Category: Caregiving

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A good death

Yong Nie had no papers, no contact with family – and one last wish.

By Kate Legge

[F]or 20 years Yong Nie dodged Australian authorities by lying low, staying out of trouble, earning cash in hand through odd jobs, sleeping rough and keeping to himself. But when he developed an aggressive cancer, the game was up. Gaunt, jaundiced, his once dark hair streaked grey, the 68-year-old illegal immigrant turned up at the emergency department of Sydney’s St Vincent’s Hospital doubled in pain and fearing deportation. But instead of being thrown out, locked up and shipped off, he was welcomed by palliative care staff who took him in as one of our own.

The good death at the heart of this story confirms the generosity of ordinary people performing exceptional acts of compassion without triumphalism or reward because this is what they do every day. Few of those who crossed Nie’s path during the two months he spent at the inner-city hospital founded by the Sisters of Charity will forget him. They couldn’t cure his disease-ridden body but they worked tirelessly to heal a terrible burden in his soul. Those drawn to fulfil his dying wish came from different faiths and countries. There were doctors, nurses and social workers employed in this Catholic health service; monks and volunteers from the Nan Tien Buddhist temple near Wollongong; a Chinese community cancer support agency and Australian Embassy officials in Beijing. Racing against death’s advance, they embraced this fringe dweller who had fallen foul of officialdom with gracious gestures that celebrate the humanity of frontline carers while reminding us how lucky we are to live in a country where goodness thrives.

Yong Nie had not spoken to his wife or ­daughter since leaving the sprawling Chinese port city of Tianjin two decades ago bound for Australia, possibly on a business visa. It was a mission that went awry, humiliation eventually driving him to a flimsy existence with no fixed address, floating on the margins of a society he failed to join. The longer he hid from his family in silence, the harder it was to bridge the distance. He had no Medicare card, no identifying papers, no tax file number, no information about next of kin, and savings of $72.46 when he was admitted to palliative care in May. “There was nowhere else for him to go,” says ­Professor Richard Chye, director of the Sacred Heart palliative care unit at St Vincent’s. “We could not put him on the street. His cancer had spread to his liver; it was too late for treatment.”

Amid grim accounting of refugees around the world as well as those in offshore detention centres closer to our shores, here is an oasis where generosity of spirit is blind to colour, creed and ­citizenship. It doesn’t matter where you’ve come from, since everyone in these wards is contemplating death and energies are focused on journeying comfortably and peacefully to this end. “From a healthcare perspective we were not obliged to report him as an illegal immigrant,” Chye insists. “We provide spiritual care and support and if we reported him to the authorities he would have a lot more emotional angst and worry.”

With only a smattering of English, the patient spent the first week alone, sick and scared as social workers and nurses tried to gently tease out details that would help them look after him. “His biggest fear was that he would be kicked out of hospital,” says Michelle Feng, a Chinese-born nurse who speaks Mandarin. “But I reassured him that was not going to happen.” As luck would have it, her husband emigrated 16 years ago from Nie’s home city, southeast of Beijing. Concerned mainly with alleviating his physical duress, she did not pry. “He told me he’d lost contact with his family, that he had not spoken to them since he came to this country. I was curious,” Feng concedes.

“How can you have a father or husband and no contact? Maybe he was afraid to contact them,” she wonders before dismissing these niggling thoughts. “For me, a patient is a person. They all have their own needs and we have to adapt to them. He is a ­person who has been living underground but I didn’t ask the reason. I don’t know why. At the end of life everyone deserves to be treated as a human being. Really, we don’t have a lot of time.”

Prof Richard Chye with St Vincent’s Hospital palliative care unit staff; at right, Michelle Feng (white shirt) and Trish McKinnon (in black).

Social worker Trish McKinnon arranged for Mandarin-speaking volunteers from the Chinese community support group CanRevive to visit “Mr Nie” so they might better understand his circumstances and needs. Although he had inhabited a shadowland of sorts, he counted a few as friends. He’d helped a single mother in the Chinese community and for many years he’d served as a volunteer at the Nan Tien Buddhist temple, an hour from Sydney. There he got to know Stanley Wong, who came here from China 24 years ago. They cooked together for temple functions. Wong speaks limited English but tells me “we help each other”. Informed of Nie’s rapid decline, he arranged a roster of hospital visits with another Buddhist so that there would be bedside company for him almost every day.

Dr Kate Roberts, a passionate young member of staff, recalls witnessing the turnaround in the patient’s demeanour as the threads of connection were drawn together. “In the first week he had zero visitors. He was severely jaundiced, hardly speaking, and a ­little suicidal. He used to say, ‘Send me back to China or send me to a train station and I’ll sit there until I die’. But then people from the Nan Tien temple began to trickle in and he began to smile. He did a 180-degree switch.”

