Category: Pain Control

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Doctors should be trained in art of ‘diagnosing death’

By LIZZY BUCHAN

Diagnosing death
‘Diagnosing death’ would prevent unnecessary distress at the end of life.

Doctors need to be trained in the art of “diagnosing” death to prevent unnecessary distress at the end of life, an expert has claimed.

Dr Erna Haraldsdottir, a senior lecturer at Queen Margaret’s University, in Musselburgh, called for a shake-up of thinking on medical intervention for the dying after watching her elderly father-in-law die in hospital.

The 84-year-old had been diagnosed with dementia five years beforehand and his family watched his gradual decline until he was admitted to hospital. Although he was elderly and very frail, doctors attempted to discharge him at one point and tried to resuscitate him as a “do not resuscitate” note had not been arranged.

Doctors were also reluctant to issue a death certificate as they were unsure of his cause of death.

Writing in the European Journal of Palliative Care, Dr Haraldsdottir said doctors need to change their mindsets over when patients need medical intervention and try to “diagnose” death.

Dr Haraldsdottir, who also leads a pioneering research programme at St Columba’s Hospice in Edinburgh, said: “In my own experience, our family believed my father-in-law had a good death, however what was noticeable was the staff’s lack of insight into the situation and understanding of what was happening.

“This caused the family unnecessary upset and distress – which could have been avoided if the medical team had applied the principles of palliative care to the assessment and care.”

Ministers unveiled a five-year plan to put palliative care at the heart of the NHS in December and to ensure a greater openness around death and dying.

It comes after a Glasgow researchers found falling numbers of Scots were dying at home, despite many saying it was what they wanted.

It is more important than ever for hospices to be leading the way when it comes to developing care around death and dying, said Dr Duncan Brown, medical director at St Columba’s Hospice.

Complete Article HERE!

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Dying Better, Even If It Means Sooner

Delaying death with excessive, expensive end-of-life care often does more harm than good.

Focus on the simple things, not extraordinary measures
Focus on the simple things, not extraordinary measures

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Life expectancy in the United States has increased by 30 years in the last century. Despite our longer lives, many Americans continue to fight death’s inevitability in ways that are costly socially, economically and spiritually. Our over-reliance on medical “miracles” is causing us to throw more and more money at the final year of life rather than grapple with the difficult – but ultimately more gratifying – work of approaching death more willfully by removing the sense of crisis and making the most of the moments that remain.

Defying and delaying death often remains the focus of many care providers even when patients reach their 80s, 90s and 100s. These individual decisions add up to the single greatest expenditure in the national health system: Care in the last 12 months of life accounts for over 25 percent of total expenditures for both Medicare and Medicaid. And while some studies have argued for cost savingsassociated with hospice care, others show cost neutral effects of engaging hospice in the last months of life, depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date.

In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death’s inevitability is also deeply unsatisfying.

Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones.

End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food.

Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible.

The friends and family members who are most proud of how they helped their loved ones often talk about little tokens: a friend clipped part of a favorite flower so her friend could smell her yard one more time; a daughter got the quilting club to gather in the hospice room; a son dug up a favorite book and read and read and read until he was certain his dad could no longer hear his voice.

Obviously families who seek life-prolonging measures do so for more moments with their loved ones. Unfortunately, aggressively delaying death often becomes the focus of the final weeks and days. Pursuing significant medical care often distances us from our loved ones: time spent in waiting rooms, surgical units and follow-up appointments, rather than watching the geese take off over a lake, taking that final trip to one’s homeland or reconnecting with friends who have been distant.

As more of us live longer and die slower, the challenge for many Americans will be to avoid rushing toward solutions and to live, sometimes quietly and uncomfortably, in the shadow of death’s certainty. End-of-life experts have taught me that recognizing limits might save us from some of the real damage we do to each other – asking our elders to fight on too long, to endure too many procedures and tests and surgeries and to spend too much time in the hospital instead of at home or in the garden – or holding the hand of someone who loves them.

