Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.
My 92-year-old father fell one Saturday night a few months ago. My mother could not pick him up. Her brother was not answering his cellphone, so she called 911. An ambulance crew brought him to the hospital.
The emergency-room physician ordered a CT scan. A spot on the scan worried him, so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of his brain. Meanwhile, a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital.
I took the first flight from Washington, D.C., and arrived in his room at a suburban-Chicago hospital at about 9 a.m. He was sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.’s. Still, my father was acting like himself. When I entered the room, he mischievously needled me: “How are you doing, schmucko?”
The monitor above his bed showed a regular heart rate and oxygen saturation of 100 percent. The IV pole towering over him showed two empty bags of antibiotics.
I squeezed my dad’s hand, and we talked for about 20 minutes. Then I stepped out of the room to find the doctor to ask some questions. Standing at the nurses’ station, I was introduced to a neurosurgeon and a neuro-oncologist, who were ready to talk to me about my father’s condition and treatment options.
My father had a large brain tumor that could not be cured and would end his life. No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life. We didn’t want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left.
But no one had taken the time to ask him about his wishes regarding medical treatment, even though he was competent to make decisions and was himself a physician. No one asked my mother and brother, who were with him in the emergency room and at the hospital, if he had an advance-care directive or wanted to have a do-not-resuscitate order. My father, a pediatrician, was one of those doctors who hated getting any medical care. Fifteen years before, he had walked around for three weeks insisting that the pain at the bottom of his rib cage was just acid indigestion. Eventually, he consented to go to his internist and was diagnosed with a heart attack, which required a bypass operation. Everything about the way he’d lived meant he certainly did not want any brain surgery with no chance of a cure. He wanted to die at home having shared his final days with his family.
Since the mid-1980s, I have worked to make this type of end-of-life care possible. I am a physician too. Once my father was admitted to a hospital, it took all my expertise and experience to arrange the kind of care he needed—and prevent the medical system from taking over and prescribing unnecessary interventions.
It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.
It was easy for my mother to call 911 and have him transported to the hospital. But if he fell again, there would be no 911-like number for my mother to call for urgent assistance short of EMTs and ambulances.
It would be easy for the emergency-room physician to admit my father again, and even put him in the intensive-care unit. But no one suggested that he and my mother get mental health care or see a grief counselor to cope with his new terminal diagnosis.
The hospital was no place for my father to spend his last days. To thwart the medical system’s momentum to lard on ever more costly, unnecessary, and unwanted interventions—and to convince the medical staff we were serious about no—I took my father’s oxygen monitor off his finger, disconnected his cardiac monitor, insisted that the nurse remove his IV, and asked the physician to discharge him as soon as possible.
Beyond a suggestion that we find a home-care agency to call, the hospital offered no assistance in getting him help at home. Ironically, the aide transporting him out of the hospital volunteered that she knew someone who was available to provide home care. Through my father’s former nurse and someone she knew, we ended up getting a talented and kind set of cousins—immigrants from the Philippines—who were able to provide care.
Despite the medical system, my father did avoid further trips to the hospital, an ICU admission, and more antibiotics and machines. He spent the rest of his time at home and was able to say goodbye to everyone. And being at home was cheaper. We still don’t have all the bills, but the tab just for about 12 hours in the hospital came to $19,276.83. In contrast, the more than 200 hours of home care he got over the next 10 days cost only $6,093.
Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them. My father’s story is the answer.
It has less to do with physicians’ and hospitals’ financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care. For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family. Until the system takes account of the whole patient and provides the whole package of humane care as the default—so that it’s routine and made available 24/7 with one physician’s order, just as chemotherapy or an MRI would be—Americans will not be able to finally change end-of-life care and reduce those costs.
A terminal diagnosis is inherently traumatic for patients and their families. My father’s experience at home before his death needs to become the standard of care. And not just for patients with pushy sons who have medical training and know how to speak with physicians, disconnect cardiac monitors, and firmly refuse the interventions that our health-care system is so predisposed to offer.
Complete Article ↪HERE↩!
‘It’s not what you think’
Joe is 34 and is facing his own death. He was given a terminal cancer diagnosis and has already lived longer than doctors predicted. He tells Leah how dying was nothing like he had anticipated, and he and his friends discuss the impact this unexpected turn has had on how they view life
She arranges everything, from finding long lost families to organising organ donation
She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.
She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.
Watching her own grandmother have “a beautiful death” inspired her to help others do the same.
“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.
As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.
“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.
In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.
“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.
“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.
“People my age group see the world differently and approach things in a different way.
“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?
