Tag: Death Talk

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The new art of dying

By Jessie Li

Modern burials and death practices are changing how we die and where our bodies go after we die.

Why it matters: Today, the funeral industry is worth $17 billion ($). Businesses are innovating on traditional practices, and more people are taking control of how they wish to die and be buried — in unconventional, surprising and even extraterrestrial ways.

It now ends with most of us getting turned into dust and obituaries posted online. Some new burial practices and places include:

  • Orbit in outer space. SpaceX recently launched the cremated remains of 152 people on its Falcon Heavy rocket. A company called Celestis facilitated these “funeral flights,” charging over $5,000 for 1 gram of “participant” ashes.
  • Transformation into a diamond. Engineers can turn the carbon from human ashes into diamonds that are physically and chemically identical to natural diamonds.
  • Green burial. Touted as an environmental and financially friendly option, green burials can be as simple as wrapping a body in a cotton shroud and lowering it to the ground — factoring out conventional vaults, coffins and embalming.
  • Green cremation. Instead of using flame, green cremation uses heated water and an alkali solution to accelerate the natural decomposition of the body.
  • Celebration of life ceremony. In lieu of a somber funeral, an end-of-life ceremony celebrates a person’s life and legacy, often with a dedicated event planner, a speaker and activity lineups.
  • Digital tombstones: One Slovenian cemetery is experimenting with digital tombstones that can show pictures and video, and potentially link to a smartphone application for interactivity.
  • Smart library. One Tokyo crematorium allows you to summon ashes with the swipe of a card: A machine transports the ashes from an underground vault through a conveyor belt to the right room.
  • Pet burial. “Togetherness Resting Places” reunite humans and pets “when the time comes.”
  • Memorial reef. Florida-based company Eternal Reefs mixes ashes with “reef ball” material, creating memorial reefs that can serve as habitats for sea life.
  • Living wake. Some people are attending their own funerals ahead of death — by holding a “living wake,” offering family and friends a chance to say goodbye.
  • Live-streamed funerals. An estimated 20% of funeral homes offer livestreaming, allowing those who can’t make it to a funeral to share the experience — and those who’ve attended to look back on it.
  • Disney World. About once a month, Disney employees clean up scattered remains ($) in the park, where visitors sneak in ashes to disperse at Cinderella’s castle, on the Pirates of the Caribbean ride and throughout the Haunted Mansion.

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    Complete Article ↪HERE↩!

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    Who Uses Medical Aid to Die in Oregon and Washington?

    The researchers compared demographics of users in the states with the longest-running programs.

    There are many similarities among those utilizing medical aid-in-dying programs in Oregon and Washington, researchers have found.

    By Katelyn Newman

    The outcomes of medical aid-in-dying laws in the two states with the longest-running programs in the U.S. show many similarities in who is using the option, a new study finds.

    With more states implementing laws to assist terminally ill patients in taking their lives, researchers from across the United States examined empirical data of Oregon and Washington to find out if there were similarities in who’s asking for and taking medical aid-in-dying prescriptions. The data came from published annual reports from the Oregon Health Authority and Washington State Department of Health that ranged from 1998 to 2017 in Oregon and from 2009 to 2017 in Washington.

    They found that 2,558 – 76% – of the 3,368 written prescriptions resulted in patients’ deaths, with patients more likely to be non-Hispanic white (94.8%) and 65 years or older (72.4%). The most common underlying illnesses were cancer (76.4%), neurologic illness (10.2%), lung disease (5.6%) and heart disease (4.6%), with loss of autonomy, impaired quality of life and loss of dignity the most common reasons reported by clinicians for patients who pursue medical aid-in-dying. Ages of all participants over the time periods ranged from 20 to 102, and participation was nearly equally split between males and females.

    “Among patients who ingested the lethal drugs and were evaluable for complications, only 4% experienced complications, the most common being difficulty ingesting or regurgitation of the lethal drug,” according to the study, published Friday in JAMA Network Open. “Short median times to unconsciousness and death prevent undue and lengthy suffering and reflect the efficacy of drugs used in (medical aid-in-dying).”

    Further, the majority of patients who received the prescription had some college education (71.5%), had medical insurance (88.5%) and were enrolled in hospice care at the time of their deaths (76%). A total of 2,075 (81%) of the patients died at home, the study said.

