Preparing for end-of-life

Everyone should ask themselves, “How do I want to die?”

Preparing for end-of-life

BY MARK FOURRE

As doctors, we are trained to solve problems.

If an arm is broken, we set it. If a heart valve is leaking, we replace it. If infection strikes, we do our best to cure it. There is real satisfaction when, as physicians, we make an accurate diagnosis and deploy an effective treatment.

Perhaps that’s why, when there is no problem to be solved, we don’t always do our best work. Death, after all, is not a solvable problem. All our patients will die. We can’t fix that. And too often, as a result, we don’t do all we should, or could to help our patients accept the inevitable.

Physicians are not alone, of course. Our society generally does a poor job of seeing death as a natural outcome of life. Many of us maintain the myth of our own invincibility long past our 20s. And where death was once something that typically happened at home in the presence of family and friends, it more often happens today in a hospital or nursing home.

When confronted with the question, “How do you want to die?” many of us might answer “I don’t.” But this question, the kind of death we want for ourselves, lives with us every day of our lives. It is true that extending life is a desirable and legitimate goal of our healthcare system, but the quality of our lives — and of our deaths — have a place as well.

None of us can solve death as if it’s a problem, but we can all have goals for the end of our lives. And it is that change, from problem-solving to goal-setting, which can lead us as physicians to do better by our patients when it comes to end-of-life care.

Of course, better end-of life-care, like better health overall, is not just the doctor’s responsibility. Just as everyone needs to do their part in the work of extending and improving life by not smoking, exercising and eating a healthy diet, so, too, must our patients take an active and informed role in good end-of-life planning.

The rewards can be a bit counter-intuitive. Research shows that among those who are given a terminal diagnosis, having an end-of-life plan that includes goal-directed care like hospice leads to care that is not only less costly, but patients on average are happier and actually live longer than those who exhaust every treatment option.

The good news is members of the medical community are beginning to embrace these changes. Across the MaineHealth system, for instance, events were planned around National Healthcare Decisions Day on April 16, organized to raise awareness of better end-of-life planning. And every day the conversation is growing among doctors, nurses and other practitioners about the need to talk to our patients about the benefits of creating advanced directives for healthcare and thoughtful end-of-life options such as hospice care.

For all this good work, though, the most important lessons I learned about death and dying didn’t come as part of my medical training. They came from my parents.

During my internship year, my dad as a relatively young man in his late 50s, had to struggle with the decision of whether to undergo chemotherapy for advanced lung cancer. He decided that his goal was not to pursue more days alive, but rather, to live the rest of his life meaningfully.

He chose to forgo chemotherapy and identified the goals he wanted to meet before dying. He completed the design of a church he was working on. He deliberately and intimately connected with family and friends. He put his financial affairs in order. He even planned his entire visitation service and funeral, including designing the memorial card handed out at his wake.

Importantly, he didn’t do this alone. He had to talk with a lot of people. Everyone important to him knew the plan. His family, his doctor, his business associates and his close friends all understood what to expect. And we all knew that my dad was living the way he always had, in a thoughtful and loving manner.

And, he spent time conversing with his God. “I don’t have a problem with dying,” he would say. “I’m just not sure I agree with the timing.”

My father was able to have the kind of death he wanted because he thought about it beforehand and took steps to insure that he died the way he had always lived.

Years later, my mother died from Parkinson’s disease. I am grateful to this day for the afternoon she spent with me not long after her diagnosis putting her thoughts down into a medical directive that would guide my family through the end stages of that illness. It was a natural and rewarding conversation in part because we didn’t set out to produce a perfect document, just one that would work for my mom and our family.

As a doctor, I have seen the alternatives to these thoughtful deaths.

I remember the first time I responded to a code in the hospital. I was a young medical student. A “code” or “code blue” is called over the intercom system of a hospital when a patient has had an unexpected cardiac arrest.

Amongst all the commotion, the thing that stood out the most to me was the patient. She was very frail, very old — and lifeless. The whole scene struck me as too much. It felt invasive and out of place.

