Too many African Americans plan too little for death, experts say

By Hamil R. Harris


Lynne T. McGuire, president of McGuire Funeral Service Inc in D.C., said keeping up with important documents is critical to prepare for death.

Brandi Alexander was relieved when she got the news that her father’s cancer was in remission in 2003. Neither she nor her five siblings subsequently took the time  to talk with their father about his final wishes in the event he became ill or died.

But in November 2010, Alexander flew home from Denver to New Orleans for Thanksgiving and learned that her father’s cancer had returned. Less than two months later, Ferdinand Alexander was dead.

“”When my father came out of remission, he declined very quickly and none of us knew what he wanted,” Alexander said. “I had never had a conversation with him. I had all of this knowledge about end of life things but I had never talked to my own father who had a terminal disease. He was remarried and his new wife was making all of the decisions.”

Alexander’s comments came at the conclusion of a forum entitled “The Journey Home: An African American Conversation,” in which senior citizen advocates, morticians, pastors, financial planners and even an emergency room physician came together at SunTrust Bank to talk about death, dying and end-of life choices.

“My father had six kids and we didn’t agree with his wife, who had the power of attorney. And instead of honoring his life we were battling about his death,” said Alexander, regional campaign & outreach manager for Compassion & Choices, an end-of-life advocacy group that used to be known as the Hemlock Society.

While talking about death and dying is almost taboo in the African American community, Daniel Wilson, national director of Compassion & Choices said, “We have to look at the whole spectrum of what end-of-life looks like, from the point of diagnosis to what you need to look for when you are choosing a physician to should I go to hospice.”

John M. Thompson, director of the D.C. Office on Aging, said,In the District of Columbia we have 104,000 seniors and coming to an event like this is so important not only for the seniors but for their caregivers and the young to understand how to properly plan for the future.”

“Who’s going to be responsible for executing that will, if mom and dad dies?” Thompson said. “This is a chance to have a peaceful ending for mom and dad as they move on with life and live in harmony together.

Dr. Melissa Clarke, a local emergency physician, said, “I have been in too many situations where people have come in and based upon their age should have an advance health-care directive and it should be clear what should be done for them, but it’s not.”

Lynne T. McGuire, president of McGuire Funeral Service Inc. in the District, said that she wishes that she could have the opportunity to talk with families before  someone dies. “It is bigger than just funeral planning. The whole end of life spectrum: How do I want to be cared for ? Folks are starting to talk about it, but we really do need documentation.”

For example, McGuire said the funeral home buried a woman who was 102 and learned too late that her husband who died 60 years ago, was buried at Arlington National Cemetery and there was space for her. “There was a grave reserved for her but it is too late.”

Tiffany Tippins, CEO of Impactful Wealth Solutions, said, “I think the biggest thing I see in planning for death is the lack of planning: Making decisions, letting someone know when you can’t speak for yourself and when you can act for yourself,  what do you want to happen.”

The Rev. Thomas L. Bowen, assistant pastor of the Shiloh Baptist Church in the District, said in the same way couples are offered premarital counseling, pastors need to offer counseling before people leave this earth. “A lot of times we as pastors are the first responders. When death comes, people say, ‘Lord, what am I going to do,’ then they call the preacher and say, ‘what am I going to do.’”

Complete Article HERE!

Achieving a Good Death

When a patient’s death is inevitable, there are three important things a doctor can do.

Are Patients Considering Death With Dignity Getting All the Information They Need?

Last week, an Oregon cancer doctor named Kenneth Stevens told a legislative committee in Olympia about a former patient named Jeanette Hall. As he recalled it, Hall had been told she had inoperable cancer and resolved to make use of Oregon’s Death With Dignity Act. “This was very much a settled decision,” Stevens told the state Senate’s Law and Justice Committee.

It’s for the Jeanette Halls of the world, or rather of Washington state, that Stevens said he was supporting Senate Bill 5919, which would require doctors treating patients who want to avail themselves of our state’s Death With Dignity Act to inform them about possible cures and treatments. The bill, backed by critics of the original act, subsequently passed out of committee.

The bill seemed to come out of the blue, though the issue had recently garnered national attention. In November, 29-year-old Brittany Maynard ended her own life after being diagnosed with terminal brain cancer. She had actually moved to Oregon to take advantage of the country’s first death-with-dignity law and publicized her decision online—an episode that brought physician-assisted death back into the spotlight.

