04/19/17

At the End of Life, a Way to Go Gentle

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While confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!

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04/13/17

Medical advancements have changed the way we die and view the process of death

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The process of dying is a more complicated issue today because of advancements in life-sustaining technologies

“Due to innovations in medical technology, our perception of death has changed as we are more able to alter the natural path of the human life.”

By Yasmine Mian

How we die is a profoundly personal journey.

As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal theme that does not discriminate against anyone, no matter their age.

Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.

Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.

Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.

Universities like ASU offer courses exploring the cultural and religious aspects of death and dying. 

While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.

Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.

“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said. 

However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.

The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.

When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.

However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.

Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.

However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.

While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.

In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense. 

Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook. 

But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.

The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.

However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common. 

We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic. 


 

Complete Article HERE!

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03/23/17

A Death in the I.C.U.

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On a recent night, I watched a man with terminal cancer die in the intensive care unit.

He was intubated. Meds ran through intravenous catheters in his bruised arms. Outside his room, alarms beeped. On the face of it, this death was precisely the kind we are told to avoid. But I think that for him, the I.C.U. was actually a good place to be.

My patient had thought he was healthy until a few months before, when the cough that wouldn’t go away turned out to be cancer in his lungs. Chemo slowed it down, but there would be no cure, his doctors told him. He was 75, and the cancer had spread to his lymph nodes and bones.

But he was living at home, eating the foods he liked, chatting with his wife. He went along that way until one day he spiked a fever and his cough worsened. The doctors in the emergency room sent him up to the I.C.U. And there we were, standing around the bed, as his breath grew ragged, wondering whether we could make him better.

Maybe with a few days of antibiotics, we could get him back home. Maybe. If we were to push ahead, with the hope that he would improve, he would need to be intubated. I turned to his wife.

She knew that he didn’t want to linger in a machine-enabled purgatory. But he would choose to undergo our interventions if there was a chance he could get well enough to return home, to be with her and the family, for whatever time he had remaining. We would take the chance.

I called the anesthesiologists. My patient’s wife held his hand as they sedated and paralyzed him so that they could place a breathing tube down his throat.

And with that, a man with a terminal illness ended up in the I.C.U., intubated, maybe dying. We know the numbers. More than 80 percent of people say they would prefer to die at home, and yet more than half of them die here in the hospital, surrounded by noise and strange smells and tubes and machines.

It’s a message that I continue to hear: Dying in an I.C.U. is a bad death that occurs when communication and understanding break down, while dying at home is a success. There is some truth to this. I have seen many men and women, bald and withered and suffering, tethered to machines that serve only to prolong an end that is inevitable.

But to cast an I.C.U. death as the negative outcome of poor communication and decision-making is too simple. Intensive care at the end of life is very often fluid, our treatments and decisions nuanced. Consider another patient, a frail man in his 80s, also with lung cancer, whose oncologist had told him he had maybe a month, at most. As his breathing grew more labored, he ended up in the I.C.U. We could not cure him — his doctors knew that, and he did, too. But perhaps we could help. We supported his breathing with high levels of oxygen, while we drained the fluid around his lung and gave him intravenous diuretics. We subjected him to the stress of the I.C.U. and a procedure, yes, but his breathing improved, not enough for him to go home again, but enough for him to be able to return to the general medical floor of the hospital. Some might argue that his story exemplifies what is wrong with our system, an example of an invasive, resource-intensive intervention in the last few weeks of life. And yet, seeing him sitting up in bed and able to take a deep breath, I considered his treatment a success — even if it bought him only days.

A procedure or an I.C.U. stay at the end of life can be a gamble. There are times when it ends the way we hope, with a treated infection, a return home. But there are times when it does not, and often, we do not know what is possible from the start. So we explain this uncertainty, and we continue to evaluate new treatment decisions with patients and their families in the context of their goals. And when the burden of disease grows too great, with further interventions more likely to cause harm than benefit, our focus can shift toward comfort. Navigating that shift is part of our training, too.