Despite the apparent futility of the efforts, the “code” continued for what seemed to be a very long time. As is the case with the vast majority of “code blues,” the effort was not successful.

There is a reason why 65 percent of older physicians have an advanced directive, compared to 20 percent of the population generally. We know the limits of modern medicine. As a result, we know how we would like to die.

As physicians we must resolve to build end-of-life conversations into the care of all our patients. The time to start the conversation is long before a terminal diagnosis. And as with smoking cessation, progress will depend not on one conversation but instead on an ongoing dialogue.

If you are a patient and your doctor hasn’t brought up end-of-life care, don’t be shy. Ask. The time to start is now, and it is a conversation that should include not only your doctor, but all those close to you.

As an integral and inevitable part of life, death is not a problem. But our failure to plan for it is. Let’s solve it, together.

Complete Article HERE!

Stigma keeping some cancer patients from palliative care: study

By LISA RAPAPORT

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Some cancer patients may turn down care that could ease their pain and improve their quality of life because they think this type of “palliative” treatment amounts to giving up and simply waiting to die, a small Canadian study suggests.

Even though the World Health Organization recommends early palliative care for patients living with any serious illness, negative attitudes among patients and family caregivers often lead them to reject this option, researchers note in the Canadian Medical Association Journal.

“Patients and caregivers in our study saw palliative care as being equated with death, loss of hope, dependency, and going into places you never get out of again,” said lead study author Dr. Camilla Zimmermann, head of the division of palliative care at the University Health Network in Toronto.

“This is in stark contrast with the actual definition of palliative care, which is interdisciplinary care that provides quality of life for patients with any serious illness and their families, and that is provided throughout the course of the illness rather than only at the end of life,” Zimmermann added by email.

Zimmermann and colleagues interviewed 48 cancer patients and 23 of their family caregivers in cases when life expectancy was six to 24 months.

The researchers randomly assigned 26 patients to receive palliative care in addition to standard cancer care, while another 22 patients had only standard care.

Twenty-two patients in the palliative care group and 20 in the control group were receiving chemotherapy.

Over four months, patients in the palliative care group had at least monthly palliative care clinic visits, while those in the standard care group didn’t receive any formal interventions. Caregivers could attend clinic visits for the palliative care participants, but they weren’t required to do so.

Patients were typically in their early to mid-sixties. Most were married and had at least some education beyond high school.

Most family caregivers were spouses, but a few were children or other relatives.

Initial perceptions of palliative care were similar in both groups – patients generally thought this was done only for the dying. While patients in both groups thought of palliative care as providing comfort, they also associated it with giving up on treatment.

Once some patients received palliative care, however, their thinking shifted. Some patients now saw this as a way to live life to the fullest despite the terminal diagnosis, while others suggested that doctors might have better luck renaming this as something other than “palliative care.”

Calling palliative care providers “pain specialists” because they treat discomfort and focus on quality of life would make this sound more appealing and less frightening, some patients said after getting this type of care.

But in the control group, without any experience with palliative care during the study, patients didn’t see the point of renaming it because they thought it would still carry the stigma of giving up and waiting to die.

“Palliative care should not be framed as a last resort option,” said Dr. Anthony Caprio, a geriatrician and hospice and palliative medicine physician at Carolinas HealthCare System in North Carolina.

“These ‘nothing left to do’ conversations often frame palliative care as a way to help people die comfortably, rather than an approach to care that allows them to live with the highest quality of life for as long as possible,” said Caprio, who wrote an editorial that was published with the study.

Using different language in discussions with patients can make a big difference, Caprio added.

“I often describe palliative care as an extra layer of support,” Caprio said. “Who wouldn’t want more support, especially during a difficult illness?”

Complete Article HERE!

