Belgium: Euthanasia For Children Nears Approval

Belgium: Euthanasia For Children Nears Approval

Posted on Saturday, February 15th, 2014 at 6:37 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

The Belgian Parliament has adopted a controversial bill extending the right to euthanasia to terminally ill children, the Parliament announced Thursday via Twitter.

The bill easily passed the Belgian House of Representatives 86 to 44, following a vote by the country’s Senate in December in support of the measure. The bill is expected to be signed by King Philippe, making Belgium the first country in the world to remove age limits to the practice.

“Our responsibility is to allow everybody to live, but also to die, in dignity,” said Karine Lalieux, a Socialist member of the House of Representatives, according to The Associated Press.

Under amendments to the country’s 2002 euthanasia law, a child of any age may be helped to die under strict conditions: the child must be terminally ill, close to death and suffering a great amount of pain. Counseling by doctors and a psychiatrist or psychologist is required, as is approval by parents or guardians. The child must possess the “capacity of discernment and be conscious” of requesting death.

Socialist Senator Philippe Mahoux, sponsor of the country’s 2002 “right to die” legislation, called for the law’s expansion because he said doctors have been illegally helping sick children die. Mahoux, a trained surgeon, called euthanasia “the ultimate gesture of humanity,” according to Agence France-Presse. “The scandal is illness and the death of children from disease.”

Opponents, including religious leaders and some medical professionals, argue that children are not capable of making such difficult decisions. “The law says adolescents cannot make important decisions on economic or emotional issues, but suddenly they’ve become able to decide that someone should make them die,” Brussels Archbishop Andre-Joseph Leonard said at a prayer vigil last week, according to the BBC.

On Wednesday, 160 pediatricians petitioned lawmakers to postpone the vote arguing the bill is unnecessary. “Pain can be eased nowadays; there’s been huge progress in palliative care,” Nadine Francotte, a cancer specialist in the city of Liege, told AFP.

In 2012, euthanasia accounted for 2 percent of all deaths in Belgium, up 25 percent to nearly 1,400 cases. A terminally ill person may drink a barbiturate-laden syrup, or a doctor can administer the drug through an intravenous tube to induce death.

Belgium is one of a handful of European countries where euthanasia is legal. The Netherlands legalized euthanasia in 2002, even allowing it in some cases for seriously ill minors 12 and older. Luxembourg allows euthanasia for adults; Switzerland allows doctors to help patients die in some circumstances.

Euthanasia is banned in the U.S., but physician-assisted suicide, or “Death with Dignity,” is legal in four states: Oregon, Washington, Vermont and Montana.

A Doctor’s View Of Death With Dignity

Posted on Thursday, December 12th, 2013 at 8:51 am by lifemediamatters

Hundreds of concerned citizens and patient advocates gathered at Temple Sholom in Chicago to learn about “Death with Dignity,” legislation that could allow physicians in Illinois the ability to prescribe life-ending medications to some terminally ill patients. Currently, only three states have “Death with Dignity” legislation– Oregon, Washington and Vermont; physicians in Montana may raise a defense of consent if charged with assisting in a suicide because of a 2009 trial court ruling.

Both the Oregon Death with Dignity Act (1994) and the Washington statute (2008) set safeguards to protect patients against coercion from physicians or family members. Each patient must be of sound mind when requesting the prescription for life-ending barbiturates; each patient must be informed of all other options including palliative medicine and hospice care; two doctors must confirm a diagnosis of terminal illness with no more than six months of life-expectancy; and any patient may change his or her mind at any time.

Doctors Jorge Del Castillo, NorthShore University Hospitals, Dan Fintel, Northwestern Memorial Hospital, and Daniel G. Samo, Northwestern University’s Feinberg School of Medicine, offered their perspectives about the controversial legislation.

“I think we really need to move forward and get our legislature involved in making some progress in this state, making some inroads,” Castillo said, telling a story of his 96-year-old aunt. “She was clear minded, sharp as a tack, but heart failure– she wasn’t getting around anymore, she just wasn’t enjoying life,” he said. When Castillo visited her in Miami last year, she asked him to kill her. “I said, ‘I can’t really do that. You’re still around, we’re still enjoying each other.’ But she died a week later, I think she willed herself to die. It was a heartbreaking situation to me, because I had the wherewithal to help her, but I could not.”

