Jan Holman, 68, had been away from her beloved pet dogs and horse for six weeks and was missing them all until she received a special visit – facilitated by her hospice
By Millie Reeves
A terminally ill woman has had the chance to say goodbye to her two dogs and horse thanks to hospice staff.
Jan Holman, 68, was admitted to hospital six weeks ago and is now a patient at the Hospice of the Good Shepherd in Chester.
Her quick referral to the hospice meant she hadn’t had a chance to say goodbye to her dogs, Monty and Rowley, or Bob, her horse of 10 years.
Due to the pandemic Jan was unable to have any visitors at the hospital, and her husband of 46 years, Dennis, said she found having no visitors or personal contact difficult.
After four weeks, Jan was moved to the hospice to receive end-of-life care.
Knowing Jan was also missing her animals, the hospice arranged for a visit from her two Cavalier King Charles Spaniels, Monty and Rowley, as well as her horse, Bob.
Even though she was unable to get out of bed, Jan was excited to have the chance to see the gang one more time.
Dennis said: “It was just such a relief once Jan was moved from the hospital to the hospice in Chester and we were able to have named visitors who could come and see Jan regularly, however we never imagined that we would be able to include Monty, Rowley and Bob on the visiting list.”
He continued: “All the staff here have been wonderful. Jan has been so well cared for, nothing is too much trouble even down to the chef coming every day to see what he can tempt Jan to eat.
“Nothing is too much trouble, including arranging for a horse to visit!”
Before her illness Jan, who has lived in Chester all of her life, could be seen dressed as Chester’s Tudor Lady delivering tours of the city where she has been a Blue Badge Tour Guide for 37 years.
Jan said: “I just can’t believe what the staff here at the hospice have done for me. Until a few weeks ago I was still riding Bob every day and he is such an important part of my life, and I have missed him so much.
“I knew that arranging for my dogs to visit was possible as we had a neighbour who was a patient at the hospice a few years ago and we were allowed to bring the dogs to visit her, but I just didn’t expect that they would ever be able to give me the chance to see Bob one more time.”
Louise Saville King, deputy ward manager at the hospice, said: “It was obvious when Jan first came to us that she is passionate about her animals and that horses have played a large part in her life for many years.
“The ethos of hospice care is not just about caring for the clinical needs of our patients but also looking after their emotional and spiritual needs as well.
“It’s about making a difference to our patients and their families in whatever way we can.
“We know that sometimes people are scared at the thought of coming to the hospice, but it’s a positive place where people are supported and well cared for.
“The work of the hospice really does make a difference to people’s lives.“
“Many times we adopt pets because we’re struggling ourselves, and we need that companionship. During the pandemic, or during other difficult times in your life, you often hear, ‘This pet got me through such a difficult part of life.’ That emotional connection to your pet is so vital.”
Dealing With the Loss of a Pet: Why Is It So Painful?
Given how much comfort pets bring, it’s understandable that losing them can be emotionally devastating. “Our animals become a part of our family,” says Dr. Sullivan. “They provide unconditional love and support, which is something that people don’t get from a lot of different places.”
As an example, she cites how excited pets often are to see you when you return home after being away. “It doesn’t matter if you’ve been gone for two hours or two days, the way that they greet you is just so beautiful,” says Dr. Sullivan. “It’s like you’re their world.”
Losing this unconditional love is understandably very difficult. “As humans, we need to feel that love and connection and to know that something views you in such a special way,” she adds. “That’s why it becomes so painful when we lose our animals.”
Grieving a pet after euthanasia
Understandably, it’s perfectly normal that grieving the loss of a pet from euthanasia can be much more difficult. “We want to see a pet death occur naturally, when they are at a ripe old age,” she says. “But part of the problem is their lives are so short. You never get enough time with your pet.”
Euthanasia is often the right decision for your pet, so they’re no longer hurting. But knowing a health decision you made led to their death can add extra layers of guilt and exacerbate your pain and grief.
