What is medical aid in dying, when is it done and is it legal?

— Here’s an update on the end-of-life debate.

A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests.

More states and countries are enacting laws to let terminally ill patients in great pain decide when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, D.C., where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where it is legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

Patients must be adults with a terminal illness and a prognosis of six months or less to live.
Attending physicians must verify patients are acting voluntarily.
Patients must be able to make and communicate their decision to healthcare providers.
Patients must be able to self-administer (ingest) the medication.

Differences among laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute nonresident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

From the archives (June 2019): How ‘death with dignity’ laws allow terminally ill patients to take back control — sometimes at a price

Fine-tuning legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Healthcare systems

A patient’s first consideration of medical aid in dying may come in a conversation with a primary care physician or specialist when treatment options have been exhausted.

Dr. Nathan Fairman is a physician with UC Davis Health in California. He was selected to provide medical information to the state’s legislators as they prepared wording for the End of Life Option Act, enacted in 2015. Fairman explained how the process might go in his health system.

A UC Davis Health patient sees a primary care physician until a diagnosis necessitates care from a specialist. If treatment of a disease or condition is no longer beneficial, the specialist is likely to discuss end-of-life options with the patient.

Depending on the illness, medical aid in dying may be one of several options. Others may include palliative care and cessation of eating and drinking. Each option comes with its own set of considerations.

The patient makes the choice. A team is put in place to help the patient and doctors through the qualification process. “We employ navigators,” Fairman explained. These are two trained professionals who “make sure the patient has gone through all of the required steps — and there are a lot of them” — to qualify for medical aid in dying, if that is the choice.

“We were intentional about having a clinical social worker in this role,” he said. “It requires a high degree of advocacy and health system literacy. You need to have someone who is jumping through those hoops.”

Doctors may opt out

Doctors may disagree with the state law or their system’s policy. Professionals are not required to participate in aid in dying. Depending on personal beliefs, a doctor may refer a patient to a colleague in the same system.

In California, although referrals are allowed, they are not guaranteed. In the region served by UC Davis Health, most of the major health systems have policies for the process. The exception is Dignity Health, a Catholic healthcare system. A patient may have to change health systems to have access to aid in dying.

On the other side of the country, Providence St. Joseph Health is a Catholic healthcare system serving residents of Maine and Vermont, two states that have legalized medical aid in dying. The healthcare system has published its end-of-life policy. “PSJH considers intentionally hastening death to fall outside the scope of legitimate medical practice,” according to the document.

The PSJH policy acknowledges its patients may request a service it will not provide. “Providers and caregivers must not actively obstruct eligible patients from discussing, exploring or pursuing legal avenues to hastening death. Within the context of a therapeutic relationship, providers and caregivers should discuss with the patient why they may be inquiring about hastened death and what unmet needs there may be.”

Final exit network

A nonmedical end-of-life option is available through the Final Exit Network (FEN), a nonprofit organization based in Tallahassee, Florida, with about 20 “exit guides” who volunteer in all 50 states.

Wendell Stephenson lives in California and is a member of FEN’s board of directors. He said the organization is “devoted to providing information to people about how they can end their lives in a peaceful manner.”

FEN volunteers may be present at a death, but that is not required. Because physicians are not a part of the Final Exit Network process, medications are not used. Instead, FEN volunteers suggest using an inert gas and explain how to obtain and use it. Family members also receive guidance on observing the process but not helping, to avoid criminal charges.

Do patients measure up?

FEN has a medical evaluation committee consider applications from patients seeking to end their lives. The committee (composed of MDs and others with medical and mental health backgrounds) review applicants’ medical records with a couple of key considerations.

One of FEN’s rules is that applicants have conditions that “cannot be cured,” Stephenson said. They must have an intractable medical condition that seriously impairs quality of life. Most of these can be expected to shorten the applicant’s life, but death does not have to be imminent.

Another requirement is that applicants be physically able to manipulate the equipment that delivers the gas, Stephenson explained.

FEN does not provide the inert gas or related equipment, nor does it publicly discuss the content of the information they provide. For details, they refer to “Final Exit,” one of the books written by the organization’s founder, Derek Humphry.

Supporters and opponents

The Pew Charitable Trusts, a nonprofit research organization, issued a report summarizing the viewpoints of several of the world’s major spiritual groups regarding medical aid in dying. The report, published in 2012, provides more perspective from each religion than a simple “yea” or “nay.” Many faiths do not approve of MAID, a few allow for it, none endorse it. Some acknowledge the request for reduction of lifesaving techniques at the end of life.

In a Gallup poll in 2020, 74% of the 1,028 Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Activists are often family members of patients who have died painful deaths.

The Catholic Church has called MAID “morally impermissible.” Some Christian medical associations have also spoken out against medical aid in dying. The National Hospital and Palliative Care Organization is opposed, as is the American Association of People with Disabilities.

Will insurers cover it?

Will insurance cover medical aid in dying? “Sometimes,” Fairman said. “Many private insurances will cover it. MediCal [California’s version of Medicaid] will cover it for the state portion. Any federal insurance will not cover it.”

The Compassion and Choices website reports, “Regardless of whether a state has authorized medical aid in dying, insurance providers cover treatments that are deemed effective and proven, and not those considered unnecessary, experimental or below the standard of care.”

Countries outside the U.S. allow different end-of-life options. Callinan, CEO of Compassion and Choices, warns against comparisons “because the healthcare systems, the political systems, the economic systems, the cultures are entirely different.”

Canada passed its MAID law in 2016, covering residents eligible for Canadian healthcare. It has been updated several times. By 2024, a decision will be made regarding the inclusion of mental illness as a criterion.

Outside the U.S.

While euthanasia — medically assisted death performed by someone other than the patient — is illegal throughout the U.S., it is allowed in some other countries.

