The Cost of Dying

Editor: I'm sick of hearing that what's spent on patients in their dying days is far more than is spent at any other time in their lives (as in this CBS News story) -- and, by implication, is far too much. Doesn't it beg the question? Isn't it about right that more be spent when you're the most ill, when life is at its most fragile? Should we be expecting some sort of parity: We'll only spend in our last days an amount equal to or less than what's been spent on us during our lifetime? Isn't that absurd?

This article cites Marcia Klish as an example:

Marcia Klish is either being saved by medical technology or being prevented from dying a natural death. She is 71 years old and suffering from the complications of colon surgery and a hospital-acquired infection. She has been unconscious in the intensive care unit at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., for the better part of a week.

One of her doctors, Ira Byock, told 60 Minutes correspondent Steve Kroft it costs up to $10,000 a day to maintain someone in the intensive care unit. Some patients remain here for weeks or even months; one has been in the ICU since May. "This is the way so many Americans die. Something like 18 to 20 percent of Americans spend their last days in an ICU," Byock told Kroft. "And, you know, it's extremely expensive. It's uncomfortable. Many times they have to be sedated so that they don't reflexively pull out a tube, or sometimes their hands are restrained. This is not the way most people would want to spend their last days of life. And yet this has become almost the medical last rites for people as they die."

Dr. Byock leads a team that treats and counsels patients with advanced illnesses. He says modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily. "Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it's having someone you love die badly," Byock said.

Asked what he means by "die badly," Byock told Kroft, "Dying suffering. Dying connected to machines. I mean, denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever. And I think that's
collectively what we're doing."

But what should Marcia have done? Gone home after infection set in? Not had the surgery? If she'd known she'd end up in ICU, she probably wouldn't have chosen surgery, but who knew at the time how this would turn out? At 71, she may have felt she had a lot of time left. Maybe her parents died in their 90s and she had a reasonable expectation of long life. Should she now be denied treatment for complications?

As I said, it begs for more questions to be asked.

3- part series on Alzheimer's in January: Wyoming, MI

The Alzheimer's Association - Greater Michigan Chapter - announces a three-part series in January:

Week 1 – Monday, January 11, 2010, 2-4 PM
Understanding Alzheimer’s Disease & Other Dementias - tips for getting a diagnosis, warning signs to watch for

Week 2 – Monday, January 18, 2-4 PM
Legal and Financial Issues - tips for making financial and medical decisions on behalf of a person with dementia; planning for future care needs: understanding Medicare, Medicaid, and Veterans Benefits

Week 3 – Monday, January 25, 2-4 PM
Strategies for Navigating the Dementia Journey - tips for successfully interacting with a person with dementia, where to go for assistance

Location: Metro Health Professional Building — Conference Rooms (on the Metro Health Hospital Campus), 2122 Health Drive SW, Wyoming, MI 49519
Refreshments provided. A donation of $10 per person (or family) per session is suggested.

Please call to reserve your seat or for more information: (616) 459-4558 or 1-800-272-3900

Coping with Medical Challenges During the Holidays

If you or a loved one is dealing with the challenges of diabetes, heart disease, osteoporosis or other health condition, give yourself the gift of a lower-stress holiday season this year. The holidays are generally considered to be a joyous time; however, for people coping with serious illnesses, the holidays can bring unwanted stress. Michelle Riba, M.D., professor of psychiatry and associate chair for integrated medicine and psychiatric services at the University of Michigan Health System, recommends ways to steer clear of these unnecessary stresses during the winter months. Right at Home

New Study Shows What Americans Don't Know About Long-Term Care

Most Americans know what long-term care is and how much it costs, but their scores fall short regarding how many people will need it and how they will pay for it. The MetLife Long-Term Care IQ Survey, taken by 1,021 individuals aged 40 to 70 in 2009, reveals that most are not taking appropriate steps to protect themselves from potentially catastrophic expenses. Right at Home

Related article: Holiday Visits May Be the Time to Discuss Home Care

Patients demand changes to Liverpool Care Pathway

The Pathway was caught in a blaze of controversy in September when a group of doctors claimed it was the cause of elderly and sick patients dying prematurely. The option to withdraw food and fluids became a particular focus for public concern, leaving many elderly and terminally ill people frightened they might spend their last days starved and dehydrated. In a further disturbing twist, a national audit of the LCP revealed the same month that more than a quarter of families were not informed when their relatives were moved onto the Pathway.