“You certainly don’t want to see your pet suffer,” says Dr. Sullivan. “But there is that grief that’s associated with that guilt, and questioning yourself: ‘Am I making the right decision?’ That’s why it’s important to make that decision with your trusted medical professionals and other family members.”
Is grieving a lost pet different than grieving a human?
Sullivan stresses that grief isn’t “one size fits all” after a death. In other words, it’s impossible to compare your reaction to losing a cherished pet versus losing a loved one. “For some people, grieving a pet is more difficult,” she says. “For other people, grieving a human is more difficult. For some people, both are very, very difficult. But I don’t think a pet death causes less grief than a human one.”
However, because a pet is such a treasured member of your family, it’s not out of the ordinary to feel a death very deeply. “It depends on your relationship with a pet,” adds Dr. Sullivan. “Pets are a part of your life. They provide that additional support and love, and they’ve gotten you through some very difficult times. And so in some cases, grieving a pet is even more difficult than grieving a human being.”
How to Grieve a Pet
As with grieving a loved one, dealing with the loss of a pet takes time. Here’s what to keep in mind:
Realize your grief is valid
Dr. Sullivan says being an emotional wreck after a pet dies is completely OK. “There have been times when patients have been in my office absolutely more devastated by the loss of their pet, or by having to make the decision to euthanize a pet, than about anything I’ve ever seen them upset about,” she notes.
This extreme reaction to loss goes back to the idea that pets are part of our family. “They may be the most important thing to a person, honestly,” says Dr. Sullivan. “We have to have to normalize that this grief is real.”
Recognize that grief looks different for everyone
Experts often explain grief using the Kübler-Ross model, which outlines five different phases you go through: denial, anger, bargaining, depression, and acceptance. (Dr. Sullivan prefers to use “adaptation” over acceptance: “Acceptance is more passive, whereas becoming more adaptive is more active. It lets us ask, ‘What can we still do?’”)
Still, your journey through these phases can be different, even from one day to the next. “There’s no consistent way that you approach grief, denial, anger, bargaining, or any of those phases,” Dr. Sullivan explains. “Each person moves through these stages at their own unique time and in their own unique way, and they can go back and forth. It’s not a linear phase.”
“What’s important is that we recognize that people are experiencing these feelings, and we support them and guide them in each of these different domains of emotion,” she adds.
Create physical memorials
Physical memorials are one of the easiest ways to remember a pet. When Dr. Sullivan’s family lost a beloved Yorkshire terrier, Reiley, the vet sent them sympathy cards and gave them a printout of the dog’s paw and muzzle prints alongside a poem called The Rainbow Bridge.
Dr. Sullivan also put together a memorial photo book, and she still keeps the terrier’s collar and tags hung in a special place of honor in her house. Her family also created a special place in their backyard near where he’s buried. “We have a space set up with a special flower that blooms year after year for him, and it has a little statue with his name on it, so we can go back there and look at it,” she says.
Join a support group
Some people prefer to grieve privately, out of the public eye. However, for those who find solace in talking to other people, Dr. Sullivan says joining a support group can be helpful. These can be social media-based spaces for grieving or even in-person groups.
Make sure your entire family is supported
Losing a fuzzy buddy affects everybody in your household. Dr. Sullivan says you might have to comfort your other pets, as they are also feeling grief. “If you have multiple pets in the household, they’re going to grieve the loss of their companion.”
Kids might also need extra support, as losing a pet might be their first personal experience with death. “This may be their first opportunity to really lose somebody,” says Dr. Sullivan. “We have to make sure that we help support them in situations of grief, death and dying. It’s very new to them, and it can be very scary to them.”
Above all, keep in mind that coping with the loss of a pet takes time. You may not get another pet right away — and, even when you do welcome another pet into your family, things will still take an adjustment period. “In the end, you realize your pet wants you to be happy,” says Dr. Sullivan. “I don’t think you ever move on — you move forward, and the relationship you have with each pet is different. No one’s going to replace that.”