An unexpected friendship forms in hospice as the end of life nears

Hospice nurse Jen Moss admires the spirit of patient Jody Wooton

Jen, 41, did not set out to become a hospice nurse, but she feels compelled by a tragic past

Jody, 64, is one of a growing number choosing to die on their terms

On Sept. 24, Jen Moss (right) took Jody Wooton to Kauffman Stadium, where they cheered as the Royals beat the Seattle Mariners 10-4 to clinch the American League Central Division on their way to winning the World Series. Both kept a copy of this photo.
On Sept. 24, Jen Moss (right) took Jody Wooton to Kauffman Stadium, where they cheered as the Royals beat the Seattle Mariners 10-4 to clinch the American League Central Division on their way to winning the World Series. Both kept a copy of this photo.

BY ERIC ADLER

Jen Moss took to Jody Wooton from the first moment they met.

Jen, 41, the hospice nurse. Jody, her irreverent patient, all but spitting in the eyes of her doctors.

‘Refuse treatment and you won’t live two months,’ ” Jody remembers one doctor chiding her. Jody, 64 and with a wilting heart patched together with a quilt of 11 stents, glared back at him through rectangular glasses.

“Only two months? I usually get four, you know!”

Jen, whose own life has been touched by violent death in ways few have experienced, so wants to give Jody the good and peaceful death she deserves.

Jen admires her spunk, seeing behind what even Jody’s family recognizes is a sometimes cantankerous cover.

The way Jody sees it: hell if she is going to take more of that “crap,” as she puts it, from some pissant physician who felt it was his duty to pump her full of meds and IV fluids until her body bloated and her fingers swelled like blood sausage. It had happened before.

“Couldn’t wear my clothes,” Jody complains.

Three times over a decade, doctors said she might die from her bad heart. In March 2015, she actually did, but doctors jolted her back.

When she woke in recovery, oxygen and IV lines crisscrossing her body, she excoriated hospital workers.

“I said, ‘What the F are you doing?’ I had a DNR!” — a do-not-resuscitate order. But the hospital couldn’t find its copy, so the doctors brought her back to life.

After that, she was fed up.

“Wouldn’t back down for anything or anybody,” says Jody’s brother, John Kerby, 54 and a trooper with the Kansas Highway Patrol. “Everybody was a friend, unless you gave her reason not to be.”

So that was it. Call hospice, Jody told her sister. Jody was already widowed, terminally ill, no kids.

“I will be here as long as I’m supposed to be here,” she says now. “Nobody is going to tell me that I have to do this right now, or that right now.”

She will die on her terms.

“If I’m doing this,” Jody says, “I’m doing it my way.”

It’s a choice that ever more people are making in the United States. From a handful of nonprofit programs in the 1970s, hospice care has exploded to more than 6,100 programs, most of them for-profit today. Hospice now is a $15 billion a year industry.

Of the 2.6 million Americans each year who die, almost half, 1.2 million, die in hospice care. Their family members can take some semblance of peace knowing they died not alone in a hospital, but among loved ones in the place they saw as home.

Jen works at Kansas City Hospice & Palliative Care, which was one of the first hospices in the area when it opened in 1980 with two nurses and 13 patients.

Today the nonprofit employs 177 nurses, along with chaplains, social workers, counselors and nurse aides, who care for some 2,300 patients a year. There’s Jen’s “blue” team for home care, a “red” team for nursing homes, a “gold” team for both and a “carousel” team for terminally ill children.

The program is only one inside a crowded field of nearly 40 Kansas City area hospices. Elaine McIntosh, president of Kansas City Hospice, calls it “one of the most competitive areas in the country.”

Job chooses Jen

Neither Jody nor Jen anticipated the connection they’d find in hospice.

On a chilly morning in February, the nurse, just over 5 feet tall and with a tumble of shoulder-length black hair, rolls her silver Ford Fusion to a stop across the street from Jody’s home in the Overland Towers Apartments, an eight-story complex for senior citizens at 86th and Farley streets in Overland Park.

She gathers her belongings, grabs her stethoscope and checks her satchel, which contains a tablet computer with the names and medical records of Jen’s 13 patients: another woman, 64, dying of congestive heart failure; a 66-year-old man with Alzheimer’s; a father of three children, age 60, with bone cancer.

