10/13/17

Caitlin Doughty Talks Exploring the World to Find a Better Death in From Here to Eternity

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By Bridey Heing

The question of what happens when we die—in a literal rather than philosophical sense—haunts many of us. But few have made it the focus of their life’s work like Caitlin Doughty. An advocate for shifting the conversation about the “right” way to care for deceased bodies, Doughty owns a Los Angeles funeral home and organizes events where people discuss death with a range of approaches. Her latest book, From Here to Eternity, explores death culture around the world, illuminating the many ways to hold a funerals.

Doughty describes herself as having always been interested in death, but it was after studying Medieval History that she wanted to learn in a more hands-on setting. “When I graduated from college,” she says in an interview with Paste, “I decided that I wanted to see what real dead bodies look like and how they were being taken care of and disposed of.” She found an opportunity when she got a job at a crematory, where she immediately felt a connection to the work. “It’s hard to describe to people, but really from the second that I started working at the crematory, it was like, ‘Oh, this is what I’m supposed to be doing.’”

Doughty immediately recognized that the knowledge gap between the funeral industry and the general public is significant; she says no one quite knows what happens with a body after death. So not only did she want to learn more about the American way of death, but she wanted to talk about it with others. Her first book, Smoke Gets in Your Eyes, chronicled her journey into the funeral industry. And if she needed any indication that people were willing to listen, the fact that the book was a bestseller suggests that there is a desire to learn more about what takes place behind the scenes.

Doughty received a similar response a few years earlier when she founded the Order of the Good Death, an organization dedicated to expanding our understanding of and comfort with death. The organization established a space where everyone from academics to creatives could discuss death. “I was trying to create a community around death, and over the years it has become a resource. It’s hopefully a place where the culture of silence around death can, even just for a moment, be broken.”

Breaking the culture of silence around death is the heart of From Here to Eternity. Each chapter focuses on one or two cultures that handle death in unique ways. In Indonesia, Doughty watched as mummies were taken out of special house-slash-tombs to be feted. In Japan, she visited hotels where families spent time with loved ones’ corpses before cremation. In Colorado, she witnessed an open-air pyre where the community came together to honor the dead. In Bolivia, she made offerings to skulls called natitas, which were dressed up and paraded in the streets during the annual festival in their honor.

Doughty’s mission with her new book is to start a conversation about death in other cultures in a way that says something about U.S. funeral culture, and she wants to communicate the significance of rituals other than our own to combat a lack of cultural relativism.

“I see over and over again people talk about American death tradition, like embalming and burial in a big vault underground, and not liking that at all,” Doughty says. “But at the same time, whenever they heard about something that goes on overseas, they’d go, ‘Ugh, that’s so disrespectful and morbid.”
From Here to Eternity humanizes rituals that might otherwise seem unfathomable. “Even the things that are so out there by our standards feels so normal when you’re there. I wanted to get across that just because it’s not what you do doesn’t mean it’s weird or morbid or should be disparaged.”

Doughty’s text about the way families interact with their deceased loved ones is incredibly moving. But she doesn’t lose sight of her own role as an outsider observing a deeply intimate ritual, and she even talks about the ways in which death tourism has become an issue in countries with well known ways of handling their dead.

“You go into it thinking, ‘I have the best intentions, I’ve spent my life researching these things.’ But the family doesn’t know that,” she says. Doughty relied on local contacts and close friends, who could make sure she didn’t overstep while families were grieving. “The places I chose to go were places I had some in, whether that was a local guide or a person I know who travels all the time to these places.”

While the book has an international focus, the message is clearly one of a domestic nature. The shadow of how the United States handles death is always present, and Doughty dips in and out of her travel narratives to contrast what she sees with what she experiences in her own work. She also questions the very foundations on which the United States has built its funeral industry, including supposed health concerns that have led to profit-driven models of post-death care that many funeral homes require.

Doughty ultimately wants to change the way we talk about and experience death for a simple reason: she regularly hears about how frustrated Americans have been with their own experiences grieving loved ones. “This is my country and my own industry that I work in and own a funeral home in, and it doesn’t seem to be working for a lot of people,” she says. “If I didn’t hear that again and again, I wouldn’t keep doing this work.”

