Category Archives: misconceptions about hospice

Sarah’s Interview with KEZK

Greg at the mike

Our community liaison Sarah Bilbrey was interviewed this week by Greg Hewitt, morning host at KEZK (102.5FM) in St. Louis. To listen to their conversation about National Hospice Month and hospice care in St. Louis, please click on the link below.

Don’t Wait—Do It Now (Or Soon)

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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: https://www.flickr.com/photos/sparkleglowplug/118142600/, sparkle glowplug via http://photopin.com, http://creativecommons.org/licenses/by-nc/2.0/)

November—Time To Learn About Hospice

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November is National Hospice and Palliative Care Month, a time to call attention to hospice care in America and the people and organizations that provide that care. Hospice education is an ongoing effort. We at Hope Hospice take every opportunity we can to reach out to the St. Louis community and explain what hospice is and what it is not.

It is encouraging that information and knowledge about hospice is growing. More people have had a relative or friend on hospice care. We find, though, that as more people learn about hospice, misconceptions continue to exist.

Among the biggest misconceptions:

Hospice is a place. While in-patient hospice facilities do exist, almost all hospice care in the U.S. is administered in private homes and in care centers (nursing homes and assisted living facilities).

Hospice is only for the very last days of life. When a determination is made that a person has a life expectancy of 6 months or less, a patient can become eligible for hospice care. Because prognoses can be imprecise, many patients stay on hospice care for more than 6 month.

Hospice care is expensive. Hospice care is a fully-covered Medicare benefit.

Hospice is only for cancer patients. Many hospice patients ARE cancer patients. But other patients have conditions ranging from Alzheimer’s to congestive heart failure to kidney failure.

If a patient lives beyond the initial 6-month period, he or she will be dropped from hospice care. After 6-months, a patient must be recertified. If life expectancy is still 6 months or less, hospice care can continue.

A patient can only receive hospice care from a hospice that he or she is referred to. Families and patients may prefer another hospice, based on recommendations from friends, family and neighbors. There are significant differences among hospices.

The only reason to go on hospice is to get pain medication. A major goal of hospice care is to assure a patient’s comfort. But hospice care is a complete team program that includes spiritual and emotional components. It’s not just about the meds.

Again, the sentences above in bold face are misconceptions. During this month, we encourage you to take time to learn more about hospice care.

In metro St. Louis, call us at Hope Hospice for questions and concerns about hospice care. Reach us at 314-984-9800.

 

Hospice Survivors

One of the great misconceptions of hospice care is that it is only for those who are just days away from dying. We at Hope Hospice work to educate the St. Louis community that hospice is for all persons who have a life expectancy of 6 months or less.

But some hospice patients live beyond the 6-month time period. Upon reevaluation, a patient may be determined to be well enough to go off of hospice care. Or a patient may be recertified to allow care to continue. Hope Hospice closely follows state and federal guidelines regarding patient eligibility.

A recent article on hospice care that ran in the Washington Post points suggests reasons why some patients outlive “a legitimate prognosis of six months.” Citing an executive at the National Hospice and Palliative Care Organization and others, the article states: “A larger portion of patients today have diseases whose outcomes are harder to predict. That’s because the portion of hospice patients suffering from cancer, a disease that has a more predictable course, has shrunk.”

An article distributed by McClatchy newspapers in 2006 shares details of a Harvard Medical School study of doctors’ diagnoses of terminally ill patients: “In 4 out of 5 cases doctors’ estimates of how long a patient would live were wide of the mark by at least a third. That is, for a patient who actually died in 30 days, 80 percent of doctors predicted 20 days or less or 40 days or more.”

One reason for the increased number of hospice survivors may be the actual care provided by hospices. The McClatchy article suggests: “With the focused attention of hospice doctors, nurses, social workers and spiritual counselors, patients get their medications adjusted and take them regularly. They get painkillers adequate to assure a night’s sleep. They eat regularly, and their loved ones get some help and relief.

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A clinical director at a hospice in Pennsylvania said, “Often, just taking away the pain and enabling them to sleep through the night gives people a second wind.”

