‘I just want to be able to support my family and my community [when] people die’
Kayleigh Lagimodiere and her mother Dana Connolly. Lagimodiere is one of 12 Indigenous youth who have been accepted into the Indigenous death doula mentorship program.
A new death doula mentorship program is being offered to Indigenous youth to equip them with skills to help others deal with grief and loss in their communities.
“It’s important for me to learn about this work because prior to colonization, I think we shared a different relationship with death. One that wasn’t so scary and fear-driven,” said Kayleigh Lagimodiere.
Lagimodiere, who is Cree, is 17 and one of 12 young people chosen to take part in the Indigenous Death Doula Program being offered by Blackbird Medicines in partnership with Canadian Roots Exchange.
A death doula is someone who supports people who are experiencing grief and or going through the process of death.
In January, Lagimodiere’s aunt Tracey Stevenson died and she got some experience doing death doula work.
“An elder from Swan Lake [First Nation] came and taught me how to prepare the body,” said Lagimodiere.
“That was like the first time that I had actually seen a dead body. Prior to that, at funerals, I wouldn’t go up.”
Lagimodiere said there have been a few recent losses in the family and they were having a hard time navigating through the grief.
“I just want to be able to support my family and my community [when] people die,” said Lagimodiere.
“I want to be able to help restore our practices that were there and to help people.”
The experience inspired her to apply for the Indigenous Death Doula Program, which was accepting applications from youth aged 12-29.
Lagimodiere said there were a number of different interest options that were available to applicants. She chose palliative care, harm reduction, cultural death practices, legacy planning and culturally grounded death and dying resources.
Indigenous grief
The program was started by Blackbird Medicines and its Indigenous death doula collective, which includes Connor Sarazin, Tasheena Sarazin, Colleen Cardinal and Elaine Kicknosway.
Founder Chrystal Toop, Omàmiwininì (Algonquin) from Pikwakanagan First Nation, started doing death doula work in 2018.
Chrystal Toop is the founder of Blackbird Medicines. The organization is offering an online death doula mentorship program for Indigenous youth ages 12-29.
“I come from the background of a full spectrum or a life spectrum doula worker,” said Toop.
“So I started out working with babies, pregnancy, things like that. But there’s just a huge demand on the other end, on that death spectrum.”
According to the website, Blackbird Medicines offer a range of services including virtual consultations, slideshows and videos for funerals, virtual funerals and aftercare to support people who have lost loved ones.
“For a lot of us, we came to this work because we were doing social services, front line work,” said Toop.
“Some of us have stories around missing and murdered men, women, girls, two spirit. And we have these personal experiences, so we recognize that Indigenous death doula work includes harm reduction from death.”
For the doula program, they are hoping to get more young people involved.
“The program itself is a gentle introduction to people, to support them,” said Toop.
It features two individual one on one sessions, as well as two group sessions with the whole collective, all of which will be done online.
Kicknosway said doing death doula work comes naturally to her. She has helped friends and family who have lost loved ones to cancer, but has also helped families go through things like suicide or other tragedies.
“What does Indigenous grief look like?” said Kicknosway.
“We need to make it a natural place to talk safely and to have spaces for this work.”
If someone you love who lived in an apartment dies, you might assume the landlord will just tear up the lease.
But many grieving families find that is often not the case.
Carrie Davis is mourning the loss of her beloved mother and battling her mom’s apartment complex at the same time.
Despite her mother’s passing, Davis said Northwest Woods in Springfield Township, Ohio, still wants the equivalent of six months rent.
“They said we needed to sign a buyout agreement,” Davis said. “That could leave us paying a total of six months rent in order to get out of that one-year lease.”
She can’t believe the family has to keep paying for an empty apartment.
“The grandkids are not going to get the gifts bequested to them this Christmas in my mom’s will because we have to pay an apartment complex,” she said.
Law is on landlord’s side in most states
Although this might seem unfair, most states have laws to protect the landlord, not the deceased person’s family, when this happens.
Although the survivors are not billed directly, the dying person’s estate is, and sometimes their estate must pay 10 or 11 months rent on an apartment that will not be used.
Family law attorney Pavan Parikh said this is often called the “renter’s death penalty” — a penalty for dying.
