‘A Last Act of Intimate Kindness’

I had barely seen my brother in decades, but when time was short, he let me in.

By Michelle Friedman

The message I had dreaded for years appeared on my phone: “Looking to find the sister of my patient, Jay Friedman.”

My ensuing phone conversation with the doctor brought ominous news. My 65-year-old brother, Jay, had advanced pancreatic cancer. He and I grew up together in Divine Corners, N.Y., a hamlet in the Catskills, raised by secular Holocaust survivor parents who stumbled into raising chickens. Their histories, coupled with the isolation and poverty of the farm, rendered my father brutal, especially to his only son.

I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. Despite working a quarter century in I.T. for the local school system, my brother did not own a cellphone. His doctor found my number via Google.

Jay was admitted to a fancy Seattle hospital where I called him via the landline next to his bed. His voice sounded weak, plaintive.

“Jay, I’ll come,” I said. “Let me be with you.”

“I don’t know,” he said. “My house is a mess.”

“I can stay in a hotel.”

“I’ll let you know.”

I panicked. I knew the prognosis was dire, but my brother’s lonely life cast an even darker shadow.

The hospital discharged Jay with a bag hanging from his chest to drain bile from his tumor-blocked liver. A few days later the doctor called again. Jay wanted my help.

I caught a flight to Seattle, picked up a rental car and drove around Puget Sound to a town in Kitsap County. Before entering Jay’s house, I muttered an ad hoc prayer for strength. Following the sounds of his weak voice through the maze of papers, boxes and computer parts, I found my brother lying on the couch. The disease had consumed him, leaving his body whittled, skeletal. Only Jay’s voice sounded familiar, a gravelly baritone.

“Thank you for coming,” he said. “I’m sorry I was snappy over the phone.”

The blanket wrapping my brother was full of holes. A brown crust covered his kitchen floor and counters. Jay drank tea with lemon in the one glass he possessed. Not owning a kettle, he boiled water in an old pot.

I brewed tea and baked a piece of chicken. After a few sips of liquid and child-size bites of food, Jay felt full. He slowly climbed the stairs to the single bed in his bedroom. The sheets hadn’t been changed in months. All I found in the closet was a cotton duvet cover that I recognized from the farm where we grew up. The faint smell of the detergent and crisp lines from our mother’s iron told me Jay had never used it.

Retreating to a Best Western hotel two miles away gave me guilty relief. It was no palace, but it was clean and orderly.

In the morning, the doctor outlined my brother’s stark medical options. Surgery was out. Jay could pursue radiation or chemotherapy, but neither was likely to yield much in terms of quantity or quality of life.

Jay made his choice in seconds — no aggressive medical intervention. The focus shifted to palliative care at home.

He didn’t have much time, weeks. How was I to start a conversation with him about his death? I knew he took pride in his money management and had saved a lot (though I had no idea then how surprisingly much), so that’s where I started.

“Jay, have you thought about what you want to do with your money?”

“Yes, I’ve thought about this a lot. I want to give it to Planned Parenthood.”

“All of it?”

“Yes.”

His calm answer startled and pleased me. Throughout our decades of sparse contact, Jay stayed vague when it came to his personal opinions.

“Jay, that’s amazing! How did you come to this decision?”

“There are too many people in the world, and I believe that people should have autonomy over their own bodies.”

I sat in silence thinking about my brother’s autonomy, the little boy overwhelmed by our rageful father, the awkward teenager who wanted to join the Navy to get away but lacked nerve. My practical mind kicked in. “Jay, do you know a lawyer?”

Once again, he surprised me. “Yeah. One of the teachers I know went to law school at night. He’s a good guy.”

Jay had no contact information for the lawyer, but I found him through the school. He answered my text within minutes and got to work preparing the necessary papers.

By the next day, Jay could no longer crawl up and down the stairs and spent most of his time in his bedroom. We moved the mattress to the floor in case he rolled off during the night. I pleaded with hospice to fast-track Jay onto their service, and soon a nurse arrived and taught me how to dose the medication: morphine for pain, Haldol for nausea and Lorazepam for anxiety. Each floated in a medicine-dropper-topped bottle so that liquid relief could be applied to the inside of the patient’s cheek.

Jay’s condition deteriorated quickly, and I no longer retreated to the Best Western. My first night in Jay’s house, I slept downstairs on the sofa. The next night, I worried that I wouldn’t hear his whimpers, so I moved to the floor next to his mattress. My younger brother’s vulnerability pierced me; he was the innocent little boy on the farm who trusted me. I cried, silently.

When he no longer ate or drank, I repurposed a medicine dropper to drip orange juice and seltzer onto his parched lips.

The lawyer met privately with Jay and later told me of his firm wish to be cremated.

A clutch grabbed my heart. Jewish law, which I follow, prohibits cremation. “Can I at least get Jay’s ashes so that I can bury them according to our faith?”

“Yes. I think that will be OK.”

“We haven’t talked about this, but I’m wondering if you are part of a religious tradition?”