    So far, nine jurisdictions – eight states and the District of Columbia – have implemented medical aid-in-dying laws since Oregon’s went into effect in 1997, with New Jersey becoming the most recent on Aug. 1. Maine will join the group on Sept. 15, when its law goes into effect.

    But using empirical data to show the demographics behind these longstanding laws portrays that the standard is inherently ethically good when data “cannot tell a society or a profession what ought to be done,” Dr. Daniel Sulmasy, acting director of the Kennedy Institute of Ethics and professor of biomedical ethics at Georgetown University and critic of the practice, wrote in an invited commentary that accompanied the study.

    “Whether just 1 person or 100 000 persons legally avail themselves of lethal prescriptions cannot tell us whether the practice is right or wrong,” Sulmasy wrote. “Despite public arguments that (physician-assisted suicide) is needed to avoid excruciating pain and other symptoms, the reasons attributed to patients who seek PAS are not uncontrolled symptoms but lost autonomy, independence, and control.”

    “About one-third of patients die without taking the drugs, which may suggest that patients only wanted the security of having a way out, but it could equally indicate that they died before using the drugs or changed their minds about using them,” he added.

    Among its limitations, the study notes that the underlying reasons patients requested medical aid in dying were not collected from the patients themselves but rather from the physicians in a follow-up questionnaire. Still, the results presented show no intentional targeting of “socially disadvantaged patients,” an often cited concern among critics, and “most patients who acquired lethal prescriptions had cancer or terminal illnesses that are difficult to palliate,” according to the study.

    “There is significant room for further integration of palliative care, social support services and case management in end-of-life decision-making with the intent of increasing the options available to those facing a terminal disease,” the study said.

    Complete Article ↪HERE↩!

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    Disenfranchised Grief

    When Grief and Grievers Are Unrecognized

    by Lisa S. Zoll, LCSW

    Grief is disenfranchised when others avoid talking to someone about a painful loss or use a cliché that minimizes that loss. When this happens, the visible evidence of the grief tends to disappear from public sight. Corr (1999) states that whether these types of responses to a loss are careless, unintentional, or a deliberate “restriction of the meaning of grief to its emotional components is an unrecognized form of disenfranchisement of the full grief experience” (p. 9). Essentially, when a loss is minimized, the griever may feel tentative or inhibited about grieving the loss publicly. Doka defines this concept of disenfranchised grief as grief that is not or cannot be openly acknowledged, socially validated, or publicly supported (Doka, 2002a).

    There are three primary concepts that serve to disenfranchise someone’s grief: 1) the relationship between the griever and the deceased is not recognized, 2) the death or loss is not recognized, and 3) the griever’s ability to grieve is not recognized (Corr, 1999). This article will address these three concepts through the use of case examples. Loss, in this article, is defined as the disappearance of something cherished, such as a person or possession to which there is an emotional attachment or bond (Zoll & Shiner, 2017).

    The Relationship Is Not Recognized

    Through the foster system, a couple was attempting to adopt two young girls, ages one and three, who had been living in their home. During the four months of foster placement, the couple had developed a parent-child relationship with the girls. At the custody hearing, the judge awarded custody to a distant relative of the biological mother. For all intents and purposes, the couple had lost the parental relationship with the girls, a loss that felt as significant as losing legally defined “daughters.” The couple observed, for a short time, that although their loss was recognized, it seemed that the significance and depth of loss was not. The couple reported feeling a sense of abandonment by those closest to them. In their experience, “nobody understood, and nobody brought it up, so they could understand.” The response, “At least, they got to be with you for that time” (M. & J. Schwartzman, personal communication, February 11, 2018), seemed to diminish the magnitude of their grief. Ten years later, that loss was still palpable to the couple. Loss, in this case, was related to the significant emotional bond that the couple had formed with the girls.