“The law is pretty clear on this that when someone passes away, the decedent’s estate is still responsible for the full term of the lease,” he explained.
A handful of states such as Pennsylvania and Colorado have recently outlawed this, but Ohio, Indiana and Kentucky have not.
Parikh said he believes more states should look at changing the law out of compassion for grieving families.
“It is a scenario where the law needs to do a better job of contemplating,” he said.
We contacted the complex owner, Nexus Property Management, but were told “we have no comment” by the woman who answered. She would not put us in touch with the complex’s attorney.
Although Northwest Woods and Nexus Property Management has done nothing wrong in this case and legally have every right to ask for the remaining rent, Carrie Davis would like to see tougher laws to protect the survivors of those who pass away.
“We should protect our residents, our elderly, our disabled, and even our COVID victims, from incurring thousands of dollars in debt just for dying,” she said.
Attorney Parikh, meantime, says taking an apartment complex to court could cost more than the rent.
He suggests negotiating with the landlord, so you don’t waste your money.
When Chrissy Teigen lost her baby Jack last week, some disapproved of the fact that both she and her mother shared images of themselves holding him. Those people may be surprised to learn that some parents go even further when grieving a stillborn baby, choosing to visit and hold them for days or weeks. As October is Pregnancy and Infant Loss Awareness month, we want to help spread the word that this is one of many ways to grieve and memorialize a miscarriage or stillborn child.
“She was a fully grown baby and I kept thinking that she would wake up at any minute,” British mother Jess Mayall told the Sun of her stillborn daughter Ava. Her hospital in the U.K. allowed her to keep Ava in a refrigerated device call a CuddleCot for two weeks. That meant that she and her partner could hold her, take pictures with her, and even take her on walks in a stroller to say goodbye.
“The hospice was a life saver for us,” Mayall said. “The support they offered us really changed our experience and we are so glad that we were able to make two weeks’ worth of memories with her before laying her to rest.”
This is a practice some hospitals and pregnancy-loss organizations have recommended for bereaved parents, even sometimes suggesting they bring the baby home for a short time. While in the U.K., most hospitals have CuddleCots, there are parents and others hoping to bring more of them to the U.S., where often parents don’t even get to see or hold their infants after losing them.
The prospect of holding and caring for a deceased infant is not for everyone, though. We hope to help normalize many ways to cope with this tragedy. Here are some other ways to grieve and memorialize pregnancy and infant loss:
Seek the help of a doula. BirthWaves.org has doulas in five states who provide free help for parents during delivery of a stillborn child as well as with all the difficult things that come after they return home, from lactation support to funeral arrangement.
Hire a photographer who is comfortable with bereavement photos, or take pictures yourself.
Share your feelings with friends and family. No one needs to go through this alone. You may also be surprised to learn that someone close to you suffered from miscarriage or stillbirth without telling anyone until you did.
Covid-19 has created a crisis throughout the world. This crisis has produced a test of leadership. With no good options to combat a novel pathogen, countries were forced to make hard choices about how to respond. Here in the United States, our leaders have failed that test. They have taken a crisis and turned it into a tragedy.
The magnitude of this failure is astonishing. According to the Johns Hopkins Center for Systems Science and Engineering,1 the United States leads the world in Covid-19 cases and in deaths due to the disease, far exceeding the numbers in much larger countries, such as China. The death rate in this country is more than double that of Canada, exceeds that of Japan, a country with a vulnerable and elderly population, by a factor of almost 50, and even dwarfs the rates in lower-middle-income countries, such as Vietnam, by a factor of almost 2000. Covid-19 is an overwhelming challenge, and many factors contribute to its severity. But the one we can control is how we behave. And in the United States we have consistently behaved poorly.
We know that we could have done better. China, faced with the first outbreak, chose strict quarantine and isolation after an initial delay. These measures were severe but effective, essentially eliminating transmission at the point where the outbreak began and reducing the death rate to a reported 3 per million, as compared with more than 500 per million in the United States. Countries that had far more exchange with China, such as Singapore and South Korea, began intensive testing early, along with aggressive contact tracing and appropriate isolation, and have had relatively small outbreaks. And New Zealand has used these same measures, together with its geographic advantages, to come close to eliminating the disease, something that has allowed that country to limit the time of closure and to largely reopen society to a prepandemic level. In general, not only have many democracies done better than the United States, but they have also outperformed us by orders of magnitude.