Doughty doesn’t advocate anywhere in the book for one system over another, but she does reveal that the U.S. system as it exists is deeply flawed. Her goal is to explore better ways to handle death, and in this, From Here to Eternity succeeds.

Complete Article HERE!

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10/12/17

The G-Spot: A Good Death

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Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

-Dylan Thomas

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As organisms that fight for survival, just as other organisms on the plant, a fear of death is built into our psyche. We write about it, we sing about, and Woody Allen obsesses about it. Throughout the ages, civilizations have created various deities to try to explain our origin, our purpose, and our fates when our bodies fail us. As science has evolved, we have learned to worship technology as a new deity that may protect us from aging and our ultimate demise. Despite our growing medical technology, life still has a 100-percent mortality rate. Someday, you are going to die.

Our medical technology sometimes gives us false hope. We pray to the false gods of machines and newer and more expensive pharmaceuticals to stay our execution, often without the thinking about the financial and emotional costs. As a society, we need to be good stewards of resources, as these resources are not infinite. Money that is spent on futile health care could be better used for other things such as alleviating homelessness, treatment for substance use disorder, or perhaps ensuring that every American has a cell phone. What is often overlooked in this discussion is the burden of suffering.

When you are admitted to the hospital, you will often be asked your wishes as far as resuscitation. If you are a 46- year-old otherwise healthy person who is having a heart attack, the answer will almost always be to do everything possible to resuscitate you. If you are 102 years old with dementia and a massive stroke, the answer will probably be to allow natural death. In fact, if I’m the doctor for the latter, I would not ask the family their wishes; I would tell them that it would be medically futile to attempt resuscitation and would only prolong suffering.

In discussing the end of life, the trend over many decades has been toward less paternalism and more autonomy. We encourage living wills and we try to discuss these issues with patients ahead of time. When I was a medical student in an academic university, the discussion was never IF we were going to resuscitate, but what fluids, what size endotracheal tube, and how many medical students could practice procedures before we called the code. Now we are trying more to give the patients and families their opportunity to decide within the setting of their values.

One of the ethical dilemmas in medicine is the balance between autonomy and beneficence. In the United States, we greatly value autonomy in medical decision-making; your ability to make your own decisions about your life, including health care. Built into Western medicine is the idea of informed consent. I offer you medical options and you can choose to take a medication, undergo a procedure, or try your favorite essential oil. I inform you of the options, and make recommendations, but autonomy says that you get to decide if you prefer lavender or vanilla.

Beneficence is a stronger force in other cultures, but it is also ingrained in our medical culture. Beneficence is essentially when your clinician is deciding what is best for you. The opposite is maleficence, the act of committing harm, which every physician swears an oath not to do. If there was no beneficence in medicine, you could walk into your neighborhood pharmacy and get OxyContin, Adderall, Xanax, and a side of cocaine by request. I practice beneficence over autonomy regularly by telling patients that certain controlled substances are not in their best interest, or declining a patient’s request for an unnecessary CT scan because the risks of radiation outweigh potential benefits. It is also beneficence when I place a patient on a psychiatric hold because I feel that they are in imminent danger of harming themselves.

When discussing end of life care with patients, health-care professionals must balance these two ideas. Many providers are uncomfortable with these discussions, and often begin and end the discussion with, “Do you want everything done?”

Well, who doesn’t want everything done? The logical converse is putting someone in a corner to be ignored as they gasp for breath. In reality, there is plenty that can be done at the end of life. Medical school focuses on the diagnosis and treatment of disease, but often falls short in discussions of palliation of symptoms. I do not like the term “do not resuscitate (DNR)” as it implies that we are withholding care. In fact, what we are doing is changing to focus of care to allow natural death and palliation of pain and anxiety. We have many treatments available for symptoms at the end of life and I minimize the suffering of my dying patients.

