12/31/16

Give the gift that keeps on giving: straight talk on end-of-life care

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By James Hoefler

‘Tis the season for gift giving and the odds are good that you received one you didn’t really want, like the proverbial gaudy tie, the useless kitchen contraption, or the itchy misshapen sweater. It’s the thought that counts, right?

When getting what you want — the right medical care at the end of your life — really matters, getting what you don’t want is the rule rather than the exception. I have studied end-of-life care for more than 25 years. Here are a few key points I’ve learned from my research and from extensive interviews with caregivers of all backgrounds and experiences:

  • The vast majority of Americans say they would prefer to die at home, surrounded by loved ones. But most of us die alone in a medical institution of some kind, fading away in a technological cocoon that could not be further from the setting most of us would prefer.
  • Most of us would like to face as little pain as possible at the end of our lives. Yet more than half of us suffer with moderate to severe pain and other completely controllable symptoms in our dying days.
  • Individuals who have experienced hospice care give it glowing reviews. Unfortunately, only about half of Americans are referred to hospice as death draws near, and many of those who enter hospice do so during the last few days of life, too late to take full advantage of all that it has to offer.
  • For those who are left behind, regrets and second-guessing all too often cloud the roles they played and the decisions they helped make about managing a loved one’s final days.

During this season of giving, what better gift could you give those you care for — and those who will care for you — than the peace of mind that comes with knowing the kind of care you and they want at the end of life? You don’t need a lawyer or a formal document to express these wishes: a simple conversation is actually best. In addition to giving peace of mind to those you love, such a conversation can substantially increase the chances you will get what you want at the end of life, all without spending a dime.

How can you remember to do this? Use as reminders any gifts you got this holiday season that you didn’t really want. Keep in mind that such gifts were given with the best of intentions. Well-intentioned but misguided choices about end-of-life care may be in your future unless you spend some time having heart-to-heart conversations with those you love about what is important to you when that time comes.

It’s important to have the same conversation with your doctor. Most doctors are no more comfortable talking about end-of-life care than you are, and all too often avoid the subject. So do them the favor of starting the conversation yourself — they will generally be relieved and more than willing to help walk you through the options.

Letting your loved ones know exactly what you want for that last big holiday and giving your doctor permission to talk about end-of-life options could end up being the best gift you ever give — and get.

Complete Article HERE!

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12/30/16

How funeral traditions differ across Abrahamic religions

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Funeral practices are deeply integrated in culture, reflecting beliefs and values around death. Offering an index of religion, funeral traditions in Abrahamic religions bear quite different stages as well as certain similarities

 

An Islamic funeral in Pakistan

By AYŞE BETÜL KAYAHAN

Having become a subject of philosophy, psychology, sociology as much as it has of anthropology and theology, mortality has always been a matter of interest throughout history as well in the present day. There is even a scientific field named “thanatology,” the science of death.

The anthropology of death brings us the very different funerary customs that have been in practice throughout history.

To start with a common example, ancient Egyptians used to embalm the deceased and built giant pyramids to house the embalmed bodies of their kings and pharaohs. Other interesting burial traditions include those of the ancient Greeks, recorded in anthropological records or literary works like those in Homer’s “Iliad” and “Odyssey.”

As far as can be understood from historical accounts telling about the funeral of Attila the Hun, ancient Turks used to show their grief by hurting themselves. Before the 6th century, Turks were burning the deceased with their belongings and horses, and keeping the ashes to bury in autumn or spring. Certain Chinese and Arabic accounts report that it was the Kirghiz people who were the first Turks to burn the body. However, it was after this century that Turks began to bury their deceased.

In Iran, dead bodies used to be buried before the arrival of Mazdaism (Zoroastrianism). Fire, soil, air and the water are considered as sacred in Mazdaism and the body must not pollute any of these four elements. There was no burning or burying but the deceased used to be abandoned outside. The same tradition was visible among the Sasanians, as they used to abandon the dead outside and bury the separated bones and flesh in a special containers called “Ossuarium” later on. Today modern Mazdaists bury their deceased. “Burial customs always have been an index of religion,” American scholar Richard Nelson Frye says.

