Atul Gawande Highlights End-of-Life Care in the New Yorker

An early online edition of August's The New Yorker features an essay by Atul Gawande titled "Letting Go: What should medicine do when it can't save your life?" He discusses how our current medical system approaches end of life, and how patients and their families struggle to navigate their options once there are no curative therapies available. Gawande does a good job of dispelling some of the misconceptions people have about hospice care and the article emphasizes some of the different ways we could approach the care of dying patients. He admits he knew little about hospice and he describes going on patient rounds with Sarah Creed, a hospice nurse:

Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?

“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.

Creed enters people’s lives at a strange moment—when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. “Ninety-nine per cent understand they’re dying, but one hundred per cent hope they’re not,” she says. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”

Many Mourn the Death of Leah Siegel

Being a leading authority on death, dying and grief makes it no less difficult when we must endure a personal loss. On Monday, Hospice Foundation America learned of the death from breast cancer of Leah Siegel, a 43-year old mother of three in Dallas. Leah was the daughter of Myra MacPherson, a long-time member of HFA's Board of Directors. Leah chronicled her two-year journey with the disease on a blog that served as an inspiration to others and, her mom said, as a way for her to cope with her illness. We took comfort in knowing that Leah was receiving hospice care. Our hearts and prayers are with Leah’s family and our dear friend Myra.

New Spanish Handout Available at Hospice Information Center

HFA’s Hospice Information Center expands its print offerings with “Cómo Cuidar a Alguien que está Muriendo” (Caring for Someone Who is Dying).  This five-page Spanish handout is free for organizations to download, reproduce and share in their entirety.

Other Spanish resources include, “Cómo Enfrentar una Pérdida Repentina” (Facing Sudden Loss) and “Sus Amigos necesitan Ayuda” (Your Friend Needs Help). Chinese and Vietnamese resources will be available in coming weeks.

Hospice Information Center’s Print Resources are designed to reach a diverse community, assisting hospices, hospitals, home health organization and all those working with families of patients at the end of life share important information in a culturally-sensitive manner.

Hospice Foundation of America’s mission is to help those who cope personally or professionally with terminal illness, death, and the process of grief and bereavement. This project is provided through the support of a grant from the Centers for Medicare and Medicaid Services (CMS) to support hospice and end-of-life care outreach and education.

Awards Honor Excellence in End-of-Life Care for Programs and Physicians

The 2010 recipients of Circle of Life Award^® were recently announced. The award celebrates innovation in palliative and end-of-life care programs. Kansas City Hospice & Palliative Care in Kansas City, Mo.; Snohomish County Palliative Partnership in Everett, Wash.; and the Department of Veterans Affairs (VA) New York/New Jersey Healthcare Network will each receive their award later this week. In addition, five other programs were issued citations of honor.

For more information on the Circle of Life Award, now in its eleventh year, see the American Hospital Association's website.

. . . . . . . . . . . .

Focusing on individual physicians' contributions to improving end-of-life care, nominations for the 2011 Hastings Center Cunniff-Dixon Physician Awards are being accepted now through September 30, 2010. The Hastings Center, in collaboration with the Cunniff-Dixon Foundation and The Duke Institute on Care at the End of Life present the awards annually to encourage excellent end-of-life care. All nominees must be licensed physicians practicing in the United States.

Two awards are given to a senior and a mid-career physician demonstrating a serious commitment to end-of-life care and three awards go to physicians at the beginning of their careers in end-of-life care.

View the video below about the award and download the nomination form from the Hastings Center website.

How Does the U.S. Rank in Quality of Care for the Dying?

The Economist has published a ranking of the quality of end-of-life care in various countries, researched by its Economist Intelligence Unit. Factors considered include public awareness of end-of-life options, availability of training, access to pain medications, financial burden to patients and doctor-patient transparency. Britain ranked first in the study, while the United States ranked 9th. CNN's Paging Dr. Gupta Blog reported on the study:

The report also noted that while the U.S. has government-funded reimbursements for hospice care through Medicare and Medicaid, patients in the U.S. need to give up curative treatment in order to obtain reimbursements.

“That’s completely different than from the U.K., where people can continue to have cancer treatment alongside palliative care. So in the U.S., hospice care typically is about end-of-life care,” professor Sheila Payne, director of the International Observatory on End-of-Life Care, says in the report.

Spencer Levine from the Hospice Foundation of America said that despite the either-or option, opting for hospice care in the U.S. doesn’t mean patients have reached a dead end.

“If there’s a curative therapy that comes along, experimental or otherwise, and you say ‘I want to give this a try,’ you can opt out of the hospice benefit, and at a later date, if or when conditions for you change, you opt back in again without penalty,” he told CNN.com.

“People kind of think of it like Hotel California – you can check in but never leave – but it’s not like that. You do have choices you can exercise,” he added.

The full white paper is available at: www.eiu.com/sponsor/lienfoundation/qualityofdeath.

July 2010 Palliative Care Grand Rounds

The July 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 GeriPal blog.

Thanks to GeriPal for hosting PCGR again!

Ethics and Empathy in Medical School

Last week's Boston Globe highlighted an innovative program at Harvard Medical School that uses Greek dramas to engage medical students and professionals in end-of-life care ethics discussions. Correspondent Patrick G. Lee writes about the program:

Several professors, doctors, and students who have taken part in End of Life agree that the 90 minutes of raw, honest theater and emotional discussion add a dimension of reality to medical ethics education that textbooks cannot.