    The Loss Is Not Recognized

    Many losses that are stigmatized by society as “not worthy” of grief are grieved silently and privately. Death-related losses such as suicide or drug overdoses, either intentional or unintentional, may fall into this “not worthy” category. Non-death related losses may also fall into this category, such as losses related to domestic violence or addiction. Holderness (2018), who recently publicly described the abuse that she suffered at the hands of her ex-husband, says that her ex-husband’s anger and her experience of “being subjected to his degrading tirades for years chipped away” at her independence and sense of self-worth. “I walked away from that relationship a shell of the person I was when I went into it, but it took me a long time to realize the toll that his behavior was taking on me.” Looking back on her experience, Holderness describes a loss of safety and security, a loss of relationship, loss of her independence, and loss of her self-worth. Such multiple losses are frequently associated with domestic violence (Hollinger, 2010)

    Significant losses are intrinsic to addiction and to addiction recovery. Addiction is a pervasive and significantly distressing disorder that can consume a person’s life. Long-term addiction to substances or to behaviors can lead to losses that go unrecognized in the form of damage to or termination of relationships, loss of job and/or career, decline in financial status, and deterioration of health. (Mager, 2016).

    Acknowledgment of a loss is intrinsic to the recovery process. To maintain sobriety, a person struggling with addiction is often asked to give up many of the people, places, and things that are associated with the active addiction. They are often asked to give up anything that “triggers” the addictive behavior. For example, in the case of alcohol or substance use disorders, related losses might include relationships with friends and family members who are associated with the use of alcohol and could include the prohibition of visiting or frequenting associated venues. Likewise, a job or career that does not support recovery efforts and the maintenance of sobriety may become a casualty and loss. Feelings of loss and subsequent grief occur with each part of one’s current identity that must be given up to achieve and maintain recovery (Mager, 2016).

    The Griever Is Not Recognized

    When Lynn Shiner’s two children, Jen (age 10) and Dave (age 8), were murdered by her ex-husband who then took his life, Lynn was the obvious griever. Her grief was thrust unwillingly into the media spotlight.

    At the time of the murders, Lynn was in a relationship with a man who later became her husband. Her boyfriend’s trauma and grief went essentially unrecognized for, probably, several reasons. First, though Shiner’s boyfriend had a close relationship with the children, he was not their father. Second, from outward appearances, he pushed his own grief aside as he focused on being a caregiver of Shiner and her grief, though he reports he did privately grieve with Shiner. Third, his friends questioned his motives for remaining in the relationship and, on more than one occasion, suggested that he run the other way. In his love for Shiner, he remained committed to the relationship. Members of his support system were incredulous of this attitude and of his decision to stay in the relationship. Though there is no question that he had an emotional bond with Shiner’s children, and that he deeply grieved their loss, publicly, his grief was essentially invisible (P. Shiner, personal communication, January 11, 2017).

    Shannon Wood, the best friend of Shiner’s murdered daughter Jen, was not aware, until after the murders, of the violence to which her friend was exposed. Wood describes herself as an indirect victim of the domestic violence in Jen’s home. Wood says that she still remembers the fear that she experienced the first year after Jen’s death, as a 10-year-old. “I didn’t like going into dark rooms by myself, because I feared Jen’s father would be there, or my dad would ‘do’ something, or that somebody would, in some way, hurt me.” The loss that was being felt by this young girl, who was grieving the loss of her best friend, went unrecognized. Wood felt isolated in her loss and believed that no one could fathom how she felt. Her proof was the silence she encountered on the topic of Jen’s death. After the funeral, there was little recognition or acknowledgment that Wood had lost her best friend. Her grief quickly became disenfranchised, her fears invisible to others (S. Wood, personal communication, February 8, 2018). It has been suggested that young children may be incapable of grieving or do not have the need to grieve (Corr, 1999). This example proves otherwise.

    Recognizing Unrecognized Grief

    Following a loss, an essential element of the healing process is that the loss be recognized and validated. In the cases cited above, the losses were essentially not perceived as legitimate. When treating individuals whose grief has been disenfranchised, “The goal is always the same, to enfranchise the disenfranchised griever” (Doka, 2016, p. 222). Hartwell-Walker (2018) sees the roles of therapists as “providing what an individual’s immediate social world either can’t or won’t” (p. 2). Therapeutically, it is helpful for grief counselors to legitimize and validate a client’s feelings and to assist them in identifying aspects of disenfranchised grief.

