Ruth Williams

Last night, Joannie Rochette skated an amazing program in the 2010 Olympic Games in Vancouver. Under ordinary circumstances, no one would be surprised by the talented Canadian’s performance. But this time, it was extraordinary! Not due to her triple-this or triple-that, but due to her ability to offer a lovely program as a gift to her mother, who was so abruptly taken from her by a heart attack on Sunday, just two days earlier.

Could any of us be focused enough to continue as she did? We might quickly respond, “Absolutely not!” However, many individuals who have recently suffered a tragic loss have gone ahead and walked through a graduation ceremony, a wedding, a final exam… We may not be Olympic skaters, but sometimes it’s surprising just what we can pull off in a crisis.

Joannie Rochette was an only child. She and her mother were extremely close. I get that. My daughter (an “only”) and I are very close. Could she go on with a big event in her life – without me? Right now, my own daughter’s “Olympic event” on the horizon is her wedding. Somehow, I believe she could go through with her wedding, even if I were to leave her physically. Why? Because love goes so deep. And love is the sustaining force we can call upon in a crisis.

Her mother, Thérèse, was so proud of her daughter, Joannie. I believe that love and connection stretches beyond the physical. It can and will carry us through … whatever is in front of us.

Grief can seem crushing in moments. But in other moments, love can carry us, elevating us to new heights, allowing us to reach beyond what we could even imagine. Way to go, Joannie! You are being caressed and held up by your mom. We can even feel it.

Ruth Williams is a counselor with Alive Grief Support Services, the bereavement support program of Alive Hospice.

Some recent articles focusing on hospice, the end of life, and grief matters:

The Daily News Journal (Murfreesboro, Tennessee) published an article about coping with grief during the holidays that’s chock full of helpful information. Alive Hospice Grief Counselor Pam Quaintance was quoted in this article.

Associated Press writer Katie Nelson told of the role hospice care has played since it arrived in the United States 35 years ago. The first hospice in the U.S., Connecticut Hospice, was founded in 1974. (Did you know? Alive Hospice was founded in Nashville, Tennessee, just one year later.)

New York Times columnist Jane E. Brody wrote about the many ways hospice caregivers provide comfort to the terminally ill and the difference it has made for several patients and families.

And last but not least, a heartwarming profile of Kaukauna, Wisconsin, hospice volunteer Franny Kilgas.

Hospice care has been making headlines again. A round-up of recent news items about living at the end of life:

• The Chicago Tribune took a look at the value of conversations about end-of-life wishes and what’s being done in Chicago to encourage advance care planning. Readers including Jeanne M. Martinez wrote in to express their appreciation and to share their views on the subject.

• The Clarion-Ledger (Jackson, Mississippi) showed how hospice volunteers make a difference in the lives of terminally ill patients and their loved ones.

• The Northwest Florida Daily News wrote about a special wish that was fulfilled for a hospice patient and World War II veteran, and the Folsom Telegraph examined a California woman’s end-of-life journey and the support hospice care provides on that walk.

• From the Daily News Journal (Murfreesboro, Tennessee): One of Alive Hospice’s own patients received a very special surprise, thanks to the generosity of some Nashville-area car enthusiasts.

President Obama will discuss health-care reform tonight, Sept. 9, in a televised joint session of Congress. The address will be carried live on major television networks beginning at 8 p.m. EDT (7 p.m. CDT). It can also be viewed online.

From the White House Blog: “Tonight the President will make clear to Congress exactly what he would like to see in the health insurance reform legislation that gets sent to his desk …. [T]he President will explain how these bills should be pulled together to find the best solutions possible to bring peace of mind to Americans who have insurance and affordable coverage to those who don’t.”

For the history buffs and policy wonks out there: An interesting post about the rarety of presidential addresses in joint sessions of Congress, courtesy of USA Today’s The Oval blog about the Obama presidency.

Dr. David Tribble

It is difficult to ignore the rhetoric from both sides of the political aisle regarding end of life care. It occurs to me that many on both sides have it wrong. Many who support providing for end-of-life counseling propose it on a cost-saving basis. Many who oppose such a provision accuse the group above of euthanizing the elderly as a cost-saving measure. The underlying issue, that gets unfortunately little press, is the desperate clining to the fantasy that all treatment is better than no treatment, and that the alternative to “fighting to the end” is giving up and agreeing to die before your time.

There is ample evidence that ongoing use of heroic technology is not necessarily associated with better survival. In the United States, we do more intensive care medicine in a month than the rest of the world does in a year, and yet we survive no longer or no better. A study in the Journal of Pain and Symptom Management in 2007 showed that, for 5 cancers and for congestive heart failure, hospice patients actually lived longer than those who pursued “usual care”. A study that Ellen Goldman (columnist for the Boston Globe) recently cited in an editorial, released by the Dana Farber Cancer Institute last year, showed survival in patients who have end-of-life conversations and plan for their deaths is no shorter than those who choose to “fight.” Those who continue to “fight” generally do have more expensive care and a greater symptom burden, but they do not live any longer. Numerous studies have shown that hospice care does not lead to earlier death.

