Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!

Home-Based Palliative Care Can Improve Quality of Life

Relieving a patient’s symptoms and providing support to caregivers is the goal. It’s a beneficial program, but cost is a factor.

By Lola Butcher

Cleve Hart of Pollock Pines, California was about to be discharged from the hospital when a social worker suggested that he might benefit from home-based palliative care. At the time, he and his wife, Toni, were unfamiliar with palliative care — an array of supportive services for people with serious illnesses — but they have benefitted greatly from those services for the past three years.

Cleve has been diagnosed with dementia, kidney problems and cancer. A nurse comes to their home once a month to check his vital signs.

“And she makes suggestions — like, if he’s not eating well, she suggests things that maybe would increase his appetite,” Toni says. “They just try to make him as comfortable as possible.”

Meanwhile, Magen Fregoso, a social worker at Snowline Supportive Care in nearby Sacramento, California, has directed the Harts to various resources for financial and other support — for example, a place to get adult diapers at no cost — that make their lives easier.

“They might sound like little things, but they’re big things to us, you know?” Toni says.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain.”

For her, just knowing that the palliative care team is available for immediate advice is a huge comfort.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain,” Toni says. “And they right away tell me, ‘Yes, you should take him to the hospital,’ or ‘No, give it a couple hours and see how it goes.’ They just counsel with us and that’s a great relief for me to know what to do.”

That’s the goal of home-based palliative care, said Susan Enguídanos, associate professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California. By relieving a patient’s symptoms — pain, shortness of breath, constipation, anxiety and others — and supporting their needs, whether that’s meal preparation or grooming or emergency advice, the home-based team makes life better.

Over the past two decades, her research has documented that patients who receive home-based palliative care services have fewer emergency department visits, hospital inpatient days, skilled nursing stays and physician visits than similar patients who do not receive that extra support.

The total cost of their medical care, including the palliative care services, is significantly less; patients report greater satisfaction with their care; and they are more likely to die at home, as per their wishes, than patients in a comparison group.

Nonetheless, home-based palliative care is still not available for most U.S. patients. In an interview with Next Avenue, Enguídanos explained why.

Next Avenue: What is home-based palliative care?

Susan Enguídanos: The vast majority of palliative care is provided in the hospital. That typically happens when a patient has a very serious condition and needs help deciding what kind of care they want or help with pain management. They would only have access to that palliative care team until they are discharged from the hospital. At that point, if they’re lucky, they might be referred to an outpatient palliative care clinic.

Home-based palliative care is really the only place for continued access to palliative care unless you have enrolled in hospice because your doctor believes you are in the last six months of life.

What is the difference between hospice and home-based palliative care?

Both hospice and home-based palliative care provide symptom management, psychosocial support, pain control, education and caregiver support to meet a patient’s medical, social and spiritual needs.

But they are completely different in this way: Hospice is for people who are actively dying and who do not want to pursue aggressive treatment for their medical problems. Home-based palliative care is for people struggling with a serious illness but who are not actively dying and, in fact, may be undergoing treatment with the goal of recovery.

So every seriously ill person is eligible for home-based palliative care?

Unfortunately, that’s not the case. The biggest problem is that Medicare does not pay for home-based palliative care. Because there is no consistent funding, there is no standardization as to what these programs look like or who can receive services.

“The first thing is to check with your insurance company. Just say: ‘I am interested in home-based palliative care and can you help me?'”

California is one of the best states in providing home-based palliative care. The big Kaiser Permanente health system here serves a huge number of patients through its program. They know the evidence shows that it is good for patients and it’s also good for their bottom line.

Outside of that, things are a little iffy, even in California. Blue Shield of California (one of the biggest private insurers in the state) started paying for home-based palliative care about four years ago. Individuals covered by a Medicaid managed care plan can access the services, and some commercial insurers or medical groups may offer it, but each program looks a little different.

Home-based palliative care is also available in other states, of course, but there’s a lot of variation depending on who is providing the services and who is paying for it.

How can a patient or caregiver find out if home-based palliative care is available?

