Category: Death Education

Posted on

5 Steps for Dealing with Anticipatory Grief

[I]t might be the hardest part of caregiving: Watching your loved one slip away step by terrible step, knowing you can’t stop the decline and grieving the loss of the person you once knew, long before they’re actually gone. Psychologists call this process anticipatory grief, and it’s very common among caregivers and family members of those suffering from Alzheimer’s disease, cancer, and other terminal illnesses.

Coping with Your Grief

“As a disease progresses, there is so much frustration and sadness associated with watching the person you once knew go away,” says Vince Corso, M.Div, LCSW, CT. “It can be overwhelming.”

Corso provided care to his mother, who suffered from Alzheimer’s. He found one of the painful milestones of the disease as the point at which she no longer recognized him. “My mom didn’t recognize us, and she confused us with other people. As a son and a caregiver, that was really hard. I had to leave the room.” But after a period of time, he says, he became acclimated to his new reality and began to accept it. He found that sharing the sense of loss with family members can be very helpful. “It’s so crucial that family members talk about the loss.”

Here are some other ways caregivers can work through their feelings of anticipatory grief:

Allow feelings of grief to help you prepare

Take time to examine unresolved issues between you and your loved one. Imagine life without him or her. “Say what needs to be said,” Corso advises. And if your family member is still well enough, settle legal and financial matters and discuss end-of-life wishes.
Educate yourself about what to expect

Learn about your family member’s condition—know the symptoms, the side effects from any treatments, and the prognosis. It may help you to feel in control if you understand what is coming down the pike.

Talk to somebody

Find a support group of people who are experiencing the same thing, whether it is online, in person, or over the phone. “Someone in a similar situation can provide a lot of insight,” says Corso. “And it’s okay to be honest about your feelings. You’re not being disrespectful to your family member if you express your frustration.”

Enlist help and continue to live your life

Reach out to family and friends or hire someone to help with the care of your loved one. Don’t put your life on hold. Meet with friends and try to have fun when you can. “In the long run, it will help the patient and yourself,” says Corso. “You’ll have more energy to care for your loved one and to do what you need to do.”

Create moments your family member can enjoy

Even though your family member is no longer the person she once was, she can still enjoy pleasurable activities with you. Take mom outside for some fresh air, play music for her, do simple puzzles if she is able. In the end, these moments might be what you cherish most.

Helping Your Loved One Adjust

When illness or injury robs your loved one of the ability to remember things about themselves, it can be scary and profoundly difficult. How do you help them cope with the changes in memory and identity?

Look for ways to add new activities to your loved one’s life, or think about how you might incorporate elements of a favorite pastime. If your mother was an avid golfer, she may have no interest in taking up knitting if her doctor tells her to stay off the links. Ask her what she misses about golf, though, and you may realize that she misses the camaraderie more than the activity itself. Would she be able to meet her foursome for lunch after they’ve finished their round?

Remember too that this is a type of loss. Feelings associated with the grieving process, including denial, anger, and depression, are normal. Talking to a social worker, therapist, clergyperson, or even a sympathetic friend may help you or your loved one manage the emotions and come to terms with the loss. If there’s a support group in your area, hearing how others have coped with the changes you’re experiencing can provide insight and concrete steps, and learning that you aren’t alone in your feelings can be reassuring.

Complete Article ↪HERE↩!

Posted on

Do We Have A Right To A ‘Good Death’?

By

[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.

Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?

The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.

Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.

Is There a Right to a Good Death?

In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.

A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

Sarah Simons

This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.

A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.

What Exactly is CPR?

Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.

CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life. 

CPR is traumatic, undignified and usually unsuccessful in patients of all ages.

Sarah Simons

Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.

 

CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.

What Do Experts Have to Say About This?

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”

The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.

Making the Right Choice For The Patient

Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible. 

Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.

Sarah Simons

Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.

As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.

Complete Article ↪HERE↩!

Posted on

‘Living While Dying,’ Cathy Zheutlin’s film explores end of life

By

Filmmaker Cathy Zheutlin, right, with her mother, Jonnie Zheutlin. Cathy Zheutlin was inspired to make the film ‘Living While Dying,’ when her mother’s partner was diagnosed with terminal cancer.

