A Unique and Affecting Memoir Combines Grief and Mushrooms


Toward the end of Long Litt Woon’s unusual memoir, “The Way Through the Woods,” an old friend of the author chastises her for skipping his wedding to go to a mushroom fair.

Although she was one of the fair’s organizers, Long recognizes that her excuse was flimsy and slightly weird. “It had slowly dawned on me,” she writes, “that I was possibly becoming abnormally fixated on mushrooms.”

Indeed. But the larger question in this moving and unexpectedly funny book is not why Long has become obsessed with mushrooms — we have, too, by this point in the narrative — but how and why her obsession has helped her recover from the death of her husband. She makes an eloquent and persuasive case for an original thesis: that “seemingly unrelated subjects such as mushrooms and mourning can, in fact, be connected.”

Books about bereavement can be unbearably painful, like bereavement itself. Grieving is so personal, so all-consuming, so frightening; it can force you close to the edge of insanity. Immersing yourself in someone else’s anguish can feel like voyeurism, an almost obscene violation.

But Long tells the story of finding hope after despair lightly and artfully, with self-effacement and so much gentle good nature that we forgot how sad she (and we) are. Her daring decision to put mushrooms rather than herself at the center of her story speaks to the sort of person, and the sort of narrator, she is.

An anthropologist originally from Malaysia, Long met her husband, Eiolf, while visiting Oslo on a college exchange program. They lived there happily and harmoniously into their mid-50s. “The Way Through the Woods” begins when everything changed, “the day when Eiolf went to work and didn’t come home.” Long is unmoored by a death that was as instant as it was untimely. What should she do now? Should she even remain in Norway?

At a loss, she enrolls in a course called Mushrooms for Beginners, something she and Eiolf had hoped to do together. She finds herself thrust into a world of zealots for whom “talk of fungi crowds out everything else.” (She makes many “mushroom friends” throughout the book, but often has little sense of their non-mushrooming lives.) She immediately sees the humor in the subject.

The mushroom course sponsor, the Greater Oslo Fungi and Useful Plants Society, “sounded like a sister organization to the Norwegian Women’s Hygiene Association,” she writes. “To be honest, I wasn’t sure what constituted a useful plant.” Is there also a society, she wonders, for useless plants?

But “mushroom outings gave me the push I needed to get out of the house and take part in life,” she writes. She prowls the woods for hours, learning how to spot elusive mushroom colonies and to identify dozens of different varieties of mushrooms — which kinds are rare, which are tasty, which are poisonous. She is invited by seasoned enthusiasts to secret mushroom locations known only to them, spots they guard with the fierce jealousy of a squirrel with a private stash of nuts.

We learn that mushrooms considered poisonous in Finland are in some cases considered perfectly edible in France. We hear about a pioneer of 19th-century Norwegian mycology so gripped by obsession that he changed his last name to “Sopp,” which means “mushroom” in Norwegian.

We travel with Long to New York, where she takes a heady tour through Central Park with the late, legendary mycologist Gary Lincoff. They are happily picking mushrooms when a park ranger asks them what is in their basket. Lincoff tells him, reeling off the varieties in Latin.

“It is my duty to inform you that it is forbidden to pick flowers or plants in Central Park,” the ranger says amiably, bidding good-bye. “There, my job is done!”

Soon Long is so keen that she takes, and passes, the Norwegian Mycological Association’s tough exam, becoming a certified mushroom inspector. These volunteers help residents of Oslo who want to pick mushrooms, and who wish not to poison themselves by bringing home the wrong ones.

Receiving her mushroom diploma, Long feels something like euphoria. “I may have even curtsied as it was handed to me, I was so thrilled,” she says. “I think Eiolf would have been proud of me.”

Seeing Long’s capacity for wonder and even contentment in the midst of her sadness feels like seeing tiny shoots of grass peeking from the ash in a landscape stripped bare by fire. Her memoir, beautifully translated from the Norwegian by Barbara J. Haveland, intersperses the story of her mushroom education with details of her emotional journey, each informing the other. She is a fine anthropologist of both.

