Is This How We Conquer Our Fear of Death?

It is both absolutely possible and absolutely necessary to reframe the national dialogue around death, and make it a more open and honest discussion.

By Sarah John

Sarah John

It is a well-documented fact that few topics are as taboo as death. According to Psychology Today, current American society sees death and dying “as profoundly ‘un-American’ experiences” because they force us to confront our own lack of control. In a society that prizes individualism and forging one’s own fate, the finality of death threatens the way that many Americans choose to view themselves. Normally, we choose to avoid discussing the subject. “Instead of confronting their own mortality, many Americans tend to label such talk as ‘morbid’ and try to stave it off — along with death itself — as long as they can,” author, anthropologist and Brandeis University professor Anita Hannig said.

For most Americans, there is never a good time to talk about death — and that includes the times when they or someone they know has been touched by it.

When I lost a parent, several people in my own life were extremely uncomfortable with the vulnerability that surrounds death, mourning and tragedy. Throughout that period, I felt that my job was to recover as quickly as possible from grief so as to be “normal” again as if grief was an unnatural or perhaps inconvenient process. It took time for me to realize it is neither of those things. Even today, mentioning loss can be stressful, as I worry about how best to explain my situation without “killing the mood.” In my experience, I find that most people would prefer to never think about death, even as it affects people around them.

Can we conquer our societal fear of death? Given the strong aversion most people have to the topic, I have spent some time grappling with that question.

In the end, I believe the answer is yes. It is both absolutely possible and absolutely necessary to reframe the national dialogue around death and make it a more open and honest discussion.

The first thing that is essential to understand is that our national beliefs regarding death are inextricable from a number of other issues. Our thoughts on death, widows and widowers, hospice care, national tragedy, suicide and the rights of the terminally ill are all tangled together. If we cannot discuss tragedy at an individual level, then we are also unable to discuss how to better the lives of those affected by it.

Initiatives to open up dialogue around death have already begun. In January 2011, after finishing mortuary school, Caitlin Doughty started The Order of the Good Death. The Order describes itself as “a group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality.” The Order encourages creating a conversation about the topic of death, partially so people can ensure their end-of-life wishes are met. The Order also highlights the importance of legal protections for the dying and dead, and the importance of equal access for everyone to have their death rites fulfilled. We can also look to when in 2016, noticing the lack of conversation around death, Hannig designed the class “Anthropology of Death and Dying.” After taking the class, students reported numerous gains, including more respect for the elderly. One student decided to intern at a hospice over the summer. Another said the class helped her process her grief for a loved one.

Today, you can even download the WeCroak app, which sends you five daily reminders that everyone, well, croaks — so we all better choose to live well.

Death is a sad and tragic reality of life, and one that can’t be ignored. It is never something to be glorified or celebrated. But it eases death’s pain for everyone when we can, at the very least, calmly acknowledge mortality. It is true that discussing death is extremely uncomfortable in most circumstances. But living in fear of death — and isolating those that have experience with it — is a much worse fate.

Complete Article HERE!

Patients in end-of-life care to be treated with magic mushrooms

A spokeswoman for Palliative Care Australia said anxiety is a common and distressing symptom for those entering the final stage of their life.

By Benjamin Ansell

Palliative care patients will be treated with the psychoactive ingredient in magic mushrooms in a bid to reduce their anxiety during end of life care.

The first of 30 patients in Melbourne’s St Vincent’s Hospital trial will be treated with psilocybin in April after a year-long battle to have the study approved by the ethics committee, as well as state and federal authorities.

Patients will be given a single dose of the psychedelic drug, which stimulates feelings of euphoria and is believed to be able to ease anxiety, fear and depression for up to six months.

Applicants will be screened, requiring a state government permit to take the medication, and will be closely monitored by two clinicians on the ‘dose day’ while the initial high wears-off.

“With therapists in the room providing therapy it will allow people to have a heightened awareness of their situation, see the problem and work through it,” Mark Bowie, director of Palliative Medicine at St Vincent Hospital, said.

St Vincent’s clinical psychologist Dr Margaret Ross said patients in the study will be given a single dose of the drug in capsule form.

A similar trial conducted at New York University found 70 per cent of patients later reflected on the psilocybin experience as one of the top five most spiritually significant experiences of their entire lives, while 87 per cent reported increased life satisfaction overall.