The first thing is to check with your insurance company. Just say: “I am interested in home-based palliative care and can you help me?” The second thing is to ask your doctor. But you should be aware that some physicians have no idea what palliative care is, let alone home-based palliative care. So they might not know how to refer a patient to a program.

If those two steps don’t lead to anything, look online to see if there are local providers of home-based palliative care in your community. Here in California, some programs have a cash-pay option for people whose insurance does not cover home-based palliative care. And there are some agencies that have a charity aspect that supports some patients.

Complete Article HERE!

The App That Prepares You for Death

Through asking the hard questions, this app will coach you through end-of-life plans.

By Steph Panecasio

When someone you love passes away, it’s impossibly hard to prioritize all the logistics. You’re facing unimaginable stress and grief all at once, so when it comes time to negotiate funeral planning, insurance records, legal and financial documents, and more, it can be overwhelming.

So it’s important to get all of this sorted before you’re reeling from loss.

Enter Bereev, a death preparation app that’s beginning to make waves in Australia. Its purpose is to destigmatize the conversation surrounding end of life, turning death from a taboo topic to a dinner conversation. With planning and preparation, according to Bereev, we can ease the lives of the people we leave behind.

To spread the word, founder Izumi Inoue launched Death Convo Game, a campaign asking 31 questions about death over the 31 days of May.

Screenshot of an app, with an orange box asking you to list the Top 3 things on your bucket list.
The app asks you to start the conversation with your loved ones.

“Initially it was all about getting folks to get started on their preparations, mainly getting their affairs, instructions, documents, and messages in order so that the people they leave behind will get the chance to grieve, instead of running around dealing with the death admin which can be very traumatising,” said Inoue.

“We sat down as a team and asked ourselves, what are the biggest/most burning questions about death that we ourselves as individuals want to talk about? With that, we started off with close to a hundred questions, which we then put on a vote amongst a small group of our existing users and picked the top 31.”

The game, and the wider app, ask you to challenge your preconceptions about death. Each day, you’re prompted with a new question to open up a dialogue with your loved ones.

“How would you like to be remembered?”

“Who would you like to be surrounded by towards the end?”

“When do you feel most alive?”

For every day that users participate in the Death Convo Game, it gives them a greater chance to score free access to the Bereev app, where they can prepare their plans.

From there, the app coaches you through the difficult process of organizing your end of life plans, no matter what you might choose to do. It also has a focus on inclusivity, with options for Muslim users who wish to upload their Wasiat and Hibah to their preparation plans.

“We started off in Malaysia back in 2018 and Malaysia is a melting pot of cultures, ethnicities and religions,” said Inoue. “It taught us a lot in terms of navigating a spectrum of beliefs, and like it or not, death and religion can be very intertwined. Because of that, I think that every death tech startup should take their communities’ beliefs into account and weave that into their user experience.”

Death tech is a hugely promising arena, with everything from alternative cremations and funeral tech through to video games dealing with the concept of end-of-life care. It’s little wonder that apps like Bereev have such an invested audience, when all of us are guaranteed to face death eventually. 

It stems from the concept of death positivity, which is all about destigmatizing the conversation. Death positivity doesn’t mean you’re looking forward to death — it just means that you accept what comes and that you learn to talk about it in a healthy way.

That’s why Inoue and the team behind Bereev believe it’s even more important to deal with the paperwork before it comes time.

“I’ve lost both of my grandparents and have seen with my own eyes the toll an unprepared death takes on the people left behind,” said Inoue.

“It causes friction, additional trauma and it tears families apart. No one in their right mind would want to inflict that one their already grieving loved ones. … I have a saying that I stick by: When I go to heaven, the last thing I want is to put my loved ones through hell.”

Complete Article HERE!

For Terminal Patients, the Barrier to Aid in Dying Can Be a State Line

Complex restrictions are preventing patients from accessing medical aid in dying, even in states where it is allowed. New legal and legislative efforts are pushing to change that.

Dr. Nicholas Gideonse, a hospice medical director and doctor at Oregon Health & Science University.

By Paula Span

Five years ago, Dr. Nicholas Gideonse spoke with an older man who had received a terminal cancer diagnosis and was hoping to use Oregon’s medical aid-in-dying law.