“I am. The Church of Jesus Christ of Latter-day Saints.”

His answer bolstered me, given what I was about to request.

“Can I ask you one more favor?”

“Sure.”

“When the time comes, I want to do a Jewish ritual washing for Jay. It’s called a tahara. It means purification. I’ll need help; it’s too hard to do alone.”

“Of course. Call me when you need me.”

The days passed in a kind of waking dream. Jay talked on and off, disclosing struggles of all kinds. He liked hearing stories about Divine Corners, how we played in the snow and explored the brook behind the coops. I emptied his drainage bag and changed his adult diapers.

“This is disgusting,” he said.

“I’m fine,” I said. “I’m here for you. There’s nothing else I want to do.”

As our mother did when we had fevers as children, I gave Jay a sponge bath and changed his worn pajamas to a clean set.

Jay quietly slipped away. He told me that his dream was to buy a house on a lake with a few acres of land.

“That’s such a nice idea, Jay,” I said. “I love you.”

“I love you too.”

And then I made a plea I knew people have uttered for millenniums. “Send me a sign, Jay. Please send me a sign from the other side.”

Early Thursday morning I woke up inches from my brother to find him gone. No labored breathing, no death rattle. His skin had cooled, his limbs stiffened.

When the sky was fully lit, I called his friend, and we performed the tahara. We removed Jay’s pajamas, removed the drain and bag, all the while using a clean sheet to keep his frame covered and dignified. I repurposed the battered teapot to pour water over his body, starting with his head and moving to his feet. We toweled him dry, dressed him in long underwear and wrapped him in the duvet cover from our childhood farm. The work felt tender, holy, a last act of intimate kindness.

The mortuary people came and removed Jay’s body. At 6 o’clock I boarded the van for the airport. Only one other person got on, a white-haired woman in a sweater set. I saw that she bid a sorrowful farewell to the man seeing her off. She sat a few rows behind me. Drizzle and traffic caused delays, but our elfin driver navigated the trip and asked us which terminals we needed.

“American,” she said, turning mournfully in my direction. “It’s a sad trip. My brother is dying of brain cancer in Florida.”

“United,” I said, and to her: “I just left after taking care of my brother, who died this morning. I hope you get there in time.”

We reached across the aisle and held hands. Jay had made good on his sign.

Complete Article HERE!

Honoring The Wishes of Those Who Didn’t Want a Funeral

Loved ones who are grieving may ultimately make different decisions

If someone doesn’t want to have a funeral or memorial, they should still take into account the feelings and grief of those left behind

By Marijke Vroomen Durning

Funerals, shivas, memorials and other rites that mark a death are a fact of life. They bring together people to mark the deceased’s life and passing, while providing comfort, support and a sense of community. But more and more, people are opting not to have a traditional service or rite, choosing something different or even nothing at all. Those left behind after a death may have strong feelings about those wishes, especially if the instructions run counter to their own ideas and beliefs.

“I think it’s important to honor the person who has died and their wishes,” said Candi Cann, an associate professor of religion at Baylor University in Waco, Texas. “But I also think it’s important to honor the needs of the person who is left behind, and sometimes those [wishes and needs] don’t always match up.”

“Everybody has different ways they want to remember the people they love.”

The important thing is those who are left behind get the support they need, so there must be a conversation that lays this all out before someone dies, she said.

Talking about death and dying in the past was natural because it was so common, even among children. This changed as medicine began to improve in the 1900s and death became a more sensitive topic as doctors did everything they could to keep their patients alive. Death was considered a failure and it became a subject that wasn’t openly discussed among family and friends. But we need to start talking about it again so everyone is on the same page, without assumptions and, hopefully, without bad feelings, Cann added.

No Funeral Please

Kelly Erb, a lawyer in Pennsylvania, has had this conversation with her husband and children more than once. Being part of a large family exposed Erb to death from a young age.

“I grew up in the rural south and it’s very community-oriented, and also very community-oriented around churches,” she explained. “So if someone in the church were to die, for example, it was expected that you would go to the funeral.”

One of Erb’s first funerals was for a girl who was about 14 years old when she died in a car accident and it left a strong impression because the girl in the open casket didn’t look at all like the girl Erb knew when she was alive.

Later, Erb began her career as an estate attorney, advising clients on end-of-life issues. These personal and professional experiences all had an impact on her. She decided that she would not have a funeral. A party is fine, she said, but not a funeral.

“I’ve joked about that with my kids. I want them to play ‘My Way,’ and it has to be the Elvis version,” she said. “We’re usually talking about death in that way. I feel like so many times, with respect to these services, we have one idea of what should happen. And everybody grieves differently. Everybody has different ways they want to remember the people they love. I wouldn’t want anybody to tell [my kids] how they have to remember me or how they have to mourn me. And if that is them sitting around and watching a movie that I really, really liked, they can do that.”

