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!

Film ‘The Elephant in the Room’ Shines a Light on Palliative Care

By Holly Vossel

Public misperception is a barrier between patients and palliative care. Based on the true story of a nurse practitioner’s experiences with patients and families facing serious and terminal illnesses, the film “The Elephant in the Room” depicts the patient-centered interdisciplinary care that so many seriously ill patients need.

The film was written by Bonnie Freeman adapted from her novel, “Resilient Hearts: It’s All About the Journey,” based on true stories of her experience as a supportive care nurse practitioner for the Department of Supportive Care Medicine at City of Hope Medical Center located in Los Angeles. Shot throughout 2017 and directed by husband and photographer Allen Freeman, the book turned film brings an inside look into goal-concordant and patient-centered care through the eyes of those who provide it.

“Bonnie wanted to educate, that was her passion at the root of it all,” said Executive Producer William Dale, chair in Supportive Care Medicine at City of Hope. “She just wanted to make sure that our message got delivered. She had aspirations for us to break out of our little crowd that care about the cause, care about supportive care and palliative care.”

Dale also helped provide funding to support the film’s making.

According to producers, Freeman passed “unexpectedly and suddenly” before the film completed on April 26, 2018. She played an integral and hands-on role during filmmaking, working closely with Niko Vitacco, who played the lead role of nurse practitioner Michael Lafata. 

Films like the “The Elephant in the Room” could help to raise awareness and improve understanding of palliative care. The medical comedy-drama, walks viewers through end-of-life care through a provider’s lens, including goals-of-care conversations. The comical drama is currently available on Amazon Prime.

As many as 71% of people in the United States have little to no understanding of what palliative care is, including many clinicians in a position to refer patients to palliative care or hospice, according to A Journal of Palliative Medicine study.

While no standardized definition exists for “palliative care,” the U.S. Centers for Medicare & Medicaid Services (CMS) defines the term as “patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information and choice.”

Roughly half of community-based palliative care providers in the United States are hospices, according to the Center to Advance Palliative Care (CAPC). While a growing number of hospices are diversifying their service lines to include palliative care, many struggle to sustain and grow programming due to a widespread lack of awareness. These services remain relatively unknown and misunderstood among the general public, as well as within medical communities.

“Bonnie knew that storytelling was a way to help improve end-of-life care,” said Vitacco, actor and co-producer of Absolution Films. Vitacco read the following quote Freeman initially wrote to pitch the film. “‘I realized many health care providers did not know what we provided and the community was even less informed. I felt a film would reach a broader audience and could be a tool to promote discussions about effective ways to communicate the need for compassion and show the difference a dedicated palliative care team can make in the lives of each other, their patients and their families.’”

The film strikes a strong chord as the world comes face-to-face with a deadly pandemic. The COVID-19 outbreak has brought serious illness to the forefront, with the World Health Organization reporting more than 1.6 million lives lost globally since its onset.

“Something within this script resonated so strongly with me. I saw it as an opportunity to help people on a larger scale, to share a story that was meaningful and bigger than me,” said Vitacco. “Even more so now in a world where humanity can sometimes feel lost, this film can show the type of the side of people that we all want to become but sometimes struggle to be.”

Despite heightened focus, palliative services remain underutilized throughout the globe. The World Health Organization reported in August that only 14% of people who need palliative care currently receive it. Many countries ranked low in an international review of length of palliative care received by people with life-limiting and terminal conditions, including the United States and Australia.

Increasing awareness around the benefits of serious illness care was a stated goal for the filmmakers.

“Palliative care is still considered new within the medical world,” said Vitacco. “Our mission was to make it universally known and share it with not only the professionals, but the public as well to show them what is readily available to them.”

Initially released in Middle Eastern countries, “The Elephant in the Room” came out in Australia, Canada, Germany, India, the United Kingdom and the United States on Amazon on Aug. 21, 2020, representing a broader reach for the film’s universal message.

“The subject is universal and we just wanted to release it wherever we could,” said co-producer Tamir Gedalia of Absolution Films. “For me, the message was that we need to change the way we treat terminally ill patients. It’s universal in every country. There is no country that doesn’t have this kind of love and treatment, there is no relation to a village.”

The film’s use of the term “supportive care” to describe end-of-life care was deliberate. The term is becoming more common in the field as providers seek to avoid stigma associated with the words “palliative” and “hospice.” Numerous organizations rebranded in recent years to remove those words from their company names.

Scenes show providers both engaging with patients and behind closed doors in interdisciplinary team meetings. The film’s team includes the supportive care department chair, oncologist, neurologist, pediatrician, pharmacist, nurse practitioner, social worker, chaplain and a staff psychologist who collaborate from the point of the patient’s admission through his passing. The social worker role of Valerie Howard was played by Rupinder Sidhu, a licensed social work program specialist at City of Hope.

