In this Oscar-nominated animated short, a young woman receives a mysterious package that contains a vinyl record. She soon realizes that she can go forward or backward in time by simply adjusting the position of the needle as the record plays on her stereo.
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.
The recent, untimely deaths of Kate Spade, reportedly from depression-related suicide, and of Anthony Bourdain, also from apparent suicide, came as a surprise to many. How could a fashion designer and businesswoman known for her whimsical creations and a chef, author and television personality who embodied a lust for life be depressed enough to end their lives? Crushing sadness can hide behind many facades.
According to a report by the US Centers for Disease Control and Prevention (CDC), suicide rates for adults in the United States are on the rise; since 1999, suicide rates in 25 states increased by more than 30%. In the US, suicide accounted for nearly 45,000 deaths in 2016.
Each person who dies by suicide leaves behind an estimated six or more “suicide survivors” — people who’ve lost someone they care about deeply and are left grieving and struggling to understand.
The grief process is always difficult. But a loss through suicide is like no other, and grieving can be especially complex and traumatic. People coping with this kind of loss often need more support than others, but may get less. Why? Survivors may be reluctant to confide that the death was self-inflicted. And when others know the circumstances of the death, they may feel uncertain about how to offer help.
What makes suicide different
The death of a loved one is never easy to experience, whether it comes without warning or after a long struggle with illness. But several circumstances set death by suicide apart and make the process of bereavement more challenging. For example:
A traumatic aftermath. Death by suicide is sudden, sometimes violent, and usually unexpected. Depending on the situation, survivors may need to deal with the police or handle press inquiries. While still in shock, they may be asked if they want to visit the death scene. Sometimes officials discourage the visit as too upsetting; other times they encourage it. “Either may be the right decision for an individual. But it can add to the trauma if people feel that they don’t have a choice,” says Jack Jordan, Ph.D., clinical psychologist in Wellesley, MA and co-author of After Suicide Loss: Coping with Your Grief.
Recurring thoughts. A suicide survivor may have recurring thoughts of the death and its circumstances, replaying over and over the loved one’s final moments or their last encounter in an effort to understand — or simply because the thoughts won’t stop coming. Some suicide survivors develop post-traumatic stress disorder (PTSD), an anxiety disorder that can become chronic if not treated. In PTSD, the trauma is involuntarily re-lived in intrusive images that can create anxiety and a tendency to avoid anything that might trigger the memory.
Stigma, shame, and isolation. There’s a powerful stigma attached to mental illness (a factor in most suicides). Many religions specifically condemn the act as a sin, so survivors may understandably be reluctant to acknowledge or disclose the circumstances of such a death. Family differences over how to publicly discuss the death can make it difficult even for survivors who want to speak openly to feel comfortable doing so. The decision to keep the suicide a secret from outsiders, children, or selected relatives can lead to isolation, confusion, and shame that may last for years or even generations. In addition, if relatives blame one another — thinking perhaps that particular actions or a failure to act may have contributed to events — that can greatly undermine a family’s ability to provide mutual support.
Mixed emotions. After a homicide, survivors can direct their anger at the perpetrator. In a suicide, the victim is the perpetrator, so there is a bewildering clash of emotions. On one hand, a person who dies by suicide may appear to be a victim of mental illness or intolerable circumstances. On the other hand, the act may seem like an assault on, or rejection of, those left behind. So the feelings of anger, rejection, and abandonment that occur after many deaths are especially intense and difficult to sort out after a suicide.
Need for reason. “What if” questions can arise after any death. What if we’d gone to a doctor sooner? What if we hadn’t let her drive to the basketball game? After a suicide, these questions may be extreme and self-punishing — unrealistically condemning the survivor for failing to predict the death or to successfully intervene. In such circumstances, survivors tend to greatly overestimate their own contributing role — and their ability to affect the outcome.
“Suicide can shatter the things you take for granted about yourself, your relationships, and your world,” says Dr. Jordan. Some survivors conduct a psychological “autopsy,” finding out as much as they can about the circumstances and factors leading to the suicide. This can help develop a narrative that makes sense.
