Angela and Pete had the perfect marriage but it all ended when he tragically died at the age of 34. Angela was overwhelmed with grief when her late husband’s best friend stepped up to play a major role in her life.
I was married to Pete for only two years and I was madly in love with him. We’d only been dating for three months when we got engaged, it was a whirlwind romance of the most romantic kind, better than anything I could imagine. He was the kindest, sweetest man and everybody adored him.
Then tragedy struck and he was involved in a motorbike accident and killed instantly. I was at work when I heard the news and to this day, I still can’t believe he has gone. My life fell apart all around me. When I say everyone was devastated, I’m not exaggerating; friends, family, workmates, casual acquaintances, there was an outpouring of grief.
But I believe nobody was more impacted than me. For a long time I struggled to get out of bed, I couldn’t eat, couldn’t sleep, my grief took over my life. The only person who really stuck by me in terms of helping me get over the initial first stages of grief was his best friend, Andrew, who became my rock.
He was also grieving the loss of Pete but he would come over first thing in the morning, make sure I got up and had breakfast, he helped me and his family prepare for the funeral, and after the funeral when so many people went back to their own lives and I was pretty much forgotten, Andrew was by my side at all times.
So it was no great surprise that after leaning on each other so heavily in those painful months after Pete’s death that Andrew and I got closer and closer, eventually falling in love. We waited for a year before we let everybody know that we were now a couple and perhaps that was too soon because I was shocked at the reaction of people that I thought were friends.
Most of all I was shocked by the reaction of Pete’s family who were horrified that Andrew and I were together. Only Pete’s sister was accepting of us, she said she was pleased to see us both smiling again and that we both deserve happiness after having Pete ripped out of our lives in such a shocking way. Pete’s parents and his brother were a different story, his mum said she was ashamed of me, that Andrew and I must have been having an affair which was not true at all.
Pete’s parents made my life very difficult and because I inherited the house we’d bought shortly after we married, they objected to me living there with Andrew, which was pretty ludicrous.
Looking back, I realise they were still grieving and I became the target of their anger. But it was really upsetting that they didn’t see that what had happened in the aftermath of Pete’s death was some kind of miracle, that two people that Pete had loved, found happiness together. We’re now expecting a baby and I’m determined to reach out to my former in-laws and hope they will give this baby their blessing and instead of feeling all this anger towards me, that they finally have compassion for me.
“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.”
Terry Fulmer, Ph.D., from the John A. Hartford Foundation in New York City, and colleagues conducted a 37-item telephone survey to measure attitudes and perceptions of barriers and facilitators to advance care planning among 736 physicians (primary care specialists; pulmonology, cardiology, oncology subspecialists) regularly seeing patients aged ≥65 years.
The researchers found that 99 percent of respondents agreed that it is important to have end-of-life conversations, yet only 29 percent reported that they have received formal training for such conversations. Younger physicians and those caring for a racially and ethnically diverse population were more likely to have had training. The strongest motivating factors in having advance care planning conversations were patient values and preferences. The vast majority of respondents (95 percent) reported supporting a new Medicare fee-for-service benefit reimbursing advance care planning. Time was the biggest barrier reported to advance care planning, as well as not wanting a patient to give up hope and feeling uncomfortable.
“Given the gap between what people want at the end of life and the care they receive, we need to build on available training tools and embed them systematically into practice,” the authors write. “Addressing clinician barriers to advance care planning to meet the needs of their older patients and families requires the integration of existing, proven tools into a three-pronged strategy that includes education and training, formal systems, and reimbursement for these critical conversations.”
Cinnamon, Mary Kunkel’s little white terrier — like a surprising number of adorable dogs these days — has her own Facebook page. “Squirrel Chasing Inc” is listed as her occupation.
And on Feb. 28, Cinnamon’s page was exuberant.
“One year ago today, I had a grapefruit-sized tumor removed from my liver and a recent ultrasound was clear,” Cinnamon’s page said. “Celebrating!”
The celebration didn’t last. Two months later, the Kunkels had to make the heart-wrenching decision to euthanize Cinnamon. The loss was devastating.
“If I had talked to you a few days after she died, I wouldn’t have been able to do it without breaking down,” Kunkel says.
But now more than ever, numerous resources have cropped up to assist pet owners left reeling from their loss. There are entire hotlines, online support groups, trained veterinarians and therapists dedicated to helping bereaved pet owners who are struggling with grief.