Oregon’s Death With Dignity Act, in effect since 1997, permits doctors, after a complex process of requests and waiting periods, to prescribe lethal medication for dying patients to self-ingest.

The nonprofit group End of Life Choices Oregon had referred the man to Dr. Gideonse, a primary care doctor at Oregon Health & Science University and a hospice medical director, who had already helped many patients use the law.

But this time he could not. “I’m really sorry,” he told the man on the phone. “I’m not going to be able to help you with this.” Oregon’s law — and all the laws that permit medical aid in dying in 10 states and in Washington, D.C. — has residency requirements. This man would have qualified — except for that fact he lived in nearby Washington State.

The patient’s response, Dr. Gideonse recalled, was “stunned silence, deep disappointment.” A number of Dr. Gideonse’s primary care patients drive 20 to 30 minutes across the Washington border to his office in Portland. There, he can offer them any medical service he is qualified to provide — except that one — without proof of residency. And although Washington has its own aid-in-dying law, its southwestern region has few providers who can help patients use it.

Last month Dr. Gideonse, backed by pro bono lawyers and Compassion & Choices, an advocacy group for expanding end-of-life options, filed a federal lawsuit claiming that the residency requirement for Oregon’s aid-in-dying law is unconstitutional. “I realized how important this could be for patients seeking access,” he said.

The lawsuit is one of several legal and legislative efforts around the country to reduce the requirements that patients must contend with in order to receive aid in dying. In some states, lawmakers have already broadened the types of health care providers that can participate, or have shortened waiting periods or allowed waivers.

“I think of it as MAID 2.0,” said Thaddeus Pope, an end-of-life bioethicist at Mitchell Hamline School of Law who tracks such actions, referring to the acronym for medical aid in dying. “We found out there’s an access problem.” He added, “We set all these safeguards and eligibility requirements and they locked a lot of people out.”

Oregon led the shift in easing access, amending its law in 2019. The state previously required patients to make two verbal requests for life-ending medication, at least 15 days apart, to ensure that they had not changed their minds. Now, if the patient is unlikely to survive that long, their doctor can waive the 15-day waiting period.

“Fifteen days is everything when you are suffering,” said Kim Callinan, the president and chief executive of Compassion & Choices, which supported the change. “People who are eligible for the law are hitting roadblocks and barriers.”

In 2016, for example, Youssef Cohen, a political scientist at New York University, took the extraordinary step of moving across the country to use the Oregon law as he was dying of mesothelioma at 68. “He wanted the option to determine the end of his life,” said his wife, Lindsay Wright, who is an associate dean at the university.

To establish residency, the couple had to hurriedly sign an apartment lease, obtain an ID from the state motor vehicle agency, transfer medical records and arrange an immediate appointment with a Portland doctor to qualify for medical aid in dying. Dr. Cohen then faced the 15-day waiting period.

“He didn’t make it,” Dr. Wright said. “He died six days after we arrived. And he suffered.”

A 2018 study from the Kaiser Permanente health system in Southern California showed that about one-third of qualifying patients died before they could complete the process.

New Mexico, which in June became the most recent state to legalize medical aid in dying, has adopted a markedly less restrictive approach than other states. The largely rural state is the first to allow not only doctors but advanced practice registered nurses and physician assistants to help determine eligibility and write prescriptions for lethal medication. “In some communities, they’re the only providers,” said Representative Deborah Armstrong, a Democrat and the bill’s primary sponsor.

Although a doctor must also affirm that a patient is terminally ill, New Mexico patients can skip that step if they have already enrolled in hospice, as most do. The patient need only make one written request, rather than two or more requests, as other states require. A 48-hour waiting period between when the prescription is written and when it is filled can be waived. “People walk up and tell me how thankful they are to have this option if they need it,” Ms. Armstrong said.

California has simplified its 2016 law as well. In October, Gov. Gavin Newsom signed legislation that, starting in January, reduces the 15-day wait between verbal requests to 48 hours and eliminates the requirement for a third written “attestation.”