“It wasn’t loss that triggered this, it was curiosity,” says filmmaker Cathy Zheutlin of her new documentary, “Living While Dying,” a short film whose subtitle reads: “A story of life. A story of death. Finding joy in the journey.” Zheutlin, who stumbled upon the good fortune of having two parents alive in their 90s, became fascinated with the idea of mortality, an inevitability we all face, despite it being hidden from view — and polite conversation, for that matter. Her exploration of the topic extends an invitation to viewers, one that hinges on conversation as the most necessary component surrounding mortality and the end-of-life choices that arise as a result. After having made its debut in Ashland and Portland, Oregon, where the filmmaker and her mother reside, Zheutlin’s film is making the rounds in the northeast; it will be screened Wednesday, June 6, at 7:30 p.m. at Kimball Farms Life Care in Lenox.

The inspiration for Zheutlin’s film came when her mother’s partner, Clair, learned he had terminal cancer. “We had a dying man in the living room,” she recalls in the film’s trailer. “I am a filmmaker so I asked Clair if I could film him; he said ‘yes,’” continues Zheutlin. This impetus, coupled with what she calls a desire to push the envelope of consciousness, led Zheutlin and her husband, Edis Jurcys, a brilliant photographer, to embark on the telling of these stories. Their exploration took them to Australia where they met a death walker, and to Bali where they saw a mass cremation. When the pair learned that dear friend Don was dying back at home, Zheutlin took “a deep dive into reflecting on death and grappling with the meaning of life.” The result is “Living While Dying.”

“This is territory that we cannot avoid,” said Zheutlin, whose work stemmed from a simple observation on her part: “So many people have so much to say [and yet] the conversation is mostly not happening.” The documentary project, a full five years in the making, catapulted her back into the world of professional filmmaking after a 32-year hiatus. She decided to pick up her camera and film four friends with terminal illnesses who chose to live out their days in hospice care at home. What ensues is a bold discussion of the inevitable, and one filmmaker’s attempt to remove the pall from a subject that, if considered from a different perspective, is but the final developmental stage in life — one to be revered and celebrated in much the same way as all those that precede it.

Jonnie Zheutlin’s partner, Clair Killen, near the end of his life.

“You can’t destroy energy, that became really clear to me,” recalls Jonnie Zheutlin of her own experience walking through end of life with her partner of 12 years, Clair. “I don’t actually fear dying,” is the elder Zheutlin’s stance on the subject. Jonnie took an OLLI class in Oregon called “Talking About Dying as If It Could Happen to You,” which she found to be both fascinating and on target — not to mention independent of her daughter’s project. This, coupled with Clair’s death, urged her on to further explore the subject. She recounts the first time Clair showed up, shortly after he died; she was looking out the window and, from the trees, this tape kept coming out. At first Jonnie thinks it’s a kite; she wonders what’s going on and then she has a realization: “The way it moved, it moved the way Clair danced — it was so clear, but I was frantic, I wanted someone to validate it,” she explains. From these experiences, a conversation between the mother-daughter pair has ensued.

“The advantage of having conversations when we are healthy is that, when we are in crisis, it’s not the time to begin thinking about all the various choices. And there are a zillion choices,” says Zheutlin. It’s the pre-thinking to support us along the way that Zheutlin hopes will inspire others to embark on a dialogue that, for many, is not welcome. In the documentary, Jonnie and her daughter model a conversation (Zheutlin is the film’s narrator) while Jonnie sits in a coffin. Zheutlin was conscious of her choice to model the conversation with her mother — who is very comfortable talking about her own EOL choices — in the presence of an image that was not terribly stereotypical. She felt the iconic images of individuals contemplating death while meandering through a cemetery to be too cliché. “That step of taking something scary and foreign and only associated with grief” proved liberating in her portrayal. She goes on to clarify: “I don’t think we should ever disassociate grief and death — it’s just that it’s not the only part [to be emphasized] because it’s natural. We somehow need to integrate it,” Zheutlin explains.