Michelle Feng says the presence of the Buddhists calmed him. “He’d been so worried and anxious and not able to sleep. But from the first time the Buddhists came to pray around his bed he told me, ‘The worry is gone’. ” He began to eat, requesting white rice congee — a simple dish of boiled rice with no seasonings — for every meal. Feng brought him pickles from home to flavour his food. Stanley Wong arrived with nourishing broth. Gradually Nie gained the confidence and courage to express his urgent desire to reconcile with the family he’d left behind.

Before coming to hospital he had approached the Red Cross for help in contacting his wife and daughter but the search had drawn a blank. Wong says Nie was “too scared” to approach any other agency. But the longing to make amends troubled him deeply. “He realised he was coming to the end of his life and his final wish was to contact his ­family,” says McKinnon. “He was too ill to travel and he had no passport so everyone went out of their way to achieve the goal of a man who was going to die. A reaffirmation of family began and there was this wonderful confluence of palliative care principles and Buddhist acceptance.”

The notion of “existential resolution” is ­central to the Sacred Heart unit’s philosophy of minimising pain and discomfort in the dance towards death while resolving emotional agitation and distress. “We try to ensure patients are physically and emotionally calm and prepared, ensuring peace at the end of life, so we try to assess appropriate information without being intrusive,” says McKinnon.

Once members of the palliative care team became aware of how much a reconciliation with his family meant to Nie, they enlisted the support of Wong, who had a friend who knew somebody in Tianjin, a vast metropolis with a municipal population of more than 15 million. Feng told Nie the city had grown and developed like topsy since his departure but hopes were pinned on the location of his elder brother, a secondary school physics teacher. Wong’s messenger found him within four hours of posting an alert on a missing person’s site.

This breakthrough led to an exchange of phone numbers for Nie’s wife and daughter, as well as news of a granddaughter, now four years old, and the revelation that Nie’s sister, who is based in Hong Kong, was visiting her son in Melbourne. She tells me through her English-speaking granddaughter that she had no idea of her brother’s whereabouts for the past 20 years: “He disappeared.” Those intent on facilitating a reunion stayed clear of the details that had conspired to keep members of this family apart. Feng set up the Chinese version of Skype so Nie could communicate with his wife and daughter. “It was quite amazing,” she recalls. “His wife and daughter were in tears. Everybody was crying. I didn’t want to intrude.”

A plan took shape for getting them to ­Australia. Wong shared the view of Sacred Heart staff that reconciliation would not only console the patient but also salve the heartache and bitterness of relatives bewildered by his unexplained absence for two decades. “He left his ­family. No contact. No money,” Wong says, still perplexed, even though he knows a little of the gambling problems that beset his friend. “He lost money. He couldn’t face them.” Now was not the time for recriminations. “They were very upset, very angry. It was very difficult. I told his daughter, ‘You should come and see your father otherwise you will never see him again’. ”

Wong collected money to help with the reunion. He pleaded with Nie’s wife and daughter to make the trip, convinced they would feel lighter for this rare chance to say goodbye. “I told them this was a time for forgiveness. Now was the time to put everything away, all the unhappy ­stories to one side so they could feel peace.” As Nie’s health deteriorated, hospital staff wrote to the Immigration Department to hasten visitors’ visas issued by embassy staff in ­Beijing. “It was absolutely amazing,” McKinnon says of the frantic efforts to expedite their journey before Nie took his last breath. Wife and daughter arrived at the hospital and were accommodated in a room near his. “We were so anxious about it. From my point of view this was unfinished business and I was sure that a reaffirmation of the family connection would help enormously … I walked them along the corridor to the room, explaining his physical state to prepare them. It was quite ethereal. When they walked in, he introduced them to us. He said, ‘This is my wife. This is my daughter.’ It was an absolute statement of connection,” she recalls.

“There were tears. They were quite overwhelmed by the face-to-face intimacy but they were pleased this had happened. There was not a lot of discussion about the intervening years. This was not the time to trawl through the past. Obviously there was grief from the missing years but there was no castigation at all, just a real sense of solidarity at the end of life.” Nie’s wife brought with her a yellow cloth inscribed with Chinese characters and laid it under his head. Wong explains this Buddhist tradition encourages serenity in death. “This releases the body and brings peace and silence before people pass away.”