According to Abrahamic religions, Islam, Judaism and Christianity, the appropriate way is to bury the deceased. It is believed that Cain (Qabil), the eldest son of Adam killed his brother Abel (Habil) and committed the first crime of murder. It was the first death on the earth and the first burial. It is still observed that Muslim and Jewish communities bury deceased people as a funerary custom following the order of the Quran and Torah. Cremation and embalming are strictly forbidden by Islam and Judaism. In both religions, burials take place as quickly as possible to honor the dead. Jews never hold a funeral on “Shabbat,” while there is no similar restriction in Islam.

Muslims and Jews prepare the body for burial by washing the body with warm water from head to feet. Jews call this process “Tahara.” Muslims apply “ghusl,” or the ritual of ablution. While washing, the body can be turned from one side to another to entirely clean it but it is never placed face down. In Islam and Judaism, the body is dressed in white burial shrouds and put in a simple wooden casket. Men prepare men and women prepare women.

In Islam, a person who is about to die is expected to say the “Shahada,” or the testimony of faith, which translates to, “There is no God but Allah and Muhammad is the Messenger of Allah.” His family or close friends should encourage him to say it because it is regarded as one of the first pillars of Islam.

When the person dies, those present close the deceased’s eyes and cover the body with a clean sheet. Someone is expected to read the Quran. As soon as the “ghusl” and shrouding are done, the deceased’s coffin is taken to the mosque for the funeral prayer “Salat al-Janazah,” which is a communal duty among Muslims.

The deceased person is put in front of the imam and the community behind him faces to the “qibla,” the direction of Mecca, in the courtyard of the mosque. When the prayer ends, the casket should be transported to the cemetery for burial. The body should be placed in the grave on its right side, facing the qibla. A layer of wood is placed over the corpse and then the soil is filled. Following the burial service, the family of the deceased accepts visitors at home.

On the other hand, Jewish funerals take place at synagogues. A Jew who is a Cohen, a descendant of the priestly class, does not join the burial unless the deceased is a close relative since he is forbidden to come near the corpse. A Cohen is commanded to be in state of purity and avoid ritual defilement by a corpse which is ritually unclean.

Women wear conservative apparel and men wear jackets in dark color. The service is held by the rabbi and begins by cutting a black ribbon to symbolize the person’s leaving loved ones.

After the funeral service, people go to the cemetery where men carry the casket. With prayers, the deceased is put in the grave with the casket. Mourners tear their garments as an expression of grief, which is called “keriah.” They keep on doing it during the first mourning process called “shiva” which lasts seven days. In “shiva” mourners keep the traditions such as covering mirrors and lighting candles. People visit the home of bereaved. There the “kaddish” prayer is recited.

Once a Catholic dies, the priest visits the home with a cross and a vessel of holy water to sprinkle over the deceased’s body. There is no washing or bathing but embalming is acceptable. It is also an appropriate way for the viewing and wake and vigil, which is a period of spending time with deceased before the funeral service at home or a funeral home. Relatives and friends of the deceased come, praying and sharing the grief of the immediate family. This is the most appropriate time to eulogize as the “Requiem Mass” (Catholic Church service) does not permit eulogies.

During the wake, the body is put on display in a casket. When the casket is brought to the church, the priest leads the funeral mass. Holy water is sprinkled and there is an opening song and prayer, and a sermon takes place from the Bible and a psalm. When the mass is completed the coffin is taken to the graveyard for the rite of committal.

For Eastern Orthodox Christians, there are differences in the funeral service compared to Catholics. When an Orthodox is about to die, the priest should be there to hear the final confession and administer the “Holy Communion” to the person. The first step is preparing the body that includes washing and clothing. When the body is bathed and dressed, the priest sprinkles the holy water on the four sides of the casket before the body is placed inside. The priest reads the first “Panikhida” (a prayer service). The wake lasts three days and during this, the “Psalter” (The book of Psalms) is read out loud by family and friends.

After this, the body is brought to a church in a form of procession led by the cross. There the coffin is opened and a bowl of “Koliva” (a dish of boiled wheat with honey) is placed with a candle on top, symbolizing the cyclical nature of life and the sweetness of heaven. A cross is placed in the deceased’s hand. Lit candles are distributed to those present in the funeral. The priest leads the “Divine Liturgy,” and recites “Memory Eternal.” Although saying goodbye differs in every society, from the preparation of the deceased to the disposal, the arrangements and funeral services in between actually show us all these funerary customs are important as much as for the bereaved of the deceased. The importance given to funerals is universal for honoring the deceased and consoling and sharing the pain of loss as well at the end of the day.