Honoring a Loved One’s Wishes

Laurie (a pseudonym) lost her husband unexpectedly earlier this year. He didn’t want a funeral either. So when he died, Laurie felt she needed to respect his wishes but she admitted this left her feeling isolated as she mourned. Laurie said that had she done the traditional Jewish funeral and shiva, a period of seven days when people visit, bring food, and provide support, she may not have felt so alone. But she did manage to find support in other ways.

Complete Article HERE!

Don’t Forget the Death Workers

Hayley Campbell on the hidden labor after life

The Repentant Magdalen (c. 1635/1640) by Georges de La Tour

By Stephanie Bastek

Anglo-American attitudes toward burial have changed significantly over the past half century: today, most people choose to be cremated, and alternatives like natural burials and human composting are on the rise. Margareta Magnusson’s The Gentle Art of Swedish Death Cleaning, about the importance of getting your affairs in order, was a surprise bestseller, and American mortician Caitlin Doughty is but one of several popular YouTube personalities who speak about death. But largely absent from the conversations at so-called Death Cafes (coffee, crumpets, and the inevitable!) is any discussion of the people who devote their lives to caring for the dead. These death workers are the focus of Hayley Campbell’s new book, All the Living and the Dead. Campbell speaks to people doing jobs we tend not to consider: embalmers and executioners, of course, but also crime scene cleaners, mass fatality investigators, bereavement midwives, and others. What makes these people choose to surround themselves with death tells us a lot about what the rest of us lose when we relegate death to the shadows.

Complete Article HERE!

How To Talk About Grief

— According To Women Who’ve Made It Their Jobs

You’re not alone.

by Natalia Lusinski

Grief is something that is an unfortunate harsh reality for many (nay, most) at some point in life. And everyone processes said grieving differently; one person may bottle up their feelings, others may seek out a support system. Even mainstream media is starting to showcase the topic more. Shows like After Life, The Kominsky Method, Somebody Somewhere, and Sorry For Your Loss all have characters who are grieving. And, offscreen, if you are mourning the death of a loved one, you can join communities like Death Cafe, wherein you meet up. with someone in person — not only to discuss death, but also eat and socialize. And some people, like the women featured below, are even making it their life’s mission to encourage conversations and dialogue around grief.

The way people commemorate their late loved ones also varies — one person may have part of their home dedicated to the deceased as a shrine while another may celebrate their loved one’s birthday and special occasions. Some people even get tattoos wherein the deceased’s ashes are mixed in with the ink so they will always have the person close — literally.

In fact, Tattoo Artist Stenvik Mostrom tells TZR he has done several tattoos that have included the ashes of loved ones that have passed. “Only a very small amount of ashes is needed to add to the inkwell before tattooing begins,” he says. “Typically, the imagery is something that also reminds that person of the loved one that the tattoo is dedicated to. I feel that it is a great way to deal with the loss, by actually carrying a part of that person with you always, however trace amount it may be.” (Although you can check out his work on Instagram, he says he does not typically post these tattoos due to their personal nature.)

Like Mostrom, the women below are also investing time, energy, and resources to the topic of grief, too.

Shelby Forsythia: Intuitive Grief Guide

“I devoured grief books after my mom died and began posting what I learned on Facebook,” says Shelby Forsythia, intuitive grief guide, podcast host, and author of Your Grief, Your Way, to TZR in an email. “Posts led to live videos. Live videos led to a podcast. A podcast led to my first book, and now, in the six years since I started reading about loss, I’ve hosted three podcasts and published two books — with a third on the way.”

Forsythia says she feels driven to deeply understand grief and loss — and then transmits what she’s learning to wider and wider circles. “With each new resource — and each new wisdom-keeper I find — I get to go ‘back down the well,’ so to speak, and emerge with new, interesting water to drink and add to my own bucket of wisdom,” she says. “I never stop thinking about how everything we do is connected to the deaths of people who’ve gone before — and how we’ll eventually die, too.”

As far as the grieving process goes, Forsythia says keeping pain locked away inside can be detrimental to mental, as well as physical, health. “Books like The Body Keeps the Score demonstrate how being unable to express, or process, grief can lead to anxiety, depression, substance use, PTSD, withdrawal from life, and even suicidal ideation,” she says. “Grief is a very isolating experience and it’s made even more isolating when we insist it stays trapped within us. Personally, I found an immense amount of relief and release by screaming.” After her mother’s death, in the evenings, Forsythia would climb into the passenger seat of her dad’s pickup truck and belt out her feelings, she explains, hammering on the dashboard and the seat. “I felt so much anger and agony in my mom’s dying that it was the best, and most intuitive, way I could think of to let it out.”

And while screaming into the abyss is certainly an effective coping method, she also encourages grievers to join a community of some sort. “I personally leaned on a group called The Dinner Party, an organization that coordinates meet-ups for people who lost a loved one in their 20s, 30s, and early 40s,” she says. “There’s definitely a misconception that it’s possible to ‘get over’ grief. The death of someone significant isn’t something you ‘get over’ — like you would a cold. It’s an experience that becomes a part of you.”

