Associated Press Article on Overtreatment at the End of Life

AP Medical Writer Marilynn Marchione wrote an article published in multiple newspapers this morning that addresses aggressive treatment received by patients at the end of life. She states that the average time spent in hospice and palliative care is falling, while hospitalizations during the last six months of life are rising.

Doctors can't predict how soon a patient will die, but they usually know when an illness has become incurable. Even then, many of them practice "exhaustion medicine" — treating until there are no more options left to try, said Dr. Martha Twaddle, chief medical officer of Midwest Palliative & Hospice Care Center in suburban Chicago.

A stunning number of cancer patients get aggressive care in the last days of their lives, she noted. One large study of Medicare records found that nearly 12 percent of cancer patients who died in 1999 received chemo in the last two weeks of life, up from nearly 10 percent in 1993.

Guidelines from an alliance of leading cancer centers say patients whose cancer has spread should stop getting anti-cancer medicine if sequential attempts with three different drugs fail to shrink their tumors. Yet according to IntrinsiQ, a cancer data analysis company, almost 20 percent of patients with colorectal cancer that has spread are on at least their fourth chemotherapy drug. The same goes for roughly 12 percent of patients with metastatic breast cancer, and for 12 percent of those with lung cancer. The analysis is based on more than 60,000 cancer patients.

Providing Medical Care for Senior Couples Together

The New Old Age blog wrote about
geritricians who see aging couples together. Doing so helps assess not
only the patient's medical needs, but the burden caregiving may be
having on the healthier spouse. Paula Span writes about a couple living
in Washington, DC:

But they’re doing rather well, it seems. “They’re enjoying a little renaissance in their 60th year of marriage because they’re a little healthier,” said their doctor, Eric DeJonge, director of geriatrics at Washington Hospital Center. (Actually, it’s their 64th year.)

And part of the reason, Dr. DeJonge is convinced, is that both spouses see the same physician. He visits them at home, with follow-up visits by nurse practitioners and, when necessary, social workers. (I’ll say more about housecalls, an old idea made new again, in a future post.) “It really helps me care for each individual by caring for the whole. They almost become a single unit,” he said in an interview.

Having one doctor care for two spouses is one of those simple but effective ideas that can make a real difference in older patients’ health. “I learn more about what’s going on,” said Dr. Bruce Leff, a professor of geriatrics at Johns Hopkins School of Medicine and a practicing geriatrician, who often sees married patients together. “Patients don’t always tell you everything, but the spouse is likely to fill in. ‘Tell the doctor about this.’ Or, ‘Be sure to ask her about that.’”

Besides, treating couples together allows doctors to gauge the toll that caregiving takes, physically and emotionally, on the less frail partner. Dr. Leff, for example, sometimes considers medications — for incontinence, say, or for the agitation that may accompany dementia — because he sees that the other spouse is overwhelmed and can’t undertake the more behavioral treatments he’d normally recommend. Keeping the caregiving spouse stable and functional is what helps keep the sicker spouse out of an institution.

The Grieving Spouse

Anita Creamer writes about spousal bereavement for the The Sacramento Bee. She notes that 1 million Americans lose their spouse each year.

The death of a spouse redefines life in the most profound way possible. In a world of couples, sudden and unwanted singleness can seem isolating and lonely. Learning to be alone – and to enjoy being alone – can be an enormous hurdle for widows and widowers. And learning to reach out again can be the biggest hurdle of all.

Some people rebound too quickly, before they've had the chance to process their grief. Others, more fearful than needy, wait way too long.

"We pigeonhole people all the time," said Joe Lumello, bereavement services manager at Yolo Hospice. "We tell them, 'You have this amount of time to grieve.' It's our job here to debunk that. Nothing breaks my heart more than when somebody says, 'It's been six months now. I should be over it.' "

Rule No. 1 of successful re-entry from widowhood: There are no rules.

"It takes as long as it takes," said Denise Rose, the Yolo Hospice bereavement counselor who helps run Dunaway's new support group for people who've decided it's time to explore new experiences and relationships.

"We can't control grieving. It will control us."

Jane Brody also wrote losing a partner in The New York Times this week from a personal perspective, her husband died earlier this year.

When asked how I’m doing since my husband died in March, I often respond that I need a 48-hour day. It’s a challenge to be Richard and Jane and still do my work and enjoy my life. I have yet to balance the checkbook, there are piles upon piles of unprocessed paperwork everywhere, and, if not for the help of my sons, I would be clueless about managing my finances.

But I do keep my walk swept, and I’ve cleaned up two large yards, tasks we had always done together. When the man who came to replace my gas meter found a hole leading to the chimney and said he would have to turn off my furnace, I said “No you don’t.” I ran to the hardware store, bought a can of “instant” plaster, climbed to the top of a ladder and, straddling it and the adjacent furniture, this 4-foot-10-inch, 69-year-old woman plastered a rather large hole near the ceiling while the meter man waited and didn’t even offer to hold the ladder.

