Tag: Conscious Dying

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Top Websites Raising Death Awareness

By TalkDeath Team

[I]t’s hard to talk about death without going into the history of it. We’ve talked endlessly on this blog about the ways in which death has changed and evolved over history. We once knew death intimately: we washed the bodies, buried them ourselves and mourned openly and loudly. However today we are, as some scholars would say, largely a death denying culture. The tides are changing and while the chances of us handling the bodies of our loved ones are slim, our awareness of death and dying has been on the rise. Fuelled by popular books, movies, TV shows and personalities, death and death positivity are on the minds of many people. To help foster this much needed change, we present to you the top 8 websites promoting death awareness!

Top Websites Raising Death Awareness

8. Modern Loss

Modern Loss is a place to share the unspeakably taboo, unbelievably hilarious, and unexpectedly beautiful terrain of navigating your life after a death. Beginners welcome. This should say everything you need to know about this wonderful and informative website started by Rebecca Soffer and Gabrielle Birkner. Filled stories of grief, mourning and death acceptance, Modern Loss is a repository of stories, essays, resources and information about dealing with loss and picking yourself up again!

7. What’s Your Grief

Founded by mental health professionals with 10+ years of experience in grief and bereavement, WhatsYourGrief.com is an excellent resource for anyone dealing with the loss of a loved one. Grief is a complex emotion but one that is completely natural. Rather than try and rush of process of bereavement, WYG encourages their readers to work through their feelings in positive, long lasting ways. Well written blogs, grief resources, how-to’s and more.

6. Connecting Directors

Interested in a first hand account of life in the funeral business? Connecting Directors is a great place to start. It is a collection of news, blogs, articles and marketing information tailored to the funeral profession. While some of it may not be relevant to your interests, there is a lot of great information there(plus we are featured there quite often **cough cough**). Started by Ryan Thogmartin, this website reaches thousands of death professionals and gathers articles from a number of sources.

5. Death Cafe

We couldn’t be bigger fans of Death Cafe! While the internet portion of Death Cafe is only secondary to the actual events, it is a great place to connect with a death positive community. Death Cafe’s are informal meetings that happen all over the world where people get together and talk about life, death and everything in between. Chances are there is a local Death Cafe chapter in your city(and if not, you should probably start one). We have been to two events held by our local Death Cafe and they were incredible! Expect tears, laughter and the unexpected.

4. Death & the Maiden

A newcomer relative the rest on our list, Death Maidens is important for several reasons. First, it is connected to growing death positive/death conscious movement. Second, it highlights the important, historical and growing role that women have played vis-a-vis death and dying. We often forget that women before the 20th century played vital functions in death. They washed and dressed bodies, they were the public face of mourning and they knew death in a way that few of us do today. We are really looking forward to some great and informative content!

3. Confessions of a Funeral Director

It would be no exaggeration to say that Caleb Wilde is almost a household name. People who are in no way connected to the funeral profession know his website and share his content. A 6th generation funeral director and prolific blogger, Caleb started Confessions of a Funeral Director as a window into the death profession. His blog runs the gamut from humour, memes, short stories, advice and of course, secrets from the world of funeral directors. A must read for anyone interested in death awareness!

2.  The Order of the Good Death

Founded and run by Caitlin Doughty, The Order has grown to become much more than a simple blog/website raising death awareness. The order now hosts dozens of members from academics, morticians, funeral directors and artists and is filled with both written content and video content. Caitlin’s well known YoutTube channel, Ask a Mortician, is an informative and hilarious video series. The Order now also runs the largest death positive meet-up in the world, Death Salon. Be careful though as you could get lost for hours on The Order’s website!

1. Death Reference Desk

The Death Reference Desk is run by professor John Troyer, Deputy Director of and a Death and Dying Practices Associate at the Centre for Death and Society at the University of Bath and Librarians Meg Holle & Kim Anderson. Pulling from their knowledge and experience, the goal of the DRD is to inform the casually interested and morbidly curious alike about All Things Death: the bizarre, the batty and the beautiful, from interesting blogs and recommended books to commentary and analysis of death in the news. This website is an incredible resource for anyone interested in almost anything related to death and dying and best of all, you can ask John, Meg & Kim any question and they will answer them on their website! 