Among the patients she will see later: Al Jensen, a 90-year-old Navy veteran of the Normandy invasion who until recently has been as healthy as a war horse. His goal was to live 10 to 20 more years, but that was before doctors discovered more than a dozen cancerous tumors riddling his insides.

“Morning,” Jen says cheerily as she enters the Overland Towers lobby. A smattering of residents with canes or walkers smile and wave from their chairs.

Truth be known, as a self-described optimist and mother of three lively sons, Jen never in her wildest imaginings thought she’d be doing this job.

When she started her nursing career, it was in a hospital’s orthopedic/neurological unit, followed by neonatal intensive care. She moved to a dermatology practice and had a friend who’d become a hospice nurse. Jen recalled thinking, “Who in their right mind would choose to be surrounded by dying people every day?”

At Rockhurst University, one of Jen’s nursing professors spoke glowingly about it.

“My God,” Jen remembers thinking, “that sounds awful.”

But after two years with Kansas City Hospice & Palliative Care, she has come to experience the job’s grace, along with the deep, even spiritual satisfaction that accompanies her connection to patients and their families at one of the most difficult moments in their lives.

More, Jen wonders whether this is what her grandmother was talking about when she assured Jen, especially in her darkest moments, that “God has a plan for you.”

“Sometimes you don’t choose a job,” Jen says. “It chooses you.”

Who better to choose than someone like Jen, with a tragic past few could fathom?

“My sister says I should have been on the Oprah show,” she says. “My whole life has been dramatic, surrounded by death. My life has led me up to this job.”

Living around death

If divine or cosmic plans exist, Jen would argue that hers was set in motion months before she was born. That’s when her biological father, at age 23, died in a car wreck. Her mother, married at age 18, was just 19 and three months pregnant with Jen. Now she was a teenage widow.

Years later, as Jen herself was turning 19 — a year after her graduation from Park Hill High School — she also became pregnant and in 1994 had Neil, the first of her sons. Becoming a nurse had been a lifelong goal, “but college went by the wayside,” Jen says.

Instead, as a single mom, she worked for years as a waitress and bartender on the County Club Plaza, where she fell in love with Eduardo Gonzalez, a handsome dishwasher from Mexico.

They married in Las Vegas. They had a son, Frankie, in 2000. The family of four was happy.

Until, on a September night in 2002, Eduardo went out with his brother. Jen had an ill feeling.

“That night I knew. I just knew,” she says. “I’m like, ‘Don’t go. Don’t go.’ He’s saying, ‘Why not?’ 

The call later broke the night’s silence: Come quickly to St. Luke’s Hospital. There had been a fight and, as Eduardo ran to protect his brother, a gunshot. Jen burst through the emergency room doors and was given word.

“I heard screaming,” Jen recalls. It filled her head but seemed far off. The voice was hers, echoing in her ears as she disassociated from the tragedy. “The next thing I know, I’m against the wall on the floor.”

Jen was 28, widowed with two children. Family and friends gathered around her, including her cousin, Tony Rios, who was Jen’s age, and Olivia Raya, Tony’s 26-year-old girlfriend, who was soon to graduate from Rockhurst University. It was Olivia who had been urging Jen to fulfill her dream: Go back to college. Become a nurse.

Then, three months later and days before Christmas, Jen had a dream. It was beautiful.

“I’m sleeping,” Jen says. “It’s like a white light, and we’re like spinning in a circle: me, Tony and Olivia. And they’re telling me that they’re OK, everything is going to be OK. It was just this overwhelming calm. I was like, ‘Oh my God, I have to call him.’ 

The next morning, a call came her way.

Tony and Olivia were dead, slain in their Kansas City home in a robbery/drug deal. Olivia, who had just graduated from Rockhurst, had been writing thank-you notes when it happened.

Jen loved her wayward cousin deeply. She had been aware that he dabbled in drugs but had no idea how seriously deep it had become.

Still grieving after the murders, she entered nursing school, where she would hear the professor talk about hospice. Married again in 2009 — to Micky Moss, a Sprint engineer, and after having a third son, Everett — she thought she had something to give.