Rebecca Soffer: Co-Founder & CEO Of Modern Loss

When Rebecca Soffer was in her early 30s, she lost both of her parents a few years apart. Together with her friend, Gabrielle Birkner, who was also grieving the death of her parents, the two women formed a monthly dinner party called WWDP (Women With Dead Parents), the theme being, “I get it.” That led them to eventually form Modern Loss, an online community that hosts other events, too, such as storytelling sessions. “I got really tired of feeling so lonely in my grief — and I wanted a place to go full of storytelling instead of clinical advice, with stories of resilience and feeling like I was being seen,” Soffer tells TZR. The community only continues to grow — and is coming up on its 10-year anniversary.

Soffer’s latest book, The Modern Loss Handbook: An Interactive Guide to Moving Through Grief and Building Your Resilience, just came out, too, in May 2022. She notes that grief is a nonlinear experience — and what works for one person may not work for another. “There is no ‘right’ way to grieve,” she says. “See what works and what doesn’t — and what didn’t work now might work later on.” With a fresh loss, for instance, Soffer suggests focusing on micro-steps. “It’s easy to be overwhelmed in the early stages, so figure out what you need in any given moment, not forever,” she says. “Ask yourself, ‘How am I going to get through today, the next hour?’”

She also suggests having daily check-ins with yourself and assessing what you need — this could be a lighter work schedule, taking some time off, or getting help around the house. “I don’t think grief is something you ‘get over’ — it’s something you ‘move through,” Soffer says. “Now, you need to navigate life without this relationship that had been really impactful in your life. Grief’s like living with a companion. It ebbs and flows, but there is no timeline.”

Marisa Lee: Author Of The Bestseller, Grief Is Love

“I’m 14 years out from my mom’s death, and at this point, I’m pretty confident that grief is something that you just have to live with for the rest of your life,” Marisa Renee Lee, author of the bestseller Grief Is Love, tells TZR. “And so, for me, it’s not about redefining grief as something that just happens in one moment of time right after someone dies — but as the repeated experience of learning to live in the midst of your significant loss. This has made it easier for me to live with it.”

She adds that talking about grief really does help to normalize it. To that end, she says one of the pieces of research that she highlighted in her book is focused on the idea that the only thing that makes more challenging emotions — like anger and sadness — easier to bear is acknowledging them. “The second you say either out loud to yourself, or to someone else, or write what you’re feeling and kind of give voice to it … it’s the only thing that reduces the feelings’ power over us. Naming them, and acknowledging them, is what makes it easier to deal with them.”

So, when grieving, Lee says the first step is giving yourself permission to grieve. “I found that in our society, in our culture, people don’t want to give you permission to be sad, but it’s a normal part of life,” she says. “So if your friend is struggling, I would just encourage you to encourage them to be sad or angry or whatever it is they’re feeling, to really be okay with it.” Because when people add judgment on top of grief, it becomes even harder for the person who’s grieving. “And what you want more than anything else is for this person to be able to learn how to live with the loss,” she continues. “By creating space and places where people feel like they have the permission to grieve — to be sad, to be frustrated, angry, disappointed, what have you — we then create more opportunities for people to heal.”

Theresa A. Shubeck: CEO Of Good Grief

“Good Grief helps children and families navigate their grief, and develop a sense of hopefulness for the future,” Theresa A. Shubeck, CEO of Good Grief, tells TZR in an email. The organization’s mission is to help people become more resilient and grow from their loss. While there are many grief groups out there tailored for adults, there are not as many for children. Shubeck says this is an important distinction, because the way children cope varies from the way adults do. “Generally, younger groups spend more time expressing themselves through activities and play, while older groups engage in conversations,” she explains. Good Grief’s volunteers help steer the play and conversations.

Before becoming Good Grief’s CEO, Shubeck says she found its mission incredibly compelling — and also had personal reasons for wanting to become involved. “I came to it from a personal perspective of awareness of effective grief support that I received following my mother’s brief illness and death,” she says.

Acknowledging the painful and complex emotions someone is experiencing is an important step to coping with grief and sadness in a healthy way, she explains. “Support is crucial to helping people navigate their grief,” she says. “For children, we see that unresolved grief can lead to anxiety, depression, bullying, eating disorders, and poor school performance. Family, friends, your house of worship, or grief support organizations (like Good Grief) can provide a safe space to share and express feelings, where grief and loss are normalized. The grief experience is not a linear one — and it is also different for everyone.”

As far as creating grief rituals to remember your loved one, she says some simple ways to do this include writing to the person you lost, keeping photos around, talking about them with people who knew them (or perhaps never got to know them), creating new rituals at holidays or other important life events, making a scrapbook to share with friends or family, and wearing a special piece of jewelry or article of clothing that reminds you of them.