Similar bills died during the most recent legislative sessions in Hawaii, Washington and Vermont, but will be reintroduced, Ms. Callinan said. And in many states — including Delaware, Indiana, North Carolina, Virginia, Pennsylvania and Arizona — new aid-in-dying bills, if passed, will ease requirements for patients or expand the kinds of providers who may participate.

On the legal front, the Oregon lawsuit filed by Dr. Gideonse argues that residency requirements for aid in dying violate two sections of the U.S. Constitution, one barring state laws that limit the ability of a nonresident to access medical care and one prohibiting state laws that burden interstate commerce. The state must respond by Dec. 27.

“This is the only medical procedure we can think of that is limited by someone’s ZIP code,” said Kevin Diaz, the chief legal advocacy officer at Compassion & Choices.

A separate federal class action suit claims that California’s law, which like the others requires patients to self-administer the drugs that end their lives, discriminates against patients dying of neurodegenerative diseases that make it physically impossible to take medication without assistance.

The plaintiffs, charging violation of the Americans With Disabilities Act and California law, include patients with multiple sclerosis and A.L.S., also known as Lou Gehrig’s disease, and their doctors. (In denying a request for a preliminary injunction, a judge ruled in September that the plaintiffs were asking California “to cross the line to euthanasia.”)

Catholic organizations, anti-abortion advocates and some disability groups continue to oppose aid in dying. The California Catholic Conference, the church’s public policy organization, for example, argued in June that liberalizing the state’s law “puts patients at risk of abuse and the early and unwillful termination of life.”

But polls regularly report broad public support. Last year, Gallup found that 74 percent of respondents agreed that doctors should be allowed to end patients’ lives “by some painless means” if they and their families request it.

Liberalizing the laws will likely increase participation, the bioethicist Dr. Pope predicts. “We know from evidence around the world that if you reduce the waiting period, or allow waivers in certain cases, it materially expands access,” he said.

Experts do not expect a major surge, however. Even in states where the practice has been legal for years, aid in dying accounts for very few deaths, a fraction of one percent. Of those who successfully navigate the process, moreover, about one-third do not use the drugs and instead die of their diseases.

Still, should Dr. Gideonse prevail in his lawsuit and a likely appeal, residency requirements in other regions might also start to fall. That could allow New York or Pennsylvania patients to use New Jersey’s aid-in-dying law, for instance, or Maryland and Virginia residents to seek providers in Washington, D.C.

It is an outcome that would please Dr. Gideonse. “This is an action in support of a needed and very important service,” he said. “I’m optimistic.”

Complete Article HERE!

‘We Have to Make a Concerted Effort to Be Less Alienated from Death and Dying’

A conversation with Anita Hannig, author of ‘The Day I Die: The Untold Story of Assisted Dying in America’

By Richard Harris

Like taxes, death is still a certainty. But in America, the end of life isn’t what it used to be.

Today, one in five Americans lives in a state that permits medical aid in dying, sometimes simply called assisted dying. The idea is terminally ill individuals who have six months or less to live can apply for a medically assisted death to limit their suffering. And if they meet the criteria, they can have some say when they will take their last breath.

It’s been nearly 25 years since the country’s first assisted death law — Oregon’s Death With Dignity Act — went into effect. And since then, eight other states — Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico, as well as Washington, D.C., have enacted their own versions. What all jurisdictions with medical aid in dying have in common is the requirement that the patients must be of sound mind, have less than six months to live and they must be able to self-administer the lethal medication, prescribed by a physician, to end their lives.

Eleven other states have introduced medical aid in dying bills during the 2021-22 legislative session. It’s a growing movement that’s largely under the radar, much as death is in this society.

Assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

In the latest survey by Susquehanna Polling & Research, two out of three voters (67%) said if they “had an incurable, terminal illness, still had a sound mind but less than six months to live and met the legal requirements,” they would want the option of medical aid in dying.

As the baby boomers age, medical aid in dying is expected to be an even bigger issue in the years ahead.

Anita Hannig, associate professor of anthropology at Brandeis University in Waltham, Massachusetts, says assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

Indeed, the assisted dying laws in the ten U.S. jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups, among others.