Jen knew grief and the complications of families. Having experienced violence in life, having seen how impersonal and undignified death could be, she thought maybe she could turn it into something more graceful.

Stories of intimate connections with death are hardly uncommon among those who choose to become hospice workers. Nurse Julie Griggs, 59, who trained Jen, came to hospice 12 years ago after spending 12 years treating patients in hospitals, where she thought so much of care, including death, had turned too clinically rote and impersonal.

Like Jen, colleague and social worker Crispian Paul, 37, had also experienced tragedy, the death of her 16-year-old sister in a wreck when Crispian was 12. Her mother later died of domestic violence. Crispian wanted to help others, possessing what she calls “a comfort level” with dying.

So it is with Jen.

“I do feel like because I have had a lot of loss and have lost a spouse — I don’t know exactly what all families are going through — but I know I can offer them some empathy, and some support and just” — Jen pauses before continuing — “some kindness.

“I mean, I get so much out of it as well. I meet all these families. You know, they’re trusting me with this, this such special, horrible time in their lives. I feel like I can help support them.”

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Caring, not curing

At Overland Towers, the elevator carries Jen to the seventh floor. She turns right to Room 707, with the name JODY spelled out in purple, Jody’s favorite color. Black and white stickers of puppy paw prints run up and down the door.

“Jody loves animals,” Jen says.

Cats. Dogs. A ferret. Years back, Jody volunteered for a pet rescue group. Sometimes she had six or seven dogs, plus cats, before she moved to the towers.

Jen, to be sure, can’t precisely predict how much time Jody has to live.

“I’ve see her declining quite a bit in the last three months,” Jen says. “She possibly had a heart attack, a mild one, three weeks or a month ago.”

But there is no going to the hospital. That’s not how hospice works.

“I treat her pain,” Jen says.

As common as hospice has become, workers, indeed, still find it necessary to educate people on exactly how it works.

A common mistake is to link hospice care to euthanasia or physician-assisted suicide. The notion that hospice workers give patients medications to hasten their deaths is utterly wrong.

Instead, the essence of hospice is caring for patients as they move toward the end of life, in peace and with minimal pain. As the National Hospice and Palliative Care Organization puts it, hospice is about “caring” for one on the journey toward death, as opposed to “curing.”

To be eligible for hospice care, a person must be judged by a physician to be terminally ill and — making the choice to no longer seek curative treatments — likely to die in the next six months. Ninety percent do. Half of hospice patients in 2014 died within two weeks.

Jody is rare. She has been on hospice for a year, which is allowed if regular medical evaluations find the patient’s health has continued to decline in a way that makes death likely, and soon.

Once someone is on hospice, Medicare, Medicaid or private health insurance picks up the tab. Hospice patients receive a host of services including regular nursing care, prescriptions for pain and comfort, a hospital bed, a wheelchair, oxygen, help with bathing, social work and chaplaincy services.

In general, there’s no rushing to an emergency room for curative care.

“Medicare won’t cover any hospitalization,” Jen says. “They won’t cover any treatments. No diagnostics. If you’re on hospice, they’re paying for hospice.”

You can change your mind. People do revoke hospice. Some even rally and improve enough to go off hospice, then come back if they again decline. Some people on hospice choose to be resuscitated, wanting to eke out every minute of life possible, even when they are terminal.

“It’s their choice. We respect it,” Jen says.

But Jody, with her DNR order, does not want that. She is not getting better. She and Jen feel lucky that the year they’ve shared has allowed them to bond.

Similarly, Suzanne Fuller, 41, has bonded with Jody as her bath aide.

One of Jody’s problems, diabetes, caused her to lose the bottom half of her left leg. Sometimes Suzanne accidentally will step on her prosthetic foot.

“Ouch!” Jody will yelp, then, “just kidding.”

Big heart, big personality, no complaints. They laugh and laugh. Jen feels the same.

“I’m really going to miss her when she goes,” Jen says.

She knocks on the apartment door and calls out.

