Category Archives: Hospice from family member point of view

When The Family Has Disagreements About Hospice


When a doctor tells a family member that an illness is terminal, there may be disagreement among other family members about the next steps to take.

When dad has been told that death is just a few months away, sons and daughters may want dad to go on hospice while mom may want to continue aggressive treatment. (Or those sides of the argument may be reversed.)

Frequently, these disagreements occur because of a lack of familiarity with hospice. The concept is still relatively new, just a few decades old in the U.S. Even those in their 70s and 80s who’ve had friends on hospice may not know the full scope of hospice care and may have fallen prey to hospice misconceptions.

The most important things to know are: Hospice care does not speed up the dying process. Hospice is focused on patient comfort and pain relief. If a patient and/or caregivers want to rescind the decision to accept hospice care, it can be easily done.

It can be hard for any family member to face up to the reality that mom, dad, husband, wife or other family member will soon be gone. When a patient signs on for hospice care, there is an implied acknowledgement that life’s finish line is within view.

Convincing others who are providing input into the decision that your position (either for or against hospice care) is the correct choice can be difficult. A visit with a hospice representative can address most of your concerns and may reveal to all concerned that hospice is the proper choice. Or maybe not, for now.

We at Hope Hospice welcome the opportunity to share our story with all who will listen. If you have any questions about hospice care in St. Louis, call Hope Hospice at 314-984-9800.










Hospice: The First Steps

Where does a family member begin when the need for hospice care for a loved one becomes more than just a vague, distant possibility?

Begin with research. Go to your computer. Numerous online resources offer information about hospice care.

Talk to friends, neighbors, co-workers and fellow church members. Those who have had family members in hospice may be able to share useful input. Realize that one family’s experiences may vary widely from those of another.

Talk to medical personnel. Your loved one’s doctor, your physicians and others you know in the medical community.

Call us at Hope Hospice. If we cannot answer your specific questions immediately, we’ll get back in touch with the information you need. Our number is 314-984-9800.

Here are some of the basic facts of hospice care in the U.S.:

  • Most hospice care happens at home or in a nursing home or assisted living facility.
  • A person is deemed eligible for hospice care when a doctor determines that he or she has a life expectancy of 6 months or less.
  • The cost of hospice care is fully covered by Medicare. Also, many state Medicaid plans and private health insurance plans cover hospice care.
  • A primary goal of hospice care is pain and symptom control. Hospice works to help a patient maintain a good quality of life for his or her remaining time.
  • Hospice care is a team effort involving doctors, nurses, home health aides, social workers, chaplains and other support personnel. (Hope Hospice has a massage therapist to help with patient comfort.)
  • Hospice does not provide 24/7 nursing or personal care. It is up to family members or other loved ones (or hired caregivers) to serve as primary caregivers.
  • Hospice team members can provide guidance to caregivers who may be unfamiliar with all the necessary elements of home care.
  • A hospice agency may provide equipment such as hospital type beds and adult diapers.

The more you learn about hospice care before you or the doctor makes the call to the hospice agency, the better it is for you, the caregiver and for the patient.

You can call Hope Hospice (based in St. Louis county) with questions at 314-984-9800. You may also visit our website:













Thumbs Ups for Hospice!

The work of hospice is personal and emotional. Comments from survivors regarding hospice are revealing. Here are a handful of excerpts taken from the individual stories told at

“If I had one wish it would be to be able to reach people that have the same fears about Hospice that Fred and I had and to be able to reassure them. Hospice gave him the quality of life for his last days that he would not have had without them.”

“The people we were lucky enough to have assigned to our team while Dad was at home were some of the most caring and professional individuals I’ve ever met. They even attended Dad’s funeral service.”

“Our family is so grateful to have had Hospice. They are such wonderful and loving people and we will forever more recommend hospice services to anyone who is in need… You all make such a difference to those departing us and those of us who are left behind.”

“There simply are no words to express what I feel for these wonderful people who helped each of us, especially Mom, who was allowed to die at home, surrounded by people who loved her. I don’t know what my Dad would have done without them.”