The film arises out of a grassroots movement — with titles running the gamut — that revolves around reclaiming death in much the same way baby boomers reclaimed birth. “They said, ‘let’s have our babies at home, [as] birth is not a medical event.’” Well, death isn’t necessarily a medical event, either. “Death is a natural thing that happens at the end of every single life. It’s 100 percent going to happen,” Zheutlin reminds her audience. But we don’t get to see the images of nonmedicalized death; this is where Zheutlin comes in. “Living While Dying” offers viewers a glimpse of what death looks like when one goes the nonmedical route and chooses hospice at home. “My experience is not prescriptive or comprehensive; everybody’s experience is going to be unique and important and worthy of being uplifted,” Zheutlin said. “I’m not promoting an ideology, I’m promoting a conversation,” she says of her intensely personal approach. One thing is certain: Death is somehow less scary after viewing this film. “It’s not articulated, but it’s felt,” Zheutlin explains. As for Jonnie Zheutlin’s last word on the topic? “I used to have cement in my mouth,” she says, borrowing a term she once heard a child use in her days as a therapist. “I am learning to verbalize; it’s taken me almost 90 years to learn to use my voice,” she jokes, adding “Thank God I’ve lived long enough to do that!”

Zheutlin’s film has been hailed as a brave and honest immersion in a difficult topic. In her director’s statement, she cuts straight to the chase: “Death is a teacher. Many of us are scared of death. We feel unprepared both for our own deaths and the deaths of people (and animals!) we love. Our associations with death are morbid, dark, cold, depressing, and laden with grief and pain. So we do not talk much about death. In modern times, we have medicalized the end of life, and disconnected it from nature. In trying to prolong life by any means necessary, we only succeed in keeping death shrouded in darkness. By keeping our distance from death, cloaking it, hiding our eyes from it, we actually lose touch with a sacred phase of life. Because, as we all know, death is a part of life — for all of us.”

Director-producer Zheutlin has been principal cinematographer on award-winning PBS documentaries including “The Life and Times of Rosie the Riveter,” “The Other Philadelphia Story” and the 1982 Academy Award nominee “See What I Say.” Her 1986 documentary “Just One Step: The Great Peace March” led to a co-production with Soviet TV about the first Soviet-American peace walk. In short, she has spent her career making films that explore consciousness and encourage progressive change. Her documentary “Living While Dying” was an official selection for the THIRD ACTion Film Festival, which celebrates aging and older adults while helping to create an age-positive culture shift. For more information, visit www.livingwhiledying.org.

Complete Article ↪HERE↩!

Posted on

What Is Normal Grieving, and What Are the Stages of Grief?

[G]rief is a natural response to losing someone or something that’s important to you. You may feel a variety of emotions, like sadness or loneliness. And you might experience it for a number of different reasons. Maybe a loved one died, a relationship ended, or you lost your job. Other life changes, like chronic illness or a move to a new home, can also lead to grief.

Everyone grieves differently. But if you understand your emotions, take care of yourself, and seek support, you can heal.

What Are the Stages of Grief?

Your feelings may happen in phases as you come to terms with your loss. You can’t control the process, but it’s helpful to know the reasons behind your feelings. Doctors have identified five common stages of grief:

  • Denial: When you first learn of a loss, it’s normal to think, “This isn’t happening.” You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion. It’s a defense mechanism.
  • Anger: As reality sets in, you’re faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general. To be angry with a loved one who died and left you alone is natural, too.
  • Bargaining: During this stage, you dwell on what you could’ve done to prevent the loss. Common thoughts are “If only…” and “What if…” You may also try to strike a deal with a higher power.
  • Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful, and lonely.
  • Acceptance: In this final stage of grief, you accept the reality of your loss. It can’t be changed. Although you still feel sad, you’re able to start moving forward with your life.

Every person goes through these phases in his or her own way. You may go back and forth between them, or skip one or more stages altogether. Reminders of your loss, like the anniversary of a death or a familiar song, can trigger the return of grief.

How Long Is Too Long to Mourn?

There’s no “normal” amount of time to grieve. Your grieving process depends on a number of things, like your personality, age, beliefs, and support network. The type of loss is also a factor. For example, chances are you’ll grieve longer and harder over the sudden death of a loved one than, say, the end of a romantic relationship.

With time, the sadness eases. You’ll be able to feel happiness and joy along with grief. You’ll be able to return to your daily life.

Do I Need Professional Help?

