Palliative care experts say it is not uncommon for people in hospice care to perk up briefly before they die, sometimes speaking clearly or asking for food.
By Judith Matloff
Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.
In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.
“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”
Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.
Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.
Dr. Blinderman has theories about causes, however. He postulated that as organs shut down, they can release a steroidlike compound that briefly rouses the body. In the specific case of brain tumors, swelling occurs in the confined space of the skull. The edema shrinks as hospice patients are weaned off food and drink, waking up the brain a bit.
These windows of energy can startle family members sitting at the bedside. Those who hold out hope that their loved ones may somehow recover may see the comebacks as encouraging. Some find the little flickers disturbing or even heartbreaking.
“I always provide a lot of anticipatory guidance, that you should not be surprised or alarmed or that it means that your loved one is healing,” Dr. Blinderman said. “Obviously you don’t want to dash hopes, but you have to make clear that Dad is not rising like Jesus Christ.”
Dr. Janet Bull dispenses the same advice, as chief medical officer at the Four Seasons Compassion for Life, a nonprofit hospice care organization in North Carolina. During her 18 years in the field, Dr. Bull has seen many rallies, but one in particular stands out.
“I had this one patient, he was demented for years, and then he said things near the end that blew away his mom,” she recalled with wonder. “He hadn’t had a meaningful conversation with her for 10 years.”
Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.
Mr. Mastrojohn speculates that the social support at a hospice can give the chronically ill more pep than in a sterile hospital where they’re hooked up to machines.
Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.
“People know when they are dying. They have this internal gut feeling that tends to expand at the end of life, and they seek a strong final connection,” said Dr. Bull.
Other doctors nodded their heads when told about Ms. Linnee’s request for a last meal. They said that often ralliers will ask for a particular food associated with childhood or comfort. The request is generally explicit, say, a Diet Sprite rather than any old beverage.
Dr. Martha Twaddle cited the case of an Illinois woman in her 50s who was reaching end-stage heart failure. She had been barely reactive, but then sat up and asked for a hamburger famous in Skokie.
“It’s some enormous hamburger, the size of your face with all this stuff on it. She took two bites and then fell back asleep,” said Dr. Twaddle, a physician associated with the Northwestern Medical Group in Lake Forest, Ill., who has worked in palliative care since 1989.
She has had nonreactive patients jolt up to ask for a relative, or share final wishes before they die. “Sometimes they want to give instructions to the family, like, ‘Don’t forget to take care of the car.’ Something mundane but important to them.”
Palliative care experts suggest accommodating a loved one’s request, no matter how odd it may appear.
Dr. Charles Wellman, the longtime chief medical officer at the Hospice of the Western Reserve in Cleveland, has had patients who become alert only for the doctor. They will not talk for days, and then their eyes open when Dr. Wellman walks into the room. “I think they get tired and withdrawn,” he speculated. “They’re transitioning to another existence, and they have work to do on that. Maybe they get annoyed with family, but they might make an effort to respond to the doctor.”
But rallies frequently revolve around a relationship, particularly if the patient is waiting for a child to come from out of town to pay last respects.
“We had one patient whose son was in the military,” Dr. Twaddle said. “There was no way the son could get to her for a month. The woman was out of it during that time. He finally came. She responded, and then passed 15 minutes later.”
Complete Article ↪HERE↩!
By Helen Bushby
The old man lies in the hospital bed, drawing his last, rattling breath as he fades away from life.
The film camera, positioned just next to him, keeps rolling. We see the nurses move him to another room before they gently clean his body.
“Nobody wants to die but it’s a natural thing, we are biologically determined to die,” says documentary maker Steven Eastwood.
His film, Island, lays bare the dying process by filming four people with terminal illnesses.
“Death is seen as a shameful thing – we think we’re a progressive society, but we repress and deny death,” Steven says.
“We’re no better than the Victorians.”
He was a quiet onlooker during the last year of his subjects’ lives, filming them in their homes before they became part of the daily rhythms of life in a hospice.
“To say you don’t want it to happen, you’re putting off facing something,” he says.
“We need better death awareness to be more familiar with our mortality. I don’t think that’s ghoulish.”
The documentary came about after Fabrica, a gallery in Brighton, commissioned a film about end of life.