From the start of the pandemic to 24 September 2021, deaths at home in England and Wales have been 37% higher than the 2015-2019 average, according to the Office for National Statistics.
For every three people who used to die at home, four now do. That’s more than 71,000 “excess” deaths, only 8,500 of which involved Covid. Even as mortality elsewhere fell back to past levels, dying in private homes has persistently remained above average. A natural question arises: are these “extra” deaths or a shift from other locations?
Fortunately, National Records of Scotland publishes excess death calculations by location and major causes of death. Its most recent data shows the leading causes of death were cancer, heart disease and stroke. In 2021, the combined total for these causes was only about 1% above the 2015-2019 average, with around 260 extra deaths. However, deaths from these causes at home were 36% higher than recent years, with a corresponding decrease in care homes and hospitals. These additional deaths at home were not “extra”, but resulted from a major, systematic change in where people were dying.
So what’s the reason for this change and, perhaps more importantly, what was the quality of these deaths? How many were free of pain and experienced intimate care and compassion from loved ones and how many have died at home alone, fearful of getting infected in hospital? Existing statistics struggle to answer these important questions.
NHS England has sought to “personalise” end-of-life care in its long-term plan. Reported statistics from surveys and patient records about where people wish to die can exclude “missing” responses, such as when no preference is forthcoming. It is unclear if the shift towards dying at home is, on balance, a positive or negative development.
Every family has to deal with a death and live with its aftermath. In the words of Sam Royston, director of policy and research at Marie Curie: “It is critical that we ensure that those who die at home have all of the support and assistance they need for the best possible death.”
There is no right or wrong way to grieve. Everyone process a loss in their own way, and on their own time. Grief is also very sneaky: You may think you have dealt with it, only to find that a certain song, scent, or memory causes you to experience the sting of loss all over again.
As it turns out, some people have found that having a transitional object may help them grieve a person who has died, while still holding part of them close. Here’s what that could look like.
What are transitional objects?
Transitional objects come up most frequently in the context of kids—particularly those who may be dealing with separation anxiety. Here’s how the concept was described in a 2018 Lifehacker article:
If a child has a tough time leaving you, a transitional object such as a stuffed animal or favorite toy can be helpful. For younger kids, it allows them to maintain a sense of comfort and consistency.
So what do transitional objects look like for adults? Like the rest of the grieving process, it’s highly personal. While some people may find comfort in photos or videos featuring an important person in their life who has died, others respond more to a tangible item, and find that having something that belonged to the person they lost makes them feel closer, according to Lisa Kanarek in an article for Well+Good.
How do transitional objects help people process loss?
Let us start by saying that some people don’t find transitional objects comforting at all, and, in fact, find it easier to avoid the deceased’s personal belongings altogether. But for others, they’re an integral part of their grieving and healing process.
“For a lot of people, it’s evidence that the person existed, especially if the death was unexpected,” Megan Devine, LPC, psychotherapist and bestselling author of It’s Okay That You’re Not Okay told Well+Good in an interview. “Even when the death was expected, sometimes there’s that unreality like they were here, and now they’re not.”
It began with a strange feeling in her hand, a weakness in the thumb that made it difficult to hold a pen or grip a computer mouse.
In November 2018, a doctor gave Martha Sepúlveda her diagnosis: amyotrophic lateral sclerosis, the progressive neurological disease known in the United States as Lou Gehrig’s disease. In the months that followed, the Colombian woman lost control of the muscles in her legs — and she knew it would only get worse.
She would cry at night, overwhelmed by the thought. “What happens once I can no longer get into bed or use the bathroom without help?” she would ask her son. “How far am I going to go?”
Sepúlveda started reading about an option that could relieve her fear of what was to come: Euthanasia. Colombia, she learned, is the only country in Latin America — and one of only a few worldwide — that permits patients to end their lives.