End-of-life options vary around the world. The practice is legal in Belgium, Luxembourg, Netherlands, Switzerland, Austria and Spain. Some processes resemble medical aid in dying and others are closer to euthanasia, though at the request of the patient.

Several Swiss organizations offer medical aid in dying to nonresidents. The oldest and best known is Dignitas, which has been featured in BBC and PBS documentaries. In addition to a membership fee, a patient pays a considerable sum for the end-of-life procedure.

Medical aid in dying is legal in New Zealand. In Australia, five of the six states either allow medical aid in dying or will by the end of 2023. Colombia allows the practice, while Chile, Uruguay and Argentina have introduced bills to decriminalize the procedure.

Several other countries have laws that allow patients to decline treatment and/or nourishment that would sustain life, according to World Population Review.

Complete Article ↪HERE↩!

May 21, 2023May 21, 2023

Who should have the ‘right to die’

What’s happening

Three decades ago, Dr. Jack Kevorkian became the face of the incredibly contentious debate over medically assisted death. Dubbed “Dr. Death” in the media, he claimed to have helped at least 130 patients die before being convicted of second-degree murder in 1998.

Kevorkian died in 2011, but the argument over whether it should be legal for doctors to aid people in ending their lives is still far from settled. Today, 10 states and Washington, D.C., allow medically assisted suicide — a process in which life-ending drugs are supplied to patients, who administer the dose themselves. The laws differ, but they generally state that individuals must have a terminal illness and a prognosis of less than six months to live to qualify. Only two states, Oregon and Vermont, allow medically assisted suicide for nonresidents.

While the U.S. is one of just a handful of countries to legalize what is often called medical assistance in dying (MAID), our laws are significantly more restrictive than those in some of our peer nations. For example, America is the only country to require a terminal diagnosis. All others allow people living with incurable illnesses that cause them “unbearable pain” to choose a medically administered death. Most permit both assisted suicide and euthanasia, in which doctors administer life-ending drugs directly. Several also permit MAID for people with severe mental illness and let individuals make “advance requests” in cases in which they’re expected to lose their capacity to make their own decisions in the future, such as from dementia.

Over the past few years, Canada has become the site of the highest number of medically assisted deaths in the world. There were more than 10,000 MAID cases in Canada in 2021. That’s more than the total number of assisted suicides estimated to have occurred in the U.S. since Oregon became the first state to legalize the practice in 1997.

Why there’s debate

At the most basic level, the debate over medically assisted death comes down to morality. Either you believe it’s categorically wrong for a doctor to help someone end their life or, like nearly three-quarters of Americans, you believe there are cases where people should be granted the “right to die” on their own terms.

The issue gets much more complicated when it comes to defining what those cases should be and what criteria people should have to meet before they’re allowed to choose a medically assisted death.

Advocates for expanding opportunities for MAID say that limiting access exclusively to terminally ill patients leaves countless people to suffer unnecessarily and denies them the ability to opt for a peaceful, pain-free death. They argue that a truly compassionate society would trust individuals to make their own choices, rather than insist that they die in a way that satisfies others’ sense of right and wrong.

But critics worry that more permissive assisted death laws could lead to a “death on demand” system or create circumstances in which people are pushed toward making the choice to die when that may not be necessary. There’s also concern that MAID could warp into a way for society to avoid the effort and expense of caring for its most vulnerable members, including the disabled, mentally ill and even the poor. Many critics point to troubling reports out of Canada — including one case in which a patient’s family claims he was “basically put to death” — as a sign of the slippery slope that can happen when there aren’t sufficient guardrails in place.

What’s next

Supporters of medically assisted death are hoping to expand the practice into more areas of the country. Bills that would legalize assisted suicide have been proposed in at least 10 states over the past year, though it’s unclear whether any of them will become law.

Perspectives

It’s inhumane to force people to suffer when they want to take a different path

“It is nothing less than cruel to prevent anyone from having some control in their most difficult hours as life comes to an end. Of course, there must be safeguards. … But for those who choose to end their suffering and for the families that support their decision, the death with dignity option should be available.” — Judy Kugel, Boston Globe

Assisted death should be available only in very limited circumstances

“Is it really more humane to deny a miserable person a clean assisted suicide than to grant it? Authorities should say yes: We won’t help you die because of your depression, poverty or unfit living conditions for the same reason we won’t take out your appendix if you have a broken leg, or prescribe lithium for a nasty case of psoriasis.” — Chris Selley, Wall Street Journal

Freedom to die should be treated as basic human right

“The ability to end one’s life is an important freedom. Our bodies belong to us, not the government. We should have the power to decide whether we wish to continue living, particularly if we are in constant pain or suffering debilitating or fatal illnesses.” — Scott Shackleford, Reason

The foundations of our humanity begin to crumble when life loses its value

“The idea that human rights encompass a right to self-destruction, the conceit that people in a state of terrible suffering and vulnerability are really ‘free’ to make a choice that ends all choices, the idea that a healing profession should include death in its battery of treatments — these are inherently destructive ideas.” — Ross Douthat, New York Times

Canada has shown how dangerous MAID can be for vulnerable people

“The introduction of euthanasia in Canada has become the slipperiest of all slippery slopes. Of course, the expansion of assisted suicide laws in the U.S. will produce the same troubling problems. … Canadians have the right to die, but do they have the right to live in the face of medical challenges?” — Valerie Hudson, Deseret News

We don’t have to choose between protecting the vulnerable and giving people the right to die with dignity

“Let’s be clear: It was always going to be complicated to find the proper balance between protecting patients and helping them die. Complicated but achievable. It should absolutely be possible to write laws that protect elderly, sick, disabled and otherwise vulnerable people from manipulation or coercion while still providing competent adults with options for relief from intolerable suffering or irremediable illness.” — Nicholas Goldberg, Los Angeles Times