If you have questions about hospice care and the benefits of hospice care, please call Hope Hospice at 314-984-9800.

 

 

 

 

NOT Just For A Few Days

It has happened again. Another celebrity, this time country singer Ray Price, has left a hospital to go home to spend his last few days at home with hospice care. Mr. Price passed away Monday (December 16, 2013). We offer our sympathies to his family and his many fans.

Media reporting on his end-of-life situation reinforces the belief held by many that hospice care is only for those last few days of life. This is not the first time this has occurred. Media reports often tell us that a famous person has begun hospice care and then, a day or two later, comes the report of the person’s death.

It is important to know that hospice care is available to patients with a life expectancy of six months or less. That means that many patients who are not on death’s doorstep are eligible for hospice care. And, while “six months of less” is the stated benchmark, that is an indefinite determination. Because even the best medical minds cannot pinpoint the exact day or month when a patient will die.

In some cases, patients stay on hospice care for more than six months. With certain medical conditions, a typical patient may live beyond six months of care but still be in a state that qualifies her or him for the “six months or less” diagnosis.

In Mr. Price’s case, while reports say he suffered from pancreatic cancer, we cannot know all the details of his illness that have led to his passing, nor his and his family’s desires regarding the end of his life.

For many Hope Hospice patients and their families, having weeks or months at home before death occurs is a blessing. The period allows the patient an opportunity to receive the full scope of hospice care.

If you have a loved one who may be approaching the end of his or her life, please call us at 314-984-9800 to talk to one of our community liaisons about hospice care and the many services we provide. Remember, too, that we deliver our services to patients with compassion and love.

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.

Saying NO to Hospice Care—Why?

Why do patients (and their families) sometimes choose NOT to enroll in hospice care, even after being referred to hospice by a physician? A study conducted by a team of gerontology doctors in Seattle in 2010 provides a few answers. Many of those answers reveal inaccurate perceptions about hospice. Others indicate that hospice personnel may not have presented information as well as they could have.

Some of the respondents (including survivors of patients who had died) said that the patient was “not ready.” This was because of the widely held (but incorrect) belief that hospice care is only for the final days or hours of life. Some family members were reluctant to admit that their loved one was dying. In other cases, there were disagreements between patient and primary caregiver (his or her spouse) regarding the suitability of hospice for that patient’s circumstances.

In a handful of cases, there was concern by wives that they would have to give up some of the caregiving roles for their dying husbands. They expressed thoughts that they might be falling short as wives by allowing others to provide care.

One respondent, who did eventually sign on with a hospice, initially balked because one hospice representative painted a picture of hospice care as being very restrictive but another rep described hospice as being much less restrictive. Some patients who were using oxygen were reluctant to sign on with hospice because it would have meant a change in oxygen providers. And, in a couple of cases, there was patient/caregiver confusion between hospice care and home care.

At Hope Hospice, our community liaisons are experienced professionals who take as long as necessary to explain exactly what hospice care is. We work hard to correct misconceptions. We know that hospice is unfamiliar to many of the patients and family members we meet. We recognize that choosing hospice care may not be an easy decision to make. We know that this choice comes during a stressful period for patient and caregivers.

We strive to state clearly our role in a patient’s end-of-life process. We answer any and all questions. We value the input of family members and their role in the loved one’s hospice experience. We take pride in our ability to address a patient’s specific needs. We believe strongly in the service we provide.

To speak with a Hope Hospice community liaison or other staff member about hospice care, please call us at 314-984-9800.

Hospice Freedom of Choice

An article in the Chicago Tribune last year listed several of the common misconceptions about hospice. Among them is the idea that a patient must opt for hospice care only from the hospice agency connected to (or recommended by) a doctor, hospital or nursing facility.

“While they [care providers] all may have contracts with hospice agencies and recommend their care, a patient is free to research and make their own choice,” the article states.

Why would a patient or patient’s family choose not to use a hospice recommended by the doctor? Often the doctor is an employee of a hospital group and may feel obliged to suggest his group’s own hospice (just as he might if you asked for a referral for, say, a dermatologist).

