Lantern is a startup looking to ignite a conversation about how to die well

By Danny Crichton

America is a land of paperwork, and nowhere is that more obvious than at the end of someone’s life. Advanced care directives have to be carefully disseminated to healthcare providers and strictly followed. Property has to be divided and transferred while meeting relevant estate laws. And of course, there are the logistics of a funeral, cremation or other option that has its own serious complexities, costs and choices.

The worst time to figure out how to die is when you die. The best time to figure it out is precisely when you don’t have to.

For New York City-headquartered Lantern, the goal is to initiate those conversations early and give its users significantly better peace-of-mind, particularly in these dolorous times.

The company offers essentially a “how-to” platform for beginning to prepare for end-of-life, offering checklists and monitoring to ensure that the vast majority of details are figured out in advance. In some cases, the startup will handle the underlying details itself, while in other areas like estate planning, it works with partners such as Trust & Will, which we have profiled a number of times on TechCrunch.

Right now, the company has two plans: a simple free one and a $27 / year plan that tracks your progress on end-of-life planning and allows you to collaborate with family, friends or whoever else needs to be part of your decision-making. The company is in the process of adding other à la carte options for additional fees.

Last month, the company raised $1.4 million in a seed round led by Draper Associates with a few other firms involved. Earlier, the company raised a pre-seed round of $890,000 from the likes of 2048 Ventures, Amplify and others, bringing its total raised to date to $2.3 million. The company is organized as a public-benefit corporation and was founded in September 2018, and first launched a year later.

For founders Liz Eddy and Alyssa Ruderman, Lantern was an opportunity to tackle a looming problem in a compassionate and empathetic way. “I started my first company when I was 15,” Eddy, who is CEO, said. That company focused on dating abuse and domestic violence education for high school and later college students. “I really fell in love with the pace and variety of starting something new, but also in creating conversations around topics that people really don’t want to talk about and making it more palatable and comfortable,“ she said.

Later, she joined local suicide prevention nonprofit Crisis Text Line, which has an SMS-based network of crisis counselors who are trained to calm people and begin their process of recovery. She spent more than six years at the organization.

As for Ruderman, who is COO of Lantern, she most recently spent two years at Global Citizen, a nonprofit organization focused on ending extreme poverty. The two connected and incubated Lantern at startup accelerator Grand Central Tech.

The idea for better end-of-life planning came from personal experience. “I lost my dad when I was in elementary school,” Eddy said, “and saw firsthand how loss and grief impacts a family financially, emotionally, logistically, legally — every aspect.”

Today, many of these processes are offline, and the online products mostly available today are focused on individual elements of end-of-life planning, such as estate planning or selecting and purchasing a casket. Eddy and Ruderman saw an opportunity to provide a more holistic experience with a better product while also initiating these conversations earlier.

That pre-planning part of the product was launched just as the pandemic was getting underway last year, and Eddy said that “we had a sort of a really interesting launch where people were starting to come to terms with their own mortality in a way we hadn’t seen in a very long time.” Typical users so far have been between 25 and 35 years old, and many people start planning when they have a major life event. Eddy says that the death of a family member is an obvious trigger, but so is having a baby or starting a company.

One aspect that Eddy emphasized repeatedly was that having a will and pre-planning for end-of-life are not equivalent. “Even if you don’t have a dollar to your name after you pass away, there are a ton of other things that your loved ones, family members, whoever’s responsible has to consider,” she said.

From a product perspective, there are some nuances compared to your more typical SaaS startup. For one, the company needs to engage you regularly, but not too frequently. Unlike, say, a wedding, which is a single event that then is over, your documents and directives need to be occasionally edited and updated as a user’s life circumstances change.

Beyond that, one of the largest challenges with a product that talks about death is building a connection with a user that doesn’t seem cold, and, well, Silicon Valley-like. “Even as a product that is entirely virtual, making sure that you really feel that human connection throughout” is a high priority, Eddy said. “We use a lot of empathetic language, and our imagery, all of the illustrations are done by illustrators who have lost someone in memory of the person who’s lost.”

Longevity startups may remain a thesis for some VC investors, but handling the end — no matter when — is an activity every person faces. Lantern might shine just a bit more light on what is otherwise a debilitating and scary prospect.

Complete Article HERE!

These conversations are among the hardest I have had as a doctor

Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

By Julia Corfield

It’s a cold Saturday morning in Melbourne and I am a doctor at work in a palliative care unit. I have just reviewed one of my patients, whose body is beginning to reveal some of the tell-tale signs of dying.