At Washington State University, veterinary students get specific training for how to console grieving patients. Charlie Powell, spokesman for the Washington State University College of Veterinary Medicine, says that veterinary students staff a hotline that those mourning a lost pet can call.
“The bond between humans and animals has become greater over time,” Powell says. At one time, we saw pets as a tool — a horse to pull a cart, a dog to hunt with, a cat to catch mice. Today, they’re our best friends.
“We’ve had a few people threaten suicide over the loss of their animal,” Powell continues, “It’s very common for people to lock themselves in their exam room after euthanasia and grieve with their pets for hours at a time.”
One big message that the pet-loss hotline assures callers: It’s natural to be heartbroken.
“There’s nothing wrong with grieving,” Powell says. “It’s perfectly OK for the big burly 300-pound cop whose canine companion has died to bawl his eyes out and miss work.”
In Spokane, Bob Brandkamp used to have a professional therapy practice focused entirely on helping people through the grief of a loss of a pet. After his license expired, he stopped charging money for it, but still meets with people to help them through the process.
“Grief is grief,” Brandkamp says. “You go through the same stages if you lose a human that you know.”
He assures people they needn’t feel guilty about their pet’s death.
“It’s nothing that they’ve done,” he says. “They’ve done everything within their power to give them the most amount of care.”
For Cinnamon’s owner Kunkel, a crucial part of the healing process was helped along by the veterinarian who euthanized the dog. Kunkel didn’t bring Cinnamon to a veterinary clinic. She called up Spokane veterinarian Lacey Rasmussen and asked her to come to the Kunkels’ house.
In her last moments, Kunkel says, “Cinnamon got to be at home and lay in her favorite spot.”
Veterinary clinics or hospitals can be stressful places for pets, Rasmussen says. So she drives out to the place of a pet owner’s choosing, conducting the euthanizations in living rooms, bathrooms, bedrooms and backyards.
The pets, she says, “fall asleep like they’ve fallen asleep a hundred times before.” It’s a peaceful moment, and a chance for the whole family to say goodbye to their pet. One kid, she remembers, played a song for his dog over his Bluetooth speakers as the dog was falling asleep.
Sometimes, Rasmussen will take a piece of soft clay and press pets’ paws into it, to create a permanent momento.
“We can leave something with them,” Rasmussen says. “It’s hard when you take the pet away and they’re left with the empty spot.”
Similarly, Family Pet Memorial in Spokane offers ornate pet urns, necklaces and keychains that a cremated pet’s ashes can be placed in.
Kunkel says that Rasmussen’s presence was helpful. But the loss, months later, still lingers.
“I still have a hard time looking at pictures,” Kunkel says. “When Cinnamon died, there was this big void. We have a cat. The cat tries, but it’s not the same.”
When Beth Wood’s cancer returned in 2014 after 20 years of remission, she made an instant choice: no chemotherapy, radiation, or other life-altering treatments that could only stave off the inevitable.She told her husband so much in the same breath as informing him the cancer was back, after what was supposed to be a routine visit to the doctor.
“She made a decision to say, ‘I’m not going back through that again. I want quality of life, not quantity,’ ” says her husband, David Wood, of Tennessee. “And we were given almost 3 more years.”
They traveled the country, spent a final Christmas with the children and grandchildren, and when she died at the age of 65 on Dec. 29, 2016, it was peaceful, at home, with Beth secure in her faith she was going to a better place. It was, says her widower, a “good death.”
“I thought a lot about those two words. I think to understand death, you have to understand the life of the person. For her, she was not scared of death,” he says.
It’s a concept more Americans, from the elderly to the terminally ill to the doctors who care for them, are embracing. Eight states have passed laws allowing doctor-assisted suicide, although a judge recently overturned California’s 3-year-old law. Conversations about death, once taboo, are now held around the world at so-called Death Cafes. Before former first lady Barbara Bush died in April, she received support on social media when she decided to forgo further medical treatments.
After all, at no point in history have people lived as well as Americans today. So, more people are asking: Why shouldn’t we focus on the quality of our death as well?
There were no more bike rides with her husband, no more trips to the mountains, no more working in her garden, no more doing anything without an oxygen tank. So when Colorado voters approved doctor-assisted suicide in 2016, she was determined to use it. But because of misunderstandings or a reluctance to act under the new law, they had a hard time finding a doctor willing to act on it.