“Jody? It’s Jen.”

No answer.

“Jody?” she repeats, her voice a bit more concerned.

Silence still. Jen turns the knob. The door, unlocked, opens.

No sound from the other side, and Jen calls once more.

“Hello?”

Monday: For her own dignity and peace, Jody prays her death will be quick, no bother to anyone.

Complete Article HERE!

Volunteer comforts those near the end of life

By George Basler and Connie McKinney

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Kathy Pfaffenbach has volunteered at Mercy House of the Southern Tier since it opened. She helps provide comfort and care to terminally ill patients.

Kathy Pfaffenbach can understand how some people don’t want to think about the issue of death and dying.

But three days a week, the 64-year-old Binghamton woman confronts this reality up close and personal as a volunteer at Mercy House of the Southern Tier — the first home for the terminally ill in Broome and Tioga counties.

She considers it a privilege, not a burden. “Death is so private and personal. I feel humbled that (the residents) allow me to become part of their daily lives,” she said.

Pfaffenbach began volunteering the first day the nonprofit community care facility opened in early March. She’s one of more than 200 volunteers — along with three full-time and seven part-time staff members — who staff the Endicott facility 24 hours a day, seven days a week.

One of Mercy House’s core missions is ensuring “nobody dies alone,” and volunteers are essential in fulfilling this mission, said Amy Roma, director of resident care. They cook, they clean and they help residents with personal care. Just as importantly, they sit with residents, providing companionship and caring as the terminally ill reach the end of their lives.

“So far, we’ve had six residents die, and nobody’s died alone,” Roma said, with a touch of pride.

Pfaffenbach started volunteering eight months after retiring as supervisor of emergency services for Catholic Charities of Broome County. In that capacity, she helped provide in emergencies and directed two food pantries that served some 5,000 people each month.

“That was a feel-good job. When you unlocked the building in the morning, you knew you were going to make a difference in someone’s life,” she said.

She found she missed working with people after spending 27 years with the agency and was looking for something to fill her days.

“Retirement’s not what it’s cracked up to be,” she said, with a laugh. “How many times can you clean your house?”

Sitting home gets old fast if you don’t have a purpose to get up in the morning, but Mercy House provided that purpose. “It’s a way for the whole community to embrace a person as they make their next step into eternal life,” Pfaffenbach said.

The facility, which opened after several years of planning and fund raising, is in the former St. Casimir’s Church, at 212 N. McKinley Ave. in Endicott. Modeled on a similar facility in Syracuse, the 10-bed home will serve patients who have been diagnosed in the last months, or weeks, of their lives and can no longer stay in their own homes.

The facility is bright and airy, with a lounge area for residents and their families, and a nondenominational chapel. Staff work to make it as close to home as possible, Roma said, including personal touches. When a resident dies, staff place a rose and prayer card on the bed so friends and family can spend a moment remembering the person.

Organizers call it a leap of faith. The annual cost for Mercy House is about $600,000 a year and will be paid mostly by donations and fundraising.

As a volunteer, Pfaffenbach spends two days a week helping to made breakfast for residents. The third day, she works as a caregiver, doing a variety of jobs. She takes residents to the bathroom,brings them to the dining room or simply sits with a resident. Sometimes they talk; sometimes she just provides quiet comfort.

“Kathy is a great volunteer. You can tell when she comes in that she loves the residents. She’s here for all the right reasons,” Roma said.

Pfaffenbach’s first job at Catholic Charities was working in the pregnancy and foster care program, she said. She saw the beginning of life, and now she’s seeing its end.

The most challenging thing about this work is seeing a relationship end when someone dies, she acknowledged. Residents become part of the fabric of your life, but fabric wears out, she said. Still, it’s always replace it with another thread, Pfaffenbach added quickly

Every time she walks into Mercy House, she feels a sense of peace and tranquility. Some deaths are easy and some are hard, but when you see them as the next step into eternal life, it’s not fearful, she said.

“I’m here to give comfort,” she emphasized.

Complete Article HERE!

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

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.”