Complete Article ↪HERE↩!

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What Is Day Of The Dead, And What Can It Teach You About The Grief Process?

The Mexican holiday has nothing to do with Halloween, but lots to do with normalizing death.

By Kelly Burch

[T]his summer, it seemed like death was everywhere. In the course of a few short weeks I had a miscarriage and watched my dog be struck and killed as we walked down our dead-end road. Two weeks later, my aunt unexpectedly passed away in her sleep.This trio of tragedies would have left anyone reeling, but I realized that I was hurting deeply in part because I didn’t have an adequate vocabulary to talk about death. This was especially evident when I tried to answer questions posed by my 3-year-old daughter, who kept inquiring about our dog and her great aunt for months. I wanted her to understand that death was normal and even expected, but I was having a hard time remembering that myself. (Here are 5 reasons you should talk about death, even if you don’t want to.)

And then, by chance, I stumbled upon information about Dia de Los Muertos—Day of the Dead—and I was captivated. Day of the Dead is most commonly celebrated in Mexico, although other South American countries celebrate as well. It’s believed that spirits arrive on October 31 and leave on November 2. November 1, however, is the main day of celebration, and the day most commonly referred to as Day of the Dead.

Most Americans, if they have even heard of the holiday, associate it with Halloween and colorfully painted skulls. But despite the coincidental timing, it’s really a fun-filled but complex acknowledgement of death as part of life, and it combines the Catholic All Saint’s Day with indigenous traditions and beliefs.

People who celebrate it believe that, on and around November 1, spirits can easily pass between our world and the afterlife. Families might set extra places at the table, exchange stories, and prepare gifts for their deceased loved ones. But mostly the day is about fun, since many people believe spirits would be insulted if they came back to find everyone in mourning.

This seemed vastly different from how many Americans view life, death, and grieving, so I wanted to learn more. It turns out there’s a whole lot that we could all learn from Dia de Los Muertos about the grief process.

Death is a part of life.
I’ve always thought of life and death as opposites. However, Day of the Dead celebrates death as a part of life, rather than the end of it. And recognizing that life and death go hand-in-hand can ease the grieving process, says Kriss Kevorkian, PhD, an expert on grief.

“Day of the Dead connects life and death in a way that, generally speaking, Americans don’t often do,” says Kevorkian. People who celebrate it realize that their loved ones are still present in their lives, even if they aren’t physically there. “You’re not taught to believe that once your loved one dies that’s it.” By normalizing death, the grieving process also becomes normalized and less of something to fear.

A relationship doesn’t end just because someone has died.
“The first chapter of grieving is really recognizing that someone is gone from this world, and your relationship with them is changing” rather than ending, says Tracee Dunblazier, a spiritual empath and grief counselor based in Los Angeles. Whether you believe like Dunblazier does that it’s possible to communicate with the dead, or you merely believe in keeping them alive through memories, recognizing that some sort of relationship can be maintained can be very healing.

“When you think of death as final, you’re looking from a specific sliver of a perspective that does not show the whole story,” Dunblazier says.

Grief doesn’t follow a strict timeline.
When someone you love dies, everyone expects you to struggle—but only for a little while. The problem, of course, is that people don’t heal on schedule, and sometimes it takes months or even years to “move on,” especially after someone passes unexpectedly. This idea is known as complicated grief, and Western cultures usually view it as something to treat (perhaps with therapy and/or antidepressants).

Cultures that celebrate Day of the Dead, however, don’t try to force a sense of closure. Having a holiday that acknowledges the presence of the dead can make complicated grief easier to address, particularly on November 1, when the spirits are thought to be nearby. Believing that your loved ones can hear and understand you on this holiday means that you have the chance to say anything that was left unsaid before they died, says Merrie Haskins, a counselor and psychotherapist based in Minnesota.