    One of the aspects of disenfranchised grief to be identified by a client may be the empathic failure of others to understand the client’s experience of emotional pain and the subsequent inability to acknowledge the client’s grief (Doka, 2002b). Other factors associated with disenfranchised grief may include the individual’s own sense of shame and guilt regarding a loss with the perception that their grief is not valid in the eyes of others. Such minimalization can inhibit both the acknowledgment of a person’s own grief and the solicitation of social support from others. On an interpersonal level, others simply may not acknowledge, validate, or offer support for the grievers, as in the case of the failed adoption example above (Doka, 2002b; Hartwell-Walker, 2018). Losses associated with social stigma, such as suicide, a drug overdose, addiction, or abortion, fall into this category.

    Recognition and validation of the multifaceted aspects of loss and grief should be sought throughout the therapeutic work to empower those experiencing disenfranchised grief. Beyond identifying factors that contributed to empathic failure of others, interventions might include individual therapy, narrative therapy, support and self-help groups, and the therapeutic use of ritual. It is important that interventions help provide a sense of either individual or shared validation of the experienced loss and that the grief be normalized within a safe and supportive environment.

    Therapeutic rituals can include, but are not limited to, planting a tree or flowers in memory of the deceased, donating to a beloved charity of the deceased, visiting the burial site, carrying an object that is a reminder of the deceased (such as a piece of jewelry or other personal possession of the loved one), creating epitaphs or artistic expressions of love and grief, writing letters to the deceased, and/or establishing a Facebook memorial. These rituals help to affirm, either publicly or privately, the legitimacy of the griever’s loss (Doka, 2002b; Herbert, 2011; Winokuer & Harris, 2012).

    Finally, social workers working with individuals with disenfranchised grief should remember the acronym LEVELS: Listen, Empathize, Validate, Educate, Legitimize, and Support the individual’s experience of loss.

    Complete Article ↪HERE↩!

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    Dating While Dying

    I found myself terminally ill and unexpectedly single at 40. I didn’t know which was more terrifying.

    By Josie Rubio

    One night, as a friend and I were headed to a bar to see someone I had met on a dating app, she asked, “What do you tell these guys?” I pulled up my profile and handed her my phone.

    “I have cancer so if you want to hang out, act now!” reads the first line.

    “This is great,” she said with a laugh.

    A year ago, when my treatment was going poorly and I was getting sicker, my boyfriend of 12 years took a business trip to London, where he “reconnected” with an old friend, a recently separated Pilates instructor. After he booked himself a solo trip to Europe, I overheard him talk about how much fun he had riding around on the back of her motorcycle, holding her hips. He also said he enjoyed walking around by himself without thinking about cancer. And me, apparently.

    And that was it. Our relationship was over. I found myself dying and unexpectedly single at 40. I didn’t know which was more terrifying.

    My cancer isn’t going away. It’s being treated as a chronic disease. I’m definitely going to die from it, if I don’t get hit by a bus. (Why do people always offer that as an alternative to dying of cancer? “You never know!” they say cheerfully. “You could get hit by a bus tomorrow!”) Doctors buy me time and wellness with treatments, injections and transfusions. I have months of wellness, if I’m lucky. But over all, probably not much time.

    The truth is, I was prepared to die instead of date again. From what some people told me, I might as well already be dead as a single woman over 40.

    Right after the breakup, I resisted dating. I knew I’d have limited time to spend with people I care about before I got sick again. Why would I want to meet strangers? Still, friends pushed me into it. Sometimes literally. At Octoberfest in Copenhagen, the friend I was visiting declared, “You can’t let your last experience be so awful,” as he steered me into a crowd of Danish men in lederhosen drunkenly dancing and singing to “Time of My Life.”

    Back home, my resolve weakened. One night I saw my ex at a concert with the woman he left me for. I didn’t feel sad or jealous, just relieved it was her and not me putting down a credit card at the bar to buy his drinks. It was time to move on.

    One friend helped me sign up on a dating app. Another — the person who would become my dating app Sherpa — helped me with my profile and photos. “This guy has a picture of himself with Bill Murray,” I noted as I started swiping for the very first time. “Tinder is full of pictures of Bill Murray,” my friend said sagely.

    Since my cancer diagnosis six years ago, I’ve had poison pumped into my veins, tubes threaded into my neck, organs removed, radiation tattoos applied. I’ve shaved my head multiple times. I’ve coughed up pieces of my esophagus. Doctors have given me a spinal tap and rooted around my bone marrow with a needle. But meeting a stranger for a date filled me with dread. “I’d rather be getting a bone marrow biopsy,” I texted my friends before marching out to meet my first date in more than a decade.