Until this year, the option has been available legally only to those who are expected to live for six months or less. On Sunday, Sepúlveda, who considers herself a devout Catholic, plans to become the first person in Colombia without a terminal prognosis to die by legally authorized euthanasia.
Colombia’s constitutional court ruled in July that the right to euthanasia — recognized here in 1997 — applies not only to terminal patients, but also to those with “intense physical or mental suffering from bodily injury or serious and incurable disease.”
The ruling has divided the faithful in this majority-Catholic country. Church officials have described euthanasiaas a “serious offense” to the dignity of human life; a member of the national bishops’ conference urged Sepúlvedato “calmly reflect” on her decision and invited all Catholics to pray that God will grant her mercy.
But Sepúlveda, 51, has been resolute in her response to those who question her plan — or her faith.
“I know that God is the owner of life,” she told Colombia’s Caracol News. “But God doesn’t want to see me suffer.”
This South American nation is an unlikely pioneer in euthanasia.An estimated 73 percent of the population is Catholic. Eleven Catholic feast days are national holidays. Access to abortion is sharply limited.
And yet Colombia was one of the first countries in the world to decriminalize euthanasia, and one of only a small number — alongside Belgium and the Netherlands — to extend the right to non-terminal patients. No U.S. state permits euthanasia; 10 states and the District of Columbia allow medically assisted suicide for terminally ill, mentally capable adults with a prognosis of six months or less to live.
Now, advocates hereare hoping their movement will spread across Latin America, according to Camila Jaramillo, a lawyer representing Sepúlveda with the Laboratory of Economic, Social and Cultural Rights (DescLAB).Campaigns are underway in Uruguay and Chile. In Peru this year, Lima’s superior court ruled that a woman with polymyositis should be permitted to die by euthanasia when she decides she is ready.
How did a country of Catholics, often led by center-right politicians, become a leader in euthanasia rights?
Eduardo Díaz Amado, director of the Bioethics Institute at Pontifical Xavierian University in Bogotá, traces the development to the country’s long civil war and the violence wrought by drug lord Pablo Escobar.In 1991, in response to the country’s instability, Colombia rewrote its constitution. Unlike its “paternalistic” predecessor, Díaz said, the new constitution expanded individual rights, emphasized “the respect of human dignity” and underscoredthe separation of church and state.
The document also established a constitutional court to help define these newly recognized rights. Within six years,the new court, now with several progressive judges, took up a case from a plaintiff who argued that “mercy killings” should carry the same penalty as any other homicide.
The court disagreed. Instead of increasing the penalty, it moved to decriminalize euthanasia — becoming the only country to do so on the basis of constitutional arguments, Díaz said.
But it took more than 15 years for authorities to apply the ruling. As political leaders sought to avoid the subject, doctors such as Gustavo Quintana met growing demand for the practice. Known as the “doctor of death,” Quintana is said to have provided euthanasia to close to 400 patients before his recent death.
In 2014, the court ordered the government to issue guidelines so that hospitals, insurers and health professionals would know how to proceed with euthanasia requests.
The movement for euthanasia rights has drawn unexpected allies: Catholic priests. Alberto Múnera, a theology professor and Jesuit priest at the Pontifical Xavierian University in Bogotá, lectures his students on the “exceptions” to the “absolute value of human life” in church teaching. When Catholics follow their own consciences, even when that means choosing to end their own lives, he argues, they will “behave well” in the eyes of God.
Since the government began regulating the practice in 2015, 157 people have died by euthanasia in Colombia, according to official data. One hundred and forty-one hadsome type of cancer. But many others, including Sepúlveda initially, were denied requests because their illnesses were not deemed terminal in the short term. Last year, a team of lawyers filed a lawsuit asking the constitutional court to extend the right to patients with non-terminal diagnoses.
The court went further, recognizing a right to euthanasia for those with “intense physical and mental suffering.” That was a surprise even for the lawyers, who did not mention mental illness in their complaint. And it drew immediate rebuke from church leaders and conservative politicians.
