Monthly Archives: September 2013

Hospice Experiences

It is an amazing thing to see. Do a Google search for “hospice experiences” and examine the results. Almost all of the 5,000,000+ articles, blogs, letters, etc. talk of positive experiences with hospice care. Some are brief; others are long. Some patients received hospice care at home, while others received care at a nursing home or other care center.

In most of these stories, it is the survivors who tell about the loving care their parent, spouse or other loved one received. A few entries are written by patients. Others come from hospice staff and volunteers.

Suggestions include carefully interviewing and assessing the hospice care agency you are considering. Another reminds family members to talk to the patient about end-of-life thoughts and wishes and remember that it is ultimately the patient’s decision. Having conversations about hospice sooner rather than later is recommended often.

One person writes that she believes hospice actually extended the limited amount of time her husband had left. She praises the hospice that cared for her husband and thanks them for limiting his pain and suffering.

Not all experiences with hospice found via Google search were good ones. Communication issues are cited. Personnel changes that occurred after a patient bonded with a particular staff member were mentioned as being disconcerting.

In these online writings about hospice, it is repeatedly mentioned that hospice care yielded surprises because the range of services presented by the hospice team was greater than had been anticipated. Also surprising to many was the level of personal involvement by hospice staff and volunteers in patient care and family dealings.

Believe it or not, your Google search for “hospices experiences” may even deliver a good chuckle. Humorist Art Buchwald (who died in 2007) wrote of his hospice experience: “I never knew how many perks were involved with dying. I have to be honest: I’ve enjoyed every moment of it.”

At Hope Hospice we know that, while some things are consistent with most patients, every person’s experience with hospice care is different. To learn more about hospice care and what can be expected, call us at 314-984-9800 and let us answer your questions.

A Word to Learn: Palliative

If you’re seeking information about hospice care, you may have happened upon an unfamiliar word: palliative. It’s a good word and one that describes much of what hospice care is all about.

Palliative care focuses on relieving and preventing pain and suffering. As does hospice care. By definition, though, palliative care refers to treatment for all who are suffering with pain. This includes those patients with chronic conditions, those who are aggressively treating diseases and those who are not treating diseases (and may have opted for hospice care).

Palliative care in each of its circumstances works to provide comfort to patients but does not directly work to eradicate the disease or the condition causing pain.

Whereas palliative care is a major part of all hospice care, not all palliative care is administered as part of hospice care. There are precise differences in the definitions of the two terms.

They are, however, closely related. The main group for America’s hospices is the National Hospice and Palliative Care Organization (NHPCO).

Palliative care is not just about medications. “No specific therapy is excluded from consideration,” states NHPCO’s Standards of Practices for Hospice Programs in its section regarding palliative care. “The expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life.”

A New York Times article earlier this month (click HERE for link) indicates that some hospitals are putting patients who are suffering from chronic pain but are not quite ready for hospice into palliative care units. One medical expert is quoted as saying, “We’re going to see more and more of this as patients age.”

To learn more about hospice care and the important element of palliative care, call Hope Hospice at 314-984-9800. You may visit Hope Hospice online at hopehospicestl.com.

How To Learn About Hospice

When it becomes known that a person is facing a potentially life-threating health crisis, the word “hospice” will inevitably be mentioned.

Even when treatment is going well, a family member, a friend, a fellow churchgoer, a co-worker, a neighbor or someone else you know is likely to ask if you have considered hospice for your loved one. If you are like many people, your reply will indicate that it is an option for “sometime down the road.”

No matter how far away “sometime down the road” may be, now is a good time to learn about hospice care and all it includes. Hospice patients and their families throughout the world are frequently surprised (in a good way) by the many elements of hospice care. Often, they only realize all the services that hospice care delivers after the patient has signed on with a hospice agency.

So how can a person learn about hospice before the time comes to seriously consider hospice care? Here are a few suggestions:

  1. Ask your friends. Talk to those who’ve had family members pass away in recent years. Ask them about their experiences with hospice. Ask them what they liked and if there was anything they didn’t like.
  2. Do research. Go online and search for “hospice care.” Go to Amazon.com for books about hospice. Visit your library for books on hospice.
  3. Call a hospice for information. You can call Hope Hospice at 314-984-9800 ask questions. You may also request our brochure, which includes answers to many questions. We would be happy to send you one.
  4. Visit a hospice website. Our Hope Hospice website may be accessed by clicking HERE. Go to our FAQ page and our “About us” page for useful information.
  5. Check out the New Old Age blog on the New York Times website. Click HERE for good information and opinion. (Note: You may have to pay for continued access to this and other New York Times web content.)

As writer Jane Gross points out in one of the posts on the NYT’s New Old Age blog, “Don’t wait for a crisis.” Act now to learn what you need to know about hospice.

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.

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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.

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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.

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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.

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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.

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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

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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 HopeHospiceSTL.com.