Goodbye, Grandpa

– An expert guide to talking to kids about death during Covid

By Robyn Silverman

My daughter’s questions started after a family friend got sick with Covid-19.

“If people are sick, they can just give them medicine so they get better, right?” my daughter asked with the hopeful perspective of an 11-year-old. “They can just go to the hospital so the doctors and nurses can help them?”

The questions stemmed from a positive update my husband gave about his martial arts buddy, John R. Cruz, a first responder being treated at Holy Name Medical Center in Teaneck, New Jersey.

He’s one of the lucky ones.

Not everyone is as fortunate. We’ve already surpassed 124,000 Covid-related deaths in the United States and nearly half a million dead worldwide.

For adults, these numbers are shocking. For children, they are unfathomable. Some can’t even conceptualize the notion of a single death.

It’s natural for parents to want to protect children from the feelings of worry and distress we are experiencing during this pandemic, but decades of research underscores that being honest with children is the best way to mitigate feelings of anxiety and confusion during uncertain times.

Even young kids are aware of the changes in the emotional states of adults and will notice the absence of regular caregivers, including grandparents.

So how do we talk to kids about death and dying during the coronavirus crisis? These are tough talks, no doubt about it. Here are six guiding principles, with sample prompts and scripts, to keep in mind.

Assess what’s age-appropriate

While parents should always be honest about death, the information you divulge may differ in amount and depth depending on the developmental age of your child.

How do you know where your child falls? It’s a best practice to follow your children’s lead and answer their questions without volunteering additional details that may overwhelm them. If you don’t know the answer, it’s OK to admit it.

Children between the ages of 4 and 7 years old believe that death is temporary and reversible, punctuated by the fact that their favorite cartoon characters can meet their doom and then come back the next day for another episode.

Even after you explain that “all living things die” and “death is the end of life,” it’s normal for young children to ask, “When can that person can come back?” Be prepared to remind them, kindly and calmly, that “once a body stops working it can’t be fixed” and “once someone dies, that person can’t return.”

Older children grow out of this “magical thinking” as they enter tweenhood, questioning the meaning of death during adolescence, while often seeing themselves as invulnerable to it. They may want to talk with you about why someone has died and need guidance about which resources they can trust for valid information about coronavirus and Covid-related deaths.

Ask your children, whatever their age: “What have you heard about the coronavirus and how someone might get it? What do you know about what happens when someone gets sick from it?” Clarify the difference between the virus and the disease and explain who is at the highest risk for becoming severely ill from Covid-19.

Prepare yourself

A conversation about death, especially when you are reporting on a family member or close friend, is especially difficult. You don’t want to just blurt out the news without carefully considering your words. Give yourself some time to gather your thoughts and take a couple of deep breaths.

Ask yourself: Do I want another supportive adult with me while I deliver this news? Where in my home would be best to discuss this with my child? Should my child have a special toy or comforting blanket with him or her when we have this conversation?

Even though it’s best to discuss what happened with your child before someone else tells them, taking a few minutes to calm yourself down and be present is important for you and for them.

Explain what happened

If someone in your children’s world does pass away from Covid-19, be sure to tell them honestly, kindly, clearly and simply. Experts agree that parents should avoid euphemisms such as “went to sleep,” “we lost her” or “went to a better place” to avoid confusion.

Instead, you might say; “Sweetheart, remember Grandpa got very sick and has been in the hospital for the last few weeks? His lungs stopped working and couldn’t help Grandpa breathe anymore. The nurses and doctors worked so hard to try to make Grandpa’s body healthy again but they couldn’t make Grandpa better. We are so sad and sorry. Grandpa died today.”

Then pause and listen. You may need to repeat your words a second time as distress can make it difficult to digest information.

Give room for the ups and downs of grief

In a time of suffering, it can be difficult to know what to say. Honesty about your own emotions gives children permission to be open about their own confusion, sadness, anger and fear.

You might admit: “This is all so hard to take in, isn’t it? I am feeling sad, and I’m crying because I miss Grandpa.”

Don’t be surprised if some of your child’s feelings come out all at once, while others may peek out days and weeks after the death of a loved one. Be ready for the unexpected and know that, when children grieve, they may be crying one minute and playing the next. This is normal.

“Grief is not a linear process,” said Joe Primo, CEO of Good Grief, in an interview on my podcast, “How to Talk to Kids about Anything.”

Good Grief is a New Jersey-based nonprofit organization that provides healthy-coping skills to children grieving the loss of a family member.

“Grief is like a roller coaster. It’s up, down, all around. For kids and adults alike, every single day is different. And as the grieving person, you have no idea how your day is going to unfold.”

