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Life’s Great Irony: Death is the Only Guarantee

Jennifer JohnsonBy Jennifer Johnson, MSN, NREMT, APRN, FNP-C

As I reflect on my work at Hospice, a particular article attracted my attention, “Death Is Not An Option, How You Die Is” (Nevidjon & Mayer, 2012). This article drew me in because of its focus on openly talking about death.

Prior to working at Hospice of the Red River Valley, much of my career had been spent using medical intervention with the intent to cure. My last three years were spent working with oncology patients. I have often said, I found my heart there. But I also felt a void. That void came from watching some individuals triumph through treatment, while others struggled. Some understood their fate was in their hands while others did not. As I complete another week here at Hospice, I understand that void was the ability to slow down, listen and grant permission to be in control of your destiny.

This realization really hit home for me at the conclusion of my week. I had the privilege of visiting with two families. For the first time in my career, I spoke openly about death and dying. I spoke with an individual who had never been told it is alright to stop trying to find a cure and, instead, focus on quality of life versus quantity of life. I also spoke with a daughter who struggled with role reversal; she is now the caregiver to a parent rather than the one who is cared for, and learning how to deal with the ultimate ending of death. I see my own father struggle with role reversal, as his mother is now under hospice care.

With all families, I discuss how ironic it is that our biggest fear in life is also the only guarantee in life. As I tell my children, the only promise I can make is that if you were born some day you will also die some day. Death is not something we should fear, but embrace. The first hurdle is to openly talk about it.

For more information about end-of-life care or tips on how to start a difficult conversation, please visit our website.

Jennifer Johnson is a nurse practitioner at Hospice of the Red River Valley.

What is respite? Do I need it?

Judy PetersonBy Judith Peterson

Respite care was established to provide care to the patient and the caregiver. It serves as a lifeline to the caregiver and provides a break from the emotionally and physically challenging role of providing end of life care to a loved one. It can also provide a much needed change in the day to day routine of the patient.

One day as I visited with a caregiver for a patient at end of life, she said to me, “I used to weigh 160 pounds and my blood pressure was 120. Now I weigh 120 pounds and my blood pressure is 160. She laughed, but in assessing her situation further, I discovered she was saying she was exhausted and her health was now failing because she had no time to take care of herself.

There are many reasons why respite care is not readily taken advantage of, as it becomes particularly challenging for the caregiver. There are feelings of guilt and abandonment associated with “taking a break.” There is also a sense of obligation and the need to “tough it out.” The caregiver may recognize the difficulty of caregiving, but not know where to turn for much needed help and a break.

Patients under the care of Hospice of the Red River Valley may use their Medicare benefit and, sometimes, private insurance for a respite stay every 30 days. The stay is typically five nights, but the patient and family can choose to use less nights if desired. This break may, in some cases, mean the difference between the patient remaining in his or her home or requiring Long Term Care placement. Respite allows the caregiver to make a trip out of town to visit friends or family. Or, arrange to go to an out of town wedding, baptism, have that minimally invasive surgery, or make that medical or dental visit they have been putting off.

The patient is cared for in a facility at one of various locations in our service area. The care offered is 24 hours per day and nursing staff is available at all times. The Hospice team will continue to visit the patient during the respite stay. The patient is free to participate in activities of his or her choosing while there, and may even be able to get a haircut or attend church. The patient then returns home after the respite stay.

What should a patient bring to a respite stay? (Always check with a nurse as each facility’s rules differ.)

  • All current medications
  • Adult incontinence products
  • Oxygen concentrator and tubing
  • Catheter supplies
  • Feeding tube supplies
  • Blood sugar monitor and test strips
  • Wound dressing supplies
  • Nebulizer medications and equipment
  • Personal clothing, robe, slippers
  • Tooth care items, razor and other personal hygiene products
  • Any other items that may make the respite stay more familiar and comfortable

The Hospice social worker will be able to answer questions and help facilitate admission for a respite stay. For more information on respite care or any other questions you may have please call our toll free number 800-237-4629.

Judith Peterson is a clinical coordinator at Hospice of the Red River Valley.

Why I Volunteer for Hospice

Hilde van GijsselBy Hilde van Gijssel, Hospice of the Red River Valley volunteer

I believe in living life to its fullest, to make every day worth living. At the same time, I believe there is only one sure thing in life and that is I will die someday. I hope that day will not come for a long time. I am not afraid of dying. If I die tomorrow, I know I have lived my life well. My funeral should be a celebration, where I hope many people will have pleasant memories to share and stories to tell.

I am afraid of one thing though, dying in a hospital hooked up to machines totally outside of my control. I believe in dying with dignity. I believe we have the right to make choices about the last part of our lives. These are bold statements, and may make people uncomfortable. I apologize for that, but at the same time, this point of view is an essential part of who I am as a person and of my spirituality. This point of view influenced my decision to be a volunteer with Hospice of the Red River Valley. I believe Hospice does things the right way concerning end-of-life. Hospice puts people in control of the last phase of their lives. When my time comes, I want to be cared for by Hospice.