Complete Article HERE!

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12/29/16

Looking Death in the Face

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Mummy of Ramses II

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Ramses II, also known as Ramses the Great, was born about 3,000 years ago and is widely regarded as the most powerful pharaoh of the Egyptian Empire. The Greeks called him Ozymandias. When he died in 1213 B.C.E., he left a series of temples and palaces that stretched from Syria to Lybia, and countless statues and monuments commemorating his impressive reign. By the 19th century, when European colonization reached Egypt, most of these statues were gone, and the ones that remained were in ruin. In 1816, the Italian archaeologist Giovanni Belzoni discovered a bust of Ramses and acquired it for the British Museum. This is when Ozymandias’s life, in one respect, truly began.

“Ozymandias,” perhaps the most famous sonnet Percy Byshe Shelley ever penned, was written in 1817, as the remains of the famous statue were slowly transported from the Middle East to England. Shelley imagines a traveler recounting a journey in a distant desert. Like Belzoni, Shelley’s character discovers a great bust, half-buried in the windswept sands. Next to the wreckage is a pedestal where the monument once stood. Inscribed in shallow letters on the slab of rock: “My name is Ozymandias, king of kings: Look on my works, ye Mighty, and despair!” Of course, as Shelley’s poem tells us, nothing remained of these works or the king of kings. Just sand.

The poem’s message is perennial: All of this will be over soon, faster than you think. Fame has a shadow — inevitable decline. The year 2016 has delivered a string of deaths that serve as bracing reminders of this inevitability: Prince, Nancy Reagan, David Bowie, Elie Wiesel, Bill Cunningham, Muhammad Ali, Gordie Howe, Merle Haggard, Patty Duke, John Glenn. Of course, it has also been a year that has ushered in a new empire and, simultaneously, the specter of apocalypse. The year’s end is a time to take account of kingdoms built, but also the sheer rapidity of their destruction. It is a chance to come to terms with the existential fragility that is overlooked in most of our waking hours and that must be faced even by the greatest among us.

We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.

Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.

Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.

When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.

If we understand it correctly, the difficulty is this — that from the time we’re conscious adults, maybe even before that, we get to choose how we’re going to die. It is not that we get to choose whether we contract cancer or get hit by a bus (although certain choices make these eventualities more or less likely) but that, if we are relatively fortunate (meaning, if we do not have our freedom revoked by circumstance or a malevolent force we can’t control), we have a remarkable degree of choice about what to do, think and become in the meantime, about how we go about living, which means we have a remarkable degree of choice over how we go about our dying. The choice, like the end itself, is ultimately ours and ours alone. This is what Heidegger meant when he wrote that death is our “own-most possibility”: Like our freedom, death is ours and ours alone.

Thinking about all of our heroes and friends and loved ones who have died, we may try to genuinely understand that death is coming, and to be afraid. “A free man thinks of death least of all things,” Spinoza famously wrote, “and his wisdom is a meditation not of death but of life.” But we don’t even begin to think about life, not really, until we confront the fact that we are doing everything we can not to think about death. And perhaps we’re not so much afraid of dying, in the end, as of not living and dying well.

Everyday life has no shortage of things with which to waste our time: the pursuit of money, intelligence, beauty, power, fame. We all feel their draw. But the uncomfortable, claustrophobic truth is that dying for something like money or power tends not to be a choice at all. David Foster Wallace argued that for most of us dying in the pursuit of wealth or prestige is simply our “default setting.” The problem isn’t that we’re picking the wrong things to die for, but that we aren’t actually picking. We chose to live by proxy. We allow ourselves to remain in a psychological trap that prevents us from seeing what might be genuinely meaningful in our own lives. In doing so, we risk, according to Wallace, “going through (our) comfortable, prosperous, respectable adult life dead, unconscious, a slave to our heads and to (our) natural default setting of being uniquely, completely, imperially alone day in and day out.” We might call this the Ozymandias Trap — Look on my works, ye Mighty, and despair! — and be on guard against falling into it ourselves.

Most days we discover that we’re not quite up to the heroic task of extricating ourselves from the Ozymandias Trap. Others, we fear we’ve failed miserably. It is not realistic to love in the awareness that each day might be your last. But at least we can stop pretending that we will endure forever.

In Tolstoy’s famous story “The Death of Ivan Ilyich”, the dying hero reluctantly accepts his own mortality, albeit only once he can no longer avoid the truth:

It’s not a question of appendix or kidney, but of life and … death. Yes, life was there and now it is going, going and I cannot stop it. Yes. Why deceive myself? Isn’t it obvious to everyone but me that I’m dying … it may happen this moment. There was light and now there is darkness … When I am not, what will there be? There will be nothing …

Ivan Ilyich can’t pretend that he’s not dying. He recognizes what Ramses II apparently did not: With his death, there is no justification of his life, there is no proof of himself to leave behind, there are no monuments where he is going. He has lied to himself all of his life about the fact that he’s going to die.

In the end, Ivan is liberated from his self-deception. And we, too, can free ourselves from this delusion. As soon as today. Right now.

If we succeed, we may find that confronting the fact of our own impermanence can do something unexpected and remarkable — transform the very nature of how we live.

Complete Article HERE!

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12/28/16

Deaf and dying: How a volunteer team brings palliative care comfort through communication

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The first experience Monica Elaine Campbell had with palliative care was helping a woman who had lost her ability to speak because of throat cancer.

 

Monica Elaine Campbell

By Blair Crawford

Campbell, profoundly deaf since birth, is an excellent lip reader and staff at an Ottawa hospital asked if she could interpret the dying woman’s words. The woman had been communicating with paper and pen, but now was too weak even to do that.

“I was very hesitant. Then I thought, well, the least I could do is give it a try,” said Campbell, who is able to speak despite never having heard a word herself. “I put my hand on her right arm and said, ‘I’ve never done this before. I will try my best.”

Campbell leaned close as the woman mouthed her words. Campbell repeated it back and had the woman nod yes if she had understood correctly. She spent five hours with the woman, relaying messages between her and her family and the medical team. She was able to interpret about 85 per cent of what the woman told her.

“I came away a different person,” Campbell said. “I was very touched by the experience.”

The dying woman had not been deaf, but the experience got Campbell thinking about the communication needs of people like herself: the deaf and hard of hearing. A few years later, Campbell was asked to help a deaf friend who was about to receive bad news about her cancer diagnosis.

“I didn’t know much about palliative care, but she was struggling with her terminal illness,” Campbell said. “I thought, my goodness, what if that was me? I thought, I should talk to my deaf friends about death and dying and what our experiences have been.”

Those conversations led Campbell and her friend, sign language interpreter Christine Wilson, to start up the Ottawa Deaf Palliative Care Team, a group of volunteers that provide end-of-life care for the deaf and hard of hearing and their families. In 1999, she enrolled in palliative care courses at Algonquin College with two Deaf colleagues (the Deaf use a capital D to refer to the sub-culture of people who communicate with sign language; “hard of hearing” are those who have lost some or most of the hearing but can still use some speech, sometimes augmented with sign language; the “deafened” or “oral deaf” have lost some or all of their hearing, but either learned to speak before their deafness or, like Campbell, learned to speak despite it.)

Christine Wilson, left, is a sign language interpreter. She and Monica Elaine Campbell, who is completely deaf, founded the Ottawa Deaf Palliative Care Team in 2009.

The group then received additional training from Hospice Care Ottawa. It took five years to get up and running, but since 2009, the Deaf Palliative Care Team has helped inform and console the deaf and hard of hearing, breaking through their sense of isolation at the most frightening, most challenging time of their lives.

Last winter, Campbell was honoured with the Order of Ontario for her work advocating for the deaf in palliative care as well as the June Callwood Outstanding Achievement Award for Volunteerism.

“It’s a pretty scary thing to be in the health-care system,” said Lisa Sullivan, executive director of Hospice Care Ottawa. “You can imagine what it’s like for people who are deaf and to be at the end of life or actively dying and not have a way to communicate.”

Team members have also volunteered to work with the hospice to mentor new deaf volunteers. And they’ve been there, too, when some of their own members have been in palliative care.

The rights of the deaf are protected by the Ontarians with Disabilities Act, while federally, the rights of the deaf  were recognized in a 1997 Supreme Court of Canada decision. Working toward the passage of a Canadians with Disabilities Act was the first item last fall on Prime Minister Justin Trudeau’s mandate letter to the Minister of Sport and Persons with Disabilities, Carla Qualtrough.

It’s a long way from how the deaf used to be treated. Wilson learned to sign because she was the hearing daughter of two profoundly deaf parents. She was just a young teenager when her father died of a brain tumour in 1964.

“For the four months he was ill, I bet he never fully knew what was wrong with him, what was happening or that he was going to die,” said Wilson, a former nurse who now works as a sign language interpreter.

“There were no such thing as interpreters, back then. The night my dad died, they never even called my mother to go and spend that last time with him. It was his brother, my uncle, who was with him and he was the one who called the house and said to us, as kids, ‘Tell your mother that your father has died.’

Even when Campbell’s own father died of cancer in 1993 in a Prince Edward Island hospital, she found herself struggling to understand what was going on and feeling excluded from the discussions.

“The doctor had a meeting with the family, but I wasn’t able to follow what they were saying. I felt very isolated,” she said. “I was very bothered that there wasn’t a system at the hospital to sit down with us as a family.”

The Ottawa Deaf Palliative Care Team sometimes has to get creative in its service. One woman they helped was deaf and had almost no vision. She was able to communicate in a form of sign language tapped on her skin, but the team had to devise a way to identify themselves. Campbell let the woman feel the heart-shaped pendant she wears. One doctor had the woman touch her long braids and stethoscope. Another let her feel his distinctive watch with its wide wrist band. It was the only way for the woman to know who she was communicating with.

“Our modus operandi is that you don’t get ready to serve the deaf when they show up,” Wilson said. “You have to be ready. At first, (the hospice) was very resistant to have Elaine or other members of our team be there as volunteers. But the more they worked with us, the more they could see that it just made sense. Yes, maybe it wasn’t going to be as clear communication … but it’s all rubbed off on the staff. They know when a deaf person comes, we will become a team so that one of us is there all the time.”

There’s a certain pride in being Deaf, but for Campbell that pride took a long time to come. A native of PEI, she was 15 months old before doctors knew for certain she could not hear. Her parents were determined that she would learn to speak, patiently drilling her for hours on how to form words. She attended a school for the deaf and grew close to her classmates, who were like another family to her, but didn’t learn to sign until she was an adult.

“It made me change my perspective. Growing up I felt like a broken person who didn’t quite fit in,” she said. “Then it just hit me one day – I’m a human being who happens to be deaf. I was 38 before I came to be at peace with myself and who I am.”

Complete Article HERE!

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12/27/16

A Dying Man’s Wish To Donate His Organs Gets Complicated

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By Karen Shakerdge

Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.

At 44 years old, Dave Adox was facing the end of his two-year battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.

He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.

“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.

“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.

Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, where Adox often had been treated, and have

Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.

his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.

In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”

But their plan suddenly changed when University Hospital’s attorneys intervened.

“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”

Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted suicide or euthanasia — the key being that the patient is already in the hospital.

But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.

Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician, and understood and approved of his patient’s plan to end his life and share his organs.

“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach says. “But he wanted his organs to be used to save other people’s lives!”

Other physicians at the hospital supported Adox’s plan, too.

“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”

Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.

University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.

“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”

Adox had an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”

Having an advance directive on file is especially important for ALS patients, Bach says, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach says. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”

In this particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.

“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.

Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.

Mezrich acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.

“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what,” Mezrich says. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”

Still, planning one’s death to allow for organ donation raises some thorny questions, says Arthur Caplan, director of the division of medical ethics at New York University and author of Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.

Adox and Michaeli with their son, Orion, in the winter of 2015.

Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.

“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explains.

This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”

“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan says.

But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.

Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.

There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.

About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.

“Obviously we’re all sensitive to any perception of assisted expedition of death,” says Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.

In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.

“There was a hospital partner,” Friedman says, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.”

Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.

“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation they disconnected his breathing machine.”

And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”

Complete Article HERE!

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12/26/16

After a 73-year union, two hospital beds pushed together offer the best comfort

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Retired Army Col. George Morris, 94, is receiving end-of-life care at Fort Belvoir Community Hospital (Virginia), where his wife, Eloise, 91, is a “compassionate admission,” lying beside him.

By Tara Bahrampour

For 73 years – through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll – they shared a bed.

He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.

So now, as he lies in a hospital bed unable to say or do much, she lies beside him.

Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a fold-out couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.

So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too – a “compassionate admission,” their doctor calls it. Standard rooms are normally private, but Eloise’s hospital bed was rolled in and pushed up against George’s – a final marriage berth for a husband and wife who met as teenagers in rural Kentucky in the late 1930s.

He spotted her first.

“I was a sophomore in high school, and I’d gone to see a play in a country school,” said Eloise, sitting up in her reclining bed, a birdlike woman in oversize bifocals whose hair is hardly touched by gray. George rested in his bed beside her. “He saw me and went home and told his mother, ‘I just met the girl I’m going to marry.’ He said, ‘I looked her over real well and I couldn’t find anything wrong with her but one crooked tooth.’ ”

A movie date and a picnic followed. Eloise can’t recall the movie – she was too distracted by the thrill of holding his hand in the dark.

The picnic, however, was unforgettable.

“Here comes George and he had something in his hand with a crank on the end and I wondered what this was.” It was something she’d never seen before – a portable phonograph, and when he turned the crank it started playing “Sweet Eloise,” a popular song at the time. He turned that crank all afternoon. “Oh, I thought that was great.”

The town of Russell Springs, Ky., where she lived on a farm, was eight miles from Columbia, where he lived. He didn’t have a car, so he’d walk the distance to see her. By 15 she was wearing an engagement ring and had no doubts about what she was doing.

“He had thick eyebrows and devilish eyes, and I hadn’t seen any guys my way that good-looking,” she said. “I thought that he was more intelligent than any man I’d ever met.”

They married and had two sons and a German shepherd who played outfield in family softball games. After stints in Tokyo and Alaska, they eventually settled in Annandale, Virginia.

Eloise Morris, married 73 years, wears a ring she chose after she lost her original wedding ring. (It was found many years later.)

Those legendary eyebrows are wispy now, the devilish eyes half-closed as he lies beside a tray of juice and apple sauce. But every now and then as she spoke he chimed in, his voice rising alongside hers like an echo.

“We had some lean times but some great times,” she said. “We didn’t have a lot of material things, but we could sure have a sweet time. There was lots of love around. George could always make me feel so protected.”

It was a stark contrast from her youth – her father left her mother before she was born, and she grew up an only child, helping her mother and grandparents tend to the sheep and cows and chickens.

As partners, the two complemented each other. “He was strong-willed. I don’t mean bossy-bossy. But his father would say, ‘Eloise knows how to make George think he’s boss.’ Some people might call that tricky, but I know how to keep people happy. I know how to keep George thinking that he’s making the decisions.”

Being married to an airman had its challenges. He took her up once in a P-51 Mustang fighter plane and it nearly killed her. “I couldn’t hear and I was very sick to my stomach. When he did the roll, that was fine, but when he did the loop, well, I kind of blacked out and my mouth opened and I just couldn’t stand it.”

George had a lot of friends who didn’t come back from the wars. During Vietnam, “he said one of the saddest things was when he brought the dead soldiers home – he said that was heartbreaking because they were so young.” He retired in the 1970s.

The secret to seven decades of love? “Be happy, whether you’re happy or not. Laugh.” Like they did the time they were posted somewhere new and they arrived before their belongings – including their sheets and pillows.

“We cut up the newspaper and put our heads on one duffle bag, and every time we moved, the paper in it would rattle and we laughed all night,” she said, grinning. “We really, really loved each other. We were lonely, lonely when we were apart, and when he’d come home, it was just heaven.”

Their sons have since died – the older one three or four years ago, the younger one several months ago – and most of their grandchildren, great-grandchildren, and a great-great-grandson live in other towns. Although they visit sometimes, it is mostly just the two of them.

Admitting Eloise so she could be with George was not a hard decision, said the couple’s doctor, U.S. Army Maj. Seth Dukes. “We take care of the people who’ve taken care of our country,” he said. “And we extend that to their loved ones.”

At this point, Dukes said, George is dealing with a combination of medical issues, and the goal is to keep him comfortable.

For Eloise, it’s hard to see him unable to talk or eat much. “The expression on his face has changed; his eyes just look fixed,” she said. “It’s heartbreaking to see somebody lose everything, especially the days that he doesn’t know me.”

But her presence seems to comfort him. “He talks in his sleep, and when he starts I just put my hand on his and he stops.” And during the day, she talks to him. “Even though I don’t know if he can hear me, I always thank him for looking after me so well.”

An aide peeked in. Eloise seemed tired. So she did what comes most naturally: She lay down beside her husband and reached for him, their hands now mottled and roped with veins, but their fingers still knowing how to intertwine.

Complete Article HERE!

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12/24/16

Grieving families find hope after Labrador adopts orphaned bulldog litter

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Pixie with her adopted bulldog puppies.

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For a couple of hours on Dec. 10, the Phelps family felt like Christmas came a little bit early at their home in Henderson, Kentucky.

Their two Labrador Retrievers, Lil and Pixie, had given birth to two healthy litters, with Lil having her puppies just about a week shy of Pixie. When Amanda Phelps discovered Pixie had given birth, she called her family with the news and they hurried over.

But in the time it took Amanda to run back into her house to shower and come back outside, Pixie’s puppies had disappeared. It was later discovered that the Phelps’ other dog had attacked and killed Pixie’s litter.

“I was devastated,” Amanda said. “But the worst part about it was seeing Pixie so devastated. She was crying and searching everywhere for her puppies and they were gone. ”

Amanda and the rest of her family did their best to care for the remaining litter, but also try and comfort the now grieving dog that couldn’t stop walking around their property, frantically searching for her puppies. She knew in time Pixie would heal and so would the rest of the family. But on that cold Saturday afternoon, Amanda wondered how a day that started with joy could end with so much sadness.

“It was something that didn’t make any sense,” Amanda said. “But I told myself, ‘Things happen, and things happen for a reason.’ I just didn’t know what that reason was.”

Over the next 24 hours, Amanda faced her fair share of grief and tears as she cared for Pixie and the other little newborn puppies.  But the Phelpses, along with another unsuspecting family, received the miracle they didn’t know they needed thanks to the help of a stranger.

Similar circumstances, different families

Little did Amanda know, over 400 miles away in a small town in northeast Ohio, another family was grieving a similar loss on the same day.

Katie and Dan Weese, along with their three sons, of North Ridgeville, Ohio were celebrating the arrival of a new litter of English Bulldog puppies from their 3-year-old bulldog, Indy. The family took Indy to their local veterinarian’s office to have the puppies delivered by C-section. Their 6-year-old son, Dylan, shot video of the birth.

“Indy was his best friend,” Katie said. “They went everywhere together. He was counting down the days until she had her puppies.”

Indy appeared to be recovering smoothly following the surgery, and was given the all-clear to go home to care for seven new puppies.

But not long after the Weeses gathered Indy’s puppies and helped them start nursing, they realized Indy had stopped breathing.

Dan started CPR, and Katie put their children in the car to rush back over to the veterinarian’s office. Dan realized before they got to their destination that Indy was dead.

“It was just so unreal,” Katie said. “It was instantaneous. One minute we were celebrating these healthy pups, the next we’re getting ready to bury our family dog.”

But the family didn’t have much time to grieve, now that they had seven hungry puppies who were motherless. Katie drove to the local pet store to buy feeding supplies while Dan stayed home to help their three sons make sense of what had just happened.

“Later that day, Dylan doubled over with what looked like a stomach ache,” Katie said. “I asked him what was wrong, all he could say was ‘I’m just so sad.’ And that was when we realized we needed to all cry and let what happened sink in. It was therapeutic. But then we knew we had to get work, because we had our work cut out for us.”

The Weese family worked around the clock to feed the puppies, but they knew this was only the beginning of a long journey. After one round of feeding was done, they had to start preparing for the next.

Later that night, Dan posted something on their Facebook page — Red, White and Bulldogs — detailing what had happened to Indy that day. Red, White and Bulldogs also has its own blog and has a large following.

“I needed to talk about what happened,” Dan said. “I needed to write about it. Writing and talking to people is what helps me grieve the most, and I wasn’t doing it to try and draw attention to the situation, but mainly to help me process the day.”

‘It felt like fate’

Meanwhile, in Horse Cave, Kentucky, Macy Grubbs was casually scrolling through his Facebook feed, seeing what his friends and family were up to. Grubbs breeds Labrador Retrievers, and the Phelpses used one of his Labradors as the sire for both Pixie and Lil — so the Phelps family was on his mind that day, knowing that Pixie had lost all of her puppies.

Grubbs, who also grew up with English Bulldogs, follows several different breeders on his feed, including Dan and Katie Weese. He stumbled across the post Dan had made about losing Indy.

He read the post about the now orphaned bulldog puppies in Ohio and asked himself, “What if?”

“I couldn’t believe it happened on the same day, it felt like fate that I had seen it,” Grubbs said. “I knew there was a grieving dog in Henderson, and these seven motherless puppies in Ohio, and if we timed it right, we could make it work.”

Grubbs thought it over, and then sent a message to Dan.

“Hey guys I am terribly sorry to hear of your loss. I want to throw an idea your way, it may or may not help. I have a lab that gave birth yesterday and she lost her pups. She is grieving and producing milk like crazy. If you’re interested it might be worth a try. If we can help let us know,” Grubbs wrote.

Both Dan and Katie read the message and were conflicted. It sounded too good to be true, but if it worked, it could be the answer both families needed this holiday season.

“I thought, ‘This is just too crazy.’ I said to Dan, ‘This family wants to give us their dog to feed our puppies. That’s kind of weird, isnt it? And I saw they were from Kentucky, and I thought that was weird too. Why would some strangers want to come to Ohio and help us?”

From Kentucky to Ohio

Dan decided to take a leap of faith and call Grubbs. After all, what else did he have to lose?

“I remember Macy answered the phone, and I immediately calmed down after hearing his gentle, Kentucky accent,” Macy laughed. “Right off the bat, he called me brother and I knew this was a man who wanted to do something out of the kindness of his heart.”

The two men made arrangements for the families to meet the next day. Grubbs and Amanda, with Pixie in tow, made the almost seven-hour drive to Ohio to see if Pixie could help the orphaned bulldogs.

After their introductions, what happened next was what all three parties described as nothing short of a Christmas miracle.

“Pixie just laid right down and started licking and cleaning those puppies like they were her own,” Amanda said. “She knew exactly what to do.”

Katie and Dan said they had no way to predict if the plan would work. Dogs can sometimes reject their own puppies, let alone adopt a litter outside of their own, Katie said.

“I think we were all just hoping and praying that this would work,” Dan said. “We had nothing to lose but everything to gain at that point.”

And gain they did. Amanda and Grubbs left Pixie with the Weese family, where she will stay for the next four to five weeks as the puppies continue to nurse and be nurtured by Pixie.

Unexpected blessings 

Pixie has settled in just fine, Katie said, and has gained some new friends of her own.

“Our boys adore her,” Katie said. “They’ll take her outside and run with her through the woods. It’s going to be hard to say goodbye when she goes back to Kentucky, but I’m predicting because of this, we’ll be getting a big dog of our own in the future.”

Amanda and the rest of her family miss Pixie, she said, and are counting down the days until she makes her trip back home to Henderson. But she knows that Pixie getting her puppies back was the best, and most unexpected, miracle she could have asked for.

“We were two families mourning in the same way, but we found a way to find some hope through what happened,” Amanda said.

Grubbs said his reasoning for reaching out to the Weese family was pure instinct, and hoped that reaching out would bring comfort to not only Pixie, but the families, too.

“One of the first things Macy said to us was what he believed, which was the part of scripture that says ‘Love thy neighbor.’ And that’s what he did, he showed us love in a way we can’t repay,’” Dan said.

The Weese family got another unexpected blessing from this journey, too. Their son Dylan was adopted, and Pixie’s adoption of their seven bulldog puppies has hit closer to home then they thought.

Dylan Weese, 6, plays with Pixie.

“People keep telling us this is such a great story, but the link connecting Dylan with this story has been one of the greatest blessings out of this,” Katie said. “He keeps asking us if we can adopt Pixie, because we adopted him. And even though he knows now that it doesn’t exactly work that way, I think he understands what a blessing adoption is, because he saw Pixie do it with these puppies.”

All three families agreed that they are looking forward to the exact same thing in the next couple of weeks.

“I really just can’t wait to see this yellow lab running around, with seven chubby bulldog puppies running after her,” Katie laughed. “I think that will bring a smile to anyone who sees it.”

Complete Article HERE!

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