The worst case scenario is a world where people can choose to die at any time for any reason

“The ultimate goal — or, at least, the consequence — of allowing assisted suicide/euthanasia is death on demand.” — Wesley J. Smith, National Review

Banning MAID leaves people to face, and often choose, death entirely on their own

“People facing the grim, painful finality of their lives are committing suicide right now, many without a physician present to ease their suffering — or to talk them out of it. Patients can’t be the primary decision maker on end-of-life options if the government refuses to permit the existence of a decision. Patients can’t consult with doctors or loved ones about their end-of-life preferences if the consultation itself is illegal.” — David Colborne, Nevada Independent

Current limits are so restrictive, the “right to die” largely exists only on paper

“The few places in the United States where assisted suicide is allowed impose restrictions so exacting they are difficult for people in state, and often nearly impossible for anyone out of state, to meet.” — Pamela Paul, New York Times

Sometimes life isn’t better than death

“The idea that any life is better than no life at all is largely unexamined and unchallenged, especially by the young and healthy. … But isn’t the principle itself — life at all costs — due for a reevaluation that pays more attention to the wishes of the individual? Wouldn’t more control of the time, place and circumstances of our deaths alleviate some of our fear of dying, if not of death itself?” — John M. Crisp, Tribune News Service

Complete Article ↪HERE↩!

May 20, 2023May 19, 2023

How to talk about end-of-life arrangements with aging loved ones

By Karen Garcia

Amy Pickard wants you to talk about death. Specially, she wants you to make your healthcare planning and end-of-life arrangements known to your loved ones.

She knows that talking about death is going to make most people squirm. But the Southern Californian, who runs the end-of-life consulting company Good to Go!, says an awkward but respectful conversation now lessens the grief of a loss when the inevitable happens and allows people to honor a deceased loved one’s wishes.

“I tell adult children to tell their parents, ‘Hey, I’m getting organized with all my advance planning, and I just realized that if I don’t know what I want, you guys certainly wouldn’t know,’” she said. “‘And then I thought if something happens to you guys, I wouldn’t have a clue what to do, and that terrifies me.’”

For some people, it comes from a fear of dying, said author Cameron Huddleston. She said having to talk about end-of-life arrangements feels like being forced to think about mortality.

“However, avoiding the subject doesn’t mean you can avoid the inevitable,” she said. “It just means that you probably won’t have a plan for your death, and you’ll make things harder for those you leave behind.”

Why we need the death talk

Pickard and other advocates for end-of-life planning find that sharing their personal experiences helps normalize the conversation. Pickard shares with clients her experience of grieving the loss of her mother, who died unexpectedly at age 67.

“So I’m in the wilderness of grief, and at the same time I had to suddenly be an accountant, a florist, a detective, a travel agent, an estate appraiser and just all these things. And I was none of those things,” she said.

Her mom didn’t leave any instructions or wishes. Pickard described the work of wrapping up her mother’s life as overwhelming emotional labor.

In the midst of grieving a parent’s death, you might also have to plan the memorial, end monthly magazine subscriptions and notify others of their death. It’s not easy to juggle these tasks or final wishes if you don’t know what someone wants or where their information is stored.

That’s compounding grief with tasks that are frustrating in the best of times. To avoid it, you’ll have to have a difficult conversation that a parent might not be ready for. Asking if your parent would prefer to be buried or cremated (or something else entirely) could elicit responses like “I’m not that old” or “Why, are you trying to get rid of me?” No, you aren’t, but you can’t be their advocate without knowing what they want.

“It’s OK to acknowledge that the topic is uncomfortable, but you could say that you would be even more uncomfortable making arrangements for them without their input,” Huddleston said.

What do you do when someone dies?

Because we find death so hard to talk about, there are probably lots of things people wonder but don’t know. We have answers.

Not having a parent’s healthcare wishes and end-of-life instructions could leave a child wondering whether they made the right decisions.

It can also be an overwhelming experience to sort through a person’s belongings for information.

When Pickard’s mother died, she had no directions to follow. The minute she arrived at her mother’s condo in Chicago to cancel the utility bills and take care of other death duties, Pickard realized that she didn’t know the name of the electric company that kept the lights on.

“I would have given anything to talk to my mom again,” she said. “Not to tell her I loved her, but to get her Wi-Fi password.”

At the end of the day, having this information at the ready allows people to focus on love, Pickard said — how much that person was loved and how much people loved them.

This future peace of mind extends to the person who made their end-of-life wishes known. Pickard says these instructions aren’t just mundane bill canceling. For an adult child, it can be the last time a mother, father or guardian takes care of them.

Huddleston added, “Think of letting your family know what your final wishes are as a gift — your final gift to them. You’ll make it easier for them during a difficult time by having a detailed plan that they can follow.”

Starting the conversation

There isn’t one right way to approach this conversation. It really depends on whom you are talking with.

If you know your person doesn’t like to be taken by surprise, give them a heads up, said Kate DeBartolo of the Conversation Project, an initiative of the Institute for Healthcare Improvement. For example, DeBartolo said, if you’re planning a two-week visit with your parent, let them know beforehand that this topic is on your mind and that you would like to talk about it with them.

This gives the person the opportunity to think about what they want if they haven’t already.

You can sit down and talk about it over coffee or sprinkle it into everyday conversation when it feels natural.

If you’re watching a TV show or movie that depicts a funeral, that could prompt the conversation. You could say, “That made me realize I’m not sure of what you would want in that situation” or “Do you agree with the decision that character made for their parent?” DeBartolo said.

It could be a one-on-one conversation or it could be done with several people.