Sometimes a person with a disabling or terminal disease chooses suicide as a way of gaining control or hastening the end. When a suicide can be understood that way, survivors may feel relieved of much of their what-if guilt. “It doesn’t mean someone didn’t love their life,” says Holly Prigerson, Ph.D., professor of psychiatry at Harvard Medical School and Director of Psycho-Oncology Research, Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute.
Support from other survivors
Suicide survivors often find individual counseling (see “Getting professional help”) and suicide support groups to be particularly helpful. There are many general grief support groups, but those focused on suicide appear to be much more valuable.
“Some people also find it helpful to be in a group with a similar kinship relationship, so parents are talking to other parents. On the other hand, it can be helpful for parents to be in a group where they hear from people who have lost a sibling — they may learn more about what it’s like for their other children,” says Dr. Jordan.
Some support groups are facilitated by mental health professionals; others by laypersons. “If you go and feel comfortable and safe — [feel] that you can open up and won’t be judged — that’s more important than whether the group is led by a professional or a layperson,” says Dr. Prigerson. Lay leaders of support groups are often themselves suicide survivors; many are trained by the American Foundation for Suicide Prevention.
For those who don’t have access to a group or feel uncomfortable meeting in person, Internet support groups are a growing resource. In a study comparing parents who made use of the Internet and those who used in-person groups, the Web users liked the unlimited time and 24-hour availability of Internet support. Survivors who were depressed or felt stigmatized by the suicide were more likely to gain help from Internet support services.
You can join a support group at any time: soon after the death, when you feel ready to be social, or even long after the suicide if you feel you could use support, perhaps around a holiday or an anniversary of the death.
Getting professional help
Suicide survivors are more likely than other bereaved people to seek the help of a mental health professional. Look for a skilled therapist who is experienced in working with grief after suicide. The therapist can support you in many ways, including these:
helping you make sense of the death and better understand any psychiatric problems the deceased may have had
treating you, if you’re experiencing PTSD
exploring unfinished issues in your relationship with the deceased
aiding you in coping with divergent reactions among family members
offering support and understanding as you go through your unique grieving process.
A friend in need
Knowing what to say or how to help someone after a death is always difficult, but don’t let fear of saying or doing the wrong thing keep you from reaching out to a suicide survivor. Just as you might after any other death, express your concern, pitch in with practical tasks, and listen to whatever the person wants to tell you. Here are some special considerations:
Stay close. Families often feel stigmatized and cut off after a suicide. If you avoid contact because you don’t know what to say or do, family members may feel blamed and isolated. Ignore your doubts and make contact. Survivors learn to forgive awkward behaviors or clumsy statements, as long as your support and compassion are evident.
Avoid hollow reassurance. It’s not comforting to hear well-meant assurances that “things will get better” or “at least he’s no longer suffering.” Instead, the bereaved may feel that you don’t want to acknowledge or hear them express their pain and grief.
Don’t ask for an explanation. Survivors often feel as though they’re being grilled: Was there a note? Did you suspect anything? The survivor may be searching for answers, but your role for the foreseeable future is simply to be supportive and listen to what they have to say about the person, the death, and their feelings.
Remember his or her life. Suicide isn’t the most important thing about the person who died. Share memories and stories; use the person’s name (“Remember when Brian taught my daughter how to ride a two-wheeler?”). If suicide has come at the end of a long struggle with mental or physical illness, be aware that the family may want to recognize the ongoing illness as the true cause of death.
Acknowledge uncertainty. Survivors are not all alike. Even if you are a suicide survivor yourself, don’t assume that another person’s feelings and needs will be the same as yours. It’s fine to say you can’t imagine what this is like or how to help. Follow the survivor’s lead when broaching sensitive topics: “Would you like to talk about what happened?” (Ask only if you’re willing to listen to the details.) Even a survivor who doesn’t want to talk will appreciate that you asked.
Help with the practical things. Offer to run errands, provide rides to appointments, or watch over children. Ask if you can help with chores such as watering the garden, walking the dog, or putting away groceries. The survivor may want you to sit quietly, or perhaps pray, with him or her. Ask directly, “What can I do to help?”
