Mindfulness And Meditation Can Make Your Final Days More Bearable

By Cassie Steele

Death is a one-way journey into the unknown and, as with any other journey you may have undertaken, it will go smoother if you are prepared as can be.  Being somewhat wary of death is natural with even the most spiritual and religious people being saddened at the thought of both their own deaths and the deaths of those they love. The reason death is not generally welcomed with open arms is that, after centuries of trying to understand it, it still remains a great unknown to most of us.  This is where mindfulness can be of most benefit – when the uncertainty surrounding death is strongest. By becoming mindful you will likely find yourself not only being more at peace with your situation but able to find joy and happiness in your surroundings even in the final days leading up to your passing. It will also enable you to view death as the inescapable yet strangely beautiful part of life that it is.

Mindfulness may help you to get comfortable with death

The emotional and spiritual acceptance of your own mortality is the greatest gift you can give yourself. Although dwelling on death continuously isn’t healthy, mindfulness can be very effective in reducing the tremendous anxiety we often experience when nearing our time of death.  Being mindful of your own death entails you coming to terms with your fate, facing your fears head-on and acknowledging your feelings. As difficult as it may seem, it is important to be at ease with all your varied thoughts regardless of how warped they may seem.

While it is near impossible to eradicate all the suffering involved in dying, it is possible to create a place to positively deal with anger, grief, and denial.  Once you become accustomed to practicing mindfulness you will find yourself feeling a lot calmer and ready to live your remaining life to the fullest. In his novella ‘The Canterville Ghost’ Oscar Wilde wrote: “Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forget life, to be at peace.” Once you become mindful of your own death, this is how you can perceive their own death as well.

Alleviate your discomfort

Apart from conventional medication and pain-relief strategies, there are a number of holistic approaches that can be employed to alleviate discomfort.  Adapting to a sensory experience helps to nurture joy and mindfulness. We are capable of reducing the physical pain we experience when we focus all our attention on what we see, smell, hear, taste or feel.  Although this may seem slightly far-fetched, the phenomenon has been documented in a range of scientific studies which includes ground-breaking research by American professor emeritus of medicine Jon Kabat-Zinn. The research showed that stress reduction based on mindfulness can drastically reduce pain as well as the depression and anxiety associated with coming to terms with your impending death. Once again take comfort in knowing that death is as natural a part of life as breathing is, and it is, in essence, nothing to fear.

Make your last days meaningful

We often hear people proclaim that we need to ‘live every day like it is your last’ and to ‘make every second count’ and that is exactly what you need to do as you near the end of your life. You have, after all, only been granted with a single shot at life and the least you can do is to make it as memorable as possible. By being mindful and practicing meditation, you can ensure that you get as much out of a day as is humanly possible. Be careful not to limit your mindfulness and apply it in all aspects of your life. You can even be mindful when eating, paying close attention to the entire process. Appreciate the smell and sight of your food, how it feels when you bring the fork or spoon closer to your mouth and how the food tastes. The same process can be applied to anything from sitting on your porch overlooking the garden to having a relaxing bath. Engaging in simple yet effective daily meditations that focus on breathing and pain reduction can help make someone’s final days substantially easier to endure.

Regardless of your spiritual or religious orientation, you are bound to benefit from engaging in end-of-life mindfulness and meditation. There is no rule book with regards to being mindful – by simply following basic guidelines and applying them to the areas of your life that will benefit the most from it, you will reap the countless rewards that being aware holds. Find solace in knowing that death is merely another journey you are about to undertake and one that you have the option of embracing with the same joy and vigor as you did life.

 

5 Life Lessons From End-of-Life Experts

Make sure to do these things while you are still able

By Lisa Fields

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.”

Complete Article HERE!

Does palliative sedation ease suffering during end-of-life care?

By

oward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article HERE!

Palliative Sedation, an End-of-Life Practice That Is Legal Everywhere

Jennifer Glass, a well-known San Francisco public relations executive, asked her husband, Harlan Seymour, to photograph her every day after her lung cancer diagnosis. Glass, an aid-in-dying advocate, died under palliative sedation in 2015, a year before a new California law allowing medically assisted suicide took effect.

Toward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

Elizabeth Martin, standing between her cousin Tamra Halfacre, left, and sister Anita Freeman. Martin, who had colon cancer, died in 2014 under palliative sedation administered to relieve intractable pain. While aid-in-dying is legal in seven states and Washington, D.C., palliative sedation, in which terminally ill patients are rendered unconscious to relieve intractable suffering, is legal everywhere in the United States.

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Jennifer Glass with her husband, Harlan Seymour, after she was diagnosed with cancer.

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article HERE!

Doing Death Differently

Death doulas: the end-of-life guides who are recreating the dying experience

By Isabel Bird

When Rebecca Lyons’ great aunt died, her body remained with the family.

Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.

“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.

“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”

It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.

Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.

A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.

Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.

Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.

Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.

She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.

“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.

“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.

“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”

Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.

Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.

She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.

“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.

Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.

“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”

Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.

“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.

“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”

Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.

Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.

Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.

She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.

“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”

Ms Jarvis stressed that early planning was important.

“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.

“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”

Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.

Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.

“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.

“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”

She added that alternative options are actually a return to the old way of doing things.

“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.

“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”

Complete Article HERE!

Patient-Physician Discordance Shows Need for Better Communication on End-of-Life Care

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

BY Jessica Skarzynski

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

In a study presented at the American Society for Clinical Oncology (ASCO) Annual Meeting, Sara Douglas, Ph.D., RN, and her colleagues evaluated the discordance between the goals of both patients and physicians, and how it can negatively impact quality end-of-life care.