“I appreciated the hospice staff and their attention to even the oddest of our requests during this difficult time… Although losing a loved one was unimaginably personal, hospice lent a heartfelt hand, gently guiding us through this anguished journey.”

“Hospice care does not end at the moment of death…. The warmth the hospice staff has extended to me and to my Mother’s caregivers has made it much easier for all of us to get through the past months since her death.”

Take a moment to read these stories. Click HERE to check out the full list.

If you have questions about hospice care, please call us at Hope Hospice at 314-984-9800. We serve patients and families throughout the St. Louis area.


More On Learning About Hospice

When a doctor or other medical professional mentions the word hospice to a patient or a family member, where does one turn to learn about hospice?

An article posted on this site in September 2013 offers a few suggestions.

The internet provides a number of great resources. It’s possible that an online search has brought you to this page. Here are a few more online pages you may want to check out:

Those sites should help you get started in your quest to learn about hospice.

Members of the clergy who visit sick parishioners and their family members may have knowledge about hospice and the various components of hospice care.

Ask your minister or priest for thoughts on hospice based on his experiences with church members and their family members on hospice.

Remember, too, that you can call us at Hope Hospice in metro St. Louis for information about hospice care. We can answer both general and specific questions. And if we don’t have the information immediately available, we’ll track it down. Our number is 314-984-9800.

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 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.

Hospice Is For Families, Too

When your family member receives a diagnosis of a life-threatening condition, hearing the news can be “like falling through the ice,” to borrow an expression shared in a recent St. Louis Post-Dispatch column.

While it is the patient who receives the diagnosis, the family shares the stress and the concern, if not the pain. As a loved one faces the end of his or her life, the support of family members is needed more than ever. Honest, open discussions about the final journey on life’s highway are more difficult for some families than for others. Such discussions are almost never easy.

Hospice can help. Hospice personnel, including social workers and chaplains, as well as medical staff, can help families anticipate the steps that wait ahead on the journey. Hospice team members can facilitate conversations with patients and family members that lead to better communication. In many cases, assumptions about a patient’s wishes can be totally inaccurate. Family members be uncomfortable sharing thoughts with the patient and with one another. The hospice team can play a vital role in encouraging conversations.

Families can take comfort in the knowledge that a hospice crew is monitoring their loved one’s condition several times each week and taking care to provide proper medication. Families are sometimes surprised to discover that hospice offers spiritual and emotional counsel to patients and to family members, along with medical care. Families are relieved to learn that almost all hospice costs are covered by most medical plans.

The role of the family in patient comfort and care cannot be overstated. Because hospice staff members are not with the patient on a 24/7 basis, it is important that caregivers (presumably family members) share information with the hospice team.

Hospice team members provide guidance to family members regarding what they can do to work hand-in-hand with the hospice team.

Hospice team concern for family members does not end when the patient dies. Hospices offer grief counseling and emotional support to family members upon the patient’s death and for up to a year afterward.

Hospice provides wonderful services for patients and offers much for patients’ families as well. For more information about hospice care in metro St. Louis, please call Hope Hospice at 314-984-9800. Let us know how we can help you and your family.





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.

A Survivor Speaks About Hospice

Seven years beyond his wife’s passing, a survivor recalls his experience with hospice. After grueling rounds of chemo, which were becoming less and less effective, but more and more painful, the wife chose to end aggressive treatment.

At the time, he and his wife knew little about hospice except what her oncologist shared when the doctor first mentioned hospice. The oncologist arranged for the initial hospice visit to the couple’s home. “I couldn’t believe it,” the husband said, when the hospice rep explained that Medicare would cover all costs.

Shortly thereafter, twice-weekly hospice visits began. The hospice nurse would monitor the wife’s blood pressure, weight and other vital signs. The visits, including conversations about patient comfort, generally lasted about an hour. The nurse delivered all medications to control his wife’s pain. “She never really had any real pain, thanks to the hospice,” recalls the husband.

The hospice’s chaplain called and offered his services. The husband and wife agreed that the pastor from their church could provide spiritual support. They thanked the chaplain for his concern, but declined his services.