Answer questions

Many children will ask for more information and want to know why their loved ones didn’t survive. Reiterate that your loved one had Covid-19 and the medical team worked very hard but the disease made it so the body could no longer work. You might tell your child about complications such as asthma that made it difficult to breathe even before the coronavirus.

It is also normal for your child to ask if you or others in their life will get sick or die of Covid-19 so be clear about the precautions your family is taking in order to stave off the illness.

“We are doing everything we can to stay healthy. We are washing our hands with soap and water, keeping our home very clean and staying away from others to keep from getting the virus,” you might say.

“We are also wearing masks and gloves when we are at the store to get groceries. And don’t forget, we are continuing to eat nutritious food, exercise and get good rest to keep ourselves strong.”

Provide ways to commemorate and honor

Given that social distancing is making it increasingly difficult, if not impossible, to grieve alongside loved ones as we typically do when someone dies, it’s imperative that we find a way to allow children to say goodbye and remember. Studies have repeatedly found that when children are part of funerals and celebration of life events, they fare better.

“Funerals are about mourning,” Primo noted, “and mourning is a core component of a child adapting to their new norm, expressing their grief, and getting support from their community.” Without these traditional markers, find other ways to honor your loved one.

For example, have a small home-based ceremony and commemorate the person’s life by planting a tree, doing an art project, reading a poem, eulogizing and saying goodbye. You can also collect letters, video tributes and memories from others and share them with your children. Many have used Zoom to remember those who died. Ask your children, “How would you like to honor and remember _______?”

This conversation may be one of the toughest you will have with your kids, and one that, given the numbers, will be part of many families’ reality as we cope with incredible loss from the coronavirus. It’s stressful for everyone involved — for your children and for you, too.

Continue to reach out for the support you need so you and your children can be cared for during this difficult time. Even while we must be socially distant, no one should have to grieve alone.

Complete Article HERE!

End-Of-Life Planning Is A ‘Lifetime Gift’ To Your Loved Ones

By Kavitha Cardoza

Talking about death makes most of us uncomfortable, so we don’t plan for it.

That’s a big mistake, because if you don’t have an end-of-life plan, your state’s laws decide who gets everything you own. A doctor you’ve never met could decide how you spend your last moments, and your loved ones could be saddled with untangling an expensive legal mess after you die.

Betsy Simmons Hannibal, a senior legal editor at legal website Nolo, puts it this way: Planning for the end of life isn’t about you. “You’re never going to really get the benefit of it. So you might as well think about how it’s going to be a lifetime gift that you’re giving now to your parents or your partner or your children. It really is for the people you love.”

Here are some simple, practical steps to planning for the end of life. These tips aren’t meant to be legal or medical advice, but rather a guide to ease you into getting started.

1. Name an executor.

If you’re an adult, you should have a will, says Hannibal. Estate planning is not just for the rich. “It’s not just about the value of what you own. It’s also the feelings that you and your loved ones have about what you own.”

If you own lots of valuable stuff — real estate, trust funds, yachts — you probably need a lawyer. But for most of us, a simple document could do. Your state or county bar associations usually keep a list of lawyers who do this pro bono. Or you could download an online form like Quicken WillMaker & Trust for less than $100. (Full disclosure: Hannibal works for Nolo, which owns Quicken WillMaker & Trust.)

She says the first thing you do is name (in writing) a person whom you trust to take care of everything when you die. In most states that person is called an executor; in some they’re called a personal representative.

Hannibal says it’s a good idea to choose someone from your family. “The most important thing is that you have a good relationship with them — and also that they have a good attention to detail, because it’s a lot of work to be someone’s executor.”

An executor would have to, for example, find all your financial assets and communicate with everyone you’ve named in your will. It’s a big ask, so Hannibal says just be upfront. She suggests asking the person directly, “Would you be comfortable wrapping up my estate when I die?”

2. Take an inventory.

List everything you own, not just things that are financially valuable — such as your bank accounts, retirement savings or car — but also those things that have sentimental value: a music or book collection, jewelry, furniture. Then list whom you want to leave what to.

If you have young children, name a guardian for them. Choose carefully, because that person will be responsible for your child’s schooling, health care decisions and value system.

Hannibal says pets are considered property under the law, so she suggests naming a new owner so that the state doesn’t do it for you.

Digital accounts are also part of your property. This includes social media accounts, online photos, everything in, say, your Google Drive or iCloud, online subscriptions, dating site profiles, credit card rewards, a business on Etsy or Amazon. Hannibal suggests keeping a secure list of all those accounts and the login and password details. Let your executor know where the list is.