Funerals (or at least memorials) can be fun.

In America, death is a very somber event. We wear black to funerals and talk in hushed tones. However, anyone who has ever listened to a lovingly-delivered eulogy knows that smiles and laughter are an important part of the grieving process. Although South American cultures have sad funerals as well, they incorporate happiness and fun into Day of the Dead to honor their loved ones in a more spirited way. That’s something that’s not common in American culture. (See how these 3 alternative therapies can help heal your grief, according to Prevention Premium.)

“We don’t usually have a celebration with levity, happiness, song, and dance,” says Shoshana Ungerleider, MD, chair of the End Well Symposium, an organization that focuses on quality end-of-life care. “People who celebrate the Day of the Dead take this lightness very seriously, due to the belief that spirits who come to visit would be insulted if they found everyone in mourning.”

Haskins suggests adopting that focus on fun as a way to celebrate your loved ones. For example, each year she attends an Academy Award viewing party given in honor of a particular deceased family member who used to love watching the awards show. “That makes it fun for us to remember her and for new people to get to hear about how wonderful she was,” she says.

Stop fearing death, and your own death will be better.
Everyone dies, but many people are too terrified to think about it—to their detriment. “In America, we often shy away from talking about death, loss, and grief. As a physician, I see many gravely sick people in the hospital who have never considered what they want at the end of life,” Ungerleider says. As a result, their final days can be stressful for them as well as their families, because everyone is struggling to make decisions that align with their beliefs while simultaneously dealing with the grief of imminent loss.

A celebration like Day of the Dead can make people think about their own death and plan for what they want at the end of their lives. “By accepting and discussing openly that death is a part of life, you make sure you receive the care you want.”

Complete Article ↪HERE↩!

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A Checklist Before Dying

By

[I]n early 2015, my mom was in a car wreck. She sustained extensive injuries and died two weeks later. I was 35 at the time, surrounded by chaos, and had no idea what I was doing.

You hate to look on the bright side of life-altering tragedy, but I’m still so grateful to my mom for having her affairs in order. Because her accident was so sudden, it took a few days to locate her end-of-life documents. Once we did, it felt like there was a shift in my brain chemistry. We now had guidelines to help us respond to this terrible, traumatic event.

A lot of people believe it’s too difficult or macabre to think about, much less plan for, your own death. But confusion, exhaustion, and terror are the norm in the wake of enormous loss. Planning ahead helps reduce your family’s stress when they’re already in their own personal hell.

If you have a contentious relationship with your family of origin, it’s extra important for you to draw up wills and other relevant legal documents. If something terrible were to happen to you, somebody you don’t like or respect but happen to share blood with may have more say than the people who are actually important to you. Paperwork can help prevent that.

Here is an overview of how to prepare for the (inevitable) worst:

Your Last Will and Testament

Most of us learn about wills from television, though I’m not sure there’s actually ever been a dramatic scene immediately after a funeral where a lawyer sits down with a bunch of people and parcels out the deceased’s belongings.

A will serves two functions:

  1. To appoint an executor of the estate
  2. To express the deceased’s wishes about distribution of assets

It doesn’t matter how much or how little a person had in this world. When they die, their assets and debts become the property of “the Estate of [Deceased Person].” An executor of an estate is the person put in charge of making sure the estate is handled properly—which does sometimes come down to parceling out the deceased’s belongings.

You should know that, even if you say “please leave all my money to these people or this organization,” if you die with a bunch of debt, it’s likely the debt will have priority over your wishes.

A durable power of attorney

This document outlines how incapacitated you have to be to let some (specific) person handle your money. Even if you don’t want anyone else to touch your money, consider the logistics; setting up a power of attorney lets someone else sign checks to pay your light bill or rent, for example, without technically committing fraud. (We always forget about the little stuff.)

