Category Archives: Hospice blog

Don’t Wait—Do It Now (Or Soon)


Among the biggest misconceptions about hospice care is the belief that hospice is only for the final few days of a person’s life. At Hope Hospice, we continually work to inform the community that a patient and the patient’s family can get much more from hospice care if the call is made to hospice before those last few days.

It’s easy to understand why some people think about hospice this way. We frequently see or hear news about a famous person who is receiving hospice care. In many cases, we then read just a day or two after that first mention of hospice that the person has died. This tends to reinforce the idea that hospice is only for those who are just days away from death.

A person is eligible for hospice care when it has been determined that he or she has a life expectancy of six months or less. If a patient lives beyond the initial six months enrollment period, he or she can be recertified for another six months of hospice care. With many terminal conditions, estimating the amount of time a patient has remaining is often imprecise.

To receive the full benefit of all the services Hope Hospice and other hospice agencies have to offer, contact should be made as soon as possible when a diagnosis indicates a need for hospice care. This allows the hospice team to tend to a patient’s emotional, spiritual and social needs, as well as provide the services our nurses and home health aides provide.

At Hope Hospice we often are told by surviving family members, “We wish we had called you sooner.” While hospice care is always available help manage pain during a patient’s final days, that’s certainly not the only thing that hospice care is good for.

To learn more about hospice care in metro St. Louis, call Hope Hospice at 314-984-9800.

(photo credit:, sparkle glowplug via,

Making The Hospice Decision

We all want control in our lives. Even those of us who have given up control of certain aspects of our lives still want to control many other parts of our existence.

We may depend on other family members and doctors for guidance about major life and health decisions, but, ultimately, most of us want to make the big choices for ourselves.

The decision to enroll in hospice care is, for many, not an easy choice to make. Often there are many good reasons to go on hospice, which must be weighed against reasons not to begin hospice care.

The key element of hospice care is the patient’s physical comfort. Emotional and spiritual support for the patient and family members are important components. Even though hospice provides those important services, a patient may not be quite ready to make the transition to hospice care.

As we make the big decisions in our lives, it is important to have as much information as possible. We talk to friends and neighbors who may have had a loved one on hospice care. We reach out to clergy who may have observed hospice care for church members.

It is also important to talk to a hospice representative. He or she can answer your specific questions. Not all hospices provide the same level of service. Not all hospices are as responsive to special needs as others. Not all hospices are easy to reach on nights and weekends.

If you are a patient who wants to know more about hospice (or you are a close family member), call us at Hope Hospice at 314-984-9800. We can connect you to someone who may be able to answer questions by phone. In some cases, it may be best for a Hope Hospice representative to meet with you in person.

As you control your personal destiny, good information will help you make the best choices for you and your life.

Hope Hospice serves patients and families in St. Louis city and county and in Jefferson, St. Charles and Franklin counties.





Hospice Care: No Limits

Recent statistics gathered by the National Hospice and Palliative Care Organization (NHPCO) state that 1.65 million Americans are cared for by hospice organizations each year. The number continues to grow. Why? Because hospice provides the care Americans have said they want.

A Gallup poll has determined that 88% of Americans would prefer to die at home, free of pain, surrounded by loved ones. This is what hospice care makes possible. As a whole, our nation’s hospices appear to be doing a good job. 94% of Americans who’ve had family members in hospice rate the care received as good to excellent, according to NHPCO research.

One of the key messages that hospices nationwide are communicating to the public deals with the six-month time period. The major qualification for hospice care is a prognosis indicating that a patient has six months or less to live. But there is not a six-month limit on hospice service.

A patient may receive hospice care for as long as necessary when a physician certifies that he or she meets eligibility requirements.

Under the Medicare Hospice Benefit, two 90-day periods (six months) are followed by an unlimited number of 60-day periods.

Because there is the six-month prognosis requirement AND the initial enrollment period for hospice is also six months, there are misunderstandings. Some patients and family members may fear that if the patient does not die within the six-month period, the patient will be dismissed from hospice. But that is not the case.