In the end, this is less about cost than it is about an honest assessment of what works and what doesn’t. There are certainly gray zones. How effective is effective enough: 20% success, 10% success? But there are therapies that we know just don’t ever work. There are also therapies that might work but carry a huge burden of suffering for a very small gain. Physicians have been (and many still are) reluctant to quote statistics for fear of taking away a patient’s hope, but patients, when asked, generally say they would rather know the truth.

In the final analysis, the best outcome, in my opinion, occurs when an informed patient makes the best decision he or she can in the light of good information. For those who cannot decide for themselves, the ones who decide for them should be able to make the best decisions they can based on good information. That, however, is a two-way street. Not only must the providers of health care be willing to impart that infomation, the patient or her/his representative must insist on getting that information. The basic information lies in the answer to a few clear-cut questions:

Can I be cured of this problem?

If I can:

1. What will the treatment be like?
2. What is the likelihood that I will be cured? 
3. What side effects may it have?
4. What will I be like after the cure?

If I cannot:

1. How long am I likely to live if I take treatment?
2. How long am I likely to live if I decline to be treated?
3. In each of those cases, what will my survival be like?
4. What effects will the treatment have on me?

One person might look at chronic pain from nerve damage as a reasonable price for survival, while another may not. It is fair to ask if the cure of a lymphoma was worth dying a few years later of heart failure from the damage the chemotherapy did to the patient’s heart. Is chemotherapy worth it if it has a 10% chance of extending a patient’s life another 3 weeks, all of which is spent vomiting? The answer for each of these will vary patient to patient, but the questions have to be asked.

If we can get patients to ask these questions and physicians to answer them as plainly as possible, then we don’t need a federal health plan to get involved. The patient’s goals continue to be paramount and the decision remains where it belongs.

Dr. David Tribble is Alive Hospice’s chief medical officer.

Hospice has been making headlines again. A round-up of recent news items about end-of-life care:

• Forbes examines proposals surrounding end-of-life care in the House’s version of “America’s Affordable Health Choices” legislation.

• CNN has a story about the benefits of doctors and patients having “the talk” about end-of-life care in terms of the patients’ quality of life and the savings to our health care system.

• What hospice can do for patients, families, and the economy.

• From the Dallas Voice: how hospice care changed the course of a Dallas man’s life.

• From the Pittsburgh Tribune-Review: a hospice advocate’s letter to the editor about the danger of cutting Medicare reimbursements to hospices.

A transcript of Wednesday’s ABC News special about health care reform, “Questions for the President: Prescription for America,” is available online. Most of the discussion on care at the end of life can be found on pages 2 and 3.

Dr. David Tribble

I read with interest a recently posted interview with President Obama on the subject of the peculiar American approach to the end of life, which is more a violent struggle against death. He recounted a situation with his grandmother in which she was suffering from a terminal illness and then broke her hip, raising questions about the propriety of repairing a hip in a terminally ill patient, at the individual and at the societal level. It posed the conflict between the personal result of pain and immobility if the hip were not repaired and the societal cost of hip repair in patients who might not live long enough to justify the intervention, however that might be measured.

I was struck by the assumption that the conflict will always be framed in terms of personal benefit vs. the cost to society. That assumption is simply not accurate. We have well-done studies that show the failure of CPR in end-stage disease; the inability of TPN (total parenteral nutrition, or intravenous feeding) to prolong survival in end-stage cancer; and the futility of 3rd and 4th line chemotherapies in most cancers. Yet we continue to provide these treatments as if failing to provide them somehow short-changes the patient. These therapies do not provide the clear-cut benefit that repairing a broken hip provides, and, in fact, it can be argued that they provide no benefit at all.

I propose, then, that the discussion should start not with the struggle between immediate benefit to the patient and long-term benefit to society, but with absurdity of spending resources that are rapidly diminishing on therapies which we know are ineffective (but which we employ simply because we cannot stand not to). We don’t have to start with challenging therapies that offer a 20% or 30% chance of benefit. We should start with challenging the ones that offer 0% chance of benefit. That, alone, would save hundreds of millions of dollars.

Most hospice physicians I know wouldn’t hesitate for a second to repair the hip, unless the patient were unlikely to survive the surgery. We draw the line at treatments which impose burden without benefit, which is a rational viewpoint for all of medical practice.

Dr. David Tribble is Alive Hospice’s chief medical officer.