10/15/17

Alzheimers Q&A: What is an AIM Program?

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The Advance Illness Management (AIM) program/model was developed to provide home-based palliative care and management of transitional care for individuals with advance chronic disease. The AIM program benefits those who are not yet ready for hospice or have refused to elect a hospice program.

For the most part, AIM is essentially a specialized home care program. It is not hospice. Whereas traditional home care services promote recovery and rehabilitation and the individual is admitted and discharged quickly, the AIM program promotes transition between end-of-life care for individuals with late-stage illness. Moreover, AIM focuses on symptom management and comfort.

Traditional home health services are offered to individuals with a brief illness or debilitating circumstances that are not considered terminal. Palliative home health services are provided to those facing terminal illness who wish to continue life-extending or curative treatment or need more time to explore options. The AIM program manages the needs of individuals facing terminal illness. A person can transition into hospice care if and when that decision is made, with no change in the consistent caregiver.

In order to participate in an AIM program, individuals must satisfy at least two of the following criteria:

• Advance cardiac disease, end-stage pulmonary disease, end-stage liver disease, end-stage Alzheimer’s or dementia, other end-stage diagnoses or advanced debility and decline.

• Non-palliative treatment of primary disease process is failing or losing effectiveness, such as when cancer chemotherapy is ineffective.

• Individual has poorly controlled pain or other end-of-life symptoms.

• A decline in functional and or nutritional status in the past 30 days.

• The person is eligible for hospice but refuses enrollment.

The AIM palliative home health visits are less frequent than hospice visits, yet the person and his or her family are provided similar services as those received through hospice from the same qualified and compassionate staff, while they continue to see curative treatments. And, with the AIM program, if at some point the individual and family decide to utilize the services of hospice care, they have the comfort of knowing that their team of health care providers will remain the same.

For more information about the services provided by AIM, check with your physician or health care provider.

Complete Article HERE!

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10/14/17

New study looks at end-of-life decision making for people with intellectual disabilities

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by Bert Gambini

 
A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

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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10/8/17

Many kids dying of cancer get intense care at end of life

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By Lisa Rapaport

Nearly two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.

Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.

“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.

“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”

Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.

For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.

Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.

Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.

Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.

One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.

“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.

“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.

Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.

“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.

With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.

“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.

“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.

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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