Tag: End of Life Care

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For Patients With Heart Failure, Little Guidance as Death Nears

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.

By GINA KOLATA

[R]icky 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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What is Respite Care?

By SeniorAdvisor.com Staff

[T]he essential meaning of respite care is to support the caregivers via temporary institutional care for their loved ones. Respite care can be provided to a dependent, disabled, or elderly person. It is also known as short-term care and gives you (the caregiver) the opportunity to get a break from your caregiving role while ensuring your loved one stays on track with their normal routine.

Respite care may be provided in short hourly increments, days, or even longer periods of time and also depends on your loved one’s specific needs, your own needs, as well as on the available services in your area and their price points.

Benefits of Respite Care

Respite care enables the caregiver to continue with his or her caring role for a longer period of time and help prevent burnout. It is designed to help families, by giving the caregiver time to slow down and focus on one’s physical and mental health. It may also be given informally by family members, friends, neighbors, or by formal services.

Some studies have shown that respite care helps sustain caregivers’ health and well being, reduces the possibility of neglect and abuse, delays, and avoids out-of-home placements. An additional benefit of respite care is the fact that it helps sustain marriages by reducing the likelihood of divorce.
Types of Respite Care

In-home respite care provides caregiving to the individual at their home.

Attends to the senior’s fundamental self help needs, usually provided by family members.
Assists the family on enabling the senior with development activities to be at home.
Relieves family members from the constant and heavy responsibility of providing care.
Gives appropriate supervision and care to protect the senior’s safety if a family member is not present.

Adult day center respite care provides daily care via licensed facilities and is predominantly used by caregivers who work during the day and need a place for their loved ones to socialize and receive care.

Specialized facility respite care provides highly effective and specialized care (such as for dementia or Alzheimer’s) at a licensed facility.

Emergency respite care provides help and care on an emergency basis. Many home care agencies, help centers, adult day care centers and respite care facilities offer this service.

Therapeutic respite care provides services for seniors and adults, mostly during business hours, but sometimes 24 hours a day. Therapeutic respite care facilities usually care for designated clients only and are not related to the family support centers.

Informal respite care is care given by a family member, relative, friend, or volunteer. It serves to allow the caregiver a brief break to run errands or simply be removed from the current caregiving role. This form of care may also be used during special events.

If you are a primary caregiver, take time to ensure that you are also mentally, emotionally, and physically healthy. Although getting respite care may feel like a daunting task plagued with guilt, it can be a good option to temporarily remove yourself from the situation to regain a renewed sense of well-being for you and your loved one.

Complete Article ↪HERE↩!

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What It’s Like to Learn You’re Going to Die

Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

Complete Article ↪HERE↩!

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Don’t want ‘heroic measures’ as part of your end-of-life care? Have the conversation

intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor

By Allison Bond

[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.

One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.

Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.

“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.

A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.

After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.

We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?

Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.

Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.

There’s got to be a way to close these gaps.

The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.

It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.

Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.

There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.

Complete Article ↪HERE↩!

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A Checklist Before Dying

By

[I]n early 2015, my mom was in a car wreck. She sustained extensive injuries and died two weeks later. I was 35 at the time, surrounded by chaos, and had no idea what I was doing.

You hate to look on the bright side of life-altering tragedy, but I’m still so grateful to my mom for having her affairs in order. Because her accident was so sudden, it took a few days to locate her end-of-life documents. Once we did, it felt like there was a shift in my brain chemistry. We now had guidelines to help us respond to this terrible, traumatic event.

A lot of people believe it’s too difficult or macabre to think about, much less plan for, your own death. But confusion, exhaustion, and terror are the norm in the wake of enormous loss. Planning ahead helps reduce your family’s stress when they’re already in their own personal hell.

If you have a contentious relationship with your family of origin, it’s extra important for you to draw up wills and other relevant legal documents. If something terrible were to happen to you, somebody you don’t like or respect but happen to share blood with may have more say than the people who are actually important to you. Paperwork can help prevent that.

Here is an overview of how to prepare for the (inevitable) worst:

Your Last Will and Testament

Most of us learn about wills from television, though I’m not sure there’s actually ever been a dramatic scene immediately after a funeral where a lawyer sits down with a bunch of people and parcels out the deceased’s belongings.

A will serves two functions:

  1. To appoint an executor of the estate
  2. To express the deceased’s wishes about distribution of assets

It doesn’t matter how much or how little a person had in this world. When they die, their assets and debts become the property of “the Estate of [Deceased Person].” An executor of an estate is the person put in charge of making sure the estate is handled properly—which does sometimes come down to parceling out the deceased’s belongings.

You should know that, even if you say “please leave all my money to these people or this organization,” if you die with a bunch of debt, it’s likely the debt will have priority over your wishes.

A durable power of attorney

This document outlines how incapacitated you have to be to let some (specific) person handle your money. Even if you don’t want anyone else to touch your money, consider the logistics; setting up a power of attorney lets someone else sign checks to pay your light bill or rent, for example, without technically committing fraud. (We always forget about the little stuff.)

You have to specifically appoint a person for this role. Once you die this document ceases to be of any value and the executor of your estate takes over.

Your medical directives

This document lays out the manner in which you wish to live vs. do not wish to live. These documents vary massively by state. In general, states with Right to Die laws will have more much more detailed requirements. If you draft a medical directive in one state and then wind up becoming grievously ill or injured in another state, they should still honor the spirit (if not the letter) of this document.

I did mine in Oregon. It’s a three-page list of yes/no scenarios. You have to consider your own mortality, but other than that, it’s really not that daunting. All you have to do is express what you’d like to happen to you, should the worst happen.

You have to specifically appoint a person to execute your medical directives as well. A doctor will not look at this document and enforce it based on their own judgments about your condition. So make sure the person you appoint to do this is someone who understands your wishes and respects your values, because this document will empower them to either enforce or override your choices.

An estate attorney

A will, a durable power of attorney, and a medical directive should all be drawn up with a lawyer. The people that specialize in this area of the law are called estate attorneys. The estate attorney should be able to tell you upfront how much it will cost to draw these documents up and a lot of times you can work out a payment plan with them.

This attorney will keep a copy of each of these documents in their files. You should also keep copies in a safe place that other people know about and can access should you be in a medical crisis and unable to communicate. It may also be wise to give copies to the people who have appointed roles in your end-of-life documents.

Life insurance

You should have life insurance if you have any outstanding debts or dependents. My understanding is that your life insurance should equal your debt + five years of your salary + your child’s/children’s estimated college tuition, but do your own research on what’s best for you—and do some research on which of your debts are forgiven in death and which are not.

If you have no major debt and no dependents, you could skip the life insurance part, but keep in mind that life insurance beneficiaries can also be parents or other relatives, all of whom could probably use the money—especially if they are anticipating support in their retirement years and/or paying for the cost of your funeral.

Love letters

Any final lovely words you want to write to the wonderful people in your life? Better yet, any petty stuff you want to make sure you get the legit last word on? Write it in a letter, seal it in an envelope and keep with the other documents.

Lists of accounts, important contacts, assets and debts

Accounts: A list of all your credit cards, checking and savings accounts, including where they’re held and branch information if necessary.

Important contact info: The attorney who helped draft your legal documents, your doctor, your health insurance, your pet’s veterinarian, etc. If someone had to suddenly take over your whole life, what do they need to know?

Assets: Retirement accounts, a 401(k) program at your work, any property you might own (with the mortgage holder listed), savings bonds, certificates of deposit, etc. You can leave out the account numbers if you have privacy concerns; what you’re really doing is making a road map for whoever will be handling your affairs.

Debts and bills: Student loans, credit cards, mortgages, auto loans, etc. Don’t forget your rent, utilities, subscriptions, child support, memberships, and donations that auto-renew. List every single thing that bills out of your account monthly, quarterly, annually.

Update this information every time you change your clocks and put the revision date at the top. (Also, change your smoke alarm batteries while you’re at it.)

Funeral preparations and preferences

You can get as specific as you want with this, but at the bare minimum let people know if you want a burial or cremation and where you want your remains to go. (Especially if you come from a large family or if there are any religious or cultural differences to consider.)

Obituary draft

Obituaries have to be filed for a few reasons. Many states have public disclosure laws for debt collection that require an obituary. Also, people might want to come to your funeral (or at least know you died) who aren’t in your immediate social and family circles. Draft a super basic obituary that includes where you were born along with the names of your parents, siblings, children, etc. A few broad strokes about your life, where you went to school, worked, what you enjoyed doing, etc.

It’s going to be painful for your loved ones to write about you in the past tense, so giving them a rough draft can be very helpful—especially because the obituary usually has to be written immediately  after a person’s death.

Make sure people know where this stuff is!

Keep it somewhere secure. But let the right people know how to access it. A fireproof safe in your house? Make sure someone knows where the keys are. A safe deposit box? Make sure someone else has access to it. In a folder on your laptop labeled “Death Prep?” You’d better give someone else the password and the file path. Under the floorboards? Whatever, just make sure people can find it and have access to it if you are suddenly incapacitated.

Final note

The less mess you leave for someone to clean up, the less you’ll complicate the grief for people who love you. All the secrets you have stashed around your life? Someone has to clean that up. Know that the dead have zero privacy; all of your porn, medical history and drug habits will be 100 percent somebody else’s business now. Appoint an executor who has some chill, and good luck in the next plane of existence.

Disclaimer: I’m not a lawyer, nor a financial advisor. I’m terrible at math and I hate dealing with people. This is not professional advice and you should definitely pay an actual grown-up $200/hour to explain how the basic tenets of our society functions because your pain, fear and confusion is the grease that keeps the ruthless machine of capitalism churning. Above all, do not sue me if you mess up your own life!

Complete Article ↪HERE↩!

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The Symptoms of Protracted Dying

By SARA MANNING PESKIN, M.D.

[G]eraldine was warmly opinionated and, along with her husband, she’d raised her four daughters to be the same.

When work settled and time allowed, she melted into the couch next to any of her children who were home and turned on the Hallmark channel. If a movie showed people who couldn’t care for themselves, she would remark, “I don’t want to live like that,” or “if that’s me, don’t bother doing all that.”

On May 25, a clot blocked a blood vessel in Geraldine’s heart. Her husband performed CPR. She was whisked to the hospital, where her heart survived, but lack of oxygen launched her brain into uncontrollable seizures. At age 56, her melodic Irish accent was silenced.

Her lips sagged around a breathing tube when I met her three weeks later. Her limbs lay wherever we put them. Kinked gray hair stood in all directions from her scalp, pushed aside by electrodes that recorded brain activity.

In the small conference room in our neuro intensive care unit, we discussed Geraldine’s prognosis with her family.

“We can place a long-term breathing tube in her neck and a feeding tube in her stomach,” I said, “but there are no cases in the medical literature of someone like her living independently again. The best we could hope for is a life of near-complete dependence.”

“When we first came to the hospital, doctors told us my mom might be brain-dead,” one of Geraldine’s daughters countered. “Now, she takes breaths on her own sometimes. She’s already improving.”

Just as Geraldine was stubborn and exceptional in life, her family believed she would be exceptional in beating her prognosis.

“It might be different if my mom was 70 or 80,” her daughter went on, “but she’s only 56.”

For Geraldine’s family, the immediate fear of watching her die outweighed the unfamiliar pain of sustaining her on machines and watching her disappear in a long-term care facility.

Our medical team had seen hundreds of people like Geraldine, most of whom returned to the hospital month after month to manage complications of immobility. Sparse cases of recoveries were overwhelmed by painful, expensive, drawn-out deaths, ones we would never wish for ourselves or our own families.

But for Geraldine’s family, every decision was new. For them, nobody was like Geraldine.

In every other part of medicine, doctors make recommendations for medications, lifestyle changes and surgeries. We don’t offer cancer patients six different chemotherapy regimens and ask them to weigh the pros and cons. Yet when it comes to end-of-life decisions, doctors are terrified of violating patient autonomy. We are scared of our own medical opinions.

Instead of saying, “I recommend…,” we often offer a platter of life-prolonging measures, most of which are unlikely to improve a patient’s quality of life, but which offer the possibility of hope. The patient’s heart will still beat. Her personality will be gone, but her chest will still rise and collapse. Families see an opportunity for loss to be delayed, perhaps even dodged. Then we are surprised when they take us up on the offer to prolong dying.

“I think she would want more time to try and recover,” Geraldine’s daughter said.

So we kept Geraldine alive. A plastic breathing tube sprouted from her neck and a feeding tube with peach-colored formula buried itself in her stomach.

In the hospital, Geraldine’s family learned the common complications of immobility: infection, blood clots and bedsores.

When the infection started, a fever sounded the alarm. We counted the possible causes. Geraldine had a breathing tube in her windpipe, a feeding tube in her stomach and an IV line in her neck, each an access road for bacteria. Lying in bed put her at risk for pneumonia and urinary tract infections. Like mosquitoes in standing water, infections proliferate when the body is still.

Geraldine’s blood clots weren’t a surprise. Medical students are inculcated with the famous triad of conditions that predispose patients to clots, and Geraldine had all of them. Her body was inflamed and torn from the heart attack, infections and procedures that caused her blood vessels to release molecules that helped blood to clot. Lying in a hospital bed, not moving anything unless it was moved, her circulation slowed. Pools of static blood dried into a thick paste in her blood vessels.

Thanks to aggressive nursing care, when Geraldine developed a bedsore it was managed at an early stage. But the term “bedsore” is an understated euphemism. It recalls the annoyance of a cold sore or the tenderness of muscles after the gym. The grotesque image of bone pressing through skin is hidden.

In people who are immobilized, bedsores develop under bony prominences like the heels and the skull. At first, the skin becomes red. If the bedsore progresses, the skin’s outer layer, then the inner layer, breaks down. Finally, in the most severe stage, bone, muscles and tendons are exposed. The entire process can happen in just a few days.

Sixty days after her heart attack, Geraldine was stable enough to leave the I.C.U. She was in a persistent vegetative state — unresponsive to external stimuli. She opened her eyes, as if she were about to say something, but nothing ever came out. Her gaze roved around the room. An ambulance took her to a long term care facility, where she was dependent on machines and people.

“When you first hear someone you love is sick, you think it’s a short term thing,” her daughter told me over the phone a month later. “It’s adjusting to the long term aspect that’s hard.” Geraldine’s daughter woke up at 5 a.m. every day to spend time with her mom before work.

“I think it’s more of a disappointment for my dad,” she said. “He told us that if he ever gets sick, he doesn’t want any of this.”

Geraldine’s family lived between hope and guilt, with the weight of each side in flux. “If my mom knew what we were doing right now, she’d probably be mad at us,” her daughter reflected a few weeks ago.

Yet in the same breath, her voice rose and she said: “My mom’s a fighter, so I think she would be happy with us giving her a shot. We’re hoping for this miraculous turnaround.”

It did not come. Geraldine died of sepsis earlier this month, after more than four months of care.

“People don’t know what they’re in for,” Geraldine’s daughter reflected after the funeral. “It hurt all of us to see her like that.”

In the final days of Geraldine’s life, a doctor asked if the family of another patient in the I.C.U. could visit Geraldine to see what prolonged dying looked like. Geraldine’s family was kind enough to agree.

The visiting family chose to transition their loved one to hospice care.

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Alzheimers Q&A: What is an AIM Program?

[T]he 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!