There my 75-year-old patient lay, intubated in the I.C.U. At first, the antibiotics seemed to be working, and he seemed to be getting a little bit better. We told his wife this, and she looked hopeful. But a few days passed, and then a week. He could not breathe without the ventilator. In a small conference room off the I.C.U., we told his wife that we were sorry. We had treated the pneumonia but because of the cancer, her husband’s lungs were too weak to recover. He was not going to get home. But we could maintain his dignity here, in the I.C.U., as he died. We promised her.

That night, we shut off the monitors inside his room. The screens went dark. My patient’s nurse increased the dose of his morphine drip. The respiratory therapist stepped in and removed the breathing tube. My patient breathed quickly for a moment, a little gasp, and then the morphine hit him and his breaths quieted.

We brought in his wife and two children, who gathered by the bedside. We slid shut the glass doors. From outside the room, I watched them stand there. I watched the monitors that remained on outside the room, holding my own breath as my patient’s heart rate slowed, then stilled completely. Inside his room it was quiet. There were no alarms. Through the curtains, I saw the shadow of my patient’s wife as she hunched over and began to cry, and her daughter leaned over to hold her.

And that was it. A man with metastatic cancer had died in the I.C.U.

Complete Article HERE!

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08/24/16

Mission creep doesn’t benefit patients at the end of life

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The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.

The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.

By Samuel Harrington

When my father was 88 and the picture of health for his age, he taught me, an experienced physician, an unexpected lesson.

We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm — a ballooned segment of blood vessel at risk for dangerous rupture in his abdomen. He turned to me and asked, “Why would I want to fix something that is going to carry me away the way I want to go?”

My father had the generally accurate impression that if his aneurysm ruptured, he could demand pain medicine, decline emergency surgery and be dead from internal bleeding within a few hours or, at most, a day or two.

With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. This proposition had been my general belief, but after more than two decades as an internist and gastroenterologist, he had prompted me to reconsider it.

Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy. Not suicide, to which he had a moral objection, and not physician-assisted suicide, which was not a legal option in his home state of Wisconsin.

Despite his generally decent health, we both thought that he was too old for a major surgical repair, so I suggested he undergo an outpatient procedure to insert a stent to prevent the ballooning artery from worsening — that would at least postpone the threat of rupture. My reasoning was that with the stent, he was likely to enjoy the birth of his first great-grandchild and that without it, he would probably never know her.

My father lived five more years and met 12 great-grandchildren. Three of those years were good ones, but two of them were not.

I have asked myself, “Was it worth it?” I know that he asked himself that, too. His mantra for the last two years of his life was “I have lived too long.”

The 2003 book “Tyranny of Treatment” documented the terrible medical procedures used in 18th-century England: draining blood from swollen legs and testicles, radical mastectomy without anesthesia; bleeding arms to “cure” eye problems.

Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course.

Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.

This is one reason that every year more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine.

The impulse to treat often prompts us to forget that many elderly patients have multiple medical problems brought on by chronic organ system weaknesses. Focusing aggressive therapy on one serious diagnosis can complicate another to the point of death, disability or prolonged hospitalization. Beyond that, too many doctors succumb to research from drug and device makers that show incrementally positive results for therapies that mean little to someone at the end of a long life.

As an example, a friend recently told me about her 89-year-old mother’s consultation with an oncologist for a Stage 4 cancer of the pancreas. The doctor launched into a description of some new treatment options.

After listening carefully to what the doctor offered, the patient posed the question, “How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?” When the doctor responded that the answer to both questions was three to six months, she cut short the consultation.

According to the science behind the studies, three months of added life expectancy is considered a statistically significant improvement. But for many people at an advanced age, three months of added “life” in hospitals or nursing homes, possibly suffering side effects, may not be an appealing prospect. My friend’s mother looked at the statistics and saw no practical benefit.