Maynard inspired a “massive national campaign” for death-with-dignity laws across the country, according to the website of Compassion & Choices, the national organization that supports such laws. The group says an “unprecedented 27 states,” including New York and California, are now considering legislative action. Currently only a handful of states allow physician-assisted death, including Washington, where the practice became law in 2009 after a hard-fought initiative campaign.

Yet despite that controversial campaign and the national attention, Washington’s law has quietly gone forward. The number of people using it has steadily gone up, and now surpasses those utilizing Oregon’s law. In 2013, the latest year for which information is available, 173 Washingtonians were prescribed lethal medication and 119 died after taking it, compared to 122 people who received such medication that year in Oregon and 71 who ingested it.

As in Oregon, though, such deaths in Washington represent a tiny fraction of overall mortality. And, in this state at least, there has been no hue and cry over any particular cases. But could it really be, as the bill facing our legislature now implies, that dying patients are not being told about treatments available to them?

In fact, the story of Jeanette Hall’s near-death—now circulating not only in Washington but in various states as ammunition against death-with-dignity bills—does not suggest as much. Speaking by phone from the tiny town of King City, southwest of Portland, Hall says she was told about treatment from the start. “Jeanette, the only way to beat this is through chemotherapy and radiation,” she says she was told by the doctor who first informed her that she had anal cancer that had spread to her lymph nodes.

Though only 55, she didn’t want to go through with the treatment. She explains that she kept thinking about her aunt, a onetime feisty lawyer for the federal government who underwent grueling cancer treatment and died anyway. “She was slumped over, bald. She couldn’t even talk,” Hall says, describing the last time she saw her aunt. Hall didn’t want to turn into that person.

Still, when Hall’s doctor referred her to Stevens, a cancer radiologist, she agreed. “He didn’t give up,” she says of Stevens. It’s not so much that he provided her with new information about treatment as he persuaded her, forcefully, to go through with it. “Don’t you want to see your son get married?” he asked her. “That one sentence hit home,” she recalls.

Though the treatment proved arduous, causing her to lose her hair and making eating difficult for years afterward, she says she remains grateful to Stevens for convincing her to live.

Can you legislate that kind of approach? Should you? What kinds of conversations are going on—or aren’t—around death-with-dignity laws? These are the real questions that Hall’s story raises.

Helene Starks says that Hall’s experience illustrates how complicated conversations around death and dying can be. A professor of bioethics who works for a University of Washington center devoted to palliative care, she talks about the “movies” people play in their heads related to the way they’ve seen others deal with serious illnesses in the past. These movies may date back decades—Hall’s aunt died in the ’70s—and have little bearing on what patients may go through today. “The world of cancer and treatment is changing all the time,” Starks says.

She knows something about this from personal experience. After being diagnosed with breast cancer, she says she was surprised to learn that chemotherapy would not necessarily make her throw up all the time—or, as proved to be the case, at all.

But, she says, we won’t know what people are afraid of if we don’t ask. That conversation is different than a rote “checklist” that goes through the various treatment options. It may start with questions like “Tell me about yourself? What’s important to you? Are there things in the world you feel really strongly that you want to accomplish?”

Doctors will invariably bring the conversation around to treatment, but Starks says there’s a world of difference between dryly laying out the options and saying something like “Look, lady, you should try this, really. I’m going to walk with you every step of the way. I’m not going to abandon you.” She is skeptical as to whether you can legislate this type of conversation, seeing training as a more obvious approach.

Regardless, she says, there are these open questions: “How much do we want to push people, and what do we do when we get an answer we don’t like?” She mentions a friend of hers who has leukemia. Deemed eligible for a bone-marrow transplant, she turned it down—a decision Starks says her friend’s doctor initially couldn’t understand. Her friend decided that the ongoing complications would be too onerous, and she preferred living hard as long as she could and then dying. In this case, Starks says, the doctor did ask why, and came to accept her friend’s decision.

One local institution that has a great deal of experience with conversations about mortality is the Seattle Cancer Care Alliance, which incorporates doctors from the Fred Hutchison Cancer Research Center, UW Medicine, and Seattle Children’s. Anthony Back, an Alliance oncologist who writes about the communication between patients and doctors, says a lot of people ask about the Death With Dignity Act.

“The most important thing about the conversation,” he says, is to ask “why are they thinking about it, why now?” He adds that “a lot of it is helping people think about their values.” What do they want their last days to be like? Are there things they want to wrap up?

If patients are really serious about utilizing the Death With Dignity Act, he and other doctors will refer patients to social workers at the Alliance who help patients understand their next steps. He says that many, however, just want to know there’s a way out if they need it. Even so, he says that discussion can become a doorway into broader—and in his mind more crucial—conversations about mortality.

