The Meaning of Hospice: The Opposite of Giving Up

The Meaning of Hospice

A difficult aspect of hospice care is recognizing when to begin. Perhaps the biggest obstacle is realizing that hospice care has nothing to do with “throwing in the towel.” Simply put, hospice is not the end of life, but rather the beginning of a style of care that is appropriate to the situation.

It’s true that insurance definitions of hospice include a six-month prognosis of a terminal condition. Yet, in many cases, people get better and return to other forms of care or have to extend their six-month outlook. The purpose of making this point is not to paint false hope, but to open wider the possibilities of comfort, learning, and framing the outlook of the patient and the family.

Most important, a timely transition to hospice care can improve quality of life, even and especially when we are faced with difficult news.

The Best Time to Talk is Before

Just as “the time to make friends is before you need them,” the most productive time to have a family conversation about how we prefer to navigate the last chapters of life is before we are facing them. It may not be an easy conversation to start. In fact, people have  the tendency to put off this talk. That postponement can continue right up to the day when decisions cannot be put off any longer and care is needed.

Families can overcome this hesitation. Good chances to begin the dialogue come along frequently – if only we can recognize them. The funeral or life celebration of a friend or loved one can be the seamless backdrop for beginning to talk without alarm about one’s own preferences for care when life begins drawing to a close.

And these openings include happy times, too. Family reunions, holidays, or any time we are together can be an opportunity. Talking about the lives of those who came before us – as we do sometimes in these gatherings – can be a good time to begin.

Later Can Be Good, Too

But if the prospect of a terminal diagnosis comes before we’ve had the opportunity to discuss our preferences of care, then it is never too late to talk about it. The urgency of this decision can prompt a discussion, but it will be important to understand the hesitance felt by everyone involved.

For the patient, everything we’ve learned about persistence and tenacity in life may stand in the way of accepting the diagnosis we have been given. The truth is clouded by ideas like “fighting for life,” or “beating this.” These perceptions can be admirable and even beneficial sometimes, but too often they cause more suffering not only for the patient but also for families and loved ones.

For the family, acceptance may be easier or harder, but it certainly will be complicated. Life events and history come forward, and the roles we took as children in the family can be difficult to overcome when it comes to advising and decision-making.

For the attending physician, the recognition that it is time for hospice may not be as clear-cut as it sounds. Even with thorough medical knowledge and compassionate intent, doctors, too, might see hospice as a form of “giving up.”

Knowing these different perspectives can help us better understand and move forward with a discussion despite all this natural hesitation.

Resources for Support and Understanding

Because Oxford HealthCare is experienced in the broadest range of needs – not just hospice – our perspectives on how to discuss hospice and when to consider it can be very helpful and bring greater comfort.

Contact one of our Care Coordinators, and we will be happy to provide resources and options to help, wherever you may be on the journey.

“When words fail, music speaks” Hans Christian Anderson

By Carol Combs, MSW – Oxford’s Memory Care Program Coordinator

While working in a skilled nursing facility, I had the opportunity to witness remarkable things. I was amazed to see individuals with dementia who could not put together a sentence, but could sing an entire song. Their faces would brighten, and I could see mood changes along with toe tapping and smiles. Soon, others would join in. Although the disease had taken so much away from them, music was a wonderful way to engage and encourage them.

The language area of the brain is impacted early in the Alzheimer’s disease process, but music touches a different part of the brain. The area of the brain linked to music is relatively unaffected by Alzheimer’s disease; so musical memories are often preserved. Rhythmic responses require little to no cognitive processing; so, a person’s ability to engage in music—particularly rhythm playing and singing—remains intact late into the disease process. Some individuals will respond to music when nothing else seems to reach them.

Music can provide emotional and behavioral benefits for dementia sufferers. Listening to music or singing can relieve stress and reduce agitation, anxiety or depression. For caregivers, music is a way to connect with loved ones who have difficulty communicating. Most people associate music with important events and emotions, and selections from a person’s young adult years—ages 18-25—are more likely to elicit a strong response. As an individual progresses into later stage dementia, music from childhood works well. Although individuals may not be able to verbalize or demonstrate affection with loved ones, they can still move with the beat of a favorite piece of music until very late in the disease process.

Caregiver Tips:

  • Experiment with different types of music to see which evoke the best reaction.
  • Play music or sing as the individual is walking to improve balance or gait.
  • Choose relaxing music, a familiar, non-rhythmic song to reduce sun downing or bedtime issues.
  • Compile a musical history of favorite recordings to help with reminiscing and recalling memories.
  • Encourage movement with the music —clapping or tapping feet, or dancing if possible.
  • Play or sing soothing songs to calm someone during mealtime or personal hygiene care.
  • When playing music, eliminate competing noises such as television or outdoor sounds.