For her new book, “The Day I Die: The Untold Story of Assisted Dying in America,” Hannig spent hundreds of hours over five years on the frontlines of assisted dying in the Pacific Northwest, including witnessing several deaths among those who availed themselves of the law.

Next Avenue: You’ve taken a very deep dive into assisted dying in America, a world few families have experienced. As a cultural anthropologist, you’ve gone from researching birth and the beginning of life in Ethiopia to the opposite end of the life cycle. Why the shift?

Anita Hannig: I was showing a film called ‘How to Die in Oregon’ in my Medicine and Religion class at Brandeis. It’s such a lovely documentary about the law in Oregon and about all those assisted dying volunteers who go and help people die. And I was immediately hooked and thought, wow, birth and death are like bookends. You have home births and home deaths. And so I was curious to go over to the other side. I was very surprised by what I found.

You must have a unique perspective on birth and death as an anthropologist studying assisted dying and as a new mother who also lost a child during an earlier pregnancy.

Definitely. We’re so used to thinking about birth and death as opposites when they’re actually very similar. One of the main figures in my book, a former nurse and longtime assisted dying volunteer in Oregon, Derianna Mooney, taught me that birth and death are both sacred transitions — from one state of being to another, from nonbeing into being and being into nonbeing. And culturally we revere one, but we shun the other.

“I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it.”

As a new mother, I can see people’s eyes light up when they watch us stroll by with our oversized pram. There’s so much positive attention. And all of this has to do with the fact that we love the beginning. It holds so much promise.

And yet we’re so afraid of the end. Similar to a birth, people do need help at the end of life. I love when Derianna says, “You’re going to the gate with them and you are letting them go, but you’re nurturing them through the gate.” What a beautiful vision.

One of the vexing issues surrounding death in our country especially is the role high-tech medicine plays in extending life — even when a longer life doesn’t always promise more quality. Is the assisted dying movement a sign that technology is frequently not making our final years better?

Yes. I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it. And it’s not just in the United States. My 87-year-old grandmother, who passed away in Germany in March, underwent radiation for her breast cancer when she was two weeks away from dying. I’m flabbergasted when I think about why we offer this extremely invasive treatment to somebody who is close to dying. Thankfully, she was soon admitted to a beautiful hospice by a lake to spend what became her final days.

I got interested in this topic when a friend’s husband, suffering from Parkinson’s and no longer able to feed himself, was forced to starve himself to death since he lived in Maryland, a state without a medical aid in dying law. For people consigned to such a horrific death, can a doctor truly say they are following the Hippocratic Oath that tells physicians to do no harm?

That’s exactly the conclusion that a lot of doctors who help patients die come to because in that case doing nothing — such as not helping somebody die — is doing harm. Physicians who are at the forefront of assisted dying say their task is to prevent suffering. And how you prevent suffering in many of these cases is to help somebody die. I always come back to this question: Who is telling these patients that they need to hang on? For what? For whom? Sometimes they themselves are ready to go, but they want to stick around for the family or because there’s a societal expectation to fight.

At the beginning of your book, you almost took my breath away when you were helping one of the volunteers opening the capsules of Seconal and pouring powder into a bowl in one room while the patient, Ken, was waiting in the next room to receive the lethal medication. What were your thoughts as you prepared the medicinal mix that you knew would end a man’s life?

It’s a really good question. Anthropologists have a tool in our toolbox called “participant observation.” And that means you’re never just an impartial observer because your presence alone already changes what’s happening in the room. In order to really relate and put ourselves and the reader into the shoes of these people, you have to bring yourself into the situation wholeheartedly and authentically. And often that means becoming a participant in what is happening.

It’s an extreme privilege to be invited into that kind of intimate space. So, it would have felt very off- putting to just be sitting in the corner taking notes. Everybody in the room is carrying this person over the threshold together. And so you just kind of take your cues from what’s happening.

You don’t want to feel like a voyeur?

Exactly. You want to be in the moment and going through all the emotions other people are going through. It’s a different way of being present that allows you to faithfully experience the death alongside the people whose loved one is dying.