You have to specifically appoint a person for this role. Once you die this document ceases to be of any value and the executor of your estate takes over.

Your medical directives

This document lays out the manner in which you wish to live vs. do not wish to live. These documents vary massively by state. In general, states with Right to Die laws will have more much more detailed requirements. If you draft a medical directive in one state and then wind up becoming grievously ill or injured in another state, they should still honor the spirit (if not the letter) of this document.

I did mine in Oregon. It’s a three-page list of yes/no scenarios. You have to consider your own mortality, but other than that, it’s really not that daunting. All you have to do is express what you’d like to happen to you, should the worst happen.

You have to specifically appoint a person to execute your medical directives as well. A doctor will not look at this document and enforce it based on their own judgments about your condition. So make sure the person you appoint to do this is someone who understands your wishes and respects your values, because this document will empower them to either enforce or override your choices.

An estate attorney

A will, a durable power of attorney, and a medical directive should all be drawn up with a lawyer. The people that specialize in this area of the law are called estate attorneys. The estate attorney should be able to tell you upfront how much it will cost to draw these documents up and a lot of times you can work out a payment plan with them.

This attorney will keep a copy of each of these documents in their files. You should also keep copies in a safe place that other people know about and can access should you be in a medical crisis and unable to communicate. It may also be wise to give copies to the people who have appointed roles in your end-of-life documents.

Life insurance

You should have life insurance if you have any outstanding debts or dependents. My understanding is that your life insurance should equal your debt + five years of your salary + your child’s/children’s estimated college tuition, but do your own research on what’s best for you—and do some research on which of your debts are forgiven in death and which are not.

If you have no major debt and no dependents, you could skip the life insurance part, but keep in mind that life insurance beneficiaries can also be parents or other relatives, all of whom could probably use the money—especially if they are anticipating support in their retirement years and/or paying for the cost of your funeral.

Love letters

Any final lovely words you want to write to the wonderful people in your life? Better yet, any petty stuff you want to make sure you get the legit last word on? Write it in a letter, seal it in an envelope and keep with the other documents.

Lists of accounts, important contacts, assets and debts

Accounts: A list of all your credit cards, checking and savings accounts, including where they’re held and branch information if necessary.

Important contact info: The attorney who helped draft your legal documents, your doctor, your health insurance, your pet’s veterinarian, etc. If someone had to suddenly take over your whole life, what do they need to know?

Assets: Retirement accounts, a 401(k) program at your work, any property you might own (with the mortgage holder listed), savings bonds, certificates of deposit, etc. You can leave out the account numbers if you have privacy concerns; what you’re really doing is making a road map for whoever will be handling your affairs.

Debts and bills: Student loans, credit cards, mortgages, auto loans, etc. Don’t forget your rent, utilities, subscriptions, child support, memberships, and donations that auto-renew. List every single thing that bills out of your account monthly, quarterly, annually.

Update this information every time you change your clocks and put the revision date at the top. (Also, change your smoke alarm batteries while you’re at it.)

Funeral preparations and preferences

You can get as specific as you want with this, but at the bare minimum let people know if you want a burial or cremation and where you want your remains to go. (Especially if you come from a large family or if there are any religious or cultural differences to consider.)

Obituary draft

Obituaries have to be filed for a few reasons. Many states have public disclosure laws for debt collection that require an obituary. Also, people might want to come to your funeral (or at least know you died) who aren’t in your immediate social and family circles. Draft a super basic obituary that includes where you were born along with the names of your parents, siblings, children, etc. A few broad strokes about your life, where you went to school, worked, what you enjoyed doing, etc.

It’s going to be painful for your loved ones to write about you in the past tense, so giving them a rough draft can be very helpful—especially because the obituary usually has to be written immediately  after a person’s death.

Make sure people know where this stuff is!