The architects of the LCP are seeking to address these concerns with a revised version of the guidelines which they will launch on Wednesday. They will include the requirement that patients and their families are consulted before the LCP is commenced, and will stipulate that food, fluids and non-palliative medication should be withdrawn only if they are harmful or burdensome to a dying patient. Telegraph

How to Apply for Disability

Social Security and other types of disability coverage all have different application processes. Here’s what you need to know about how to apply for benefits. CarePages

Trapped in his own body for 23 years: the coma victim who screamed unheard

For 23 years Rom Houben saw his doctors and nurses as they visited him during their daily rounds; he listened to the conversations of his carers; he heard his mother deliver the news to him that his father had died. But he could do nothing. He was unable to communicate with his doctors or family. He could not move his head or weep, he could only listen. Doctors presumed he was in a vegetative state following a near-fatal car crash in 1983. They believed he could feel nothing and hear nothing. Then a neurologist decided to take a radical look at the state of diagnosed coma patients, released him from his torture. Using a state-of-the-art scanning system, Steven Laureys found to his amazement that his brain was functioning almost normally.

The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. "I'll never forget the day that they discovered me," he said. "It was my second birth." Experts say Laureys' findings are likely to reopen the debate over when the decision should be made to terminate the lives of those in comas who appear to be unconscious but may have almost fully-functioning brains. Guardian, Other falsely diagnosed coma cases

The Rationing Commission

Meet the unelected body that will dictate future medical decisions. Democrats are quietly attempting to impose a "global budget" on Medicare, with radical implications for U.S. medicine.
Like most of Europe, the various health bills stipulate that Congress will arbitrarily decide how much to spend on health care for seniors every year—and then invest an unelected board with extraordinary powers to dictate what is covered and how it will be paid for. Prominent health economist Alain Enthoven has likened a global budget to "bombing from 35,000 feet, where you don't see the faces of the people you kill." WSJ

6 Tips to Avoid Medication Mishaps

Don't just let your doctor write a prescription and send you on your way. Ask the right questions so you can take your medication safely and properly. Everyday Health

Understanding Advance Care Directives

You can help ensure your health care wishes are known and respected through advance care directives. These directives address how aggressively you want doctors to pursue life-sustaining measures on your behalf or whether your quality of life or comfort should be paramount concerns. Everyday Health

Pro-life resources:
Baptists for Life's Protective Medical Decisions Declaration (use it with your state's Will to Live below)
The Will to Live Project

Inside the Dignitas house

More than 1,000 people have travelled to Switzerland to end their lives. But what is it really like inside the world's first assisted suicide center? The two-story house in Pfäffikon was bought for around €1m (£880,000) – much of it raised by donations from members. Guardian

Honest Food Guide

If you want a real guide to which foods you should eat, check out the Honest Food Guide, an easy-to-use nutritional reference chart that will help you make the best choices at every meal. The "Honest Food Guide" is based on real nutrition, not politics or special interest groups, and it illustrates the nutritional principles that will keep you healthy for life.