The idea for this study was born from the researchers’ initial work examining physician and patient goals of care at end of life in the intensive care unit (ICU). “We found that there was a fair amount of disconnect between what the physicians’ goals were and the families’ goals were,” Douglas, who was lead author on the study, said in an interview with CURE.

However, she added that their initial research was missing the patient voice. “Because the patients couldn’t speak for themselves, we had their surrogate decision makers – which was usually a family member – determine what they thought the patient wanted,” Douglas added. “We didn’t know, really, what the patient was thinking.”

So, Douglas and colleagues took this basic framework and applied it to a situation where they had the greatest opportunity to understand both the patient and physician point of view consistently over time.

In a longitudinal design study that ran from January 2015 to July 2017, 378 patients with stage 4 gastrointestinal (66 percent) or lung (34 percent) cancers and their oncologists were surveyed at enrollment and again every three months for the next 15 months, or until the patient died.

Using a visual analog scale where one end indicated survival and length of life as most important (100 points) and the opposite end indicated that quality of life and comfort were most important (0 points), participants were asked to move a toggle along the continuum to represent their goals at each specific point in time. Discordance between patient and physician scores was defined as an absolute difference of more than 40.

Neither group could see the other’s responses, but Douglas noted the disparities were striking. “We had some scores where the difference was 92 points – one response was 100 and the other was 8. We had a lot of variability in terms of physician and patient responses,” she added.

In total, 168 patients (44 percent) died after an average of 6.5 months after enrollment; however, their results were still presented. At the last assessment prior to death, 32 percent of the patients and their physicians reported having discordant goals. Of these cases, 60 percent of patients had more survival-focused goals compared with 40 percent of doctors. Lastly, 77 percent of pairs with discord at enrollment still had discord at the last assessment before death.

When the physicians were asked what they believed patients’ goals of care were, there was only a 27 percent discord in what the patients’ actual goals were. “Physicians, when asked what their understanding is of what the patient wants, assume it’s the same thing the physicians want themselves,” Douglas said. “This is called false consensus bias, (meaning) I assume you agree with me unless there’s evidence to the contrary.”

Douglas did note that extreme discordance was not the norm. “If you think about it, 27 percent of the dyads were in sharp disagreement, but that means that 73 percent were in agreement to some degree,” she added.
Douglas acknowledged that these findings highlight the need for patients and their physicians to have clear discussions and come to a better understanding, so that patients will receive end-of-life care that is consistent with what they want. But if communication is key, where should it start?

Research has shown that patients often expect physicians to bring up these topics. But due to many factors, including the physician’s comfort levels when dealing with these topics, these discussions may not take place. So, Douglas and her team have begun a new study where they share the information and record the discussion to better understand why each party feels the way they do, and then see if either patient or physician changes their goals.

Ideally, they hope to create a model that empowers patients to take a more involved role in starting these discussions. “If patients can at least have access to […] what their physicians are thinking and why, they can at least make an informed decision,” Douglas said.

“That decision may be that they choose to disregard that information, but at least they’re making an informed decision.”

Complete Article HERE!

‘When my husband died I married his best friend’

By 9Honey I As told to Libby Jane Charleston

Angela and Pete had the perfect marriage but it all ended when he tragically died at the age of 34. Angela was overwhelmed with grief when her late husband’s best friend stepped up to play a major role in her life.

I was married to Pete for only two years and I was madly in love with him. We’d only been dating for three months when we got engaged, it was a whirlwind romance of the most romantic kind, better than anything I could imagine. He was the kindest, sweetest man and everybody adored him.

Then tragedy struck and he was involved in a motorbike accident and killed instantly. I was at work when I heard the news and to this day, I still can’t believe he has gone. My life fell apart all around me. When I say everyone was devastated, I’m not exaggerating; friends, family, workmates, casual acquaintances, there was an outpouring of grief.

But I believe nobody was more impacted than me. For a long time I struggled to get out of bed, I couldn’t eat, couldn’t sleep, my grief took over my life. The only person who really stuck by me in terms of helping me get over the initial first stages of grief was his best friend, Andrew, who became my rock.

He was also grieving the loss of Pete but he would come over first thing in the morning, make sure I got up and had breakfast, he helped me and his family prepare for the funeral, and after the funeral when so many people went back to their own lives and I was pretty much forgotten, Andrew was by my side at all times.

So it was no great surprise that after leaning on each other so heavily in those painful months after Pete’s death that Andrew and I got closer and closer, eventually falling in love. We waited for a year before we let everybody know that we were now a couple and perhaps that was too soon because I was shocked at the reaction of people that I thought were friends.

Most of all I was shocked by the reaction of Pete’s family who were horrified that Andrew and I were together. Only Pete’s sister was accepting of us, she said she was pleased to see us both smiling again and that we both deserve happiness after having Pete ripped out of our lives in such a shocking way. Pete’s parents and his brother were a different story, his mum said she was ashamed of me, that Andrew and I must have been having an affair which was not true at all.

Pete’s parents made my life very difficult and because I inherited the house we’d bought shortly after we married, they objected to me living there with Andrew, which was pretty ludicrous.

Looking back, I realise they were still grieving and I became the target of their anger. But it was really upsetting that they didn’t see that what had happened in the aftermath of Pete’s death was some kind of miracle, that two people that Pete had loved, found happiness together. We’re now expecting a baby and I’m determined to reach out to my former in-laws and hope they will give this baby their blessing and instead of feeling all this anger towards me, that they finally have compassion for me.

Complete Article HERE!