She describes moments of emptiness, anhedonia and emotional numbness. The moments creep along, then suddenly disappear into black holes, disregarding the rules of chronology. “Grief grinds slowly,” she writes. “It devours all the time it needs.”

We’re used to descriptions of big, convulsive, operatic heartache, but everyday loss around the death of someone you love — the thousands of little moments that are “divine in their banality” — cuts more sharply. Long thinks wistfully of the delight she and her husband used to take in sharing books. “Reading a book is like taking a walk through unknown country. It hurts to think of all the books and all the walks that Eiolf never read, never took and never got to tell me about.”

She and Eiolf loved to cook together. After he died, Long found herself sitting in front of the TV idly spooning mackerel in tomato sauce from a can, a scene that eventually gives way to a glorious chapter full of lovingly described mushroom recipes. “If it were anatomically possible, I would have said that my heart had been dislocated,” she observes. Seeing its gradual restoration to its proper place helps our hearts, too.

At its center, this book poses a familiar, awful existential question. How do you go on living when the person you loved so much — perhaps the person you loved best in the world — is gone?

Everyone must find her own answer. Long’s is as good as any.

“When forced to use my senses in different ways, I gradually ceased to observe my widowhood from the outside and slowly came to grips with my own life,” she says. “And perhaps this just shows how closely linked my two journeys have been — the involuntary excursion into the labyrinth of grief and the utterly voluntary foray into the field of mushrooms.”

Mushroom lovers, she writes, “believe that where there is life, there are mushrooms as well as hope.”

Complete Article HERE!

Death and learning to understand it

Dying is a social not a medical event. We must accept it as part of life’s narrative

“Nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful.”

By June Shannon

“How people die lives on in the memory of those who live on.” – Dame Cicely Saunders,, founder of the modern hospice movement.

Do you know what dying looks like? Do you want to know?

A lot of people are afraid of death and dying, yet like birth, it is one of life’s most natural processes. We don’t talk about it, but it happens to us all, and if we are very lucky, it occurs at the end of a long and happy life.

For many who fear death it is perhaps the fear of the unknown that is most terrifying, and it is that fear that Dr Kathryn Mannix, former palliative care physician, author and full-time campaigner for better public understanding of dying, is working to ease by encouraging us all to “narrate dying”.

Speaking to The Irish Times, Dr Mannix said that after 30 years in palliative care she found she was having the same conversations with unprepared families and terrified people with terminal illnesses, whose image of dying came only from television and films which did not reflect reality. She said people generally, had no idea what the “normal, relatively predictable and usually, fairly comfortable process dying is actually like”.

She recalled meeting the adult retired sons of a father in his late 90s who was dying and none of them knew what their father’s wishes were. She described them as “panic-stricken” when asked how or where their father wished to die. A number of the sons who were in their 70s, confessed that their father had in the past tried to share his wishes for the end of his life with his sons, but they refused to discuss it and jokingly admonished him for being morbid.

“This made me realise that we can’t keep doing this to our families,” Dr Mannix said. “This is a national public health problem. In fact, it is an international public health problem that people in parts of the world that have highly developed and sophisticated and accessible to everybody medicine, have forgotten what normal dying looks like.”

Planning for death

According to Dr Mannix, nowadays the tendency in modern health systems to call an ambulance to bring everyone who is very sick and may die, to a hospital full of technology that might just save their lives, which, she acknowledged was wonderful if it worked, meant that nobody knows what normal death looks like. “So now nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful. And actually, if they were less afraid, they would be able to sit down and have those conversations and plan better and die better,” she said.

Instead of putting off what may seem like a difficult conversation until it is too late, Dr Mannix suggested that we should all know more about dying and start planning for our own deaths while we are well. “We should all be thinking about how we would like our dying to be, where, who would be our companions,” she said.