Filming took place onsite for 12 days at City of Hope to minimize disruption to patients and operations, according to Dale, who expressed reluctance at opening the medical center’s doors to filming but ultimately valued an authentic setting.

“My hope is that people elsewhere understand the field and get entertained, but then also imbibe this message that it’s about how you take care of each other and take care of yourself,” said Dale. “We’ve all had those moments as providers when we’re in too deep with patients and families and we’ve gone across that line. The team did an amazing job dramatizing that, and I think that’s what Bonnie wanted and it’s my deepest goal for the field and for the film. This is more than we could have expected and we couldn’t have hoped for a better product that’s actually getting seen.”

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!

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.

Writing Into and Out of My Long-Distance Grief

Mourning on a wintry day at the end of a year that has all been winter.

By

I walk out, steering the stroller with icy fingers. I pass the house that always appears as if someone is moving in or out, the gray house with a garage full of ugly toys, the white house with an attractive couple who dine every day at 7 p.m., which I know because I peek in on my daily quarantine walks, comforted by the sight of the woman’s top bun and the man’s beard as they sit across from each other at a farmhouse table.

Today is winter. A crisp, cold, sunny day, the kind that makes you think for a few hours that perhaps this — the end of the year in Michigan — isn’t too bad. But when I reach the park, it is all sorrow. Each blade of grass, shimmering in December light, is sorrow. The crackle of each remaining leaf is sorrow.

Muslims recite the azan — the call to prayer — in the ear of every newborn, but we leave it out of the final prayer for the deceased. The point is that our time here is as brief as the moment between the call to prayer and the start of prayer. Now, in the park, the journey each drop of melted snow makes from branch to wilted grass is sorrow.

For those, like me, living far from home, there is a worry so common it is banal: the Call. The call that comes when a loved one is hurt or dying. We brace ourselves against it, convinced that anticipation is inoculation against grief. To this day, I sleep with my phone on silent only when I am back in Pakistan; home is the place where late-night calls don’t seize the ground beneath you.

In Michigan, when the phone rings in the middle of the night, it’s usually just a wrong number or a relative who thinks America is five hours behind and not 10. Sometimes though, it is a sunny morning, the house smells of coffee and the baby is playing with tiny toes when the phone rings, and something in you, that animal that senses danger before it manifests, tells you that it’s bad news.

My husband once asked my father if he believed in saints. Abbu responded that if there was any saint in his life, it was his last surviving uncle, Chacha Jee. On Dec. 1, Chacha Jee died, his lungs, liver and heart collapsing in quick succession in an emergency ward in Pindi, Pakistan.

The official diagnosis was pneumonia, but the symptoms were close enough to Covid-19 for them to transfer him to the Covid ward. No family was allowed to visit him in his final moments. Globally, 1.6 million people have died of the disease this year. Many were also isolated from their loved ones in their last days, even if they lived in the same town, let alone across the world.

Faiz Ahmad Faiz, the famous Urdu poet, wrote that during his years in prison, time collapsed so that “the occurrences of a century seem to be like the happenings of yesterday.” Grief, particularly of the remote kind, seems to work in the same way.

Suddenly, I am 5 again, and Chacha Jee and his wife, Baji, have come over, armed with the Sandwich House they painstakingly made for our birthday parties. There is a garden of lettuce leaves and cottages made of sliced bread. In the middle stands Mr. Potato, on legs of toothpicks, with a bit of carrot for a nose.

Then I am 9, spending sticky summer afternoons at their house, Chacha Jee making the hot chai such a hot day calls for.

Then I am 25 and sharing sly smiles with my brothers because Chacha Jee is singing his favorite song: “Tu Ganga ki mauj main Jamna ka dhara /Ho rahega milan yeh humara tumhara.” (You are the wave of the Ganges, I am a stream of the Jamuna /Our union is bound to happen.)

These are the happenings of yesterday, yet far more real than the ephemera of sun grazing the backyard, my foggy breath, my mother’s voice over WhatsApp, saying that Chacha Jee has passed.

My father was only 30 when my grandmother died, and often relatives would try to reminisce about her with him. Abbu, resolutely private in his mourning, firm in his belief that one takes grief to the prayer mat and leaves it there, would quote the poet Ahmed Faraz. “Dukh fasana nahi ke tujh se kahen /Dil bhi mana nahi ke tujh se kahen.” (Neither was my grief a story, that I may tell you /Nor did my heart agree, that I may tell you.)

In the style of a child forever looking up to her father, I aspire to that, but that is not how I process grief. Instead, even as I am on the phone, I think to myself, I will write into and out of this.

“What skies this earth has inhaled,” wrote Ameer Minai, and Chacha Jee was that — a benevolent sky over everyone who knew him. Born in a rural Punjabi village where men rarely spoke to children and never showed affection to their wives, Chacha Jee carved out a path of his own. I remember him arranging saucers, pouring out cups of chai for Baji and himself. Complimenting the little frocks my cousins and I wore for Eid, when every other man would consider that frivolous.

The sun is now setting upon that world, but without a doubt, that world was there. I saw it — where the worth of a man was his brooding silence, his coldness, his anger. There was that line of fathers, haughty and unforgiving. And there was that childless father of us all, Chacha Jee, laughing his shrill, girlish laughter, joking with everyone, treating even the youngest child with wonder and love and curiosity.

He was a captain in the Pakistan Army. Sent to Germany for training, he tricked an American officer into believing the pungent taramira oil he used to smooth his hair was a Pakistani delicacy to be enjoyed by the spoonful. At 82, he drove himself from Pindi to our home village in Talagang every other week, although my love for him will not allow me to sugarcoat this: Chacha Jee was a truly terrible driver, with a recklessness that was not complimented by capability.

If Chacha Jee was modern enough to have shunned those older, tormented ways of being, he was still hospitable in a way that only someone brought up in the communality of the village could be. He settled in the city but brought the wide-open doors of the dhok with him. When I had a fever and my mother was not around, Abbu deposited me at Chacha Jee and Baji’s house for the night, because there was no one in the family who cared for the sick as they did.

A Palestinian friend tells me that in Arabic they say, “Ili raba ma maat”: The one who raises others never dies.

Now I am a mother, and I find that grieving with a child is odd. The world tumbles on its axis, and yet complete despair seems impractical, because there is a hungry mouth to be fed, a pair of curious eyes watching as you weep. That day we learned that Chacha Jee was gone, my youngest brother, who was visiting, and I kept seeking the baby, not for catharsis (babies are terrible, squirmy huggers) but for comfort. He is new. He has years and years and years, inshallah. He will go places, to spots in time, where none of us will.

“Your absence has gone through me,” W.S. Merwin wrote, “Like thread through a needle. /Everything I do is stitched with its color.” And so it is with being a parent; every feeling, high or low, is refracted through that identity, considered in the context of that tiny body lolling around on the lime green quilt. Chacha Jee, then, is another part of my life that I will not be able to share with my children. I add him to the tablet full of real things — people I touched, places I trod — that will live on only as stories. And yes, stories are important. I know that because why else would I be here with you?

My mother tells me of a time when she visited her grandfather. He was remembering the people he had known in his life, laughing mostly to himself as he relayed this story or that. Ammi sat with him, mostly out of deference, slightly impatient because she didn’t know any of the people he was talking about. Suddenly, she realized that he was telling her all this because everyone who did know the people in his stories was gone.

Children can be brutal to the past. My brother remembers standing in a row for our grandfather’s funeral prayer and having a 4-year-old cousin whisper to him, “I bet it’s going to be Grandma next.” Everyone was together in the village for three days of mourning, during which the little kids ran around, hopping from one house to another. For months they remembered those days with extreme fondness. “We had such fun at Grandpa’s funeral,” they remarked.

But I am obsessed with my parents, and given the way these things go, there is a decent chance that my children will be, too, not for my sake but because that is where any honest attempt at understanding their own selves would lead them. Lives should be led in the present, the eye has to look to the future, but all meaning is past.

So where does that leave us, on this wintry day at the end of a year that has all been winter? In the past, I have been embittered by mourning deceased family members from afar, while everyone back home gets together and seeks catharsis in crowded rooms. This time, we are all far apart.

In 2020, the congregation of grief is online. We call one another and spin stories, which we then rehear from others and wonder: Did this story start with me, or are we all saying the same things? On the family thread, I send a screenshot of Chacha Jee laughing with his mouth wide open, the baby curled up in tummy time in the top right corner. A cousin quotes Khalid Sharif: “Bichra kuch iss ada se ke rut hi badal gayi /Ik shakhs saray shehr ko veeran kar gaya.” (He left, and the season changed /He left, and left the city desolate.)

For my brother, more resolute in his faith than I am, the consolation is clear. As Muslims, we believe that Muhammad will never abandon a lover of Muhammad. And Chacha Jee loved Muhammad, the cousin and daughter and grandsons of Muhammad, the followers of Muhammad, and beyond. Chacha Jee will be at peace. It is us, the living, that I worry about.

I worry for Baji, who will wake up without a partner of more than 50 years; her loss is its own universe. My father and mother, who will miss the kindest shadow in their lives. And us — my brothers and I, the baby. Life will distract us; it is good at doing that. We will have other people to love and be loved by.

All day, my brother and I hummed softly to ourselves, stray lyrics that let us obliquely touch the place that hurt. I started “Tu Ganga ki Mauj” but stopped after a verse. The next morning, I put on the coffee and turned on a song by Mehdi Hassan: “Muhabbat karne walay kam na honge /Teri mehfil mein lekin hum na honge.” (Your congregation will still have other lovers /It’s just that I will be there no more.)

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