What happens when the family and the provider are not on the same page? Just like most areas of human interaction, the key is communication. I was the chair of the bioethics committee at a community hospital for two years and the vast majority of ethics consultations were regarding end of life care. In almost all of these cases, the issue was resolved by compassionate, open communication. Physicians are often frustrated by patients and families who have unrealistic expectations. Unfortunately, we also put the burden on families in the name of autonomy. I have seen many families struggle with the decision of whether or not to attempt resuscitation for a loved one, and it is evident that they fear the guilt of making the wrong decision. I often then put that burden on myself and give them an opportunity to object by saying things such as, “resuscitation is unlikely to provide a meaningful recovery and likely to cause suffering so I recommend if she stops breathing or her heart stops that we allow a natural death.”

This often assuages the family’s guilt as I advise them what I think is best.

Since death is inevitable, the decision is really the balance between extending quality life and suffering. If I extend your life, but during that time you are unable to communicate and have to endure painful procedures, I have not really helped you. However, if those painful procedures will then return you to a life that you consider meaningful, I have done some good. Although I cannot see the future, I can predict the likelihood of a good outcome based on your prior health, function, and the nature of your current illness. All too often I see someone with severe dementia who is bed-bound with a feeding tube undergoing painful procedures that will inevitably only prolong suffering. Ethically, I think that is doing harm.

According to medical ethics, clinicians should not offer futile care. I see it happen in the name of autonomy or misguided fears of litigation. I do not offer feeding tubes to patients with dementia who stop eating because there is ample evidence that it does not prolong life and it does increase suffering. Those of us in healthcare need to remember that we are the experts and we should first do no harm. Those of you who are involved in these decisions need to ask your medical providers these difficult questions. Ask your physician, “If this were your mother, what would you do?”

Most of the deaths I see are predictable. As we age and deal with illness, we should not fear death, but plan for it. Death is a natural part of life, and will occur whether we are ready to accept it or not. Several studies have demonstrated that physicians are more likely to die at home and less likely to have aggressive surgical procedures at the end of life. Our patients should have the same consideration and be allowed a dignified death.

Speak with your family about your wishes and their wishes. If you have a family member with a serious chronic illness, don’t wait until you’re in the emergency department and frightened and someone is asking you if they should “do everything”.

We will all die some day and if we are prepared, we may be able to die well.

Complete Article HERE!

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10/9/17

De-Medicalizing Death

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By Jessica Nutik Zitter

There’s been an unexpected, and excellent, consequence to California’s new medical aid-in-dying law. For many terminally ill patients, immersion in the process of securing lethal drugs ultimately renders them unnecessary. How did this come about?

Passed by the California legislature in late 2015, the End of Life Option Act allows physicians to prescribe a lethal concoction of drugs to some patients with terminal illnesses who meet certain criteria. The law, commonly described as providing “medical aid in dying,” took effect on June 9, 2016. It stipulates only that the requesting patient be considered terminal (less than six months away from death), possess full decision-making capacity, and be physically able to self-administer the life-limiting drugs. Although the physician is obligated by law to inform the patient of alternative care options, such as psychological counseling or symptom management with palliative care services, there is no direct requirement that the physician arrange or provide them. In its barest form, the option can serve as a dispensary for life-ending medications.

California’s medical community was taken by surprise by the rapid passing of the law in late 2015. It came on the heels of the dramatic case of Brittany Maynard, a young woman with terminal brain cancer who elected to move from California to Oregon to access medical aid in dying under that state’s Death with Dignity Act. Hospital systems and physicians in California suddenly found themselves with an urgent need to rapidly formulate policies around this new right of patients. Some, such as the Catholic Health Systems, opted out on religious grounds. Others scrambled to put basic policies in place for patients who met inclusion criteria. And some institutions decided to put significant time and resources into supporting this new legal reality in the most comprehensive way possible.

One standout example is the University of California, Los Angeles (UCLA) Health Centers. After literally thousands of hours of discussion, the working group determined that the intake process for patients requesting medical aid in dying should be conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians. Dr. Neil Wenger, director of the UCLA Health Ethics Center, led the effort to create processes and infrastructure to respond to this law. “We wanted to be able to offer a service that doctors tend to gloss over,” he said, when asked why they chose to lead with talk therapy. The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

The intake questions explored goals of care, quality of life, and patients’ emotions around their impending deaths: Were they ready? What scared them? What made them anxious? Did they feel their lives were complete? What did they feel makes life meaningful? What decrements in quality of life are too great? What haven’t they said and to whom? Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