She added that these plans can be tweaked with time and suggested that we should be having these conversations around any birthday that falls on the five times table after the age of 50.

Dr Mannix explained that like birth, which starts with labour pains and progresses through a predictable sequence of events, the process of dying also involves an anticipated sequence of events that are very similar from one person to the next, irrespective of what they are dying from.

“Just like every woman who has ever given birth to a baby feels she has had a particular unique experience, every midwife who has attended that woman has been through the same process that she always has. Because it’s the individual who makes it individual, it is not the process . . . every person who is dying is having their own unique, individual, personal family experience but those of us who are caring for them are seeing the same sequence of events time after time,” she said.

Steps of process

When Dr Mannix meets a patient who expresses a fear of being in pain or distressed when they die, she gently asks if they would like her to explain the process of dying to them and tells them that if they find it too distressing, they can ask her to stop at any time.

Nobody has ever asked Dr Mannix to stop.

She said that when people learn what really happens when we die, they don’t find it terrifying, on the contrary they see it as compelling and comforting.

“I tell somebody and then there is a long pause, usually when I dry my eyes . . . and then they say ‘That’s not what I was expecting, can you tell my wife that? Can you tell my dad that, can you tell my kids that?’ and, ‘That’s wonderful I want my family to know it will be a comfort’.”

By understanding the dying process, grieving families will take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them.

Dr Mannix explained that at the end of our lives we simply get more tired and need to sleep more.

As the illness state advances and death becomes closer, the periods of being awake get less and the periods of sleep get longer. Eventually, she said there comes a time when a patient is so deeply unconscious that they cannot be woken. When they do wake up later on, they report that they had a good sleep. Therefore, Dr Mannix said we know that being unconscious is not unpleasant for people.

She explained that when a person is unconscious, medical staff can continue to give them their regular medication to help ease the symptoms of their disease, such as breathlessness or pain, via an injection or syringe pump rather than in tablet form.

“They sleep more, they are awake less. We change the route of the medicines, but it isn’t the medicines making people sleep, it’s the illness, it’s the process of dying and at the very end of people’s lives they lapse into unconsciousness,” she said.

Unconscious state

Dr Mannix explained that this unconsciousness doesn’t feel like falling asleep and the person is not aware that it is happening.

Once the person is completely unconscious the only part of the brain that still functions is that which drives breathing which then becomes completely automatic.

She explained that at this point a person’s breathing alternates between cycles of deep and shallow breathing.

She also pointed out that in this deeply unconscious state, the dying person is not aware of their vocal cords. However, when they breathe out through their vocal cords it can make a noise and family members may fear that this is the sound of their loved one groaning or sighing in distress.

The so-called “death rattle” people hear can also be explained. This too is all part of the dying process and occurs because the dying person is so unconscious that they can no longer cough or swallow to clear normal secretions like saliva or mucus from the back of their throat.

“We would normally cough or splutter or gag if anything is touching the back of our throat because it is a reflex to preserve our lives. Once you are deeply unconscious, all of those sensations are just lost and we tolerate that . . . because you are breathing, the air is going in and out, it makes that funny clicking noise that you would normally never hear in any other circumstances because, in any other circumstances people would clear their throat,” she explained.

Dr Mannix said it was important to remind families that this was automatic breathing because when someone is deeply unconscious, they cannot feel distress.

“As time goes by the breathing gets slower, there are pauses and then eventually there will be an outbreath which doesn’t seem any different to any other out breath, but there just isn’t an inbreath afterwards. It’s as gentle as that.”

“You can’t stop death from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying.”

According to Dr Mannix, 100 years ago we would never have spoken about childbirth in public, but we would have all known about dying and she believes it is time for lay people to reclaim death and dying.