Samo urged the crowd to separate “Death with Dignity” laws from physician-assisted suicide. “The physician writes the prescription but does not administer the drug,” he said. “This is about a competent person who decides this is time and wants to go.”

Death W/ DignityAccording to Fintel, very few deaths in Oregon and Washington are a result of prescribed barbiturates– only about .1 to .2 percent (1 to 2 out of 1000) of recorded deaths. “This has not been an abused treatment,” he said. “This is not a wholesale reason for people to end their lives early because their medical bills were horrible, or because their families wanted to do them in.”

Samo stressed that the legislation bolsters patient autonomy. “Your religion or your beliefs say you shouldn’t do it? Great, you don’t have to,” he argued. Samo said he believes “Death with Dignity” does not reduce the sanctity of life and does not unfairly targets minority groups. He referred to Oregon as “a great social experiment.”

Other states have attempted to pass similar “Death with Dignity” laws, but they have had mixed results. In May 2013, Vermont passed the Patient Choice and Control at End of Life Act, a law based on the Oregon model. But in 2012, proponents of similar legislation in Massachusetts faced strong opposition from the Catholic Church and social conservatives, and residents narrowly voted against that measure. According to Compassion & Choices, a more than 100-year-old provision in Hawaii law does not prohibit doctors from providing aid in dying to their terminally ill patients. It is unclear when or if Illinois will approve similar right-to-die legislation.


Loretta Downs, past president of the Chicago End-of-Life Care Coalition, said she appreciated the doctors’ enthusiasm, but she felt their knowledge about palliative medicine and hospice care was limited. “Listening to three highly prominent physicians speaking publicly in favor of physician-aid-in-dying was exhilarating,” she said. “While they supported the use of advance care planning and palliative care and hospice at the end of life, each of them made comments that showed a disappointing misunderstanding of the care those services provide,” Downs added. The panel did not discuss the new Illinois POLST form, which Downs called “the most empowering legal medical directive a person facing death has today.”

Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told Life Matters Media that Illinois may be 10 years away from passing some form of “Death with Dignity” legislation. “We just had our first law passed legislatively, ever, in Vermont– it took 10 years to get that project complete. It started as a local group, much like the local group that sponsored the event in Illinois,” she said.

One of the biggest impediments for the organization’s movement in Illinois is the lack of exposure to “Death with Dignity” legislation, Sandeen added. “Oregon is way out in the West, and our experience hasn’t trickled across the U.S., yet,” she said. “It’s not like there has been a lot of discussion about ‘Death with Dignity’ in Illinois before this.”

Short Hospice Stays May Mean Lack Of Awareness, As NHPCO Launches First National Campaign

Posted on Tuesday, December 3rd, 2013 at 10:16 am by lifemediamatters

Image courtesy Tennessee Hospice Organization

Image courtesy Tennessee Hospice Organization

Despite the growing number of Americans seeking end of life care, the number of short stays in hospice is troublesome, and a sign that caregivers and the hospice industry see as a major lack of awareness about a key service for the dying.

A new report from the National Hospice and Palliative Care Organization (NHPCO) shows that more than one in three hospice patients (35.5 percent) died or were discharged within seven days of admission last year. That rate was largely the same as in 2011.

NHPCO’s analysis comes as usage of hospice, however, is on the rise. More than 1.5 million patients with a “life-limiting illness” were admitted to hospice last year, at a time of greater need- with an aging population of baby boomers eligible for the Medicare health insurance program for the elderly.

“Many physicians and hospitals don’t refer those patients until the end. Some don’t refer because it interrupts their own reimbursement or the physician’s.”

“There’s an awareness problem,” said Donald Schumacher, president and chief executive officer of National Hospice and Palliative Care Organization (NHPCO) in an interview with Life Matters Media. “People are always struggling when it is going to be the end of life.”