Keep it somewhere secure. But let the right people know how to access it. A fireproof safe in your house? Make sure someone knows where the keys are. A safe deposit box? Make sure someone else has access to it. In a folder on your laptop labeled “Death Prep?” You’d better give someone else the password and the file path. Under the floorboards? Whatever, just make sure people can find it and have access to it if you are suddenly incapacitated.

Final note

The less mess you leave for someone to clean up, the less you’ll complicate the grief for people who love you. All the secrets you have stashed around your life? Someone has to clean that up. Know that the dead have zero privacy; all of your porn, medical history and drug habits will be 100 percent somebody else’s business now. Appoint an executor who has some chill, and good luck in the next plane of existence.

Disclaimer: I’m not a lawyer, nor a financial advisor. I’m terrible at math and I hate dealing with people. This is not professional advice and you should definitely pay an actual grown-up $200/hour to explain how the basic tenets of our society functions because your pain, fear and confusion is the grease that keeps the ruthless machine of capitalism churning. Above all, do not sue me if you mess up your own life!

Complete Article ↪HERE↩!

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Dying a good death—what we need from drugs that are meant to end life

There are a few drugs that can end life, and how we want to die should be considered.

by And

[G]enerally speaking, health care is aimed at relieving pain and suffering. This is also the motivation behind euthanasia – the ending of one’s own life, usually in the case of terminal illness characterised by excruciating pain.

There has been debate in Victoria about the drugs that should be used to end life if euthanasia is legalised. So which medications can we ensure would facilitate the best, medically-supervised death?

Medicine as poison

When it comes to the question of which medicines can, or even are meant to, kill us, the most important thing to remember is the old adage:

“The dose makes the poison.”

This concept is one on which the whole discipline of toxicology and medicines is founded. This is the meaning of the well-known symbol of the snake, wound around the bowl of Hygeia (the Greek goddess of health), representing medicine, which you see in pharmacies and medical centres around the world. The intertwining of poison and is a longstanding concept in the therapeutic use of medicines.

This is a very intricate science, and the reason we conduct clinical research. We need to trial different doses of new drugs to meticulously establish a safe but effective threshold for use.

In more practical terms, this means too much of any medicine can cause harm. Take, for example, the humble paracetamol. When taken following correct guidelines, it is a perfectly safe, effective pain killer used by millions of people worldwide. But taken in excessive quantities, it can cause irreparable liver damage, and if the patient is not given an antidote in a hospital, could lead to death.

What drugs are used in assisted dying?

The group of drugs most commonly used to end life is called the barbiturates. They cause the activity of the brain and nervous system to slow down. These drugs, used medicinally in small doses, can be taken short-term to treat insomnia, or seizures in emergencies. In different doses and administration techniques, these preparations can also be used as anaesthesia, to make us sleep through surgery.

An overdose of barbiturates is fatal. A large dose will effectively make the brain slow down to a point where it stops telling the body to keep the respiratory system working, and breathing ceases.

Both secobarbital capsules and pentobarbital (usually known as the brand name, Nembutal) liquid – (not to be mistaken for epilepsy medication phenobarbital) have been used either alone or in combination for physician-assisted suicide or euthanasia. They are also used in injectable forms for animal euthanasia.

These two products are tried and tested, have the advantage of years of use with the benefit of knowing the exact dose range needed, and with few adverse effects reported (such as unexpected pain, drawn-out death or failed death).

Their safety and efficacy in inducing a peaceful, swift and uneventful death has been proven around the world. They are the preferred drugs in the Netherlands, Belgium, Switzerland and some USA states where euthanasia is legal.

Other options exist, whether in combination or alone, but have limited evidence of use in euthanasia. Some drugs that cause excessive muscle relaxation and respiratory distress can end life, as can some pain killers commonly used in palliative care.

Drugs can also be used that fatally lower , cause heart attack, or block messages from the brain to the muscles, causing paralysis.

While all of these drugs are legally available in Australia, they could cause a long, protracted , with many more side effects that could cause distress and suffering at the end of life. Nembutal and its relatives are less likely to do so, with greater evidence from international practices than any other drugs that can end life.