Just as you write out specific instructions about your physical belongings, be clear about what you’d like to happen with your online information.

She says it’s better not to have a handwritten will, because proving you wrote it will require a handwriting expert. So keep it simple. Just type out your wishes and have two witnesses watch you sign and date it. Then have them do the same. Hannibal says by signing it, “they believe that the person who made the will is of sound mind, and that’s a pretty low bar.”

You don’t need to file your will anywhere; neither do you need to get it notarized for it to be legally binding. And don’t hide it. Hannibal says just tell your executor where you’ve kept a copy.

Remember that your decisions will change over time. So if you have a child, buy a house or fall out with a family member, update your will.

3. Think about health care decisions.

Your will takes care of what happens after you die. An advance directive is a legal document that covers health care and protects your wishes at the end of your life.

There are two parts to an advance directive. The first is giving someone your medical power of attorney so the person can make decisions for you if you can’t. The other part is called a living will. That’s a document where you can put in writing how you should be cared for by health professionals.

Jessica Zitter is an ICU and palliative care physician in Oakland, California. She says that we’ve become experts at keeping people alive but that quality of life can be forgotten.

She has seen thousands of situations of loved ones making difficult and emotional decisions around a hospital bed. It’s worse when family members disagree about a course of action.

You know the saying “The best time to plant a tree was 20 years ago. The second best time is now”? Zitter says with the coronavirus in the news every day, more people are realizing that these end-of-life conversations are important. “That tree was always important to plant. But now we really have a reason to really, really plant it. … That time is now.”

You may have heard of Five Wishes, which costs $5 and will walk you through choices, or Our Care Wishes, which is free.

4. Name a medical proxy.

Pallavi Kumar is a medical oncologist and palliative care physician at the University of Pennsylvania. Kumar says the most important medical decision you can make is to choose a person who can legally make health care decisions for you if you can’t. This person is sometimes called a medical proxy or a health care agent. Naming the person is the first part of the advance directive.

“Think about the person in your life who understands you, your goals, your values, your priorities and then is able to set aside their own wishes and be a voice for you,” she says. You want someone you trust who can handle stress, in case your loved ones disagree on what to do.

5. Fill out a living will.

After you’ve chosen your medical proxy (and named a backup), you need to think about what kind of care you want to receive. There’s no right or wrong; it’s very personal. The document that helps you do that is called a living will. It’s part two of the advance directive.

A living will addresses questions such as “Would you want pain medication?”; “Do you want to be resuscitated?”; and “Would you be OK being hooked up to a ventilator?”

Kumar says she asks her patients what’s important to them and what their goals are. For some with young children, it means trying every treatment possible for as long as possible, no matter how grueling.

“They would say, ‘If you’re telling me that a chemotherapy could give me another month, I want that month. Because that’s another month I have with my 6-year-old.’ ”

Other patients might want the exact opposite. “They would say, ‘I’ve gone through a lot of treatments and I … feel I’m not having as many good days with my kids. So if the disease gets worse, I want to spend that time at home.’ ”

Kumar says even among patients who are very sick with cancer, fewer than half have had conversations about how they want to die. So talk about your wishes. Once you’ve filled out the advance directive forms, share your decisions with your medical proxy, your loved ones and your doctor.

6. Don’t forget the emotional and spiritual aspects of death.

How you want to die is personal and about much more than just the medical aspect. For some, it’s about being at peace with God; for others, it’s being kept clean. Still others don’t want to be left alone, or they want their pets close by.

Angel Grant and Michael Hebb founded the project Death Over Dinner to make it easier for people to talk about different aspects of death as they eat. “The dinner table is a very forgiving place for conversation. You’re breaking bread together. And there’s this warmth and connection,” says Grant.

Some of the emotional and spiritual questions people talk about are “You were just in a big quake and death is imminent. What are you concerned about not having done?”; “What do you want to be remembered for?”; and “If you could have any musician play at your funeral, who would it be?”

Grant says reflecting on death automatically forces you to think about your life. “That’s the magic of it,” she says.

“We think it’s going to be morbid and heavy. But what these conversations do is they narrow down our understanding of what matters most to us in this life, which then gives us actionable steps to go forward living.”

Grant doesn’t believe a “good death” is an oxymoron. “A good death is subjective, but there are some things that I have heard over and over again for many years at death dinners. … A good death is being surrounded by love, knowing you have no emotional or spiritual unfinished business.”

Complete Article HERE!

When a Grandchild Asks, ‘Are You Going to Die?’