Senate Health Care Bill is Assisted Suicide Friendly

Bioethicist Wesley J. Smith says the new Senate health care reform bill contains another problem apart form abortion funding. The new measure is friendly to assisted suicide in that it contains language supporting physicians who don't want to kill their patients but promotes the practice nonetheless. "[I]t is a conscience clause protecting medical professionals who don't commit assisted suicide. There is no prohibition on promoting it or having it paid for under the plan. . . . If assisted suicide, or even euthanasia, are legally considered forms of 'end of life' care in a particular state–as it is now in Oregon, Washington, and Montana–it seems to me that the area’s community health insurance option would be required to provide access to it under this clause. How else can the provision be read?" LifeNews

Police Raid Offices of Assisted Suicide Organization

Police raided the Melbourne offices of Exit International last Thursday, seizing documents related to the alleged assisted suicide of Exit International member Frank Ward. In response, Exit International has told its 4,000 members to be wary not to attract police activity. The raid highlights the dubious legal status of Exit International's activities. According to Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, said, "I think that this raid is long-overdue. [Dr. Philip] Nitschke [head of Exit International] has been skirting the law for many years." LifeSiteNews

Legal restrictions on “suicide tourism” and organ trafficking

Two areas that give medical tourism a bad name, and most medical tourism hospitals and clinics avoid, are suicide tourism and organ transplant trafficking. Authorities want to end both. International Medical Travel Journal

Illegal organ trade rife in China

Organ trafficking in China is more active than ever despite efforts to crack down on the trade, with kidneys being openly bought and sold online in a dozen cities across the country. The Chinese Government has tried to limit organ trafficking by launching a national organ donation system earlier this year. But the program is failing to attract donors, with China boasting one of the lowest organ donation rates in the world, and instead people are turning to organ trading websites. One Chinese kidney trading website is packed with organ brokers' advertisements where contact numbers are openly on display. The ads ask potential sellers to contact them, promising a safe surgery and a quick cash payment. ABC News (Australia)

Hospital Guilty of "Unreasonable Obstinacy" in Saving Newborn's Life

A hospital in the south of France has been found guilty of taking excessive measures when they successfully revived a newborn baby that had been declared stillborn. The baby's heartbeat had dropped during delivery, and the baby seemed to be dead upon birth. After twenty-five minutes of attempted resuscitation, the gynecologist informed the parents that the baby was dead, but staff continued their efforts and the heartbeat returned. The baby has since suffered severe mental and physical disabilities due to the trauma.

The parents' lawyer was pleased with the decision, which he says is unprecedented in France. "For the first time, a tribunal recognizes that a life without consciousness is not a life," he said. He accused the hospital of having "forced to revive a child." According to Alex Schadenberg of the Euthanasia Prevention Coalition, the decision could have far-reaching consequences for children born with various anomalies. If the decision is taken seriously, he said, "it will once again dehumanize people born with disabilities, to the point where their lives will be considered incompatible with life. The judge should have said that while the ethics of [the extraordinary measures] might be questionable, now that that child is alive, we cannot question this. If someone is alive, it should simply be deemed that their life is worthy of life, and we should not be judging that life as having value or somehow being a life that should not have happened. Being alive should be enough."

Baby RB: when is it right to allow a child to die?

A loving father last week abandoned a court battle to save his disabled child’s life. Why did he change his mind and what wider ethical questions has this tragic case raised? Telegraph

Editor: A thoughtful article. Was this euthanasia? It seems to me this was a case of the underlying condition being the cause of death, and not the act of removing life support. Agree? Disagree?

Dementia drug use 'killing many'

Needless use of anti-psychotic drugs is widespread in dementia care and contributes to the death of many patients, an official review suggests. About 180,000 patients a year are given the drugs in care homes, hospitals, and their own homes to manage aggression. But the expert review - commissioned by ministers - said the treatment was unnecessary in nearly 150,000 cases and was linked to 1,800 deaths. BBC

Life and death decisions with a disabled child

A mother of a disabled child says, "I stopped believing the doctors. I started believing in my daughter. And yet no one believed in me. There was no joined-up thinking. No early intervention, no support structure." The Independent