“I heard a woman who said she made desserts for her family at Thanksgiving and she held them all hostage and said, ‘No pumpkin pie until you tell me how you want to die,’” DeBartolo said. “And everybody would go around the table and talk about it, and that worked for her family.”

Having the conversation

Before you broach the subject, DeBartolo wants you to keep in mind the following:

Your questions won’t be solved with one conversation. The more you discuss it, the easier it will be for someone to talk about and share their thoughts.
Don’t wait until the end of someone’s life to talk about their wishes. There’s a misconception that this conversation should happen with older adults. DeBartolo argues that everyone over 18 should get their arrangements in order or at least start talking about it. Keep in mind that the information will need to be updated whenever you move, get married, divorced or have a child.
Don’t start the conversation with financial questions. You might give a person the wrong impression — that you only care about their money.
Be an active listener. The person you’re talking with might not give you a straight answer. DeBartolo said a grandmother might say that she wants “home” to be a part of her end-of-life care. Ensuring that Grandmother is at home might not be feasible, but “home” could mean having home-cooked meals, living in a facility that allows her cat or having personal effects with her.

Lastly, when you’re ready to reach out to someone, remember to frame the conversation with compassion. This doesn’t have to be a painful talk, DeBartolo said. It can be loving, a time to share memories.
In the conversation, Huddleston said, find out the following information at the very least:

How the person wants their remains handled. If burial is their choice, ask if a plot has been purchased or where they would prefer to be buried.
What type of memorial service they want, including music choices and who will speak.
The names and contact information of the people they would like to be notified of their death.
Information for the obituary.
The location of wills, trusts and any life insurance policy.
A list of assets and accounts, including things like the names of their utility companies — and their computer login and Wi-Fi information.
Any specific instructions for how they want heirs to handle their inheritance.
Arrangements for children or pets.

Some people will never want to talk out loud about this, and DeBartolo said that’s OK too. Let them know you’re open to hearing how they’d like the end of their life handled in any way they feel comfortable communicating it. If they can send you an email or a text of a few instructions or tell you where their important documents are, that can be enough.

Resources

The Conversation Project has a free starter guide and focuses on end-of-life healthcare.

Good to Go! sells a “departure file” and offers consulting services in a private or group setting. The latter is called “Good to Go! Parties,” an upbeat gathering to talk, eat, drink and fill out the departure files.

CaringInfo, a program of the National Hospice and Palliative Care Organization, has guides and resources to help clarify the difference between hospice and palliative care or what you need to create an advance directive.

International End-of-Life Doula Assn. has a directory of doulas who can assist with advanced-care planning.

Death Cafes, in-person or online, are group-directed discussions of death with no agenda, objective or theme. It’s a discussion group and not grief support or counseling.

The California Office of the Attorney General has an end-of-life care checklist, resources including Medicare information, an advance healthcare directive checklist and more.

Complete Article ↪HERE↩!

May 19, 2023May 18, 2023

Less Than Half of U.S. Adults Have Wills or Advance Healthcare Directives

By Laurnie Wilson

Death or medical emergencies are never topics that are easy to address. However, a last will or testament can make a difference in the way that one experiences aging, as well as how families grieve in the aftermath of a deceased loved one. Gallup findings from 2021 show that less than half of U.S. adults had a will at the time. Where do Americans stand today on last wills, as well as living wills and advance healthcare directives?

Around 4-in-10 Have Last Wills, More Are Planning On It

New CivicScience data show that the percentage of U.S. adults with wills is still less than half – 38% of Americans currently have a last will and testament detailing property and asset rights after death. However, half of respondents plan to create one in their lifetimes, and 22% plan to make one in the next 12 months. If that were to happen, over 50% of Americans would then have a will by this time next year.

As it turns out, last wills are most common among:

Adults aged 65+: 61% have a will, compared to 46% of those aged 55-64; 35% of those aged 35-54; and 22% of those aged 18-34.
Homeowners: 49% have a will, compared to 23% of renters.
High-income earners: the higher the annual household income, the more likely someone is to have a will.

Age 65 and up appears to be when most Americans are likely to create a will for their financial assets. Less than half of adults under age 65 currently have a will, but between 20-25% plan on creating one in the next 12 months. To no one’s surprise, adults aged 18-34 are the most likely to not plan on making a will (16%), although 62% foresee creating one at some point in the future.

Additionally, attorneys are the most popular option when it comes to the process of preparing a will. More than half of U.S. adults said they used an attorney to prepare their will, while 17% used an online site such as LegalZoom or Free Will, and 34% either wrote their own will or used other means (n=2,202). However, adults aged 34 and younger showed a high rate of using online sites (28%) compared to an attorney (36%). Legal document preparation websites and digital services are likely to become increasingly popular over the traditional use of an attorney as the U.S. population grows older.

Living Wills Are Alive and Well

A living will allows individuals to state their healthcare preferences in the case that they are unable to communicate them at a future date. More than a third of Americans report having this type of advance medical directive (34%), slightly lower than the percentage of those with last wills. Over a quarter (26%) say they plan on creating a living will in the near future.

The data suggest that knowledge of this type of advance medical directive is surprisingly high, as just 7% of adults say they are unfamiliar with a living will and 47% are planning to create one at some point in life. Adults aged 65+ are once again the most likely to already possess a living will, but adults across the board demonstrate a high interest in creating one, including 52% of adults aged 18-34.

Interestingly, 24% of Americans have either a designated financial or healthcare power of attorney, and an additional 20% say they have both (n=3,927).

Americans Are Planning for Their Futures

Of course, legal documents aren’t the only aids Americans may turn to in order to ease the burden of their passing. For some, life insurance answers the question of how to ensure your family is prepared in the event of your death.