“What I came up against was a lot of ignorance. Our family doctor said it was going to take court orders and years before we could opt for that,” says her husband, Herb Myers.
After the couple pleaded for help through local media, a doctor got in touch and made a house call, agreeing that Kathy met the criteria under the new law: a prognosis of less than 6 months to live and sound mental capacity. A second doctor confirmed, as required by the law, and on March 12, 2017, Herb emptied 100 capsules of Seconal into a glass of Gatorade.
They held hands as she drifted into unconsciousness. A short time later, a hospice nurse confirmed she had no vital signs. It was, Herb said, “very gentle and very quick.” She would’ve been 63 the next day.
In the first year of Colorado’s law, 69 people were prescribed aid-in-dying drugs by 37 different doctors, and 78% of them were able to die at home, according to the Colorado Department of Public Health and Environment.
Nationwide, the movement has come a long way since Jack Kevorkian was sent to prison in 1999 for assisting in patient suicides. Oregon in 1994 became the first state to pass an aid-in-dying law, which has been used more than 1,000 times. In that state, Catholic groups and other conservatives remain opposed, although they are not actively fighting the law.
Sam DeWitt is the Colorado access campaign member for Compassion and Choices, a Denver-based nonprofit that advocates for such legislation around the country. The organization and its staff and volunteers have worked to educate doctors about the new law. They find the most opposition in rural areas and at medical facilities with religious affiliations or out-of-state ownership. Medical facilities can opt out of the law, prohibiting their pharmacies from filling such prescriptions or such deaths occurring on the premises, but they can’t forbid doctors from taking part.
“It really is a two-pronged approach to getting acceptance. We need the patients to know their rights and to be willing to have a hard conversation with their doctor, but we also need to educate the doctors … so the patients feel comfortable discussing it and the doctors feel comfortable prescribing or referring them to someone who will prescribe it,” DeWitt says.
After Kathy Myers’ story made headlines, Herb Myers’ phone rang constantly with people asking for help finding a doctor. Those calls don’t come anymore as the process in Colorado has gained more acceptance. And while he misses his wife of 38 years, he has no regrets.
“Anything else we did would have just prolonged her life and her suffering. I think it was the right thing to do,” he says. “I think everybody should have the right to go the way they want.”
Talking About Death
Sarah Farr is an end-of-life doula in the Washington, D.C., area. While doulas are better known for providing help for births, Farr hosts regular meetings known as “Death Cafes” for people to discuss this once taboo topic. Other end-of-life doulas work one-on-one with people who are dying, helping them memorialize their lives and plan their deaths.
“I think in America, we live in a very youth-centered culture, a very kind of anti-aging culture. There’s a lot of denial of death. We don’t usually see people die in our homes anymore,” Farr says. Becoming and end-of-life doula has become popular, with 18 training sessions being held around the country in 2018 alone, according to the International End of Life Doula Association.
According to Deathcafe.com, on any given day there could be half a dozen such meetings around the country. Farr put out chairs for 15 at the last gathering she hosted; 50 people showed up. Discussions run the gamut of death-related concepts, and attendees range from young people to the elderly. Most have experienced a death, and Farr sees them looking for some control over what is essentially uncontrollable: their own deaths.
“A lot of people want to maybe share stories of a death they witnessed. People say, ‘If I could have a say in it, this is how I’d want to die,’ ” she says.
“Choosing [the] day and time of our deaths; it’s just something we don’t have control over. But that doesn’t mean we can’t plan for it if it was to happen, in terms of using hospice care, dying in a hospital versus dying at home, exploring different things you can do with your body after you die, discussing home funerals.”
Of course, a “good death” could be something different for each person. Emily Meier, PhD, a clinical psychologist at UC San Diego Health, recently studied research from around the world on death and identified 11 core themes for a good death. Among these were a lack of pain, religious and emotional well-being, a feeling of life completion, dignity, closeness of family, and quality of life. Being able to die at home is also a strong desire.
Meier said a “good death” is different for each person, but talking about it in advance is the best way to make it happen. No matter the age, she encourages people to prepare advance directives, wills, and other end-of-life documents and share their wishes with loved ones.
“If the conversations are ongoing, and even when you’re healthy, if you have conversations about, ‘What’s most important to me at this point in my life?’ a lot of those things are going to stay the same at the end of life,” Meier says. “The more we talk about it earlier, the less scary it becomes because it’s very challenging to have those conversations in the last moments and trying to scramble together to make sure people are having, so to speak, a good death.”