Ours is a culture that does not talk about death, even when it should be impossible to ignore. Despite the fact that 89 percent of people think that it is a doctor’s responsibility to discuss end-of-life care with their patients, in reality, only 17 percent of patients report having had such a conversation, according to a 2015 survey from the Henry J. Kaiser Family Foundation. As a doctor who practices both critical care and palliative care medicine, I have presided over thousands of deaths. Most of my patients have suffered with chronic illnesses for years: metastatic cancers, failing lungs, and progressive debilitation from dementia. And yet almost none of them have discussed their own death with their doctors, or even their families. Most have no idea that they are actually dying. In this culture that operates on a fantasy of immortality, with unrealistic promises made by television shows and advertisements, doctors see themselves as failures if they are unable to cure their patients. We physicians are trained to lead patients into battle after battle, into the next procedure or intervention, banking always on that magic pill or miracle cure.

This broad cultural unwillingness to acknowledge death results in a phenomenon I call the “End-of-Life Conveyor Belt,” where high-tech treatments are automatically attached to bodies as they progress through the stages of dying. As the baby boomers age and our treatment options blossom, more are being exposed to the suffering brought about by these protocols. The tremendous anxiety we see over loss of control is understandable. It is no wonder that people in many states have asked for, and finally won, the right to take back that control with a pill.

The effort by UCLA Health seems to be working. Placing highly trained psychologists and clinical social workers in the critical role of “first responder” to a patient’s request to hasten death has rendered many of these requests obsolete. In choosing this approach, UCLA is effectively “de-medicalizing” the experience of dying by prioritizing the need for deep reflection. In this way, the program provides patients with an option that doctors are not primarily trained for.

Patients requesting support to hasten their deaths are only a small subset of the population of the dying. They are in some ways canaries in a coal mine, their request for medical aid in dying is alerting us to the unmet needs of the wider population of dying patients. And what I am seeing is that our new legal responsibility to steward these patients responsibly through this rocky terrain will build practices and skills that will help all of those at the end of life.

Where goes California, thus goes the nation. California was the fourth state to legalize medical aid in dying and has since been followed by two more. And UCLA’s approach, with trained psychologists guiding patients through this tricky terrain, shows us the way. Let’s take advantage of this wave to take better care of all our seriously ill patients. And let’s make sure we give patients what they really need and hope that lethal drugs are always the last tool in the toolbox.

Complete Article HERE!

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10/6/17

When a ‘good death’ was often painful: euthanasia through the ages

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Today, a primary goal of both movements aimed at care of the dying – palliative care and euthanasia – is to eliminate suffering. These are underpinned by the idea that a good death is a painless death. But it wasn’t always so.

The term “euthanasia” is derived from the Greek for good death, but it only began to be used in a modern and familiar way in the late 19th century. For centuries in Western societies, “euthanasia” referred to a pious death blessed by God.

The means of achieving a good death was set out in the enormously popular ars moriendi (art of dying) guides that offered prayers, attitudes and actions intended to guide the dying towards salvation. This wasn’t necessarily a painless process. Far and away the most reproduced image of good dying was Christ’s crucifixion.

The pain that could accompany dying was seen as punishment for sin and ultimately redemptive: a chance to transcend the world and flesh through imitation of Christ’s suffering. It was also a test of the compassion and charity of friends, relatives and even strangers.

The Christian injunction to minister to suffering meant visiting and caring for the dying were seen as communal duties. Children as well as adults were expected to offer physical and moral support to those who were gravely ill.

Doctors did not typically attend the deathbed. They did not have an obvious role in the central spiritual business of dying, but nor were they particularly associated with the mitigation of suffering.

Indeed, in the pre-anaesthetic era, doctors were more likely to be associated with the infliction of pain. Surgery, of course, was excruciating, but other now infamous “heroic” remedies (such as blistering, excessive bleeding and the application of caustic chemicals to the skin) were based on the belief that pain had healing properties and involved doctors deliberately inducing it.

In the 19th century, pain began to be seen as a discrete and aberrant physiological phenomenon. Both dying and suffering were increasingly medicalised. Doctors gradually took over from the clergy and family as carers of the dying.