With the coronavirus largely affecting people who are grandparent-aged, it’s a good time to talk with children about death.

By

My granddaughter was a few months past 3 years old when she first asked the question, as we sat on the floor playing with blocks.

“Bubbe, are you going to die?”

Nobody is as blunt as a toddler. “Yes, I am going to die one day,” I said, trying to remain matter-of-fact. “But probably not for a very long time, years and years.”

A pardonable exaggeration. Bubbe (Yiddish for grandmother) was 70, but to a kid for whom 20 minutes seemed an eternity, I most likely did have a lengthy life expectancy.

My granddaughter, Bartola (a family nickname, a nod to the former Mets pitcher Bartolo Colon), was beginning to talk about the deceased ladybug she found at preschool. Make-believe games sometimes now featured a death, though a reversible one: If an imagined giant gobbled up a fleeing stuffed panda, he would just spit it out again.

So I wasn’t shocked by what a psychologist would call a developmentally appropriate question. I did mention our conversation to her parents, to be sure they agreed with the way I handled it.

Such questions resurfaced from time to time, even before something she knows as “the virus” closed her school and padlocked the local playground. Though her parents talk about hand-washing and masks in terms of keeping people safe, not preventing death, even preschoolers can pick up on the dread and disruption around them.

Long before the pandemic, it occurred to me that grandparents can play a role in shaping their beloveds’ understanding of death. The first death a child experiences may be a hamster’s, but the first human death is likely to be a grandparent’s.

With tens of thousands of young Americans now experiencing that loss — most coronavirus fatalities occur in people who are grandparent-aged — it makes sense to talk with them about a subject that’s both universal and, in our culture, largely avoided.

Parents will shoulder most of that responsibility, but “grandparents have lived a long time,” said Kia Ferrer, a certified grief counselor in Chicago and a doctoral fellow at the Erikson Institute in Chicago, a graduate school in child development. “They’ve been through historical periods. They’ve lost friends.” We’re well positioned to join this conversation.

But that requires setting aside our own discomfort with the topic when talking to children. “It’s symptomatic of our society that we get nervous about what we tell them and how we’ll react,” said Susan Bluck, a developmental psychologist at the University of Florida who teaches courses on death and dying.

“But if they’re asking questions, they want to know,” she added. If we shy away, thinking a 4-year-old can’t handle the subject, “the child is learning that it’s a bad thing to ask about.”

We want kids to understand three somewhat abstract concepts, Dr. Bluck explained: that death is irreversible, that it renders living things nonfunctional, that it is universal.

We don’t need to prepare a lecture. “Only answer what they’re asking and then shut up,” advised Donna Schuurman, former executive director of The Dougy Center in Portland, Ore., which works with grieving children. “Listen for what they’re thinking. Let them digest it. The next response might be, ‘OK, let’s go play.’”

What and how much our beloveds understand depends on their ages and development, of course. Kids Bartola’s age will have trouble grasping ideas like finality.

They also tend to be awfully literal: My daughter, who knew better but spoke in the moment, once explained the Jewish custom of sitting shiva by saying that the family was going to keep their sad friend company because she had lost her father. “She lost him?” Bartola said wonderingly. “Did he blow away?” Oops, take two.

But 5- to 7-year-olds can think more abstractly. “That’s when they start understanding the cycle of life and the universality of death,” Ms. Ferrer said. And kids 8 to 12 “have an adultlike understanding,” she said, and may want to know about specifics like morgues and funeral rites.

What each age requires of us, experts say, is honesty. Euphemisms about grandpa taking a long trip, being asleep or going to a better place, create confusion. If someone died of illness, Ms. Schuurman advises naming it — “she got a sickness called kidney failure” — because kids get sick too, and we don’t want them thinking every ailment could be fatal.

Ms. Ferrer talks about a loved one’s body not working anymore, and medicine not being able to fix it. Even kindergartners know about toys that no longer work and can’t be repaired.

Nature can be helpful here. On walks, I’ve started pointing out to Bartola the flowers that bloom and then die, the leaves changing color and falling. A lifeless bird in the driveway presents an opportunity to talk about how it can’t sing or fly anymore.

Ms. Schuurman endorses small ceremonies for dead creatures. Wrap the bug or bird in a handkerchief or put it in a box; say a few words and bury it. “Let’s honor this little life,” she said. “It sets an example of reverence for life.”

Psychologists favor allowing children to attend the funerals of beloved humans, too, with proper preparation. In some families, religious beliefs will inform the way adults answer children’s questions.