In some cases, grief doesn’t get better. You may not be able to accept the loss. Doctors call this “complicated grief.” Talk to your doctor if you have any of the following:

  • Trouble keeping up your normal routine, like going to work and cleaning the house
  • Feelings of depression
  • Thoughts that life isn’t worth living, or of harming yourself
  • Any inability to stop blaming yourself

A therapist can help you explore your emotions. She can also teach you coping skills and help you manage your grief. If you’re depressed, a doctor may be able to prescribe medicines to help you feel better.

When you’re in deep, emotional pain, it can be tempting to try to numb your feelings with drugs, alcohol, food, or even work. But be careful. These are temporary escapes that won’t make you heal faster or feel better in the long run. In fact, they can lead to addiction, depression, anxiety, or even an emotional breakdown.

Instead, try these things to help you come to terms with your loss and begin to heal:

  • Give yourself time. Accept your feelings and know that grieving is a process.
  • Talk to others. Spend time with friends and family. Don’t isolate yourself.
  • Take care of yourself. Exercise regularly, eat well, and get enough sleep to stay healthy and energized.
  • Return to your hobbies. Get back to the activities that bring you joy.
  • Join a support group. Speak with others who are also grieving. It can help you feel more connected.

Complete Article ↪HERE↩!

Posted on

A Burial Practice That Nourishes The Planet

Here’s a question we all have to answer sooner or later: What do you want to happen to your body when you die? Funeral director Caitlin Doughty explores new ways to prepare us for inevitable mortality. In this thoughtful talk, learn more about ideas for burial (like “recomposting” and “conservation burial”) that return our bodies back to the earth in an eco-friendly, humble and self-aware way.

 

 

Posted on

How Death Positivity Helps Me Mourn The Living

By: Lola Phoenix

[T]here are many ways that death has followed me throughout my life. I was born with my umbilical cord wrapped around my throat and a disability nearly caused my death several times as an infant. When I was three and I stopped growing, my growth hormone, before it was made in a lab, was taken from cadavers.

Fearing death dominated my childhood so much that I became extremely paranoid. Growing up with a gay parent and hearing about Matthew Shepard, I had to trust the friends I brought home into my life. Already having been bullied in school for supposedly being a lesbian, I didn’t want to give them any reason to escalate the harassment physically. While I know I’m not personally going to be targeted, the spectre of death is ever present.

But so much of death is about mourning people who have died, when, for LGBTQ people especially, there is a kind of death that is not really discussed, explored or acknowledged—the death and mourning of the living. Estrangement grief is a thing, and it’s complicated to mourn a person who is not dead.

“Death positivity” is about coming face to face with mortality and, instead of fearing and ignoring it, embracing it. I came across this movement through the “Ask A Mortician” channel on YouTube run by Caitlin Doughty, who is also behind the death positivity movement Order of The Good Death. Fundamentally, death positivity is about challenging the way our society views death and creating a culture that allows people to be more prepared and ready to make the difficult choices around death that they may be avoiding.

All around the globe, people have signed up to be part of The Order of The Good Death, and this may mean something as simple as taking an active interest in making end of life wishes to educating people locally about burial options to campaigning in local government for options such as water cremation, which aren’t available in all areas.

The process of becoming death positive is about embracing the realities that lie at the end of my life, it also has helped me embrace several lessons that have helped me live my life.

I am estranged from both of my parents: one of them disowned me and the other has mental health problems that make a relationship between us difficult. Other family members either don’t show very much interest in me or, when I have attempted to reach out for support, have either not responded or told me they were tired of “weird.” As someone who has always felt quite strongly about family ties, these losses were difficult to endure. But the lessons I have learned through death positivity have made them much easier to cope with.

1. Sadness is not shameful.

This seems obvious, but it isn’t. Part of death positivity encourages people to think about what choices they want for their bodies after death. That got me thinking about the complex way I’ve felt about funerals I’ve been to—how cold and incredibly formal they’ve felt and how awkward it was to express strong emotions in austere settings. I decided I didn’t want the people I left behind to feel how I felt. I wanted them to feel like being sad was okay. And in doing so, I had to tell myself that it was okay not only for the people who lost me to mourn, but for myself to mourn the people I have lost.