Hospice patients do not have to worry about “using up” their hospice benefit.

Even though hospice care is becoming more popular in America and familiar to more Americans, the education process regarding hospice care is an ongoing effort. If there is an aspect of hospice care that is not quite clear to you and your family members, call us at Hope Hospice at 314-984-9800.

Hope Hospice provides hospice care to residents of St. Louis city and county, Jefferson county, St. Charles county and Franklin county.







Dying a “Good Death”

In many cases it comes down to the choice between quantity and quality: Do I want more days of life or do I want better days of life? For patients with a terminal diagnosis, this is often the question one must answer.

For family members, it may be unthinkable for mom or dad (or husband or wife) to stop receiving treatment that would keep them alive for a few months longer. But when treatment results in significant discomfort for the patient or when treatment is less and less effective in keeping a terminal condition at bay, the patient may choose to end aggressive treatment.

Two recent articles provide good insight into decisions made by patients to make the most of remaining time instead of pursuing medical treatment or procedures that might extend life, but might also make life less worthwhile.

Katy Butler wrote about her mother’s death in Saturday’s (September 7, 2013) Wall Street Journal. The article is adapted from Ms. Butler’s new book titled Knocking on Heaven’s Door: The Path to a Better Way of Death. The article (which may be accessed by clicking HERE) points out that her mother “slept in her own bed until the night before she died. She was lucid and conscious to the end.”

Ms. Butler mentions in the article that research in California shows that “70% of state residents want to die at home.” She continues in her writing, “National polls have registered even higher proportions. But, in fact, nationally, less than a quarter of us do [die at home].”

Another article, published in June in the Indy Week newspaper in Durham, North Carolina, tells the story of a woman who chose quality over quantity. Regarding attitude changes toward death, Barry Yeoman writes, “Those who wanted to use feeding tubes or intensive chemotherapy still could. But patients could also opt out, and instead devote their last months to visiting with loved ones, pursuing enjoyable activities and tying up spiritual and material loose ends.”

In his article (which can be accessed by clicking HERE), Mr. Yeoman states, “acceptance [of death], when it happens, allows families to find meaning, and sometimes even sweetness, in a loss. It turns out that’s what many terminally ill people want.” His story of Sue Otterbourg’s final months may provide guidance to you and your family.

If a family member is dealing with a life-threatening illness, please call Hope Hospice at 314-984-9800. In our work with patients, our primary goal is patient comfort. We would be happy to talk to your and your family about the many elements of the care we provide to patients throughout metro St. Louis.

The Hope Hospice Team at the Alzheimer’s Walk

On Saturday, August 31, the Hope Hospice team arrived early in downtown St. Louis to honor and support the participants in the Walk to End Alzheimer’s.


Hope Hospice community liaison Sarah Bilbrey designed and, with a huge assist from her father Curt, made the Memory Wall for walkers to sign. When the six sections of the wall were erected, it made an impressive sight.


The Hope team of staff members and volunteers iced down hundreds of bottles of water to hand out on this hot morning. Several hundred pounds of ice were ground into sno-cone ice. Bottles filled with syrup to flavor the sno-cones were set up.


The team was ready. A DJ played music that echoed around the intersection of 18th and Olive, near the White Knight diner. Barricades blocked the street of vehicular traffic. The Hope Hospice staging area was at the approximate halfway mark of the walk, which was to begin and end at Busch Stadium.

The first walkers were expected to arrive around 9:20. But by 9:40, not one walker was to be seen. Had walk officials told people to opt for the shorter one-mile walk because of the heat? Had walkers chosen not to walk because of the heat? No, they just got a late start due to remarks before the walk began.


Within a few minutes, here they came! An initial trickle, followed by a bigger group, then finally a large crush of walkers. They were happy to see the Hope team handing out bottled water. Walkers of all ages went for the sno-cones.



Most gratifying though, was the number of walkers who took a moment to sign the Memory Wall and share their thoughts about their family members and friends who have suffered from Alzheimer’s Disease. When Hope Hospice team members read some of the sentiments left behind, they were moved to tears.