The professionals I spoke with suggested some material to help grandparents with this delicate task. Ms. Ferrer is a fan of Mr. Rogers’s 1970 episode on the death of a goldfish and the 1983 “Sesame Street” episode in which Big Bird comes to understand that Mr. Hooper isn’t ever coming back.

Complete Article HERE!

Website that helps you plan for death finds success with millennials

By Rebecca Ruiz

Liz Eddy has lost track of how many times she’s told the story that led her to co-found Lantern, a website that helps people tackle the complex logistics of losing someone they love and also plan for their own deaths.

That story starts with a phone call on a Saturday morning from a nursing home with news that Eddy’s grandmother had died. Two police officers and a nurse greeted Eddy in the room where her grandmother’s body lay.

“They looked at me and said, ‘What do you want to do?'” recalls Eddy, who was 27 at the time. “I had no idea what to turn to … and really was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

“I was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

Eddy, who lost her father as a child, anticipated this moment. Her grandmother, who was frail, had done some pre-planning. She’d written a will, completed an advanced directive for her medical care, and told Eddy where she kept important paperwork and belongings.

But Eddy quickly learned that there’d been oversights, including how she might close certain accounts, stop auto-refill prescriptions, and find online passwords. Eddy figured she’d rely on a comprehensive online resource that could walk her through what to do but found none. Instead, she embarked on a “scavenger hunt of websites” for answers.

“I fully expected to find something like Lantern,” she says.

In the midst of coping with her grief and trying to settle her grandmother’s affairs, Eddy walked in the door of her best friend Alyssa Ruderman’s home, and said, “We’ve got to do something about death.”

The pair launched Lantern last fall with $890,000 in pre-seed funding. The website offers free checklists for users who need to plan a funeral, help dealing with logistics that follow a funeral, or assistance sorting out their last wishes in advance of their own death. The site has thousands of users, and to Eddy’s surprise, 40 percent of them are 35 and younger.

Lantern’s appeal to millennials speaks to a number of trends. They may help older parents plan for what happens when they die and then decide to make similar arrangements for themselves. Accustomed to having everything in their lives optimized or organized by a digital tool, the 35-and-under crowd may view online end-of-life planning as a helpful service like any other they use.

In general, talking about dying seems less taboo to many millennials. They encounter the “positive death” movement online, which aims to make conversations about death normal and routine. But millennials also live in a world that seems beset by crisis, whether that’s mass shootings, climate change, or coronavirus. Contemplating what the end looks like is part of being alive.

Anita Hannig, an associate professor of anthropology at Brandeis University who studies death and dying, says people — not just millennials — increasingly want to express their unique selves in death as in life.

The challenge is getting people comfortable enough to consider what that looks like. Eddy and Ruderman have designed Lantern to sound like a compassionate friend who knowingly takes your hand. The site isn’t morbid but instead offers practical information about the choices we can make before we die, like hiring a death doula and how to write a will. Users can compare different burial options, learn how to select life insurance, and explore how they want to be remembered online.

“A lot of people still think that if you’re talking about death too much, there’s an eerie way you’re bringing it about,” Hannig says. “In some ways, having a website like this [is] making death so much more manageable so that you can focus on the actual process of death and dying when it happens.”

Viana McFarland, a 25-year-old New Yorker, discovered Lantern after an employer-sponsored financial planning workshop prompted her to think about what might happen to her belongings and modest savings after she died. After searching Reddit and Google for resources, she found Lantern.

“There were small things I didn’t think about,” McFarland says.

That included the specifics of her burial. McFarland learned that she could let her body decompose in a “mushroom suit,” which hastens the breakdown of a corpse using mushroom spores and other microorganisms. She explored how to donate organs and leave money to the ACLU and Planned Parenthood. Most of all, McFarland wanted to spare her loved ones stress, confusion, and conflict. The time she spent on Lantern felt useful and productive.

“I guess younger people, with more resources at our hands, might become informed sooner or in a different way than our parents and grandparents were,” says McFarland.

More than three dozen articles on Lantern offer advice and insight on common questions. Its checklist offers a step-by-step guide to managing your last wishes. Tasks include making a funeral financial plan, safely storing financial information so it can be accessed by a loved one, and writing a last will and testament.

Lantern is also sentimental. The checklist prompts users to reflect on their legacy, asking about the three best decisions they ever made, what advice they’d give to their younger selves, and what they’d want their grandchildren to know about them.

“These questions were really developed because we started to realize that people don’t ask these questions of their loved ones, and it’s often the thing you think about when they’re gone,” says Eddy, who personally longs to know stories from her father’s life.