His son stands over him and sadly remarks that “this is a bad time to die”.

With strict visiting restrictions firmly in place across Melbourne, there is a very real chance that his father will die alone and he knows it. This is the new normal.

In a state of disaster, there are a set of rules and visiting restrictions for families and friends of those dying in a hospital setting. These restrictions vary slightly between health services, but the message is the same: as few visitors as possible, for as short a time period as is reasonable.

For months now, hospital staff (myself included) have been chanting the mantra of seemingly arbitrary visiting windows, maximum numbers of visitors per patient and numbers of visitors permitted at the bedside.

In recent times, I have found myself asking questions such as “do all six of your siblings need to visit?” or “could your grandchildren say their goodbyes via FaceTime?”. These conversations are among the hardest I have had as a doctor.

Many find these new rules unacceptable, and with good reason. Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

However, these are not normal times, and a balance must be struck between compassion and safety. Across the world, and now in Victoria, we know that many people with COVID-19 are dying alone; but so are those without COVID-19. Both are tragic realities.

Under normal circumstances, achieving “a good death” is laden with obstacles, let alone in a pandemic. An inherent challenge is that a good death is an individualised experience, reflecting the diversity of the human person.

There are some commonalities across what constitutes a good death, and the company of friends and family features almost universally.

A current patient comes to mind — a woman in her 70s dying of lung cancer — who tells me almost daily that her breathing is bad but the feeling of loneliness even worse. She would like to see her grandchildren, but no children are allowed in the hospital.

Her brother visits, but the allocated two-hour visiting window is not long enough to fill the void created when faced with one’s own mortality. And so on. Her story is not unique.

Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human. Death is normal, but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.

Ultimately, how we live and how we die tells us about society as a whole. Today, people die alone to protect society and this at least may be a small source of solace. Their strength and determination to push forward and adapt to this strange new world is a testament to the human spirit.

I hope, though, that those dying in this COVID-19 world know that their sacrifice has not gone unnoticed. Every day, their struggles are seen and felt. Many have had to forgo the so-called good death, and that is the undeniable truth.

Complete Article HERE!

Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

Why Canada Could Be Next To Allow Psychedelic Therapy

(And How It’s Already Changing Lives)

Canada’s federal health minister has recently granted patients, therapists and doctors with exemptions to use psilocybin mushrooms for therapeutic purposes

by Amanda Siebert

Canada has an international reputation for progressive health policies, take for example its publicly funded healthcare program and its assisted dying laws. It also led the way in drug reform when it became the first G7 country to legalize cannabis in 2018.

But in the face of a worldwide pandemic, a national overdose crisis, and mounting evidence to show that greater access to both psychedelic and other restricted drugs could have positive public health outcomes, it’s fair to say some of the country’s regulations around restricted substances are outdated.

Now, as a handful of patients and more recently doctors and therapists have been granted exemptions to use psilocybin, the nation’s federal health agency is considering making changes to existing policies that could open the door to much more than magic mushrooms.

In 2020, a handful of firms including non-profit organizations and publicly traded companies have worked with Health Canada to encourage greater access to psilocybin and other psychedelic therapies. While one has gone the route of using existing legislation to help individuals apply for exemptions, another is encouraging policy changes that would allow doctors to seek access to restricted drugs for their patients.

‘The Unknown Of What Can Happen After You Die Doesn’t Feel So Unknown To Me Anymore’

One of the earliest studies to come out of the so-called psychedelic renaissance was conducted at Johns Hopkins University in 2016, and sought to examine how psilocybin would affect depression and anxiety in patients suffering from life-threatening cancers. It found that just a single dose of psilocybin left subjects with longstanding relief, with 78% experiencing lower rates of depression and 83% experiencing lower rates of anxiety six months after receiving the treatment.

When Thomas Hartle, a 52-year-old Saskatoon resident with stage four colon cancer read the results of the study, he says he “felt like they were too good to be true.”

“But when you suffer from anxiety, you really look for whatever sources of relief you can get,” he says. Hartle enlisted the help of TheraPsil, a non-profit organization based in Victoria, B.C., to try and access psilocybin therapy for himself. Using a subsection of the Controlled Drugs and Substances Act that allows the health minister to grant an exemption for medical or scientific purposes, TheraPsil has so far assisted dozens of Canadians, including terminally ill and clinically depressed patients, as well as doctors and therapists, in the application process.