As of 2023, 57% of U.S. adults say they have a life insurance policy, the same percentage as in 2022. And as the data show, those who have life insurance are highly likely to have a last will or to be planning to create one if they haven’t already. That said, a significant portion of people without a life insurance policy and not intending to secure one currently have a last will (49%), but they are also the least interested in creating one in the future.

Finally, data show those who have a will or plan to create one are more optimistic about the future than those who never plan to create one. So while some may view end-of-life preparation as a sign of pessimism, perhaps sentiments are changing, as many Americans plan to take steps for the future.

Complete Article ↪HERE↩!

May 17, 2023May 17, 2023

Why Americans Are Dying So Young

A memorial of white crosses is erected to the children killed at school in Uvalde, Texas at the starting point of the March for Our Lives protest on June 11, 2022 in the Brooklyn borough of New York City. Across the country in various cities, thousands are gathering to demand for meaningful gun laws following the recent shootings from Uvalde, Texas, to Buffalo, New York. The March For Our Lives movement was spurred by the shooting at Marjory Stoneman Douglas High School in Parkland, Florida, in 2018.

By Laudan Aron and Gavin Yamey

Life expectancy in America fell sharply in 2020. It fell again in 2021. The COVID-19 pandemic certainly played a role, but that’s not the whole story. During this same time period, eight of the ten leading causes of death also increased. Even maternal and child and adolescent mortality increased. In August 2022, federal health officials released new data showing that across all demographic groups, Americans are dying younger.

Ten years ago, a landmark report called “Shorter Lives, Poorer Health” documented for the first time a widespread “U.S. health disadvantage,” a shortfall in the health and survival of Americans relative to other high-income countries [Aron was the report’s study director]. On some measures, such as violent deaths among males aged 15-24, the divergence from other rich countries began growing as early as the 1950s. The report showed that the U.S. had the lowest life expectancy among peer countries and higher rates of injury, illness, and death from dozens of causes. Evidence of this disadvantage was found for young and old, rich and poor, men and women, and Americans of all races and ethnicities.

Another seminal report released in 2021, called “High and Rising Mortality Rates Among Working-Age Adults,” showed that U.S. mortality rates have been increasing in mid-life (ages 25-64), the prime years for family formation, childrearing, caregiving, and employment. More surprisingly the rising mortality among U.S. children and youth between 2019 and 2021 represents a profound crisis. Although not predictive of future mortality conditions, which are likely to change, current survival rates mean that one in 25 American five-year olds will not reach their 40th birthday.

The reasons behind these disturbing trends are many, and one might argue, uniquely American. Here are five:

A poor start in life for many young Americans

Beyond the latest data on rising pediatric mortality rates, it is clear that the U.S. is failing its youngest citizens on multiple fronts. For at least a decade now, cross-national comparisons of child and adolescent wellbeing in rich countries show that the U.S. ranks at or near the bottom on most measures. Such measures include material wellbeing, health and safety, behaviors and risks, education, housing, family friendly policies, and social protection. Further, careful analyses of overall levels of social spending by country show that, compared to other high-income nations, the U.S. is distinct in how it spends, not how much it spends. American spending is much less redistributive, with fewer benefits going to children, families, and the disadvantaged. In addition to high rates of infant and maternal mortality, the latest data show that U.S. children are in the midst of a deepening mental health crisis, with increased access to firearms and opioids driving up rates of suicide, homicide, and overdoses. In 2020, firearm-related injuries surpassed motor vehicle crashes to become the leading cause of death among young Americans ages 1-19.

A dysfunctional and costly healthcare system

Among the many factors driving health and survival is healthcare. The U.S. has long been known for having one of the most complex, fragmented, and expensive healthcare systems in the world. For millions of Americans, quality, affordable, accessible healthcare is simply out of reach (and the uninsured are more likely to die young than the insured), or it is effectively unavailable, or disappearing due to political pressures, as in the case of sexual and reproductive healthcare. The U.S. healthcare system, its high costs, and its poor health outcomes, start to “make sense” when viewed through a business case lens, and its optimization of revenue and profits, rather than health and wellbeing. As Dr. Elisabeth Rosenthal, editor-in-chief of KFF Health News, says about the U.S. medical market, “a lifetime of treatment is preferable to a cure” and “prices will rise to whatever the market will bear.” It should come as no surprise then that that the U.S. healthcare system is one driver of the poor health and survival of Americans, many of whom are uninsured, underinsured, medically undertreated or overtreated, distrustful of the system, and drowning in medical debt. Finally, the astounding $4.3 trillion (or $12,914 per person) spent annually on healthcare in the U.S. far exceeds spending in other countries around the world, and crowds out other social investments that matter to human development, protection, and flourishing.

Societal systems that undermine wellbeing and accelerate inequality

Beyond healthcare, many other aspects of life and the policy-driven systems that underpin them are compromising the health and wellbeing of Americans. Lives are diminished and lost because of the U.S. approach to food and nutrition, housing and civic infrastructure, education and training, employment and entrepreneurship, crime and safety, economic and community development, credit and financial services, social protection and safety nets, and environmental conditions. Deep dives into most of these systems often reach two strikingly consistent conclusions: (1) they are perpetuating or accelerating inequality, and (2) they are working as designed, meaning their seemingly perverse effects are a feature, not a bug. These systems reflect both historical factors and ongoing choices by policymakers and private sector interests. The good news here is that other countries are making different choices, which (in theory) means the U.S. can too. We can rein in negative commercial determinants of health (private sector activities affecting health) and instead build genuine care systems and adopt a health-in-all-policies agenda, defined by the CDC as “a collaborative approach that integrates and articulates health considerations into policymaking across sectors to improve the health of all communities and people.”