“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”
A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.
Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.
Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.
“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.
“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.
“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.
Whatever background people come from death and dying are still taboo subjects which Claire must help them face.
“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.
“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.
“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”
There is “no formula or prescription” for talking about death so Claire begins with a few questions.
“It’s about asking questions to get people to explore death or go away and think about it.
“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”
When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.
“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.
“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.
“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.
“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”
But she doesn’t push it if people don’t want to talk.
“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”
As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.
“I know what a dead body looks like, where you go after death and what the crematorium looks like.
“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.
“Most of the time people are worried about “what’s happening next and what about the pain?”
“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.
“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”
These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.
“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”
“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”
“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”
It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.
“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”
Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.
“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.
“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”
Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.
“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”
Complete Article ↪HERE↩!
By BETH SLEPIAN
A recent analysis published by the New England Journal of Medicine revealed that for the first time since the early 20th century, more Americans are dying at home than in the hospital.
According to the report, in 2017, 30.7% of Americans died at home, while slightly fewer (29.8%) died in hospitals. Another notable statistic from the study is that between 2003 and 2017 the number of Americans who died in hospice-specific facilities grew by 41%, from 0.2% of deaths in 2003 to 8.3% in 2017. According to the National Hospice and Palliative Care Organization (NHPCO), 47.5% of New Hampshire residents on Medicare who died in 2017 were receiving hospice care benefits.
This data does not come as a surprise to those of us who work in hospice care and have the honor of helping families navigate the end-of-life experience.
Up until the mid-1900s, it was routine for people to die in their homes, cared for and surrounded by loved ones, but by the 1950s, more Americans died in hospitals. The concept of “death with dignity” was introduced in the United States in the early 1960s, sparking the movement toward hospice care.
The hospice movement gathered steam in the late 1970s with the formation of the National Hospice Organization, and by the mid-1980s, the federal government formalized the hospice benefit for people on Medicare.
Concord Regional VNA has been caring for people in their homes for 120 years, providing nursing, therapy, personal care, homemaking and other services to people of all ages. For more than 30 of those years, we have provided specialized end-of-life care, guidance, and support to patients and families. In 1994 we expanded our hospice service by opening the first Hospice House in New Hampshire on Pleasant Street in Concord. We have served thousands of hospice patients and their families over the years, including nearly 1,000 patients in 2019.
While it is true that hospice care comes into play toward the end of a person’s life, there are many common misconceptions, such as:
■ Hospice care is only for the last few days or weeks of a person’s life;
■ It is only for people with cancer, people in severe pain or those who have a “do not resuscitate” order;
■ People on hospice do not receive treatment, they’re just kept comfortable with medication;
■ Hospice is a “place” where a person goes to die;
■ Hospice hastens death;
■ People on hospice must give up seeing their primary care providers;
■ Hospice care is focused on the patient and ends when the patient dies.
Hospice care is much more than meeting patients’ medical needs. Hospice care empowers patients to have a voice in their end-of-life experience, and to help them through it with as much comfort, grace and dignity as possible. It is about compassion – for them and their loved ones.
Some people choose to begin receiving hospice care in the final weeks or days of a terminal illness, but it is not unusual for patients to begin hospice care many months before they eventually pass.
People who receive hospice care through Concord Regional VNA benefit from individualized care coordinated with their care team, which may include their primary care provider and other clinicians. They may receive nursing care, physical and/or occupational therapy, pain management, spiritual care, social work , including emotional support and companionship – all in the place they call home, which could be a private residence, an independent living or assisted-living community, or a skilled nursing facility. Those who need more intensive care may opt to receive care at Hospice House.
Equally as important in this journey are the caregivers, who are most often the patients’ loved ones. Hospice care is about them, too. In addition to day-to-day assistance with patient care, loved ones may receive emotional and spiritual guidance and support from our counselors and spiritual care providers; help with end-of-life planning; much-needed respite care; and myriad other services. And it is important to note that hospice care does not end when a patient dies – our bereavement counselors and support groups help loved ones as they learn to cope with their loss for as long as they need us.
Hospice care is also about volunteers. The hospice movement was started by volunteers and they remain a crucial component to this day. In fact, Medicare requires that volunteers provide at least 5% of total patient care hours, which can take the form of direct support, spending time with patients and families, or performing tasks that support hospice care services. Concord Regional VNA is incredibly fortunate to have nearly 100 volunteers from the communities we serve who give their time and energy to our hospice patients and their loved ones.