In August 2020, Health Minister Patty Hajdu granted the first exemptions to four Canadians suffering from end-of-life anxiety. One of them was Hartle.

The father, husband, and IT technician says his anxiety is “specialized to the existential kind and doesn’t extend to public speaking,” so he’s more than happy to share his experiences with psilocybin. Before his first treatment, he prepared extensively with a therapist, and has since undergone a subsequent session. Without hesitation, he says the experiences have changed his perspective on death and dying.

“What it’s changed the most for me, is that the unknown of what can happen after you die doesn’t feel so unknown to me anymore. Most of how we define ourselves is our experiences and memories and things like that. In the psilocybin experience, my consciousness existed in ways that had absolutely nothing to do with anything in this life,” he says.

“To exist in another state that has nothing to do with my identity here, and to feel comfortable and serene in that state tells me that it’s possible to have some sort of continuation of consciousness that goes beyond our experience here.”

Hartle adds he feels more empathy towards other people since his initial treatment, and says his family has noticed he uses more emotional words in his speech. As a naturally analytical thinker, he says he’s also welcomed a shift to a more creative mindset.

Beyond the positive mental benefits he’s experienced, Hartle says psilocybin also helps to relieve pain associated with migraines, which he’s suffered from since he was a child. “When I compare it to most of the other treatments that I have gone through over the last few years, psilocybin is like the opposite of side effects,” he says, laughing.

Doctors Can Access Psilocybin, Too

Dr. Emma Hapke is TheraPsil’s co-chair of research and one of 16 doctors, nurses, therapists and social workers recently granted exemptions to take psilocybin in preparation for work with patients. She is part of a committee at TheraPsil developing a training program for psychedelic assisted psychotherapy, which she hopes to kick off in 2021.

“We feel that it’s essential that therapists themselves have their own experiences in a non-ordinary state of consciousness, to be on the receiving end of that type of therapy so they can then guide others to do the same,” she says.

She emphasizes that while psychedelic substances have been shown to provide benefit for people suffering from an array of mental health conditions, it’s imperative that any psychedelic experience be paired with therapy for maximum and longstanding relief.

“The molecule in and of itself isn’t what’s healing—it’s the whole package of being in a healing relationship with a therapist and going into the non-ordinary state with psilocybin to access different parts of the psyche,” she says. “If the experience is not integrated, it’s hard for it to lead to lasting change, and so it’s really important that we’re not just talking about a psychedelic. We’re talking about psychedelic-assisted therapy.”

Spencer Hawkswell, TheraPsil’s CEO, says before August 4, seeking exemptions for terminally ill patients felt like an uphill battle. Today the mood has changed, and there is a greater sense of optimism among his team.

“I never thought I’d say that it was easy, or that Health Canada has been incredibly cooperative,” he says. “These [patients] are empowered Canadians, and we do have rights and systems that work for them. Just to have that affirmation is pretty amazing.”

Recognizing the utilitarian nature of Canada’s approach to mental healthcare and drug policy, Hawkswell says that while the current system tries to meet the needs of most, it falls short. “What TheraPsil is doing is showing that there are options beyond the current policy regulations and the norm of healthcare in Canada.”

Numinus Advocates For Special Access Program Reform

Health Canada’s Special Access Program (SAP) allows healthcare professionals to request restricted or otherwise unavailable drugs for patients who have tried existing treatments and found them to be unsuccessful. In theory, the SAP should allow doctors to request access to drugs like psilocybin, MDMA, and LSD. That changed in 2013, when under Conservative Prime Minister Stephen Harper, accessing restricted drugs through the SAP was prohibited. Since then, the only way for patients to access such substances is through clinical trials.

On December 12, Health Canada announced its intention to reverse the regulatory changes made in 2013, and initiated a 60-day comment period seeking public feedback. Dr. Evan Wood, chief medical officer at Numinus, has been advocating for changes to the program since early 2019.

Wood says by amending the SAP provision on restricted drugs, Health Canada will better align itself with the Helsinki Declaration, a set of international ethical guidelines that suggest (among other things) if a patient accesses a restricted drug through a clinical trial and finds it to be beneficial, they should be entitled to receive ongoing therapy. Currently, if a Canadian were to access a psychedelic substance or another restricted drug though a clinical trial, even with the support of a physician, they would not be able to continue to access it.

“In my view, it’s really just about stigma and the cultural baggage associated with these molecules,” Wood says. “This is bringing Canada in compliance with those international ethical guidelines, and kicking the door open a crack for Canada to be a real world leader in this area.”