Hospice is generally care provided in a patient’s home, but can also be provided in a center, hospital, nursing home or other long-term care facility for people facing illness near the end of life. The number of hospice patients served has risen more than 25 percent over the last five years from 1.25 million in 2008, according to NHPCO figures published in the organization’s 2013 annual publication “Facts and Figures: Hospice Care in America”

Caregivers say the industry needs to do a better job at outreach and education to medical professionals and the public at large, particularly given the benefit is adequately funded by the Medicare health insurance program for the elderly and disabled, which offers access to hospice to potentially millions of Americans.

Schumacher said there can be many reasons for the lack of service and related knowledge about a benefit designed for patients with a prognosis of six months or less, assuming their disease follows its normal progression. Patients can remain in hospice if they live longer, pending a physician’s analysis for continued eligibility, hospice providers say.


“Many physicians and hospitals don’t refer those patients until the end,” Schumacher said. “Some don’t refer because it interrupts their own reimbursement or the physician’s.”

Though the number of patients with short lengths of service is a concern, the average length of service, or length of stay, continues to rise. In 2012, the average length of service was 71.8 days compared to 69.1 days in 2011.

“As hospice and palliative care professionals, we need to continue reaching out to patients and family caregivers to help them understand all the benefits that hospice care brings,” Schumacher said in a statement NHPCO released to accompany its report. “And as part of our ongoing engagement efforts, we must continue our efforts to reach communities that are under-utilizing hospice care.”

To improve awareness about hospice and the services it provides, NHPCO is launching a first-ever national campaign. Though NHPCO executives are not ready to disclose details, they did confirm the campaign will be a “multi-million-dollar” effort launching in January.

Certainly, hospice facilities have a financial interest in making patients and their families aware of this benefit.

But meanwhile in Washington, the sequester has already slashed Medicare and other government spending on an array of programs – including hospice – and providers don’t want to give Congress another reason to reduce spending on a service studies show is needed. This year, hospice had Medicare reimbursement of nearly $160 per day reduced to $156, a payment that covers professional staffing such as nurses, therapists and social workers.

Still, Schumacher said Congress is supportive of the hospice benefit and said it fits the push by the Affordable Care Act and government health insurance programs to keep patients in high quality, low cost settings rather than in more expensive inpatient hospital settings.

“There is Medicare funding for hospice,” Schumacher said.

“We are a huge savings,” he said of hospice care. “Hospice saves on average about $2,300 in comparison to other patients who are admitted for similar illness” to other facilities like hospitals.

The Medicare hospice benefit is the primary source of coverage for hospice care. In 2012, 83.7 percent of hospice patients were covered by Medicare, the NHPCO study showed.

Schumacher said hospice programs are becoming more integrated in newer healthcare delivery models designed to help save Medicare dollars, while at the same time improving quality such as accountable care organizations (ACOs) that have contracts with Medicare to coordinate treatment in hopes of improving outcomes while lowering the cost of medical care.

This fall in Detroit, for example, Hospice of Michigan partnered with Genesys Physician Hospital Organization’s ACO.

The ACO model differs from the predominant fee-for-service medicine in which medical providers are paid for each service for each patient in a system. Fee-for-service medicine can lead to potentially excessive treatment. When it comes to end of life care, patients are known to get a lot of care, but it is often not coordinated.

Genesys Physician Hospital Organization’s ACO was one of the original 32 so-called “pioneer ACOs” that were launched by Medicare’s administrator, the Centers for Medicare & Medicaid Services.

“By offering additional support early on to those suffering from serious illness, we are able to better manage symptoms and relieve pain,” Dottie Deremo, president and chief executive officer of Hospice of Michigan, said in a statement announcing the new partnership. “This type of care provides the patient with comfort, helps relieve stress and anxiety and extends the patient’s quality of life.”

View the full report

Keeping The Dead Among Us

Posted on Tuesday, April 23rd, 2013 at 9:08 am by Life Matters Media

One Indonesian culture could offer new perspective on the end of life in America

Image: Toraja burial site, Wikimedia Commons

Toraja burial site. Wikimedia Commons

When members of the Toraja ethnic group of eastern Indonesia tell you the dead live among them, they don’t mean that figuratively.

Corpses of loved ones often remain in households for up to two years until a traditional funeral can be held, and in the interim, family members symbolically feed and bathe the body of the deceased.