Complete Article HERE!

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What Dying Looks Like in America’s Prisons

In many places, inmates who want to go into hospice care have to sign a do-not-resuscitate order first.

By ANN NEUMANN

Members of the media walk down the corridor inside the Adjustment Center during a media tour of California's Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America's most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.
Members of the media walk down the corridor inside the Adjustment Center during a media tour of California’s Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America’s most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.

I drove the four and a half hours to Rome, New York, the night before I was scheduled to visit the prison hospice program at Mohawk. The desk clerk at the Quality Inn gave me directions the next morning. “You can’t miss it,” she said in a raspy voice. Mohawk had once been a residential home for the developmentally disabled. It occupied the southernmost corner of the 150-acre Mohawk-Oneida campus and was converted to a medium-security prison in 1988. Today, it houses about 1,400 inmates, 112 of whom are inside the “skilled nursing facility,” Walsh Regional Medical Unit, which takes in prisoners from the central and western parts of New York State.What the hospice program at Mohawk did was prevent patients from dying alone. Terminal patients, particularly those dying inside prison, need human contact, companionship, and a chance to talk about their lives, the nurses told me. The program also provided healthy prisoners who had good behavior records the chance to train as volunteers, to give back to their fellow inmates. The program provided a real “sense of satisfaction to our guys,” according to the daytime hospice nurse. “They’re proud of what they’re doing. They’re putting someone ahead of themselves. They’ve put themselves first until now.” Volunteer training took place once a year (and lasted one week), but applications came in throughout the year.

The nurse called the patients in Walsh “my patients” with a kind of endearment that expressed her commitment to them and the program. Among them, 11 were dying of AIDS and seven had major illnesses, like cancer. Special accommodations were made for dying patients—like private rooms with TVs and radios and special meals—but the staff was prepared  for the “traps” that such accommodations could bring: trading morphine for cigarettes, being alone with female staff. The program, I was told, accepted patients with six months or less to live, although some live longer. “They have the chance to get involved with their own feelings,” one of the nurses said.Because of my time spent as a hospice volunteer, the tone these staff members used caught my attention. They were proud of the jobs they were doing; they felt they were contributing to the betterment of society. They found their work rewarding and fulfilling. I was in awe of them even as I balked at the paternalistic role they played in helping these prisoners—caged, monitored, “employed,” removed from the world—to  “give back.” The concept of rehabilitation may haunt any conversation about incarceration, but the extent to which anyone believes in it gets lost in the practices of policing, sentencing, and incarcerating. It’s easy to suspect that this is in part because of the power dynamic involved. Prisoners are subjected to a particular role inside, one that punishes them for any kind of deviation. They are constantly subject to an unbending authority. When prisoners go into hospice, either as patients or as volunteers, the rhetoric that surrounds their roles is constantly infused with ideas of reform.

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Walsh, it seemed, was replicating the hospice model, now decades old, inside its walls. And the old hospice directive—that patients should be helped to think reflectively and reckon with how they’ve lived their lives—fits surprisingly well in prison. It dovetails with the belief that men were incarcerated because they had not taken responsibility for themselves, because they did not understand compassion, did not follow the rules, and did not make themselves productive and useful members of society. Hospice is a way for them to find forgiveness for their sins and to make peace with their world and themselves.

Since prisons were established in the United States, there have always been prisoners dying inside, but the recent rise in the age of the prison population and the need for prison administrators to find ways to care for the elderly, sick, and dying provided them with a new opportunity for rehabilitation: care for the dying. What better way to help a prisoner face his sins than turn his face toward death?There are 2.3 million adults in jail or prison in the United States. That’s the largest number of incarcerated people in the world. Between 1995 and 2010, the number of prisoners over 55 quadrupled.  By 2030, they will account for an estimated one-third of all incarcerated people, according to a 2014 report, The High Cost  of  Low  Risk: The Crisis  of America’s Aging Prison Population, by the Osborne Association, a prison advocacy group based in New York. Behind prison walls, where every social malady is compounded, is the perfect place from which to consider the future of health-care access and end-of-life care in the United States.