Most people, he says, are trying to figure out how to have as natural and dignified a death as possible. In medicine right now, he says, “We don’t have a good way to have that conversation.” So many people end up in the emergency room or intensive-care unit, suffering through a lot of invasive treatment in their dying days.

Clearly some people feel strongly about taking control of their death through medication, and these people may indeed lack information—but not necessarily about possible treatment. Unlike at the Seattle Cancer Care Alliance, a number of medical facilities around the state—particularly the growing number affiliated with the Catholic Church—do not help patients utilize the Death With Dignity Act.

The law requires a patient to have two doctors fill out forms for the state Department of Health certifying that the patient is terminally ill. “It’s difficult to find providers in certain parts of Washington,” says Robb Miller, executive director of Compassion & Choices of Washington, citing southwest Washington, Bellingham, and Spokane.

He also points to something that happened at Catholic-affiliated Providence Hospice & Home Care of Snohomish County early last year. According to a complaint subsequently filed by a hospice nurse with the health department, a patient with brain cancer “made repeated requests for alternatives to end his life.” Neither his physician nor “numerous hospice clinicians” would provide any information or referrals, according to the complaint, which added that Providence nurses and social workers believed that if they discussed the Death With Dignity Act, they would be fired.

So the patient took matters into his own hands. He got into his bathtub and shot himself.

Providence spokesperson Mary Beth Walker calls the death “tragic,” but, as of press time, says she has little information about the details of the event. She says Providence “absolutely respects that patients have a right to ask” about the Death with Dignity Act. But the organization’s policy, forwarded to Seattle Weekly, says that it will not “participate in any way in assisted suicide.” And that’s likely to stand. The DOH, finding no wrongdoing, concluded that facilities are not required to provide information about the Act.

Complete Article HERE!

Life Is But A Dream – 02/25/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

Nora Zamichow: Be honest about the end of life

Many of them will go to great lengths — even subterfuge — to avoid it.

Sure, nobody likes to deliver bad news. But shouldn’t physicians have mastered that?

In a recent study of doctors whose patients were dying, only 11 percent said they personally spoke with their patients about the possibility of death.

My husband, Mark, who died at 58, had an inoperable brain tumor. Yet at no time did any doctor look him in the eye and tell him he was going to die. They did tell him, at least initially, he could probably live another five years.

Eventually, doctors spouted euphemisms that even I, a former medical reporter, couldn’t decipher. Or they hinted, saying, “Treatment isn’t going our way,” without ruling out the possibility it might go “our way.” Finally, toward the end, doctors said, “Soon consider hospice.”

Doctors say it can be hard to predict the timing of death. Or that they don’t want to squash hope in a patient and family. Or that they don’t have time for the kind of conversation that must occur when they forecast death.

When a doctor actually told me my husband was dying, I asked her to tell Mark, thinking he might have questions I would be unable to answer. She scuttled off to his hospital bedside and returned so quickly I knew no conversation had taken place. He was sleeping, she said.

Instead, I told Mark.

I learned my husband was “failing to thrive” when I was asked to attend a meeting in a conference room at the University of California, Los Angeles’ intensive care unit with five doctors. I had briefly met one doctor. I didn’t know the others. The topic of the meeting, I was informed, was the treatment plan for Mark.

Weeks earlier, Mark had been diagnosed with the tumor, which could be treated with radiation and chemotherapy. Back then, the talk was about winning more time for Mark.

At the conference room meeting, no one actually used the word “dying.” They said they could no longer help him. One doctor advised hospice. I felt like the air had been knocked out of my lungs. No one had hinted previously that my husband’s situation was so dire. Instead, we had been told about people who managed to live years with a brain tumor.

I had seen Mark’s UCLA oncologist just two days earlier. He had been optimistic, offering several treatment suggestions, cheerily informing me he was heading off on vacation and would see us on his return.

I called our family doctor.

“Your oncologist has not leveled with you,” she said.

Those are words no one should have to hear.

I understand it’s not easy to tell someone he’s dying. When I told my husband, he said:

“That was not the deal.”

He was not ready to die. Before his diagnosis, my husband had regular physicals showing he was healthy. He ran his own public relations business and delighted in his four children.

What happened, we wondered. Why didn’t we know Mark was dying until white-coated strangers sitting in a conference room told me? Was it our obstinate desire to cling to every shred of hope in spite of evidence to the contrary?

I don’t think so.

