What to look for when choosing hospice care

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This is the fifth article in a five-part series that explores the experiences of patients and families who have used hospice services.

Hospice services are intended for people who are believed to be in their last six months of life. Hospice is based on the concept that "each of us has the right to die pain-free and with dignity," according to the National Hospice and Palliative Care Organization.

In hospice, generally people don't receive treatments intended to cure a disease. For example, people with very severe cancer that had spread throughout their bodies wouldn't continue chemotherapy in hospice. In most cases, they would live at home, without all of the tubes running in and out of their bodies, disruptions, and electronic monitoring they would get in a hospital.

Sonia Clarke, a nurse in Prescott, AZ, who has spent nearly half of her 36-year career specializing in hospice, points out, "The philosophy is to neither purposely prolong life or hasten death. We seek to elevate the person's comfort level and, hence, the quality of life," which usually allows them the time "to 'put their things in order' like saying 'I love you,' 'Forgive me,' 'Thank you,' 'I forgive you,' and 'Goodbye,' one more time or more."

While many people find hospice to be akin to a miracle - and stories in this series have described some of their experiences - some people have run into appalling problems.

For example, one reader reported that her mother's doctor "demanded that she go on to hospice because she was not eating right and that is when the nightmare started." Jasmine's mother Alexa was taking prescription drugs that had a side effect of loss of appetite, but her doctor seemed to view her failure to eat as proof that she was ready to die.

Completely unprepared for the idea of hospice, Jasmine and Alexa were shocked when hospice workers said, "We are here to help you die, not to heal you." Alexa did not believe that she was approaching death, and felt betrayed by her doctor.

Jasmine felt that her mother was railroaded into dying.

Another reader wrote that her mother lived for two years while receiving hospice care. It is surprisingly hard for doctors to predict how long people will live. Doctors and other hospice staff regularly review patients' status, and may repeatedly conclude that they are likely to die within the next six months. With the six-month horizon repeatedly re-set, people may stay in hospice care for much longer than six months.

Such extended stays in hospice aren't common, but they do happen. Looking back, family members might conclude that people who spent two years in hospice didn't belong there in the first place, and that a little more medical treatment might actually have allowed them to live well for even longer.

Since hospice usually offers great help but can sometimes result in very disturbing problems, how do you decide when hospice makes sense? How do you choose a hospice provider?

The following steps describe decisions you might make for yourself. If you are responsible for the care of other people, the process is similar.

First, think and talk about what you want the end of your life to look like, and put your wishes in writing. Previous columns described how to write advance directives.

Second, have honest conversations with your doctors if you are told that you have a very serious illness or injury. Is it likely to end your life within the next year or two?

Third, watch as time passes and decide when the downsides of treatment exceed the expected benefits. For example, if you have an untreatable condition -- say, an inoperable brain tumor that impairs more of your body's functions with each passing week - do you decide at some point that subjecting your body to aggressive medical treatment is a waste of the precious time you have left?

Fourth, understand clearly what it means to choose hospice: that the focus will be not on trying to cure you but on helping you to live the time that you have left with as little pain and with as much dignity as possible. Electing hospice care should be a choice - not something forced upon you. Also know that you can opt out of hospice at any point, even after receiving hospice services for a while.

Fifth, locate hospice providers in your area. You can search for hospice providers by location (among other characteristics) at www.caringinfo.org, a site run by The National Hospice and Palliative Care Organization. Choose "Find a Hospice."

Clarke, the hospice nurse, suggested asking for recommendations from your doctors. You might also ask friends and family members who have had relatives in hospice.

The sixth step is to ask questions of several hospice providers so that you can compare the answers and choose the provider that best fits your needs and preferences. Clarke noted, "With planning, all facilities will provide a tour and answer all questions" to help you make a choice.

Examples of questions are:

• Will my insurance cover your services?

• Once a decision is made to start hospice services, how long does it take to enroll?

• If I start out in hospice at home but I need more care than it is possible to get there, do you have a site that I can move into?

• Where is it (and how far away from my friends and family)?

• If I need to start hospice services during off hours - for example, on a Saturday night - can you do that?

• If I need emergency attention during off hours - for example, 2 a.m. - can someone come right away?

• What help can you offer my family while I'm in hospice and afterwards?

• What other services do you offer?

To find more questions, go to www.caringinfo.org/files/public/brochures/Choosing_Hospice.pdf.

With some advance planning, you can make choices that increase the odds that your death or the death of a loved one will be as dignified and peaceful as possible. As Clarke concluded, "Whose life is it anyway? Respecting the patient and family wishes is on the top of the priority list" in hospice.

Elizabeth L. Bewley is president and CEO of Pario Health Institute and the author of "Killer Cure: Why Health Care Is the Second Leading Cause of Death in America and How To Ensure That It's Not Yours." To tell Elizabeth your story or to ask her a question, write to thegoodpatient@pario health.net.

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Elizabeth L. Bewley