While Wood acknowledges that the Covid-19 pandemic has rightfully taken the majority of Health Canada’s attention in 2020, he’s glad to see that psychedelic-assisted psychotherapy has risen to an area of needed focus, and gives full credit to the agency for proposing the regulatory reversal.

If the change to the SAP is made, Wood says access to novel psychedelic treatment has the potential to increase significantly, as interested patients would simply need to find a doctor willing to apply for access to the drug on their behalf. Applications would then be judged on an individual basis, but would be less arduous than applying for an individual Section 56 exemption, and perhaps even eliminate the need for that process entirely.

For companies like Numinus, Wood says the changes would enable them to better establish the physical infrastructure of their businesses, to train staff, and “to do all of the things that are necessary to do this kind of work safely.”

“When you put the known risks alongside the known safety of these substances, it’s a bit of a no brainer,” he says. “It’s not going to be a cure for everybody, but even to be talking about a ‘cure’ in the context of mental health challenges is a total paradigm shift.”

Some might argue that decriminalization is the obvious next step, however Health Canada isn’t alluding to that just yet. In an email, a spokesperson for Minister Hajdu said the agency “thoroughly reviews all requests for exemption and makes decisions after taking into account the risks and benefits.”

“We still have much to learn about the risks, which is why the sale and possession of psilocybin is still illegal. Until there is a sufficient evidence base, Health Canada will review each request for an exemption on a case-by-case basis.”

Complete Article HERE!

End-of-Life Experts Call for Expansion of Patient-Centered, Goal-Concordant Care

By Holly Vossel

A deadly worldwide pandemic has helped to expose pitfalls in a broken health care system, drawing increased awareness and attention around the delivery of serious illness and end-of-life care, according to hospice and palliative care experts speaking at End Well’s Take 10 virtual conference.

The virus has claimed more than 1.6 million lives globally since its onset, according to a recent World Health Organization report which stated that the United States continues to bear the brunt of the pandemic’s effects, accounting for 86% of new deaths worldwide in the last week alone. According to a number of health care stakeholders, the government and the health care system itself hasn’t sufficiently adapted to meet patients’ needs during the crisis.

“We’ve been putting our elderly and disabled in solitary confinement for months, and that was understandable during the first few weeks where we didn’t understand anything about the virus or how to keep people safe. We saw entire units where elderly people and disabled people died, but now we know how to keep people safe,” said Atul Gawande, M.D., a surgeon, writer and public health leader, at the End Well event. “I myself have family with serious health issues and they need long term care, but we’re told we have to sign away the possibility that we’d ever see them again, that we’d ever hug them again and that’s just unacceptable. They won’t provide the [personal protective equipment (PPE)] and the training to make such things as possible, and that is outrageous.”

Gawande is founder and chair of Ariadne Labs, a joint center for health systems innovation, and of Lifebox, a nonprofit organization aimed at making surgery safer globally. He is also co-founder of the Massachusetts Serious Illness Care Coalition and serves as board chairman of Haven Healthcare. Gawande is among the providers calling for fundamental changes to the health care system.

A key component of that change would be to promote end-of-life and goals-of-care conversations among patients and families. Gawande cited surveys conducted by the Massachusetts Serious Illness Care Coalition, an organization he founded, which indicated that only about 50% of people who have a serious health condition have discussed their wishes with their loved ones. Only 25% have had such conversations with their clinicians.

“When they have those conversations they’re not at all confident that those wishes will be followed. That should be an outrage,” Gawande said.

COVID-19 has disrupted the health care system as providers faced lack of protective resources, staffing issues and revenue losses. Hospices have been pummeled by the disease’s spread, taking hits to operations and finances and facing difficulty accessing facility- and community-based patients.

Some of the roadblocks to quality end-of-life and serious illness care often stem from social determinants of health, lack of awareness around hospice care, and racial divides in accessible care. While these issues are gradually coming to the forefront of discussions in the end-of-life space among clinical, business and policy leaders, stakeholders are renewing calls to accelerate a reorientation of the health care system towards patient-centered, goal-concordant care.

“We all deserve a system that we’re not just tolerating,” said Mark Ganz, president and CEO of Cambia Health Solutions at the End Well Take 10 event. “Let’s resolve as we accelerate out of this curve called 2020 that we take some of the difficult things we’ve seen and talked about and we turn it into a thing of light. We have the opportunity to invent the systems that allow us to truly see the patients and their loved ones in a new way. We need to act and act now.”