“It opens up the possibility for people who are depressed or simply don’t want to live anymore,” said Sen. María del Rosario Guerra, a member of the Democratic Center party of President Iván Duque. “We are promoting a culture of death
Bishop Francisco Ceballos, a leader within the national bishops’ conference, has criticized news outlets here for depicting Sepúlveda “heading toward death with so much joy.” He has emphasized the church’s support for palliative care as an alternative to euthanasia. “We believe that death cannot be the solution to suffering and pain,” he said.
The court’s ruling in July came less than a month after the death of Yolanda Chaparro, a 71-year-old Colombian woman with ALS who had requested euthanasia a year earlier but was rejected because her prognosis was not deemed terminal. She continued to deteriorate until she could no longer breathe without oxygen, struggled to move on her own, and lived with a fear that she could drown inher own saliva, according to her daughter. She was granted her wish to end her life in June.
Shortly before her death, Chaparro sat down with her relatives to explain her decision. “For me, to live is to fly,” she said, in an interview recorded by relatives. “To live is to walk, to create. To live is to commit to dreams you’ve formed your whole life. So seeing that each day everything is more difficult … all of that is over.”
When Federico Redondo Sepúlveda learned of the court ruling, he broke down in tears. The 22-year-old law student, Martha’s only child, had spent months helping his mother file a request for euthanasia.
“I didn’t think it would happen so soon,” he said. He had tried to find the strength to support his mother in what for him has been an excruciating choice.
“She kept saying the same thing, that if I loved her then I would support her,” he said.
They have spent his mother’s final days mostly watching Netflix — a joy she discovered during the coronavirus pandemic. They’ve watched and re-watched “The Pianist,” “Forrest Gump,” and “The Shawshank Redemption,” movies that remind them of years past.
The family doesn’t have special plans for his mother’s final night Saturday. She hopes to spend it as she always does, by going to bed early. She plans to end her life at 7 a.m. on Sunday, when she would normally be heading to church. Her son will be the only person in the room with her, he said.
Her body is to be cremated immediately. Federico plans to spread her ashes in the Caribbean Sea, off Colombia’s northern coast. But first, he will join with their family, her remains beside him, and take the Eucharist
In November 1963, the writer and psychedelic explorer Aldous Huxley laid in bed, unable to speak. He was dying of cancer. One of his final acts was to pass a handwritten note to his wife Laura.
His famous last words: “LSD, 100 µg, intramuscular.”
It was Huxley’s dying wish: a large dose of acid, please. Laura Huxley fulfilled the request twice during her husband’s final hours.
First synthesized 25 years before Huxley’s death, LSD was still legal in 1963. Scientists were studying it as a potential treatment for alcoholism and other ailments, as well as investigating its similarity to other psychedelics. It wasn’t until 1968 that the federal government outlawed these drugs due to their association with the cultural turbulence of the 1960s.
Today, several decades later, terminal cancer patients are once again taking psychedelics. This time around the drugs are being administered by doctors and scientists in controlled settings—and they are not microdoses. The results of this research have been nothing short of remarkable.
Alleviating anxiety and despair
Terminal patients often suffer from feelings of intense anxiety and despair after receiving their diagnoses. For many, this is just too much to bear. The overall suicide risk for these patients is double or more compared to the general population, with suicide typically occurring in the first year after diagnosis.
Terminal patients have twice the suicide risk of the general public. Psychedelics may help reduce their fear and suffering.
That’s where psychedelic therapy may help. After a single large dose of psilocybin, taken in a curated space and supervised by a pair of doctors, many patients report feeling reborn. It’s not that the underlying physical disease has been cured. Rather, the drug prompts a shift in the theme of their emotional self-narrative—from anxiety and despair to acceptance and gratitude.
It may seem curious to think about psychedelic drugs, often associated with hippies and the Grateful Dead, as clinical-grade tools for overcoming our primordial aversion to death. But maybe it shouldn’t be. Maybe this is only surprising if your window of historical perspective is too narrow. Maybe these “novel findings” are, in a sense, a return to somewhere we’ve been before.
Psychedelics at the dawn of civilization
In late 2020 I spoke to Brian Muraresku, author of The Immortality Key: The Secret History of the Religion With No Name, about the use of psychoactive plant medicine throughout antiquity. Our podcast conversation covers this history in more detail, but it’s clear that humanity’s relationship with psychoactive plants extends back at least to ancient Greece—if not further. It’s hard to look at prehistoric cave paintings like the Tassili mushroom figure and not wonder if psychedelics played a part in their creation.
Western philosophy may have developed with help from psychedelics as well. In Plato’s well-known allegory of the cave, a group of prisoners live chained to a cave wall, seeing nothing but the shadows of objects projected onto it by fire. The shadows are their reality; they know nothing outside of it. Philosophers, Plato states, are like prisoners freed from the cave. They know the shadows are mere reflections, and they aim to understand deeper levels of reality.
Was Plato tripping?
If that sounds like someone who’s explored those deeper levels with psychedelic assistance…well, maybe it was. In his book, Brian Muraresku explores the significance of the Eleusinian Mysteries, secret ceremonies that involved death and rebirth. For centuries, philosophers and mystics traveled to the Greek town of Eleusis to partake in a ritual that involved an elixir known as pharmakon athanasias, “the drug of immortality.”
“Within the toolkit of the archaic techniques of ecstasy–plant medicine just being one among many–something you find again and again, in Ancient Greece and other traditional societies, is this sense that to ‘die’ in this lifetime, or achieve a sense of timelessness in the here and now, is the real trick.” -Brian Muraresku
Contemporary archaeologists, digging outside Eleusis, have unearthed ancient chalices containing a residue of beer and Ergotized grain. Ergot is a fungus that grows on grain. It produces alkaloids similar to LSD. It’s possible, then, that influential thinkers like Plato were inspired by genuine psychedelic experiences.
This connection between psychedelics and death didn’t end with Eleusis. It survived, often repressed and hidden from view, right through the time of Aldous Huxley.
The connection re-emerges in the 1960s
In the 1960s, Timothy Leary co-wrote a book called The Psychedelic Experience: A manual based on the Tibetan Book of the Dead. Leary, the exiled Harvard professor and psychedelic guru, dedicated the book, “with profound admiration and gratitude,” to Aldous Huxley. It opens with a passage from The Doors of Perception, Huxley’s essay on the psychedelic experience. Huxley is asked if he can fix his attention on what the Tibetan Book of the Dead calls the Clear Light. He answers yes, “but only if there were somebody there to tell me about the Clear Light.”
It couldn’t be done alone. That’s the point of the Tibetan ritual, he says: You need “somebody sitting there all the time telling you what’s what.”
Huxley was describing a trip sitter, someone who guides a person along their psychedelic journey. Sometimes it’s an ayauasquero in the heart of the Amazon. Sometimes it’s a doctor holding your hand in a hospital.
Seeking rebirth within the mind
In his book, Leary grounded Eastern spiritual concepts in the understanding of neurology we had at the time. The states of consciousness achieved by meditation masters and those induced by three hits of Orange Sunshine, he wrote, may actually be the same. Both involve dissolving the ego (“death”) and allowing it to recrystallize as the default mode of consciousness returns (“rebirth”).
Leary wasn’t talking about magic. Scientists know these as “non-ordinary brain states,” inducible by rigorous attentional practice (meditation), pharmacological intervention (psychedelics), and organic decay (dying).
The ability of psychedelics to induce these remarkable brain states may also be why they’re showing such promise in alleviating the very ordinary fear of death.
Today’s psychedelic treatments: Coping with death
So what, exactly, has recent research on psilocybin as an end-of-life anxiety treatment involved?
A few small studies have seen psilocybin administered to dozens of cancer patients. They’ve been conducted in a randomized, double-blind, placebo-controlled fashion. In general, a large majority of patients showed sustained, clinically significant reductions in measures of psychosocial stress and increased levels of overall well-being.
For example, in one study, 80% of the patients found that a single dose of psilocybin quickly relieved their distress. Remarkably, in some patients that positive effect lasted for more than six months.
Sprouting new physical connections
What’s going on at the neuronal level to produce those changes? We don’t know for sure, but some preclinical research has given us a hint. Both psilocybin and LSD have been shown to induce rapid and lasting antidepressant effects in lab animals.
Early studies hint at how psychedelics may produce positive changes in the brain.
Early indications are that psychedelics may allow brain circuits to rapidly sprout new physical connections. This is exciting, but again: These are non-human studies, and it’s early.
It’s gratifying to see any of these studies happening, frankly. This is research that’s been stalled by the Schedule I status of psychedelics for half a century. Much of this work requires obtaining a special federal waiver to study banned substances, which slows progress.
Potential help for end-of-life patients
Fortunately, the FDA recently designated psilocybin therapy as a “breakthrough therapy” and the DEA has proposed increasing the supply of psilocybin for research. This should speed up the rate at which we understand the clinical efficacy of psilocybin and related psychedelics.
Here’s more good news: In terms of psilocybin’s efficacy as a treatment for end-of-life anxiety, larger human trials are already underway.
Dr. Stephen Ross, one of the field’s leading researchers, has described the significance of this work: “If larger clinical trials prove successful, then we could ultimately have available a safe, effective, and inexpensive medication—dispensed under strict control—to alleviate the distress that increases suicide rates among cancer patients.”
Huxley: Ahead of his time
In one sense, Aldous Huxley was ahead of his time. More than a half-century before today’s renaissance in psychedelic research, his own experiences had evidently brought him to the conclusion that the best way to experience death was in a psychedelic trance.
In another sense, though, Huxley was one in a long line of creators stretching back to ancient Greek philosophers and perhaps even to prehistoric cave artists. They may all have used psychedelics to catalyze their outward creativity and comfort their inner distress.
Huxley titled his famous introspective essay, The Doors of Perception, after a quote from the English poet, William Blake: “If the doors of perception were cleansed everything would appear to [us] as it is, infinite.”
We will never know what he experienced in the final hours before his death, after handing that note to his wife. I like to think that for him, the last breath seemed to last forever.
Amid an ongoing public debate in France on end-of-life palliative care, doctors tell Le Monde how they secretly help their patients die.
By Laetitia Clavreul
As the president of a doctor’s union says of treating the chronically ill, “We’ve all pushed the syringe” at some point in their careers.
Death is a topic that doctors rarely discuss among themselves. Too heavy, too personal. Instead, these things tend to be between attending physicians and their patients, who they follow until their very last minutes.
French President François Hollande has promised a draft bill on end-of-life assistance, and the role doctors play for chronically ill patients is at the heart of the debates. Some have agreed to tell us about their practice, whether anonymously or using their names.
“Doctor, will you help me?” The question is sometimes asked when the end of life is not that near. “I tell them that I am not the right doctor for that,” says doctor O., who has been a general practitioner in the west of France for the past 30 years. “I don’t claim to be the one to decide.”
But when the final moments truly have arrived, it’s a different story. He helps patients “go” when they are in pain, when life has become unbearable. Often, he says, “They do not voice any request. But when we touch their forehead with our hand and they are looking straight at us, they tell us with their eyes: ‘I’m ready.’”
He recalls a Saturday night at 11.30 p.m., when an entire family was holding vigil for a mother in pain and asked him to “do something,” because that was what she wanted. He repeated that he was not allowed to, that he could only increase the morphine dosage. “But I knew what the outcome was going to be,” he says.