According to the National Hospice and Palliative Care Organization’s 2012 report, End of Life Care in Corrections, there were more than 75 hospice programs in U.S. prisons in 2012. Fifty percent of them rely on inmates as volunteers. A 2011 paper by Katie Stone, Irena Papadopoulos, and Daniel Kelly in Palliative Medicine suggests that the benefit for inmate volunteers is that “they are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training.” Inmate volunteers know what it’s like to be a prisoner and can better share experiences and understanding with incarcerated hospice patients. The paper suggests that volunteers “gain valuable psychological rehabilitation”  through  a “renewed sense of responsibility and care.”

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But such programs, according to the study, have two primary challenges: pain and trust. Pain management in a facility where drug use is rampant—and, indeed, a major cause of incarceration—is problematic. Doctors and nurses can find it hard to believe a patient who tells them he’s in pain. “A culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief,” the Palliative Medicine report states. The “macho” prison culture also prevented many in pain from admitting what they felt. But a larger issue, one difficult to measure, exists: “Prison healthcare staff may believe that prisoners deserve their suffering.” In other words, pain is punishment. Staff members tend to default on the side of pain over more medication when prescribing narcotics to hospice patients. In church parlance and even in broader society, the belief that pain makes us better people is commonplace. In prison, suffering is part of the centuries-old plan.It’s also hard for prisoners to believe that staff members have their best interests in mind. Can you trust doctors who work for a system that controls every aspect of your life? A system that was established to punish, subjugate, discipline, restrain, subdue? Decisions to limit care (or not pursue every option) can make prisoners even more distrustful of their caregivers. Couple that with the requirement that, in 55 percent of prisons, patients must sign DNR orders before they can enter hospice, and a climate of deprivation, ill will, and doubt about the facility’s objectives  can grow. Patient safety is tempered with a paternal “we know what’s good for you” attitude; prisoners who feel their lives are less valued think the system doesn’t care about them or is invested in getting rid of them. Yet sending prisoners to external hospices, as is done in the United Kingdom, or releasing those who are too ill to violate laws, is also a problem. The saddest sentence of the Palliative Medicine report is: “For some, the prison and its inhabitants  are all that is familiar due to institutionalization.”

“The challenge is that we can’t lose compassion or cross a line,” a nurse told me, her tone warm and professional.It’s just one of the many health challenges unique to prison populations. Prisoners age faster than those of us outside. “Incarceration not only compounds existing health issues and heightens the risk of further health problems,” states the Osborne Association’s 2014 paper, “but—most alarmingly—has a deteriorating effect on the bodies of incarcerated people.” Incarceration may slow down a prisoner’s perception of time, but it accelerates his body’s. Incarceration takes more years out of a life than just those required by a sentence. Lack of proper mental and physical health care and abnormally high levels of stress and anxiety can make fifty-year-old prisoners’ bodies seem 10 to 15 years older. Of prisoners over 50, 40, to 60 percent have mental-health challenges.

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Prisons weren’t designed for elders, either. They require that prisoners climb into bunks and haul themselves up stairs or across long distances. Meals must be eaten in 12 minutes. Daily routines are strictly timed and regimented; one error—due to dementia, disorientation, physical inability, or pain—and punishment is delivered. The physical discipline of prison, meant to rehabilitate the weak, evil, or selfish mind of a criminal, is a questionable approach to reform, at best. For an elderly population, it looks like abuse. But renovating America’s prisons to meet the needs of an aging population isn’t in the budget. Dealing with the needs of prison elders will take a variety of approaches, none of which look easy.The costs of prison health care are, like the costs of public health care, rapidly increasing. The United States currently spends about $16 billion—more than the entire Department of Energy budget—on incarceration of prisoners over the age of fifty. While it costs about

$34,000 a year to keep an able-bodied prisoner locked up, elders can cost as much as twice that amount.