The ‘best’ death

In Australia, Nembutal and secobarbital can be used for animals, but are illegal for human use. This makes implementation of the newly proposed euthanasia law in Victoria slightly more difficult. The proposed legislation does not seek to legalise the use of Nembutal and its relatives – but suggests a “drug cocktail” be concocted by a compounding pharmacist.

The Victorian government has reportedly approached Monash University’s pharmacy department to research the kind of pill that could be developed if the legislation passes. Therefore, no final description of this product has been released.

Some have suggested the mixture will be in powder form made with to induce a coma and eventually cause respiratory arrest. It may also use sedatives and muscle relaxants, a drug to slow down the heart, and an anti-epileptic to prevent seizure and induce relaxation of muscles. The constituents and doses are yet to be determined.

It’s difficult at this early stage to predict how this concoction would work and whether it would be easier or safer to use than drugs already tried and tested. This proposed product would need to be tested and results compared, as all are.

What is needed is a or a mixture of drugs that produce a painless, relatively quick and peaceful passing. We do not wish to see further suffering in the form of seizures, prolonged distress and pain. If no solution is certain, it would be wise to fall back on simply legalising what is already tried and tested.

Complete Article HERE!

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New study looks at end-of-life decision making for people with intellectual disabilities

by Bert Gambini

 
[A] new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

Complete Article HERE!

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The G-Spot: A Good Death

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

-Dylan Thomas

By

[A]s organisms that fight for survival, just as other organisms on the plant, a fear of death is built into our psyche. We write about it, we sing about, and Woody Allen obsesses about it. Throughout the ages, civilizations have created various deities to try to explain our origin, our purpose, and our fates when our bodies fail us. As science has evolved, we have learned to worship technology as a new deity that may protect us from aging and our ultimate demise. Despite our growing medical technology, life still has a 100-percent mortality rate. Someday, you are going to die.

Our medical technology sometimes gives us false hope. We pray to the false gods of machines and newer and more expensive pharmaceuticals to stay our execution, often without the thinking about the financial and emotional costs. As a society, we need to be good stewards of resources, as these resources are not infinite. Money that is spent on futile health care could be better used for other things such as alleviating homelessness, treatment for substance use disorder, or perhaps ensuring that every American has a cell phone. What is often overlooked in this discussion is the burden of suffering.

When you are admitted to the hospital, you will often be asked your wishes as far as resuscitation. If you are a 46- year-old otherwise healthy person who is having a heart attack, the answer will almost always be to do everything possible to resuscitate you. If you are 102 years old with dementia and a massive stroke, the answer will probably be to allow natural death. In fact, if I’m the doctor for the latter, I would not ask the family their wishes; I would tell them that it would be medically futile to attempt resuscitation and would only prolong suffering.

In discussing the end of life, the trend over many decades has been toward less paternalism and more autonomy. We encourage living wills and we try to discuss these issues with patients ahead of time. When I was a medical student in an academic university, the discussion was never IF we were going to resuscitate, but what fluids, what size endotracheal tube, and how many medical students could practice procedures before we called the code. Now we are trying more to give the patients and families their opportunity to decide within the setting of their values.

One of the ethical dilemmas in medicine is the balance between autonomy and beneficence. In the United States, we greatly value autonomy in medical decision-making; your ability to make your own decisions about your life, including health care. Built into Western medicine is the idea of informed consent. I offer you medical options and you can choose to take a medication, undergo a procedure, or try your favorite essential oil. I inform you of the options, and make recommendations, but autonomy says that you get to decide if you prefer lavender or vanilla.

Beneficence is a stronger force in other cultures, but it is also ingrained in our medical culture. Beneficence is essentially when your clinician is deciding what is best for you. The opposite is maleficence, the act of committing harm, which every physician swears an oath not to do. If there was no beneficence in medicine, you could walk into your neighborhood pharmacy and get OxyContin, Adderall, Xanax, and a side of cocaine by request. I practice beneficence over autonomy regularly by telling patients that certain controlled substances are not in their best interest, or declining a patient’s request for an unnecessary CT scan because the risks of radiation outweigh potential benefits. It is also beneficence when I place a patient on a psychiatric hold because I feel that they are in imminent danger of harming themselves.

