 33, who has lost four pregnancies, had difficulty returning to the very place she got pregnant. “Sex with your other half in the bed where you conceived the babies you lost is so triggering,” she said.

“Sometimes, I’m thinking about where I’d be in my pregnancy now; how I wouldn’t be able to have sex in this position,” Maria said. “It makes me feel guilty to feel great, when I should be seven months pregnant and uncomfortable.”

Pregnancy loss can have unintended positive impacts on a woman’s sexuality, too. Zachi said that she is more assertive in her sex life because of her miscarriage. “I have to listen to my body now,” she said. “It becomes painful not to. I am a lot more sure in what I want.” A miscarriage ultimately brought Maggie and her husband closer together, she said. “During the loss, I felt like I was on an island,” she remembered. “The first time my husband and I had penetrative sex, I cried from relief, because I felt so re-connected to him.”

Having and enjoying sex again is really about one thing — personal readiness — which is what I tell my patients. It’s O.K. to feel grief and sexual desire simultaneously. “Moving on” is not a prerequisite for pleasure.

Complete Article ↪HERE↩!