Singing is associated with safety and security from early life. When caregivers engage in singing with their loved ones, it provides an opportunity to connect, even when the disease has deprived them of traditional forms of closeness.

“Music is the literature of the heart; it commences where speech ends.”
Alphonse de Lamartine

Oxford Hospice provides numerous home care programs—including music therapy—to help caregivers and their loved ones. Oxford HealthCare is dedicated to helping families enjoy time together and remain at home. If you have questions about Oxford Hospice, Oxford’s Memory Care Program or receiving help at home, please contact a Care Coordinator, today.


Source: Alzheimer’s Foundation of America


George’s Beautiful Journey

By Marian Michaliszyn, Oxford Hospice Chaplain

Serene Forest PathWhen George was a child, his mom told him that “religion is good, but take it in small amounts.” So many years later, when he decided on hospice care, he declined chaplain visits for himself. He did request visits for his wife, because he thought it would help her after his death.

What George did not count on was the connection he and I made during the months I visited. Our visits began with general conversation, which then led to issues he’d had on his mind for decades.

George wanted to talk about his life journey starting with his childhood during World War II. He shared about high school and how he and his friends fixed up an old roadster and took turns driving it. He told me about a wonderful girl he met in high school who became his wife.

George spoke of his time in the Korean War and how the GI bill led to his career in communications. He considered himself a “self-made man” whose life choices and decisions brought him from California to Missouri.

Eventually, our conversations turned to religion. He told me about his experience at a tent revival at age 11 and about dismissing God and embracing science. Perhaps remembering his mother’s advice, George often said, “Religion had the last 3,000 years of rule in the lives of humans and now it’s time to let science have the next 100 years to shape society, and then see which is better.”

One day, we had a very powerful visit. When I arrived, George wanted to get away from his house so we could talk privately. We went to his boat dock, and George stated that he had a horrible night. He was confronted by the reality of his death and what happens afterword. There was a feeling of darkness and foreboding, and for the first time in his life he did not feel in control.

As we talked about the reality of death and making peace with God, I actively listened and offered faith resourcing as we discussed the meaning of life and George’s spiritual journey. As we shared with each other, George came to a place of resolving his questions of faith, religion and having peace in his spiritual life.

Not long after that visit, George died. When I went to see his wife and family, they shared how they all noticed George’s peaceful smile on his face. This was a great comfort to his family.

It was a privilege to share this part of George’s journey, and a privilege to continue the journey with bereavement support for his wife and children. With all the experiences, questions and concerns he shared, I was honored that he trusted me to be a non-judgmental listener.

What an amazing life he lived, and what a beautiful journey.


November is National Hospice Month and National Alzheimer’s Awareness Month

By Elizabeth Lee, RN, BA, CHPN Oxford’s Hospice and Palliative Specialist and Carol Combs, MSW Oxford’s Memory Care Program Coordinator

Hospice is a wonderful and caring option for people who are facing end of life illness. The primary goal of hospice care is to help maintain the highest quality of life in the last stages of an illness.

Hospice serves individuals with any terminal illness, including Alzheimer’s disease. The Hospice Interdisciplinary Care Team includes the physician, nurse, social worker, chaplain, aide and grief services. This team works together with the patient and family to help manage the unique needs of end stage Alzheimer’s disease and other related dementias.

Hospice focuses on comfort, support and managing pain rather than providing treatment. People with Alzheimer’s disease become more disabled over time; and with advanced dementia, individuals can no longer communicate their wants and needs. Focusing on the senses—touch, hearing and sight—can bring comfort when verbal communication cannot.

An Alzheimer’s patient could be eligible for Hospice care if they:

  • Are unable to ambulate without assistance
  • Are unable to dress or bathe without assistance
  • Are unable to swallow
  • Are unable to speak or communicate meaningfully
  • Have urinary and fecal incontinence
  • Have UTI’s (urinary tract infections), decubitus ulcers and/or aspiration pneumonia

The end of life path of hospice patients can be divided into one of three typical patterns:

  1. A short period of obvious decline at the end (typical for most cancers)
  2. Long-term disability with periodic intensification and unpredictable timing of death (typical for a patient with chronic organ system failure)
  3. Steadily declining function with a slowly dwindling course to death (typical for a patient with frailty, dementia or Alzheimer’s)

End of life decisions become more complicated if wishes have not been or cannot be expressed by the dying person. Families then have to speak for the person based on their knowledge of the individual’s values and beliefs.