Why has the United States handled this pandemic so badly? We have failed at almost every step. We had ample warning, but when the disease first arrived, we were incapable of testing effectively and couldn’t provide even the most basic personal protective equipment to health care workers and the general public. And we continue to be way behind the curve in testing. While the absolute numbers of tests have increased substantially, the more useful metric is the number of tests performed per infected person, a rate that puts us far down the international list, below such places as Kazakhstan, Zimbabwe, and Ethiopia, countries that cannot boast the biomedical infrastructure or the manufacturing capacity that we have.2 Moreover, a lack of emphasis on developing capacity has meant that U.S. test results are often long delayed, rendering the results useless for disease control.
Although we tend to focus on technology, most of the interventions that have large effects are not complicated. The United States instituted quarantine and isolation measures late and inconsistently, often without any effort to enforce them, after the disease had spread substantially in many communities. Our rules on social distancing have in many places been lackadaisical at best, with loosening of restrictions long before adequate disease control had been achieved. And in much of the country, people simply don’t wear masks, largely because our leaders have stated outright that masks are political tools rather than effective infection control measures. The government has appropriately invested heavily in vaccine development, but its rhetoric has politicized the development process and led to growing public distrust.
The United States came into this crisis with enormous advantages. Along with tremendous manufacturing capacity, we have a biomedical research system that is the envy of the world. We have enormous expertise in public health, health policy, and basic biology and have consistently been able to turn that expertise into new therapies and preventive measures. And much of that national expertise resides in government institutions. Yet our leaders have largely chosen to ignore and even denigrate experts.
The response of our nation’s leaders has been consistently inadequate. The federal government has largely abandoned disease control to the states. Governors have varied in their responses, not so much by party as by competence. But whatever their competence, governors do not have the tools that Washington controls. Instead of using those tools, the federal government has undermined them. The Centers for Disease Control and Prevention, which was the world’s leading disease response organization, has been eviscerated and has suffered dramatic testing and policy failures. The National Institutes of Health have played a key role in vaccine development but have been excluded from much crucial government decision making. And the Food and Drug Administration has been shamefully politicized,3 appearing to respond to pressure from the administration rather than scientific evidence. Our current leaders have undercut trust in science and in government,4 causing damage that will certainly outlast them. Instead of relying on expertise, the administration has turned to uninformed “opinion leaders” and charlatans who obscure the truth and facilitate the promulgation of outright lies.
Let’s be clear about the cost of not taking even simple measures. An outbreak that has disproportionately affected communities of color has exacerbated the tensions associated with inequality. Many of our children are missing school at critical times in their social and intellectual development. The hard work of health care professionals, who have put their lives on the line, has not been used wisely. Our current leadership takes pride in the economy, but while most of the world has opened up to some extent, the United States still suffers from disease rates that have prevented many businesses from reopening, with a resultant loss of hundreds of billions of dollars and millions of jobs. And more than 200,000 Americans have died. Some deaths from Covid-19 were unavoidable. But, although it is impossible to project the precise number of additional American lives lost because of weak and inappropriate government policies, it is at least in the tens of thousands in a pandemic that has already killed more Americans than any conflict since World War II.
Anyone else who recklessly squandered lives and money in this way would be suffering legal consequences. Our leaders have largely claimed immunity for their actions. But this election gives us the power to render judgment. Reasonable people will certainly disagree about the many political positions taken by candidates. But truth is neither liberal nor conservative. When it comes to the response to the largest public health crisis of our time, our current political leaders have demonstrated that they are dangerously incompetent. We should not abet them and enable the deaths of thousands more Americans by allowing them to keep their jobs.
The coronavirus pandemic has forced millions of us to come face to face with death in ways that we never imagined. Whether we’ve experienced personal losses, attended virtual funerals, or watched death tolls creeping up on the news, we are all confronting the pain of illness, death and grief and we’re having different kinds of conversation than we did before.