Dr. Candi Cann: Death Scholar & Advocate Of Eterneva

If you’re looking for a sparkling way to remember a lost loved one, Eterneva creates lab-grown diamonds made from human ashes or hair. Dr. Candi Cann, a death scholar and Baylor University professor, tells TZR her department partnered with Eterneva in a research study. The aim was to examine the grief journey, and whether or not cremation diamonds helped customers in their journey. “Eterneva is built on the belief that when a loved one is lost, we should not have to ‘move on’ — we should be able to ‘move forward’ with them,” Cann says. “By reframing the grief experience, Eterneva honors our loved ones and pets, ensuring their stories live on in a beautiful and remarkable diamond.”

Among the customers they spoke to, Cann says they found that many people appreciated Eterneva’s support network, as they were able to talk about their losses with others. “We also discovered that many customers found making diamonds out of cremains allowed them to carry the deceased in a way that was both palatable and portable — and, more socially acceptable in ways that cremains would not be.”

Cann says that when someone dies, we don’t just lose the person, but we lose the way the world looked around them — the future plans, the daily habits, the shared memories. “One’s identity can be changed overnight as a result,” she says. “The most important thing is to live in the present moment, one day at a time. It sounds cliché, but it’s true.” She also thinks that continuing bonds with the dead can really help people, whatever that might look like. “My great uncle put together a family cookbook of all of the family recipes with photos after my great grandmother (his mother) died, and sent everyone in the family a bound copy,” she says. “I love that little cookbook. It was his way of honoring her memory and legacy, and the fact that it was huge family meals that always brought us together.”

Complete Article HERE!

How Does A Living Will Work?

By Deb Hipp

During a medical crisis, loved ones must often make decisions quickly on whether to withhold or provide life-sustaining treatments. An element of advance care planning, a living will is a legal document that provides specific instructions on how to carry out your wishes to receive or decline such treatments when you otherwise can’t communicate those wishes yourself.

You may already have a durable power of attorney for health care—a legal document that allows your designated agent or proxy to make medical decisions for you if you become incapacitated. Unlike that document, however, instructions in a living will can be used only when the person named in the living will has no hope of recovery or cure.

Adding a living will to your estate plan can mean the difference between your loved ones living with doubts later or knowing they made the right decision for you when you were unable to make end-of-life medical decisions for yourself.

What Is a Living Will?

A living will is a legal document expressing your wishes on receiving or declining medical care or life-sustaining treatments should you become terminally ill or injured and unable to communicate those decisions for yourself. Each state has its own laws on living wills, including definitions of life-sustaining treatments, restrictions and instructions that can be included in a living will.

The person named in the living will is known as the “principal” or “declarant.” However, terminology may differ depending on state laws. The person designated to carry out the wishes of the principal on the living will may be called the attorney-in-fact, health care proxy or another name depending on the state.

“The living will confers limited authority of the attorney-in-fact on behalf of the principal who is no longer able to communicate their preferences to withhold or withdraw artificial means of life support or life-sustaining treatments,” says Jane Fearn-Zimmer, an elder law and estate planning attorney and partner at Archer Brogan LLP in Cherry Hill, New Jersey.

What to Include in a Living Will

A living will should include your wishes for receiving or going without treatment when your condition isn’t expected to improve and treatment would extend your life for only a limited time.

“The living will is intended to apply only in very limited situations where the principal who signed the document has an incurable or irreversible medical condition or conditions that will probably result in the principal’s death within a short period of time—typically six months or less,” says Fearn-Zimmer.

Life-sustaining treatments addressed in a living will may include:

  • Heart-lung machines
  • Mechanical ventilators
  • Artificial nutrition (via feeding tube)
  • Artificial hydration (via feeding tube or IV)
  • Cardio-pulmonary resuscitation (CPR) or other extraordinary measures
  • Dialysis

“Living wills can [also] address issues like pain management and palliative care,” says Candace Dellacona, an estate planning attorney at Offit Kurman, Attorneys at Law, in New York City. “I even include provisions like ‘I would prefer to die at home’ in a living will.”

“You want to provide as much information as you can to make sure that your proxy isn’t making the decision for you, [but] rather your wishes and words are moving through your proxy,” she says. “The more information you can provide in your living will to your proxy to illustrate for them the type of care that you’d want to receive or decline, the better.”

Living Will vs. Advance Directive: What’s the Difference?

“In New York, an advance directive is a category of documents that includes a power of attorney for financial decisions, a health care proxy and a living will,” says Dellacona.

The purpose of an advance health directive is to make sure your wishes for medical treatment and/or life-sustaining treatments are documented and carried out if you become incapacitated and unable to communicate those decisions for yourself. Depending on the state, definitions of documents known as advance directives may have some overlap.

“A living will is a subset of advance medical directive,” says Fearn-Zimmer. “It’s a legal document with the limited purpose of enabling the person who executes the document to control their end-of-life medical care. It helps avoid a tragic and frustrating situation by allowing the person who executes the document to choose ahead of time whether they want to be kept alive by means of medical treatments and technologies like a feeding tube or a ventilator.”