So what does this mean and why does it matter? The recently released data suggests that more people have come to understand that receiving care in the comfort of home – in familiar surroundings, in proximity to loved ones and friends – is a preferable and realistic option. From a clinical standpoint, studies show that patients who receive hospice care live longer than those with similar diagnoses who do not receive hospice care. Receiving care at home also has a significant positive impact on overall health care costs.
Death is a fact of life. Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. Choosing hospice is not giving up, rather, it is choosing to live fully until you die.
It is not meant to be scary; it is meant to help people live each moment to the fullest and to pass with dignity and respect surrounded by love.
We at Concord Regional VNA are privileged to help patients and their loved ones navigate this journey, and proud to have been providing hospice service to the people of Concord and the 43 other New Hampshire communities we serve for more than 30 years.
Complete Article ↪HERE↩!
—what is medicine’s role?
By Richard Smith
“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.
“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”
Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.
“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”
A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.
One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.
Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”
Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.
A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).
As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.
Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death
“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.
3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.
7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”
Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.
Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money.
The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.
Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”
There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”
All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.
Complete Article ↪HERE↩!
Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago
By Joe Hammond
In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.
In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.
I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.
I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.
There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.
Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.
Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.
I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.
I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.
Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.
When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.
But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.
I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.
Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.
I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.
When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.
It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.
But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.
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Using machine learning, researchers were able to better understand what end-of-life conversations look like, which could help providers improve their communication.
By Jessica Kent
Machine learning tools could analyze conversations between providers and patients about palliative care, leading to improved communication around serious illness and end-of-life treatment, according to a study conducted at the University of Vermont’s (UVM) Conversation Lab.
Discussions about treatment options and prognoses amid serious, life-threatening illnesses are a delicate balance for nurses and doctors. Providers are communicating with people who don’t know what the future holds, and these conversations are very difficult to navigate.
Researchers at UVM wanted to understand the types of conversations patients and providers have around serious illness. The team set out to identify common features of these conversations and determine if they have common storylines.
“We want to understand this complex thing called a conversation,” said Robert Gramling, director of the lab in UVM’s Larner College of Medicine who led the study. “Our major goal is to scale up the measurement of conversations so we can re-engineer the healthcare system to communicate better.”
Researchers used machine learning techniques to analyze 354 transcripts of palliative care conversations collected by the Palliative Care Communication Research Initiative, involving 231 patients in New York and California.
They broke each conversation into ten parts with an equal number of words in each, and examined how the frequency and distribution of words referring to time, illness terminology, sentiment, and words indicating possibility and desirability changed between each decile. Conversations tended to progress from talking about the past to talking about the future, and from happier to sadder sentiments.
“We picked up some strong signals,” said Gramling. “There was quite a range, they went from pretty sad to pretty happy.”
Discussions also tended to shift from talking about symptoms at the beginning, to treatment options in the middle and prognosis at the end. Additionally, the use of modal verbs like “can,” “will,” and “might,” that refer to probability and desirability also increased as conversations progressed.
The findings reveal the importance of stories in healthcare for patients, researchers noted.
“At the end there was more evaluation than description,” said Gramling. “What we found supports the importance of narrative in medicine.”
The team is now focused on using the machine learning algorithm to identify the different types of conversations that can occur in healthcare. This could help providers understand what might make a “good” conversation around palliative care, and how different conversations require different responses. Providers could then match patients to interventions they need the most.
“One type of conversation may lead to an ongoing need for information, while another may have an ongoing need for functional support,” said Gramling. “So one of the ways those types can help us is to identify what are the resources we are going to need for individual patients and families so that we’re not just applying the same stuff to everybody.”
A deeper understanding of these conversations will also help reveal what aspects and behaviors associated with these conversations are most valuable for patients and their families. Educators could then effectively train providers to have the skills needed in palliative care.
Researchers believe that the most useful application of the machine learning tool could be at the systemic level, which could monitor how patients respond to providers in aggregate.
“I think this is going to be a potentially important research tool for us to begin fostering an understanding of a taxonomy of conversations that we have so that we can begin to learn how to improve upon each one of those types,” said Gramling.
“We already measure other processes of clinical care, we just don’t do it routinely for actual communication.”
Researchers have recently applied artificial intelligence tools to the realm of palliative care. A study published in September 2019 demonstrated that a predictive analytics tool can help increase the number of palliative care consultations for seriously ill individuals, leading to improved quality of life for patients and their families.
“There’s widespread recognition of the need to improve the quality of palliative care for seriously ill patients, and palliative care consultation has been associated with improved outcomes for these patients,” said the study’s lead author, Katherine Courtright, MD, an assistant professor of Pulmonary, Allergy and Critical Care, and Hospice and Palliative Medicine.
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