Researchers from the A Good Death? project at Cambridge University’s English faculty have teamed up with Menagerie Theatre Company to create three original audio plays, released online for free today (Wednesday) to help us to think and talk about this new reality. Written and recorded during lockdown by Menagerie actors, Seven Arguments with Grief, End of Life Care – A Ghost Story and A Look, A Wave are short 15-minute plays that provide glimpses into the thoughts and feelings of a bereaved mother and a hospital doctor, and reflect on the final farewell of the deathbed goodbye.
Written by Patrick Morris, co-artistic director of Menagerie, and inspired by the research of Dr Laura Davies into the history of writing about death, these plays don’t try to provide answers about how to handle what we’re all experiencing, in different ways, right now. What they do is capture personal stories and aim to be authentic to how hard life, death and loss can be.
Laura told the Cambridge Independent: “We have been running them since 2018 to improve conversations about death and dying using literature and the arts that means we run public events such as workshops for bereavement counsellors, people who work in palliative care, hospice workers and we use literature, museum objects and artworks to help people talk about death and dying.
“During the pandemic we built on an existing connection with Menagerie Theatre at the Cambridge Junction to think about how we could make some audio drama that people could listen to at home or on headphones that hopes, in a non-direct way, to help people to think about death and dying in a different way to the headlines of the death toll creeping up.
“We wanted people to think about what they believe and how they are feeling and what their experiences are. Right now we are all being forced to confront a reality that is universal but in a new way. Our ancestors would have been closer to death with it being more common for people to die in the home – child mortality rates were higher and plague and disease that couldn’t be controlled were more usual. We have been protected in the west from that sense that things are beyond our control and that we are quite vulnerable as human beings. You can’t avoid death and dying at the moment and many people are reporting feeling anxious about it, but of course you can’t hide.
“It’s important there’s a way to think about these ideas and listen to a story that can prompt reflections without increasing fear and anxiety. The work of literature and drama is to stimulate emotions,but with a bit of distance because you know it isn’t real. Our message is that death is part of life and that the way in which individuals experience life, death and loss is complicated and unique, andthat there is not a right or wrong way to grieve or a right or wrong way to live your own life knowing it will end.
“The more you talk about it doesn’t make it more likely to happen, but it can enhance the way you live.
“Even if there are elements of death and dying we can’t control, such as where and when and how we might die, it helps to have shared your wishes with your family and to have thought about what you might wish your legacy to be. They can help you to come to terms with it.”
A Good Death? includes workshops designed for practitioners, such as bereavement counsellors and hospice workers, along with public events, creative collaborations and online resources. The project also uses literature and the arts to open up new conversations about death, dying and bereavement.
Laura added: “One of the things emerging in terms of cultural impact is the experience of complicated grief that comes from a traumatic death. Early research points to the fact we are looking at long-term consequences for people’s mental health because they may have experienced not being able to be with a loved one at the end, or only being able to attend a funeral by Zoom. And missing out on those kinds of rituals makes it harder for people to grieve. Psychologists are looking at this cohort of bereaved people and the impact it will have on them.”
Menagerie is a new writing theatre company, resident at Cambridge Junction. It aims to develop and produce new plays which engage powerfully, imaginatively and critically with the contemporary world. Its co-artistic director Patrick explained: “There are so many books about the grieving process as if it’s some kind of logical process rather than something that’s actually faltering, that stalls, that destroys some people, but makes other people. I wanted to create a space for the real difficulties of grief.”
On the value of this collaboration, Laura added: “Working with Menagerie has given me a new perspective on my research into 18th century literature. These plays turn abstract and complex ideas into personal stories, showing new angles that I’ve not noticed before. And they capture brilliantly both how similar our struggles today are to those of the past, and how every person’s response to death or loss is unique.”
The plays can be listened to on the A Good Death? project website, good-death.english.cam.ac.uk/collab , where you can also watch interviews with the researchers, writer and actors.
Hospices nationwide have leveraged technological advances to improve workflows, referral communications and enhance patient care. While telehealth in particular has been vital for hospices to continue reaching vulnerable high-risk patient populations during the COVID-19 pandemic, providers must proceed with caution when it comes to technology and patient care.
Prior to the pandemic, technology in the hospice industry was evolving, with systems such as predictive analytics, telemedicine, artificial intelligence and virtual reality gradually changing the end-of-life care landscape.