Be there for the long haul. Dr. Jordan calls our culture’s standard approach to grief the “flu model”: grief is unpleasant but is relatively short-lived. After a stay at home, the bereaved person will jump back into life. Unfortunately, that means that once survivors are back at work and able to smile or socialize again, they quickly get the message that they shouldn’t talk about their continuing grief. Even if a survivor isn’t bringing up the subject, you can ask how she or he is coping with the death and be ready to listen (or respect a wish not to talk about it). Be patient and willing to hear the same stories or concerns repeatedly. Acknowledging emotional days such as a birthday or anniversary of the death — by calling or sending a card, for example — demonstrates your support and ongoing appreciation of the loss.
“I have never died, so this entire book is a fool’s advice,” writes Sallie Tisdale at the start of her latest work, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying. However, there’s wisdom in knowing that you don’t know it all, and Tisdale’s enchanting prose searches as often as it instructs. In addition to being a writer, Tisdale is a Buddhist practitioner and teacher, a nurse, and an end-of-life educator who leads workshops on preparing for death; her depth of experience at the side of the dying is apparent throughout.
In these essays, Tisdale tells of the death of her Zen teacher, her mother, her close friend Carol, and others she has known, and asks questions many of us avoid: How do we define death? How do we manage physical pain or grief? Does our dignity depend on our health? This book, Tisdale writes, is meant to help you prepare for your own death and the deaths of those closest to you. It’s a travel guide to the end of life, a map of the territory, not a book of spiritual guidance. At its close, Tisdale even offers four appendixes for those seeking advice on the practicalities of death preparation. “My Death Plan,” “Advance Directives,” “Organ and Tissue Donation,” and “Assisted Death” prompt readers to consider their preferences for pain management, rituals and services, burial place, funerary rights, and more.
“If you die once, you will never have to die again,” Tisdale told Tricycle in February, recalling a teaching she heard when she was a young Zen student. At the time, she found the sentence perplexing. But as her practice progressed, the deep sense of release that she experienced—a “falling away of body and mind”—encouraged her to continue, and eventually led to the understanding that one can meet death as wholly as one aims to meet life. In the interview that follows, she tells Tricycle how she cultivated familiarity with her own mind while tending to her patients and loved ones, and why considering our own death just might make us happier.
—Marie Scarles, Associate Editor
Why did you feel compelled to write this book? I’ve been leading workshops and small groups about preparing for death at my Zen center for about a decade. I started to hear that people in other groups wanted to see the syllabus and material I was using. So I thought I could develop it into something that would be comprehensive and useful for people.
Preparing oneself to die is an inescapable challenge. It is also part and parcel of religious practice. I’m struck by the fact that as Buddhists we know this and yet it doesn’t come up in conversation all that often. We self-censor. We think, Oh, if you were a really good Buddhist you wouldn’t have those feelings, you’d wouldn’t have that fear, you wouldn’t be confused, you wouldn’t be struggling. You’d have it all figured out. This is very damaging to us. Our practice is about authenticity, rigorous self-examination, and honesty. If we’re honest, we’re going to admit that none of us is quite ready to die.
In the book, you write that when we’re speaking with someone who is dying, we need to avoid telling them what they should do or how they should feel. Are these “shoulds” another form of censorship? I’m going through this with a friend right now. I was with him last night, and one of the things that he’s really struggling with is his deep fear of self-extinction. I have to bite my tongue not to try to reassure him, not to try to take the fear away from him, but to let him explore it and feel it. It’s his, and his perspective on it is very different from mine. It’s not my life.
It’s so easy for us to pop in and say, “You should be feeling this,” or “Of course, you want me to do and say this.” But when we do, we’re missing the fact that nothing is more intimately the result of your whole life than how you meet death. We have to notice our urge to put our own veneer on someone else’s experience.
I’m sure I’m less uncertain and awkward than most of the people in the room, but I am still awkward and uncertain at times at that bedside: I’m not sure how to answer a question, or I’m looking for comfort with the silence, knowing there’s nothing to be done about certain things. I’m still just trying to meet the experience all the time, and stuff comes up for me, of course. It does for all of us. But it’s really myself that I’m encountering, the ways I think it should be. This is the way I want it to be for me. That fundamental egotism is still there, even at somebody else’s deathbed. You have to continually notice this fundamental egoism.