Kelli Swazey, a cultural anthropologist at Indonesia’s Gadjah Mada University and wife of an ethnic Torajan, told an audience gathered at the TEDMED 2013 conference in Washington, D.C. that a careful examination of her husband’s native culture has reshaped her views on death and could be helpful in allaying common American fears surrounding the end of life.

“Death is the most visible and remarkable aspect of the Torajan landscape,” Swazey says, describing the typical sight of one or more corpses in a Torajan home.

Funerals in this culture are elaborate, often stretching days or weeks. Because they are so expensive to carry out, the average family may need months or years to save the funds needed for such a ritual. In the time prior to funerals, bodies are placed in special rooms of a family’s household, symbolic of that family’s identity.

Swazey says this period of Torajan transition serves as a gentle way to come to terms with loss and to properly grieve.

“They socially recognize and culturally express what many of us feel to be true,” Swazey argues. “Our relationships with certain humans and their impact on our social reality does not cease with death.”

Image: Toraja burial site, Wikimedia Commons

Toraja burial site. Wikimedia Commons

As Americans see death as an unquestionable reality, Torajans view it as a part of a larger social genesis.  Dying is a process for the entire Torajan community, Swazey says, not solely a biological definition. Examining death this way removes some discomfort towards the physical realities of dying.

Because the bodies of the dead are revered and attended to for such lengthy periods, death is not only honored, but normalized in the Torajan culture, she says. Prolonging life in the face of debilitating illness is unheard of in this culture. Torajans view human life as having a pre-set length of thread that should be allowed to unspool to its natural end.

When illness strikes in our own western culture, Swayze says “we decide whether to stretch that thread of life based on emotional ties between us.”

As global citizens, she says we can’t afford to devalue knowledge because it emerges from a place so foreign and one that most Americans don’t understand. A cultural shift in perspective could be what is needed to transform end of life care and the frequent use of heroic, costly and often futile treatments for the dying.

“If we entertain and value other knowledge about life, including views on death, it can change the way we die, but more importantly, it could transform the way we live.”

The Future Of Caregiving Could Be A Talking Dog

Posted on Sunday, April 21st, 2013 at 12:39 pm by Life Matters Media

Pet avatars offered as a solution to caregiver crisis at TEDMED 

The thought of virtual pets evoke 1990s toy memories for millennials, but a new incarnation of such may help stave off dementia in their grandparents- and provide them  enriching social connections.

GeriJoy companions, virtual “talking dogs,” are now providing pet therapy, personal companionship and computer services to the elderly, and peace of mind to their long-distance loved ones.

“We’ve transformed what it is like to be a caregiver,” said GeriJoy CEO Victor Wang, as he presented his tablet-based software at the TEDMED 2013 conference in Washington, D.C.

Wang says he was inspired to create the real-time avatars as a result of his family’s experience emigrating from Taiwan- and his grandmother’s subsequent deep depression as she remained behind, alone in their home country. His parents could not afford to employ the services of a caregiver, so they lived in fear that his grandmother would harm herself, while they were rendered helpless.

“We can help increase seniors’ self-worth and improve their mental health,” Wang says, noting that more than 800,000 Americans suffering from Alzheimer’s disease live alone, and that more than half of those lack a caregiver. These numbers are expected to exponentially increase in the next two decades, and the current four-to-one ratio of able-bodied caregivers per senior is expected to drop to one-to-one.

“There are not enough real people in the U.S.,” says Wang, and he sees his GeriJoy companions as a solution to not only providing seniors with emotional interaction, but capable of updating scattered family members with the condition and overall well-being of their loved one.

Each avatar is monitored 24 hours a day by GeriJoy staff who are available to engage each virtual pet in dialogue with its senior. Relatives can use the company’s website to upload photos and updates for seniors to view and talk about with their companion. GeriJoy staff log the content of each interaction online, so that family can see how their loved one is faring.

Wang predicts that his software will soon be helpful in detecting senior abuse and accidents, as well as have the capacity to provide daily medication and activity reminders.

Wang says GeriJoy is changing the traditional definition of caregiver. “It’s about the joy, conversations, friendships and health that comes from all of this and the relationships that we build.”

To learn more: