USA AND CANADIAN expats face a small mountain of paperwork should someone close to them die in Mexico. An even higher mountain of forms, certified translations, lists of possessions, is forced on loved ones left behind, should the deceased not have any type of ” Last Will and Testament.”
In 2019, 50,000 Canadians were living in Mexico. 182 died. 75% were from natural causes which likely does not include “seasoned” expats sidestepping sidewalk “cenotes”, tripping over abandonned building materials or struck by vehicular traffic while navigating uneven walkways and driveway indentations.
It would seem pedestrians are trampling on private sidewalks originally built by the abutting landholders, but never maintained by them. Uneven heights, slopes, broken curbs and the like can reak havoc on retirees who fly here and walk everywhere thereafter.
Two and a half million Canadians visited Mexico as tourists last year. A significant percentage are in the autumn years of their lives. They may be in Yucatan for six weeks or six months, to escape the colder climate “up north”! Snowbirds(as Canadians and residents from the northern U.S. are called) have an inherent duty to their families “back home”! All expats and tourists alike would be well advised to make it easier to cope, upon the death of a loved one. Important and critical personal information about the deceased must be available to the Mexican authorities from day one. Regardless of your country of origin, the burden is essentially the same.
The whole procedure following the death of an expat residing or visiting Mexico can be daunting for next of kin. The deceased’s identity must be thoroughly established in accordance with Mexican laws.
If the name on the birth certificate is even slightly different from their passport, the transition from one name to another MUST be explained and vertified accordingly. It is particularly cumbersome, should the deceased be a woman. Her birth name could be different through one or more marriages. In each step,the documentation will require translation to “Español” by a registered and authorized translator. The same rules apply to ALL documentation required. “The Last Will”, the identification of all possessions with current valuation held in Mexico by the deceased and the name(s) of next of kin who should be notified, must all be translated in to Spanish .
Expats are urged to maintain a special file back home, or here in Yucatan or Mexico. A designated family member or friend should be aware of this file and where it is stored. The”paperwork” could already be translated and certified. The “executor” of the expat’s estate should be identified with all neccessary contact information tucked away with the deceased passport .
Representatives from the Canadian Consulate in Cancun and similarly designated personnel from the USA Consulate in Merida, appeared before an overflow crowd of over 150 expats at Flamingos Restaurant on the Malecon in Progreso, last Tuesday January 14th,2020.
A funeral home in the Yucatan, is a primary step, to walk you through the process. Cremated remains can be exported within a day or two. A casket requires one or more weeks . The Funeral Director can not forward any valuables such as rings and other jewellry, computers etc..These must be claimed by the contact identified in the Will, or otherwise verifiable family.
Expats living in Yucatan as “Temporary or Permanent” residents should have the LONGFORM marriage certificate which is normally not issued but available in the State or Province where the marriage was performed. This document and your birth certificate should be carried with you as you travel.
Most travellers are optimistic and excited about spending their vacations and retirement without giving much thought to the consequences if they die abroad. Sure,they may have medical and life insurance but forget all the details and information required to repatriate their remains.
To use the now famous phrase quoting reknowned Woody Allen,when asked what would happen to his fortune when he dies, he replied: “If I can’t take it with me, I’m not going” !
British singer-songwriter James Blunt is best known for his sentimental heartbreak ballads “You’re Beautiful” and “Goodbye My Lover,” but his latest single “Monsters,” a tribute to his ailing father, is his rawest and most poignant yet.
In his devastating new “Monsters” music video, an anguished Blunt, in an extreme close-up reminiscent of Sinead O’Connor’s iconic, one-take “Nothing Compares 2 U” clip, stares down the lens, his eyes welling up with tears, as he sings: “I’m not your son, you’re not my father/We’re just two grown men saying goodbye… So Daddy, won’t you just close your eyes?/Don’t be afraid, it’s my turn/To chase the monsters away.”
Blunt struggles to maintain his composure throughout the first half of video, so much much so that it’s almost uncomfortable to witness. And when the camera finally cuts to a wider shot, it becomes clear why he is so distraught, that he isn’t acting, and that his tears are very real. Sitting stoically beside him is his real-life dad, former cavalry officer Colonel Charles Blount, who is battling stage 4 chronic kidney disease.
Last year on Good Morning Britain, Blunt spoke of his father’s serious illness and made a plea to possible organ donors, saying: “I’ve come on here to ask you what blood group you are. Some things have been going on in my life that I needed to write about. My father has not been very well, actually. He needs a new kidney and a kidney donor. And I’ve come on here to ask you what blood group you are. If you are an O-positive, I’ll take it off you.” (Blunt revealed that, sadly, he is not a match.)
On the same U.K. morning program, Blunt spoke of the experience of writing “Monsters” after learning of his father’s kidney disease, explaining: “Really that has been an amazing moment, because when you realize your father’s mortality, it’s a great opportunity to say the things I’d like to say to him.”
Fans, particularly those who have lost a parent or who are preparing to say goodbye to a sick parent, have taken to social media to praise the touching video, which went viral after William Shatner tweeted it to his 2.5 million followers.
This phrase, generally used during burial ceremonies, suggests that every life will one day come to an end. Today, the flurry of startups businesses seeking to change timeless traditions is challenging even this. Now, one can obtain eternal life by becoming compost witnessing rebirth as a tree.
Traditional funerals, in the form of cremation, embalming and burial, are now giving way to new alternatives with the emergence of new funeral startups that aim to disrupt the overpriced services sector by offering something cheaper and better.
The market they are targeting is sizable. With nearly 2.6 million deaths every year in the United States, a new class of entrepreneur sees plenty of opportunity to innovate.
Considering the fact that 41.4 million Americans live below the poverty line and that 40 percent of US citizens cannot afford an unexpected expense of just $400, it is clear that a majority of Americans would be unable to absorb the average cost of a funeral, which sits at around $8000.
Due to the nature of the business (that everyone is bound to use the service at some point) it was long believed that nothing could jeopardize the funeral industry. Yet, due to the high cost and availability of cheaper alternatives, it seems that all sectors of the industry have been reporting losses over the past decade.
Currently, the coffins and caskets market is worth some $550 million, but that belies an annual decline rate of 3.6% over the last five years. That rate is expected to accelerate to about 4.1% in the next five years. Skilled embalmers have been particularly hard hit, with employment in that profession declining 28% in less than 10 years.
Back in 2015, cremation surpassed traditional burial rates across the country for the first time, largely because of consumer attempts to reduce costs associated with funerals.
However, for environmentally conscious Millennials, even cremation is out of the question because the process emits some 270,000 tons of carbon dioxide each year. That is equivalent to the CO2 from 22,000 homes, or the emissions of 50,000 cars.
Millennials, as tech-savvy and environmentally conscious consumers, are driving the popularization of “green burials”, which are both affordable and involve fewer synthetic chemicals.
Green burials cost an average of $2,000, which includes a plot and environmentally friendly casket. For those who desire even more eco- and wallet-friendly solutions, there is an option to ditch the tombstone and chose a GPS marker instead.
Composting is also on the rise as a unique way for one to give back to the planet more directly. The process involves sealing a body into a container with wood chips, alfalfa and hay and adding heat to stimulate microbial munching.
There are still a few legal issues to be resolved around the compost funeral, but the world’s first funeral home dedicated to composting human beings is set to open in 2021 in the state of Washington, the first state to legalize such services last year.
An even newer trend is the “tree burial” during which ashes are placed in the soil with a seed to plant a tree that won’t affect the tree’s natural DNA.
There are also green burial options that aren’t wallet-friendly, and far surpass the traditional funeral costs. One such option is the space burial in which ashes are launched into space via a rocket.
And how about Cryonics? At a cost of a minimum of tens of thousands of dollars, a handful of companies are willing to preserve a body in the hope that one day the technology will exist to bring the deceased back to life.
The funeral industry though it was immortal. It’s not. Today’s consumers, even beyond the grave, want options and startups are more than willing to give them those options.
There’s a movement afoot, and as the new Broadway Beetlejuice show suggests; it’s all about death. From Death Cafes and Death Over Dinner, to the surge in new Netflix shows like Dead To Me and After Life, new life is pouring into old conversations about death. After decades kept firmly backstage, people are talking about death and grief, and bringing difficult conversations into the limelight.
Until now, the typical North American death-phobic response we have upon hearing of someone’s loss is reduced to a quick, “I’m sorry for your loss,” on Facebook. We may send flowers, or a card, but these often feel like empty gestures that do little to really support anyone. Most people who have just lost someone they love are in very real need of help, and fast. Traditional supports seem antiquated, expensive, and worse – impersonal.
Fortunately, help is here. In Baltimore, Chicago, New York, and Seattle, a group of female founders are on a mission to revolutionize death care and make sure no one grieves alone. Motivated by their own experiences with death, these women have created easy-to-use, thoughtful tools to help people navigate loss. Of course, death sucks, any way you look at it. No online tool can bring our loved ones back. But these women are working hard to normalize conversations about death, and make it easier – much easier – for people to help each other through grief.
First, meet Brooklyn-based Liz Eddy and Alyssa Ruderman, who co-founded Lantern to provide people with step-by-step guidance on how to navigate their lives before and after a death. When Liz’s Grandma died, she turned to Google in search of answers to her myriad questions about everything from funeral planning to closing accounts. What she found was a morass of unwieldy content, and none of the hand-holding she was looking for. So, Liz and Alyssa created Lantern, as a single source of guidance and information for end of life and death planning. It’s free to use their custom checklists and get help making your loved one’s funeral or celebration of life, everything you want it to be. I love that Lantern makes people feel empowered at a time in their lives when control is hard to come by.
Once you’ve survived the funeral, the daunting realities of grief come tumbling down. Litsa Williams and Eleanor Haley co-founded What’s Your Grief after they each lost a parent. Based in Baltimore, Litsa and Eleanor have built an incredible suite of practical and specific content and resources to help grieving people find a path forward. With their focus on education, exploration and expression, What’s Your Grief offers articles as well as affordable online courses on topics ranging from how to sort through a loved one’s belongings or develop strategies for surviving the holidays while grieving.
If you’re looking for ongoing grief support, Seattle-based Grief Coach sends personalized text messages all year long, based on your loss. And if you have friends and family who want to help, but aren’t sure how, they’ll receive tips and reminders too. Everyone’s messages will be customized based on things like cause of death, age, and your relationship to the person who has died.
I was inspired to create Grief Coach after the death of my husband and (a decade later) his best friend. After delivering the eulogy at my friend’s funeral, I was overwhelmed by the countless friends and family members who wanted to apologize for not having been there for me when my husband died. They were afraid, they said, and just didn’t know what to do. I created Grief Coach to answer the question of “I want to help, but don’t know how,” so that no-one would have to grieve alone.
Also in Seattle is Laura Malcolm, who founded Give InKind after losing her daughter. Laura had people around her who she knew wanted to help, but instead found herself in a room literally overflowing with flowers with no idea what to ask for, but a long list of things she wasn’t able to cope with on her own.
Give InKind brings together care calendars, fundraising, and wishlists. If you’re looking for a way to coordinate support, raise money for funeral expenses, and make it easy for friends and family to support you after a loss, GiveInKind is a great place to start. It’s free to create a page, and from there you can invite others to join and contribute.
And finally meet Ali Briggs and Rachele Louis in Chicago, who founded LifeWeb 360 after a friend’s brother died unexpectedly. As the years passed, Ali’s friend saw people’s memories of his brother fading away. He was worried that he couldn’t remember the sound of his brother’s voice anymore. LifeWeb 360 is a multimedia scrapbook that makes it easy for people to join together to collect and share memories that are then stored and shared online.
These eight women have created five valuable tools that recognize the power friends & family have to make a difference, after a loss.
LA mortician, Caitlyn Doughty, captures the no-nonsense spirit of these founders best, reminding us that; yes, there’s a movement afoot – but we don’t want to be a movement. Death is part of life, and what we really want is to normalize difficult conversations and bring death & dying into our day-to-day lives.
With founders like these women taking the reins, I have no doubt that we’re moving quickly towards a world where everyone has the help they need, after a death.
What a neurologist learned when his brother-in-law fell into a coma
In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”
A family member’s aneurysm leads to difficult decisions
Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.
“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.
This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”
In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.
Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.
Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.
Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.
Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.
The importance of empathy and connection
“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”
To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”
Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”
In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”
‘We really need to talk more about death … it is an inevitable part of life, and yet we shroud it in euphemism, hushed secrecy, and denial. We often grieve alone with little sense of shared understanding as we sanitise our emotions and somehow carry on.’
That is how South Australian GP Dr Alison Edwards began a talk she gave to her local palliative care team. And it is why she set up a website, Doc Grief, dedicated to supporting doctors who have lost loved ones.
That is what she wished existed when she lost her ‘soulmate’ Mick to a sudden cardiac arrest 15 years ago.
Dr Edwards’ own path of grief has shown her that doctors often grieve differently – and that the professional distance necessary to deal with death at work simply does not cope with personal grief.
‘I felt the need to know others had walked a similar path and survived, and to maybe find some tips about how best to achieve this,’ she told newsGP.
‘I wanted to read a story that was a close match to mine, but found very little in print about doctors grieving. So some years later I felt drawn to create such a site for others.’
Writing on her site, Dr Edwards tells the story of her loss:
Mick was the local footy legend, the cheeky butcher with a sparkle in his eyes. After 38 years of thinking life for me was destined not to be one of a long-term couple, it was really nice to have someone to love and be loved by and even see myself growing old with.
Mick had spent the afternoon out with the kids and had had a couple of beers down the pub while I was in at work. He was in one of his favourite positions – lying on the lounge channel-surfing. And then Mick had a cardiac arrest and died. No warning. No clues. Just chatting with me one minute about the perfume the kids had given me for Christmas and next minute making funny breathing noises as if he didn’t like the perfume.