    But I went. And it was fine. Fun, actually. So I stuck with it and dated some more.

    After one great date, I had a crushing realization: I have only the present to offer, not a hopeful future. “You don’t know that,” a friend told me.

    “Because I could get hit by a bus tomorrow?” I replied with a weak smile. Within a month I had given myself a black eye, chipped a tooth and skinned my knee. That morning, I had almost stepped off a curb into the path of an oncoming van. The likelihood of meeting my end slipping in the shower actually seemed to be edging out the cancer.

    “No,” she replied. “Because you could still be complaining to me about dating when you’re 90.”

    As I went, I made dating rules, then broke them. I pay for myself, because letting someone else pay feels too transactional. Plus, after years of paying for myself and my ex, it still seems like a good deal. I don’t eat on first dates, because it’s an ugly scene.

    Then, after a meet-up drink, someone asked me to have dinner with him and insisted on paying. I told him, as I devoured a duck breast like I was a medieval king, that I don’t eat lambs because they’re cute, and I don’t eat octopus because they’re smart, but it’s O.K. to eat ducks because I read that they can be necrophiliacs. “If you think about it,” I said, motioning with my fork to my smoked duck in soy-honey jus, “being eaten is really the second worst thing that can happen to them after they die.”

    I am great at date conversations. Cancer? Necrophilia? Pick a topic.

    What is someone with terminal cancer doing on a dating app? I want what we all want, I guess. I want someone to enjoy spending time with. To tell me I look nice. Only it’s all for a much shorter time. I don’t expect someone to stay with me once I get really sick again. My last relationship made me feel like a burden. In actuality, he was lucky to be with me. I know that now.

    I was (and still am) also afraid of something working out and hurting someone else. It feels selfish. But when I like someone, I’m all in. People probably think it’s because of the cancer, but I’ve always been like this, since my very first date at 14 on July 4, 1992, when I sat in a wooded clearing on my first boyfriend’s four-wheeler watching fireworks from nearby SeaWorld.

    I had to get home but didn’t want to leave without my first kiss. When we wished on a shooting star, I had the opening I needed. “Do you know what I’ve wanted to do all year?” I said, referring to the crush I’d had on him ever since he entered my freshman English class the first day of ninth grade wearing a Guns ’n’ Roses T-shirt.

    “What?” he asked.

    “Kiss you,” I said. Then we kissed under the fireworks.

    When someone recently texted to see what I wanted to do on our next date, I replied, “I hope this isn’t too forward, but one thing I would like to do is kiss you someplace that isn’t a rainy street corner.” Apparently, I am still the same person I was when I was 14.

    Cancer left me with scars, radiation tattoos and a Mediport, but the bad relationship left me with scars I sometimes fail to see. I apologize too profusely, like when I knocked a date’s napkin off the table. “It’s O.K.,” he said, looking at me quizzically. “I’m not going to yell at you.” I realized I had been waiting for him to scold me, like my ex would have.

    The guy who made me break some of my rules made me shatter more. I found myself, at his insistence, reluctantly and badly dancing, but laughing the entire time. I’ve held his hand across restaurant tables. I steal kisses from him in public. Sometimes I don’t recognize myself anymore.

    I’m so happy and so sad at the same time.

    Death isn’t an abstract concept. I live week to week, moment to moment. I live fully, but I have always done that. Since the new treatment, I can even walk around sometimes not thinking about cancer. I agree with my ex: It’s nice. Since that first 1992 date, I just wanted to find someone and feel like that part of my life was settled. But from ages 28 to 40, I just settled. Period.

    When my ex kissed me goodbye on the day we broke up, I thought, “This will be the last time a man kisses me.”

    It finally feels good to be wrong about something.

    Complete Article ↪HERE↩!

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    How to avoid regret

    What a doctor wishes people knew about living, dying well

    By A. Pawlowski

    Here’s what really matters at the end of life and how to avoid the biggest regrets.

    Life is precious because it ends one day, but death is not the enemy. The enemy is a wasted life.

    It’s a message Dr. BJ Miller, a hospice and palliative care specialist in San Francisco, wants people to remember as they come to terms with their mortality. Miller’s own brush with death as a college student left him a triple amputee and an advocate for a dignified end of life.