Nie died the next morning. A senior monk from the Nan Tien temple was called in to lead prayers and chanting in the room where he lay. “It was very beautiful,” Wong says of his friend’s final hours. “I think we should all become Buddhists,” laughs McKinnon. “It was a wonderful outcome in every way.” Nie’s daughter accompanied the body to the temple for cremation and before their return to China they visited Nie’s sister in Melbourne. Another link mended in this long broken chain.

Complete Article HERE!

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Healthcare and the Human Spirit

Walt Whitman on the Most Important Priority in Healing the Body and the Soul

 

“There is something in personal love, caresses, and the magnetic flood of sympathy and friendship, that does, in its way, more good than all the medicine in the world.”

 
By Maria Popova

[I]n the early 1860s, six years after he self-published Leaves of Grass, Walt Whitman (May 31, 1819–March 26, 1892) began volunteering as a nurse in the Civil War. Bravery and tragedy were odd bedfellows among the wounded and dying soldiers whom he visited, and bearing witness to their courageous suffering moved him deeply. These impressions permeated his later poetry and informed his prescient ideas about democracy.

Whitman recounted his wartime experience in a diaristic piece titled “Hospital Visits,” published in The New York Times in December of 1864 and later included in the indispensable Library of America volume Whitman: Poetry and Prose (public library).

“This tremendous war goes on,” Whitman writes. “Every family has directly or indirectly some representative among this vast army of the wounded and sick.” Overcome with irrepressible compassion for these men (and, lest we forget, the lot of unheralded women), he set out to alleviate their suffering by lifting their spirits — an intuitive application of what modern scientists know about how our minds affect our bodies.

Whitman recounts his daily rituals of care:

Devoted the main part of the day, from 11 to 3.30 o’clock, to Armory-square hospital; went pretty thoroughly through wards F, G, H, and I — some fifty cases in each ward. In Ward H supplied the men throughout with writing paper and a stamped envelope each, also some cheerful reading matter.

Whitman brought the soldiers all kinds of gifts to lift their spirits — from apples, oranges, figs, gingersnaps, and “first-rate preserved berries” to pocket change and small bills. “The poor wounded men often came up ‘dead broke,’” he explains, “and it helps their spirits to have even the small sum I give them.” His generosity extended beyond the material and into the metaphysical — he lent them his poetic talent and helped them write letters home, even love letters. (How electrifying to imagine a love letter to a young wife ghost-written by none other than Walt Whitman and to wonder how many such miraculous treasures might exist.)

But the greatest gift with which Whitman graced the soldiers was his generous, loving spirit. He describes his daily hospital routine and the larger ethos behind it:

My custom is to go through a ward, or a collection of wards, endeavoring to give some trifle to each, without missing any. Even a sweet biscuit, a sheet of paper, or a passing word of friendliness, or but a look or nod, if no more. In this way I go through large numbers without delaying, yet do not hurry. I find out the general mood of the ward at the time; sometimes see that there is a heavy weight of listlessness prevailing, and the whole ward wants cheering up. I perhaps read to the men, to break the spell…

He cautions against letting such charity bleed into condescension. (Then again, as Seamus Heaney reminded us, “the Latin root of condescension means we all sink” — and what more worthy an object of compassion than these wounded soldiers, literally sunk to the ground on the battlefields?) Whitman urges for the preservation of human dignity even amid these most dispiriting of circumstances:

He who goes among the soldiers with gifts, etc., must beware how he proceeds. It is much more of an art than one would imagine. They are not charity-patients, but American young men, of pride and independence. The spirit in which you treat them, and bestow your donations, is just as important as the gifts themselves; sometimes more so.

In a sentiment that jars with its devastating timeliness today, when the mainstream healthcare system has reduced patients to data points each allotted a set number of minutes to be logged on an iPad by their productivity-strained physician, Whitman adds:

Few realize that it is not the mere giving of gifts that does good; it is the proper adaption. Nothing is of any avail among the soldiers except conscientious personal investigation of cases, each for itself; with sharp, critical faculties, but in the fullest spirit of human sympathy and boundless love. The men feel such love more than anything else. I have met very few persons who realize the importance of humoring the yearnings for love and friendship of these American young men, prostrated by sickness and wounds.

[…]

To many of the wounded and sick, especially the youngsters, there is something in personal love, caresses, and the magnetic flood of sympathy and friendship, that does, in its way, more good than all the medicine in the world… Many will think this merely sentimentalism, but I know it is the most solid of facts. I believe that even the moving around among the men, or through the ward, of a hearty, healthy, clean, strong, generous-souled person, man or woman, full of humanity and love, sending out invisible, constant currents thereof, does immense good to the sick and wounded.

Complement Whitman: Poetry and Prose with the beloved poet on why a robust society is a reading society and this wonderful illustrated homage to his most beloved work, then revisit the science of how our psychological and physiological states affect one another.