An inadequate policy response to growing inequality and precarity

The large and growing U.S. disadvantage in health and survival is, in part, a reflection and accelerant of economic inequality and precarity. U.S. income and wealth inequality is high, has risen substantially over recent decades, and exceeds levels in other advanced democracies. Some might argue that high levels of inequality are acceptable as long opportunity and socioeconomic mobility remain high. But such opportunity and mobility have seen a dramatic reduction in the last half century, with only half of children today earning more than their parents did, compared to 90 percent of children born in 1940. Equally importantly, Americans greatly underestimate actual levels of wealth inequality and still prefer that wealth be more equitably distributed. The conditions producing such high levels of inequality — and ways of mitigating or reversing them — are of course matters of public policy. In addition to more progressive tax and transfer policies, which also affect many middle-class entitlements, any policy that expands access to the social determinants of health – nutrition, education, employment, housing, transportation, safety, justice, caregiving – will in turn improve population health and wellbeing. Policymakers influence their availability, accessibility, and affordability. One reason other high-income nations outperform the U.S. on health and survival is because the many resources that matter to health and wellbeing are distributed (or redistributed) more equitably and they have stronger systems of social care and protection.

Structural racism, racial capitalism, and their attendant injustices

Although the U.S. health disadvantage affects all Americans, even privileged ones, the most marginalized communities have always paid a much higher cost. The latest data on U.S. life expectancy by race/ethnicity confirm this and are a powerful reminder of the ongoing influence of systemic racism in the American landscape. As Dr. Camara Jones, past president of the American Public Health Association, explains, racism is “a system of structuring opportunity and assigning value based on the social interpretation of how one looks (what we call ‘race’), that unfairly disadvantages some individuals and communities, unfairly advantages other individuals and communities, and saps the strength of the whole society through the waste of human resources.” By unfairly structuring opportunity and allocating access to the resources that matter to health and survival, structural racism, racial capitalism (the interlinkages between capital accumulation and racial exploitation), and other forms of injustice directly influence population health. It is critical to acknowledge these root causes of the U.S. disadvantage in health and survival, rather than fall prey to overly simplistic narratives that blame individual people and places for their poor health. Ostensibly race-neutral policies and practices often perpetuate an enduring legacy of racism, protecting the health of some communities at the expense of others. One fascinating example is when the Florida Department of Agriculture banned sugar growers from burning sugar cane “when the wind blows east” in an effort to protect wealthier, whiter communities from their toxic fumes.

Declining life expectancy in the U.S., and especially rising deaths rates of children and adolescents, should be a loud wake-up call for the nation. The more hopeful but still urgent news is that we can change this reality: conditions of life and death are direct reflections of our values and priorities and the policies we choose to govern our communities and the nation as a whole. If we are to enjoy a level of health, wellbeing, and survival similar to those in other advanced democratic nations, Americans will need to make a fundamentally different set of policy choices.

Complete Article ↪HERE↩!

May 16, 2023May 15, 2023

Making peace with life the secret to a good death, says veteran palliative care counsellor

Recently retired counsellor Barry Whelan spent 18 years in ministry before working in palliative care.

By Rachael Lucas

Over the past 25 years, Barry Whelan has made more than 20,000 visits to palliative care clients and their families.

The recently retired palliative care counsellor from Poowong, in Victoria’s south-east, has guided people of different faiths and backgrounds through the final stages of their life.

It’s given him insight into what happens when someone is at the end of their life.

“When someone is diagnosed with a terminal illness, they run through a milieu of emotions,” Mr Whelan says.

“Most people get to their 30s or 40s or 50s and think they’ve got 30 years left, then all of a sudden they’re told that they’ve got something that’s going to terminate their life.”

Elsie's Project — Resolution of an ongoing family dispute is an important part of the dying and grieving process.

He says common reactions to a terminal diagnosis include shock, denial, or anger followed by questions such as ‘Why me? Why now?’ and ‘What happens when I die?’

“I often get asked, ‘What’s it like to die?’ and my favourite line is ‘I don’t know, I’ve never done it, but I can teach you how to live before you die’.”

Palliative care primarily involves nursing in co-ordination with services such as occupational therapy, art and music therapy, counselling, and pastoral and spiritual care.

“When I first started back in 1997, it was probably a 95 to 98-per-cent death rate, but now with the advances in modern medicine, people survive a lot longer,” he says.

Despite significant advances in pain management with terminally ill patients, Mr Whelan said the mental anguish around death and dying remained a challenging personal journey for individuals.

A good death

Mr Whelan says initial visits with palliative clients were about determining a client’s goals, priorities and what they wanted to achieve in the time they have left.

“A good death to me is someone who is at peace with themselves, at peace with their family or surroundings and at peace with whatever they believe in,” he says.

As a counsellor, he has helped clients work through their stress, anxiety, guilt and past issues to reach a point of comfort.

“One of the first patients I had, the lady wanted to jump from a parachute. She survived the parachute jump but within a few weeks she had passed away,” he says.

“It was something that she wished to achieve”.

Barry stands between two professional women — Barry Whelan with Palliative Care South East (PCSE) chief executive Kelly Rogers (left) and co-founder Dr Ruth Redpath.

Mr Whelan says the most heartbreaking cases that he witnessed as a chaplain in aged care facilities was when terminal patients who had not had a visitor for months and even years were suddenly set upon by relatives.

“Where there’s a will there’s a relative,” he says.

Likewise, he says that family dispute resolutions were an important part of the dying and grieving process.

“I’ve seen people sit on one side of the chapel with other family on the other side [and] it was all over some trivial thing that happened 40 years before,” he says.

“It’s amazing what drives people apart, and how little it can be to bring them back together.”

The body follows the mind

Mr Whelan says he has observed that terminal patients can linger on for days or weeks if there is something unresolved that they wish to sort out.

“I think the body follows the mind in this, both in living and in dying,” he says.