    “There’s no guarantee for tomorrow, ever,” Miller told TODAY.

    “Watching my patients die helps me think about what’s important to me in my life. So when it’s my time, hopefully I’ll have fewer regrets and, along the way, I hope to have a more meaningful life thanks to their lessons.”

    Miller, co-author of the new book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” shared his findings on how to live and die well:

    Avoid common and painful regrets at the end of life

    Miller: There’s usually regret about having been unkind and selfish. It’s shame around having ever been a jerk to anybody, including to oneself.

    One of the things dying teaches you is life goes on outside of you, too. You are a grain of sand among a gazillion grains of sand and the sooner you can delight in life outside of yourself, the better you’ll be able to handle your own death and the kinder, more forgiving you’ll be.

    Life is just hard and there’s only so much we can get done in it. Forgiveness ends up being a huge theme. If you find yourself in a petty argument that kept you from re-establishing contact with someone you once loved, those get revealed to be practically almost silly at the end of life and people often regret losing contact.

    Participate in your life and your dying

    Miller: This is your life. Sometimes patients tell me they got robbed or that this is a huge detour or some anomaly in their life. The reminder is: No, this is your life — this is it. And because time is precious, if you don’t engage with your life on a real level, you are squandering your time.

    Be an active participant in your own life in every way, including your illness and your dying, because those are parts of your life — your life while you have it. You don’t need to control everything, just participate.

    Remember what people at the end of life care about most

    Miller: If someone is lucky enough to have a family or a group of friends who are nearby, one thing a dying person really wants to know is that their loved ones are going to be OK. That they’re going to keep living, keep trying and going to try to love themselves and the world. That’s a really powerful thing.

    So as a loved one, one of the kindest things you can do for someone who is dying is to let them know you’re going to take care of yourself. That’s not a selfish thing; that’s something the dying person will often really long to hear.

    Take comfort that many people have accepted the end

    Miller: In most cases I’ve been involved with, by the time death rolls around, the dying person is often really done with this body, done with this life. And whether by force or by choice, acceptance often does come because the fact of dying becomes just so obvious, it’s just so clearly coming.

    Dying is often harder in some ways on the people around the dying person — harder on the people who have to keep living.

    Clean out the skeletons in your closet before the end

    Miller: There’s a hygiene to the process of dying. You go through life and accumulate all this stuff and all that has to go away when you die. You can leave all this emotional and physical residue of stuff, or you can clean it up and by doing so, leave less of a mess for people who are going to live on.

    It’s a cleaner grief, in a way, not complicated by finding old letters with secrets in them that can be a source of torture. If you clean up your life on the way out, it can feel wonderful, it can feel very true and it can be an extremely kind gift.

    Keep hope going

    Miller: I honestly believe that we as a species will do better if we come to terms with our mortality earlier in life. Get used to exercising hope within the framework of life being short and precious.

    If my patients come to me and are losing hope, I’ll say “OK, let’s come to terms with the hope that’s being lost. Let’s grieve that, but now let’s find what we still can hope for.”

    As long as you have another breath in you, you can hope for something.

    As long as you have another breath in you, you can hope for something: Peace, comfort, the well-being of people you love. It’s always a matter of framing your hope.

    Simple pleasures, rather than grand moments, are appreciated at the end of life

    Miller: It may be simply going outside and feeling the sun on your skin. A shower can be magical, sunlight can be magical. Just delighting in the cool breeze on your face or the sound of laughter. Very basic primal stuff.

    Think about what might happen after death

    Miller: If you’re around folks who are taking their final breaths, you can see life going out of somebody. You can tell the body is just a shell, something is gone now. Where does that life go? Is there a soul? Is there a spirit?

    I find a joy in not knowing. I know dying, but I don’t know death. My compromise is to embrace the mystery of it all.

    Complete Article ↪HERE↩!

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    How Attending A Death Cafe Helped Me Heal After My Grandmother’s Death

    I found myself opening up to strangers about death and finding a sense of comfort in the process.