Estrangement isn’t always permanent, but holding on to the hope of change in many instances can end up causing more pain than it’s worth. It may seem on the outside that your estranged relative has more of a chance of coming back into your life than a dead relative, but that isn’t true for everyone.

Giving others the space to grieve helped me understand that it was okay for me to grieve. At least now when I mourn the loss of people in my life, I can accept that I have these feelings and not fight against them.

2. Grief and recovery aren’t linear.

In thinking about how I wanted to prepare as much as possible for my loved ones before I die so that they don’t have to stumble around in the process of grief, I had to come to understand it more. Despite the presence of death and loss in my life, there have been few family members I have actually felt sadness at losing. My mother was 18 when she had me and her mother was 18 when she had her, so I have a relatively young family. I lost my grandfather and step-grandfather when I was in high school, but I knew both of these men as abusers of my mother.

When they passed, I wasn’t even remotely sad. Many of my great uncles and aunts had passed, and I lost a second cousin to a tragic accident, but I didn’t have very close relationships with these people. It was when my great grandmother died in 2013 and I didn’t have the money to fly home and attend her funeral that I came face to face with my biggest loss.

One of Caitlin’s videos talks about the reasons people fear death, and one of them is the impact it will have on their loved ones. Much of what I suspected from both Caitlin’s videos and the crowdfunders I’ve contributed to for funeral costs spelled out the reality of the impact “traditional” funeral homes and their soaring prices can have on families. I had to understand that grief is expressed in so many different ways and it’s not as simple as “letting it go.”

In the case of my great grandmother, losing her felt so odd and numb that I had almost no emotion when I heard the news that she had passed away. She was 98 years old and the morning I got the news, I’d had a funny feeling that she was gone. Without having ever experienced a massive loss, I didn’t at the time know what was normal. And I secretly felt ashamed that I hadn’t shed many tears, though I told nobody.

Years after her death, I was trying to recall how she made biscuits every Sunday morning for breakfast. My mind walked through the process of her pouring flour and lard on her biscuit pan, but there was a lot I couldn’t remember. When it occurred to me that I couldn’t ask her anymore, something broke in me and I finally cried. After being active in Death Positive communities, I knew and understood that grief wasn’t linear and that sometimes the sadness comes and goes when it wants.

Likewise, I stopped telling myself to “let it go” when I was grieving estrangement from my parents. When you experience a loss, you have good days and you have bad days. Thinking about my own death and preparing for it meant thinking about what my loved ones would go through in their grief. I would never expect them to just stop feeling their feelings, so why should I expect my feelings to suddenly go away?

3. Celebrate the time you have.

The Order of the Good Death may sound very morbid and odd to some. But in her videos, Doughty points out that “the good death” is not about failure if you don’t plan, but about the idea that avoiding conversations about death ultimately means much more hardship than addressing it at all.

Facing my own mortality in a healthy way encourages me to actually take advantage of the time I have. When death becomes something that moves from being in the unknown, terrifying and looming but never addressed to being looked at, planned for, and understood, that also means that you’re more likely to take advantage of life.

Loss and grief become part of the process of death and equally part of the process of life. When I learned to address the fact that all life will end including my own, it felt easier to for me to cope with the idea that several of the relationships I once valued and held dear in my life were also at an end—and that’s okay. And what’s more, it’s helped me appreciate what time I do have and know not to waste it on people who hurt me or don’t respect me for who I am.

Death positivity may sound like a bizarre notion, especially as a queer person and a disabled person fighting in many instances to stay alive. It’s not about wanting to be dead. It’s not about being happy about dying. But it’s about facing the reality of death in a way that isn’t the paranoia and fear I’ve had sit heavy on my shoulders.

And doing so has helped me cope with what a lot of other people like me go through when we lose a family member either because of our own identities or because of their inability to accept and see us for who we are in a loving and positive way. Reckoning with the face of grief and mourning has given me tools to use to cope with a different but also painful kind of loss.

Because I embrace the fact that I will die, I live better.

Complete Article ↪HERE↩!