While it’s crucial to record the practical and sentimental information, Lantern must also deliver on keeping it secure. The site uses encryption and currently doesn’t collect information it doesn’t feel equipped to protect, such as passwords, wills, and Social Security numbers.

Instead, its business model is based on referring users to services that specialize in certain products, and which Eddy and Ruderman have personally vetted. For estate planning, Lantern recommends Legal Zoom. To help loved ones close online accounts, it suggests the password manager 1Password. Lantern can receive a referral fee when its customers sign up for such services. Eddy and Ruderman are also exploring pitching Lantern to organizations, like life insurance companies and hospitals, whose clients need the information the site has to offer. They’re making the same case to human resources departments who could use Lantern as a benefit for employees who, like McFarland, don’t know how to start end-of-life planning.

Though Lantern will probably offer a premium subscription to users in the future, Eddy and Ruderman are adamant that its basic how-to content and checklists will never be paywalled.

“We don’t think people should not have access to this information because they do not have means,” says Eddy. 

The company can take that stand because it’s a public benefit corporation, which means it plans to pursue a mission-driven approach while also seeking a return for investors. 

“Our vision is to be the central resource that any one person uses to navigate their life before and after a death.”

Nancy Lublin, an entrepreneur who is the founder and CEO of Crisis Text Line and the former CEO of DoSomething.org, made an angel investment in Lantern. Lublin knows Eddy and Ruderman from their previous roles at Crisis Text Line and DoSomething.org, respectively.

She said in an email that Lantern is poised to serve a “huge untapped market. Millennials, in particular, are bound to find Lantern appealing.

“How the heck are people going to deal when their parents and grandparents (fyi: enormous boomer generations) pass away?” wrote Lublin, noting that millennials use digital tools to find everything from roommates to lovers to marijuana. Of course they’d want something similar to help them manage death.

Eddy and Ruderman are aiming to become the first thing anyone turns to when it’s time to grieve a loved one or plan for the end of their own life.

“Our vision is — and always will be — to be the central resource that any one person uses to navigate their life before and after a death,” says Ruderman. “That is our North Star.

Eddy is buoyed by the possibility that she’s helping others avoid what she experienced following her grandmother’s death: “You don’t have to be forced to pick the first thing you see on Google,” she says.

Complete Article HERE!

Planning for death during a pandemic

By Dr. Ramy Salah

As a palliative care doctor, it is my job to sit with patients and imagine death, the distant reality that we would rather ignore. After warning a heavy conversation is forthcoming, I ask, “Have you thought about how you would want your care to look like if time were short?” The responses to questions about end-of-life care are as varied as they are familiar. “Keep me comfortable.” “I don’t want to be a burden to my children.” “If I can’t recognize my wife, let me go Doc.” Through statements like these, I learn which treatments are most appropriate for my patients on a personal level. It is my goal, after all, to make sure the care that my patients receive matches the care that they would want.

Palliative care focuses on quality of life for patients dealing with serious illness. Therefore, these conversations have become second nature to me. As precise as a surgeon is with her scalpel, I tactfully employ a combination of words and silence to explore my patients’ thoughts about transitions from health to illness, from home to hospital, from life to death. I temper my approach delicately over several visits — as the maxim reads, “Death, like the sun, cannot be looked at steadily.” This is possible with conditions such as cancer or dementia, where life expectancy can be months or even years. During the time of COVID-19, however, we may not have that sort of time.

In the last month, we have been inundated with medical information — I, for one, have tried to decipher more graphs than I would have cared to in a lifetime. From presidential press conferences to cable news to twitter feeds, we eagerly listen for the evidence to make sense of the pandemic. What are the latest numbers of cases and deaths? Which experimental treatments among the antimalarials, antivirals, antibiotics and antibodies seem promising? What are the ethical considerations on rationing ventilators in a national shortage? I am elated that medical professionals have become the loudest voices in the media, however there hasn’t been encouragement for discussions like the ones I have with my patients.

Advance care planning, or better read as “planning for your care in advance,” is generally thought of as a good idea. Though 82% of people say that documenting their wishes regarding end-of-life care is important, only 27% have completed advance directives. My patients are also reluctant to talk about death, but I have seen how much harder it is to have these discussions when they’re critically ill. I say, “In a health crisis you have to process your emotions before making medical decisions. Or you can make those decisions now before things get too emotional.” Studies show that the latter makes for a much smoother process for the patient, their loved ones and their care teams.

So, where do you start? There are three steps in advance care planning:

1). Reflection: Ask yourself — What makes life worth living? What quality of life would be unacceptable for me? There is no shortage of resources to help begin the process, including PREPARE, Go Wish, and The Conversation Project.