“A lot of people, once they come to that peace they can accept the dying, but a lot of people hang on.”

He recalls the story of a woman who was sent home to die in October 2007, whom he later visited in February 2008.

He says she was determined to see out her 47th wedding anniversary, then she willed herself to live for her 70th birthday celebrations, and later her son’s wedding in May 2008.

“That lady went right through for the two and half years that I visited her, until finally we made the decision at work that she wasn’t really palliative anymore,” he says.

“She was still having chemotherapy, but she didn’t really need us.

“We all have aims and goals.”

She eventually passed on in 2015, living for seven years beyond her life expectancy.

Young Barry — Barry Whelan estimates he has counselled more than 2,500 terminally ill clients since starting in 1997.

Mr Whelan has witnessed countless occasions where clients have seen through a birthday or milestone celebration, waited until a relative had arrived from overseas, or met a new addition to the family before passing within days of an occasion.

“The other thing that I see is that sometimes people wait until their loved ones have left the room, and then they will simply just close their eyes and they’re gone,” he says.

Mr Whelan believes that self-will plays a key role in a person’s ability to hang on to life. In the same way that people without particular purpose, attachment, direction or will to live, can make a call on when they’ve ‘had enough’.

He says it is not unusual for widowers to pass on not long after losing a lifelong spouse and soul mate.

“If a person doesn’t feel wanted, doesn’t feel needed, I think they lose the will to live,” he says.

“I have seen people who have gone to hospital and not been visited by their loved ones, and they’ve died within a few days. So again, it’s this will to live.”

A man walking into the light at the end of a dark tunnel — Terminally ill patients have a tendency to determine when they’ve ‘had enough’.

In illustrating an example of a sustained will to live, Mr Whelan refers to the stories of concentration camp survivors and prisoners of war who manage to make the best of every day despite horrific circumstances.

“I guess my motive has been to survive as best you can for as long as you can with the best conditions you can manufacture from what you’ve got,” he says of his philosophy on life.

After 25 years witnessing people in their final stages of life, Mr Whelan says that he has learned to value everything he has.

“My advice to people is just, ‘enjoy what you’ve got, while you’ve got it, because you can’t go to a doctor and ask for a prescription for tomorrow’.”

Complete Article ↪HERE↩!

May 15, 2023May 17, 2023

Washing and dressing our dead

— The movement challenging how we grieve

Shelley Anson took part in a washing and dressing ritual when her mother Lorraine died. Here, she holds a frame photo of her parents.

Advocates say that modern practices have robbed us of centuries-old rituals and interrupt a profound and pivotal point in the grieving process.

By Sophie Aubrey

Four days after her mother died, Shelley Anson walked into a candlelit room at a funeral home. There, her mother Lorraine lay on a bed, tucked in as though she were just asleep. A cooling mat to slow decomposition was humming away beneath her body.

“She looked so beautiful. She had colour in her face, even her lips. I asked if it was make-up, but it was from massage. I was in absolute disbelief and awe, I cried and cried,” Anson says.

“I was kissing her and she was cold to the touch, but that was OK. I was telling her how much I loved her, how grateful for her I was and how happy that she was reunited with my dad.”

For the next three hours, Anson cuddled her mother, brushed her hair and washed her face, arms, torso and legs with warm water and myrrh oil. Finally, she dressed her in her favourite sequined maroon dress for the funeral.

The experience, in December, was transformative for Anson’s grief.

“It was perfect in every way. It brought me absolute, great peace,” she says. “I could have stayed longer, but I felt like I’d finally done enough and that it was OK to go home.”

In contemporary Australia, much as in the rest of the Western world, our eyes are closed to the realities of death. The dead are often hurried away from a hospital room by an appointed funeral director and not seen again, unless a family chooses to farewell them with an open casket.

But there is a growing push towards keeping vigil with a loved one after their death and taking on the care of their body, either at a private house or a funeral home.

Advocates of what’s been termed the “death-positive movement” say our modern, sanitised practice interrupts our grieving process, creates a fear of death and has contributed to the loss of centuries-old rituals of caring for our loved ones.

A bereavement casting made by Pia Interlandi of Shelley Anson’s hand clasping her mother’s.

Libby Moloney is the founder of Natural Grace, a Victorian holistic funeral company that has been at the forefront of shifting the narrative around after-death care.

“In the 1900s we surrendered the care of our dead to well-meaning strangers in what we now know as the funeral industry. In a way death was sterilised and outsourced. It’s a model that’s very much about easing your burden, taking away the stress,” she says.

But Moloney says this robs families of a pivotal point in the mourning process that comes from the act of being with the body of their loved one, of feeling the stillness of their hand.

“It happens to everybody, and it’s deeply sacred,” Moloney says. “It takes the human mind and body about three days, where there’s a visceral, profound knowing that ‘I’m ready’ – ready to separate from the body of my person and I can now go on to the next steps. It’s unbelievably empowering.”

She says at least 80 per cent of her clients have an element of death care, with roughly half choosing to do this at home, the other half at her Woodend or Fairfield sanctuaries. These rituals usually take place over a three-day period before a funeral ceremony and burial or cremation.

Tasmania-based Bec Lyons spent six years in the mainstream funeral industry before becoming a death doula and independent funeral practitioner. Today, she leads both the Australian Home Funeral Alliance and Natural Death Advocacy Network, which aim to raise awareness of family-led funerals, death care and natural burials.

Death care is not for everybody, but Lyons’ goal is to teach people that there isn’t just one way to grieve. Most Australians don’t know that they don’t have to appoint a funeral director, and that it’s perfectly legal and safe to care for the body of their loved one. In NSW, the deceased can stay at home for up to five days; in Victoria, there is no prescribed limit. The key requirements are to register the death and arrange a burial or cremation.