Related: It's a scary time for disabled people in the UK

Father drops right-to-life fight

A father who had been fighting to stop a hospital withdrawing life support from his seriously ill son has dropped his objections. The one-year-old, known as Baby RB for legal reasons, was born with a rare, genetic muscle condition that makes independent breathing impossible. The hospital was backed by the baby's mother. But the move had been strongly opposed by the child's father at a High Court hearing. BBC

A Photo Essay of Multiple Sclerosis

Patricia Lay-Dorsey, 67, wasn’t fond of the way she looked. Her wrinkles — the “dry creek bed” on her face — made her feel uncomfortable. So she made a series of close-up portraits of her face. Ms. Lay-Dorsey felt some shame over falling down because of multiple sclerosis. So she documented her daily routine. And, while exposing herself, Ms. Lay-Dorsey noticed something unexpected. “Somehow,” she said, “I began to feel more beautiful.” NY Times blog

Committee rejects N.H. assisted suicide bill

The New Hampshire House Judiciary Committee voted 14-3 against the bill that would let terminally ill patients over age 18 obtain lethal prescriptions, with safeguards to prevent abuses. Supporters of assisted suicide said the bill was flawed and teamed up with opponents to vote against recommending the measure to the full House. The committee has been working on the bill since September. The House votes on the recommendation in January. If the chamber accepts the committee recommendation, legislative rules make it nearly impossible for the issue to be brought up again next year. Boston Globe

Why Health Reform Will Be a Danger to Passive Patients

A sea change is coming in the way Americans experience and pay for healthcare—one that will require us to develop a whole new set of muscles. The thousands of pages of legislation penned to overhaul the nation's healthcare system touch every nook and cranny of medicine, changing the relationship of doctors and patients, rewriting textbooks of medicine with more focus on staying well, and setting new rules for how treatments are—or are not—blessed. US News

Susan Jacoby: On the avoidance of death in life

From a secularist point of view, the only moral issue is an individual's right to determine, insofar as that is possible, the conditions of his or her own dying and death. For many of us, that won't be possible because we will not be mentally competent at the end--and that's why it is so important to make our wishes known and delegate decision-making power to a trusted relative or friend. The reason why this issue has become another attack point for the religious right is not, as conservatives contend, fear of government control. It is, rather, the belief that only God has the power of life and death. That's one reason why the right regards assisted suicide with horror. There is also a profoundly conservative religious belief that suffering has some sort of intrinsic exemplary value. I reject that belief (as do many liberal religious believers). Washington Post

Limited Mobility of Another Sort

In theory, the continuing care retirement community, or C.C.R.C., makes great sense: build different types of senior housing on a single campus, or even in a single building, so that as residents need more care, they can transfer within the facility — from independent living apartments to assisted living units to a nursing home — instead of being uprooted from familiar surroundings. More than a half-million older Americans find this an attractive idea and have moved into such a retirement community. Yet ever since reporting a few years ago in an assisted living facility in Bethesda, Md., and hearing about a resident who pushed the wrong elevator button and then screamed in horror when the doors opened onto the nursing home floor, I have wondered how these transitions work in practice. NYTimes blog

Limited Mobility of Another Sort

In theory, the continuing care retirement community, or C.C.R.C., makes great sense: build different types of senior housing on a single campus, or even in a single building, so that as residents need more care, they can transfer within the facility — from independent living apartments to assisted living units to a nursing home — instead of being uprooted from familiar surroundings. More than a half-million older Americans find this an attractive idea and have moved into such a retirement community. Yet ever since reporting a few years ago in an assisted living facility in Bethesda, Md., and hearing about a resident who pushed the wrong elevator button and then screamed in horror when the doors opened onto the nursing home floor, I have wondered how these transitions work in practice. NYTimes blog

The Other Side of Sadness: What the New Science of Bereavement Can Tell Us About Life After Loss

We tend to understand grief as a predictable five-stage process of denial, anger, bargaining, depression, and acceptance. But in The Other Side of Sadness, George Bonanno shows that our conventional model discounts our capacity for resilience. In fact, he reveals that we are already hardwired to deal with our losses efficiently—not by graduating through static phases. Good Reads