The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.
He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”
Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.
He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.
“So I realised I didn’t know very much about what palliative care is.”
Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.
“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.
“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”
He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.
“The most radical, extraordinary people in our society are the least visible,” he says.
“They’re the carers. And the care we receive at the end of our lives is extraordinary.
“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”
He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.
Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”
He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.
‘He was living to smoke’
“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.
“This is part of what palliative care is – helping someone smoke until they die.
“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”
Alan invited him to film his last moments.
“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.
“He wanted to do something radical with his death, he felt quite radical about his life.
“He believed our tissue is just a vehicle and we translate into something else.
“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”
Steven recalls watching Alan die.
‘Bliss in his eyes as he died’
“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”
Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.
“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.
“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”
Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.
“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.
“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.
“He’s the person who I get upset thinking about.”
The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.
“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”
He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.
Steven talks about the pressure to be “productive, youthful, to look good”.
“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.
“I do think it’s challenging to confront your own mortality.”
Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.
He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.
“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.
“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.
“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.
“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”
Complete Article ↪HERE↩!
By Carol Rääbus and Roisin McCann
When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.
“I was really frightened.”
It was Andreas’s first experience of being with a dying person and it made him anxious.
“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.
“And then he had one final really deep inhale and exhale, and it was fine.
“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.
“Death isn’t weird at all, really. It’s quite normal and kind of OK.”
The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.
What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?
We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.
When should I visit someone in hospital or hospice?
Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.
Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.
Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.
Should I bring food, photos or mementos?
Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.
Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.
End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.
Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.
“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.
Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.
What should I say?
Not knowing what to say is one thing many people in this situation worry about.
Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.
“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.
“Or let the silence be there.”
Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.
“Often that presence is a reassurance to them that things are all OK,” he says.
If being silent and still is difficult, you could take something with you to keep yourself busy.
Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.
Andreas’s advice is to be open and admit you’re scared.
“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.
Should I hug them if they look frail?
Giving a loved one a hug is often the quickest way to let them know you care.
But if you’ve never hugged your uncle before, don’t feel you have to.
Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.
Maria recommends a very gentle hand massage as a way of making connection and comforting someone.
Father Mark agrees.
“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.
Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.
I think they’re dying now. What do I do?
Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.
Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.
“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.
“All those things can be a part of it.”
Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.
Debra was with a family in an aged care facility when their loved one was dying.
“They went straight into storytelling,” she says.
“He was already unconscious. His fingers were already turning black.
“They held vigil, they talked around the bed. They used his name a lot and they talked to him.
“They gave him the most beautiful farewell. It was lovely.”
No-one is dying yet. But can I be prepared when it comes?
Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.
Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.
Their advice is to think ahead now.
“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.
“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”
Complete Article ↪HERE↩!
Death doulas: the end-of-life guides who are recreating the dying experience
By Isabel Bird
When Rebecca Lyons’ great aunt died, her body remained with the family.
Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.
“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.
“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”
It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.
Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.
A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.
Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.
Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.
Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.
She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.
“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.
“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.
“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”
Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.
Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.
She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.
“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.
Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.
“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”
Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.
“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.
“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”
Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.
Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.
Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.
She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.
“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”
Ms Jarvis stressed that early planning was important.
“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.
“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”
Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.
Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.
“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.
“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”
She added that alternative options are actually a return to the old way of doing things.
“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.
“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”
Complete Article ↪HERE↩!
By Parul Sehgal
“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”
Book reviewers, I’m afraid, have played their part.
The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”
Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?
Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.
But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”
It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.
This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).
To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”
“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.
Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”
Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”
Complete Article ↪HERE↩!
Pet dogs often have a peaceful death that forestalls protracted suffering and pain. Why can’t we do the same for humans?
[I] killed my dog last year. Mika was a shelter mutt, so she was around 10 or 12 years old; I can’t be sure. Twelve dog years would have put her at around 80 human years, which is a pretty good run. But what’s strange about having a dog is how quickly they age relative to us – they start out younger than we are, catch up for a time, and then pass us by, declining into their twilight years, all in the space of a decade or so. As witnesses to that accelerated timeline, having a pet means that we often end up experiencing their eventual demise and learning something about death in the process.
