Dr. David Tribble The New England Journal of Medicine published a study recently in which 151 lung cancer patients received either usual treatment or usual treatment plus palliative care. The palliative care recipients had better quality of life scores; were more likley to have decided against resuscitation; received less chemotherapy; and survived, on average, almost 3 months longer. Previously, a study has shown that the simple act of a clear conversation about prognosis and options led to better symptom control and fewer oncologic interventions without shorter survival. Another showed that for patients with 5 specified cancers and congestive heart failure, hospice care is associated with a longer survival. We who practice palliative medicine do so not because we support giving up, but because we have experienced the improvement in life that comes with adequate symptom control, and with thoughtful decision-making on the value of some therapies whose life-prolonging benefits are open to question. Now we have, in multiple studies, solid evidence that palliative medicine not only does NOT shorten survival, but actually is the best chance of extending it for some. Electing palliative care is not an act of surrender. It is, for many, the best opportunity for survival that is not only the most comfortable, but also the longest. Active medical intervention for cure or disease modification does not necessarily equate to longer survival or to better qualitative survival. I look forward to the concurrent care demonstration projects (a combination of curative and hospice care), both for the opportunity to provide good palliation (comfort measures) to those not yet ready to abandon disease-modifying treatment and for the opportunity to look at this survival issue on a much larger scale. Dr. David Tribble is Alive Hospice’s chief medical officer. http://alivehospice.org/blog/2010/09/03/hospice-care-is-not-surrender/
Friday, September 3, 2010
Hospice for the Gallaghers, hospitality from the Gallaghers « The In Box
Imagine for a second that your doctor is telling you point-blank that you're going to die.
Now imagine that there's a reporter standing on your doorstep, asking you to talk openly and candidly about that experience.
This is exactly the situation that Bill and Tomi Gallagher have faced since last winter.
"I think we didn't realize that Bill wasn't going to get better until the doctor said it very frankly," Tomi says. "So you kind of have to face that."
The Gallaghers signed up for hospice care with High Peaks Hospice and also agreed to meet with me every week or two to talk about their experience.
That kind of generosity isn't exactly rare in the North Country.
But it is a kind of trust that does sometimes give me pause about the work I do.
When someone shares with me a story this important and sensitive and difficult, it's a blessing and a gift to be sure. But it's also a daunting responsibility.
So in case it doesn't come through loud and clear in the series The Hospice Path that begins today, here are the two big take-aways.
First, hospice can be incredibly valuable for people trying to find as much richness as possible at the end of their lives. Here's how Tomi puts it:
"We needed some help and direction in kind of trying to continue on with life. I mean, hey — let's not pull the lid over yet, you know?"
Secondly, the Gallaghers are people who find a way to give and show hospitality even when their own challenges are monumental.
I think you'll hear how open and vulnerable and honest they've been in describing this time in their lives.
But you'll also get a sense for their courage.
My hope is that their story will help others in the North Country to understand that there are people and services available when their own crisis comes.
If you've had experience with hospice and feel comfortable talking about it, please post comments below.
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Tuesday, August 31, 2010
Tuesday, August 24, 2010
Frank Talk About Care at Life’s End
By JANE E. BRODY
Published: August 23, 2010
Legislators have begun to recognize the medical, humanitarian and economic value of helping terminally ill patients and their families navigate treatment options as they approach the end of life.
Getty Images
Last week, over the objections of New York State’s medical society, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness or condition to offer them or their representatives information about prognosis and options for end-of-life care, including aggressive pain management and hospice care as well as the possibilities for further life-sustaining treatment.
The Medical Society of the State of New York objected, saying that the new law would intrude “unnecessarily upon the physician-patient relationship” and mandate “a legislatively designed standard of care.”
A similar provision in the original federal health care overhaul proposal, which would have reimbursed doctors for the time it takes to have such conversations, was withdrawn when it was erroneously labeled by conservatives as a “death panel” option.
Also last week, a study in The New England Journal of Medicine reported that among 151 patients with newly diagnosed metastatic lung cancer, those who received palliative care, which is care focused on symptoms, along with standard cancer therapy had a better quality of life, experienced less depression, were less likely to receive aggressive end-of-life care and lived nearly three months longer than those who received cancer treatment alone.