Complete Article HERE!

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Fighting for a good death

By The BBC

handholding

[M]alawi is one of the world’s least developed countries with very primitive health care. In March 1998, nurse Lucy Finch had visited her native Malawi to care for her sister who was dying of Aids, when hearing a young man’s agonising death made her decide to come back and set up Malawi’s first and only hospice.

In my view, the key ingredients for a “good death” are probably the same all over the world, in all cultures. The first is to know that you are about to die, not to have it hidden from you, and the second is to be kept, as far as possible, pain-free but alert.

This will give you the chance to prepare yourself, and those you care about, and thus approach your death with some equanimity. It is also preferable to be at home, and with close loved ones. This is your death, no-one else’s, and you want to handle it your own way.

In sub-Saharan Africa, although all of the above would be desired, the access to a pain-free death is highly unlikely unless you are near to a centre like ours at Ndi Moyo.

Local hospitals are extremely under-resourced
Local hospitals are extremely under-resourced

My own commitment to bringing the possibility of a pain-free death to my native Malawi began one night when I was spending time with my sister who was in hospital.

In the next room, a young soldier was dying in terrible agony because no-one had the drugs necessary to relieve his excruciating pain. I will never forget listening to his harrowing screams, as, all alone, he faced both suffering of such intensity it was tearing his very being apart, and the terror of the unknown journey into death ahead of him.

That poor young man, though he never knew it, changed my life and indeed the lives of the many others who were to be helped by the palliative care I determined that night to introduce.

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The scourge of the HIV/Aids pandemic which swept sub-Saharan Africa in the 1980s like a biblical pestilence made more urgent than ever the need to assist people to a pain-free death.

The aggressive cancers associated with HIV did not carry off the elderly, but the sexually active age groups – the young and middle-aged. Unless palliative care could be introduced, the chances of a “good death”, pain-free but alert, were minimal. And that is how we started.

Unlike hospices in the West, we operate what we call “hospice at home”, and at our out-patients facility. Generally speaking, patients in Africa want to be with their families and close to their ancestors at this time of life. The caring atmosphere is generally missing within hospitals in Malawi because they are so under-resourced – for example, you need to take a relative with you, otherwise there would be no-one to give you a wash or feed you.

Providing palliative care at home means patients can remain in their community
Providing palliative care at home means patients can remain in their community

It is important that palliative care starts at the point of diagnosis, not just as death becomes imminent. This provides an opportunity for the patient to deal with their fears about the future of those they leave behind, as well as fears for themselves.

These fears are entirely understandable because Malawi only has two oncologists for a population of nearly 17 million, and has no dedicated cancer centre. The available chemotherapy is largely palliative rather than curative.

There is also lack of early diagnosis so by the time the patients come to us the cancer is already advanced and for them the only option is palliative care.

Some 50% of people in Africa do not see a health worker their entire lives. They may use herbal medicines and traditional healers which are cheaper than Western-trained health workers. For example, in Uganda there is one traditional healer to 450 people and one doctor to 20,000.

Jonathan was suffering from oesophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
Jonathan was suffering from esophageal cancer and HIV. The bottles contain morphine which is an affordable way for patients to manage their pain at home.
His family wait outside his hut
His family wait outside his hut

Our care is holistic, which means that our trained staff multi-task in the relief of social, psychological and spiritual pain, as well as physical, whereas in the West different professionals would deal with different aspects of care. We know that unless we deal with these other aspects of pain – the social, the psychological and the spiritual – the physical pain cannot be managed.

Ndi Moyo grows herbs as an affordable way to help their patients:

  • Lemon grass helps patients excrete toxins
  • Aloe is a good balm for wounds and acts as a useful laxative
  • Artemisia has powerful immunity-boosting properties
  • Papaya sap is useful as an antiseptic
  • Vinca rosa lowers the white blood cell count

Source: Ndi Moyo

Holistic and extended care offers the terminally ill the time to make peace with any with whom they have been in conflict, the chance to forgive and be forgiven, the chance to renew love and be loved.

I feel that sometimes in the West it is easier for a doctor to suggest another treatment to a patient rather than to have the more difficult conversation about whether it may be better not to continue to treat a serious illness, partly because expectations in the West are higher.

Holistic palliative care as practised here is not about adding days to life, but adding life to the days that remain.

Complete Article HERE!

