11/18/17

For Patients With Heart Failure, Little Guidance as Death Nears

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Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.

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Ricky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

Complete Article HERE!

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10/25/17

Dying a good death—what we need from drugs that are meant to end life

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There are a few drugs that can end life, and how we want to die should be considered.

by And

Generally speaking, health care is aimed at relieving pain and suffering. This is also the motivation behind euthanasia – the ending of one’s own life, usually in the case of terminal illness characterised by excruciating pain.

There has been debate in Victoria about the drugs that should be used to end life if euthanasia is legalised. So which medications can we ensure would facilitate the best, medically-supervised death?

Medicine as poison

When it comes to the question of which medicines can, or even are meant to, kill us, the most important thing to remember is the old adage:

“The dose makes the poison.”

This concept is one on which the whole discipline of toxicology and medicines is founded. This is the meaning of the well-known symbol of the snake, wound around the bowl of Hygeia (the Greek goddess of health), representing medicine, which you see in pharmacies and medical centres around the world. The intertwining of poison and is a longstanding concept in the therapeutic use of medicines.

This is a very intricate science, and the reason we conduct clinical research. We need to trial different doses of new drugs to meticulously establish a safe but effective threshold for use.

In more practical terms, this means too much of any medicine can cause harm. Take, for example, the humble paracetamol. When taken following correct guidelines, it is a perfectly safe, effective pain killer used by millions of people worldwide. But taken in excessive quantities, it can cause irreparable liver damage, and if the patient is not given an antidote in a hospital, could lead to death.

What drugs are used in assisted dying?

The group of drugs most commonly used to end life is called the barbiturates. They cause the activity of the brain and nervous system to slow down. These drugs, used medicinally in small doses, can be taken short-term to treat insomnia, or seizures in emergencies. In different doses and administration techniques, these preparations can also be used as anaesthesia, to make us sleep through surgery.

An overdose of barbiturates is fatal. A large dose will effectively make the brain slow down to a point where it stops telling the body to keep the respiratory system working, and breathing ceases.

Both secobarbital capsules and pentobarbital (usually known as the brand name, Nembutal) liquid – (not to be mistaken for epilepsy medication phenobarbital) have been used either alone or in combination for physician-assisted suicide or euthanasia. They are also used in injectable forms for animal euthanasia.

These two products are tried and tested, have the advantage of years of use with the benefit of knowing the exact dose range needed, and with few adverse effects reported (such as unexpected pain, drawn-out death or failed death).

Their safety and efficacy in inducing a peaceful, swift and uneventful death has been proven around the world. They are the preferred drugs in the Netherlands, Belgium, Switzerland and some USA states where euthanasia is legal.

Other options exist, whether in combination or alone, but have limited evidence of use in euthanasia. Some drugs that cause excessive muscle relaxation and respiratory distress can end life, as can some pain killers commonly used in palliative care.

Drugs can also be used that fatally lower , cause heart attack, or block messages from the brain to the muscles, causing paralysis.

While all of these drugs are legally available in Australia, they could cause a long, protracted , with many more side effects that could cause distress and suffering at the end of life. Nembutal and its relatives are less likely to do so, with greater evidence from international practices than any other drugs that can end life.

The ‘best’ death

In Australia, Nembutal and secobarbital can be used for animals, but are illegal for human use. This makes implementation of the newly proposed euthanasia law in Victoria slightly more difficult. The proposed legislation does not seek to legalise the use of Nembutal and its relatives – but suggests a “drug cocktail” be concocted by a compounding pharmacist.

The Victorian government has reportedly approached Monash University’s pharmacy department to research the kind of pill that could be developed if the legislation passes. Therefore, no final description of this product has been released.

Some have suggested the mixture will be in powder form made with to induce a coma and eventually cause respiratory arrest. It may also use sedatives and muscle relaxants, a drug to slow down the heart, and an anti-epileptic to prevent seizure and induce relaxation of muscles. The constituents and doses are yet to be determined.

It’s difficult at this early stage to predict how this concoction would work and whether it would be easier or safer to use than drugs already tried and tested. This proposed product would need to be tested and results compared, as all are.

What is needed is a or a mixture of drugs that produce a painless, relatively quick and peaceful passing. We do not wish to see further suffering in the form of seizures, prolonged distress and pain. If no solution is certain, it would be wise to fall back on simply legalising what is already tried and tested.

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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10/5/17

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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10/3/17

The Painful Choices End-of-Life Brings for the Caregiver

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by Kay Bransford

Caught off guard

The final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.

Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.

I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.

Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.

In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.

What’s wrong with dad?

In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.

The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.

Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.

Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.

Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.

Deciding what comes next

Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.

Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.

Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.

It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.

We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.

We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.

Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.

For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.

Living with the loss

The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.

I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.

My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.

During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.

I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Helping mom adjust

We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.

Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.

I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.

We needed a community with:

  • scheduled activities that my mom would enjoy
  • active reminders about upcoming activities or events so my mom wouldn’t miss out
  • a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
  • community cues to help mom recognize how to get to her apartment

Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.

Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.

We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.

It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.

Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.

She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.

Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.

Saying goodbye to mom

In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.

Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.

When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.

When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.

The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.

She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.

It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.

Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.

When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.

Learning to live with my decisions

If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.

A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.

A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.

Life after caregiving

While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.

This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.

After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.

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