Category Archives: Guidance to caregivers

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:













Hospice and Nursing Homes

Hospice patients receive care in private homes and in nursing homes. A family member or other loved one may not, for any of numerous reasons, be able to take care of a hospice patient at home. A nursing home may be the best option.

For those in nursing homes, hospice professionals provide most of the same services they provide for patients in private homes.

Hospice teams help patients in nursing homes, as well as their families and nursing home staff. When care is properly coordinated between hospice staff and nursing home staff, the patient benefits and family members are reassured.

Frequent visits by hospice nurses allow the hospice to keep close tabs on a patient’s condition. A hospice physician may visit the patient as needed.

An important part of the hospice care for nursing home patients is pain control. The hospice team makes sure that the patient has medications to address pain and discomfort. The hospice staff works closely with nursing home staff to make sure medications are administered correctly.

Good communication is vital. When a hospice care team gives information about a patient’s specific condition to the nursing home team members, it helps the nursing home staff provide the best possible routine daily care. Likewise, the nursing home team—who work with the patient on a continual basis—needs to be ready to share important information about the patient with hospice personnel, especially significant changes in a patient’s condition.

Of course, the hospice team provides the same emotional and spiritual support to nursing home patients and their families that they offer to those receiving hospice care in private homes.

If a determination is made that your loved one should transition into hospice care and circumstances make it difficult for you to be a caregiver, call us at Hope Hospice and let us help you place your loved one in an area nursing home that meets your needs. Call Hope Hospice at 314-984-9800.




How Do I Know When It’s Time… To Ask About Hospice?

In some families, it’s easy to talk about sensitive subject matter. In others, one has to be extra careful about what is said to immediate family members.

Who should bring up the subject of hospice and when? Should the doctor or team of physicians be the first to broach the subject? Should the patient be proactive and ask questions? Or, should the patient wait for a spouse/partner, a sibling or an offspring to offer the first mention of hospice?

The answer is—there is no specific answer. If the patient is of sound mind and is in control of his or her healthcare, the patient may want to initiate the family discussion. The patient, however, may encounter resistance from family members who say things like, “Don’t even go there. You’re gonna beat this thing.”

Even if the patient is confident of recovery/remission, there’s no harm in asking about hospice now. None of us is going to live forever. When—at some future date—the information about hospice becomes relevant, the patient (and, presumably, caregivers) will possess the knowledge.

A concerned caregiver may want to make the first inquiry. Learning about hospice and sharing that information with the patient helps demystify the concept. It can also soften the starkness of a doctor’s suggestion somewhere down the road to contact a hospice agency.

Hospice personnel everywhere are acutely aware that while most adults have heard of hospice, many know little about what hospice is and what it does.

At Hope Hospice we answer questions every week from patients, family members and medical personnel about our services. Whether your questions are general or specific, feel free to call our offices anytime at 314-984-9800.

Hope Hospice is based in St. Louis county (Missouri) at Manchester and Barrett Station roads. We serve patients and families in St. Louis city and county and in Jefferson, St. Charles and Franklin counties.





Blessed Are The Caregivers

It is an enormous responsibility. It takes huge amounts of time and patience. It can be physically and mentally strenuous. But serving as a caregiver for a dying family member can be a blessing.

At Hope Hospice we work closely with our patients’ caregivers, providing support and encouragement as well as information and guidance.

The caregiving time, whether a few days or a few months, allows for closeness to a degree that both parties may not have experienced before. The time when death is approaching can lead to surprising candor and even unexpected revelations.

A caregiver can feel that his or her mission is a thankless one. When other family members and even the patient neglect to offer an occasional thank you, the caregiver can become frustrated and resentful. It takes a strong character to realize that yours is special role and you are a special person for accepting the role. (Even if you had little choice.)

Most of us, during our lives, have few extended periods of selflessness that caregivers provide. The challenges of caregiving are immense. Don’t be afraid to ask for help from others, including other family members, your church community and good friends. Remember also, as you take care of the patient, it is important for you to maintain your own good health.

When the demands of caregiving become overwhelming, take comfort in knowing that your hospice team members are standing by to help. When problems arise hospice professionals will work to lead you to the right solutions.

For information about hospice care in metro St. Louis, call Hope Hospice at 314-984-9800.









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.

Nursing Homes and Hospice Care

At Hope Hospice, we care for many patients who are at home. They have caregivers who have the time and energy to handle patient needs between hospice staff visits. Research tells us that most end-of-life patients say that they would prefer to die at home.

But for patients whose needs cannot be met by in-home caregiving, Hope Hospice provides care for patients in nursing homes and assisted living facilities.