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At 83, this patient advocate is still passionate about end-of-life care in Maine

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area -- first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.
Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area — first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

By Meg Haskell

EDDINGTON, Maine — Back in the 1980s — not all that long ago, really — hospice was essentially unknown in this country. Death, fearsome and mysterious, was a taboo topic in the health care setting. Doctors, trying to live up to their omnipotent reputations and avoid lawsuits, employed all possible measures to save lives, even when there was little or no hope for a cure, even at the natural end of a long life.

Patients with a terminal diagnosis often were not even told they were dying. They were hospitalized and endured painful, exhausting and expensive interventions instead of being provided with dignity, comfort and support in their final days. Because the focus was on cure, not comfort, their pain and anxiety often were poorly managed. Family members were also kept in the dark and found little support in preparing for loss or responding to grief.

Much has changed over the course of the past few decades. All over the country, hospice care is now a welcome, accepted and affordable model for providing comprehensive comfort and support to the dying and their loved ones while also cutting unproductive spending in the health care system.

While many factors have played into the rise of hospice nationally, no one has been more instrumental in bringing about this critical change in the northern half of Maine than area resident, registered nurse and passionate hospice advocate Patricia Eye.

Eye, a native of Machias who trained at Eastern Maine General Hospital School of Nursing, spent years traveling the globe in connection with her then-husband’s diplomatic career. She found ways to practice nursing wherever they were posted. She had encountered a hospice-like philosophy of care in other countries and while working at a children’s hospital in northern Virginia. It was in Virginia, too, where she first encountered the teachings of end-of-life advocate Elizabeth Kubler-Ross, whose revolutionary 1969 classic, “On Death and Dying,” sought to normalize death and outlined a five-stage process of healthy grieving.

“She was speaking my language about end-of-life issues,” Eye said during a recent conversation at her home. “That’s when I knew what I was going to do with the rest of my life.”

A patient advocate at heart

When Eye returned to the Bangor area in 1981, she encountered a health care community that had barely begun to grapple with end-of-life issues. A group calling itself COPES — no one seems to remember now what the acronym stood for — was meeting at Eastern Maine Medical Center, trying to organize a nonmedical, all-volunteer system of home-based support for dying patients. Beyond that, there was silence on the issue of hospice.

But by the time Eye semi-retired last year, there were at least five agencies delivering Medicare reimbursable hospice services in the Bangor area, helping thousands of residents of all ages live out their days and die peacefully in their homes. Eye has been a persuasive presence throughout this growth period, providing direct patient care, helping organize several of the agencies, working toward all-important Medicare certification and, in 1994, establishing her own agency, New Hope Hospice in Eddington.

“Some people’s personalities just resonate at a level that is deep and reflective,” Kandyce Powell, the longtime director of the Hospice Council of Maine, said. She’s known Eye professionally “for so long I can’t even remember,” she said. “Pat’s heart and soul have always been sensitive to the deepest needs of the people she cares for.”

Despite Eye’s soft-spoken ways and gentle demeanor, Powell said, she has been a determined advocate for the business-side growth of hospice, from the all-volunteer COPES model to a more structured and regulated system that is now paid for and supported by Medicare, Medicaid, veterans benefits and most private insurances. That transition has been critical to the expansion and consistency of hospice care across Maine, Powell said, and its availability to all Mainers regardless of ability to pay.

At the bedside, in the conference room and in policy debates, Powell said, “Pat has always been an advocate, ethically and morally, for the right to die. She has always done what was best for her patients.”

What is hospice?

Hospice, a longtime option in Great Britain and some European countries, is an end-of-life model that promotes the comfort and dignity of terminally ill patients over the possibility of cure. Originally considered an alternative for the very elderly and individuals with incurable cancer, hospice care is now available in this country for patients of all ages with any kind of untreatable, terminal illness.

Hospice provides highly individualized medical, emotional, spiritual and practical support for patients with six months or less to live and for their families and loved ones. Services, both paid and volunteer, are coordinated by the providing agency and delivered in the home, in a residential facility such as a nursing home or in a specialized hospice residence. Additionally, some hospitals set aside space for the delivery of hospice services to inpatients who cannot be adequately cared for at home.

In Maine, approximately 25 agencies deliver home hospice services, including medical and nursing care, clergy visits, social services, nutritional advice, visiting companions and more. Agencies also deliver equipment such as hospital beds, walkers and bedside commodes. Most agencies in Maine are nonprofit. Many are affiliated with larger health care systems; a few, such as New Hope Hospice, are independent.

In addition, there are four residential hospice “homes,” in Auburn, Scarborough, Rockland and at the Togus VA Medical Center near Augusta. A fifth hospice home will soon be built in Presque Isle. Greater Bangor doesn’t have one.