Complete Article HERE!

A letter to … the hospice doctor who helped us to say goodbye

The letter you always wanted to write

 ‘There is nothing to do but wait and I see that you know how hard this is. You have seen this many times.’
‘There is nothing to do but wait and I see that you know how hard this is. You have seen this many times.’

When my father arrives in the hospice, there is a flurry of activity. Drug charts are checked, vital signs are tested. We all know he has come here to die, but still the idea is that something might be fixed, at least temporarily, and the young doctor and nurses on duty that evening have an air of “sorting things out”. It is a relief to get here; they know what to do. The flat has become a claustrophobic, smelly and unmanageable place for my mother to care for Dad.

The next day, you slide into the room like an elegant cat – without an entourage of junior doctors, a computer on wheels or a stethoscope slung around your neck. You lean over my sleeping father and take him in without saying anything, and then turn to my mother with a smile that is at once kind and serious.

You take us to a side room and tell us that he is nearly finished with his body now, that it is normal and natural and that there is nothing to be done except to keep him comfortable. You say it clearly and calmly, making eye contact with my mother. It is a beautiful day, and you suggest we take a walk and look at the sky, the daffodils, the trees beginning to bud. “He will be with you in these things,” you say, entirely without sentimentality. “It is time to let him go.”

For the first time in the entire period of my father’s cancer, my mother cries. Woman to woman, you look at her and she feels your genuine solidarity. It is a turning point, and from then on my mother prepares to cut free from her husband of more than 55 years.

Over the next days, when on duty, you appear quietly in the room with an aura of respect for the sacred space we have created with flowers, cards and drawings by grandchildren. You never talk loudly to my father as if he is deaf or stupid. You also never adopt the drippy, concerned tone often used by professionals with the ill or grieving. Your gaze is clear and direct, as is the information you give us. Dad is taking his time, he has things to say and his body is not quite ready to close down.

“This is not a medical condition we can treat, or something I can help with drugs or charts,” you say, as I pack away my violin after playing the Scottish folk tunes of Dad’s childhood to him. “This,” she gestures to my son sitting on the bed, the guitar lying on the chair, Mum holding Dad’s hand. “This is all that’s important now.”

There is nothing to do but wait, and I see from your experience and wisdom that you know how hard this is – this endless waiting, which is pregnant with ambivalence. You have seen this many times before.

Thank you for what Cicely Saunders (the founder of the modern palliative care movement) called the “depth of time” you have given to us. Perhaps you spent no more minutes with my dad than any of the other professionals. Perhaps you even spent less time, as you didn’t bother much with symptoms or drugs and interventions that we could all see were pointless. But you met my dying father, my mother and me with honesty, dignity and sincerity, and this is what we will remember and treasure.

Anonymous

Complete Article HERE!

Humor and Hospice

by: Kelly Krenzel

Bill_and_Karen

When you meet Bill and Karen, you instantly feel the love they have for one another. Their faces light up with joy when they sneak a glance of each other. A quick wit and robust laughter are at the heart of their relationship. They take turns teasing each other in a healthy back and forth, always with a chuckle and a smile.

Married for 14 years, the pair has experienced many adventures together, one of which was their initial meeting at a tiny café in Luck, Wisconsin, where Karen says she noticed quite the “character” joking with the waitress one morning. She didn’t make much of it at the time until the following day when she returned to the café, and Bill (the character) was there again. He approached her and asked if he could join her for breakfast. “I said I suppose. I got a free breakfast out of it, why not,” Karen said with a laugh. They continued to meet up for breakfast for the following six weeks and quickly got to know one another. “She has not paid me back for one breakfast,” Bill added with a chuckle. After about a month, they went out on an official date, and according to Karen, “The rest is history!” Bill razzes Karen, “You lucky kid, you! I couldn’t run any faster, you were running after me!”

With the same sense of humor and positivity as when they first met, the couple is facing the biggest challenge of their lives together. Bill was diagnosed with lung cancer three years ago. Since then he has gone through multiple rounds of chemotherapy and radiation with no progress, including the last session when he tried a new type of treatment. “I got sick for about a week and a half. I mean sick–in bed, and when I finally got up, I was sick for another week after that. I couldn’t go anywhere or do anything, and then it was time to go back and get another shot. You get them every three weeks,” Bill explained. He and Karen talked with his doctor about discontinuing treatment. “I said as far as I am concerned, it didn’t do me any good except put me right down,” Bill said. “Isn’t this kind of a waste of my time, your time and whoever is paying for this? It cost me $1,500 each time, and that’s with Medicare and private insurance paying, too.”

After encouragement from his doctor, Bill and Karen enlisted the help of Hospice of the Red River Valley in July 2015. “You take the good with the bad. I’m not going to sit around and mope. That’s kind of silly to me. They have no cure,” Bill shared. Instead, he is focused on living the best life he can with time he has left.

Staying at home with the assistance of hospice is something Bill feels great about because he can continue to live his life and his hospice team is just a phone call away. “Hospice is a good thing to have. If we need something, it’s here,” Bill said. “They [hospice] actually do make it better, I have to admit. They give you a sense of confidence. While you’re here, they make you as comfortable as they possibly can. As far as I’m concerned, they are doing one heck of a job.”

Bill is especially fond of his hospice nurse, Kelcie, and social worker Robyn. Both make regular visits to see him. “They are just like family. That’s the only way I can explain it. They really are. If I need supplies, they bring everything I am supposed to have,” he explained. Bill jokes that he also gives Kelcie and Robyn a few pointers in their jobs because he is “quite a bit older than them.”

“Kelcie is great. With the medicine, you don’t worry about anything, and it sure cuts down on the expense. She checks on them every time she comes,” Karen said. “She has provided a lot of relief in just knowing everything is getting taken care of. Just to know that everyone is so helpful and friendly, that helps a lot,” Karen added. Kelcie also found out that the couple enjoys playing games, and right before Christmas she visited the pair with a surprise in-hand. “I’ll be darned if she didn’t come in with a game of Jenga,” Bill said with excitement. Karen notes with a giggle that Bill did not win Jenga when he played Kelcie, for the record.

“Bill and Karen have hearts of gold. It’s enjoyable to visit Bill because even if he is not feeling well, he makes jokes and asks how your day is going. At the same time, he is honest about his symptoms,” Kelcie shared. “Karen wanted to be able to keep Bill at home, and she does a fantastic job helping him and keeping track of his medications. It is nice to be able to help so Bill can continue to enjoy life and stay positive.”

Bill points out that he cannot identify just one thing he appreciates about hospice care, rather it’s everything about the care. “You can’t pick out one thing. You really truthfully can’t, at least I can’t. Everything I’ve experienced since I’ve been in it is great. There’s no way I’d have a complaint, and I’d argue with anybody who did,” Bill shared.

Karen wholeheartedly agrees with Bill. “It’s [hospice] is the best thing that ever happen to us. Emotionally, financially, everything. Hospice is a Godsend,” she said. “That’s a nice way of putting it, actually,” Bill echoed. Initially, both Karen and Bill thought hospice was only for the last days of life. “I thought you started hospice when there was no hope of anything. That’s definitely not true,” Karen said. “We didn’t realize how completely extensive the services were that hospice offers, including the 13 months of after-death support. Hospice makes the last months or years of your life much better. It’s a super organization.”

As the days go by, Bill enjoys many of the things he always has, like trips to Sandy’s Donuts every Monday, Wednesday and Friday, and visits to his granddaughter’s lake cabin near Perham. “I tell Robyn when we go to the lake for a weekend, that way she calls the [hospice] team down there to let them know I’m in the area in case something would happen,” he said. The couple has also planned a large family gathering in June of this year with 60-plus friends and relatives planning to come, including their five children and many grandchildren and great grandchildren. While they await the summer months, they spend each day appreciating each other and the love they share. “We’re lucky to have each other,” Bill said with a big smile.

Bill_quote_story

Complete Article HERE!