Compassion is a complicated thing. It’s an emotion, both abstract and concrete, shown both in our broad support for groups or issues and in the care that we give those around us. It’s easier to care for people when you trust them, but also when you know you have power over them. When you know they need you.Trust or safety, then, can alter our levels of compassion. I felt guilty for not having more compassion for Moore, a prisoner I met at Mohawk, who later wrote to me, and I didn’t know if it was because of him or because of where I met him. I didn’t want him to be in pain. I didn’t want him to be treated unfairly. But I didn’t want anything to do with him, either. That, I realized, was the line that prison medical staff people had to draw. They may use prison rules or state laws or medical ethics to draw the line. And those laws and rules may make their work easier for them. But it was an institutionalized way of grappling with very complicated emotions like trust and safety and even personal chemistry. Their work is made possible by an ethics, not to be confused with a universal set of moral principles. The ethics of the prison medical staff members was unique to their place of work, a prison. We can and will, as a society, argue about what the laws should be, about what our conscience should let us do.

Complete Article HERE!

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In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

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How Uganda Came To Earn High Marks For Quality Of Death

By Rae Ellen Bichell

african-palliative-care-association
A elderly patient with chronic debilitating back pain receives a bottle of liquid morphine during a home visit from a representative of Hospice Africa Uganda.

Food coloring, water, a preservative and a pound of morphine powder. These are the ingredients in Dr. Anne Merriman’s recipe for liquid morphine.

“It’s easier than making a cake,” says Merriman, a British palliative care specialist who founded Hospice Africa in Uganda in 1993 and helped design the formula that hospice workers in Uganda have used for 22 years to craft liquid morphine. The lightest dose, dyed green to indicate the strength and to make sure people don’t confuse it with water, costs about $2 per bottle to make. Stronger doses are dyed pink and blue. A 16-ounce bottle is about a week’s supply for most patients.Dr. Anne Merriman

Those cheap bottles of green, pink and blue liquid morphine have changed the way people die in Uganda — and are a key reason why Uganda has the best quality of death among low-income countries, according to global Quality of Death Index published by the Economist Intelligence Unit.

Back in the 1990s, two of the biggest barriers to good death in Uganda were simple: not enough doctors and not enough morphine. Largely through Merriman’s drive, Hospice Africa Uganda developed professional education in palliative care that would spread the responsibility to nurses, rather than relying on doctors. They helped make it mandatory for medical students in Uganda to study pain management – before Germany did. And Hospice Africa Uganda made liquid morphine.

“I had been one of the doctors who had said to people, ‘Sorry, there is no more we can do. You have to go home,'” says Merriman, of the time she spent working with cancer patients in Singapore starting in the 1960s. There, she says, “I found that patients with cancer were getting every treatment possible with chemotherapy, and then when it didn’t work they were sent home and they were dying in agony.”

So she sat down with a couple pharmacists from the National University Hospital and came up with a formula to make a liquid from pure morphine powder.

An HIV-positive woman
An HIV-positive woman, living alone in a one-room house, speaks with a visiting doctor.

Merriman would eventually be invited to Kenya to set up a hospice care program in Nairobi before founding her own organization in 1993, based in Uganda. At that time, palliative care in Africa only existed in Zimbabwe and South Africa, and the services, she says, were “started out by whites for whites.” Medication was prohibitively expensive for most patients. “The strongest they had there was codeine — if you had money. But if you didn’t have money, you only had aspirin and sometimes nothing at all,” says Merriman.

Today, the organization’s three hospice centers serve some 2,100 outpatients. “It’s not always the pain that’s their greatest worry,” she says. “It’s often ‘What’s going to happen to my children when I die?’ It may be spiritual problems, it may be cultural — things they have to carry out before they die. We try to help with all those kinds of things.”

Relieving pain is step one — and it has many benefits. Patients eat better, sleep better and live higher quality lives, even in their last days, says Merriman.