2). Conversation: This is the hardest step in the process, and the most crucial. This exercise is useless if you do not share your values and beliefs with those who will be involved in your care if you get sick. This includes your loved ones and your doctors.

3). Documentation: I urge readers to become familiar with two documents: 1). The Advance Directive (AD); and 2). The Physician Orders for Life-Sustaining Treatment (POLST) form. The AD names a durable power of attorney who will make decisions on your behalf if you are unable. It will also direct those involved in your care how to treat you if time were short. The pink POLST form mainly addresses resuscitation — if you were found pulseless, would you want medical personnel to carry out CPR or allow a natural death? I argue that everyone should have an AD, regardless of age or health status. Everyone with a serious medical condition, especially if they reside in a nursing home, should complete a POLST with their doctor.

In the age of coronavirus, I’m sure you, like me, have vacillated between hope and fear. Maybe you shrugged it off as unfounded mass hysteria one day and envisioned doomsday scenarios the next. Regardless, you must translate your energy into positive action. As grateful as I am to you for staying home, practicing good hand hygiene and donating protective equipment to hospitals, I urge you to begin the tough conversations and advance care planning with your loved ones. After all, it’s always too early until it’s too late.

Complete Article HERE!

Anticipatory Grief Is Real,

And It’s Okay to Feel it During the Coronavirus Crisis

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I keep having nightmares about going to Target. In these dreams, I walk through the aisles of one of my favorite places, enjoying a Saturday shop. Suddenly, as people brush by me or stand close in line, I realize my grave mistake: I’ve ventured out into a pandemic, and I’m surrounded by potentially infected people. Panic sets in. Anger at myself for somehow forgetting this new reality. Then I wake up feeling sad. I know I can’t go to Target, and I miss it. Once I can go back, will I be afraid, like in my dreams?

This is one of many minor things I mourn about our new way of life. As COVID-19 sickens thousands across the country and the world, the future we’ve all depended on is no longer a foregone conclusion, and it’s really, really sad.

Harvard Business Review named grief as the “discomfort” so many of us are experiencing, and that’s exactly true. I’ve cried for days on end, thinking about the things I thought I’d be doing. Worse, I cry when I imagine people in the near future I had neatly mapped out getting snatched away by an unrelenting illness. I grieve for those who are sick and dying, but I also grieve for my loss of autonomy, trips I’ve canceled, lost hours in the sun, and for the ideas I had about my future life that seem less tangible by the day.

I know I’m not alone. College and high school graduations won’t happen this year, leaving young people who are looking forward to a new chapter of their lives floundering. Many will miss out on prom, a pivotal coming-of-age moment for some. The going-away parties, weddings, birthdays — they’re all canceled.

Right now it seems trivial to mourn the absence of your college graduation ceremony or a school dance because of the coronavirus pandemic, particularly as dead bodies overwhelm hospital morgues. It is kind of trivial. And it’s true that it’s better to miss a milestone if it means saving lives.

But as our lives are torn apart, rendered unrecognizable by social isolation and coronavirus cancellations, it’s only human to mourn the life you thought you’d have.

“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday,” David Kessler, grief expert and author, told Harvard Business Review. “Anticipatory grief is also more broadly imagined futures. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. We are grieving on a micro and a macro level.”

It can also feel confusing because grieving a lost shopping trip, or even something bigger like a graduation, feels selfish. How can I feel bad for myself when I still have my life and, so far, my health? Ashley Ertel, LCSW, BCD with Talkspace, says ranking grief isn’t helpful.

“You may even be feeling guilty for being sad about missing out when other people are facing sickness and death,” she tells Teen Vogue. “I hope to encourage you by saying that grief comes in all shapes and sizes, and it is normal to feel all sorts of emotions when your reality does not match up with your expectations. Each of our emotional experiences is valid. We don’t compare our levels of joy, and we need to stay away from comparing our feelings of sadness. Sad is sad.”

Sad is, in fact, sad. Of course, no one would compare the grief of missing prom to that of losing a loved one, or even having and recovering from COVID-19. Everyone knows it’s not the same. Still, we feel sad, especially when the celebrations and rituals that “provide special meaning [in] our lives” are taken away, as Ertel puts it. Rather than push our feelings of grief and sadness away, Ertel recommends we allow ourselves to feel it. Acknowledge and honor your feelings, she says; then try to live in the current moment.