    By Madeline Wahl

    On the last day of my grandmother’s life six years ago in fall 2014, I hugged her goodbye after an afternoon at my grandparents’ home in South Florida and expected to see her for lunch the following day. However, I woke up the next morning to the news that my grandmother had died suddenly in her sleep. Instead of meeting up for lunch, my family called to make funeral arrangements. I rescheduled my flight and figured out bereavement days with my job at the time. Because I was on vacation, I thankfully had time to spend with my grandmother during her last unexpected days. The shock from finding out she had died lasted through the week and well beyond her funeral.

    After her death, I flew back to New York City to return to what remained of my old life. I’d wanted to leave everything I knew and loved behind and embark on an adventure to a place where I knew no one and recognized nothing. In winter 2015 I’d finally had enough courage and money saved up to visit Iceland on a solo trip for my grandmother’s belated deathiversary. I didn’t expect to find a group of Americans and road trip around the southern coast of Iceland and fall in love with traveling alone, a new part of my life my grandmother will never know.

    Every year since my grandmother’s death, without fail, I panic around her deathiversary. How could I commemorate her and the impact she had on my life? In the years since Iceland, I’ve talked with family, went to yoga and stayed low-key. In 2018, four years after she died, I thought I’d go on another solo trip because I wasn’t working and had the time to travel.

    However, instead of traveling, I did something different and more close to home. I attended a Death Cafe, where strangers gathered together to talk about death in a supportive environment, at a cemetery in Brooklyn on a cold autumn weeknight. I was intrigued about going to a cemetery where the topic of conversation revolved around death. It wasn’t like death was a hot topic of conversation for small talk, so I didn’t really have the opportunity to bring up death on a whim to friends and family, specifically my grandmother’s death, which happened years ago. I wasn’t sure what to expect or how much I would even talk about such an intimate part of my life with people I didn’t know. Once inside the crematory’s chapel, I noticed a small group of people gathered around trays of cookies and water bottles. The director introduced herself and the backstory of the Death Cafe and then separated us into smaller groups.

    My group chose a private back room with urns lining the walls. We pulled our chairs together in a circle and introduced ourselves. The conversation started with why we were there and why we decided to attend a Death Cafe and then expanded to religion, stories of loved ones and friends and their passing and then to the beyond: What happens after we die? Is it good that we don’t know what happens? What would happen if we did? One girl asked how grief changes over time, and how grief changes people. We sat in reflective silence and I thought about the week after my grandmother died when I needed to be around only close friends and family. All of my senses had been muted. I lived life that week in quiet contemplation surrounded by familiarity, the exact opposite experience I was having at the Death Cafe: alone and surrounded by strangers.

    After we rejoined the main group, the organizer shared two poems about death with us before concluding the Death Cafe. I felt a sense of peace at having talked about my grandmother to a group of strangers and keeping my memory of her alive. After my grandmother’s death, I was so angry at how she died. The director spoke of a good death and what that means, and my mom, after my grandmother died, had also mentioned that it was a good death. I’ve realized I was upset at the way my grandmother passed and, in a way, of our unfinished conversation. Never saying goodbye and never having that final lunch together.

    In the years since my grandmother’s death, I needed to confront my ideas about life, death and everything in between and beyond. I needed the space to talk to people who hadn’t moved on because they didn’t have a starting point to move on from. I found myself opening up to these people and becoming more intimate the further our conversations progressed. After all, how do we talk about death when death is such a taboo topic to talk about?

    My grandmother’s presence is still here, in the jewelry and pictures and memories left behind. Attending a Death Cafe provided a space of comfort and allowed me to talk openly and freely about my thoughts and feelings to strangers, and since then, family and friends, about all aspects of death in an open manner. My grandmother’s deathiversary, I’ve come to realize after leaving the Death Cafe, is another day that comes and goes with the passing of time. While my grandmother’s death came as a shock, the ending of her life came, as my mom said, as a mercy to her. A good death to a good person, and these realizations came from open conversations about death.

    Complete Article ↪HERE↩!

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    Kathy Brandt, A Hospice Expert Who Invited The World Into Her Own Last Days With Cancer, Dies

    In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

    by JoNel Aleccia

    Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.

    Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

    “I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

    Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

    For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.

    After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

    “If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

    The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

    In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

    “It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

    During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

    “My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

    A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.

    The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

    “As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

    Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

    “I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

    Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

    “If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

    Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

    In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

    Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

    “From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

    A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

    Complete Article ↪HERE↩!