Cost was one obstacle to pain management that Merriman had to address. Another, which persists in many countries, was a deep-rooted fear of opioid painkillers.

Though morphine is considered the gold standard in palliative care for pain management, in many parts of the world fear of opioid addiction and misuse is so rampant it has a name: opiophobia.

Merriman ran up against opiophobia in Singapore and Uganda, where she says, people thought she was providing morphine so that patients could kill themselves. “And morphine can kill,” she says. But with the right regulations in place, and the right explanation to the patient and their relatives, she says, “it’s very safe.”

For over a decade, the Ugandan government has provided morphine free to the patients of prescribers who are members of a special registry, all trained through Hospice Africa Uganda.

“You’ve got to be careful, everything has to be signed for and we have to follow the regulations,” she says. “But for the last three years, we’ve been making morphine for the whole country.”

Merriman says of the 24,000 patients in total that they have prescribed oral morphine to, “we’ve had no addiction, no diversions. And the patients keep the bottle at home.”

In Uganda, she had to work hard to surmount the fear of opioids. For example, Hospice Africa Uganda worked with narcotics police, teaching them what morphine is and that it’s a legal medication.

“They need to understand that patients can take morphine and that they are not addicted, that it is handed to patients after careful assessment, and that it is a safe medication,” says Dr. Eddie Mwebesa, clinical director at Hospice Africa Uganda. Without police cooperation, he says, “there will be a lot of trouble with patients having their morphine in the home” and in transporting the drug between hospices or patient homes.

Clinicians prescribe the morphine and instruct patients to sip a dose from a marked cup. For adults, it’s usually about a teaspoon every 4 hours. Merriman says hospice workers frequently have to warn people about morphine — not because of the risk of addiction but to explain that it will not wipe out their illness. She says they feel so good after it, they often feel normal again. “They think we’ve cured them,” she says.

Even with the innovations in Uganda, there are still challenges. The organization estimates that only 10 percent of Ugandan patients in need of palliative care can access it.

“The biggest challenge we have right now is the sheer number of patients who need palliative care,” says Mwebesa — he puts the number at 250,000 to 300,000. But there is about one doctor for every 20,000 Ugandans, he says.

A palliative care physician
A palliative care physician visits an HIV-positive patient who lost her family to the AIDS epidemic. She’s resting on a mat outside her home.

Mwebesa says palliative care can cost about $25 each week for one patient. “It doesn’t sound like a lot,” he says, “But actually most people can’t afford it.” Only 2 percent of Ugandans have health insurance, so many families have to pay out-of-pocket to care for sick relatives.

Even though Uganda is far from perfect, it remains in many respects a model country for its neighbors. “We had the minister of Swaziland visit Uganda to see how Uganda reconstitutes oral morphine and then when we went back, they started doing the same,” says Dr. Emmanuel Luyirika, executive director of the African Palliative Care Association. He says the same happened with Rwanda and Malawi.

Merriman is now turning her attention to French-speaking countries in Africa. She says some countries in the region remind her a lot of Uganda back in the ’90s. “They’ve got a fear of morphine. Doctors don’t want to prescribe it because they think if they prescribe it, they’ll be accused of being addicts themselves,” she says. World Bank data shows the region has the world’s highest maternal mortality and lowest national health budgets. And people there largely pay for health care out-of-pocket.

“If you haven’t got money,” says Merriman, “you can’t even get an aspirin.” At age 80, she’s still determined to see that the dying don’t have to face such dilemmas when they seek relief from pain.

Complete Article HERE!

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Palliative and End of Life Care

By Ellen Fink-Samnick

Palliative and End of Life Care

We all know the cost of care at the end of life (EOL) tends to be needlessly wasteful. And we know that, too often, the wishes of patients are ignored, or worse, unknown. As the healthcare system adopts a patient-centered approach, it is important we ask every dying patient and their family what they want. When we do, we find that most would say they want less care and more quality of life in their final days. This is especially pressing today for three reasons

1. There is heightened emphasis on palliative and EOL care, in part, because of Institute of Medicine’s report last year, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life1. In it, experts on death and dying made bold recommendations about how hospitals and healthcare professionals should address palliative and EOL care.