Australian Bureau of Statistics data shows there were more than 171,000 registered deaths in 2021, up from almost 147,000 10 years earlier. It’s estimated that by 2066, the number of annual deaths will be over 430,000.

“There’s a pertinent conversation around what are we going to do with all those bodies? Death needs to move back into the home,” Lyons says.

With 70 per cent of Australians wanting to die at home, Lyons believes that the older generation, having watched their parents die in nursing homes, want to do things differently.

She says the number of home funerals she’s facilitated has doubled in the last 12 months, which she puts down to increased understanding of death, as well as financial considerations: they can be half the cost of a typical funeral.

Lyons says more people began to explore the idea of after-death care and home funerals (meaning a dead person is kept at home until they are put to rest) during COVID-19, when restrictions stripped away usual mourning practices. Holding vigil at home was still possible.

“In conventional Western society, the only vehicle we have to mourn is the funeral ceremony. For people who want that, that’s fantastic. But when COVID-19 hit, you ended up with grief that had no outlet,” she says. “Grief is an emotion that needs something to do.”

Anson’s mother died at age 79, 2½ years after a brain cancer diagnosis. Anson, an end-of-life doula and nurse, cared for her at home for the first seven months until, emotionally, she couldn’t do it any longer. But putting her mother in a nursing home weighed heavily.

It’s why after-death care and being with her mother’s body was extraordinarily healing: “That was my way of giving that last bit of love that I felt I hadn’t been able to give.”

Melbourne Chevra Kadisha CEO Simon Weinstein with volunteer Yaelle Schachna.

Several religions and cultures have preserved ancient death care rituals. In Islam, it’s customary for same-sex relatives to wash the bodies of their dead, usually three times, then wrap them in sheets. Hindu families traditionally wash a body with holy ingredients such as milk, honey and ghee before dressing them.

Simon Weinstein is chief executive of the Melbourne Chevra Kadisha, a funeral home that serves much of the city’s Jewish community and delivers funerals according to Orthodox laws and traditions.

In Judaism, a burial should happen as quickly as possible, preferably within a day, and until that happens, a body is guarded – an act called “shemirah” – by family sitting close by to protect and comfort the soul.

The body is also washed in a ritual of purification and immersed in a holy bath. Weinstein says this process, tahara, is done by trained, same-sex volunteers as children and grandchildren of the dead cannot be involved to preserve modesty – but the community is tight-knit, and there is often a connection with at least one volunteer. “It’s an act of ultimate kindness and respect,” he says.

The cotton shrouds for the ritual of tahara are ironed at Melbourne Chevra Kadisha.

The dead person is then dressed in white cotton shrouds, and it’s at the end of this process that close relatives sometimes enter the room to place a cap on the head or tie a final bow.

“A common theme that comes out is how angelic they look. It’s very comforting for families,” Weinstein says.

Yaelle Schachna was praying in a room next door when her late grandmother was undergoing tahara. She joined for the final stage. “I gave my grandmother a kiss and it was very peaceful for me to see her. I could say goodbye.”

Last year, Schachna became a Chevra Kadisha volunteer. She this week helped send off her great aunt in a purifying ritual.

“For the first time, I stood there and was teary the whole time,” she says. “It was a beautiful send-off. I think you can hear in my tone the holiness I feel.”

There are two methods of looking after a dead body. One is through cleaning and cooling, which slows rather than stalls decomposition. The other is with embalming, which involves injecting chemicals such as formaldehyde and methanol to prevent the corpse from degrading.

Death positive advocate Dr Pia Interlandi, here pictured in 2014, runs Garments for the Grave.

RMIT senior lecturer Dr Pia Interlandi has been involved with the death-positive movement for a decade, creating bereavement casts – one of which she made for Anson of her and her mother’s clasped hands – and running Garments for the Grave.

Interlandi believes the movement goes together with attitudes on living sustainably. “If you love composting and the environment, it doesn’t make sense to be embalmed with chemicals and put in a box lined with plastic,” she says.

“Embalming is sold as a perceived psychological protection to seeing the dead body of a person you love. The natural death movement is about saying ‘you can cope with this’.”

Interlandi says that it might feel “strange” to see a dead body at first, but the slowness of death care allows you to move through the shock. “Dressing my nonno [grandfather] was the most transformative moment of my life,” she says.

Moloney explains that dead bodies become cold and pale, while limbs stiffen and get heavy, but these changes act as signals that the person is ready to be returned to nature. “It’s incredibly powerful and healthy to see those gentle changes; they inform our subconscious that we need to prepare to separate from their body.”

Ana and Thea Lamaro pictured together before Ana’s death in 2016.

Thea Lamaro’s mother, Ana, began to prepare for her death two years before she died of breast cancer in 2016. She decided she wanted her body to be taken home to her apartment after her death, and not be left alone for three days.

Ana’s body was washed and dressed in a shroud by family and friends and Thea spent time talking to and holding her mother.

“I felt so comforted by having her body in the house. When I woke up throughout the night I could go to her,” Thea says.

Samantha Selinger-Morris with her mother, Sylvia Morris.

“[It] helped me so much to integrate the fact she had finally died. It was a very gentle way of saying goodbye.”

Thea, who is developing a podcast series called Approaching The End speaking to people preparing to die, says she appreciated being able to decide the moment her mum’s body left the house: “I was letting her go rather than having her taken from me.”

Interlandi hopes that our conversations on death evolve past the question “do you want to be buried or cremated?” and towards: What type of funeral do you want? Who do you want to be cared for by? How do you want to be dispersed?

“People think it’s hippie woo-woo, and it’s not. There is a spiritual component, of course, because this is ritual – but it’s about choice and how you identify yourself in life goes into how you identify yourself in death.”

Complete Article ↪HERE↩!