The Hospice Alternative
Most people think of hospice as a place people go to die. At Alive Hospice in Nashville, it’s where they go to live as well as possible until they die.
Chief medical officer Robert Berkompas, MD, said the nonprofit hospice has only 55 beds but treats 4,000 patients a year with a prognosis of 6 months or less to live. Most of the care is done at home by a team of nurses, doctors, counselors, and others who work in a variety of health care fields.
“We actually ask them: What are their expectations? What are their desires? It’s fairly common they don’t want to suffer physically, with pain and nausea and swelling, so we address all that,” Berkompas says.
But what if they only want to stay alive long enough for an upcoming wedding? What if their treatment plan has side effects that make their final days unbearable?
“We let the patient direct as much of their perception of what a good death would be and work with that,” he says. “If we can give them a great deal of control within the hospice environment, I hope we’re giving them the best of both worlds.”
As a doctor trained to always fight illness, it required a change of philosophy. Berkompas works with other doctors to help them get away from the treat-at-all-costs approach.
“When we say, ‘I really don’t have any more treatment for that illness that is effective or promising,’ I can say, ‘But I still have a treatment for you.’ It’s going to be helping you through this process of dying, and hopefully it will be a good death and not spending your final days in an ICU or a hospital.”
For David Wood, whose wife declined aggressive treatment for her terminal cancer, Alive Hospice made all the difference in making her final months bearable. Nurses visited the home every other week, giving her medication to deal with the pain. And when she couldn’t get out of bed on her own, a nurse came. If he had questions at 2 a.m., he called and someone from the hospice answered. It gave him the confidence to keep her in the house and be her caregiver until the end.
It was the most intimate time in their 43 years of marriage.
“She wanted me to live again, to love again, to play again,” said David, who has since remarried.
“She was comfortable. She told me, ‘David, I am not scared about where I’m going because I know who I’m going to.’ ”
“Hospice just gave me and her the confidence to have a good death. To me, it’s to make the transition from this world to the next.”
Defibrillators implanted in the body to kickstart the heart can be lifesaving for some people, but as patients age they may face difficult conversations about when to replace or deactivate the devices.
Conversations about end-of-life care, in particular, can drive a wedge between patients and doctors and create difficult decisions for families, an international team of cardiologists writes in the American Journal of Medicine.
“The standard consent process does not fully inform patients receiving (the device) about all the downstream implications,” said co-author Dr. Arnold Eiser, an adjunct fellow at the Center for Public Health Initiatives at the University of Pennsylvania in Philadelphia and a professor of medicine at Drexel University.
Implantable cardioverter defibrillators (ICDs) differ from pacemakers, which control abnormal heart rhythms. Pacemakers prompt the heart to beat at a normal rate through electrical pulses, whereas ICDs monitor heart rhythms and shock the heart to prevent sudden cardiac arrest.
Older patients may face a difficult choice of when to stop using an ICD, especially if shocks become painful or it continues life longer than desired, said Eiser.
“Downstream decisions include whether the device no longer serves the patient’s best interests,” he told Reuters Health by email. “We believe a well-informed patient is an important aspect of ethical medical practice.”
The informed consent process could prompt this conversation, the study authors note. When patients agree to surgery for a device, they should be aware of the benefits and risks, and the information should be presented in a way that families can easily understand. Current consent forms tend to concentrate on short-term risks and benefits rather than broader device-related issues that may emerge later in life, the authors write.
By talking about advance care planning and next-of-kin choices regarding heart care and treatment options, doctors can document what a patient’s wishes are before facing a clinical crisis at the end of life. Regular conversations during check-ups would help as well.
“It will be better to prepare all parties for the decisions that come into play as the patient’s medical condition changes,” Eiser said. “It is an unusually complex decision, but it’s not always presented in that way.”
The decision-making process should be clarified as well, the authors urge. Older patients often listen to advice from authority figures such as their doctors. This may lead to a bias toward implantation.
Instead, ICD decisions should include the patient’s multifaceted health conditions and the future effects on wellbeing, prognosis and end-of-life, the authors write. The patient’s primary care physician and cardiologist should be included in conversations with the patient and family.
“We have to have an ongoing discussion with these patients about the possibility of deactivation,” said Dr. Annika Kinch-Westerdahl of Danderyds Hospital in Stockholm, Sweden, who wasn’t involved in the essay.