A living will is typically utilized in the event of:

  • Physical incapacity due to a terminal illness or injury
  • Mental incapacity due to Alzheimer’s disease or another form of dementia
  • Loss of consciousness

With an advance medical directive, such as a living will or a power of attorney for health care, the principal executing the document may consent to receiving all means necessary to remain alive, including artificial medical treatments like hydration, feeding and respiration using a tracheotomy and a respirator or ventilator, says Fearn-Zimmer.

Alternatively, the document may instruct the attorney-in-fact to decline consent to surgery or artificial and other medical treatments.

Living Will vs. Medical Power of Attorney: What’s the Difference?

Like a living will, the durable power of attorney for health care may also list measures for end-of-life treatments or instructions to withhold certain types of treatments. However, there are important differences between these two estate planning documents.

“The health care proxy names the person to make the decisions, and it often includes a Health Insurance Portability and Accountability Act (HIPAA) waiver,” says Dellacona. “The living will describes the type of care that the person may wish to have or avoid.”

“In New York and in many states, a living will and health care proxy are separate documents. Some states combine them into one advance health care directive, sometimes referred to as a medical power of attorney,” says Dellacona. New York refers to a medical power of attorney as a health care proxy.

The durable power of attorney for health care allows the health care proxy you’ve appointed to carry out your wishes for medical care should you become incapacitated and unable to communicate medical decisions for yourself. The health care proxy’s duties may include consenting to or declining treatments that could possibly lead to your recovery.

In addition to that power, the health care proxy named in the health care proxy document is also allowed to carry out the wishes outlined in your living will for receiving or declining life-sustaining treatments.

“Living wills can be a helpful document for the person you named as your health care proxy to read so that they understand your wishes, especially in a time of crisis,” says Dellacona.

Living Will vs. Last Will and Testament: What’s the Difference?

A living will and a last will and testament may sound similar, but these legal documents serve entirely different purposes. Like their names imply, both serve to carry out the “will” or wishes of the principal. However, that’s where the similarities end.

A living will comes into play while the principal is still alive but incapacitated and unable to communicate decisions about receiving or withholding life-sustaining treatments.

On the other hand, a last will and testament takes effect upon the principal’s death. The last will and testament instructs the executor of the principal’s estate on distribution of certain property and assets.

Why Living Wills Are So Important

In a medical crisis where there’s no hope for recovery or another end-of-life situation, a living will can ease the intense pressure placed on the principal’s health care proxy to make decisions in accord with their wishes.

“The living will can make it easier for the proxy to understand what those wishes are and advocate for you if you can no longer advocate for yourself,” says Dellacona “[The living will] is also helpful if the proxy is facing pressure from other family members or others who may think you have a different view of care.”

Living wills also provide clear instructions to emergency medical staff.

“In an emergency life-or-death situation, every minute counts,” says Fearn-Zimmer. “The emergency medical team needs to know instantly whether to act in an emergency situation. The living will is short and sweet—maybe only one or two pages—and tells them what they need to know and who will give the authorization quickly in an emergency situation.”

Studies show both health care providers and family members experience increased anxiety and stress after making these decisions for their patients and loved ones. The presence of a living will can help provide them not only a sense of direction, but also welcomed relief.

How to Write a Living Will

An estate planning or elder law attorney can prepare a living will according to your instructions. Alternatively, you can use software purchased from legal document websites or certain state bar associations to prepare the living will yourself. Hiring an attorney to prepare your living will ensures the document complies with your state’s laws.

Many (but not all) states require two witnesses and notarization of your signature to execute the living will. You can revoke or revise a living will at any time.

To get a general idea of your state’s laws for living wills, you can look up state requirements at FindLaw. Make sure to double-check state statutes yourself on your state legislature’s website for accuracy.

The URL for the official website for your state legislature ends in “.gov.” If you’re preparing your own living will, make sure it meets the requirements listed on the official state website.

Lastly, remember a person’s wishes and values often change over time, particularly as illness arises and advances and one approaches their end-of-life journey. Therefore, a living will shouldn’t be a static document, but rather one that’s readdressed every few years to ensure it reflects a person’s current care preferences.

Complete Article HERE!

Why End-of-Life Conversations Can Be Difficult for Sexual and Gender Minority Patients

Carey Candrian, PhD, helped lead a study to understand how fear and discrimination affects advance care planning.

by Greg Glasgow

Advance care planning — thinking about what kind of care you want and whom you want by your side at the end of your life — can be difficult under any circumstances. But for sexual and gender minority (SGM) patients — including individuals who identify as lesbian, gay, bisexual, asexual, transgender, queer, or intersex — those conversations are often made even more difficult due to stigma, fear, and discrimination.

Carey Candrian, PhD, associate professor of internal medicine at the University of Colorado School of Medicine, is senior author on new research, published in JAMA Network Open, that finds that SGM patients’ experiences of discrimination affect their selection of clinicians and cause concern about whether their end-of-life preferences will be honored.

Candrian and her fellow researchers collected survey data from SGM and non-SGM participants and conducted qualitative telephone interviews with SGM participants across the country, asking them about their end-of-life discussions with clinicians.