Mick died, and the world as I knew it crashed down around me.
Mick was just 37.
In the immediate aftermath, Dr Edwards’ small community – Port Broughton on SA’s Yorke Peninsula – reached out. That, she found, was supportive and challenging.
‘It meant having to share my grief with the town. There was no opportunity to return to work and not have everyone wanting to express condolences,’ she said. ‘I couldn’t turn around without finding more scones, lasagnes and soup.
‘People want to do something physical, which is beautiful, but you also can’t be anonymous. In an urban practice, you could sneak back and your patients would necessarily know. Here, everyone knew.’
Dr Edwards took several months off following Mick’s death. When she returned to work, she printed little cards for her patients to read ahead of consultations.
The cards stated that Dr Edwards was doing okay and asked patients to treat it as a normal professional consultation.
‘No one could stick to it. I gave up,’ she explained. ‘Patients felt rude not to express their condolences.
‘The first time you see everyone, they feel the need to go through it. It made things a little bit harder.’
Since she set up the site, many GPs have told Dr Edwards that it has been helpful. Some have written to her seeking support. Others have contributed their own stories of grieving.
‘Reaching out to those with lived experience can be very supportive,’ she said.
‘I’ve had people write saying thank you so much for setting this up. Just knowing that someone else had lived the experience while having a broader understanding of the health system [is helpful].
‘Doctors do get the idea that random stuff happens. In the community, there’s often the expectation that we can fix everything, but doctors understand that things are unpredictable.
‘People do randomly have cardiac arrests and die.’
Dr Edwards believes doctors grieve differently, due to their familiarity with death and learned ability to maintain professional distance.
‘Knowing death so intimately may falsely lead us to think we are acquainted with grief, but when it comes to losing a loved one all bets are off,’ she wrote in a KevinMD article.
Dr Edwards believes that the stereotypical doctor personality traits – high achievers able to hide their emotions and focused on control – can pose particular challenges, as grief and loss are entirely uncontrollable.
‘Doctors spend most of their time observing … [but] unless we have loved in a dispassionate, dissociated way, we do not give our grief a fair chance if we do not live it,’ she wrote.
Dr Edwards’ grief was ‘very raw’ for the first few years. Over time, it gradually changed.
‘I went from feeling it with every breath and as if it was sitting right in front of me, to a place of living with it rather than living for it,’ she told newsGP.
But she still misses the shared life that could have been, writing:
I still love him and what he gave me. And I miss the future we didn’t get to share … I think I have a more profound sense of living life to my fullest capacity and valuing what I do have.
I have coped by taking one day at a time, allowing time to soften the impact and create new memories.’
There are no shortcuts and no way of bypassing the process of healing after a broken heart.
There are no right ways of grieving. Whatever you find works for you is probably the best for you. This is unlikely to be booze, drugs or running away but you may need to try this for yourself for a while before you believe it. There is no standard timeline. You do not get over it, you do not move on as if it could be left behind. But you do learn to live with it rather than be consumed by it.
Increasingly, Dr Edwards finds people grieving in her long-time community are seeking her out.
‘It has changed how I practise,’ she said.’ ‘You’re taught not to bring too much of yourself into the consultation, to keep your distance, be professional, as it’s not about you.
‘In a little community, it’s almost impossible to do that. Patients want that sense of connection – especially when they already know your story and you can’t duck away from it.’
Dr Edwards will share parts of her grief with patients to help normalise their own experiences.
‘You almost need to do this in smaller communities, but it might not be appropriate in an urban setting,’ she said. ‘There is power in a shared understanding.
‘Often people want to talk because they know I have that lived experience. Not to acknowledge that would be counterproductive.
‘We’re humans, we like to know we’re not alone. We can be reassuring, to let patients they’re not going mad – that this is a normal response.
‘It can be powerful to hear that from someone who lived it.’
“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”
Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.
Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.
According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.
The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.
“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”
Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
Usually, hospice care is offered in the home, or sometimes in a nursing home.
Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.
For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.
“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”
Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.
“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
That’s exactly what happened with Teno’s mother.
“While it was difficult for me to witness, I knew what to do,” she says.
In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.
Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.
Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.
Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”
For many families, making hospice work at home means hiring extra help.
‘I guess I’ve just accepted what’s available’
At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.
“If you don’t, she will just spit them out,” Velez says.
Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.
When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.
“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.
But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.
Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.
Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”
Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.
That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.
The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?
“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.
Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.
“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”
Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.
I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.
This experience of family caregivers is typical, but often unexpected.
“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”
A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.
Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.
Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.
“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”
She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.
“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”
Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.
As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.
“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.
“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”