But this must have been a difficult moment for you. In your book, you described “a heavy sense of transgression rise up inside” of you as prepared the lethal medication.

You know what I think it is? It’s the feeling of internalizing some of the stigma that we carry and some of the taboo with which we treat death. And so being part of somebody’s death in this participatory way makes you ask, ‘Am I doing something wrong? Am I, in some bizarre way, enabling that person to die?’

But even if I hadn’t been there, things would have gone probably in a very similar way. I think it’s the cultural baggage that we feel around what it means to hasten the end of your life. Everyone there knew this is what Ken wanted. He chose this with one-hundred percent of his cognitive abilities. His wish was to be delivered from this world and you are enabling that transition.

Among the deaths you researched but didn’t witness was that of Louis, who was an outlier. His experience turned into a nightmare for the person who supervised his assisted death. Louis actually woke up after taking the lethal medication. What happened?

“Everybody in the room is carrying this person over the threshold together.”

Medicine is a human art and as an art, is prone to failure. And it just goes back to the ways the laws are written. They insist on self-administration. But when you are limited that way, you’re going to run into a bunch of problems such as people with gastrointestinal issues who can’t quite absorb the medication. And then you have people who can’t physically self-administer, like a lot of folks with ALS or other illnesses that affect their mobility or their hand range or who can’t drink something on their own or push the syringe on their feeding tube.

And people are getting a little more innovative with things like rectal catheters now, but there’s still a requirement that this has to be an act of volition — you have to be the one to push the plunger on your feeding tube or catheter, what have you. And in almost all other countries, you don’t have that requirement. A doctor can administer if you’re unable to administer yourself.

So after immersing yourself in this world of assisted dying for five years, whats your takeaway from this experience?

As a society, we have to make a concerted effort to become less alienated from death and dying. Of course, one could ask how alienated are we when the biggest newspaper in the country, the New York Times, can post images of corpses in Ukraine on its front page? But that doesn’t create closeness or connection. That just creates more fear.

Ideally, I think everybody should have to take a class on death and dying that could cover estates, hospice, and what life-extending procedures there are. In my death and dying class, I talk about people in South Korea who fill an entire gymnasium with coffins and the public comes in and gets inside the coffin to simulate what it would be to die. And they come out of this experience with a totally new zest for life.

This is what contemplating our mortality can do for us. It can take away some of the fear and some of the surprise when a loved one passes away because you will have thought about it in advance. I’m not saying assisted death is the way to go for everyone. We really need to pay more attention to end-of-life issues and prepare for the inevitable and have all of that be less stigmatized.

Book over of "The Day I Die" by Anita Hannig. Next Avenue, medical aid in dying

As the country’s pandemic death toll inches toward one million, has America’s attitude toward death changed at all?

Certainly it’s brought death into the lives of lots of people but not in a way to make them feel more connected to death. Many people weren’t able to see their loved ones in assisted living homes or couldn’t go to the funeral or they weren’t allowed to be present at a nursing home.

When I see the way that we’re tumbling back into life as it was before the pandemic, I don’t know that we’ve really thought critically about death. We just have this big fear-based relationship with death and it’s not lifting the curtain, really. I think people are thrilled to have escaped the pandemic. They see themselves on the other end of that mostly unscathed.

They dodged a bullet?

That’s exactly what it is. But I don’t think it’s made us really contemplate our mortality that much more.  

So what will give you a signal that something has shifted in the American attitude toward death?

That people don’t automatically associate the topic of death with fear. And when people begin to realize what I witnessed and write about in the book — some of the empowerment that can come from determining the end of your life and even some of the joy. I hope I’m not out of line to call it joy. When I think of the deaths I witnessed, they weren’t unambiguously sad. There were also serene and heartfelt moments, some laughter and families felt at ease because their loved one wanted to die and they were helping them.

And those who chose to end their lives wanted their death to resonate beyond themselves and their families. Jean, one of the people whose death I witnessed, unbelievably spent the last few minutes of her life promoting her chosen way to die. I still remember her words:

“There are all these baby boomers who will want a better way to die. Our society doesn’t recognize that yet. They will someday.”

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