2. Officials from the federal Centers for Medicare & Medicaid Services, Baltimore, said, in July, it would pay physicians to conduct EOL counseling and start a pilot project to pay for hospice care and treatment instead of one or the other. At the end of the four-year project, CMS will evaluate whether it’s better to continue the current form of reimbursement or pay for both.

In this new program, 150,000 dying patients on Medicare will be allowed to choose hospice care to manage pain and suffering, get EOL counseling and medical treatments – including hospitalization – to help them battle illnesses, according to The New York Times2. Research shows that patients, who get palliative care and traditional medical care, have better quality of life and less intense medical care, resulting in lower costs, the newspaper reported.

It’s likely that CMS officials know that providing appropriate care for dying Medicare patients could control some of the steep EOL costs when the healthcare system does what it normally does: provide heroic measures to keep patients alive whether they want or need that.

In a study published in Health Affairs3, researchers at the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai, New York, showed considerable savings when patients with terminal illness are enrolled early in palliative and EOL care programs.

If 1,000 Medicare beneficiaries are enrolled in hospice within 15 to 30 days before death, CMS could save more than $6.4 million and those patients would be spared 4,100 hospital days. If 1,000 dying Medicare patients enrolled in hospice within 53 to 105 days before death, the savings would be more than $2.5 million, adds the study.

3. Brittany Maynard put the importance of end of life care into the news last year. The 29-year-old newly married teacher and resident of California became interested in assisted suicide after her diagnosis with terminal brain cancer in 2013. Under California law, this option wasn’t available. So, she and her husband rented a home in Oregon, which allows assisted suicide. A year later, at least 13 states are pursuing what is called “death with dignity” legislation. Oregon, only Montana, New Mexico, Vermont, and Washington State currently have such laws.

Given these significant developments, it may be more important than ever for healthcare professionals to ask what patients want in terms of palliative and EOL care. When we fail to ask, we are, by definition, no longer providing patient-centered care. Instead, we’re doing what the healthcare system has always done: provide lots of care whether it meets patient needs or not and wasting precious resources in the process.

Fixing this problem shouldn’t be that difficult. We simply need to make sure we’re delivering patient-centered care. To do that, we need to ensure the patient and family are fully engaged in care delivery. But, as we have seen in the past, members of the care team may not be prepared to talk about death and dying. After all, most went to school to learn to care for the living and keep them alive.

Has the care team talked with the patient about what he or she wants? If there was such a conversation, was the family included? Did the care team discuss what the patient wants without the patient being present?

The patient-engagement step is easy to overlook. Healthcare providers, not trained to talk about death and dying, don’t know how to do it; or believe it’s someone else’s job. So, the first step is to ensure that someone lets the hospital or health system know what the patient wants. In many facilities, this falls to the case manager or social worker who ensures the patient gets what he or she needs from the health system.

James McGregor, MD, an expert in palliative and end of life care and senior medical director for Sutter Health, Sacramento, Calif., says, “Addressing the full spectrum of psychosocial, emotional, physical and spiritual needs helps to raise patient and family satisfaction and prolong life. Patients and family members often have questions about palliative and EOL care and need someone to answer them.”

Those who work in palliative and EOL know the value of engaging patients and their families to guide them through these difficult times, explaining an illness and planning. And, they are likely to create a more sustainable healthcare system.

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What working in a nursing home taught me about life, death, and America’s cultural values

by Valery Hazanov

nursing home

 

The first thing I noticed when I began working in a nursing home was the smell. It’s everywhere. A mix of detergent and hospital smell and, well, people in nursing homes wear diapers. It’s one of those smells that takes over everything — if you’re not used to it, it’s hard to think about anything else.

Being in the nursing home is tough. People weep and smell and drool. Sometimes you can go on the floor and hear a woman in her 90s scream, “I want Mommy.”