At the same time, the word “euthanasia” took on a new meaning. It began to refer to this new medical duty to assist the terminally ill – but not to hasten death.

In the wake of the mid-century revolution in anaesthetics and aided by innovations such as the hypodermic syringe, doctors began to “treat” the dying with painkillers as well as prayers.

In 1870, Samuel Williams, a Birmingham businessman and amateur philosopher, proposed a more definitive form of this new medical treatment for the terminally ill. In an essay called Euthanasia, published by the local Speculative Club, he wrote:

That in all cases of hopeless and painful illness, it should be the recognised duty of the medical attendant, whenever so desired by the patient, to administer chloroform or such other anaesthetic as may by-and-by supersede chloroform – so as to destroy the consciousness at once, and put the sufferer to a quick and painless death.

Williams sparked a debate that has waxed and waned but never gone away. But how had this come to look like a good way to die?

Changing meanings of pain

In 1901 psychologist and philosopher William James wrote of the “strange moral transformation” that had taken place regarding attitudes to pain:

It is not expected of a man that he should either endure it or inflict much of it, and to listen to the recital of cases of it makes our flesh creep morally as well as physically. The way in which our ancestors looked upon pain as an eternal ingredient of the world’s order, and both caused and suffered it as a matter-of-course proportion of their day’s work, fills us with amazement.

Historian Stephanie Snow observes that as anaesthetics and other methods of pain relief became available in the 19th century, people began to see pain – the experience but also the sight of it – as more damaging and demoralising.

A new generation of comfortably off Victorians who considered anaesthesia commonplace could no longer stomach physical suffering. Now pain was something that could not just be eliminated but struck as cruel, unusual and degrading: “an alien force which undermined man’s very humanity”.

Dying and suffering became things from which people, particularly children, should be shielded.

A modern paradox

Medical methods aimed at eliminating the pain of the dying process developed as the fear of death – a fear that for centuries dwelt on the post-mortem horrors of hell – began to centre on the horror that could precede it.

Paradoxically, this fear arose and gained momentum as most people in Western cultures became increasingly insulated from such suffering. As mortality declined, more people died in hospital under the care of specialists, and doctors’ ability to control pain advanced in ways previously unimaginable.

This very modern anxiety can be historically tracked from Williams’s 1870 proposal to the assisted dying bill soon to be debated in the Victorian parliament.

Our ancestors would be amazed.

Complete Article HERE!

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10/5/17

When life is coming to a close: three common myths about dying

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On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.

We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.

Myth 1: positive thinking can delay death

The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.

Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.

For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.

Myth 2: dying at home means a good death

The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.

The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.

It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.

Myth 3: pushing on with futile treatment can’t hurt

A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.

There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.

The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.

Complete Article HERE!

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10/1/17

When to Consider Hospice Care

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According to a new study, many people wait too long to get special end-of-life care

By Lauren F. Friedman

Many patients near the end of their lives wait too long to enter hospice care, reports a new study published in the Journal of the American Geriatrics Society.

People who put off hospice care—in which attempts to cure a disease are usually stopped and replaced with treatments just for pain and suffering—might spend months in and out of hospitals, with their families struggling to take care of them. Hospice is specifically designed to address such issues with drugs and other interventions, which can increase patients’ quality of life toward the end of life.

“At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, M.D., a professor of medicine, epidemiology, and investigative medicine, and the Humana Foundation professor of geriatric medicine, at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”

For nearly 16 years, Gill and a team of researchers from the School of Medicine at Yale University followed 754 people who were all over 70 years old when the study began. Even though more than 40 percent of the 562 patients who died during the study entered hospice care during the last year of their lives, the median time spent in hospice was less than two weeks.

Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.

Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”

Here’s what you need to know about hospice care, and how to know when it’s time to begin considering it, for yourself or a loved one

What Is Hospice Care?

Hospice is a type of end-of-life care where the focus shifts from medical interventions aimed at a cure to palliative care, in which comfort and support for patients and their families are the main goals. It generally includes medical and nursing care as well as counseling and social services. 