Wall signers


We at Hope Hospice thank the Alzheimer’s Association for the opportunity to participate. We also thank all those who walked and especially those who signed the Memory Wall.

Hope team

For information about Hope Hospice, please call 314-984-9800. Or visit

Call Hospice Sooner Rather Than Later

Studies and surveys have shown over and over again that the earlier a patient goes on hospice, the greater the benefits to the patient and caregivers. But many patients still come to hospice too late to receive the full spectrum of hospice services.

Why do patients and caregivers wait too long? In a 2005 survey of families of recently deceased hospice patients, those who felt that their family member had been admitted to hospice too late said the most common barrier was a doctor. Reasons included inaccurate prognoses, disagreements by doctors with hospice philosophies and desires by doctors to pursue further treatment.

Survivors who felt their family member went on hospice care too late were, overall, less satisfied with hospice. Conversely, those who felt their family member became a hospice patient at “about the right time,” are more satisfied.

Of course, in other cases, it is the patient or the family member who may have refused to accept the doctor’s assessment that a condition is terminal.

At Hope Hospice, we admit patients at all stages of end-of-life. Occasionally, a patient dies within just a few days of becoming a Hope patient. We certainly do our best to provide quality service to each patient no matter the circumstance.

But experience has taught us that patients who are on hospice for several weeks or several months develop good relationships with our nurses, home health aides and other professionals. There is trust and good will. We are better able to serve the patient (and the family) when a patient has more time as a Hope Hospice patient.

One of our goals at Hope Hospice is to convince physicians that hospice care is the right thing for their terminal patients whose life expectancy is six months or less. To those in the St. Louis medical community, we encourage you to learn more about hospice and the good things that hospices are doing for patients and families.

If you are a patient or a family member facing a decision about hospice, don’t wait until it’s too late. If you have questions, call us at 314-984-9800.

Getting Doctors to Talk About Hospice

Doctors and other medical personnel need to know about hospice. Doctors who treat patients for conditions that can lead to death should, for the sake of their patients, become familiar with the concept of hospice. Physicians must consider the needs of each patient and be prepared to share information about hospice care in a timely manner.

A report published by University of Nebraska in 2003 states “at least one-quarter of physicians do not discuss hospice options with their terminally ill patients.” This statistic is surprising and baffling. As hospice care becomes more popular among Americans and hospice information becomes more readily available, we must hope that more doctors will talk to terminally ill patients and their families about hospice.

The report also says the timing of the hospice discussion seems to be the single most influential factor in utilization.” It continues: “families who were provided hospice information before and during their relative’s terminal illness were seven times more likely to consider hospice than those families who knew of hospice before the illness but did not receive further information during the illness.”

The message is clear. Doctors should not be afraid to talk about hospice. Hospices need to step up our outreach to the medical community. Patients and families should not pre-empt conversations about hospice.

In fact, patients and family members need to be pro-active so that all avenues of care are explored. Feel free to ask your doctor about hospice at any point during treatment. You may also want to ask friends, your minister and other medical personnel for information and thoughts about hospice.

Another conclusion from the University of Nebraska report is this one: “The majority of hospice family survivors reported that they would have welcomed more information about hospice from their physicians at the time the diagnosis was labeled terminal.”

At Hope Hospice (based in metro St. Louis), we are always ready to answer your questions about hospice care. We are eager to share information about Hope Hospice with patients, family members and doctors. Call us for information at 314-984-9800. Please visit our website:

Hospice Is Not (Usually) A Place

A question we are sometimes asked is: How big is your facility? How many rooms/beds do you have?

Our “facility” in St. Louis County is in an office complex. We have offices, storage areas, a classroom, meeting areas and a kitchen/break area. But we do not have patient rooms or beds here. Our patients receive hospice care in their homes or in nursing homes (or assisted living facilities).

There are in-patient hospice facilities, but most St. Louis area hospice patients are in private homes or care facilities.