Posted on

Will your life end well? An Oscar nominee and palliative care advocate on what’s new in death

Shoshana Ungerleider, founder of the End Well symposium and the Ungerleider Palliative Care Education Fund

By

Shoshana Ungerleider is a leading palliative care advocate as well as a practicing physician at California Pacific Medical Center in San Francisco. In her work as an activist and educator on end-of-life issues, she’s been focused on creating a more human-centered approach to how we die. To this end, Ungerleider has started a philanthropic organization dedicated to education about end-of-life issues, launched an annual symposium on the end-of-life experience called End Well, and helped produce documentary films on the subject, including the Oscar-nominated Extremis and End Game, which was released on Netflix earlier this month. The Business Times spoke to her about what’s behind her passion for palliative care and how a better understanding of death is essential to a better health care experience.

As an internist who works in a hospital, how did you first get interested in palliative care?

Sort of the weird thing is that I never set out to be any kind of advocate for end-of-life issues. But really early on in my residency, I experienced so many patients in the ICU who were dying of lung cancer, of liver disease, of end-stage something and I realized that nothing that we were going to do was really going to reverse their age or their underlying medical problems. But nonetheless we were still kind of doing things to them because we could and not because we necessarily should. It turns out that far too many people spend their last moments of life suffering. They’re in pain. They’re hidden away from their loved ones. And to me it’s coming down to the fact that we’re not doing as a job both as health-care providers but also society at large of having honest conversations early and often about what matters most to us.


 
Are there generational differences in terms of people being open and comfortable about conversations around death?

Millennials are, for whatever reason, really open and honest about mortality and making sure that they get what they want and have some autonomy. There’s a similar thing with baby boomers interestingly, really wanting to have a say and maintain control. There are organizations like Death over Dinner in Seattle, where they kind of helped you curate and facilitate a conversation around the dinner table with friends, family or loved ones. Also, The Dinner Party, which is another group founded by some young women who lost their parents which is more focused on grief, and loss, and creating an open conversation around their table. So it’s fascinating to me just how much innovation is happening around this seemingly very taboo topic.

Many doctors feel that death is ultimately a treatment failure. But have you seen an evolution from the physician and provider side when it comes to end-of-life care?

There’s been, over the last 15 years, a shift in medical education. So people are realizing that teaching doctors how to have hard conversations is really critical. We need to be doing more of it and there needs to be sort of core academic competence models coming out of our national accrediting bodies that haven’t happened yet. But the field of palliative care is brand new. It’s only been a specialty that’s been board certified since 2008. There has been a radical shift in the last 10 years to now being a very much more popular field. They talk about it often and medical students and residents are much more open to the idea that doctors still have a place in healing, even when a cure is no longer an option.

One of your stated goals is to make the end-of-life process more human-centered and less clinical, cold and impersonal. What role is technology playing in that shift?

There’s a few apps out there that are really helping to facilitate advanced care planning, meaning the kinds of documentation and discussion that need to take place to make people’s end of life care preferences known, like Cake out of Boston. There are also a few entities researching the use of virtual reality in terms of both therapeutically helping to treat pain and anxiety, but also for recreational use. So some places in Canada and the UK are specifically using it for patients who are in hospice and want to mark things off their bucket list. So while they can’t travel but they might be able to experience Niagara Falls or go climb Everest virtually.

Are there things that American culture regarding death can learn from other places around the world?

It’s really interesting because everybody always asks if there are countries or societies that do this well, and the answer to that is no. Nobody has figured out the best way to support patients, to support families, to think about caregiving from a civic perspective. The one really interesting case study that I always point to when I talk about this is La Crosse, Wisconsin. It’s a town of about 50,000 people where one leader in the community decided that he was going to make his hometown just like a great place to die. How he went about this was in the mid-2000s he figured out a way to really encourage people to do a lot of advanced directives, so that it became just a commonplace thing. In 2009, something like 95 percent of the people that died (in La Crosse) had filled out an advanced directive. In the United States we have 10,000 baby boomers turning 65 every day. Never in the history of our country will so many people die in such a short time span, so it behooves all of us to start thinking about innovative solutions to caregiving.

So you’re probably the person I’ve talked to who’s thought about these issues the most, how has your perception of your death had changed?

Something sacred is happening. You get to see a very intimate window into someone’s life and really the mystery of what binds us together as human beings. For me, being reminded of my mortality makes my life sweeter. It’s more rich when you know that one day it will end.

Complete Article ↪HERE↩!