Elderly couple's suicide pact

Dennis Milner, 83, and his wife Flora, 81, from Newbury, Berkshire, sent a statement to the BBC saying they had “chosen to peacefully end our lives” to avoid “a living death.” The couple’s bodies were discovered on Sunday. In the note, the couple said they hoped to draw attention to the “serious human dilemma” faced by those who want to end their lives. In handwritten notes below a typed section of the letter, Dennis Milner wrote: “Arranging this so that it does not fail has been very difficult and traumatic for us. This need not and should not be the case.” In a statement with the letter they said that they had enjoyed “a happy, loving and exciting life” and thanked the NHS for extending their lives. The couple’s daughter, Chrissy, told the BBC her parents were in good health but wanted to end their lives before they were unable to care for themselves. BBNews

When You're the Baloney in the Sandwich

Humorist Judy Schreur will present this lighthearted talk during the Caregiving: A Family Affair event on Saturday, November 14, from 10 am to noon at the Ryerson Auditorium in the Grand Rapids Public Library. This free event will also feature family caregiving essay contest winners, and a wide range of caregiver resource information from the Caregiver Resource Network. Registration is encouraged. To reserve your spot email the Area Agency on Aging of Western Michigan or call (616) 222-7055. Free parking with special parking lot ticket.

Get to Know: Faith Hospice

Faith Hospice, the only faith-based hospice located in Grand Rapids, provides comfort care to those with a life-limiting illness or condition as well as support to their families. "Our team of professionals, including doctors, nurses, social workers, chaplains, hospice aides and volunteers, serves patients in a variety of settings. If you or a loved one have been diagnosed with a life-limiting or life-threatening illness, call Faith Hospice today. You are not alone - we're here to help."

Dementia care partner support group

The Alzheimer's Association of Greater Michigan Chapter (West Michigan Region), ComForcare, and SarahCare Adult Day Care Center are co-sponsors of a support goupr for care partners of people with Alzheimer's disease or other dementias.

When? 2nd Monday of every month from 3:30-4:30 pm.

Where? at SarahCare Adult Day Care Center, Metro Health Village, 2024 Health Drive, Suite B, Wyoming, MI 49519

For information, call Alicia Junghans at (616) 285-7000 or call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900

Senior Home Care Blog

Visit the Senior Home Care Blog often to find the latest updates on family caregiving, home care, and tips on caring for the caregiver. Click 'Get the Feed' (top of the right-hand sidebar) and then 'Subscribe to this Feed' to be notified when updates are available.

Online newsletter: Caring Right at Home

Learn more about healthy aging and family caregiving. Sign up for the free monthly online edition of Caring Right at Home. Click 'subscribe now' from the upper left-hand menu. You may also browse past issues.

Get to Know: Caregiver Resource Network

Caregivers often become very isolated and feel alone in the daily tasks and challenges of caregiving. In the hope that no one has to “walk the caregiver path alone” it is the mission of the Caregiver Resource Network to provide family and professional caregivers with needed information and resources. Therefore this website provides a wide-range of educational fact sheets, articles, web links, and resource materials on topics related to caregiver well-being; respite care; health and wellness; legal and financial issues; and long distance caregiving, as well as programs and services available in West Michigan.

101 THINGS YOU MUST KNOW

A plethora of advice with links: To protect seniors from criminals . . . about researching long-term care . . . about pension rights . . . about protecting your health . . . for locating agencies that can help . . . for minding finances wisely . . . from attorney Constance L. Brigman.

What Is a Caregiver Contract?

It is essentially an employment agreement with one’s children. It may seem odd to put an employment agreement in place with family members, but it puts all the issues on paper when there is no crisis, so the entire family can work together and understand what the parents’ wishes are. Learn more.