In recent decades, technology has advanced so significantly that the art of diagnosis has changed. Doctors no longer count on in-depth conversations with patients eliciting intimate details about symptoms. Instead, they consult a battery of test results and scans.

And electronic medical records have meant that doctors are often typing their notes as they talk with patients. “The technology has become incredibly complicated,” said one oncologist. “Intangible things get lost, like talking to patients.”

The crunch between technology and communication is most apparent at the end of life. It is reflected, in part, by how we train doctors. In four years of medical school, the average amount of instruction on death and dying is 17 hours.

In 2013, only three of 49 accredited schools of public health offered a course on end-of-life care. Students do not learn more about dying, one report says, because death is a medical failure.

In effect, we have created a medical system that treats death as a separate event having nothing to do with life.

In my husband’s case, we resigned ourselves to death. Unlike our doctors, we talked and talked about it. On my daughter’s first day of fifth grade, my husband entered hospice.

I began reading to Mark about death, mostly essays and poetry. We speculated about dying, what it would be like.

Initially, we thought hospice staff could give guidance. But when my husband rolled his eyes at one social worker, I realized we would tackle this as we had much else in our marriage: winging it and together.

In my husband’s final weeks of life, he wanted a hamburger and fries every day. He spoke less and less. Yet he was still the wordsmith. When I bumbled at pronouncing the word “schadenfreude” (glee at another’s misfortune), he raised one eyebrow and corrected me.

One afternoon, he ate only a bite of his burger, then asked me whether it was possible to have hamburger juice. I began breaking his pills into smaller pieces.

The next morning, I found my husband smiling at the ceiling and asked what he was smiling at. “Death,” he said. I found it oddly comforting.

Mark died three days later.

Zamichow is a Los Angeles journalist and former Los Angeles Times staff writer who wrote this for the newspaper.
Complete Article HERE!

NPR host Diane Rehm emerges as key force in the right-to-die debate

Diane Rehm and her husband John had a pact: When the time came, they would help each other die.

John’s time came last year. He could not use his hands. He could not feed himself or bathe himself or even use the toilet. Parkinson’s had ravaged his body and exhausted his desire to live.

“I am ready to die,” he told his Maryland doctor. “Will you help me?”

The doctor said no, that assisting suicide is illegal in Maryland. Diane remembers him specifically warning her, because she is so well known as an NPR talk show host, not to help. No medication. No pillow over his head. John had only one option, the doctor said: Stop eating, stop drinking.

So that’s what he did. Ten days later, he died.

For Rehm, the inability of the dying to get legal medical help to end their lives has been a recurring topic on her show. But her husband’s slow death was a devastating episode that helped compel her to enter the contentious right-to-die debate.

“I feel the way that John had to die was just totally inexcusable,” Rehm said in a long interview in her office. “It was not right.”

More than 20 years after Jack Kevorkian jolted America with his assisted-suicide machine, Rehm is becoming one of the country’s most prominent figures in the right-to-die debate. And she’s doing so just as proponents are trying to position the issue as the country’s next big social fight, comparing it to abortion and gay marriage. The move puts Rehm in an ethically tricky but influential spot with her 2.6 million devoted and politically active listeners.

Now 78 and pondering how to manage her own death, Rehm is working with Compassion & Choices, an end-of-life organization run by Barbara Coombs Lee, a key figure in Oregon’s passage of an assisted-suicide law and a previous guest on the show. Rehm will appear on the cover of the group’s magazine this month, and she is telling John’s story at a series of small fundraising dinners with wealthy donors financing the right-to-die campaign.

If asked, she said she would testify before Congress.

Rehm’s effort comes less than a year after Brittany Maynard, a 29-year-old woman suffering from terminal brain cancer, moved to Oregon to legally end her life, giving the issue a new spin. That she was young and beautiful helped proponents broaden their argument, making the case that it is a civil right, not just an issue for graying Baby Boomers.

The Maynard case prompted a surge of activity among state lawmakers pursuing so-called death-with-dignity laws, including in Maryland, New York, Florida, Kansas, Wisconsin and the District. Progressive politicians and voters say the country is ready for the conversation.

“Kevorkian was before his time,” Rehm said. “He was too early. The country wasn’t ready.”

Public opinion on the issue depends on how it is described, according toGallup, which has found strong support for doctors helping patients end their lives “by some painless means,” but a far slimmer majority in favor “assisting the patient to commit suicide.” Not surprisingly, groups such as Compassion & Choices studiously avoid using the word suicide.

Laws granting the right to die exist in only three states — Oregon, Washington and Vermont. New legislation faces staunch opposition from religious groups and the medical establishment.