“We have obviously seen an increase in the use of telehealth, and the word of caution there is we want to make sure we learn from this pandemic and accelerate some of that move,” said Edo Banach, president and CEO of National Hospice and Palliative Care Organization (NHPCO) in a recent Netsmart webinar. “We have to make sure that we use technology appropriately, but not to replace the human touch that is the sweet spot of hospice and palliative care organizations.”
NHPCO has been among the advocates in the hospice and palliative spaces calling for regulatory reform as telehealth pushes forward during the coronavirus pandemic. In August the U.S. Centers for Medicare & Medicaid Services (CMS) announced that it would make permanent a number of the temporary flexibilities to expand telehealth that the agency implemented in response to the pandemic, though of rules extended that will affect hospices remains uncertain. Concerns have flooded both the hospice and palliative care fields as providers strain to navigate uncertain technological reimbursement opportunities ahead.
“Importantly, we have to make sure that hospices and palliative care programs are compensated for the technology,” Banach said. “They are nowhere near as compensated as hospitals and other institutions when it comes to technology. That’s something that needs to improve. It’s really going to be important for individuals to have access to the technology that they need to get care in the home and for the clinicians to similarly have that same access and support. This is going to include technology for the delivery of meals and for the delivery of pharmaceuticals, technology that enables vital signs to be taken, technology that allows individuals to stay connected. The investment there is really massive. Billions of dollars of investment have gone into interoperability and state changes.”
Investing deeper in technology comes with considerations of data analysis and relationship-building capabilities as hospices look ahead to a value-based payment environment. Enhancing data analysis will be key for hospices looking to demonstrate their value proposition to Medicare Advantage plans in anticipation of the hospice carve-in coming in 2021. Designed to improve continuity of care and increase coordination among providers, the ability to reach patients sooner through interdisciplinary partnerships is another potential benefit from expanded technology use.
“The most important thing is diversification. If there is an opportunity to provide person-centered interdisciplinary care under contract with different kinds of entities, that’s going to be really important for hospices to establish those relationships to acquire the technology that’s necessary to take risk and really to begin, or to continue to live, in this sort of new value-based world because at some point, it’s going to be all that’s left — for better or worse. It’s really important that if you’re not in that space, to get in that space and to diversify as much as possible. Those who do that will be quite successful,” Banach said.
When the documentary filmmaker Kirsten Johnson learned her dad had dementia, she decided to kill him herself. Over and over again.
The result is the new film “Dick Johnson Is Dead,” which is available on Netflix starting Friday. In it, Johnson combines staged enactments of her father dying in accidental ways (tumbling down the stairs or getting hit by a falling air conditioner) with scenes from their life navigating his memory loss, cognitive decline, and impending death.
The film is both incredibly moving and funny, an exploration of the coming grief and an act of preserving what it is that Johnson is so sad to be losing. The “deaths” are played for laughs — moments from which Dick Johnson is resurrected in defiance of the finality of death, but against the backdrop of a very real, irreversible progression toward that ultimate fate.
The film debuted earlier this year (before the pandemic fully arrived in the United States) at the Sundance Film Festival, where it received a special award for innovation in nonfiction storytelling.
Johnson this week spoke to STAT from New York about making the film. Below are excerpts from the conversation, lightly edited for clarity.
Before your dad developed dementia, your mom died from Alzheimer’s. Did your experience with your mom inform you making this film, or even make it possible for you to make it?
Completely, and in many ways. I was really just devastated by her Alzheimer’s. I kept not seeing it coming, the way in which Alzheimer’s gets worse and worse. I would think this is as bad as it can get, and it’d be like, oh no, it became worse. So I really went through that as a period of grieving, and then more grieving, and then more grieving.
My previous film, “Cameraperson,” is an inquiry into memory and going back into all this footage that I shot over 25 years of being a cameraperson. I became very interested in memory and how memory functions because of her Alzheimer’s, and then I became very interested in time and how time functions. And then I was relating that to cinema.
When you’re looking at a movie, you’re not looking at a memory. You’re experiencing something, and you’re often looking at a dead person, like you’re watching Buster Keaton. But Buster Keaton was dead before I ever watched one of his movies and yet his movies are totally alive. So what is that? And that’s how I set upon the idea of making this movie with my dad, as a way of being defiant toward dementia, being defiant toward death. Like I’m going to laugh this time, I’m not going to just do the veil of tears that I did last time.
You say in the film that at first, because of what your mom went through, that when you first started hearing about your dad’s memory and cognitive issues, you thought, “this isn’t happening again, no way,” which I think is what a lot of people feel initially. How did you go from that point of denial to accepting this to the point you could make a humorous film about it?
Sometimes compartmentalization serves people. It helps us function. Sometimes, though, denial and avoidance and silence just let festering things fester more.
I’m really interested in how humans cope with exposure at scale to very difficult things. My father was a psychiatrist. He spent 50 years treating people with a variety of mental illnesses, and he’s someone always looking for a joke. And I think that was one of the ways in which he coped with how much trauma he encountered. So I was trying to learn from his methodology, learn from my career, of how does this craft — whatever craft it is that we have, whether it’s our medical skills or our filmmaking skills — how do we work with our craft to transform pain and difficulty into curiosity, hope, laughter? Because I needed that.
At one point in the film, as part one of preparing for one these fantasy death sequences, your dad is in a casket, and you say seeing him breathing in there makes it less hard. The enactments of his death are generally slapstick and funny, but still, was taking on your dad’s death as your job difficult, even if it was in defiance?
It definitely had plenty of difficult moments, and yet because my dad has dementia, I was not going to avoid the difficult moments. They’re already in the house, so like, OK, how do we engage with them? Seeing people who work in these stressed positions, who are caregivers of many forms, the people who are doing it with lightness, who are doing it with humor and acceptance of the absurdity or the obscenity of it, that often helps.
The other thing I’m really interested in is images, and how images imprint on our brains — the idea of the indelible image. As I worked over the years, I realized that what is often the unforgettable image is the impossible image. So if you think about the things that have like, “Whoa, I saw this and I can never unsee it,” it’s often seeing something like a body in a position it’s not supposed to be in, or a body in a position that is unfamiliar to you. And accidents and death and disease, they all do strange things to the body. It’s this idea of being haunted by an image. We really file certain things away as, “OK, this is exceptional.” So I deliberately wanted to play with that, and see what would happen if I created an image of my father, like the indelible image of my father lying at the bottom of the stairs, but then he can get back up and we can laugh about it.
In another moment in the film, you ask a woman whose husband had been a pathologist if that changed her relationship with death, just being in the vicinity of it. And so for you, how did making a film about the end of life and death change your relationship with death?
I’m increasingly interested in things I wasn’t interested in before. And I certainly think there’s a great probability that I will have dementia. And there’s a part of me that’s like, “Huh, I kind of can’t wait to see what it’s going to feel like.” I know so much about it from super close proximity, but I don’t know it from the inside. But I’m also like, “Please let me die another way.”
But the film is healing. It has given me a way to do this differently than I did with my mom.
The film was made before the pandemic, but with that, there’s just been so much death in the past nine months, and I wonder if making the film has shaped your thinking about the pandemic and how many people have died.
Like each of us in our own ways, I’m really struggling with how to wrap my brain around this. You know, a million deaths? I talk about the scale of things that people encounter during a lifetime when they’re a professional who really looks at death. Like, I did 225 Holocaust interviews, but I didn’t do 6 million Holocaust interviews, right? And there is a way in which the individual brain may not have the capacity to allow in global-scale pain, and yet that is what is being asked of us. It’s also being asked of us in terms of climate change.
I’m definitely overwhelmed. I’m also deeply interested in the fact that we are now sharing anticipatory grief. I feel like dementia introduced me to that concept. You know worse is coming so what do you do with that? And you know finality may be coming. What do you do with that? This concept of, we’re in the long middle of the pandemic right now, we don’t know when it ends — that’s a very uncomfortable place for humans.
You tell someone in the movie that we all carry parts of our parents in us. And then you ask what he carries of his parents. So I’ll just end by asking, what do you carry of your parents?
From my mother, I know that she keeps showing up. She keeps being here. She doesn’t go away, and I’m comforted by her presence. She had a great love of color and I’m sitting here looking at what I’m surrounded by, and there’s an explosion of color all around me. And I think, that’s my mom.
From my father, I have this wish to listen more and I have this desire to laugh more.