At Hope Hospice, we frequently receive calls from those who have had other family members in our care. Recommendations from friends and neighbors also lead many to call. We also get calls from people who find us on the internet and wish to compare levels of service. (By the way, we always welcome such comparisons.)

The president of the Illinois Hospice and Palliative Care Association, Rick Kasper, says in the Tribune article that families and patients should interview hospice representatives to make their choice. “It is very important,” he says. “You have people that sometimes just don’t connect.” In the article, he mentions that families should ask about additional services such as massage therapy.

If you or a loved one are currently considering hospice care or if hospice care is a possibility at some point in the near future, feel free to call us at Hope Hospice. We may be able to answer many of your questions by phone, and are always willing and available to meet with you in person. You may call our office at 314-984-9800.

Remember, you do have a choice when it comes to hospice care.

Over One-Third of Dying Americans Utilize Hospice

The statistic in the headline above is one of those “good news/bad news” numbers.

It is good news because it reveals that hospice use in the US is growing. The number of patients on hospice continues to increase annually, as more people learn about hospice and its many positive qualities.

But that number is also bad news because it tells us that almost two-thirds of those who die each year in America do not use hospice. We believe that a large number of the individuals within that two-thirds who do not choose hospice would benefit from the services that we at Hope Hospice and other hospice agencies deliver.

Why do dying patients—ones who would qualify for hospice care—choose not to utilize hospice? In most cases it is because of the many misconceptions about what hospice is and what it does. Patients (and family members and other caregivers) are often misinformed about the illnesses that hospice covers. They may also be misinformed about the length of time a patient can be on hospice.

An important statistic indicates that the majority of hospice patients in the US are under the care of hospice for thirty days or less. We feel this is sad news because hospice care can last for six months or longer, based on the patient’s condition. The misconception that going on hospice care equals “giving up” is another that we work hard to dispel.

Why do these misconceptions persist? Possibly because we in hospice are more focused on doing our work that on sharing information about our services with the public. A more likely reason is that the modern concept of hospice is still relatively new to many Americans.

We find that many people—even those in their 60’s, 70’s and 80’s—are unaware of the services provided by hospice until we explain it to them.

We encourage you to learn more about hospice and ask that you share your knowledge with friends and family. Call Hope Hospice to learn about hospice care available in metro St. Louis at 314-984-9800. Or visit our website HopeHospiceStL.com.

Beyond Six Months

The main qualification for admitting a new patient to hospice care is a diagnosis stating that the patient has six months or less to live. But that diagnosis is an educated guess. In many instances, such a diagnosis is amazingly accurate—but not always.

Sometimes this speculation significantly underestimates a patient’s remaining months of life. Many hospice patients live beyond six months. A variety of factors can affect a patient’s longevity.

Occasionally, removing a patient from aggressive drug treatment can have positive results when major side effects are taken away. The tests and observations that identified the reason for the six-months-or-less estimate are not necessarily rendered invalid. But a change in circumstances can lead to other physical changes and attitude changes.

With certain illnesses and diseases, life expectancy can be predicted more accurately, based on medical records of other patients. But with other conditions, data may be more difficult to analyze, making the time until a patient’s passing harder to pinpoint.

Additionally, patients often strive to hang on for milestone events: Christmas, Easter, an anniversary or other family event. This determination to stay alive can actually help extend life. We at Hope Hospice have seen it occur many times. Often, once the milestone has been celebrated, a patient’s decline can be rapid.

Just because a patient is admitted to hospice care, friends and family should not presume that her or his demise is imminent. Yes, in some cases when family or caregivers wait until the very last days of life, death comes quickly. But when a doctor tells a patient that he or she should go on hospice care, this means that end-of-life is approaching. It does not mean that it is just around the next bend.

Sometimes patients do stay on hospice care beyond six months. They must be periodically re-certified according to state guidelines. At Hope Hospice, in the majority of situations, the conditions of our longer-term patients generally dictate that continued hospice care is the most appropriate form of healthcare for them.

As pointed out above, determining how long a patient will live is an inexact science. Doctors and other medical professionals give us their best evaluations and we do our best to make each patient’s end-of-life experience as comfortable and pain-free as possible.