Category Archives: Dealing with terminal diagnosis

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.










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.



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.

First Impressions

You only get one chance to make a good first impression. We know that many of the people who call us at Hope Hospice or meet us for the first time are in uncharted waters. They may be dealing with their own recent terminal diagnosis or that of a loved one. When a doctor says death is approaching, it takes a while to come to grips with that information. We are sensitive to the fact that any person who calls us may be in a difficult state of mind.

We also know that many who call us may have little familiarity with hospice care, what it is and what it is not. They may not be aware that differences exist among St. Louis area hospice care agencies.

Rather than recite a memorized list of bullet points about Hope Hospice when that first call comes from a newly referred patient or caregiver, we try to find out first about the patient’s situation. Every patient is different. What is the patient’s current condition? Are there special circumstances we need to know about? Who will function as the patient’s caregiver(s)?

We hope that the first impressions we make upon those who call us will serve to establish confidence in our abilities to deliver hospice care with love and compassion. We also are concerned about making good first impressions when we meet patients and caregivers in person.

In addition to showing up at the appointed time, we work to communicate clearly what we do and how we can meet a patient’s specific needs. We listen. We make eye contact. We explain why an independent, locally based, family-owned hospice may be the best choice for the patient and the family and other caregivers. But mainly, we focus on the primary concerns of the patient and those who love the patient.

We know that a good first impression influences the decision by concerned parties to let Hope Hospice be a part of the end-of-life process. Call us for information. We are standing by to make a good first impression on you. Call Hope Hospice at 314-984-9800.







How to Select a Hospice

When a terminal diagnosis is given and the doctor recommends hospice, what should be your next step? For almost all patients, family members and close friends, there are moments of tears and sadness—even if the patient has been ill for a long time. But then the recommendation needs to be addressed.

The doctor may give contact information for one or more hospice care agencies. She or he may refer the patient to a hospice affiliated with her or his medical group. But patients and families are free to choose their own hospice organization.

We suggest that you seek information about hospice organizations. The patient and caregiver(s) should collaborate on a decision. But, whichever agency you select, we encourage you to connect with a hospice care agency as soon as possible. The patient may be relatively comfortable and in need of only minimal care today, but those situations can change literally overnight. It’s best to have a hospice agency engaged before the need is critical.

Some questions to ask as you talk to hospice agency representatives:

  1. How many visits does the patient receive each week?
  2. Is the hospice an independent agency or part of a multi-state organization?
  3. Does the hospice have testimonials from families of previous patients?
  4. Who are the hospice’s non-medical team members? (Social worker, chaplain, massage therapist, etc.)
  5. Does the agency furnish supplies other than medications? Such as adult diapers, if needed?
  6. How easy is it to reach hospice personnel on weekends and overnight?
  7. How responsive is hospice staff to problems and complaints?

Don’t be shy about asking these questions. At Hope Hospice we are eager to answer any and all questions about the services we provide. We know that the more you know about hospice and about Hope Hospice, the more likely you and your loved ones will be satisfied with the decision that is made.

Read More About End-of-Life

If you arrived at this page via an internet search, you may seeking information and opinions about hospice. Maybe someone you love has recently been diagnosed with a serious medical condition or has been given a terminal diagnosis.

This site and others can suggest things to be concerned about as your loved one faces the possibility of death. Your hospice team members can offer huge amounts of guidance and counsel. But it’s a good idea to collect as much input regarding death and dying as possible beforehand.

In addition to surfing the net for articles and postings about death, hospice and other end-of-life concerns, look to books. Your local library or bookstore will have relevant books that contain meaningful content from caregivers, hospice personnel, doctors, family members and others who can provide insight.

Online booksellers such as Amazon offer a long list of such books, available in print copies or as downloads to Kindle, Nook, iPad or other electronic devices.

Hope Hospice always advises those who have received a terminal diagnosis to reach out to a hospice agency as soon as possible. Similarly, it’s a good idea to become informed about death and the dying process earlier, rather than later.

Here are a handful of titles you might want to consider:

Final Gifts, Understanding the Special Awareness, Needs, and Communications of the Dying by hospice nurses Maggie Callanan and Patricia Kelley (published 1997)

Dying Well, Peace and Possibilities at the End of Life, by Dr. Ira Byock (published 1998)

At the End of Life, True Stories About How We Die, edited by Lee Gutkind (published 2012)

On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, by Elisabeth Kubler-Ross, M.D. (published 1969)

Remember, the time to read these books is now. Your loved one may have years left or she/he may have weeks. The process of dying is made up of many elements. The more you know, the better for you and your loved one.

The Unreality of Death

For some of us, certain events in life may seem unreal.

Saying “I do” in your own wedding ceremony, signing the papers for your first home, witnessing the birth of your first child—these are moments that, as they occur, you realize are life milestones. Often, there is an instant within such a moment when you think, “Is this really me? Is this really happening?”

When you visit an iconic landmark in person or see a famous individual up close, an “Oh, wow!” may flash through your mind as you think, “There he/she/it is and here I am, seeing her/it/him through my own eyes. Am I really here?”

Similarly, when a loved one receives a terminal diagnosis, the cold reality may be hard to process. “Is my dad, the strong and wise man who has always been part of my life, actually mortal? He’s always been here—could be really die?” While you consciously know that your spouse/parent/sibling has limited time remaining, the situation can be almost unreal. “Is this really happening? To him/her—–and to me?”

The change in situation affects not only the person facing death, but also those who will survive. Friends and family behave differently. There are concerns about how to behave, concerns about how to face the future, concerns about dealing with loss.

At Hope Hospice, our chaplains and social workers provide guidance daily for those who have difficulty coming to grips with the approaching death of a loved one. We know that it may seem unreal.

The message here is for caregivers, family members and friends to face the reality of the situation. Yes, it may be like no other life event you’ve witnessed before, but the dying process is a significant time—for the person who is dying and for those who survive. When the thought “Oh, wow, is this really me sitting next to my dying parent?” pops up, embrace the reality.

It may be hard to say things you want to say. You may think, “I’ll share everything during the final moments of (my loved one’s) life. I’ll call his/her old friends when he/she is near the end.” Reality dictates that you need to do these things sooner rather than later.

John Mayer wrote the song “Say,” for the movie “The Bucket List,” a film about two men facing death. Mayer sang: “In the end, it’s better to say too much than never say what you need to say again. Even if your hands are shaking and your faith is broken, even as the eyes are closing, do it with a heart wide open.”

As unreal as the prospect of death may seem when it looms close by, death is real. The experience of watching someone you love slowly fade away is real. Death, after all, is part of life.