Death bed

While Dr Mannix acknowledged that GPs, community nurses and palliative care specialists would always have a role in the dying process, to help ease symptoms and ensure that the person is as comfortable as possible, she said that dying was not a medical matter but rather a social one.

Therefore, she was appealing to medicine to “give dying back to everyone”. “People will only understand what is happening around the death bed if we narrate it,” she said.

By helping grieving families understand the dying process, this will allow them to take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them, Dr Mannix said.

“You can’t stop it from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying. We can give people the knowledge that they need to be with people who are dying.”

Dr Mannix’s book With the End in Mind: Dying, Death and Wisdom in an Age of Denial was shortlisted for the 2018 Wellcome Book Prize and she is one of a number of speakers due to address the annual dotMD conference which takes place in Galway in September.

Hailed as a festival of medical curiosity and known by some as the Electric Picnic of medical conferences, dotMD is a celebration of the heart of medicine. dotMD is curated by Dr Ronan Kavanagh, consultant rheumatologist; Dr Muiris Houston, GP and medical journalist and writer; and Dr Alan Coss, consultant gastroenterologist.

The purpose of this highly popular event which, for the first time in its seven-year history is taking place outside Dublin, is to expose doctors, medical students and other healthcare professionals to the ideas taking place at the interface between medicine, the humanities and technology.

Themes included in this year’s two-day dotMD meeting in Galway on Friday, September 13th and Saturday, September 14th, include, jazz, death, art, stories and zombies.

Complete Article HERE!

The Role of Nurses When Patients Decide to End Their Lives

Some hospitals and hospices have policies that forbid nurses to be part of the process or even to discuss end-of-life options.

By Emilie Le Beau Lucchesi

When Ben Wald, 75, was dying of cancer in 2012, he wanted to use Oregon’s Death with Dignity Act to receive a prescription for a lethal medication that would end his life. His hospice nurse, Linda, was part of the discussion and provided both information and support, said his wife, Pam Wald, of Kings Valley, Ore.

His colon cancer had spread to his lungs, and his weight dropped from 180 to 118 pounds. He struggled to speak or eat.

When he was ready to end his life, the couple wanted Linda with them, but the hospice organization she worked for did not allow it, Mrs. Wald said. The organization allowed other hospice workers, such as social workers and massage therapists, to be present, but not the doctors or nurses it employed.

Without a nurse present, Mrs. Wald was going to be alone with her husband when he died. She wanted someone knowledgeable to support her through the process. She reached out to Compassion & Choices, a national advocacy group for aid in dying. The group paired her with two volunteers, one of whom was a retired intensive care nurse.

“You watch your husband die and you hear that change in breathing,” Mrs. Wald said. “Jane, the I.C.U. nurse, she said, ‘The breathing changes. You’re doing fine, Pam. Keep holding his hands.’”

As access to aid in dying expands this fall, one in five Americans will live in a state that permits legal aid in dying.

But many may still run into the problem the Walds had, because some hospitals and hospices see medical aid in dying as conflicting with their traditional mission of protecting life and avoiding harm to patients. Those that are faith-based typically follow church policy against medical aid in dying.

Some have policies that forbid nurses even to discuss end of life options. Others hold a “neutral” stance on aid in dying, but bar doctors or nurses from being in the room while a patient self-ingests the medication and begins the dying process.

In June, the American Nurses Association passed a position statement providing guidance on the nurse’s role in medical aid in dying, said Liz Stokes, the director of the American Nurses Association Center for Ethics and Human Rights.

“We want to be clear: Nurses absolutely do not have to be present or provide that comfort if they feel they have a moral or religious objection. Our code of ethics states they have the right to object,” Ms. Stokes said.

But for those who wish to support their patients, the new statement defines key words such as “participation” and “presence.” These definitions are meant to encourage organizations to be clearer in terms of a nurse’s ability to answer questions during the decision-making process or offer support in the final moments.

