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Oncology NEWS Today Blog.
 

Hospice Dropouts Risk Crushing Personal and Financial Trouble

By Greg Freiherr | September 21, 2010

On average, 11% of cancer patients drop out of hospice care, according to research conducted at the Mount Sinai School of Medicine. Many of these patients are in for rough sledding.

In research scheduled to be published October 1 in the Journal of Clinical Oncology, Melissa D.A. Carlson, PhD, and colleagues at Mount Sinai found that 39.8% of hospice dropouts were admitted as hospital inpatients compared with only 1.6% of patients who remained in hospice. Nearly 33.9% of the dropouts entered the hospital through the ER compared with only about 3.1% of those who remained in hospice care until they died.

The research paints a dark picture not only for the emotional and physical well being of patients who leave hospice care, but for the U.S. healthcare system, as well. Cancer patients who quit hospice care average nearly five times higher healthcare costs than patients who remained in hospice—$6,537 compared with $30,848 in expenses—from their admission to hospice to their deaths.

The soon to be published study, which is available ahead of time online, did not examine the reasons cancer patients quit hospice. Previous research by Carlson, an assistant professor of geriatrics and palliative medicine at Mount Sinai, and colleagues, however, looked at some of the surrounding issues.

They found that dropout rates can vary widely from one hospice to another. Some are as low as a few percent. Others as high as 30%. Newer, smaller hospices tend to have the highest dropout rates.

“In some cases perhaps there is a crisis situation where these patients can't be managed because a newer or smaller hospice doesn't have the staffing, maybe on weekends, to deal with it. So the individual then is told to go to the hospital, ends up in the emergency department, and is admitted,” she said.

Carlson recommends that oncologists should connect with palliative care teams where available and try to ensure that the patient and family are supported after they leave hospice.

“Oncologists might be still be involved in the care of these patients and they can help in this consultation—to clarify what the goals are and what the patient and family's preferences are for care,” she said.

The Mount Sinai study results were based on data from 90,826 cancer patients who had enrolled in 1,384 hospices between 1998 and 2002. The cases were included in the Surveillance, Epidemiology, and End Results (SEER)–Medicare database.

Many of the 11% who disenrolled had conditions that typically fit hospice care, leading the researchers to wonder why. Carlson recommends conducting patient and caregiver interviews to help understand the reasons.

The Mount Sinai researchers may not know why patients leave hospice, but Carlson feels certain that they should stay. Rather than looking for ways to cut Medicare expenditures by restricting access to the Medicare Hospice Benefit, policymakers should focus on keeping patients enrolled, she said. Doing so could reduce overall costs while improving patient welfare.

“We know that hospice saves money and we know that there are benefits to patients and family. If they disenroll, we know that they use healthcare at a very high rate,” she said. “So rather than talking about trying to reduce Medicare hospice benefit expenditures, we should try to support (these patients) to try to get them to stay with hospice until they die.”

 

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by Peter Jensen | October 12, 2010 1:34 AM EDT

Anecdotes about poor care in some of these comments regarding their experiences with "hospice"should not deter anyone reading these comments from looking into the hospice option. They sound more like criticisms of inadequate care in nursing homes than a true hospice facility staffed with specialists, and in the best cases, built from the ground up as a hospice. There are truly wonderful, caring, absolutely professional hospice facilities that make the end-of-life  experience so much more bearable than in a hospital--both in terms of physical and emotional comfort for the patient and his/her family, as well as advanced palliative measures for pain relief and other daunting issues that hospitals tend to treat with a "sledge hammer" style rather than the more nuanced approaches of a top-flight hospice. Begin your reasearch, perhaps, with a call or web-visit to the Institute for Palliative Medicine in San Diego, located at San Diego Hospice, which trains hospice staff who will work at hospices throughout the country. A human being can pass with as much comfort and dignity as is humanly possible, even in some of the worst-case cancer scenarios. I know. I've been there with a loved one. Like anything else, you need to do your homework and find the hospice and people that you feel most comfortable with. Peace is possible.
Peter Jensen, Del Mar, California

by Holly Carlson | October 11, 2010 8:55 AM EDT

I am so sorry to read these awful stories, none of which have been my experience. Thankfully. I have worked in a wonderful hospice inpatient setting as a nurse, and no patient was ever denied anything. If they left hospice to take treatment that "disqualified" them for hospice, it was not for reasons other than regulations governing hospice. And I never witnessed any patients' deaths hastened by the actions of hospice care.Where I worked, it was 100% about comfort, whether that meant analgesics, water, food, spiritual support, family support, whatever. When my time comes, I will confidently place myself in this facility's care.

by elaine tramposch | October 08, 2010 12:29 PM EDT

As a nurse and a grieving daughter whose mother was pushed out, no euthanized, prior to her time, the public is becoming more suspicious of anything done in the name of palliative care when it is not what the patient/ family wanted. It is one thing to sign a DNR, but another to have a Fentanyl or Morphine drip started  and food/fluids withheld, and literally make the patient die of dehydration. And with the elderly, there is no recourse against the provider. My mom was 86 and she was too weak to drink (hte docs first put her into congestive heart failure) and then gave her soo much diuretics that she went into renal failure....she kept telling them that she was very thirsty but they would not start an IV until I screamed at them and took it upon myself to bring in her cardiologist who ordered it...but it was too late. This disaster was partly due to the fact that hospitalists who did not know her and did not care about her, were in charge. Her internist had no say in her care. An we the public are being victimized.

by Dave Gerard | October 08, 2010 11:34 AM EDT

Are there hospices out there that (1) believe in the sanctity of life; (2) are compassionate; (3) don't starve patients to death; and, (4) provide some spiritual solice?  I am looking at having to face this decision personally - possibly over the next months - and these articles and comments are ghoulish and frightening. 

by Brian McCarthy | October 08, 2010 10:54 AM EDT

My aunt landed in a hospice at 59 after returning to smoking and being kicked out of a clinical trial for non-compliance. I do not believe she had medicare and was shuttled out of the hospital to one care center who pushed her off on a hospice. They denied her food and told us her organs could not stand it. When we showed up, she was making a finger to mouth sign for food but we stupidly went along with the Hospice plan to kill her. When I finally did give her some soy milk, it was obviously a relieve to her but she had deteriorated so that she was unable to communicate. I would never recommend that someone enter a hospice with no insurance. Her treatment was cruel beyond belief. It is no wonder people flee when it is obvious someone wants you dead.

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