I imagine this process of getting to know your own experience—as well your nursing work—has helped you navigate encounters with death. Of course, every death is different. Yet there are remarkable similarities. We’re not that different from each other. You can really predict and expect certain things with the deaths from chronic illness. Even with sudden deaths, once the moment of death is reached, it’s the same moment. It’s something you recognize if you’ve seen it before. It’s like that line in the Theravada version of the Mahapari-nirvana Sutra where Ananda says that the hair on the back of his neck stood up when the Buddha died. There’s something we recognize there that goes really deep.
I also want to say that I had a lot of fun writing this book. I feel a lot of joy in the face of the preciousness of life—a kind of silly joy at times. Not only are there these rituals of crying and role change that every culture has around the deathbed, there’s also a deep worldwide culture of laughing at death, making fun of it, joking about it. I think it’s because it puts us face-to-face with the deep love that we feel for each other.
This reminds me of a 2007 study you mention in the bookthat says thinking about our death makes us happier.Yes, but they explained this happiness in a different way. They’re talking about terror management theory—the psychological belief that it is fundamental to human nature to be terrified of death and that you can’t escape the terror. Terror management theory states that you can’t not be afraid of death. I don’t believe that. I think we are all afraid of it until we know it. When we really know it, that’s what spares us from the terror. Terror management theory says that this is part of being human, and that we do a tremendous number of things to distract and protect ourselves from this fear. I think we’re healthier than that. In the Buddhist sense, we have the potential to be as healthy and whole around this as around everything else in our life.
An awareness of death comes and goes. We’re hyperaware of it at one moment, maybe when someone close to us is dying, and then it fades away again. How do we get to know death, or maintain this sense of awareness? I’m a Zen practitioner, so the language I’d use here is “the falling away of body and mind.” If we become familiar with what it means to arise and fall in every moment, if we become familiar with the emptiness of the purported self and we come to accept ourselves as a loosely cohering set of compounded things, we don’t believe in the self all the time. Of course, we constantly forget and remember this again, but over time we do become more familiar with ourselves as impermanent, and eventually we come to see the glory of that. The grace of impermanence is that we belong to everything, that we are not separated from anything, that we are not isolated. As I say in the book, we may be waves on an ocean, but we are waves that know we are waves. That’s what I mean by really getting to know death. It’s not just spending time at a bedside, being with people who are facing death, getting to know your reactions to it. In a practical sense, this can be very helpful. But the most effective thing in getting to know death isn’t being with dying people, but sensing myself as being a continually dying person.
There’s a saying I’ve been told as long as I’ve been practicing: “If you die once, you will never have to die again.” I heard that when I was very young, and I didn’t know what it meant, but I do now. When I first experienced the falling away of body and mind, even a tiny bit, it was as though I had been a tightly wound spring, and I thought, I’m going to continue to unwind forever. There was such relief and relaxation and peace in the realization that this constriction would keep letting go. I could just look forward to more and more relaxation. Throughout my life I have continued to feel that spring unwind, a little bit at a time. We have as many lifetimes as we need to get there. [Laughs.]
Still, I will feel afraid when it’s my time, when I get that bad diagnosis and I’m on that doctor’s table. I’m sure there will be resistance and fear. So let’s admit it: The resistance is there. The denial arises. Admit that. But there will also be curiosity and wonder at the point of facing death, just because I have looked at it enough.
Your experience as both a dharma teacher and a nurse comes through in the book: you’re writing from the perspective of someone who has witnessed countless deaths. Yes, but that doesn’t mean that I don’t feel uncertainty and awkwardness as well. We bring our whole self there. It’s significantly easier for me to do this with a client than a friend.
When my mother was dying, my siblings looked to me like, Well, you can take care of her. And I had to say, No. I’m the daughter here. I have to be the daughter here. Sometimes, no matter how much practical experience you have, you have to bow to the fact that this is not your role this time. You need to be the daughter or the mother or the friend. Most of us will lose some friends, our parents, our siblings—but not that often. So it’s always okay to be who we are in these moments. It’s always okay to have the weaknesses and the confusion and the questions that we have. It’s always all right to just say, “I don’t know. I’m not sure. I’m scared. I’m worried. I’m afraid of this. I’m not sure what to do next.” It’s okay for all of those feelings to be there. We really will trip ourselves up if we think we have to have it all together.