Vice President of Australia’s Psychedelic Research In Science and Medicine Association Dr Stephen Bright told 9News that the study “sets a precedent” for more research into the medical application of psychoactive substances.

Patients will be treated with the psychoactive ingredient in magic mushrooms.

“I think it’s fantastic this study has been able to obtain the requisite approval, there have been multiple attempts to use psychedelics which have all been knocked back,” Dr Bright said.

“The fact that this has been able to secure approval is very encouraging.”

Dr Bright, also a senior lecturer at Edith Cowen university, is currently attempting to secure funding and ethics approval for another study on the potential of MDMA to be used in the treatment of Post-Traumatic Stress Disorder.

A spokeswoman for Palliative Care Australia told 9News.com.au anxiety is a common and distressing symptom for those entering the final stage of their life.

“This can be triggered by concerns and fears about how they will die, how their families and loved ones will cope as well as existential or spiritual concerns,” the spokeswoman said.

Complete Article HERE!

Doctor seeks to ease fear, anxiety and discomfort surrounding impending death

Dr. Bob Uslander with a patient

By Joe Tash

Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”

To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.

A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.

His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.

While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.

“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”

Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.

“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.

In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.

Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.

Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.

“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”

The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.

Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.

The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.

Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”

Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.

Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.

“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.

For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.

Complete Article HERE!

What if psychedelics could revolutionize the way you die?

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My story begins eight years ago, when I was approached by my first client requesting that I supervise her in a therapeutic session with a psychedelic medicine.

She had debilitating depression and anxiety brought on by a breast cancer diagnosis. Although she had survived her cancer, she couldn’t shake her terrible emotional distress. She had tried therapists, pills and a residential program. Nothing had worked.

Then she came across stories in the media about research at UCLA using psilocybin (the active ingredient in magic mushrooms) with cancer patients suffering from what was called “end-of-life distress” and how this new treatment was showing really promising results.

She was desperate to try it for herself.

Well, as a licensed therapist and academic, could I help this woman? Reading the research literature, I learned that psychedelic research was becoming well-developed as a treatment for the psycho-spiritual depression and “existential anxiety” that often accompany the diagnosis of a life-threatening illness.

I also found myself in a bind: The science was telling me that psilocybin is the treatment most likely to benefit patients with existential anxiety when other treatments have failed; my ethical code from the B.C. Association of Clinical Counsellors tells me to act to my client’s benefit; federal law forbids me to use this treatment.

This is why, together with colleagues in the Therapeutic Psilocybin for Canadians project, I filed an application with Health Canada in January 2017, seeking a so-called “Section 56 exemption” — to permit us to provide psilocybin-assisted psychotherapy to patients with terminal cancer.

Immediate decrease in death anxiety

Dinah Bazer found relief from cancer anxiety by being treated with a dose of psilocybin administered by a New York University study.

Recent research at Johns Hopkins Medical Centre and New York University indicates that treatment of this end-of-life distress with psilocybin-assisted psychotherapy is safe and effective.

The research indicated it led to immediate, substantial and sustained decreases in depression, death anxiety, cancer-related demoralization and hopelessness.

It resulted in increased quality of life, life meaning and optimism. And these changes had persisted at a six-month follow-up.

Patients attributed improved attitudes about life and death, self, relationships and spirituality to the psilocybin experience, along with better well-being, life satisfaction and mood.

It is heartening to see research moving into Phase 3 clinical trials that will involve many more research participants. However, the foreseeable future for Canadians who need this game-changing therapy is not especially rosy.

At our current rate of progress, it may well still be years before psilocybin successfully completes Phase 3 trials and becomes available as an orthodox medicine.

Therapists risk criminal penalties

In the meantime, many Canadians with terminal cancer are also suffering from end-of-life distress, and are in dire need of relief — now.

They face serious and life-threatening illness. Their condition is terminal, so concerns about long-term effects of psilocybin are not relevant. They suffer from serious end-of-life psychological distress (anxiety and depression) to the point that it interferes with their other medical treatments. And this distress has not successfully responded to other treatments.

Psilocybin is currently a restricted drug, meaning that therapists risk criminal penalties if they aid or abet its possession. That means that we cannot recommend or encourage its use.

My professional Code of Ethics, however, states that our ethical duty is to act in a way that serves our clients’ “best interests.” The service we provide has to be “for the client’s benefit.” We must “take care to maximize benefits and minimize potential harm.”