The New York law was sponsored by Assemblyman Richard N. Gottfried and Senator Thomas K. Duane, both Democrats of Manhattan, at the request of Compassion and Choices of New York, an organization that seeks to improve end-of-life comfort care and reduce the agony often associated with dying in this era of costly can-do medicine.
The organization said the law addresses “a major concern for terminally ill patients and their families, who often face the most important decision of their lives — how to live their final days — without being informed of their legal rights and medical options.” The law obligates health care providers to volunteer information on a complete menu of care options — if patients want to know about the options.
Tough Conversations
While some patients, especially those who are young or are the parents of young children, choose to pursue aggressive treatment for their diseases until their dying days, studies have shown that most terminally ill patients opt for comfort care after receiving honest information about their survival prospects and the benefits and risks of further disease-directed therapy.
For example, in a study published in the Journal of the American Medical Association in October 2008, Boston researchers found that patients who had end-of-life discussions with their physicians “were more likely to accept that their illness was terminal, prefer medical treatment focused on relieving pain and discomfort over life-extending therapies, and have completed a do-not-resuscitate order.”
When compared with patients who had no such discussion, they were also more likely to be enrolled in outpatient hospice for more than a week and less likely to be placed on mechanical ventilators, or to be resuscitated if their hearts stopped, or to be admitted to intensive care units.
Contrary to fears that such discussions cause emotional harm to patients, the researchers reported that there was no increase in serious depression or worry and that the worst psychological distress occurred in patients and family members when end-of-life talks had not taken place. The poorest quality of life and worst bereavement adjustment resulted when patients received aggressive care during the last week of life, the researchers found.
The first author of the study, Dr. Alexi A. Wright, a medical oncologist at the Dana-Farber Cancer Institute, concluded that there was “a need to increase the frequency” of end-of-life conversations.The new law in New York, like a similar one in California, seeks to overcome physician resistance to talking frankly with terminally ill patients. Many studies have shown that such discussions can reduce costly aggressive yet futile treatments, improve the quality of remaining life for patients and their families and result in more dignified deaths unencumbered by medical technology.In a study published last year in the Archives of Internal Medicine, terminally ill patients who talked about hospice with their doctors were nearly three times as likely to take advantage of this service, which is covered by Medicare and is far less costly than aggressive hospital-based care.
More Yet to Be Done
Still, according to one palliative care expert, the law is not enough. Dr. Diane E. Meier, director of the Hertzberg Palliative Care Institute at Mount Sinai School of Medicine in New York, said in an interview that the law does not help doctors and nurses acquire the expertise they need to hold meaningful end-of-life discussions with their patients. To increase competency in palliative care, she said, courses in medical and nursing schools and a continuing-education requirement for practicing physicians are essential.
“Doctors need to know how to identify when patients are on the decline, be able to initiate conversations with patients and/or family members, discuss what to expect in the future and the pros and cons of alternative care options, and know how to provide support as a patient’s illness progresses,” Dr. Meier said.
Another problem is the admittedly poor ability of physicians to determine a patient’s remaining life expectancy, except perhaps when death is but a week or two away. Even with advanced cancer, when death may be most predictable, doctors are often wrong either because the disease follows an unexpected course or because doctors are reluctant to acknowledge their inability to delay death.
For any number of diseases that are considered terminal, like Alzheimer’s disease or emphysema, patients can survive many years. Dr. Meier maintains that all patients, regardless of how near or far death may be, should be told about and receive palliative care whether or not they are treated for their underlying disease.
In an editorial accompanying the new report in The New England Journal of Medicine, Dr. Meier and Dr. Amy S. Kelley wrote, “Physicians tend to perceive palliative care as the alternative to life-prolonging or curative care — what we do when there is nothing more that we can do — rather than as a simultaneously delivered adjunct to disease-focused treatment.”
Palliative care should not be limited to terminally ill patients, Dr. Meier insists. “Life-threatening illness, whether it can be cured or controlled, carries with it significant burdens of suffering for patients and their families and this suffering can be effectively addressed by modern palliative care teams. Perhaps unsurprisingly, reducing patients’ misery may help them live longer.”