I was thinking about this last night while sitting at the bedside of my friend, someone I’ve known for 40 years. He’s really scared to die. We learn in our practice to deal with our own suffering. We learn to recognize other people’s suffering, and we learn to see the sources of suffering. But it’s really hard to learn that you can’t take somebody’s suffering away from them. It’s important that we remember the bodhisattva Guanyin, she who hears the cries of the world. She’s the witness; she’s not fixing everything all the time—she is just seeing it. There’s so much we can do for each other, but we can’t do it all. It’s not possible to entirely comfort and console another person. They have—we have—to feel pain. It is part of this life.
Caretakers’ Dos and Don’ts
An excerpt from Advice for Future Corpses (and Those Who Love Them)
If you are dying, you can say anything you want. You can say it when you want, and to whom you want. And you don’t have to say anything at all. Most of what I offer here is for the visitor, the companion, the helper. You have to follow some rules.
Think about how you explain ordinary information: the washing machine is on the fritz, we’re out of milk, I got a parking ticket today. Then think about how you communicate more urgent news: I wrecked the car. The power’s out. It’s different. Consider how you react in an argument. That’s different, too. Do you shut down, stop thinking? Do you start to cry or yell or leave the room? We all have a pattern for difficult conversations. If you are going to spend time with a dying person, know how you handle emotional scenes. What scares you? What makes it easier? Make a list. Practice!
Listening isn’t that complicated. It’s hard, but it’s not complicated. Few of us communicate really well. We think explaining ourselves is key, but listening is the most important part. Half the energy of caring for a dying person is listening, really listening. We are driven to think of ourselves first, and spend half the time appearing to listen while we prepare what we are going to say when it is our turn to speak. So: Listen. Say: This sounds very difficult. Say: I can tell how much thinking you’ve done about this matter. Say: Um-hmm. Tell me more. Keep bringing your mind back to the present moment when you stray. Invite detail. Ask questions and make it clear that you want to know. Anxiety makes it difficult to remember information, so repeat yourself if necessary. Speak in a calm and unhurried way. Reflect what you’ve heard, because you might have heard wrong: It sounds like you are saying you are afraid. Clarify, because you might have heard wrong: Let me make sure I understand. I think you are saying . . . If you can do these things, you are almost there. Be calm. Be nonjudgmental. Repeat.
If you are spending time with a person who is dying, you become a protector. 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.
You will become a gatekeeper. Everyone needs a gatekeeper! Be the one who can say with a smile, Goodbye, Aunt Lucille. The one who can reach out a hand to the visitor and say, Time to go. We’ll call when we’re ready for another visit! while walking to the door.
Visitors come in many forms. Lots of friends will just drop in for a cup of tea and a few innings of the baseball game and take the garbage out when they go. Hurray for those friends. But you may also meet what the writer Glennon Doyle Melton calls the Fixer. This is the person who is certain that my situation is a question and she knows the answer. The Fixer is on the edge of her seat, ready with the solution. Melton went through a difficult breakup, and so she also knows the Comparer: the visitor who only appears to listen, who is just waiting for the chance to explain how his experience, or his nephew’s experience, or his aunt’s boyfriend’s cousin’s experience, compares to yours. Sooner or later a visitor arrives with what I think of as one-downmanship: the person with the sad face who spends their entire visit explaining why their troubles are worse than yours.
Set boundaries—for visitors, but also for yourself. Start with setting the boundaries for the visit, and do this every time. Say, I can stay for an hour, or I’ll be here until dinner, when Mary arrives. Before you leave, tell the person when you will be back. This removes the uncertainty, the unbounded edges that can make for a stressful conversation. A boundary gives both of you a space in which to be together. If you’re going to be coming regularly, you might offer a frank contract: when you will be there, for how long, to do what. If you can’t stand daytime television, can you watch Days of Our Lives anyway? If you don’t like cigarettes, can you sit easily with someone who smokes? Don’t say: I told you to quit smoking.