Kinch-Westerdahl and colleagues have studied the high risk of painful shocks ICD patients may feel near the end-of-life. They’ve also researched what cardiology, internal medicine and geriatric specialists understand about ICDs. Although cardiologists were well-versed in the risks and benefits, most internal medicine and geriatric doctors needed more training.
“We need to support our patients in their choices throughout their lifespans, not only at a point when they have to accept a new treatment – but also when it is time to terminate an existing treatment,” she told Reuters Health by email.
To maintain communication with ICD patients and their families, primary and cardiac care teams should appoint a doctor to stay in touch and regularly check on the patient’s decisions. Systems should be in place in primary care and specialist offices to make sure staff know how to manage ICD devices, talk about them, and reprogram or deactivate them when needed, the authors write.
“It’s important that patients are aware that turning it off is an option, especially as their goals of care shift to the end-of-life,” said Dr. Rachel Lampert of the Yale School of Medicine in New Haven, Connecticut, who wasn’t involved in the paper.
“The important question is how to improve communication between patients and their physicians,” she told Reuters Health by phone. “We all need to feel comfortable talking about it.”
A female dolphin may carry its deceased calf around for days, until the body is in such a state of decomposition that only the head or part of the body remains. New research published in the journal Zoology suggests that this behaviour is evidence that dolphins grieve for their dead.
The scientific discipline known as comparative thanology examines how animals respond behaviourally, physiologically and psychologically to dead members of their own species.
It is a somewhat tricky field, for the experience of grief and its expression varies widely even between the cultures of our own species, and for many cognitive scientists the jury is still out regarding whether animals have a concrete understanding of death and its finality. Still, the use of the word “grieving” in an animal context has been increasingly accepted since Jane Goodall’s landmark study of wild chimpanzees (Pan troglodytes) in 1986.
Accounts of whales and dolphins caring for or attending dead or dying individuals have been reported since the 1950s, and are observed by cetacean watchers and researchers worldwide. Lead author Giovanni Bearzi from the Dolphin Biology and Conservation Group, based in Italy, along with an international team of colleagues, decided to conduct a comprehensive literature review to investigate patterns and variation in this behaviour in cetaceans.
The team analysed 78 records reported between 1970 and 2016, and adopted a weighted comparative approach to take observation effort into account – mainly because dolphins are much more readily observed than large whale species which tend to be out in deep water and submerged for longer.
Toothed whales were much more likely than baleen whales to attend to their dead. In fact, dolphins accounted for 92.3% of 78 records, and baleen whales only 1.3%. An analysis of relative brain size across the cetaceans found that the taxa with larger relative brain sizes are more likely to interact with their dead. This finding is consistent with the concept that sociality in mammals is closely associated with encephalisation, also known as the “social brain” hypothesis.
While dolphins had many records, killer whales or orcas (Orcinas orca), which are also highly social, had surprisingly low incidences of attending the dead. More systematic reporting may reveal this behaviour in orcas and sperm whales (Physeter microcephalus), but the study suggests it may be less prevalent in species which move in fast swimming pods, or are deep divers.
So what is going on with the dolphins and their behaviour towards dead members of their species? Are they grieving? The majority of sightings were of an adult female carrying a dead calf, presumably her own. In some cases, the behaviour was observed between mothers and other females in the group.
“If one accepts that at some point cetaceans do ‘recognise’ death – an aspect that is still controversial among cetacean scientists including co-authors of this study,” says lead author Bearzi, “then three phases of post-mortem attentive behaviour may be considered.”
In the first of these phases, the female attempts to revive or protect the calf or stricken adult. There is adaptive value in this action as it may result in the recovery of the individual.
In the second, the dead individual is carried around for days, even to the point of putrefaction and the “finality of death is cognitively recognised but possibly not emotionally accepted”.
The study posits that the strong attachment between mother and calf, or between closely knit members of the group, results in “a difficulty of ‘letting go’—possibly related to grieving, or perhaps individuals failing to recognise or accept that an offspring or companion has died”.
In the final stage, the dolphin loses interest in the carcass, and returns to its normal behaviour.
Grieving behaviour in our close relatives the chimpanzees and other large-brained, highly social primates is largely accepted in the scientific world. This research suggests that even mammals evolutionarily distant from Homo sapiens may also mourn.