Facing the tyranny of treatment is not usually so dramatic. Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.

One patient I spoke with was living a bed-to-chair existence and suffering urinary incontinence from multiple mini-strokes. She resisted the initial insertion of a bladder catheter as one indignity too far. The thought of an invasion of body, followed by regular catheter exchanges, brought a ripple of sadness to her eyes.

She brightened, however, when I explained that refusing to exchange the catheter would ultimately create a painless urinary-tract infection. If she chose, she could then decline antibiotics, and with the help of palliative medications would be able to die comparatively comfortably of a progressive systemic infection. She now had an exit strategy.

If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable. As Sherwin Nuland wrote in “How We Die,” “The real event taking place at the end of our life is our death, not the attempts to prevent it.”

Therefore, discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy.

In my father’s case, he was clear at the end that he wanted to avoid further interventions designed to prolong life. At age 93, after six months in hospice, medicated for comfort, he died quietly at home.

Complete Article HERE!

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07/31/16

The way we die: elderly people need end-of-life options

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by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today 001caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

 Complete Article HERE!

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04/21/16

In the last months or days, these treatments can make things worse

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By Tammy Worth

doctor and cancer

A woman with ovarian cancer who came to see internist Leslie Blackhall was very upset. The woman’s oncologist had told her it was time to discontinue treatment — that it was doing more harm than good. Blackhall knew that the effects of more chemotherapy would be intense and would compromise this patient’s immune system while buying her only a bit more time. So she asked the woman, who was in her 60s, what she would do with more time. The response: Have more chemo, on the chance it might let her live longer.

Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life.

Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves.

“People don’t have a good way to think about end of life,” said Blackhall, an associate professor of internal medicine at the University of Virginia Health System in Charlottesville. “If we tell people, ‘Chemo isn’t going to help you,’ they still want it. We [all] want a peaceful, comfortable, dignified death . . . but not yet,” she said.

So what has research found about commonly used end-of-life interventions? Which ones can be useful and which are not, and when should they be administered?

Resuscitation

CPR is just one of the treatments offered in hospitals and other medical settings with the purpose of keeping people alive so an underlying health condition can be treated. For instance, a young and healthy person who has a major allergic reaction to a drug can be given CPR to bring them back and treat the reaction.

But CPR is frequently used even when there is no intervention that can prolong life. For a person with metastatic cancer or late-stage dementia whose heart stops beating, the odds are quite low that resuscitation will be lifesaving, said Blackhall, who began studying this issue in the late 1980s.

Numerous studies have borne this out, one of the most recent being a2009 analysis in the New England Journal of Medicine that looked at more than 400,000 people older than 65 who received in-hospital CPR. Researchers found that only 18 percent survived long enough to be discharged. The survival rate dropped at higher ages, with only 12 percent of those 90 and older recovering enough to leave the hospital.

“It is less likely to work when the cause of heart stopping is something you can’t fix to begin with,” such as terminal cancer, Blackhall said. “They are dying, and if they survive that 15 minutes, [the process of CPR] often breaks their ribs. They will end up in the ICU with a catheter, a tube down their throat and another one to feed them.”

Dialysis

When dialysis, which removes waste from the blood, was introduced in the 1940s, its purpose was to keep young people with acute renal failure alive until their kidneys began to properly function again.

Today, an estimated 650,000 people have end-stage renal disease, more than 70 percent of whom are on dialysis. The typical patient on dialysis is 65 years old, and the fastest-growing group is individuals who are older than 75. The treatment is used in approximately 90 percent of elderly people with end-stage renal disease, according to 2013 research in the journal Aging Health. Acute failure, particularly in young people, can be reversed, allowing them to live long, healthy lives. Dialysis, however, doesn’t cure end-stage renal disease.

Sharon Kaufman, author of “Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line,” said this is another area where the default treatment may not be the best option for older patients.