There are lots of ways to help besides making soup and sweeping the floor. (Those are often good things to do.) You can help people write letters or arrange a meeting. Offer to buy groceries or do the laundry, drive to an appointment or organize the bills. Offer only what you can deliver: I will stay with you through the night, or I will mail these letters for you. Be specific. (Then do what you say you will do. Not to put too fine a point on it, but you only get one shot at this.) Write all these things down and put it on the refrigerator. Your friend has enough to remember without keeping track of the calendar. Don’t say: Be sure to keep me posted.
Ask permission for everything. Be aware that you have the power here. (Be willing to discuss this fact.) Ask permission until your friend says, Quit asking for permission. Ask if a person wants to talk before you plunge in with the news of the day. Would they rather listen to music or play checkers or watch The Walking Dead? Do they want to take a shower? Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat? Always ask for permission, but give permission, too. Permission to be sad, to be angry, to be sleepy or bored. To be something other than dying. To die.
Ask about privacy and confidentiality, favorite foods, how they want the room to be set up. Lights up, or down? Door open or closed? Music on or off? Agree on a signal for ending the visit. Know when to leave. Know when to be quiet.
You have to be honest with the dying person, but above all with yourself. There is nothing else worth doing here. Honesty is generosity, because when you are honest, you offer what you can truly give. Be honest about your own emotional state, without burdening the sick person. Resist your own impulses, your need for consolation, your wish for power, your urge for denial.
Know your limits. You have to grieve, and that means you have to go away sometimes. If you are hungry or need a rest, take care of yourself. If you’re anxious or worried, admit it. (Just don’t ask your friend to fix your feeling.) There’s a tricky balance between keeping your feelings in check and being authentic. You may try to downplay things, especially tears and anger, but you don’t have to hide them completely. On the other hand, you may be surprised by jealousy, irritation, and loneliness, and these are really yours to sort out elsewhere. Don’t say: Why didn’t you call me first? Why did you tell her before me?
Knowing these things is half the battle. The other half is watching and working with what happens.
A person who is ill may try to trigger your reactions. People may be testing whether you can handle talking about a difficult subject. Good listening goes a long way toward showing acceptance, and so does an open posture. Don’t stand over a person in bed or bustle around when they’re talking. Settle down, relax, keep your posture open, and try not to touch or soothe the difficulties away. You might feel a powerful urge to soothe painful feelings, to cover up. Don’t change the subject.
If there is a topic you absolutely cannot discuss, make that clear. Can you be still while a person cries? Don’t put a person in the difficult position of upsetting his caregiver. Don’t hide all your feelings under a bushel, but be a grown-up and manage your grown-up pain.
A person overwhelmed with illness may displace difficult feelings and shift attention away from the problem she is afraid to face. The big problem at hand. The ego is often about seven years old and prone to distractions when uncomfortable, like a kid who spills his milk just as you ask whether his chores are done. Adaptation takes many forms. Some people rationalize destructive behavior, ignore consequences. Some people will regress under stress, reverting to behaviors they used when they were much younger, refusing to take responsibility and looking for another person to act as the adult. There’s nothing inherently wrong with that; we all like someone else to be the adult sometimes. Just notice if it’s a pattern, and be careful. Watch the urge to become parental under stress, to take charge and try to manage the situation. Taking charge protects you from having to feel hopeless, but may not be what the person really needs.
Balance affect. If the person is hurried and talkative, you can speak slowly and listen. If they are withdrawn, you can start by doing the talking. If they are pacing, sit still. Notice incongruence. Is the person smiling while they tell a sad story? Are they clenching their fists while they say everything is fine? Dying tends to create incongruent feelings. You don’t have to challenge this. The person is working things out. Just be congruent in yourself. Don’t be afraid to cry a little sometimes; that’s congruent.
One way I might manage the hardest parts of being sick is to intellectualize my feelings. Perhaps I talk about the kind and brand of walker I want and ask you to check on prices. But I never say how it feels to need a walker (or a burial shroud). I may complain about how long it takes you to bring me lunch because I don’t want you to notice that I need help getting up from my chair. I don’t want to notice it, either. If I get angry at you for being late, I can briefly forget how it feels to need your help in the first place. Humans deflect when things hurt, and we are quick to project our struggles onto other people, using another as a kind of surrogate. I may talk about how Uncle Mario needs to use a walker now. I’m not just distracting you; I’m also testing you. I’m learning important information about how you feel about people who need walkers.