Why do so many people think of a hospice as a place? For centuries, hospices were places where the terminally ill came to die. The modern hospice movement, featuring care primarily in one’s home, is barely a half-century old. Many of the patients we’ve served at Hope Hospice were never told about hospice when they were growing up. And, if they did hear a little bit here and there about hospice, the information was sketchy at best.

Hospice patients who are in their homes receive routine daily care from family members. Hospice nurses and home health aides provide specialized care to patients. Hospice staff also provides support to those family members, in the form of training.

The beauty of hospice care is that family members are not isolated from a dying patient. Instead of seeing mom or dad in a hospital room, lying in bed, hooked up to a variety of monitors, family members see their loved one at home in a favorite comfortable chair.

The idea that hospice is a place is one of the many misconceptions that exist regarding hospice care. At Hope Hospice, we address misconceptions everyday, as we tell the story of hospice to new patients and family members.

For information about hospice care, call us at Hope Hospice at 314-984-9800. Hope Hospice serves patients and families in St. Louis city and county and in Jefferson, St. Charles and Franklin counties.

Dying On Schedule? No One Can Predict Exactly

To qualify for hospice care, a patient must have a life expectancy of six months or less. But the exact date of death is impossible to predict.

When a doctor tells a patient that he may live for another month or maybe another six months, the doctor is saying, “Your condition is terminal, but I don’t know exactly how long you have.” When a patient is given a terminal diagnosis, an oncologist (or other specialist) may not be fully aware of other factors that can move a patient closer to or farther from death.

Is there a history of smoking, excessive drinking, drug use, diabetes, pneumonia, mental illness, obesity or other conditions? The answers can help a doctor offer a more accurate educated guess regarding the remaining time for the patient, but there can be no precise determination. Even patients on death’s doorstep, for whom bedside death watches are undertaken by family, often live for several days or even weeks before passing.

Can a patient go on hospice too early? Yes. When a patient is on hospice care and does not pass away within six months, the patient must be recertified. If the patient is found to have improved and, if the determination is made that death is no longer expected in six months, the patient goes off the hospice patient roster. But, if the patient’s reevaluation reveals that she or he still has a life expectancy of six months or less, the patient can continue to receive hospice care.

Can a patient go on hospice too late? Yes. Patients and families often have the incorrect idea that hospice care is only for the final days of life. In many situations, the patient or family does not completely understand the full scope of hospice care. This is why we constantly work to tell people the hospice story.

We have witnessed patients whose time with us exceeded expectations. We have also had patients who passed suddenly, much quicker than anticipated. The “six months or less” life expectancy is an estimate. No one can predict exactly.

(For information about hospice care, call Hope Hospice at 314-984-9800.)


Compassion and, Yes, Love Are Vital Parts of Hospice Care

Every hospice care agency gets them and values them. We certainly receive our share here at Hope Hospice. We get letters—from family members and other survivors—offering thanks and gratitude for the care and concern provided by hospice team members.

A theme that runs through most of these letters is an appreciation for the level of personal concern shown by hospice nurses and home health aides. Also mentioned in the letters are other staffers, including chaplains, social workers, massage therapists and volunteers. The words “compassion,” “kindness,” “support” and, yes, “love” show up frequently in such letters.

The letters we receive at Hope Hospice demonstrate that the personal experience of having a family member or other loved one on hospice is often different from what had been anticipated.

A cross-section of these comments reveals many mentions of service that exceeded expectations. As more people learn what hospice is and become somewhat familiar with hospice care, there are preconceived notions of how things will proceed when a loved one is on hospice care. We are happy that many who write letters are pleasantly surprised the many elements of hospice care they were unaware of.

The letters often mention the knowledge and expertise of our team members. They also mention the attention paid to family members and other loved one after the patient’s death.

Of course, like anyone, we enjoy hearing from those who have found our services were more than satisfactory. We especially appreciate when family members acknowledge the compassion and love shown by specific individuals on our staff.

Because hospice care is a unique form of medical service, the opportunity to connect with patients, family members and other caregivers on personal basis is one that we don’t take lightly. To all who have taken the time to write us about your experience with Hope Hospice, we thank you.