“These conversations are hard for everyone, because you’re talking about things like death and dying and serious illness and diagnosis,” Candrian says. “When you add in all these other factors that we know exist for SGM people — less likely to have a traditional family, more likely to have experiences with discrimination or mistrust in the health care system — it makes those conversations even harder. We’re really trying to really understand what is happening and how these conversations impact it.”

Fears of disclosure

Advance care planning discussions can happen at any stage in a patient’s medical journey, not just when they are diagnosed with a serious illness. Doctors may ask the patient’s preferences on care measures such as ventilators, CPR, and artificial feeding, and whom the patient wants to speak or make decisions for them if they are unable to speak for themselves. Those conversations are often difficult for SGM patients who are not in heteronormative, legally recognized relationships or who have not disclosed their sexual or gender preferences to their parents or siblings.

“It can be a double bind — they don’t feel comfortable in the health care system, and they also are not comfortable disclosing it to their family,” Candrian says. “The big tension that we found is, ‘How can I actually have a meaningful conversation if I am so worried about disclosing this core part of myself in terms of who I am, who I need by my side, and what I want?’ How can you ensure they’re getting the care that they need if they can’t disclose this critical information?”

Part of that worry for SGM patients is making such a disclosure part of their medical record, where it can be seen by other doctors if the patient has an accident or needs emergency care out of state. Many survey respondents had experienced discrimination based on their gender or sexual identity in other aspects of health care and were reluctant to share that information in care planning discussions.

Critical conversations

The paper notes that “more SGM-specific patient-centered care might better support these discussions within the health care system,” and that clinician sensitivity training may also help as well. Other paths to more constructive conversations could include indicating support for SGM patients — through a rainbow flag or other means — and changing standard questions from, for example, “Are you married? Do you have kids?” to “Do you have a partner? Do you live with anyone?”

“Several participants had really great ideas on how to improve these processes in terms of how to find forms and how to make them more accessible for people who don’t fit the standard checkboxes,” Candrian says. “We need to collect this information in a way that doesn’t perpetuate discrimination, but actually opens the door to having a really critical conversation with SGM people.”

The study data were collected between October 2020 and March 2021, and the authors note that in the wake of the Supreme Court’s decision that overturned Roe v. Wade and concerns about the future of the legal status of same-sex marriage in the U.S., the fears and concerns expressed by SGM participants about advance care planning may be more pronounced now and in the future.

“Now, perhaps more than ever, we need to bring more voices into the conversation around advance care planning than have been included before,” says lead and corresponding author Amanda Reich, PhD, MPH, an investigator at the Center for Surgery and Public Health at Brigham and Women’s Hospital in Massachusetts. “Clinicians have the opportunity to re-open how we talk about end-of-life care to be more inclusive and to understand why our patients may be fearful or hesitant to have these critical and deeply personal conversations.”

Complete Article HERE!

Ask Me About Death and Dying

— On the Work of Palliative Care

Anna DeForest Wrestles With the Calculus of Whether a Life Is Worth Living

By Anna DeForestIt has never been obvious to me that life is worth living. Throughout my medical training, where we have ample exposure to the tools of psychiatry, the taxonomy, I have considered that this disposition may be an illness, a disorder of mood or personality, or a maladaptation secondary to the traumas of my upbringing. But try as I might I cannot seem to be otherwise.

For almost a decade now my life has been in medical training, which is schooling that is also labor, for five years paid but the first four I paid for, and part of what they train us to do at these elite institutions is to be leaders in whatever fields we go into. We are made to practice giving academic talks, and whenever it is my turn, almost without meaning to I start talking about Rene Descartes, about thinking in relationship to being, about how wrong he was and how fucked up the world got, or I’ll talk about neuroscience and free will and confabulation, and I wonder if people with psychiatric illness feel the way I feel when I give these talks, the comforting grip of an ultimately ineffable concern.

The title of the training I have just wrapped up is Hospice and Palliative Medicine. Hospice means a roadside inn for pilgrims and indigent travelers. Palliative means more concerned with the experience than the reason it happened to occur. It is very important to the people who advocate for the field of palliative medicine, for its funding, legitimacy and worldwide integration into medical practice, that we always stress at every public opportunity that palliative care is for the living. Of course we are all of us dying, but their concern is worth a note. Because doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.

On the spectrum of death, unless you are to die instantly, in your sleep, say, or as my father did recently, in a chair in front of the television, so suddenly you do not even have time to rise, to try to get to a phone, so shocking and abrupt it can hardly register for you, the participant, the decedent, as having any quality, a good death requires a little bit of time—to rest, to reflect, to say the four things they say it helps to say: I am sorry, I forgive you, and the other two I forget. Hospice, though etymologically a place, is in modern usage a philosophy of care you can receive in your home or a nursing home or a hospital or anywhere, a team of nurses, doctors, social workers, chaplains and others who help you navigate the process of becoming dead.