What is the current quality of life, and how will the on-going treatment potentially impact quality of life?

Patients and families need to understand benefits versus burdens before treatment continues or is introduced. This requires truth telling and explanations in a language the patient and family are able to understand.

Family members caring for a dying loved one with Alzheimer’s often express relief—for the patient and themselves—when death comes. It is important to understand that these feelings are normal.

Hospice can help the patient and caregiver deal with the challenges faced in the patient’s final months, and offer grief support both before and after the loved one dies. Hospice helps ensure the highest quality of life while being treated with dignity and respect.

For more information about Oxford’s Hospice or Memory Care Programs, please contact one of our Care Coordinators, today.




By Pam Gennings, Executive Director Special Projects*

Over the years I have heard countless family members say:

“I wish Mom had been placed on Hospice sooner.”

“Why did the doctor wait so long to talk to us about Hospice care for Dad?”

“Mom was only on Hospice a week before she died. The Hospice staff was so wonderful to Mom and our entire family; I wish we were offered Hospice much earlier.”

It is unfortunate that some patients are referred to Hospice so late in the disease process, because the patients and their families miss all the benefits Hospice offers.

Many people think Hospice is only appropriate for people with cancer. However, according to the National Hospice and Palliative Care Organization (NHPCO) cancer diagnoses account for less than half of all Hospice admissions (36.5%). The majority of Hospice admissions are due to other terminal diseases and illnesses such as Alzheimer’s disease, lung disease and heart disease.

Hospice is not about death; it is about living and helping patients and their families make the most of the time they have together in familiar surroundings with comfort and dignity.

Early Hospice Intervention Provides:

  • Support to the patient and the entire family by providing a team of professionals and volunteers. As the patient’s needs and condition change, the amount of support and help will change accordingly.
  • The patient and the family time to develop a rapport with Hospice staff. When end-of-life planning can be done early, it frees the patient and family to focus on the quality of their lives and making the most of the time they have left together.
  • Improved patient comfort through better pain control and symptom management.
  • Access to spiritual and bereavement support from chaplains and social workers for both the patient and the family. These professionals can help both the patient and family deal with unresolved issues, and provide them the opportunity to express their feelings and work through any fear or anxiety they are experiencing.

If you would like more information about Hospice, please contact one of our Care Coordinators.

*Pam Gennings has a Bachelor’s of Arts and has worked in the field of Geriatric Social Work and Care Coordination for more than 30 years. She started working for Oxford HealthCare in 1993. During the course of her career she has helped thousands of people find resources to remain in their homes as well as provided guidance to families that were facing difficulties with their aging loved ones.





How to be Grateful During Difficult Situations

By Carol Combs, MSW, Oxford’s Memory Care Program Coordinator

Dealing with a chronic illness or being a full time caregiver is stressful and exhausting, but it is also a time you can be grateful.

My mother always said, “God won’t give you more than you can handle.”

I remember times in my life when I thought He was really pushing my limits!

You can’t hide, ignore or bury the challenges you face, but gratitude can help put things in perspective. Gratitude reduces stress, improves your mood, strengthens relationships, and in general, makes us happier. Gratitude helps us realize what we have. It doesn’t come naturally, but is a chosen attitude through life’s challenges.

So, how do you have gratitude? Try these tips:

  1. Recognize you aren’t alone: Everyone deals with difficult situations. Put things in perspective by reminding yourself, “Well, we could be dealing with ______.” Or, “At least we have _______.”
  1. Focus on the positives: Acknowledge the hurt, loss, exhaustion or difficulties, but take a moment to focus on one good thing about today or something you appreciate about someone.
  2. Keep a journal: Every day, write down one or two things you are grateful for and why. Writing out your feelings can help relieve anxiety and stress.
  3. Ask yourself: “What can I learn from this; and, when I look back on this without emotion, what will I be grateful for?”
  4. Count your blessings: Focus on something good in your life, even if it’s only for a few minutes each day.

It takes effort to reframe your view of life, especially when experiencing stress and exhaustion. Gratitude can help your outlook, but it doesn’t eliminate the need for emotional support, education and practical hands on help. Seek out the help you need and accept it when offered.

Oxford offers a wide variety of supportive services and care in the home. If you would like to explore options for care, please contact one of our Care Coordinators.

Source: Elizabeth Heerema, MSW, newsletter