Currently, Ms. Stokes said many company policies are vague and difficult to interpret. Even terms like “to witness” or “to be present” may be open to interpretation. Ms. Stokes said the association has received inquiries from nurses wondering if covering their eyes qualified as not witnessing.

A 2014 study in the Journal of Pain and Symptom Management analyzed 30 policies from members of the hospice and palliative care organization in Washington, where aid in dying has been available since 2009.

Of the policies analyzed, 78 percent prevented nurses or other staff members from being present during or after the prescription was taken. The authors described the policies as “relatively silent” about the rationale for their decisions, but some referred to medical aid in dying as being “outside the scope of hospice practice.” Others did not want to be seen as “taking sides.”

The hospices that allowed staff members to be present made note of the core hospice value of not abandoning patients.

The study found that although the policies tend to be vague, there is a clear distinction between the role of the physician and that of the hospice. Physicians who write the prescription might not be employed by the hospice and therefore not subject to the organization’s particular policies. Policies note that physicians have a responsibility to respond to any complications that might occur after the prescription is ingested.

Each jurisdiction that permits medical aid in dying publishes annual reports on who took the medication, and why, where and whether medical practitioners were present.

In California’s report for 2018, only 54.3 percent of aid in dying patients were reported to have a medical care provider present at the time of ingestion. In Oregon’s 2017 report, only 33 percent of patients did. Many of these medical providers did not remain at the bedside, and 70 percent of patients in Oregon did not have a provider present at the time of death.

Keith Seckel, a registered nurse in Corvallis, Ore., believes it can be helpful to have a medical practitioner present. He has taken care of about a dozen patients who utilized their state’s aid in dying law. He was with them and their families as they took the lethal medicine and died. Mr. Seckel said a nurse is helpful in managing a patient’s discomfort or pain before taking the medication.

Many patients at the end of life experience anxiety, constipation, nausea, pain or shortness of breath. A patient who is short of breath, for example, might get anxious about swallowing the medicine for fear of choking. A nurse can provide reassurance, which Mr. Seckel said takes the pressure off the patient and family members to “get it right.”

He said that having a nurse in the room can also ease the stress for family members, particularly when their loved one makes unfamiliar sounds or unexpected movements.

Mr. Seckel said the timeline varies for each patient. The patient usually takes an anti-nausea medication anywhere from 15 to 60 minutes in advance. In all jurisdictions, the patient must administer the medicines themselves. Nurses and physicians are prohibited from assisting.

Mr. Seckel said some patients then take an anti-anxiety medication before the fatal dose. Within minutes, patients typically report feeling drowsy.

“I might offer to the patient, ‘If you can feel it hitting you, if there is something you want to say, say it now,’” Mr. Seckel said.

The patient then slips into unconsciousness. Mr. Seckel said he watches for signs of discomfort or pain. Some family members ask him for updates as their loved one’s breathing begins to slow or color drains from their skin. Others, Mr. Seckel said, are too connected to the moment to ask questions but want to review the experience with him later.

Because the laws clearly state that a patient must be able to take the medicine without assistance, Mr. Seckel said patients often have questions about their disease progression and how much time they likely have until they can no longer take the lethal medicine on their own. Often, the role of the nurse is to give patients information so they can determine a timeline for themselves.

He said there have also been times when he has been called to the bedside after the patient passed. He said it’s not uncommon for family members to want confirmation that their loved one is truly gone. “I’ve had more than one person say, ‘I’m glad you were there, we wouldn’t have known what to do,’” Mr. Seckel said.

Complete Article HERE!

How to cope with grief

 ‘Give your child honest answers about death’

By Tanya Sweeney

Experts say confronting grief and being honest about loss is best for children

Between the rough and tumble of early life, we soon find that children are more resilient than we think. Yet when it comes to a hurdle as big as death, our instincts might just be to carry them away from it all and to shield them from the enormity of the loss.