Certain family situations may make it difficult to take care of a patient at home. A skilled nursing facility may be the answer.

If you are considering placing a loved one in a nursing home, we encourage you to take care in your selection. Find the home that best suits the patient’s needs. Don’t judge the home merely on its physical appearance. Talk to friends who’ve placed patients in nursing homes.

At Hope Hospice, we serve patients who are in nursing facilities throughout metro St. Louis. The care we provide is a covered benefit through Medicare.

While the patient enjoys the services of the nursing home staff, the Hope Hospice team members make frequent visits to the patient. Hospice staff monitor vital signs, offer pain management and spiritual support, among many other services. We also provide necessary medications and supplies related to the patient’s terminal illness.

We work to coordinate care with the nursing home staff. We depend on the nursing home team to provide routine daily care to the patient and to report any changes in the patient’s condition.

If you have a family member who is facing a terminal illness but you are not able to provide full time in-home care, call us at Hope Hospice for help. We can provide answers about nursing facilities. We can also offer information about other options, including in-home care from an outside provider.

Feel free to call Hope Hospice with any questions you may have about hospice care at 314-984-9800.

Making the Call to Hospice

The doctor tells your loved one (the patient) and you (the caregiver), “You need to call hospice.” What next?

The doctor may give you the name of a specific hospice organization or, perhaps, several. You may choose whichever hospice you wish.

Should you choose to consider Hope Hospice for hospice care, we have two individuals who can meet with you and explain what hospice is and what it is not. Our community liaisons are Sarah and Carl. You can reach Hope Hospice at 314-984-9800 to schedule a visit with Sarah or Carl.

Sarah and Carl are experienced hospice care experts who have worked with numerous patients and families over the years. They have answered hundreds of questions from patients and caregivers. They know that while many patient situations are similar to others, each individual situation has elements that make it unique.

Similarly, while all hospice care organizations have things in common, each has its own characteristics. Hope Hospice is a privately owned, independent hospice. Hope is not part of a large hospital group. Hope is not a part of a national hospice chain. When a Hope Hospice nurse or other professional has a special need for a particular patient, approval from the owner is easy to obtain because the owner is right here in the office in St. Louis County.

We know that even after the doctor has said that it is time for hospice, you may be hesitant to make the call. This is understandable. You may want to wait a day or two to allow the gravity of the situation to register fully.

Rest assured that we have counseled many patients and families about what to expect from hospice. Expectations are frequently quite different from reality.

You may never feel completely comfortable about making the call to hospice. But when the time feels right, please call us at Hope Hospice and let us set up a visit for you with Sarah or Carl. Our number is 314-984-9800.



Gail Sheehy on Being a Caregiver

If you find yourself suddenly the caregiver for a parent, a spouse, a partner, a sibling, you may be overwhelmed. Not only are there many new responsibilities, there is much mystery that lies ahead. Where do you go for help? Who can tell you what to do in this new role?

One source of useful guidance is the 2010 book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy. She is the author of the 1976 book Passages, which helps define several phases of adult life. She now describes herself as “author, journalist, lecturer, advocate for caregivers.”

In Passages in Caregiving, she writes about the episodes in her husband Clay Felker’s slow demise. He died in 2008, seventeen years after his first cancer diagnosis. She writes about things she learned from personal experience, as well as insight she gathered from talking to other caregivers.

In the book, she identifies eight distinct “turnings,” starting with “shock and mobilization” and ending with “the long goodbye.”

Among her tips to caregivers is encouragement to take charge of the situation. She writes to caregivers: “How you handle this crisis will shape how you feel about yourself and almost certainly will change you in ways that follow you to the end of your days.”

She also tells caregivers, “We cannot do it alone. No one can.” She writes: “We need to grow a network of family, friends and veteran caregivers to help us understand what we’re going through and pitch in wherever they can.”

Of hospice care, Sheehy writes: “Caregivers often receive the most cherished benefit of hospice care. They and other family members almost universally express gratitude for being guided and supported through the mysteries of the dying process.”

As we at Hope Hospice tell patients and caregivers, every situation is different. But there are common elements that exist in most end-of-life experiences. Similarly, your caregiving experience will be different from that of Gail Sheehy. But by having walked that path, she is able to share her story (as well as those of other caregivers) in a way that can provide you a better idea of how to proceed.

If you are a caregiver and have questions about hospice care, call us at Hope Hospice at 314-984-9800.

(Passages in Caregiving is available from Amazon in a print edition and e-book. The Kindle version comes with several videos on the topic. It is also available in local libraries.)

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.