This article has been revised to reflect the following correction:
Correction: August 25, 2010
The Personal Health column on Tuesday, about discussions between doctors and patients regarding end-of-life care, described incorrectly the professional credentials of Dr. Alexi A. Wright of the Dana-Farber Cancer Institute and misstated her role in a 2008 study on the subject. She is a medical oncologist, not a palliative care specialist, and she was the first author of the study, not the leader of the research team. (Holly G. Prigerson was the lead investigator.)
Sunday, August 22, 2010
HealthCare Chaplaincy
Issue 16, August 2010
- Patient-Centered Care Urged by New Head of Medicare and Medicaid Services
- Trustee and Staff Support Internship Program That Encourages Diversity in Health Care Management
- Handmade Shawls Comfort Patients
Patient-Centered Care Urged by New Head of Medicare and Medicaid Services
Donald Berwick, MD is a revolutionary.
And as the new director of the U.S. Centers for Medicare and Medicaid Services, he is in a position to make change happen.
In an essay in Health Affairs, a leading journal of health policy thought and research, Dr. Berwick argues for putting the consumer of medical care first.
Donald Berwick, MD, is director of the Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services. Dr. Berwick previously served as president and chief executive officer of the Institute for Healthcare Improvement, clinical professor for pediatrics and health care policy at the Harvard Medical School and professor of health policy and management at the Harvard School of Public Health. He proposes this new definition of patient-centered care: “The experience of transparency, individualization, recognition, respect, dignity and choice in all matters, without exception, related to one’s person, circumstances and relationships in health care.”
Dr. Berwick recognizes that this “will involve some radical, unfamiliar and disruptive shifts in control and power, out of the hands of those who give care and into the hands of those who receive it.”
He envisions a scenario where hospitals would have no restrictions on visits by family or friends; the patients themselves would determine what they eat and what they wear; medical records would belong to the patient; operating room schedules would be designed to minimize waiting time.
Dr. Berwick is responding to what he sees as the current disaffection of patients.
“Ask patients today what they dislike about health care,” he says, “and they will mention distance, helplessness, discontinuity, a feeling of anonymity – too frequently properties of the fragmented institutions in which modern professionals work and train.” Dr. Berwick believes the focus should be on giving the patient the information, incentives and ability to make their own decisions in consultation with their doctor.
To accomplish this revolution in health care, much will depend on how physicians are trained, Dr. Berwick acknowledges. “The education of the new professional will reverse the academic notion that we must suppress our emotions in order to become technicians. We will not teach future professionals emotional distancing as a strategy for personal survival. We will teach them instead how to stay close to emotions that can generate energy for institutional change, which might help everyone survive."
Patient-centered care, as Dr. Berwick describes it, means that the patient receives treatment that is consistent with his or her goals, values, situation, and choices.
We at HealthCare Chaplaincy agree, as this philosophy of patient-centered care permeates all of our work in research, education, and clinical practice, and our future plans.
Dr. Berwick’s complete essay in Health Affairs can be found online at http://bit.ly/bozvmc
Trustee and Staff Support Internship Program That Encourages Diversity in Health Care Management
Trustee Mary Medina, founding director of the GNYHA Center for Trustee Initiatives (far left) and Jeanne Lee (far right) meet with the students. Over the past eleven years, the Greater New York Hospital Association (GNYHA) has created the nation’s largest and most successful summer internship program for African-American, Asian and Latino college undergraduate and graduate students who are pursuing a degree in health services management. Partnering with GNYHA in this Summer Enrichment Program are the American Hospital Association’s Institute for Diversity in Health Management, the National Association of Health Services Executives, and the Association of Hispanic Healthcare Executives.
The twelve-week long program is designed to increase the pipeline of racially and ethnically diverse individuals in health care leadership positions.
The program holds special interest for HealthCare Chaplaincy trustee Mary Medina, who is founding director of the GNYHA Center for Trustee initiatives. In that role she is responsible for recruiting candidates to serve on the governing boards of hospitals and continuing care facilities, with a special emphasis on diversity.