What not to say: Don’t talk like that. Let’s just talk about something happy. One of the most common ways we defend ourselves is by denial. We may simply deny what we’ve been told is true. Things not to say: My mother’s biopsy was negative. You look fine. Are you sure you’re sick? Denial is normal, but notice your own. A dying person may deny the truth for a long time. How often do we deny another’s denial? How often do we try to drag a person to the place where we think they should be, instead of meeting a person where he or she is? This is where open-ended responses help so much. Reflect on what you hear. Ask for more detail. Ask for what it means. Listen.
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.”
Have you ever thought about how you’d like your funeral to be? Or what dying might feel like? Or what should happen to your body?
If you’re anything like the majority of people living in the Western world, chances are you haven’t given much thought to how you’d like to die. Or even spoken much about the topic in general.
Although we all know it’s going to happen, dying remains one of those things people still don’t want to discuss. And in a culture that embraces and celebrates youth, very few in the West want to face up to their mortality or risk being seen as macabre or morbid.
But with an ageing population and the UK’s NHS struggling to cope with demand, people need to start planning for their own end of life care earlier. Perhaps, then, the UK should follow Australia’s thinking and start getting dying on the agenda early – by teaching kids about it in school.
The Australian Medical Association Queensland has proposed that death should be built into the school curriculum. If this proposal is accepted, Australia will lead many developed Western nations in tackling the public discomfort and avoidance of death.
In practical terms, schools could easily build death into existing subjects. In biology, for example, the processes of death and dying could be covered from a practical perspective, while in citizenship, students could learn how to draw up a will and look at the legal and ethical debates over what mental and physical capacity means.
A variety of organisations and lobbying groups are already making headway in getting people to talk more openly about death. The death cafe movement has encouraged people to talk about death and dying over tea and cake in 56 countries. The Order of the Good Death, led by mortician, author and founder Caitlin Doughty, takes an online approach to promote the idea of making death part of life. Meanwhile, the annual UK Dying Matters Awareness Week provides a programme of events supporting the vision that dying does matter and needs to be talked about.
Such movements are making important inroads into challenging the public wisdom that “death is taboo”. But there remains a significant proportion of people who do not want to talk about death. It is this cultural trend that embodies what death scholars refer to as “death denial”.
A key problem with death denial is that individual wishes for end of life care are not considered until late on. And the result is that people struggle to achieve a good death, and often don’t have their wishes considered.
Educating the young about death and dying, then, offers the opportunity to challenge the unwanted consequences of not talking – which, according to the Dying Matters coalition, includes the family not knowing how to best help or support their dying loved one, the dying person feeling frightened and distressed, and the issue of people dying without a will – leaving the family unsure about funeral wishes.
New efforts need to be made to demystify death and dying. And there’s more to it than simply getting people to talk about death – although this is a positive step. Directly educating the younger generation is an important shift towards empowering people to understand the interplay between law, medicine and ethical issues surrounding death and dying.
By creating transparency through education, death, dying and the disposal of the dead can all become part of the everyday. And by normalising death within schools, it may well be that students can help their families to fear less and make more informed decisions about the end of their lives.
You’ve heard it countless times: Life is short, so appreciate each moment.
People with life-limiting diagnoses know this intimately: When they come to terms with their mortality, their priorities often change, and they may try to squeeze as much substance into their lives as they can. This often involves trying to resolve long-standing problems with loved ones and strengthening important relationships.
Very few healthy people live this way, though. We get caught up in the details of our busy lives and often forget to put things in perspective, believing that we’ll have time to sort everything out. But end-of-life experts believe that everyone should adopt some of the attitudes and values that dying patients embrace.
“It’s easy to put something off into the future,” says John Mastrojohn III, chief operating officer of the National Hospice and Palliative Care Organization. “For some, that future may not be as long as we’d like. Having meaningful conversations, or doing other things that bring joy, can have a profound impact on how we feel about ourselves and others.”