Years ago, this was very much the norm if a young child experienced the death of a loved one. No doubt people’s hearts were very much in the right place, and these actions come from a protective and loving instinct.

Yet experts believe that confronting the situation head on with the unadorned truth is a better start on a child’s grief journey.

Theresa Kavanagh is a support worker at the Limerick-based Children’s Grief Centre, who provide a listening service to children and young adults experiencing the death of a loved one, parental separation or other form of grief.

“It’s quite amazing how parents feel they’re protecting their child when they don’t allow them to participate in rituals like wakes or funerals, but a child has the right to say goodbye to the person they love,” she notes. “Children need, want and deserve the truth. Children are so perceptive. It’s amazing how much they know and how strong they can be,” she says. “I’ve heard of children being told that ‘Mammy is asleep’, while another little girl was told that her granny went on holidays and never came back. The problem is that younger children go into magical thinking and make things up. If they’re sent away in the event of a death, or not talked to properly, they will always blame themselves, even if the death is from something like cancer.

“I remember one young boy’s mother died of an accidental drug overdose, and he said, ‘I thought it happened because I was bold’. That’s why it’s so important to have open conversations, and also to validate how they themselves feel.”

Often, this can be easier said than done for adults who are also forging their own journey of grief and coping with loss. Often, it can be the first time that a parent or guardian finds themselves in that situation, so it’s entirely natural that uncertainty would reign.

“If a parent can express how they feel, it’s important to say ‘it’s sad, but I’m a grown up and I can look after myself’,” notes Kavanagh. “It’s interesting, a lot of parents haven’t dealt with their grief before they come to the centre, and it’s only when they’re here that they realise that. Parents and children seeking help at the same time can really help the healing process.”

Ann D’Arcy is a Senior Social Worker and Bereavement Coordinator at Our Lady’s Hospice and Care Services, Dublin, who has been offering workshops for bereaved children and their guardians for 14 years.

She notes that the grief journey for children is very different to that of adults.

“A child can’t sustain the depths of emotional pain for the same lengths of time,” she explains. “One minute they are talking about death, the next they’re back on their bikes or PlayStation as if nothing happened. But that doesn’t mean they’re not grieving.

“A very little child may listen to this and run off, and a parent might think they either didn’t take it all in, or the conversation is done, but with a young child developmentally, they’ll find it difficult to understand permanency,” explains D’Arcy. “They’ll often keep coming back to ask the same questions over and over again, trying to make sense of it. It’s important to remember you didn’t do it wrong in the first place. They will just need to talk about it over and over again to understand. It’s important to give a child the space, and permission, to grieve however they might like.

“We need to remember that grieving is normal, and most children are going to feel sad, angry and lonely. You might find that many children will express that physically — they’ll be more tired or experience tummy pains or headaches. Some regress to a younger age,” notes D’Arcy.

“The other thing that often happens is that they are terrified of losing their surviving family member. Most of the children I meet will want to ‘protect’ their surviving family members, and often won’t tell them how they really feel for that reason.”

Death really is the ultimate wrong-footer, and for that reason, grieving children often need to be grounded with certainties.

“Children need information on what happened around the death, but also reassurance that their meals will be given to them, school will still be there, and people will still love them,” says D’Arcy.

Offering children some sense of control over the situation offers them a valuable coping skill: “For one child, talking and looking at old photos is really important, for another, it’s too much and they don’t want to have that reminder in every room. It’s about negotiating that,” says D’Arcy. “Give the child a choice on whether they would like to view the body, and how they would like the loss to be acknowledged. Do they want something said in class for instance, or would they rather it wasn’t mentioned? Will they want to participate in Father’s Day?”

When discussing death or loss with children of all ages, the expert advice to do away with euphemisms and explain the situation in clear language.

“It’s always about giving very factual information to a child, and that’s why we recommend using words like ‘dead’ or ‘death’ and to explain what they mean,” observes D’Arcy. “It’s a very abstract concept for a child. Explain to them that when a person dies, they no longer feel anything. They’re no longer thirsty, cold, hungry, in pain, sad. It may look like a person is asleep, but the body stops working and the heart stops working.