The artist's rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.
The artist’s rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

An ‘evangelist for hospice’

It was not always like this, according to Sr. Mary Norberta, the former president and CEO of St. Joseph Healthcare in Bangor. Now retired and living in Connecticut, Norberta recalled that the Catholic organization in the early 1980s investigated the possibility of establishing an inpatient hospice unit at St. Joseph Hospital. Without a reliable funding source, it couldn’t work.

“We decided a home-based volunteer program would be more financially feasible and reach more people,” she said. Eye, who had been working on the cancer unit at EMMC and meeting with the COPES group there, moved over to St. Joseph to help set up the home hospice program.

“Pat and [social worker] Sr. Mary Romuald were the pioneers,” Norberta said. “They would trade off night shifts to sit with patients in their final moments.” In addition, the two recruited and trained a dedicated cadre of volunteers to help support patients and their families.

In those early days, Eye was persistent in telling patients the hard news of their terminal status, sometimes against doctors’ wishes. Patients must understand their condition in order to enter hospice care.

“She had tremendous compassion and she was never pushy about it,” Norberta said, “But she was always able to tell people the tough things they needed to hear.”

Dr. Toby Atkins, a primary care provider in Bangor for about 40 years, was also part of the hospice startup at St. Joseph Hospital. He recalled that there was early confusion about the role of hospice workers, who, unlike home health nurses, aimed to keep patients home instead of sending them back to the hospital when their conditions worsened.

“The whole idea of the ‘do not resuscitate’ order was just getting developed,” he said, and some health workers, including visiting nurses and ambulance crews, refused to honor it. Atkins, who now serves as the medical director at Community Health and Counseling Services in Bangor, said Eye was key in educating doctors, nurses and other providers about the intent and the importance of the DNR order, which allows terminal patients to die naturally without the trauma of medical interventions aimed at “saving” them.

“Pat was a real evangelist for hospice,” Atkins said. “She got right into her patients’ lives and provided lots of support, lots of services.”

Still looking ahead at 83

In 1984, Congress directed the federal Medicare program to pay for hospice care. With guaranteed funding — and no small amount of regulation and oversight — provider agencies have since blossomed across the country. Hospice, not long ago a controversial, hard-scrabble, grass-roots effort, is now a well-established and respected player in the national healthcare system.

These days, Eye lives with her son John, 52, and a menagerie of geriatric dogs and cats in a comfortable old farmhouse in Eddington. At 83, she remains active in her chosen field, providing community outreach and clinical support for New Hope Hospice.

She has weathered some deep sorrows. She lost her 58-year-old daughter, Connie, to cancer last year. Another child, her son Lance, suffered with mental illness and took his own life, years ago, at age 28. Her marriage ended in divorce in 1985.

But she has blessings, too. She had a leaky heart valve repaired recently but is otherwise in good health. She is close with her other daughter, Kitty, a nurse who works locally in long-term care.

She enjoys her life, her family, her home and all the pets — “They’re all rescues and strays,” she said — who share it with her.

And she continues to love her work. “To do this work, you cannot help but be close to God,” she said.

Thanks to all the traveling she did in the first half of her life, she feels at ease with many world religions. “It doesn’t matter. We all have the same god,” she said. “Religion really just gets in the way.”

If she has a burning wish, it is this: to see New Hope Hospice build the residential care facility she envisioned when it first opened for business.

“My theory is that every community should have a small, inpatient hospice home,” she said firmly, “even if it’s just two beds.”

She produced an architect’s drawing of an eight-bed, bungalow-style home. “We already own a lovely piece of land for it,” she said, brushing off the dust. “ And there’s such a need in this area. It’s just a matter of finding the money.”

And with that, it’s clear that nurse Pat Eye is still advocating for her patients, still intent on identifying and serving the end-of-life needs of Eastern Maine.

Complete Article HERE!

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A united family can make all the difference when someone is dying

Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.
Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.

By Samuel Harrington

The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.

Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.

So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.

First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?

My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.

“What should I do if he falls and hurts himself?”

“If he is in pain, call 911, then call me.”

“What should I do if he seems to be having a stroke?”

“Call me. And if you can’t get me right away, call 911.”

“What should I do if he gets pneumonia?”

“Call me.”

“What if I find him dead in bed?”

“Wait until he is cold and blue, then call 911.”

“Okay. I get it.”

After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.

Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.

Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.

Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.

Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.

Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.

Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”

The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.

Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.

This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.

Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.

I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”

Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.

In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.

What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?

Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become ­guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.

Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).

“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.

Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.

Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.

Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.

More information about POLST can be found at polst.org.

Complete Article HERE!

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Hospice nurse Renee Beccue helps ease patients’ last days

Hospice care provides a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

By Melisa Rile

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Renee Beccue

Renee Beccue helps ease the process of dying.

She is an on-call registered nurse with Lower Cape Fear Hospice in Wilmington. Beccue, originally from Buffalo, N.Y., had primarily worked in intensive care units with burn patients.

She had accompanied doctors when they announced deaths of patients to their families and saw that this experience could allow her to transition into hospice nursing.

“Hospice and palliative care is a growing field,” said Beccue.

Part of what hospice care provides, is in-home equipment for patients, such as hospital beds, so they can spend their last days in the comfort of their own home. There is also a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

And while hospice doesn’t provide in-home, around-the-clock medical care, it does have providers on call to help manage medical needs.

That’s where Beccue comes in.

Beccue doesn’t have a fixed caseload of patients, but she receives calls at night when hospice patients are in need of medical care that the family or caregiver feels is outside their capability. Beccue travels to a few counties for on-call needs, including Onslow and Pender as well as New Hanover.

The calls she receives can be anything from discussing fall prevention to pronouncement of death. Part of the medical care received in home is to help the patient remain in the home with fewer trips to the hospital.

“We try to prevent readmission to the hospital,” Beccue said.

Her care as a hospice nurse is twofold, therapeutic listening and education. Education consists of teaching the family or caregivers the basics of caring for a sick person who will continue to decline. Beccue calls this the “palliative care mindset, not curative.”

She teaches the family to change the bed and bathe the patient while he is still in the bed. Beccue says the care needs of hospice patients are constantly changing because they continue to get sicker. She also teaches the family what they can expect to see from the patient depending upon his disease.

Beccue also helps patients understand what they are experiencing. She consoles them and emphasizes the importance of “judgment-free” care as a hospice provider. Beccue realizes that many people are not familiar with the medical terms being used and she sincerely tells families and patients to call her with any questions.

Beccue primarily tends to the patients’ medical needs, but in the process of dying, people often work through a life review. Many patients do not truly grasp their prognosis for a variety of reasons until Beccue arrives at their home. She sometimes helps patients face the truth that she has been assigned to them because they have a prognosis of six months or less left to live.

“That’s when they cry,” Beccue said.

She tries to be the voice of reason and help them to understand that the feelings they are experiencing are normal. She can assist with adjusting medication when anxiety is overwhelming and to help mitigate physical pain.

Beccue says it’s important to allow patients to feel. “You can’t make a stage 4 diagnosis nice,” Beccue said.

She has seen patients move through bitterness, anger and unresolved issues and hospice does provide social workers to help counsel the patient through that process.

While death is frightening for many people, Beccue sees it as a part of living. And death isn’t all scary and sad. Many times she turns on music for patients, helps them sit by their favorite window and watch the birds they’ve enjoyed their whole lives. Also, the presence of beloved pets is important to comforting patients.

Some patients want to sit and look at the garden they worked in for years. Beccue says one patient asked to sit by the window and watch the golf course every day.

After years of being with hospice patients Beccue has learned a few tips about working with the dying. She recommends being upfront and honest about prognosis, allowing honest feelings about that prognosis and ultimately finding peace and joy in death, which is the ultimate rite of passage for all of us.

Complete Article HERE!

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First-hand experience in tough end-of-life choices

by Sandy Bauers

Donna Kaufman (left) and Monica Bhargava in "Extremis," a documentary on end-of-life care.
Donna Kaufman (left) and Monica Bhargava in “Extremis,” a documentary on end-of-life care.

[T]oo often, we put off the discussion. It’s too uncomfortable.

meredith-mackenzieThen, suddenly, a parent or spouse is in the emergency room, and the doctors need to know: The outlook is bleak. How aggressive should they be in their treatment? What would your loved one want?

In September, Netflix released a documentary, Extremis, that aimed to bring the issue to a wide audience.

It struck a chord with Meredith MacKenzie, an assistant professor at the Villanova University College of Nursing, who specializes in end-of-life health-care issue. She recently spoke to us about it.

You watched the film. Was it good?
It was a good representation of just what these conversations look like in the intensive-care unit, or in a hospital setting in general.

I think most people think they are either going to be walking down the street one day and have a massive heart attack and keel over and die, or they are going to go to sleep one night and never wake up. Here’s the problem with that: Especially among older Americans, a very, very small number are going to die suddenly. Most are going to die in a longer, more drawn out process. You’re going to get sick, but it won’t be clearly obvious that you’re going to die right away. You’ll have this gradual decline. Over half of Americans will die in the hospital setting. Among those 65 and older, more than a fifth will die in the ICU.

But ICUs and hospitals in general are not good places for decision making. They are really crowded, really noisy. Alarms are going off. Machines are beeping. Carts are being wheeled by in the hallway. You’ve got nurses and doctors coming in and out. People need to start thinking about this before getting to the hospital, before the ICU.

The film showed how everyone struggles with this. One physician said, “Your mother is unlikely to wake up. Even if she does wake up, it is not going to be a great quality of life.” Those conversations are hard. They’re hard for families. They’re hard for doctors. They’re hard for nurses. And they’re hard for patients.

Let’s talk about the families.
As the film was closing, we heard the endings of the patient. But we never heard the ending for the loved ones, the family. My research is focused on family caregivers because they are the survivors of end-of-life care. How end-of-life care went has profound effects for a family. The likelihood of depression, suicide, guilt over what happened, it all hinges on what happened those last few weeks or days of life.

Family members in the ICU are terrified they are going to make the wrong decision. They have to keep living and think about the decisions they made, in some cases agonize over the decisions they made. Sometimes, they opt to do everything because they are afraid they are going to have to live with “Did I kill my mom? Would a miracle have happened?” Or, on the flip side, I’ve had family members who have done everything and then say, “I feel like at the end that we were torturing her.” That is a lot to live with.

What about your own journey through this?
I started out in the ER. I did not want to research end-of-life. My job was to save people’s lives. But I really struggled with seeing patients for whom we went to extreme measures to “save their lives.” I will never forget my first code in the ER. The patient was brought in by ambulance. We worked the code for 45 minutes and finally got a heartbeat back. And we were all celebrating. But I remember having this sinking feeling: He had been unconscious for so long. He was in the ICU for six days and ended up dying without ever regaining consciousness. I remember thinking: Did we do the right thing? He had tubes down his throat, multiple lines in his veins, a catheter, a feeding tube. He was on a ventilator. We had also done chest compression, so his ribs were broken, his chest was bruised, his face was bruised. I don’t know that we did the right thing.

Now, I work with a lot of older adults, many with heart failure, which is a really common diagnosis. One in five will die in a year. I start the conversation by asking them, “What is the most important thing in life? How do you spend your day? If you could not do that, would life still be worth it to you?”

I had one older gentleman who spent most of his time sitting at the kitchen table, drinking tea, chatting with his wife, seeing children and grandchildren or neighbors. This was very important to him. I said to him, “You are going to get sicker. I want to talk about at what point might you say you don’t want to go to the hospital anymore?” He said, “I don’t know that I do. I hate the hospital. I never get sleep. They limit visits.” So I said we could talk about other alternatives.

He lived a good three years, a little longer. And he passed away with hospice at home. In his last six months, he had a couple episodes that we managed, symptom-wise. He ended up with, as far as deaths go, a pretty good death. He was able to talk with family and hang out at the kitchen table up to the end.

So, more people should have advance directives and living wills?
For the last 20 years, we have been on a major kick to get people to complete advance directives. We have done a semi-good job. Among Americans 65 and older, about 45 percent have completed advance directives. That’s the good news.

But there have been a couple interesting studies showing that even among people who have completed advance directives, if you ask them if they have shared it with their primary care provider? No. Have you talked about it with your family? Well, no. There is a big difference between having that piece of paper and anyone else knowing about it.

The second challenge is that most advance directives, including the Pennsylvania official form, have wording that says “if you are in a state of permanent unconsciousness . . .” Here’s the thing: When does your health-care provider know you’re in a permanent unconscious state? Families say to me, “Is our mom ever going to wake up?” I can give them some percentages. Can I ever say with absolute certainty this person is never going to wake up? Until they’re dead, that’s a tough call.

This has all been rather grim. Any encouraging words?
It is true that over half of Americans die in the hospital. But there’s the other almost half who die at home, who die in an assisted-living facility. I think what people need to know is that it is possible to have a meaningful, peaceful, symptom-controlled death outside the hospital. It is possible to give yourself the time you need to say the things you need to say and to have the experience you might want to have. For patients who opt for hospice, they actually live longer than patients who decide to have aggressive care. It’s one of the odder things of life.

It’s not about letting someone die. It’s about acknowledging that death is inevitable. No one can cheat death forever, but we can have some say in how it happens.

One of the most important things is, talk to your loved ones. Talk about what is meaningful in your life. Talk about what you might want, what you might not want. Watch that film and think about, if I was in the ICU, would I want a breathing tube? If you have a chronic illness, at what point would you say, “I might not want to pursue aggressive care”?

It’s hard to think about this when you’re healthy. But that is the time to do it. No matter how uncomfortable talking about dying is, dying without talking about it is more uncomfortable. Think about it as a gift you give to people who have to make those decisions.

Complete Article HERE!