“An awful lot of what goes on in taking care of patients involves feelings, like trust and hope and compassion,’’ said Christine Mitchell, a nurse and director of the office of ethics at Children’s Hospital Boston. Mitchell attended both of the performances Harvard has hosted this year. “We usually focus on the head part and not the heart part. It’s not easy to combine the two.’’

If Bryan Doerries, the project’s founder, has his way, more medical schools will employ ancient Greek drama to strengthen their medical ethics programs. The two scenes used in the End of Life readings illustrate the ethical dilemmas and emotional baggage that complicate medical situations for the terminally ill, their families, and caregivers.

“This was dramatically different than what we had done before,’’ said Dr. Sadath Sayeed, who teaches Harvard Medical School’s ethics class and helped bring the program to the school. “It’s a lot about emotion, the feelings, the experience itself. It’s harder to get that in a classroom.’’

A letter from a hospice chaplain in response to the article urges more medical schools to form partnerships with hospice and palliative care programs so students can gain hands-on training in end-of-life care.

In 2005, HFA examined ethical dilemmas at the end of life as part of its annual education program. Some highlights:

• Case Study: “Please don’t tell her.” Family Opposition to Breaking Bad News
  San Diego Hospice and Palliative Care
  
• When Families Disagree: Family Conflict and Decisions
  Samira K. Beckwith
• Case Study: Sarah: Autonomy and Medical Paternalism
  Hospice of the Bluegrass

Aging Expert Dr. Robert Butler Dies

HFA salutes the life and work of Dr. Robert Butler, who recently died. Dr. Butler was a psychiatrist and aging expert who was the founding director of the National Institute of Aging and the founder of the United States’ first geriatrics department at Mount Sinai School of Medicine.

Dr. Butler appeared on HFA’s 2002 nationally broadcast Living With Grief educational program, “Loss in Later Life.”

POLST and Patients End-of-Life Care Preferences Examined

A study appearing in the July issue of the Journal of the American Geriatrics Society shows that nursing home patients who have a POLST (Physicians Orders for Life-Sustaining Treatment) form are more likely to receive care they wanted than those who do not. The study looks at the medical records of over 1,700 nursing home patients in three states that have a POLST program: Oregon, Virginia, and West Virginia. From Kaiser Health News:

"It is really unusual to find something that has an effect on the kind of treatments people receive and ensure that they are consistent with what they want. It seems like it should be easy to do and it's actually really, really hard," said Susan Hickman, of Indiana University, who is the lead author of the study.

The study found that people with POLST forms who said they wished to receive care primarily for pain relief were 59 percent less likely to receive unwanted treatments than those with only a "Do Not Resuscitate" order. POLST participants who requested fewer medical interventions still received pain management treatments at similar levels to other patients, while those who asked for full treatment on their POLST forms were just as likely to receive it as other patients. The program also allows patients who do not want extraordinary resuscitation measures to detail other treatments that they do want.

For more information on which states are currently using POLST, see this website hosted by the Oregon Health & Science University.

HFA Launches Hospice Information Center

Hospice Foundation of America (HFA) is pleased to announce the launch of its newest educational offering, the Hospice Information Center for families, friends and professionals. This centralized resource is part of “HFA CARES: Hospice Foundation of America’s Conversations, Advice, Resources and Education Series,” funded by the Centers for Medicare & Medicaid Services, and can be found at www.hospicefoundation.org/infocenter.

“For over seventeen years, HFA has been the leader in presenting high-quality educational programming on hospice care, grief and loss, and end-of-life issues. Through our annual teleconference, we communicate with large and diverse audiences,” said Amy Tucci, President/CEO of HFA. “We are pleased that funding from CMS has given HFA the opportunity to develop the Hospice Information Center, which provides new ways for consumers and professionals to easily access information, resources, and education programs.”

The resources in the Hospice Information Center make it easier for family and friends to learn about hospice and how it can help people cope with some of life’s most challenging situations, in a format that is accessible and understandable. The Hospice Information Center offers opportunities to:

--Listen to the Voices of people who have experienced hospice, as well as experts who work in hospice and bereavement care.

--Educate Yourself and Others about the basics of hospice care, grief, and caregiving. Online presentations are available in a convenient, user-friendly format; free CEs are available for some programs.

--Read and Share Resources on end-of-life care, hospice, and grief. HFA has developed one-page Fact Sheets on many topics, which are available to download and share for free. Print resources are also available in Spanish, and materials in Chinese and Vietnamese will be available within a few weeks.

--Ask HFA questions about hospice care, caregiving, and grief.

The programming also provides hospices and other community organizations the opportunity to educate staff and volunteers about the basics of hospice care, caregiving, and grief, and links are provided to guide viewers to more information on a variety of subjects.

Hospice Foundation of America (www.hospicefoundation.org ) is a non-profit organization whose mission is to help those who cope personally or professionally with terminal illness, death, and the process of grief and bereavement. This project is provided through the support of a grant from the Centers for Medicare and Medicaid Services (CMS) to support hospice and end-of-life care outreach and education. CMS funds of $571,000 with HFA in-kind services of $5,710 are funding a variety of outreach and educational programs, including this project.