But it’s also ordinary — just people living together: gossiping, daydreaming, reading, watching TV, scratching their back when it itches.

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It’s an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. “Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?”

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled.

I haven’t gotten used to the smell yet. But I have been thinking a lot about the nursing home and the people who live and die there, and wanted to share what I learned.

1) At the end, only the important things remain

“This is all I have left,” a patient recently told me, pointing to a photograph of himself and his wife.

It made me notice the things people bring to the nursing home. The rooms are usually small, so what people bring is important to them. If they have a family, there will be photos of them (most popular are the photos of grandchildren). There might also be a few cherished books, a get-well-soon card, a painting by a grandchild or a nephew, some clothes, maybe flowers. And that’s about it. The world shrinks in the nursing home, and only a few things remain: things that feel important — like they’re worth fighting for, while we still can.

2) Having a routine is key to happiness

‘m a little lazy. My ideal vacation is doing nothing, maybe on a deserted beach somewhere. I look in terror upon very scheduled, very planned people. Yet I have been noticing that doing nothing rarely fills me with joy, while doing something sometimes does. Hence, the conflict: Should I push myself to do things, or should I go with the flow and do things only when I feel like doing them? Being in a nursing home changed my perspective somewhat: I noticed that all the patients who do well follow a routine. Their routines are different but always involve some structure and internal discipline.

I am working with a 94-year-old woman. She wakes up at 6:30 am every day, makes her bed, goes for a stroll with a walker, eats breakfast, exercises in the “rehabilitation room,” reads, eats lunch, naps, goes for another walk, drinks tea with a friend, eats dinner, and goes to bed. She has a well-defined routine. She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them. And, I think, this is what keeps her alive — her movement, her pushing, is her life.

Observing her, I have been coming to the conclusion that it might be true for all of us. And I often think about her when I am debating whether to go for a run or not, whether to write for a couple more hours or not, whether to finally get up from the couch and clean my apartment or not — she would do it, I know, so maybe I should, too.

3) Old people have the same range of emotions as everyone else

“You are so handsome. Are you married?” is something I hear only in extended-family gatherings and in nursing homes. People flirt with me there all the time. This has nothing to do with their age or health — but rather with whether they are shy. When we see someone who is in his 90s and is all bent and wrinkled and sits in a wheelchair, we might think he doesn’t feel anything except physical pain — especially not any sexual urges. That’s not true.

As long as people live, they feel everything. They feel lust and regret and sadness and joy. And denying that, because of our own discomfort, is one of the worst things we can do to old people.

Patients in nursing home gossip (“Did you know that this nurse is married to the social worker?”), flirt, make jokes, cry, feel helpless, complain of boredom. “What does someone in her 80s talk about?” a colleague asked me. “About the same things,” I replied, “only with more urgency.”

Some people don’t get that, and talk to old people as if they were children. “How are we today, Mr. Goldstein?” I heard someone ask in a high-pitched voice of a former history professor in his 80s, and then without waiting for a response added, “Did we poopie this morning?” Yes, we did poopie this morning. But we also remembered a funny story from last night and thought about death and about our grandchildren and about whether we could sleep with you because your neck looks nice.

4) Old people are invisible in American culture

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

Here’s a picture I see every day: It’s the middle of the day and there is a cooking show or a talk show on, and the host is in her 50s, let’s say, but obviously looks much younger, and her guest is in his 30s or 50s and also looks younger, and they talk in this hyper-enthusiastic voice about how “great!” their dish or their new movie is, or how “sad!” the story they just heard was. Watching them is a room full of pensive people in their 80s and 90s who are not quite sure what all the fuss is about. They don’t see themselves there. They don’t belong there.

I live in Brooklyn, and I rarely see old people around. I rarely see them in Manhattan, either. When I entered the nursing home for the first time I remember thinking that it feels like a prison or a psychiatric institution: full of people who are outside of society, rarely seen on the street. In other cultures, old people are esteemed and valued, and you see them around. In this manic, death-denying culture we live in, there seems to be little place for a melancholic outlook from someone that doesn’t look “young!” and “great!” but might know something about life that we don’t.