When discussing end of life care with patients, health-care professionals must balance these two ideas. Many providers are uncomfortable with these discussions, and often begin and end the discussion with, “Do you want everything done?”

Well, who doesn’t want everything done? The logical converse is putting someone in a corner to be ignored as they gasp for breath. In reality, there is plenty that can be done at the end of life. Medical school focuses on the diagnosis and treatment of disease, but often falls short in discussions of palliation of symptoms. I do not like the term “do not resuscitate (DNR)” as it implies that we are withholding care. In fact, what we are doing is changing to focus of care to allow natural death and palliation of pain and anxiety. We have many treatments available for symptoms at the end of life and I minimize the suffering of my dying patients.

What happens when the family and the provider are not on the same page? Just like most areas of human interaction, the key is communication. I was the chair of the bioethics committee at a community hospital for two years and the vast majority of ethics consultations were regarding end of life care. In almost all of these cases, the issue was resolved by compassionate, open communication. Physicians are often frustrated by patients and families who have unrealistic expectations. Unfortunately, we also put the burden on families in the name of autonomy. I have seen many families struggle with the decision of whether or not to attempt resuscitation for a loved one, and it is evident that they fear the guilt of making the wrong decision. I often then put that burden on myself and give them an opportunity to object by saying things such as, “resuscitation is unlikely to provide a meaningful recovery and likely to cause suffering so I recommend if she stops breathing or her heart stops that we allow a natural death.”

This often assuages the family’s guilt as I advise them what I think is best.

Since death is inevitable, the decision is really the balance between extending quality life and suffering. If I extend your life, but during that time you are unable to communicate and have to endure painful procedures, I have not really helped you. However, if those painful procedures will then return you to a life that you consider meaningful, I have done some good. Although I cannot see the future, I can predict the likelihood of a good outcome based on your prior health, function, and the nature of your current illness. All too often I see someone with severe dementia who is bed-bound with a feeding tube undergoing painful procedures that will inevitably only prolong suffering. Ethically, I think that is doing harm.

According to medical ethics, clinicians should not offer futile care. I see it happen in the name of autonomy or misguided fears of litigation. I do not offer feeding tubes to patients with dementia who stop eating because there is ample evidence that it does not prolong life and it does increase suffering. Those of us in healthcare need to remember that we are the experts and we should first do no harm. Those of you who are involved in these decisions need to ask your medical providers these difficult questions. Ask your physician, “If this were your mother, what would you do?”

Most of the deaths I see are predictable. As we age and deal with illness, we should not fear death, but plan for it. Death is a natural part of life, and will occur whether we are ready to accept it or not. Several studies have demonstrated that physicians are more likely to die at home and less likely to have aggressive surgical procedures at the end of life. Our patients should have the same consideration and be allowed a dignified death.

Speak with your family about your wishes and their wishes. If you have a family member with a serious chronic illness, don’t wait until you’re in the emergency department and frightened and someone is asking you if they should “do everything”.

We will all die some day and if we are prepared, we may be able to die well.

Complete Article HERE!

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De-Medicalizing Death

By Jessica Nutik Zitter

[T]here’s been an unexpected, and excellent, consequence to California’s new medical aid-in-dying law. For many terminally ill patients, immersion in the process of securing lethal drugs ultimately renders them unnecessary. How did this come about?

Passed by the California legislature in late 2015, the End of Life Option Act allows physicians to prescribe a lethal concoction of drugs to some patients with terminal illnesses who meet certain criteria. The law, commonly described as providing “medical aid in dying,” took effect on June 9, 2016. It stipulates only that the requesting patient be considered terminal (less than six months away from death), possess full decision-making capacity, and be physically able to self-administer the life-limiting drugs. Although the physician is obligated by law to inform the patient of alternative care options, such as psychological counseling or symptom management with palliative care services, there is no direct requirement that the physician arrange or provide them. In its barest form, the option can serve as a dispensary for life-ending medications.