Mika was a great dog. Obviously abused before ending up at the shelter, she had scars on her head when I rescued her and, whenever I took a broom or rake in my hand, she would cower in fear. She was easily overwhelmed when other dogs came up to sniff her, and would often growl defensively. But with time she grew to be less apprehensive and almost pathologically affectionate, if there is such a thing with animals, demanding to be petted by anyone who happened to be near. She was a great companion watching TV on the couch during my single years, and she helped me win the attention of the woman, a veterinarian, who would eventually become my wife. In fact, my wife has often joked – and maybe it isn’t a joke at all – that she would never have gone out with me in the first place if I hadn’t had a dog.
For whatever reason, the way I’d always pictured the proper death of one’s dog was like a scene taken from the 1957 Disney film Old Yeller (1956): after years of steadfast companionship, when man’s best friend no longer derives joy from chasing rabbits and can barely lift his head, his owner has to muster the resolve to get out the rifle to put him out of his misery. Although an oddly bucolic fantasy for someone living in Los Angeles, at least part of it was no doubt influenced by how I’d learned to think about death as a physician.
In human medicine, we’re used to implementing any and every life-saving intervention right up to the very end. As a medical intern 20 years ago, I remember thinking about the futility of that approach with patients in pain and suffering from multisystem organ failure, sustained only by machines and a regimen of some 30 or 40 medications, and unlikely to ever make it out of the hospital. What was the point? Whatever happened to quality of life? But those reservations be damned, we never gave up, and among the interns who transferred care to each other from shift to shift, the dictum of patients ‘not dying on my watch’ was something to which we all held fast.
As long as there were no ‘Do Not Resuscitate’ orders in the chart asking us to withhold ‘heroic efforts’, we rarely considered doing anything less to prolong life, and financial cost was never part of the equation either. As far as hastening death, that was never even mentioned. After all, the original Hippocratic oath states: ‘I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.’
[W]hen Mika, who’d had hip dysplasia from the start, developed increasing difficulties walking and was in obvious pain much of the time, my wife and I put her on medications and even tried acupuncture, which helped for a while. But one day, at the start of our morning walk, she ambled to the end of the driveway, sat down, and refused to go on despite me pulling the leash. It was the same the next day and the next, so I stopped trying. It was at that point that my wife first brought up the possibility of putting her down, but that seemed ridiculous to me because between Old Yeller and my experiences as a human doctor, I envisioned Mika struggling through the pain, fighting for her last breath to the very end. In other words, it didn’t seem right to think about letting her go because she hadn’t yet suffered enough.
As a veterinarian, my wife viewed things altogether differently. To her, putting our dog to sleep didn’t represent throwing in the towel as it seemed to me, but a compassionate way to preempt unnecessary but inevitable pain and suffering down the line. As she saw it, we owe this option to our pets as stewards of their care, especially given that animals can’t understand pain or decide for themselves just how much suffering they are willing to tolerate.
Indeed, the American Veterinary Medical Association Guidelines for the Euthanasia of Animals (2013) acknowledges that ‘there is no consensus on when it is appropriate to let [a] life go’, but notes that: ‘Euthanasia may be considered to be the right course to spare [an] animal from what is to come … if medical intervention would only prolong a terminal condition, or if current health conditions cannot be successfully mitigated.’
When we were dating in the years before we got married, my wife would often come home from a long day at work and say: ‘I killed my patient today.’ This, I came to understand, was a kind of self-reproachful statement of defeat as well as a starkly factual statement that reflected how she’d actually administered the medications that ended a dog or cat’s life that day, typically with tearful owners and their bawling children huddled around.
This strange admixture of guilt from failing to save a life, along with the resolve to be the agent that takes it, comes with the territory in a veterinary clinic where euthanasia is a daily occurrence. Although euthanasia literally means ‘good death’, it was totally foreign to me in my training as a physician. Human doctors might feel guilty losing a patient in the end, but that guilt is almost always tempered by the reassurance that while we might have lost the battle to cancer, nature, God or whatever, we did everything we could in the process. Being a physician means that doctors must sometimes admit defeat, but in doing so, we don’t go on to be the hand of death.