In Massachusetts and other states where legislation has failed, proponents faced well organized public campaigns from the Catholic church, whose American bishops call suicide a “grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.”

Pushback from the American Medical Association has been equally fierce, with the organization saying that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Both sides of the debate see Rehm’s entry into the debate as an important development.

“She brings gravitas, she brings her experience and she brings a level of reason and sanity to this discussion that is severely lacking when you look at the opponents of death with dignity,” said Howard Ball, a University of Vermont political scientist and author of “At Liberty to Die: The Battle for Death with Dignity in America.”

Ira Byock, a palliative care physician and vehement opponent of assisted death, has argued against the movement on Rehm’s show. Though he credits her for having him on, he said her story and influence distracts from the conversation the country should be having about improving end-of-life care.

“It sucks all of the oxygen out of the room,” he said.

‘I don’t want comfort’

They met in 1958. John was a lawyer at the State Department. Diane was a secretary.

“Physically, she was a knockout,” John wrote in a book they published about their marriage. But there was more. “It became clear, for example, that Diane had a fierce intellectual curiosity.” She never went to college, but had a copy of “Brothers Karamazov” on her desk.

Diane recalled his crew cut, his physique, his own intellectual curiosity.

“We loved taking long drives into the countryside,” Diane wrote, “and then going out for pizza and wine at Luigi’s, talking about our dreams, our fantasies, our attraction to each other.”

They wed and had two children, but marriage wasn’t as easy as falling in love. John was a loner, a workaholic. Diane was more outgoing, centered on family. They disagreed about so many things, nearly breaking up.

One thing they agreed on: Death.

“We had both promised each other we would help each other when the time came,” Diane said, “if there was some incurable or inoperable disease.”

The end of John’s battle with Parkinson’s last June was that moment. They had a meeting with his doctor. Their daughter, Jennifer Rehm, a physician in the Boston area, listened on the phone. She said, “Dad, they can make you comfortable.” Her father replied: “I don’t want comfort.”

The doctor made it clear he couldn’t help, but offered the self-starvation option, which the Supreme Court has ruled legal. John, living in an assisted-living community, didn’t immediately make the decision. The next day, Diane went to visit.

“I have not had anything to eat or drink,” he told her. “I have decided to go through with this.”

“Are you really sure?” Diane asked.

“Absolutely,” she said he told her. “I don’t want this.”

Diane stayed by his bedside. A couple days later, he went to sleep, aided by medication to alleviate pain. She read to him, held his hand, and she prayed.

“I prayed and prayed and prayed to God, asking that John not be suffering in any way as his life was ebbing,” she said.

Like his wife, John was Episcopalian, a church that has passed a resolution against assisted suicide and active euthanasia. She didn’t think God minded very much.

“I believe,” she said, “there is total acceptance in heaven for John’s decision to leave behind this earthly life.”

As John edged closer to death and the end of their 54-year marriage, a priest friend came to visit. Diane got a glass of red wine for a service of Holy Communion next to her husband’s bed. She put a drop of red wine on his lips. The priest performed last rites.

She spent the night with him, and in the morning she went home for a quick shower. Then she received a call — come fast, he’s slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there.

“That’s all I keep thinking about,” she said. “Why can’t we make this more peaceful and humane?”

John donated his body to George Washington Medical School. At his memorial service, some 400 people packed St. Patrick’s Episcopal Church — journalists, academics, policy makers and religious figures, including Marianne Budde, bishop of the Washington Episcopal Diocese.

Diane returned to work not long after. She told her producers she wanted to do another show on assisted dying.

It wasn’t until the last few minutes that Rehm told listeners what her husband had done: “John took the extraordinarily courageous route of saying, ‘I will no longer drink. I will no longer eat.’ And he died in 10 days.”

Richard from Florida called in. “You have my deepest sympathies and empathies with the loss of your husband,” he said. And then: “I’ve got to get to the state that gives me the choice.”

Rehm said she knows that as a journalist, she must be careful.

“As strongly as I feel, I don’t want to use the program to proselytize my feelings,” she said. “But I do want to have more and more discussion about it because I feel it’s so important.”

Sandra Pinkard, Rehm’s producer, said she appeals to listeners, in part, because she is so open about herself. She and John discussed their marriage on the air. She detailed his struggles with Parkinson’s.

Rehm came back to the assisted death topic in late October after Brittany Maynard announced plans to end her life.