Dr. Stéphane Pertuet, from the northern French town of Barentin, says a patient once asked him, “You’ll do what’s necessary, won’t you?” The patient was telling him he was scared. The doctor comforted the dying man, and said that he would.
Pertuet remembers a former military man, who made him promise not to hospitalize him “at the end,” and to do “what’s necessary” so he could die “in a dignified” manner. One day, when he was in a state of shock, he told the doctor, “Finish me.” “Of course, I didn’t do it,” Pertuet says. “But I made sure that he wouldn’t suffer by setting up a graded treatment, aware that it could kill him. If he felt that I was hesitant, it would have been a fiasco.”
Doctors use various drugs, all of them legal, to help ease a dying patient’s pain and usher them peacefully into death. Curare or potassium chloride would immediately lead to the death of the patient. But using those drugs would be a crime. What doctors can legally do is prescribe sedation to relieve suffering and agony. They can mix anxiolytics, morphine or other analgesics, leading to respiratory depression and death a few hours or days later. What the law forbids is “intentionally” causing death.
In the patient’s shoes
Words are important, says Dr. G., a general practitioner in southeast France. “Yes, I help people die,” he says. “Killing is different. It’s an immediate action. Increasing the dosage has nothing to do with euthanasia.”
When Pertuet arrives at the home of a patient he is treating, he doesn’t necessarily have a preconceived idea of what he is going to do, he says. “I suppose I sense that I will lead the patient to death, but I have no other choice. Otherwise, the patient suffers.” He tries to step into the patient’s shoes, taking into account his personality, culture and religion.
Bernard Senet, a retired physician working as a medical officer at an association advocating legalizing euthanasia, has worked in private practice and also in a palliative care environment. When patients are suffering agonizing pain, Senet says it is his duty to help them.
“When the patient is uncomfortable despite the morphine, we open up the automatic syringe and it all goes,” he says. Once or twice a year over the course of his career, he has found himself in this kind of situation, and it is no doubt the case for other physicians too.
In fact, he knows it is because he often receives calls from fellow doctors asking for his advice. “I’m not an exception,” he says. “For fear of judges, the others don’t want to say that we do it, in appropriate conditions, and that it’s never easy,” he admits. “But from the moment you stop the treatments, you know you are sentencing the patient to death. From the moment you dispense Hypnovel at the hospital, you know you will cause a respiratory arrest.”
“I assist until death”
Not every doctor is willing to assist their patients in death, but for the ones who do, they regard it as part of their job. “I remember my first assistance very clearly,” Pertuet says. “It is the quintessence of our commitment. It is then very important to be a good technician and a very good psychologist. But it always leaves a mark.”
Dr. R., a general practitioner specializing in palliative care near Paris, says he assists “until death, because death is part of life.” But recently, a seriously ill patient under 70 years old asked him if he would agree to give him “an injection.” Even if the law changes, the doctor says he would never go that far.
The law, in fact, is not necessarily at the heart of everyone’s concerns. Pertuet hasn’t really altered his handling of these cases over the years, he says. “I watch the debates between experts with amusement. They hide behind religious beliefs, sacrosanct ethics and palliative care. But for me, the more I think about it, the less sure I am.” What is important “is what they never talk about: humanity, technique, the doctor-patient bond.”
The French Leonetti legislation, passed in 2005, has made doctor G. more relaxed. “We used to be limited on a legal basis,” he says. “We couldn’t handle therapies when we knew we were at a lethal level.” Even the French medical college, which he characterizes as typically “quite retrograde,” last year announced its support of terminal sedation for patients with insurmountable pain, calling it “a duty of humanity.”
“It’s not a step towards euthanasia,” insists Dr. Jean-Marie Faroudja, ethics head of the national medical college council, pointing out the necessary commitment to the Hippocratic Oath. “Killing must remain prohibited.” He acknowledges that “between causing death and putting the patient to sleep until it arrives, the difference is narrow.” But it exists.