“Hospitals need talented leaders in a variety of areas,” says Mary. “People think of hospitals as nurses and doctors, but we also need attorneys, financial managers and business executives. We need a source of talent that will be able to handle the changing health care community.”
This summer two members of HealthCare Chaplaincy’s staff met with the students. Jeanne Lee, recent executive vice president and COO, shared anecdotes about her own career path. She also laid out some sobering facts. “America is aging,” Jeanne told the group. “Twenty five percent of today’s Medicare budget is spent in the last six months of a person’s life. Most of this goes to support costly medical intervention.” She stressed the need to have meaningful conversations with patients about their treatment preferences and wishes, and that a chaplain should be part of this discussion.
The Rev. Florine Thompson, director of pastoral care and education at St. Luke's-Roosevelt Hospital Center, explained the value that professional chaplains bring to health care administrators: “We come with more than a seminary degree and a bible. Professional chaplains attend to the spiritual needs of all patients regardless of faith. We are sensitive to their cultural diversity.”
Handmade Shawls Comfort Patients
An elderly Jewish woman was hit by an SUV. Badly injured, she was brought to the Hospital for Special Surgery. During her recovery she was given a prayer shawl, which she kept on her lap as a reminder that someone really cares for her. Attached to the shawl was a small, hand-written label with the words: “Crocheted by hand and threaded with prayers of love and hope. This shawl is a gift for you. From Lucy, St. Joseph Church, LIC.”
A young Roman Catholic man was badly beaten, his ankle crushed from the assault.
He was given a prayer shawl that he kept with him during his stay at the hospital, and clutched so tightly when he was getting his IV that he was afraid he’d tear it.
A Muslim woman was admitted for spinal surgery – a long, painful ordeal. She was badly in need of someone to care. Receiving a prayer shawl was very meaningful to her. “I hold onto it. I pray with it. I’m thankful for it.”
“Prayer shawls are knitted or crocheted for us by a prayer group from a church in Long Island City,” says HealthCare Chaplaincy’s Sr. Margaret Oettinger, OP, director of pastoral care at Hospital for Special Surgery. “They had heard about us and asked how they could be of help. They made 100 shawls for us, each with a prayer and blessing for the recipient. Upon completion, the shawls received a final blessing at a prayer service, and then were sent to us. We give them to patients badly in need of comfort.”
The idea for prayer shawls originated in 1998 by two graduates of the Women’s Leadership Institute at the Hartford Seminary. They combined compassion and their love of knitting and crocheting into a prayerful ministry and spiritual practice.
Since then, prayer shawl ministries have sprung up in many churches around the country.
Some recipients have continued the kindness by making a shawl themselves, and passing it on to someone in need. Thus the blessing ripples from person-to-person, with both the giver and receiver feeling the unconditional embrace of a sheltering, comforting spirit.
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We appreciate your interest and support. Please feel free to send any questions or comments to comm@healthcarechaplaincy.org.Sincerely,
The Rev. Dr. Walter J. Smith, S.J.
President & CEO
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Monday, August 9, 2010
The Cost of Dying: End-of-Life Care - 60 Minutes - CBS News
via cbsnews.com
The Cost of Dying: End-of-Life Care - 60 Minutes - CBS News http://www.cbsnews.com/stories/2010/08/0... 60 Minutes on CBS News: The Cost of Dying: End-of-Life Care - Patients' Last Two Months of Life Cost Medicare $50 Billion Last Year; Is There a Better Way? 1 of 7Choose a Thumbnail No Thumbnail Unfortunately, hospice care is still an after thought.
Friday, July 30, 2010
Any connections with the Grand Ole Opry?
At this time, the man is not physically able to make the trip from North Georgia to Nashville, however there may be a way to bring a bit of the Opry to him. I am looking for anyone with ideas or Opry contacts that could help us get this dream fulfilled. The planned date for the dream fulfillment is August 20th.
Maybe a picture autographed.
Maybe a Grand Ole Opry sign.
Maybe a tshirt.
The beauty of the Second Wind Dreams program is that there is truly only 6 degress of separation. Someone in the social media world has an answer or someone you know has an answer.
I'll just sit here and wait while you talk among yourselves..........
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