Complete Article HERE!

Discussing Death with Dignity

When both of my parents entered medical crisis in a short span of time around age 90, I realized that the end of their lives was in the foreseeable future. I had never envisioned what the end of life process would be like, but I knew that I would not allow them to suffer, and that I would protect their dignity. One of my greatest concerns was whether or not I could deliver their wishes for a dignified peaceful death.

I had heard of death with dignity, but honestly I did not know what it was. I had only heard what others said: that it offered a suicide pill, that it was risky to allow people to kill themselves, that there would be no regulation and that it would become too easy to access. I quickly realized that the words chosen were, at minimum, emotional and sometimes escalated to highly charged.

Curious, I attended a presentation a friend delivered for local college students studying geriatrics. I was stunned at what I learned about the medical aid in dying (MAID) program that she was spearheading. The program was not any of the things that I had heard. The guidelines were strict, the oversight even stricter and the eligibility criteria very specific and demanded proof of the patient’s mental capacity.

Most surprising to me was the fact that approximately 30 percent of patients never take the medication. They either die of natural causes before the medication has been delivered or before their planned administration date, or they change their minds as they didn’t experience the anticipated decline in the quality of their life and chose to die naturally. In essence, the program gave the patient control over their own end-of-life experience.

Then recently, I listened to Deborah Kan interview Kelly Bone, who has been diagnosed with early onset Alzheimer’s and who hopes to utilize the services provided by death with dignity, which is currently unavailable in the United States to those diagnosed with dementia. The interview illuminated the misunderstanding and inaccurate terms that surround the topic of death with dignity: euthanasia, assisted suicide and medical aid in dying.

Euthanasia is performed, and medication administered, by a trained professional with explicit consent and is illegal in most countries, including the United States. Assisted suicide is a process during which the patient plans for administering a medication to themself. Death with dignity, also referred to as medical aid in dying, allows terminally ill adults to request and, after being deemed qualified and mentally capable, receive a prescription for medication that they may choose to take to bring about a peaceful death.

Dr. Grube, National Medical Director for Compassion and Choices, wrote in a column titled, Ten Facts About Medical Aid in Dying, “Language matters: medical aid in dying should not be called ‘suicide,’ or ‘assisted suicide’.” He continued, “Legally, in all jurisdictions where medical aid in dying is authorized, ‘it is not suicide, homicide, euthanasia, or mercy killing’.’”

While those opposed to the service tend to define it based on who administers the life-ending medication, the medical community defines it on the characteristics of the people who take those actions.

In the Ten Facts article, David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who (die by suicide) resulting from mental illness from those of terminally ill persons who request medical aid in dying.

“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”

I wondered about the difference between suicide, the intentional taking of one’s own life usually as the result of mental illness and often with a feeling of hopelessness, and consciously choosing to end your life once certain criteria have been met, such as functional limitations, in order to preserve dignity during the end of life process. Medical aid in dying does not involve suicidal tendencies or the desire not to live. It cannot be executed spontaneously but instead requires due diligence by multiple medical practitioners, under strict legal purview, and the legal prescription of medication prepared by a licensed pharmacist. 

One is an event involving isolation, desperation and trauma, resulting in physical death. The other may be inclusive, allowing the patient to be surrounded by family and love, and is aimed at creating a peaceful transition at the end of life. The decision to suicide is final, while the decision to pursue medical aid in dying provides an option, not a mandate. Even after having received life-ending medication, the patient can change their mind if their personal criteria are unmet, such as declining physical or intellectual health that the patient perceives would cause a loss of dignity.

Because Bone is ineligible for death with dignity in the United States, she was asked whether she considered suicide as an alternative. She said, “To me, that is not dying with dignity. Going and doing it somewhere in my house all clandestine, not being able to say goodbye to my husband and leaving him with all that guilt, having him find the body and things like that, that to me is not a good way to go. It’s not fair to my family members.” 

To Bone, “dignified” is consciously making the decision and discussing it with her family members and doctors. During a personal call with Bone, she added: “I don’t want to suicide — I love my life!”

In the end, the option for medical aid in dying is all about dignity. Dignity is the state of being worthy of honor or respect. To provide dignity is a kind of grace, a kindness or mercy. When one wants to die with dignity, is it not really the grace and the mercy it offers that is sought?