You may be inclined to delay these types of conversations if you don’t sense an imminent need. But they can positively impact your relationships and help you realize what’s most important.
“Those of us who work with people who are seriously ill have found that [saying] ‘Please forgive me,’ ‘I forgive you,’ ‘Thank you’ and ‘I love you’ — that almost always has value to people, whether relationships are fractured or strong,” says Dr. Ira Byock, a palliative care physician in Torrance, Calif., and author of The Four Things That Matter Most.
End-of-life experts believe that the following advice — which they often share with patients who are in the final weeks or months of their lives — is surprisingly well-suited for active, healthy people, too:
1. Adjust Your Priorities
You may take your friends and relatives for granted because you’re focused on a work project, your upcoming kitchen renovation or the number of “likes” that you received on a Facebook post. But it’s important to periodically stop to appreciate the meaningful relationships in your life.
“The things that matter most to people aren’t things; they’re other people,” Byock says. “Ask somebody who’s facing cancer or chemotherapy for the third or fourth time what matters, and the answer they give will always include the names of people they love.”
2. Make Time for Loved Ones
Your schedule may make it difficult to see friends or relatives as often as you’d like, but you can change that. Giving priority to your most important relationships should make you feel less frazzled and more grounded.
“There is not a single seriously ill patient I know that worries about all the current items populating their calendar when they receive a life-threatening diagnosis — their thoughts go immediately to their time with those they love,” says Dr. Cory Ingram, a palliative-care physician at the Mayo Clinic in Rochester, Minn. “There are some things in life to postpone; however, relationships with those who matter aren’t on that list.”
3. Have Meaningful Conversations
Most people don’t apologize, seek forgiveness, offer gratitude or extend feelings of love to their closest friends and family members on a regular basis. They may believe that their feelings are tacitly understood by their loved ones. Or they may feel that the topics are too significant to broach in everyday conversation, so they keep their feelings inside.
But putting words to your feelings can boost your relationships significantly. It’s particularly important for parents who may not have shared their thoughts with their children — especially adult children.
“It’s worth taking the time to sit with each of your children and let them know how proud you are to be their mom or dad,” Byock says. “[Or tell them] ‘I love you more than I can say.’ Who else on this planet can give that gift in your voice? I’ve counseled many children who were crying after the death of a parent, who never heard words of that nature. Some of those children were in their 60s.”
4. Don’t Hesitate to Share Deep Feelings
In many families, people don’t discuss emotions unless there’s a crisis, but you can work to change that. Consider how you’d feel if you or a loved one died suddenly, before you had the chance to share what was in your heart. Revealing your feelings can help to alleviate that sentiment and bring you closer.
“Some people say, ‘My kids know that I love them,’” Byock says. “’I say, ‘Great! Then it will be easy for you to say it.’ No excuses and no mumbling.”
It can be particularly difficult for some men to talk about their feelings, especially if they’ve maintained a gruff, stoic reputation. But once they open up, their words can deeply move the people in their lives.
“Most of them aren’t so tough — they just learned to cloak their feelings in a hard shell,” Byock says. “We guys aren’t as verbal about our emotions. We have emotions. We just don’t talk about them. Talking about this stuff can be very impactful.”
5. Prepare for the Worst
Many terminally ill people create advance directives, which are documents that name a loved one to make medical decisions on their behalf in case they are ever unable to speak for themselves.
But two-thirds of healthy people don’t have advance directives, perhaps because it requires them to consider their own mortality. Advance directives are invaluable for everyone, however, since we never know what may happen.
“It’s a way of taking care of your family,” Byock says. “I have an advance directive. Not because I have a serious illness, but because I have a family. I’m a dad, and if I’m in a car accident or have a stroke, if my wife and daughters would struggle, I can give one of them clear authority to speak for me, with no ambiguity. I can give them some sense of what I think I want, to lift a little bit off their shoulders.”
After you designate someone to speak on your behalf, let them know.
“Completing the document is only part of the requirement,” Ingram says. “The real work of completing an advance directive is having a conversation about your values, preferences and priorities for health care with those you named.”