A compassionate, humanitarian death

I agree with the Canadian medical establishment that, in ordinary circumstances, new medicines should be made available to Canadians only when they have successfully completed Phase 3 clinical trials.

In the New York University study a pill, containing either a placebo or psilocybin, was presented to the subjects in a chalice.

But I contend that the patients described here are not in ordinary circumstances. They have terminal cancer. All other treatments have failed them; they have nothing left to lose. They have the right to die; surely they have the right to try!

These patients deserve access to a still-experimental but promising medicine on compassionate and humanitarian grounds. Because of their extraordinary medical straits, psilocybin now for them represents a reasonable medical choice; it is necessary to them for a medical purpose.

Our application to Health Canada seeking a “Section 56 exemption” will be ruled on very shortly.

We fully expect that it will be denied — for political, not scientific reasons. Justin Trudeau’s Liberal government is likely in no mood to loosen up on psychedelics before the dust from the legalization of cannabis has fully settled. I think the government would like it if someone else made that decision.

Violation of our rights and freedoms

If our application is denied, we intend to file for a judicial review, and if necessary, a lawsuit in Federal Court challenging that denial.

We believe that prohibition of access to psilocybin for a legitimate medical purpose violates a citizen’s Canadian Charter of Rights and Freedoms Section 7 right to “life, liberty and security of person.”

This clause has already been interpreted by the Supreme Court to imply that a citizen has the right to autonomy in making health-care decisions. Charter-based arguments have already led to success in three recent landmark medical cannabis cases.

We argue that what applies to cannabis also applies to psilocybin:

The prohibition of … cannabis “limits the liberty of medical users by foreclosing reasonable medical choices through the threat of criminal prosecution. Similarly, by forcing a person to choose between a legal but inadequate treatment and an illegal but more effective one, the law also infringes on security of person.” Supreme Court of Canada, R. v. Smith, 2015

One thing that unites all of us human beings is that we will die. Imagine if, when our time comes, we could all have the option to die peacefully, with acceptance, without anxiety.

Complete Article HERE!

How death disappeared from Halloween

Americans tend to avoid opportunities to engage with their own mortality

“Trick-or-treating was a way of buying kids off,” says author Lisa Morton.

By Vittoria Elliott and Kevin McDonald

Halloween in America is awfully cute these days — both in the sense that children’s costumes have reached unimaginable heights of adorability and that the holiday has lost its darkness — and that’s rather awful.

Sexy avocado costumes obscure the holiday’s historical roots and the role it once played in allowing people to engage with mortality. What was once a spiritual practice, like so much else, has become largely commercial. While there is nothing better than a baby dressed as a Gryffindor, Halloween is supposed to be about death, a subject Americans aren’t particularly good at addressing. And nowhere is that more evident than in the way we celebrate (or don’t celebrate) Halloween.

Halloween has its origins in the first millennium A.D. in the Celtic Irish holiday Samhain. According to Lisa Morton, author of “Trick or Treat: A History of Halloween,” Samhain was a New Year’s celebration held in the fall, a sort of seasonal acknowledgment of the annual change from a season of life to one of death. The Celts used Samhain celebrations to settle debts, thin their herds of livestock and appease the spirits: the kinds of preparations one might make if they are genuinely unsure whether they will survive the winter.

But in America today, that kind of acknowledgment of imminent mortality rarely occurs, according to Anita Hannig, an anthropologist and professor at Brandeis University. “When we recognize our mortality, we make preparations for it,” she says, mentioning a Romanian acquaintance who had bought their grandmother a coffin for her birthday. “But in the U.S., that kind of engagement is seen as almost frivolous.”

But what could be less frivolous than talking about a wholly universal experience?

“Every other culture has a time set aside during the year where the dead visit,” said Sarah Chavez, executive director of the Order of the Good Death, a group of funeral industry professionals, academics and artists devoted to preparing a “death phobic culture for their inevitable mortality.” Part of the power of these rituals is to make death into a known quantity, something to be accepted, even embraced, rather than feared.

When Roman Christian missionaries began to convert the Celtic peoples, local holidays were not banished, but rather co-opted. All Saints’ Day, formerly celebrated in mid-May, was moved to Nov. 1 as a way to tame the wild Celtic tradition of Samhain. All Saints’ Day is a celebration of all the dead who have attained heaven in the Catholic tradition, a death-centric celebration if there ever was one.

But the rowdiness of Samhain proved difficult to dislodge, according to Morton, so the Catholic Church tacked on All Souls’ day on Nov. 2, to offer prayers for those who were stuck in purgatory. This three-day celebration began on the evening of Oct. 31, eventually becoming All Hallows’ Evening in reference to the holy days to follow.

When the Spanish colonized what is now Mexico, they used the same strategy, taking indigenous rituals and co-opting them into the church, creating what we know today as Día de los Muertos. In both instances, the holidays retained their focus on the ritualistic recognition of mortality and honoring the dead, with the church as arbiter of the afterlife.

Halloween arrived in the United States in the 1840s, brought by Irish and Scottish immigrants fleeing famine. Popular activities included fortunetelling, speaking with the dead and other forms of divination. (To get a sense of how uncomfortable many Americans are with the dead, try this at your next Halloween party and see what kinds of looks you get.)

Catholic-infused Halloween and Samhain shared several similarities with Día de los Muertos. They were both feast days, filled with candles and a reverence for the dead. The traditional sugar skulls, or calaveras, are similar to Halloween’s “soul cakes,” sweet treats people would offer in exchange for prayers for dead relatives languishing in purgatory.

The calavera tradition remains in the modern form of Día de los Muertos, but in the United States, soul cakes have all but vanished. We now have trick-or-treating, a tradition borne purely out of concerns for the living. In the early part of the 20th century, destructive young pranksters would take full advantage of Halloween, vandalizing and destroying property.

“It was costing cities a lot of money,” says Morton. Instead of banning the holiday altogether, neighborhoods banded together to host parties and give out snacks. “Trick-or-treating was a way of buying kids off.”

Similar to how Halloween has drifted from death ritual to doorbell ringing, modern American engagements with death have changed from up close to a culture of avoidance.

In a lot of ways, Halloween in the United States “mirrors our experience with death directly,” says Chavez.

“We used to take care of our dead in our homes — people used to die at home. We took care of our loved ones, dug their graves. We were there through the entire process. We have no idea what death looks like anymore,” she says. And that ignorance breeds fear, uncertainty and avoidance.

Today, about 80 percent of people die in a hospital or a nursing home. Hannig calls these “institutional deaths,” and they’re just one part of how modern death has been sanitized and sequestered away from the world of the living.

“The responsibilities of death have been outsourced,” she says, adding that hospitals and the mortuary industry allow ordinary people to avoid engagement with the messiness and gruesomeness of death.

“When someone dies in a hospital, oftentimes the body will be whisked away almost immediately and family and friends won’t see it again until after it’s been embalmed.”

And it’s not just dying that modern America is losing touch with; it’s death rituals as well. As the United States becomes increasingly secular, religion’s role in making meaning out of death has shrunk. According to Hannig’s research, memorial services are becoming less and less common, and a collective honoring of the dead — something like All Souls’ Day — is practically nonexistent.

Hannig pointed out that in many other cultures, death is a community affair and something people prepare for together. In certain Buddhist communities in Nepal, for instance, when someone dies they will be surrounded by their loved ones and valued possessions to make sure they don’t have any longed-for attachment tying them to life. It’s a way for both parties — the dying and the living — to accept and let go.

Instead, modern Halloween focuses on the creepy and the capitalistic. “We consume death in a commercialized, entertainment way,” says Chavez. By making death fantastical, we make it feel almost impossible, and therefore less threatening. “We know that a zombie movie isn’t realistic. It’s all a way that we can reassure ourselves that we are safe and it won’t happen to us.”

But haunted attractions, horror films and safety from zombies haven’t made us less afraid of death. If anything, by continuing to keep death at a distance, we transform it into an unknown: possibly the scariest thing of all.

Doctors and the D Word:

Talking About Death Is an Essential Skill — and One Often Lacking

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The vast majority of physicians enter medicine because they want to help people, so it’s not necessarily surprising that many are uncomfortable discussing death with their patients. However, when that discomfort reaches so far as to prevent conversations that patients need and want to have, it’s a problem, experts say. 

A physician’s discomfort with talking about death can go as far as avoiding the word itself, says Helen Stanton Chapple, PhD, RN, an associate professor at the Creighton University Center for Health Policy and Ethics and College of Nursing in Omaha, Nebraska. Although she’s been out of clinical practice for about a decade, Dr Chapple recalls the euphemisms many providers used to avoid the subject.

Dr Chapple explained that the closest she’s heard physicians come to acknowledging that a patient is dying is saying that, “the illness is not survivable,” she told Medical Bag. “Part of it is that they don’t get any training, part of it is that they don’t see it modeled when coming up in residency training, and part of it is that they dislike trying to tell the future. That’s a problem.”

Fortunately, things are beginning to change in terms of the training and education physicians receive. The Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 1676), introduced to Congress by Representative Eliot Engel in 2017, for example, proposes amending the Public Health Service Act to beef up support for palliative care, including training for healthcare professionals.

“It’s still widely variable at different medical schools and institutions, but I think it’s becoming much more accepted that this is part of the basic skills a physician needs,” said J. Randall Curtis, MD, MPH, a professor of medicine and director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine in Seattle.

“More and more medical students and physician are being trained in giving bad news and how to have these conversations,” Dr Curtis told Medical Bag. “But it doesn’t make these conversations easy. You’re working with a patient, and you have to give them bad news. It’s hard even if you’re trained and good at it.”

And change is slow, says Lori Bishop, RN, MHA, vice president of palliative and advanced care at the National Hospice & Palliative Care Organization in Alexandria, Virginia.

“I think there’s a concern or perception that some of these conversations could reduce hope or take away hope,” Ms Bishop told Medical Bag. Research suggests the opposite, she adds. “People with serious illness are really expecting to have these conversations and want to have them, but they’re waiting for the doctor to initiate that conversation, so sometimes it doesn’t happen.”

Interestingly, clinicians perceive difficulties with patient and family responses as bigger barriers to these discussions than their own skills and limitations, but patient research does not quite jibe with those findings.1

A small, qualitative study published in 2015 found that “many participants were very comfortable talking about their own death.”2 The authors concluded, “Being able to talk about end-of-life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.”

It’s not just patients waiting for the physician to take the first step. Providers across the medical profession tend to believe that physicians should lead the discussion, both because of their medical training and because of their ability to answer clarifying questions about the patient’s prognosis, suggests a 2016 qualitative study in the American Journal of Hospice and Palliative Care.3

Broaching the topic as early as reasonably possible also gives patients more time, information, and opportunity to make the decisions they want based on their values and their place in life, Ms Bishop added.

“I may choose a different path once I start a conversation if I know what my risks are and where I’m at in the trajectory in a disease,” Ms Bishop said. “You miss an opportunity for some pretty rich discussions when you don’t have these conversations. It’s not just a medical conversation. It’s really in context of that whole individual and where they’re at in their life and what matters to them.”

Why Doctors Delay

The reasons for physicians’ discomfort with conversations about dying are as much cultural, social, and systemic as they are personal, Dr Chapple told Medical Bag. The health care system is set up in such a way that necessary changes in a care plan do not always keep pace with changes in a patient’s condition, particularly if those changes occur overnight or on weekends when the primary medical team is off. It’s attending physicians who make the decisions, not the nurses or residents who may see the patient — and their deterioration — more frequently.

“Part of it is nurses having to witness and inflict the suffering and getting sick of it when they think there’s no good outcome,” Dr Chapple said. “They become like a Greek chorus, commenting to each other and to individual residents, but the attending physicians make the decisions and have their own reasons.”

A Dutch research project4 found the biggest reasons for delaying conversations about a patient’s death were “timing (when is the right moment?), reserve (because of the potential emotional despair of the patient), and hope (who am I to rob a patient of their hope?).”4

Nurses may develop a better sense than doctors for some of these answers because they are the ones implementing interventions, Dr Chapple added.

“They’re hanging the IVs, putting the machines on, monitoring the patient and doing all this stuff, so I think they have a sense of when there’s no resilience left,” Chapple told Medical Bag. “So the nurses are looking at the big picture, and the physicians are trying to tweak each complication.”

That tweaking mindset often begins from the first conversation, when a physician tells the patient about a terminal diagnosis but hardly before launching into the treatments they can offer.

“There’s a way of telling that doesn’t let you deal with the existential reality of it and instead moves you immediately into the steps you’re going to take,” Dr Chapple said. She noted that some research has shown that patients are surprised when they learn their treatments were never intended to be curative, even if they were told.

Physicians’ discomfort with discussing death may also arise from differences in patients’ ethnicity or faith. A 2015 study published in PLOS One surveyed more than 1000 physicians and found that 86% rated it “a great deal” or “quite a bit” challenging to discuss death with patients of a different ethnicity.5 In a 2016 study published in the American Journal of Hospice and Palliative Care, providers (albeit mostly nurses) rated conducting a spiritual history with patients as particularly difficult.6

A 2016 systematic review of the research lends credence to all of these reasons: “Recurrent themes within the literature related to a lack of education and training, difficulty in prognostication, cultural differences, and perceived reluctance of the patient or family,” the authors wrote.7

The problem, however, is more complex and far reaching than even those reasons, going deep into the heart of who we are as Americans, the way our healthcare system is set up, and how a big part of the economy’s growth relies on technology, Dr Chapple told Medical Bag.

“In the United States, it’s all tied up together with the idea that if we’re not living and growing and using technology to gain our salvation, there’s something wrong with us, that we have to fight, fight, fight, against death,” Dr Chapple said. “There is something about our culture and what we find acceptable and desirable that’s given us the terrible healthcare we have, that spends most of its money rescuing people from death and stabilizing them and spending so much less money on prevention and universal access to healthcare.”

While that perspective is expansive, reaching toward larger philosophical ideas regarding how our culture thinks about death, it also contains a key to learning to grapple with those conversations, Dr Chapple suggested.

How to Become Better at Talking About Death

“What palliative care people tell me is that the conversation is not difficult,” Dr Chapple said. “Part of what would be helpful is for a physician to think through for themselves what their own thoughts are about dying. What are your own fears, what is the unresolved grief you have about people you’ve lost in your life? Maybe that’s part of the internal work physicians have to do for themselves.”

Physicians who find that difficult may look for triggers they can rely on, such as initiating end-of-life care conversations when a patient reaches a certain age, or when a specific development occurs in a person’s progression of a chronic disease.

An extensive 2001 qualitative study identified 6 areas particularly important for physicians to consider in talking with dying patients8: “talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death,” the researchers wrote.

As with any skill, the secret to improving isn’t really a secret: practice, practice, practice.

“Practicing the conversation is the only way to get better at it and hone that skill,” Ms Bishop noted. “Some physicians have had access to training where they can role play with a mentor or with someone who has that skill set and get feedback on what they may want to do differently.”

Ms Bishop suggests starting these conversations by asking patients what’s important to them at this point in their life and how they feel things are going — and then listening.

“You get a lot of insight into what a person already knows about what their issues are or you may be surprised and find out what matters to them is not at all what you think it is as a clinician,” she added. “It just makes for holistic care when you have the conversations.”

But again, becoming more skilled with these conversations certainly doesn’t make them more pleasant.

“The goal of training is not to make it easy and fun,” Dr Curtis told Medical Bag. “Physicians by and large go into medicine to help people and make people feel better. To be in this position where you have to give bad news is difficult, but it is important, and being trained allows you to do it well and work with that discomfort.”

It’s also an ongoing conversation because people at different stages of life will change their opinions about what they want as circumstances or the disease itself change, she adds.

“We’re all going to die. For anyone who’s in the medical profession, there’s a certain subset of their patients who will die,” Ms Bishop said. “You can ease that burden if you start to have those conversations when someone is well and continue those conversations as the disease progresses.”

For physicians who are interested in brushing up on their communication skills in the face of bad news, there are a number of available resources, including VITALtalk and the Association for Death Education and Counseling. A list of organizations who provide assistance and information on multiple topics related to trauma, grief, dying, and death can be found here.

Complete Article HERE!

How to sit with someone who’s dying

Don’t feel you have to hold back your emotions during this time.

By Carol Rääbus and Roisin McCann

When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.

“I was really frightened.”

It was Andreas’s first experience of being with a dying person and it made him anxious.

“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.

“And then he had one final really deep inhale and exhale, and it was fine.

“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.

“Death isn’t weird at all, really. It’s quite normal and kind of OK.”

The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.

What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?

We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.

When should I visit someone in hospital or hospice?

Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.

Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.

Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.

Should I bring food, photos or mementos?

Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.

Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.

End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.

Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.

“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.

Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.

What should I say?

Spending time with a dying loved one can be scary, but worth it for them and you.

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.

Gentle touch, like holding a hand, can be enough to let someone know you’re there and you care.

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.”

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