Get to Know: Area Agency on Aging of Western Michigan

Established in April 1974, the Area Agency on Aging of Western Michigan exists to help older adults and persons with disabilities live in their community with independence and dignity. Find events and services near you.

Stay active, prevent falls

Staying physically active and exercising regularly can help prevent or delay some diseases and disabilities as people grow older. Older people of all ages have much to gain from staying active. Download this brochure depicting exercises that can be done from seated and standing positions.

Get to Know: National Private Duty Association

Home care choices can be difficult. The National Private Duty Association is here to help. Private duty home care agencies are companies that provide home care aides, companion care, homemaker services and may provide nursing services in the client's home or place of residence. Members of the NPDA employ trained caregivers and assume all responsibility for the payroll and all related taxes - this is never passed off to the customer. Find providers near you.

Parents Battle Over Disabled Boy

Parents in Britain are battling at the nation's high court in the case of Baby RB, a disabled boy whose father is opposing attempts by a hospital trust to deny him life-sustaining treatment. The mother is defending her decision to support the doctors' recommendation to terminate the one-year-old baby's life support. The boy has CMS, a condition that severely limits limb movement and the ability to breathe independently and he has been hospitalized since birth. His father, who is separated from the boy's mother, opposes taking his life by removing the life support.

"RB's mother has sat by her son's bedside every day since he was born," her attorney, Anthony Fairweather, said. "In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child." The baby's father and his attorneys argue the child's brain is unaffected by the condition and that he can see, hear, feel and recognize his parents. He argues a tracheotomy, where a hole is made in the neck to allow air to reach his lungs, would allow his son to leave hospital and be cared for at home. LifeNews

Australia's "Dr. Death" visits San Francisco

Philip Nitschke will bring his suicide seminar to the Buddhist Center in San Francisco, where he will teach attendees how to kill themselves. Shouldn't there be limits to assisted-suicide permissiveness? Not according to Nitschke, who bluntly takes assisted-suicide advocacy to its logical conclusion. If we each own our bodies, he says, and if self-termination is an acceptable answer to human suffering, then assisted suicide shouldn't be restricted to limited "subgroups," such as the dying. Indeed, in 2001 interview with National Review Online, Nitschke asserted that "all people qualify ... including the depressed, the elderly bereaved, the troubled teen." SF Chronicle

What To Do When Crisis Hits

Emergencies often strike without warning, and caregiving blogger Lynda Shrager has learned firsthand how important it is that we "take the time to organize our important paperwork before a crisis occurs." Everyday Health

Rationing Care at the Beginning of Life?

In the course of the debate over health care reform, some of the political rhetoric has focused on "rationing" and the idea of how much money can or should be spent on someone at the end of his or her life. But as care evolves, similar debates may someday surround how much can be spent at life's beginning. Few cases illustrate this as starkly as a baby born prematurely at 21 weeks and five days in Britain last month, who died as doctors declined to resuscitate him. ABC News

"Death Panels" Return

The provisions on advanced-planning directives labeled "death panels" by concerned observers have re-emerged in the final version of the US House of Representatives health-care reform bill. Moreover, the bill also lacks protective language that would prevent reimbursement of physicians counseling assisted suicide as a legitimate "end-of-life" option in states like Washington and Oregon.

Section 240 of HR 3962 "Affordable Health Care for America Act" requires insurance companies offering a "qualified health benefits plan" on the health insurance exchange to provide information related to "end-of-life planning" to enrolled individuals. Although the section stipulates that advance directives "shall not promote suicide, assisted suicide, euthanasia, or mercy killing," none of the terms are defined in the bill. That poses a problem since some states like Oregon and Washington have laws legalizing physician-assisted suicide, but these states employ different terms. LifeSiteNews

10 Things People With Cancer Don't Want to Hear

To commemorate the end of Breast Cancer Awareness Month, breast cancer survivor Marika Holmgren recently published a top-10 list of common (and unhelpful) remarks uttered to cancer survivors. Care Pages