“People aren’t ‘choosing’ dialysis — they are being directed toward what is available, and what is available is more,” said Kaufman, who chairs the department of anthropology, history and social medicine at the University of California at San Francisco. “Patients are not getting better; they are just hoping not to get worse.”

In many cases, dialysis does not lengthen the lives of older, frail patients. And even when it does, that extra time can be problematic. Researchers from the Johns Hopkins University School of Medicine found that frail, elderly dialysis patients had a 40 percent mortality rate after three years compared with a 16 percent rate for healthier patients receiving the treatment. This is, in part, due to the toll dialysis can take on the body.

A New England Journal of Medicine article from 2009 looked at more than 3,500 patients with end-stage renal disease starting dialysis in U.S. nursing homes. Researchers found that 39 percent retained kidney function three months after initiating treatment; but at 12 months, only 13 percent maintained it and more than half had died. The study authors concluded that dialysis in this patient population is associated with a “substantial and sustained decline in functional status.”

Patients do have a choice about undertaking dialysis, but Kaufman contends that the medical system makes it extremely hard to say no.

People are directed toward dialysis because of health care’s love of technology, its fee-for-service system and the specter of litigation hanging over hospitals that do not use all their resources to extend life, Kaufman said. Also, terminally ill patients often have a strong will to live, and they feel as though they are “choosing death” if they opt out.

Kaufman recounted the case of a physician friend with end-stage renal disease who opted out of dialysis, concluding that the hours attached to a machine and the treatment’s side effects — including fatigue, low blood pressure, blood poisoning and muscle pain — were not worth it. “Because he was a physician, he knew,” Kaufman said. “Doctors don’t want for themselves what they do for their patients, and that’s what patients need to know.”

Joseph Gallo, a professor at the Johns Hopkins Bloomberg School of Public Health, surveyed aging physicians about their thoughts on end-of-life treatments. When asked if they would want dialysis (given the scenario that they had a brain injury rather than a terminal illness), nearly 85 percent said they would turn down the treatment.

Feeding tubes

As dementia advances, people tend to be less interested in food. They become more likely to fight someone trying to feed them, choke when swallowing food or keep it balled up in their cheek instead of swallowing.

Feeding tubes are often used to bypass these issues. The idea is that the tubes provide nourishment to prolong life while avoiding aspiration pneumonia (where food goes into the lungs rather than the stomach) and decreasing the risk of pressure ulcers, a breakdown of the skin from something rubbing against it.

Nearly a third of the people in U.S. nursing homes with cognitive impairment at some point are given feeding tubes, according to a 2010 article in JAMA. But a recent study in the Archives of Internal Medicine found that feeding tubes didn’t reduce the chances of pressure ulcers among nursing home residents, and doctors say aspiration pneumonia still occurs when stomach contents back up into the esophagus and then into the lungs.

“It turns out that, at the point in time when people develop problems with chewing and swallowing and eating, their dementia is quite advanced and they don’t have a lot of time left anyway,” said Muriel Gillick, director of the program in aging at the Harvard Pilgrim Health Care Institute.But, she said, “it is hard to say to a family, ‘Your mom has trouble swallowing, so we are just not going to give her anything to eat anymore.’ Families want it because feeding someone we love is our way of nurturing and showing we care.”

Feeding tubes, like dialysis and CPR, are often provided in many health-care settings because patients and families aren’t offered alternatives that seem acceptable as the end approaches.

“What matters most is a person is comfortable . . . and I think generally we have ways to achieve this that don’t involve sticking tubes in people,” Gillick said. Ice chips can be offered to assuage thirst, and reading to people, holding their hands, keeping them warm and dry are all sustaining activities that improve quality of life. These things shouldn’t be thought of as “trivial or fluff,” she said.

“All of us are going to die,” Blackhall said. “The question should be how do we want to live — what do we actually want to do with that time? Let’s make sure that whatever time you have, you can do those things.”

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