According to the National Hospice and Palliative Care Organization, a specialized team—working in a patient’s home, a nursing home, or a hospice facility—has been trained to treat “all types of physical and emotional symptoms that cause pain, discomfort and distress.”

Hospice has been covered by Medicare since 1982 (though it has become more widely used only recently).

To initiate the hospice benefit, two physicians (or other healthcare providers) have to certify that a patient is terminally ill with less than six months to live—something that can be difficult to predict in many cases, say Meier and Gill. Patients can and do leave hospice at any time, because their condition stabilizes, for example, or because they want to pursue curative treatments again. Hospice care can also be extended beyond six months.

“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”

And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.

Yet the persistent misconceptions about hospice, says Gill, may be part of what keep people from seeking it out sooner.

When Is It the Right Time for Hospice?

For people with terminal conditions (which includes not only some cancers but also dementia, terminal heart disease, lung disease, frailty, and more), there should be an ongoing discussion taking place with their doctor about their goals and priorities, says Gill—ideally long before hospice is being broached.

“Often patients will say ‘I’m more interested in the quality rather than the quantity of my remaining life,’” he says, and that can help inform future discussions about end-of-life care.

But if you have not already discussed the possibility of hospice with a doctor, either for yourself or a loved one, there are two key signs that suggest it might be time to broach the topic for someone nearing the end of life, Meier says.

First, if a patient is having increasing difficulty taking care of themselves and struggling with basic tasks such as walking, getting out of a chair, bathing, dressing, and using the toilet, hospice care is designed to help with all of those things.

Second, symptoms such as severe pain, shortness of breath, hopelessness, depression, and profound fatigue are all treatable in hospice, says Meier. In fact, “most of them can be improved or eliminated,” she says.

In the end, “a patient’s trajectory is most important,” says Gill. “In terms of daily functioning, are they heading downhill as opposed to being relatively stable?”

These conversations can be difficult for patients, their families, and their doctors—which is why people often put them off until the last moment, sometimes sacrificing quality time at the end of life for dubious interventions or unnecessary hospitalization.

But the benefits to considering hospice care sooner are clear. A patient with terminal cancer, featured in a 2014 Consumer Reports article, called entering a hospice program—nearly nine months before he died—“one of the best things that’s happened to me in the last I don’t know how many years.”

“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.” 

For more information, see Consumer Reports’ guide to caregiving and end-of-life care.

Complete Article HERE!

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09/27/17

The Brutal Truth Of Living With A Terminal Illness

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Brought to you by Stop The Horror
Stop The Horror is a five-minute short film that confronts viewers with a harrowing retelling of the true events surrounding one man’s traumatic death.

Kass Hall is a law student with a background in art and design; she lives with her husband and their pug called Elvis. She describes herself as a sister, a daughter, an aunty and a friend. 

She has been living with cancer for 27 years.

“I’m getting good at defying the odds, but I’ll never be in remission,” Kass says. “I’ll always be under my oncologist and surgeon’s eagle eyes, and I know that each hurdle, big or small, is a hurdle closer to the finish line.”

Impending death is not the kind of thing you adjust to. Despite the number of times she’s come close, Kass, now 39, is frank about being scared. She is under no illusions about what dying is like — she has seen “many, many friends, from children to older people, dying slowly and painfully.”

“I’ve been in the room in the final moments of life, and though we do our best to make people ‘comfortable’, it’s a situation I do not want to find myself in — for my own sake and that of those who love me,” she says.

She hopes that finish line isn’t soon. But in the event that it is, she wants a say in drawing that line.

This is how Kass has come to be an advocate for voluntary assisted dying legislation — her experience leaves her pretty uniquely placed to clap back at people opposed to it. With new assisted dying legislation proposed in Victoria at the moment, now is a particularly pressing time to persuade people of the bill’s importance.

“I have always liked the idea that, when I reach ‘my line’, I could choose to end my own pain. Watching someone you love die is one of the worst experiences a human can endure, and I imagine being the person dying is even worse.”

It’s an experience explored in the recently released film, Stop The Horror. A graphic five-minute short directed by Justin Kurzel, the film tells the true story of a man who dies over a period of three weeks, exploring what he and his family are forced to deal with.