[A]s time went on, medications and acupuncture had less of an impact on Mika, and her hind legs would often give out so that she would walk only a limited distance before collapsing. She seemed to be slipping cognitively too, and one day even fell into the swimming pool while we were away at work, requiring rescue from a neighbour. In what seemed like a short amount of time, her muzzle turned fully grey, and she would often sigh heavily with a distant look in her eye. Finally, she began to lose control of her bowels, with increasingly frequent accidents around the house.
And so, discussions about euthanasia became more about ‘when’ than ‘whether’.
The difference in attitudes towards euthanasia for animals and human beings is understandable. After all, people have been killing animals without remorse for food, to avoid becoming food ourselves, and for sport long before we began domesticating animals or keeping them for companionship. Whereas traditional Judeo-Christian and Islamic teachings include strong proscriptions against murder and suicide for humans, religious doctrine questions the animal soul. And while euthanasia is used as an ethical means to preempt suffering in veterinary medicine, it’s not unusual for some owners to simply abandon their pets by the side of the road, put puppies in garbage bags, or refuse to pay for life-saving medical procedures based on both economics and expediency. No wonder the expression ‘die like a dog’ has historically referred to the most miserable of ends.
In 2009, US legislation that would have allowed physicians to be compensated by Medicare for providing voluntary counselling to patients about options for end-of-life care was defeated due to political uproar over ‘death panels’. And yet, as I discuss in the World Journal of Psychiatry in 2015, human euthanasia is being increasingly considered and sanctioned both in the US and abroad. As life-extending medical advances over the past 50 years have fuelled growing concerns about prolongation of suffering and loss of autonomy, the euthanasia movement of the 1930s has gained momentum, evolving into the modern ‘right to die’ and ‘death with dignity’ movements that challenge us to consider what constitutes a ‘good death’. Today, some form of voluntary active euthanasia – death by administration of a lethal dose of medication to avoid pain and suffering – is legal in several states in the US, as well as in Japan and parts of Europe including Belgium, Luxembourg, Switzerland and the Netherlands.
Still, if the historical divide between our attitudes towards euthanasia for humans and for animals is narrowing, the devil in the details of cultural sanctioning involves who can actually administer, or is willing to administer, the medications that end life. With existing legislation to date, the sanctioned individual – whether a physician, family member, some neutral third party, or the person seeking to end their own life themselves – varies by jurisdiction. Although ‘death with dignity’ is increasingly supported in many parts of the world, often neither doctors nor patients seeking death want to ‘push the plunger’ and take responsibility for being the hand of death. In this sense, euthanasia remains a hot-potato issue in human medicine.
Consequently, we now find ourselves debating a range of possible end-of-life care options, including passive euthanasia (withholding life-sustaining interventions including food or water), physician-assisted suicide (providing the means for a patient to end their own life), and active voluntary euthanasia (administering a lethal medication to a patient). Palliative sedation is an increasingly popular option within medicine, which involves administering medications that are intended to relieve suffering through sedation and pain control to the point of possible unconsciousness. Although death is a potential side effect, palliative sedation avoids the moral objections of suicide and euthanasia through the ethics of the so-called ‘double effect’, which argues that death is an acceptable outcome if unintended and in the primary service of relieving suffering among the terminally ill. Pushing the envelope of what it means to die a ‘good death’ for humans even further, my colleagues at the University of California, Los Angeles have been investigating the use of psychedelic drugs such as psilocybin to relieve anxiety and depressive symptoms and to find meaning at life’s end.
[A]fter hemming and hawing for weeks, my wife and I finally decided to pick a date to have Mika put down. We asked a veterinarian friend to perform the euthanasia in our home. On the agreed day, it was my wife who put off making the call until I couldn’t take it any longer, and had to prod her to do so. The vet came to our house, started an intravenous line, and filled a syringe with Euthasol as we sat on the floor by Mika’s bedside, petting her with long strokes and saying our tearful goodbyes.
When we were ready, I asked if I could push the plunger, and the vet allowed me to place my hand with hers as we did it together. I was worried that Mika might show signs of discomfort, but seconds after the medication went in, she simply took a single, long, deep breath, and then let it out slowly for the last time.
‘Good dog,’ I told her. ‘Good dog.’
It was a good death. We should be so lucky.
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