Byock joined her on the show, knowing, he said, that “on this issue, she is clearly an advocate.” Though she didn’t mention her husband, he said he had to be “very assertive” to counter the focus on Maynard’s undeniably dramatic case.

Still, he said he would go back on the program “in a heartbeat” because it’s becoming a forum for the debate.

“It’s people like her listeners that I want to talk to,” he said. “I am sincerely grateful for giving me access to her listeners.”

Her last moments

They still talk, Diane and John.

“I miss you so much,” she’ll say out loud, alone in her apartment. When President Obama awarded her the National Humanities Medal last year, she told John, “It just breaks my heart you weren’t there.”

She could hear his voice: “Don’t worry, I’m there.”

Wherever he is, Rehm has plans to join him. But she doesn’t intend to die the way he did. Shortly after John’s funeral, Rehm made an appointment with her doctor to talk about her death.

“You have to promise,” Rehm told the doctor, “that you’ll help me.”

The doctor, Rehm said, was “receptive” to the request. “I think over a period of time he or she would provide me, if I were really sick, with the necessary means,” she said.

Rehm can’t fathom being in the “position where someone has to take care of me. God forbid I should have a stroke, I want to be left at home so I can manage to end my own life somehow. That’s how strongly I believe.”

Like John, she is donating her body to GW medical school. Once students finish learning from her remains, her family will take her ashes to the family’s farm in Pennsylvania, spreading them near the same hickory tree that shades John’s ashes.

Rehm can vividly see her last moments. She is in her bed, at her home, unafraid.

“My family, my dearest friends would be with me holding my hand,” she said. “I would have them all around me. And I would go to sleep.”

Complete Article HERE!

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.

Dementia

But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.

If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.

And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.

Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.

Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.

Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.

Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.

For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.

By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.

Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.

That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.

In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.

Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”

They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.

Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)

In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.

Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.

But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?

That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.

“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.

As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar.
Complete Article HERE!

Florida and Pennsylvania Work on New Medical Marijuana Bills and Jamaica Makes History on Bob Marley’s Birthday

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The tide is turning in favor of cannabis and the electrifying results are creating new and unexpected conundrums. Welfare for cannabis? What will become of drug-sniffing dogs? Get a move on, Australia! All that and more in this week’s legalization roundup:

U.S. Updates

COLORADO

Colorado is currently considering a ban on using Electronic Benefits Cards (EBTs) at marijuana businesses. Liquor stores, casinos, and gun shops already carry such a ban, and by extending the ban to include marijuana dispensaries, this helps cannabis businesses avoid federal intervention if there is any evidence that public benefits are being used for marijuana.

A similar bill was proposed in 2014 but failed on the basis that many dispensaries are in low-income neighborhoods and dispensary ATMs may be the closest source for those without a bank. However,Washington state enacted a similar law in 2012 that blocks all businesses exclusively for adults (strip clubs, bars, and now retail cannabis shops) from letting people use EBTs to withdraw cash, a law that has been enforced through ATM codes and has thus far been mostly successful.

CONNECTICUT

Two bills, House Bill 6703 and House Bill 6473, have been proposed to the medical_marijuana1Connecticut legislature that would legalize, regulate, and tax retail cannabis in the state. The bills are lacking details on regulation and enforcement, but House Deputy Majority Leader Representative Juan Candelaria (say that five times fast, I dare ya!) said that, as a sponsor, he hopes this bill will start a new conversation about cannabis after the state previously decriminalized in 2011 and legalized medical cannabis in 2012.

This bill serves to gauge interest from the legislature and the community about legalization efforts in New England, an area that has been predicted as the next major hub for legalization efforts.

FLORIDA

Senator Jeff Brandes just filed a major medical cannabis bill that would allow seriously ill patients access to medical-grade cannabis. The bill is very similar to Amendment 2, the medical marijuana bill that shoulda-woulda-coulda been but lost by 2% of the vote during the 2014 mid-term elections.

Senator Brandes, who openly opposed the previous amendment, said he did so because he believes that the Legislature should be in charge of driving such a major change to the healthcare system in Florida. The real question now is whether Governor Rick Scott would sign it, veto it, or allow it to become law.

ILLINOIS

major-health-benefits-of-medical-marijuanaWith the new governor handing out growing and dispensary licenses, the time is ripe for change and the Illinois General Assembly just introduced two proposals, both of which would eliminate jail time for simple marijuana possession. House Bill 218 would replace any criminal charges and jail time with a $100 “Uniform Cannabis Ticket” and a petty offense, while Senate Bill 753 would legalize the possession of up to 30 grams of cannabis and the personal cultivation of up to five plants by adults 21 years of age and older.