There isn’t one Big Truth about life that the patients in the nursing home told me that I can report back; it’s a certain perspective, a combination of all the small things. Things like this, which a patient in her 80s told me while we were looking outside: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

5) The only distraction from pain is spiritual

Some people in the nursing home talk about their physical pain all the time; others don’t. They talk about other things instead, and it’s rarely a sign of whether they are in pain or not.

Here’s my theory: If for most of your life you are concerned with the mundane (which, think about it, always involves personal comfort) then when you get old and feel a lot of pain, that’s going to be the only thing you’re going to think about. It’s like a muscle — you developed the mundane muscle and not the other one.

The saddest people I see in the nursing home are childless

And you can’t start developing the spiritual muscle when you’re old. If you didn’t reallycare about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.

But if you have developed the spiritual muscle — not me, not my immediate comfort — you’ll be fine; it will work. I have a couple of patients in their 90s who really care about baseball — they worried whether the Mets were going to make the playoffs this year, so they rarely talked about anything else; or a patient who is concerned about the future of the Jewish diaspora and talks about it most of our sessions; or a patient who was worried that not going to a Thanksgiving dinner because of her anxieties about her “inappropriately old” appearance was actually a selfish act that was not fair to her sister. Concerns like these make physical pain more bearable, maybe because they make it less important.

6) If you don’t have kids, getting old is tough

The decision to have kids is personal, and consists of so many factors: financial, medical, moral, and so on. There are no rights or wrongs here, obviously. But when we are really old and drooling and wearing a diaper, and it’s physically unpleasant to look at our wounds or to smell us, the only people who might be there consistently, when we need them, are going to be either paid to do so (which is okay but not ideal) or our children. A dedicated nephew might come from time to time. An old friend will visit.

But chances are that our siblings will be very old by then, and our parents will be dead, which leaves only children to be there when we need it. Think about it when you are considering whether to have children. The saddest people I see in the nursing home are childless.

7) Think about how you want to die

José Arcadio Buendía in One Hundred Years of Solitude dies under a tree in his own backyard. That’s a pretty great death.

People die in different ways in the nursing home. Some with regrets; others in peace. Some cling to the last drops of life; others give way. Some planned their deaths and prepared for them — making their deaths meaningful, not random. A woman in her 90s recently told me, “Trees die standing tall.” This is how she wants to go: standing, not crawling.

I think of death as a tour guide to my life — “Look here; pay attention to this!” the guide tells me. Maybe not the most cheerful one, slightly overweight and irritated, but certainly one who knows a lot and can point to the important things while avoiding the popular, touristy stuff. He can tell me that if I want to die under a tree in my backyard, for example, it might make sense to live in a house with a backyard and a tree. To you, he will say that if you don’t want any extra procedures done to you at the end, it might make sense to talk about it with the people who will eventually make this decision. That if you want to die while hang-gliding over an ocean, then, who knows, maybe that’s also possible.

I think of death as a tour guide to my life — “Look here; pay attention to this!”

My father, who has spent the past 30 years working in an ICU as a cardiologist and has seen many deaths, once told me that if he had to choose, he would choose dying well over living well — the misery of a terrible, regretful death feels worse to him than a misery of a terrible life, but a peaceful death feels like the ultimate reward. I think I am beginning to see his point.

I am 33. Sometimes it feels like a lot — close to the end; sometimes, it doesn’t. Depends on the day, I guess. And like all of us, including the people in the nursing home, I am figuring things out, trying to do my best with the time I have. To not waste it.

Recently, I had a session with a woman in her 90s who has not been feeling well.

“It’s going in a very clear direction,” she told me. “Toward the end.”

“It’s true for all of us,” I replied.

“No, sweetheart. There is a big difference: You have much more time.”

Complete Article HERE!