Jan Jones

November is National Hospice Month and there couldn’t be a better time than now to celebrate the work of so many dedicated individuals involved in the hospice movement and providing hospice care. 

We are in the midst of attempting to figure out how best to finance health care in this country at a time when our economy is incredibly challenged. We know that hospice care could be a bright light in this debate because it is the right kind of care for people at the end of their lives and it is delivered efficiently and compassionately without waste of resources. Yet little is being said about shoring up the delivery of this important service. 

Just a few short years ago hospice care was little more than “budget dust” on the books of Medicare expenditures. Because of the care we provide and the incredible outreach that has occurred over the past decade, hospice care no longer fits into that category. So, as Dr. Tribble stated, our head pops up in the Whack-A-Mole game being played in Congress. There are no easy answers to this debate over how to “fix” health care in the U.S., but I know for certain that hospice care is a solution, not a problem. 

During Hospice Month, which is being celebrated throughout the nation, there is not a better time to make this fact known to our legislators. Won’t you join us in making this known?

Speaking of the right kind of care at the right time, we recently were graced with a visit from Melissa Gilbert of Little House on the Prairie fame, who is passionate about the delivery of hospice and palliative care to children. During her visit she had the opportunity to visit with two of the families for whom Alive Hospice has provided care. She was thrilled to see how these families have been helped by the support of hospice and palliative care and continues to wonder why this care is so inadequately financed. 

Melissa Gilbert (left), who starred in ‘Little House on the Prairie’    as Laura Ingalls, is pictured holding 8-month-old Alive Hospice    patient Jordyn Luker. Jordyn’s mother, Tiffaney, is seated next    to them.

There are many barriers to delivering hospice and palliative care to children including that of financing of that care. We are grateful for community support which allows us to provide such care (including a recent grant from The Memorial Foundation). But Congress needs to do more to remove barriers and allow this much needed care to be financed appropriately.

It is critical to care for those most vulnerable in our population who may be unable to speak for themselves. Melissa is a spokesperson in this regard and never misses an opportunity to advocate for this much-needed care. We were blessed to share a few bright moments with her. She exudes a warmth and love that the children respond to beautifully. What a gift to observe this firsthand.

Jan Jones is president and CEO of Alive Hospice.

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.

The National Hospice and Palliative Care Organization reports that hospice advocates made more than 9,000 contacts with congressional offices by phone or e-mail during its July 15 Virtual Lobby Day. Hospice advocates across the nation came together in one voice to urge Congress to protect hospice care and not to let cuts in Medicare funding take effect.

For anyone who was unable to participate or reach your congressional representatives on July 15, it’s not too late to take part! Click here to find out how you can speak up for hospice care.

Also, you may sign up to receive Action Alerts from the NHPCO to stay informed of when your involvement can make a difference.

Jan Jones

Efforts continue to express our concerns for cuts to the Hospice Medicare Benefit scheduled to occur on October 1st. Despite the research which proves our value to those receiving our care and the savings to the system as a whole, we seem to be overshadowed by the Federal budget crisis (even though we know we are part of the solution) and the anxiety over health care reform generally.

Reform conversation continues and, although the public is being encouraged to provide input, little is known about how the “package” is being designed, other than it will cost us about $3 trillion. YIKES.  Health care providers are being challenged to come up with that $3 trillion.

My biggest fear is that hospices will be expected to give up even more, which has the potential to decrease access to the best part of our health care system to begin with. Hospice is the solution to the health care crisis, but won’t be available if it’s cut to the bone and unable to be sustained.

Did you know that the average net income for hospices is 3%? That is not even enough of a margin to sustain capital needs and put a little away for a rainy day. Aren’t we encouraged to save 10% of our incomes? How can hospices sustain the level of cuts that are being proposed now, let alone what may occur in paying for health care reform? 

Right now, the opportunity exists to let the President know how you feel. He really does care about this issue. Call the White House and let them know that hospice reimbursements should not be cut! Or write a letter to the President, or your congressman, or your local newspaper and let them know how much hospice care means to you.

This is one of the few benefits that has the potential to be utilized by everyone. This is the one benefit focusing on improving one’s life for whatever time remains, and by the very nature of our human existence at some point we will all leave this world. Please help us ensure that the hospice benefit survives for us, our loved ones, and those coming behind us.

Jan Jones is president and CEO of Alive Hospice.

President Obama and some of his advisors will host an online town hall meeting on health care reform on Wednesday, July 1 beginning at 1:15 p.m. EST. Don’t miss your opportunity to ask the President about end-of-life care!

How you can take part:

• Twitter: Ask questions using the #WHHCQ hashtag
• Facebook: Post a question on the White House Facebook page
• YouTube: Upload a 20-30 second video question to the YouTube White House channel

In a video announcing the online town hall meeting, President Obama stated that health care reform is an issue “that can affect every family and every community across the nation.” The same is true of hospice care. Don’t miss your chance to give hospice a voice!

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.