Getting Diagnosed

Kass’s first diagnosis was in 1990, when she was twelve. The kind of cancer she has is incredibly rare, and was hard to pin down for a long time — as she wryly puts it, “what they thought it was then is not what they think it is now”.

That first diagnosis led to surgery and chemotherapy. On five separate occasions, her parents were called to the hospital to say goodbye. And yet, against all odds, Kass survived, though not without complications. “At that time I lost part of my stomach and duodenum [the first section of the small intestine],” she says. “The chemo left me infertile and with a heart condition, though thankfully my heart has remained strong.”

These complications have been multiplying steadily ever since. In 2000, Kass lost a kidney. In 2008, her thyroid. In 2011, the cancer returned to her stomach and liver. It was only in 2012 that her doctors discovered she had a genetic defect that was causing the tumours to return.

That was the moment, Kass says, when realisation hit. “This disease was — barring the unforeseen — what would kill me”.

Here’s the cruel thing about this genetic defect: in addition to all but guaranteeing the cancer’s return, it makes Kass ineligible for an organ transplant. And while so far it’s been possible to combat the resurgence of tumours with surgery, she’s keenly aware that things can’t continue this way forever.

“There’s going to come a time where surgery is no longer an option, and that’s when I start the slow process of dying.”

“The idea of dying anytime soon is not one I am comfortable with,” she says, “but who is, though?” She’s coming up on her 40th birthday in January, a milestone her oncologist has been telling her for years would be a “great outcome”.

Why Voluntary Assisted Dying Legislation Matters

Assisted dying has always been controversial, often for reasons Kass is keen to see us move past. Concerns about younger people — not children, but adults in their late teens and early twenties — having access to the option of assisted dying are, to Kass’s mind, utterly dismissive of terminally ill young people’s experience.

“There is no difference in older people and younger people making this decision,” she says. “If anything, for younger people the decision is harder because we think about what we may miss out on — weddings, children, travel.”

Kass says arguments that say young people with terminal illness don’t have the necessary perspective or clarity to decide to end their lives “seek to debase a person’s autonomy and thought process.”

“It’s designed to second guess a person. No one has the right to do that. Anyone who said that to me would probably not like the response they get from me.”

As for those who argue that choosing to die is a selfish act, Kass says her response “probably isn’t fit to print”.

“What I can say is that what other people think is not my problem. They are not living my life, they’re not walking in my shoes. Everyone has an opinion, but my life deals in facts. What others think about my choices, especially if they’ve never experienced my situation, is of zero consequence to me”.

Some of the most legitimate and important critiques of voluntary assisted dying legislation, though, come from people who have experienced Kass’s situation, or situations like it. These campaigns are run by people with terminal illness or life-threatening disabilities who are concerned that assisted dying legislation will needlessly kill many people through a subtle combination of pressures. Things like, for example, the feeling of being a burden on close family or medical services.

These are arguments Kass is willing to engage on — she says she’s aware of and understands the campaign in question, but thinks the legislation proposed by the Victorian Government includes adequate safeguards, including a multi-step process she hopes will catch any instance of family or external pressure.

“To my mind,” she says, “that is why patient autonomy is the key. At the end of the day, what family members think and what their needs are is not what this is about — it is and should always be about the primary patient. If the primary patient has not requested and been through the voluntary assisted dying process, then it shouldn’t be available.”

“And any family member that puts any pressure on a person who is dealing with illness or disability should find the map to hell and go there. There are so many people in the disability community and those with long term illness who have so much to contribute and who are outstanding members of society. Having an illness or disability doesn’t diminish us as people.”

Reaching The Finish Line

In Kass’s case, she knows her husband will support her decision if she reaches her line. She hopes that won’t be soon — she wants to grow old with her husband, see her nieces and nephews grow up, have a full legal career. For the time being, she’s optimistic.

But even on good days, the line is there, and Kass says that when she hits it, she has “no hesitations” about what she’ll do.

“I have no interest in suffering unnecessarily,” she says. “It will be my decision.”

“I respect that this won’t be for everyone. I just feel that a choice for those of us who do seek to end our own suffering should be given to us. We all have our own paths in life, and should have as much choice made available to us as possible.”

Complete Article HERE!

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