“Be very, very concrete. Coming from a faith perspective, some people will believe the soul or spirit has gone to heaven, but just remember that young children will see that as a concrete place, and will probably ask when they can visit, or why the person won’t come back.

“If a child is seeing their loved one’s body, explain beforehand that their body might feel cold, and look a little different than usual,” adds D’Arcy.

Conversations for very young children need to be similarly concrete, though it may take them more time to assimilate the enormity of the situation. “If a child is asking the questions, it’s important to give the honest answer, really,” surmises D’Arcy. “It’s better to have had that conversation from someone they love, rather than hearing it in the school playground.”

Complete Article HERE!

Bereavement doula help grieving families with pregnancy loss

“I couldn’t believe the suffering. We can’t not support these families.”

By Meghan Holohan

When Holly Wilkerson was 21 weeks pregnant with her second child, she went for an appointment to learn her baby’s gender. Instead she heard tragic news: The baby had passed away at 16 weeks. Soon after she went into labor and returned to the hospital to deliver her stillborn baby. She had no idea what would happen. Then Heather Bradley arrived.

“I was very thankful to have her navigating. I had given birth before. This was a very different experience, obviously,” Wilkerson, 32, a high school German teacher from Greensburg, Pennsylvania, told TODAY Parents. “She really helped talk us through the feelings we were feeling, kind of making sense of things.”

Bradley is a bereavement doula, a professional who supports people “through grief and loss” of childbirth. While doulas coach families through pregnancy, birth and the postpartum period, bereavement doulas help families through pregnancy loss. That means they comfort them during the labor and delivery, help them fill out death certificates, assist in making funeral arrangements, help moms when their milk comes in and coach them on how to react when people ask, “What happened to the baby?”

What does a bereavement doula do?

“It is stuff you never think you’ll need to think about,” Bradley, of Pittsburgh Bereavement Doulas, told TODAY Parents.

Bradley had worked as a doula for years, but when a friend suffered a miscarriage she felt stunned by what the grieving mom experienced.

“It was awful. Hearing what other people said to her and how other people abandoned her. I couldn’t believe the suffering,” Bradley said. “We can’t not support these families.”

She started researching bereavement doulas, sometimes called death doulas, and took some online courses and attended conferences. For the past year, she’s been offering her services in the Pittsburgh region.

“The research out there has shown what is important to these families is continuity of care,” she explained. “It is the same person who knows your story and your issues. Having access to resources and options is key.”

Heidi Faith founded the bereavement doula training network Still Birth Day, which she started after she experienced pregnancy loss and grappled with so many difficult challenges. She wondered how she could tell her husband or what it was like to be a mother to a child who did not live. She had worked as a doula for a decade, so she realized she could offer something to families going through the same thing.

“I am here to bridge the gap where birth and death meet. I am here to provide comfort,” the Kansas City, Missouri-based doula told TODAY Parents. A bereavement doula, she said, “is someone who can translate and help them move forward while they’re crumbling.”

Often family or friends of a woman going through pregnancy loss finds Faith and connect with her or another bereavement doula for support for their loved ones. Faith finds that treating the family with dignity and respect helps them mourn and celebrate their child.

“A few generations ago they thought the most prudent thing is to rush the baby out of the birth space and tell the mother just to move on,” she said. “Women in our family tree will tell you, ‘50, 60 years ago I gave birth to my baby and she died and we never talked about it. I wish we would have.’”

Complete Article HERE!

Is Dying at Home Overrated?

A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.

By Richard Leiter, M.D.

“If time were short, where would you want to be?”

As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.

But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.

It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.

While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.

The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.

Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.

We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.

I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.

To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.

This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.

The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.

The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

Complete Article HERE!

War on words…

Cancer is a disease, not a battle

Emeritus professor Alan Bleakley and cancer patient Jacinta Elliott on the use of military metaphors, and Adrienne Betteley of Macmillan Cancer Support on end-of-life care

It is heartening to see a front-page article on the burden that the use of cancer war metaphors may place on patients (Cancer war metaphors may harm recovery, 10 August), but we should also note that such metaphors continue to place a burden on doctors and nurses, framing contemporary healthcare – dominated by medicine – as heroic, rather than pacific.

Further, it is simply wrong for the researchers that you quote to say of the relationship between martial metaphors and their impact on patients that “nobody has actually studied it”. Particularly since Sam Vaisrub’s 1977 book Medicine’s Metaphors and Susan Sontag’s 1978 polemic Illness as Metaphor, studies have isolated differing effects of a wide-ranging typology of violence metaphors on patients by age, sex and demographics. Professor Elena Semino and colleagues at the University of Lancaster have been at the forefront of such research in the UK for many years. Global research in the field is summarised in my 2017 book Thinking With Metaphors in Medicine.

To understand why war metaphors have such traction in medicine, we have to take a historical view. In 1627 the poet John Donne described how he thought he was dying from a fever that “blows up the heart”, that is a “cannon shot”. In the mid-17th century, the most famous physician in England, Thomas Sydenham, said that “disease has to be fought against, and the battle is not a battle for the sluggard”. Two centuries later, Louis Pasteur described illness as invading armies laying siege to the body that becomes a battlefield.

The phrase “war against cancer” was first used in the British Medical Journal in 1904. In 1971, Richard Nixon famously declared a “war on cancer”. No wonder that today’s patients are so readily stigmatised in the wake of centuries of martial insults. Isn’t a “hospital” supposed to be a place for “hospitality”?
Alan Bleakley
Emeritus professor of medical education and medical humanities, Plymouth University

Cancers are as variable as the people who develop them, so I heartily endorse comments made by Martin Ledwick, Cancer Research UK’s head information nurse, about everybody needing to find their own way of talking about it.

Battling metaphors hold an implicit suggestion that patients who succumb quickly have in some way failed to fight hard enough or have somehow “given in”, and that patients like myself who survive beyond their expected prognosis are in some way “tougher”.

Your report on recent research indicates that people can be put off seeking early treatment if the type of metaphors being used make it all sound too difficult and daunting.

This is very worrying as all the research shows that the earlier symptoms are detected, the better the chance of successful treatments and quality of life post-diagnosis.

There have been major advances in cancer treatments over the last few years. Instead of using off-putting language that deters people from getting symptoms investigated, we should broadcast news of steady progress in quicker identification and consequent longer life expectancy. So no “cure” as yet, but better options for living with cancer for as long as medically sustainable.
Jacinta Elliott

The ONS mortality report shows that dementia continues to be the leading single cause of death (Dementia is ‘biggest killer in England and Wales’, 7 August). But, if all cancers were grouped together then the disease would top the table.

Unfortunately, despite cancer accounting for over 145,000 deaths in 2018 (27% of the total), we know that thousands with the disease do not spend their final days as they would wish. Some are in hospital when they would rather be at home; others face insufficient pain relief, or are unaware of the choices available to them at the end of their lives.

This autumn, as NHS bodies draw up their plans for the next five years, it is critical that they set out how people at the end of life can get the truly personalised care they need.

Our hard-working NHS professionals do everything in their power to provide care and comfort at this crucial time, but there simply aren’t the numbers of staff with the right skills to have the important and compassionate conversations needed. It is vital that staff are provided with support and training so that they can prompt open discussions as early as possible and ensure people’s wishes are taken into account.

The only certainty in life is death, and we need to make sure that everyone has choice and dignity when it comes.
Adrienne Betteley
End-of-life care specialist adviser, Macmillan Cancer Support

Complete Article HERE!