California’s medical community was taken by surprise by the rapid passing of the law in late 2015. It came on the heels of the dramatic case of Brittany Maynard, a young woman with terminal brain cancer who elected to move from California to Oregon to access medical aid in dying under that state’s Death with Dignity Act. Hospital systems and physicians in California suddenly found themselves with an urgent need to rapidly formulate policies around this new right of patients. Some, such as the Catholic Health Systems, opted out on religious grounds. Others scrambled to put basic policies in place for patients who met inclusion criteria. And some institutions decided to put significant time and resources into supporting this new legal reality in the most comprehensive way possible.

One standout example is the University of California, Los Angeles (UCLA) Health Centers. After literally thousands of hours of discussion, the working group determined that the intake process for patients requesting medical aid in dying should be conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians. Dr. Neil Wenger, director of the UCLA Health Ethics Center, led the effort to create processes and infrastructure to respond to this law. “We wanted to be able to offer a service that doctors tend to gloss over,” he said, when asked why they chose to lead with talk therapy. The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

The intake questions explored goals of care, quality of life, and patients’ emotions around their impending deaths: Were they ready? What scared them? What made them anxious? Did they feel their lives were complete? What did they feel makes life meaningful? What decrements in quality of life are too great? What haven’t they said and to whom? Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

Ours is a culture that does not talk about death, even when it should be impossible to ignore. Despite the fact that 89 percent of people think that it is a doctor’s responsibility to discuss end-of-life care with their patients, in reality, only 17 percent of patients report having had such a conversation, according to a 2015 survey from the Henry J. Kaiser Family Foundation. As a doctor who practices both critical care and palliative care medicine, I have presided over thousands of deaths. Most of my patients have suffered with chronic illnesses for years: metastatic cancers, failing lungs, and progressive debilitation from dementia. And yet almost none of them have discussed their own death with their doctors, or even their families. Most have no idea that they are actually dying. In this culture that operates on a fantasy of immortality, with unrealistic promises made by television shows and advertisements, doctors see themselves as failures if they are unable to cure their patients. We physicians are trained to lead patients into battle after battle, into the next procedure or intervention, banking always on that magic pill or miracle cure.

This broad cultural unwillingness to acknowledge death results in a phenomenon I call the “End-of-Life Conveyor Belt,” where high-tech treatments are automatically attached to bodies as they progress through the stages of dying. As the baby boomers age and our treatment options blossom, more are being exposed to the suffering brought about by these protocols. The tremendous anxiety we see over loss of control is understandable. It is no wonder that people in many states have asked for, and finally won, the right to take back that control with a pill.

The effort by UCLA Health seems to be working. Placing highly trained psychologists and clinical social workers in the critical role of “first responder” to a patient’s request to hasten death has rendered many of these requests obsolete. In choosing this approach, UCLA is effectively “de-medicalizing” the experience of dying by prioritizing the need for deep reflection. In this way, the program provides patients with an option that doctors are not primarily trained for.

Patients requesting support to hasten their deaths are only a small subset of the population of the dying. They are in some ways canaries in a coal mine, their request for medical aid in dying is alerting us to the unmet needs of the wider population of dying patients. And what I am seeing is that our new legal responsibility to steward these patients responsibly through this rocky terrain will build practices and skills that will help all of those at the end of life.

Where goes California, thus goes the nation. California was the fourth state to legalize medical aid in dying and has since been followed by two more. And UCLA’s approach, with trained psychologists guiding patients through this tricky terrain, shows us the way. Let’s take advantage of this wave to take better care of all our seriously ill patients. And let’s make sure we give patients what they really need and hope that lethal drugs are always the last tool in the toolbox.

Complete Article HERE!