In this moment, I feel sad that I can’t go to my favorite restaurant on Fridays like I normally do. I feel sad that I might have to cancel my bachelorette party. I feel sad that this was supposed to be a happy, busy time in my life and it’s now marked by death and daily feelings of despair.

I also feel sad that people are sick. I worry about myself, my friends, and my family. I feel sad that people are dying, and I feel sad for their families. I feel sad that, when this is all over, we won’t know what’s normal and won’t feel familiar with the world around us. I feel sad that, more than ever, I don’t know what the future holds.

But I also feel excited for the dinner I’ll eat tonight. I feel thankful for my comfortable couch and my two adorable cats. I feel like I should brush my teeth. I feel grateful I have food in my fridge and a secure place to weather this storm. I also occasionally feel thankful for this big slowdown, for the canceled plans and postponed events. The mundane joys and discomforts of life are still here, amid all of this. Now, more than ever, I am reminded that there are things to be hopeful for, like the future trips to Target I know I’ll take. And I have hope that they will be happy, like they were before.

Until then, I think I’ll be sad — and that’s okay.

Complete Article HERE!

We can’t be squeamish about death. We need to confront our worst fears

Patients, their families and their doctors need to be open about the inevitable as the virus sweeps through our population

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As the coronavirus spreads through the population, there is one fact we can all agree on. Whether we like it or not, society’s greatest taboo – death and dying – has been thrust unequivocally centre stage.

How could it not, when government strategy is to allow the virus to infect huge swathes of the country in the hope of building sufficient “herd immunity” to protect from future harm? The virus has killed an estimated 3.4% of those it has infected, according to the World Health Organization, although this figure is expected to decline as the true number of people infected becomes apparent. Herd immunity, according to Downing Street’s chief scientific adviser, requires a minimum infection rate of 60% of the population. Thus we may face a potential early and unexpected death toll of hundreds of thousands of Britons.

There is, therefore, a glaring imperative to confront the topic so many of us long to squirm away from: the inescapable fact of mortality. As a palliative care doctor, I am intimately acquainted with our reluctance to square up to dying, and with the unintended harms of such squeamishness. Advance care planning – the phrase doctors use to describe proactively how much medical intervention you would wish for in extremis – is too frequently neglected, by patients and doctors alike.

Sometimes, for example, if an oncologist is less than candid about a patient’s frailty precluding any further rounds of chemotherapy, a family may be unaware that time is running out. Profound and vital conversations between family members never happen. Final messages hang in the air, forever unsaid.

Suddenly, the patient is comatose and fading. And no one has sought to find out if they would like heroic efforts at prolonging life – or if, perhaps, their final wish is to die at home, neither gowned nor tubed, with no machines and only loved ones at their side.

We are fast approaching a crunch time. NHS intensive care beds will be imminently overwhelmed with patients in dire need of mechanical ventilation. Italy’s experience has shown all too graphically that peak infection rates demand draconian rationing of health resources. In Lombardy, for example, some beleaguered hospitals have been forced to impose bans on ventilators for coronavirus sufferers aged over 60 – this despite knowing that it is predominantly the elderly who will die.

As Britain approaches peak infection, we therefore owe it to each other to start talking now. Would your mother, approaching 80, even wish for an intensive care bed? Do you, her anxious offspring, even feel able to find out? No one can pretend these discussions are easy. Our dearly beloved mums and dads are no less loved for their years; how on earth do we begin to broach the prospect of each other’s deaths?

If there is one thing I have learned from my time in a hospice, it is that these conversations rarely measure up to the degree with which we dread them. Indeed, for some elderly patients – conscious of their frailty – a little candour about the future can bring immense relief. It is fine to stumble, feel awkward, grope your way, get the words out wrong. In the end, all that matters is motive: the sincerity of your fumbled aim to tease out your loved one’s views.

Two medical truths may help you find the strength to talk and listen. First, every medical intervention has cons as well as pros. Even for young and healthy patients, intensive care is a gruelling experience that can leave serious, long-term medical problems. For the elderly, survival is more doubtful, let alone full restoration to good health.

Second, not every problem can be fixed. Sometimes, a disease is so aggressive that intensive care cannot cure, but only harm. When doctors conclude intensive care is not an option, it is not discrimination but a weighing-up of what might work, the sober balancing of benefits and risks.

In the end, an advance care plan need be nothing more technical than a chat over a cuppa. Steel yourself. Find out your loved ones’ wishes and tell them yours at the same time. There is kindness in being informed and prepared.

And – please – know that however besieged the health service becomes, we will never stop caring for every patient. You may be young, you may be old, but we will always do our best. How much you matter to us will never, ever run dry.

Complete Article HERE!