MARYLAND

Baltimore City Delegate Curt Anderson has introduced legislation toexpand the decriminalization bill that was enacted last year. The bill reduced the penalties for possession of less than 10 grams of cannabis from one year in jail to a simple civil fine of $100. Unfortunately, the law did not change for the possession of paraphernalia, which this new law aims to alleviate, as there are still police in rural Maryland arresting people on paraphernalia charges. The new bill would help reduce overcrowding in Maryland jails, which is a fairly serious concern and was an incentive for passing the decriminalization bill in the first place.

OHIO

State Representative John Rogers introduced House Bill 33 that could legalize the use of cannabidiol for “persons who have been diagnosed with a seizure disorder.” There were eight other co-sponsors, including Representative Wes Retherford, who stated that his intention to sponsor this bill was inspired by the Benton family, whose two year-old daughter Addyson suffers from such intense seizures that the family moved from Ohio to Colorado seeking cannabidiol oil to combat her symptoms. This is a great step in the right direction but leaves thousands hanging who could potentially benefit from an expanded medical marijuana program.

OREGON

Since Oregon voters approved Measure 91 to legalize retail cannabis in the state, Oregon police agencies have begun phasing out and reassigning their drug-sniffing dogs. Springfield was one of the first agencies to begin the trend; when they finally got a drug detection dog, they made sure that the dog was trained to detect heroin, methamphetamines, and cocaine, but marijuana was eliminated from the detection list. Other dogs that have already been trained to detect cannabis will be put to use in more large-scale investigations, as cannabis in large quantities and in certain locations is still illegal.An Initiative To Legalize Marijuana In California To Appear On Nov. Ballot

Washington state patrols have already made the decision to stop training K9 units for marijuana detection, but it’s difficult and time-consuming to “untrain” a dog and carries mixed results. Furthermore, dogs can’t make a distinction between the different types of detected drugs, which makes their role in future drug investigations uncertain.

PENNSYLVANIA

Pennsylvania nearly passed Senate Bill 1182 last year, which would have legalized medical marijuana in Pennsylvania – it passed overwhelmingly in the Senate but never made it to the House for consideration. This year, the Pennsylvania legislature is making sure that the newest bill sees its day in the House. The bill, which is nearly identical to the previous bill, currently boasts 25 co-sponsors, the backing of Governor Tom Wolf, and some support from key Republicans just for good measure. Senator Daylin Leach said the bill will likely undergo some major changes before being enacted into law, but he wants to make sure that seriously ill patients have the options that they legitimately need.

SOUTH CAROLINA

Republican lawmakers will be introducing two bills that will expand the previously enacted bill that allows the use of CBD oil for seizure disorders. When the bill was passed last year, the legalization of CBD oil was immediate, but there was no way for patients to obtain it – there is no manner of production in South Carolina and it’s federally illegal to cross state lines with any extracted forms of cannabis, legally obtained or not. Senator Tom Davis and Representative Jenny Horne are teaming up to release an expanded medical marijuana bill that will broaden the qualifying conditions for medical cannabis, outline how the plant will be grown, processed, and regulated, and lay out guidelines for how it will be dispensed. Can I get an “Amen” for progress in the Deep South!

WASHINGTON

Washington has had legalized retail cannabis for more than two years, but many cities and counties have placed such restrictive moratoriums on the cannabis industry that it is incredibly difficult to get your hands on it without traveling out of the area. This, in turn, makes the black market continue to thrive in areas where access is limited – a vicious cycle if there ever was one. Washington lawmakers are hoping to break this cycle by offering tax revenue as an incentive for cities that allow retail cannabis shops to open. This is an approach they’ve modeled after Colorado, where they’ve seen some success (and let’s face it, Washington should be following Colorado’s lead – they’re doing good work down there).

International Updates

AUSTRALIA

Professor David Penington at Melbourne University, one of the top professors at a prestigious university, published a paper in the Medical Journal of Australia arguing that medical cannabis should be legalized, citing examples in the United States, Israel, Holland, and the Czech Republic for their overall success with the legalization of cannabis for medical conditions. The New South Wales government is planning clinical trials on the effectiveness of medical marijuana, but Professor Penington says that this approach is inappropriate for patients who are suffering and that doctors should have the ability to prescribe cannabis in the same manner that they would prescribe any other painkiller.

The NSW government has not begun the trials yet, as they are examining options to import cannabis or grow it under controlled government conditions. Thank you for the clarity, Professor Penington.