Once on hospice, you stop receiving treatments that slow down the dying process and your care is focused on medications, practices and routines that can make your experience at the end of life less unpleasant. Palliative care, distinct from hospice, is a broader concern for anyone in a body enduring illness, a team performing symptom-focused assessments on anyone whose health is at times at odds with their quality of life.

Doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.The first person I ever saw die, and the second, and the third, were people in late age, their seventies or eighties, who died of cardiac arrests in the hospital. It goes like this: A call goes out overhead and a team comes at a run through the halls of the hospital, to where whoever found the patient pulseless is already over them, performing chest compressions. The body is stripped, legs and arms each a separate place, a project, someone placing a new line or stabbing for an arterial blood gas. The air fills with a tension you could tell yourself is excitement, although in tenor it is more like watching someone being arrested, surrounded, attacked. Every action argues for itself, right on the line of brutality.

Even before I saw all this, I often feared my heart would stop, mostly when it was night and I could not sleep. I would listen to my heart beat and beat, willing another, on and on and on. One of the unit physicians, when he learned I was not even enrolled yet, still in my first line of work, adjuncting in an English department, begged me to stay where I was. This job, he said, it eats your whole life, it is terrible. I can only guess what he meant, that his hours were long and his life and work not clearly delineated, that whatever he had imagined that his life would be like here, he had been wrong. The patients with heart failure were unfixable, noncompliant, always coming back.

Years later, I had finished medical school and was resident, training as a specialist in disorders of the brain. The patient was well-appearing, able-bodied, mid-fifties, a construction worker presenting with a few weeks of dizziness. An MRI showed small bright lesions all over his brain, a shower of metastasis. The word innumerable is never one you want to hear from a doctor. A pan CT showed the likely source of the mets, a large chest mass concerning for lung cancer. He had no idea, no other symptoms, just a little lightness in the head.

What does this mean, he asked, and his doctor, the attending physician who was my boss, told him he would have to wait, to see a number of specialists: the interventional radiologist, who would biopsy the lung mass; the medical oncologist, who would match the tissue sample to a course of chemotherapy; the surgeon, who would tell him his tumors are inoperable; the radiation oncologist, who would blitz his brain and chest with radiation.

He waited for days in bed as we coordinated the other doctors. The teams came and went, each saying its piece, in long speeches of words that made sense one by one but kept not adding up to anything. I had been taught not to tell him much, and it was true, we wouldn’t know the whole picture until after the biopsy, until the tissue was sent for tumor markers, and the treatment course sketched out. What I wonder, he said to me one afternoon when I was at the bedside, is why no one will just tell me that this is really bad.

One reason he never quit smoking was he was afraid of gaining weight. He didn’t want to get diabetes, which is the disease that killed his father around his same age. On the bloodwork we sent before his scans came back we found out that he had diabetes anyway. When I told him this, he laughed, and we shared the cannoli his wife brought in from their favorite Italian bakery. It is bad, I told him. It is really bad. He died, he did, a few months later.

As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without.There is a stance that appears most in medical-school application essays that the purpose of medicine is to relieve human suffering, but it is truer to say, in Western medicine, that the goal is the prolongation of life. Nothing wrong with that, on its face, in some cases, though it may be reasonable to wonder, since everyone dies, what is the cumulative effect on medical practitioners, our hearts and heads, that we miss our goal in every case; a failure rate of one hundred percent.

But for you, for now, you have high blood pressure, high cholesterol, so take this pill to bring it down so that it doesn’t give you a stroke or kill you. If the cost is low and the benefit is high, the choice is clear, but in chronic illness and in life-limiting illness we find a need to add a little background math: this treatment, say it is whole-brain radiation, will prolong your life, and the cost of that prolongation is, say, aging your brain by forty years. This treatment, a percutaneous endogastric tube, will prolong your life but you will never be able to eat food by mouth again. As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without. And this is the work that palliative care is about.

What is it, exactly, that you want me to do? The woman who was asking had metastatic cancer in her abdomen. Yesterday we told her that she had no options  left for treatment. With her permission we shared a prognosis of weeks to a few months. Her face didn’t move as the news broke. She looked off to the left at the wall. And someone gave the speech on the philosophy of hospice, and she shared a hope to go home. It is the next day, with the logistics all already in process, that she asks.

What am I supposed to say now, what am I supposed to be thinking about? I can’t tell you how everyone I meet feels about the things we tell them, though young in this work I have seen a few trends. And something I see a lot is people who feel that their lives got away from them, they were always just watching, as from the station looking at faces flicking by on a moving train, and what is left to them now in the time they have left is only fear and suffering of unclear significance. What do I do with a thing like that? I hear it, and I help where I can.

What I am always saying in my Descartes speech is that we are not what we think, but we become what we are doing. I am worried about what this means for the doctors. Whenever I am lost, I try to stop moving, in case I am running off again in the wrong direction. It is never too soon to sit down and map out our values, to consider if we want to end up in the place where we are going. No, not yet, we aren’t there yet, says the oncologist. This is just a bump in the road.

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A History of Present Illness by Anna DeForest is available now via Little, Brown.

Complete Article HERE!