“The nurse that called on (my wife) seemed to be kind of a therapist and a nurse. She knew how to comfort her socially and how to comfort her physically. She sat down and she was a pal to her. There was a lot of companionship there. She (the nurse) was a special lady.” The husband says, “The nurse was super smart about the right medications. They took care of all that stuff.”

“The nurse brought adult diapers because sometimes (my wife’s) control was not always that good,” he recalled.

The director of the hospice came by occasionally to monitor situation. She asked the husband, “How are you doing?” The husband said, “Pretty good, but sometimes I could use more help.” She said, “We can offer additional nurse visits.”

What did the hospice do following his wife’s passing? “After she died, they came for a follow-up interview to see if there was anything I needed, to make me comfortable, “ the husband remembers.

The husband told the hospice director, “I read the Bible and I believe in angels. I never recognized anybody as an angel until I met your people.”

The true story related above is based on an interview conducted with a surviving husband in Alabama. The hospice agency referred to is based in Birmingham.

A Salute to Caregivers

Watching a spouse, a parent, a partner, a friend or neighbor die is not easy. Serving as a caregiver for this dying person can be especially difficult. At Hope Hospice, we recognize and salute all caregivers for the support and love they provide during this stressful time.

The role of the caregiver is one that constantly changes. One week, the patient may feel good and need little more than companionship. The next week, the patient can suffer physical and mental decline and require constant attention. One week, the patient may want to talk freely about death, the family and the future without him or her around. The next week, the patient may be uncommunicative or even hostile.

When a patient goes on hospice care, the hospice team goes into action. At Hope Hospice, our team includes doctors, nurses, home health aids, a social worker, chaplains and a massage therapist. These hospice professionals work closely with caregivers to offer support and guidance. They also depend on caregivers to share information about the patient’s condition and attitude.

Making sure the caregiver knows how to respond to certain patient situations is a big part of what hospice team members do. Experienced hospice personnel can also counsel the caregiver regarding his or her own mental and physical well being.

For caregivers, having good backup from another friend or family member is vital. Getting away from the house or apartment and taking time away from this stressful circumstance is essential. Caregivers must be sure to take care of their own needs, such as getting proper sleep and nutrition.

As a patient declines and loses his or her appetite, a caregiver can experience frustration when the food she or he prepares is not eaten. Among other serious concerns are patient hallucinations and loss of memory, which can result in caregiver stress. At Hope Hospice, we help caregivers both anticipate and respond to these occurrences.

The most important thing for caregivers to know is that hospice personnel are available to provide assistance 24 hours a day, 7 days a week. To our hospice patient caregivers, we salute you for all you do.

Hospice Care For The Patient’s Family

Of course, the care given by Hope Hospice begins with the patient. It is the patient whose vital signs are monitored. It is the patient whose freedom from pain is our #1 goal. It is the patient who is visited each week by a nurse or home health aid. It is the patient whose condition is discussed by the Hope Hospice team at our weekly meetings.

But the family and other caregivers also receive great assistance from hospice care. The hospice team is a resource that family members can depend on from the moment their loved one qualifies for hospice care and is admitted as a hospice patient.

At Hope Hospice, our team includes a social worker and two chaplains. They know that each situation is different. They work to accommodate family dynamics, which may change during the course of a patient’s time with hospice. They can offer informed guidance at times when family members may not know which way to turn. They share not just information, but also compassion.

During the last few days of a patient’s life, when bedside vigils continue around the clock, the Hope Hospice medical team works to ensure that the patient is free of pain. The team also works to provide certain types of basic care to the patient that family members may not be able to provide.

For family members who have not experienced the death of a close relative (spouse, parent or sibling), the obligation to make important decisions can be overwhelming. This is when hospice team members (medical staff, social worker, chaplain) can present useful input to assist in making those decisions. In some cases, the Hope Hospice team simply provides another opinion. In others, our team leads family members through a process they have not previously traveled.

After death occurs, our team stands by to offer grief counseling and to answer questions that may continue to arise. Though our time with patients and their families may be brief, from as little as a few days to as long as several months, we do tend to establish strong bonds. Our mission is one of compassion and love—for our patients and for our patients’ families and caregivers.