HFA receives many calls from people looking for bereavement support. Your local hospice (find one here) is a great source of support. Many hospice offers support groups for all members of the community, not just families of those who died while receiving hospice services. For more information on finding a support group, see our website.

Cancer and Adolescent Grief

Candice Hurston's father died when she was 15. The gravity of his Stage 4 lung cancer diagnosis was something the teen did not immediately understand. After his death, she wrote an essay about how her father's cancer and eventual death effected her. The essay was published in VOX Teen Newspaper, published in Atlanta. The Atlanta-Journal Constitution also wrote about Candice's essay and her experience of grief.

Candice writes about how she did not want to face that her father would die:

For months after the diagnosis, time moved in a foggy haze. I knew I was alive, and I knew I was functioning, but I wasn’t mentally present for any of it. My father told me years ago that that kind of thing happened to him a lot when he’d get overwhelmed with life. Black outs were what he called them. It was like I was watching myself from the outside and couldn’t control anything I did.

I didn’t want to believe my father was dying. When he lied in his bed coughing up blood, I thought he was faking. When he went through bouts of confusion and couldn’t remember where he was, I thought he was making a joke. I wanted to scream “Cut the act Dad, we all know you’re fine!”

But he wasn’t fine. I finally realized that when he was no longer able to feed himself, and I had to hold his spoon like he’d done for me 15 years before.

On Tuesday, June 15, HFA is hosting the final of a series of webinars focused on "Helping Children and Adolescents Cope with Grief and Loss." Previous webinars are available on demand and examine bereavement camps and lessons from recent research into child and adolescent bereavement. Tuesday's webinar focused on the role of internet support for grieving children.

(The artwork seen here appeared on the cover of HFA's 2010 teleconference companion book, Living With Grief: Cancer and End-of-Life Care. Artwork by Delaine Driscoll, 9, for The Children's Room Center for Grieving Children in Arlington, Massachusetts.)

New Colorado Laws Focus on Improving End-of-Life Care

The Denver Post highlighted several new laws signed by Governor Bill Ritter that aim to improve end-of-life care options for residents of Colorado. Included are the development of a MOST form (Medical Orders for Scope of Treatment). Unlike an advance directive, the MOST form is a medical order from a physician and directs medical personnel on what care to provide. These types of forms are used in several states (sometimes under the name POLST, Physicians Orders for Life-Sustaining Treatment, or MOLST.) See www.polst.org for information on current use of the orders around the U.S.)

The laws would also expand hospice coverage for Medicaid patients to those with a nine-month terminal diagnosis, up from the current six-month diagnosis, and provide Medicaid coverage for inpatient hospice care.

The new laws provide (from the Denver Post):

Living Will Act — A complete repeal and revision of the act regarding do-not-resuscitate orders. The old version made living wills applicable only if a person was unconscious or incompetent to make decisions and had been diagnosed by two physicians with a terminal illness. The new version will make living wills apply to people who have suffered a traumatic brain injury and will allow more flexibility and detail in a person's last wishes.

Living Will Registry — This law allows a public or private entity to create a centralized registry for living wills. Lawmakers said a mandate to create a state-run database would not have passed this year because of budget restraints. At least one entrepreneur has shown interest in building the registry, which could help EMTs and doctors find out quickly whether a patient having a heart attack or involved in a car crash has a do-not-resuscitate order.

The MOST Form — A new standardized form called Medical Orders for Scope of Treatment will be available to patients who are terminally ill or living in nursing homes. The form specifies whether a person wants CPR, antibiotics, artificial nutrition or hydration, "comfort measures only" or "full treatment." Unlike a living will, which is considered an expression of patient wishes, the MOST form carries the power of doctors' orders and is intended to follow the patient from a home to a nursing home to a hospital.

Earlier Hospice Coverage — This law would expand Medicaid coverage for hospice from a six-month terminal diagnosis to a nine-month diagnosis. If the federal Medicaid program approves the change, bill supporters are hopeful private insurance companies will adopt similar policies.

Medicaid Coverage for In-Patient Hospice Care — Under the new law, inpatient hospices will receive reimbursement from Medicaid to cover room and board, similar to nursing homes. The law requires federal approval.

June 2010 Palliative Care Grand Rounds

The June edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the The Kenneth B. Schwartz Center's Bedside Manner blog

Bedside Manner focuses on compassionate health care. We thank them for hosting PCGR!

The Death We Want vs. The Death We Get

ABC News' Dan Harris reports on the disparity between how people say they want to die and the end-of-life care most Americans receive.

A 1996 Gallup Poll revealed that 90 percent of Americans would prefer to be cared for and die at home if faced with a life-threatening illness. In a Harris Interactive Poll conducted in 2002, 86 percent of people with a terminal illness indicated they would prefer to receive end-of-life care at home.