GUAM

A Guam attorney who had challenged the voter-approved initiative to legalize medical marijuana has agreed to drop his federal lawsuit after a judge ruled that he had no legal standing in the case. Attorney Howard Trapp and Guam Election Commission attorney Jeffrey Cook signed an agreement to dismiss the lawsuit. We are really digging this trend of judges upholding voter rights and respecting legal protection for medical marijuana patients!

IRELAND

A recent opinion poll found that while 90% of respondents say they rarely or never consume cannabis, over a third of those surveyedbelieve that cannabis should be legalized regardless. When broken down by age group, more than half of participants ages 15-24 believe cannabis should be legalized, while 36% of those age 20-49 years old share the same belief.

JAMAICA

Jamaica’s Senate passed a landmark decriminalization bill that just so happened to coincide with what would have been Bob Marley’s 70th birthday. The bill decriminalizes the use and possession of cannabis as well as legalizes cannabis for medical or religious purposes. What a lovely gift to the late, great Bob Marley!
Complete Article HERE!

Dying on your own terms: A physician’s advice for a better death

By Peter Whoriskey

In a new book, “The Conversation”, physician Angelo E. Volandes argues that the the U.S. healthcare system is failing patients in their final acts: Americans are botching death.

The problem is that hospitals and doctors are pre-programmed to “do everything” for dying patients – that is, attempt every last measure to prolong life, even if its probably futile, painful and unwanted.

To a certain kind of Washington policy wonk, the trouble with “doing everything” is that it causes soaring medical costs and billion-dollar financial woes.

But those are not the concerns of Volandes, a Harvard researcher who practices as a hospitalist. Instead, he sees the extreme end-of-life measures as a tragedy for patients – a tragedy that could be prevented if only doctors asked patients what they want. The patients are the ones who must bid farewell to life being poked and prodded and filled with tubes by strangers in the hospital.

The tone of the book, which is told through a series of patient vignettes, is polite. In a recent conversation, Volandes sounds considerably angrier about the failings of the system.

Angelo E. Volandes

Peter Whoriskey: To get patients like her to realize what “doing everything” means, you started taking patients on tours of the intensive care unit to see what dying in the hospital looks like – the tubes and so on. When that became impractical – it was against hospital rules – you even made a video.

Angelo E. Volandes: I want patients to understand what “doing everything” means. I’ve since heard from other doctors who’ve done the same thing. People just don’t know what it’s like in there. As doctors, we sometimes say to one another, “Would anyone want this? We are torturing these patients.” But patients don’t know.

I wrote the book because… I want people to be outraged. I want people to understand what’s happening behind those hospital doors. This is not a patient-centered healthcare system.

Whoriskey: You talk in the book about being, early in your career, one of those doctors who couldn’t squarely talk to patients about death, and in the case of one brain tumor patient, being unable to say directly that she had terminal cancer and was dying.

Volandes: We weren’t trained to talk to patients. I was actually sweating. I’ll never forget her look. She was a highly educated professor and she had this blank stare. It will stay with me the rest of my life.

Whoriskey: One of the patients you talk about, as a warning, is an old coal miner who despite being very near death was saddled with “eight plastic intrusions”: a tube into his lungs, two intravenous lines, an arterial line, a stomach tube, a tube in his heart to drain fluid, one for his bladder and one for his rectum. How often do patients die like that – is it really that common when they are about to die anyway?

Volandes: He’s not unusual. If we haven’t had a conversation with a patient about what they want, it’s automatically a full court press. All of those intrusions are commonly used. None of them is extraordinary.

Whoriskey: What is most common measure applied to patients who are near death that ought to be reconsidered?

Volandes: Feeding tubes. That is probably the number one kind of avoidable care. We know from many studies on patients with advanced dementia, feeding tubes are not helpful. Yet what do we see in nursing homes? Patients tethered to feeding tubes. The alternative is hand-feeding.

Whoriskey: The solution you propose is simple: Have a conversation. Ask patients what they want. Is it really just the lack of conversation that has most of us dying in hospitals and nursing homes when we really prefer to die at home?

Volandes: That’s what I see as a practitioner. I know that when we do slow down to talk to patients, people tend to choose the care that is right for them. Most of the time today we’re not even stopping to have the conversation.

Yes, the default is to do everything because that’s what we as doctors are trained to do and that’s what hospitals are there for, and there are financial incentives behind that. But if we slow down and talk to patients, it can work.

Complete Article HERE!

The Fallacy of ‘Giving Up’

The critical role of talking with a doctor about values and priorities in life—at any age

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