I wasn’t interested in understanding the language surrounding death with dignity until I had taken the walk to the end of life with several loved ones, while fearing that I could not deliver the dignified death they desired. Understanding the words doesn’t mean that I have to like or dislike the option, only that I now have the clarity to make informed decisions that fit my beliefs. It grants me the compassion to accept the reasons why someone else might want to make that choice. I understand that all Kelly wants is to have the option for a peaceful end of life if her disease progression doesn’t allow for it. 

I think that everyone wants a peaceful end of life. I don’t know what decisions I will make when I am faced with my end of life, but I know that the end of life deserves the dignity, as well as the grace and mercy, that our culture so readily denies it.

Complete Article HERE!

What you need to know if you or a loved one requires end-of-life care

By Ben Poston, Kim Christensen

Conceived as an end-of-life option for terminally ill patients, hospices provide palliative care, medications, nursing services and counseling for those diagnosed with six months or less to live.

The number of U.S. hospices has roughly doubled in the last 20 years, as more for-profit providers vie for a share of $19.2 billion a year in Medicare spending that covers hospice care. More than 1.5 million Medicare beneficiaries now receive care from some 5,000 hospices, nearly a quarter of them in California.

While hospice has been a godsend for millions of dying Americans and their families, a Times investigation found that intense competition for new patients has spurred billing fraud and other illegal practices, including falsified diagnoses and kickbacks to unscrupulous doctors and recruiters who target prospective patients at retirement homes and other venues.

The Times also found hundreds of instances in which California hospice patients were harmed, neglected or put at serious risk, their mistreatment sometimes exacerbated by serious gaps in government oversight.

What are the benefits of hospice care?

Hospice is intended to provide comforting, compassionate care and a range of support services for terminally ill patients and their families. In addition to nursing and medical care that includes pain management, prescription drugs and supplies, patients receive spiritual and emotional support, help with personal hygiene and respite care for family caregivers.

Most hospice patients receive care in their homes, including assisted-living settings and nursing facilities.

How do I choose a hospice?

There’s no set formula for choosing a hospice, although experts suggest discussing options with your personal physician and seeking recommendations from friends and relatives whose loved ones have had good experiences.

You should also interview any prospective hospice, asking questions about its licensing, which is required by the California Department of Public Health; whether it is certified by Medicare; when it was last inspected and whether violations were found; the range of available services; the makeup of the hospice care team and the roles of its doctors, nurses and others; and the role the hospice expects family members to play in a patient’s care plan.

Several industry and advocacy groups offer online guidance, including the National Hospice and Palliative Care Organization, which provides a worksheet and a list of questions.

How do I know if a hospice is reliable?

There is no one place where consumers can go to make a comprehensive comparison of local hospices — a gap that patient rights advocates have long criticized.

A variety of online sources provide information about hospice care, but each has limitations. Medicare’s hospice comparison site allows consumers to search for providers by ZIP Code or name, but has scant information about quality-of-care issues and inspections.

The California Department of Public Health has a searchable tool called Cal Health Find Database, which provides users with inspection reports when serious violations are uncovered back to 2017. It also allows consumers to compare quality metrics of up to three hospices at a time, but it doesn’t provide a rating system for providers. The results of inspections by accrediting agencies are not included on the site — a significant problem for consumers in California, where more than 80% of hospices contract with accrediting agencies rather than the state to conduct certification inspections once every three years.

Another resource that is more difficult to navigate is an interactive site maintained by the Centers for Medicare and Medicaid Services. The site includes copies of complaint investigations and a look-up function that allows users to compare the number of serious violations at hospices in California and other states.

What red flags should I look for?

Be on the lookout for any hospices that have been cited in recent years with serious violations. In the language used by Medicare, these include “condition-level” deficiencies or “immediate jeopardy” situations, which are considered the most severe. Also, hospices can be cited for failing to certify that patients are terminally ill, which is an indication of possible fraud.

If you have the name of a hospice administrator, which can be found on the state public health department’s website, you can find out if that person has been excluded from receiving federal healthcare payments on a site run by the U.S. Department of Health and Human Services’ Office of Inspector General.

If I’m not happy about my hospice, where do I complain?

If you can’t resolve your issues with the hospice, the California Department of Public Health investigates complaints, which can be filed online — but not necessarily with satisfying results.

You may also file a complaint about Medicare providers directly with the federal agency or with the California Senior Medicare Patrol, a federally funded statewide hotline to help Medicare beneficiaries prevent, detect and report fraud.