For me it is an honor to be involved with Hospice and a truly spiritual experience. It is an honor to be accepted into people’s lives during a very emotional and difficult time. It is an honor to be part of a team making the wishes of the patient and family come true. To provide valuable care to the patients and their families is always rewarding. Interestingly, it is not the very complicated or difficult tasks I do that are most rewarding. Most of the time, doing something simple, like sitting with a person so his or her loved one can run an errand, makes my day. Or maybe grocery shopping, cleaning out the refrigerator or taking a patient’s dog out for a walk. Anything that makes the life of the patient more comfortable, or less stressful, is worth it.

I started volunteering with Hospice as a patient volunteer, then soon participated as a pathway volunteer. Recently, I had the opportunity to be a public relations volunteer and also truly enjoyed it; it must be the teacher in me! I really enjoy educating people about Hospice and the opportunities it provides for loved ones. I hear many misconceptions about what hospice care is, so I see it as my personal mission to educate people about the true mission of Hospice. It is rewarding to see people change their minds and have a positive experience. I believe in the mission of Hospice and that is why I volunteer and hope to do so for a very long time.

If you are interested in volunteering with Hospice of the Red River Valley, or would like more information regarding volunteer opportunites, visit the website or call (800) 237-4629.

Hilde van Gijssel has been a volunteer with Hospice of the Red River Valley for more than 5 years. Hilde is an associate professor of science at Valley City State University.

The Medicare Hospice Benefit Explained

Wanda PoehlsBy Wanda Poehls

Congress established the Medicare Hospice Benefit in 1983 to ensure that all Medicare beneficiaries could access high-quality end-of-life care. Today, more than 65 percent of hospice patients are Medicare beneficiaries. The Medicare Hospice Benefit offers dying Americans the option to experience death free of pain, with emotional and spiritual support for both themselves and their families.

Care that patients receive under the Medicare Hospice Benefit for their terminal illness must be from a Medicare-approved hospice program. Hospice of the Red River Valley is Medicare certified and licensed in both Minnesota and North Dakota. Often, we hear questions about the Medicare Hospice Benefit:

Who qualifies for hospice care under Medicare?
To be eligible to elect hospice care under Medicare, an individual must meet all of the following:

  • He/she is eligible for Medicare Part A.
  • He/she has a life expectancy of six months or less if the disease runs its normal course.
  • He/she has chosen hospice care instead of other Medicare-covered benefits.
  • He/she gets care from a Medicare-certified hospice.

What is covered under the Medicare Hospice Benefit?
The Medicare Hospice Benefit pays all expenses related to hospice care, including:

  • Hospice services, including medical, emotional, spiritual care
  • Medical equipment and supplies
  • Medications for pain and symptom control related to the terminal illness
  • Physical therapy, occupational therapy, speech and dietary consultations
  • Grief support for 13 months after the death
  • Short-term inpatient care
  • Short-term respite care

Note: Hospice of the Red River Valley waives fees related to prescriptions or inpatient respite care outlined in the Benefit. Medicare payments to hospice do not interfere with Medicare payments for other illnesses or conditions.

What will Medicare NOT pay for?
The following is not covered under the Medicare Hospice Benefit:

  • Any treatment intended to cure your illness
  • Prescription drugs needed for other than pain and symptom management
  • Room and board
  • Care from any other provider*
  • Care in the emergency room*
  • Care in an inpatient facility*
  • Ambulance transportation*
    *Unless pre-approved by the hospice team

How are hospice services paid for by Medicare?
Hospice is reimbursed by Medicare at a per diem (daily) rate that is determined by where the patient resides and the level of care required (routine home care, continuous/concentrated home care, general inpatient and inpatient respite. Hospice receives the payment directly from Medicare.

Medicare and insurance can be complicated. No matter what your payment source, our insurance specialist will contact your insurance company to ensure you receive the benefits to which you are entitled. With Hospice of the Red River Valley, no patient is denied services due to an inability to pay; we provide services to anyone who meets the medical guidelines for hospice care.

For more information about the Medicare Hospice Benefit, watch our webinar on this topic. For answers to questions about your specific situation, please contact us at 1-800-237-4629 or questions@hrrv.org.

Wanda Poehls joined Hospice of the Red River Valley in 1986, and is currently the director of administrative services. What she appreciates most about her position is knowing that her work in the office supports the mission of the agency.

Common Sense and a Little Grace to HELP Hospice

Susan Fuglie, Executive Director Hospice of the Red River ValleyBy Susan Fuglie

Does one voice on Capitol Hill matter?

When you are a North Dakota delegation of one, stepping off a loaded bus amidst a parking lot filled with loaded buses, you have to wonder. This was me, in late March, merging with my hospice colleagues into the steady stream of dark business suits, brief cases, rapid paces and protesters headed toward the Supreme Court on the sidewalks of The Hill.

Armed with pertinent information from the National Hospice and Palliative Care Organization, I entered the offices of Congressman Rick Berg and Senators John Hoeven and Kent Conrad to plead our hospice case.

In spite of all the political and health care-specific turmoil, I was not surprised to be well-received. The hospice mission, after all, touches so many lives. I had the privilege of meeting with the remarkably bright and informed staff people who carry health care portfolios for their respective congressmen. These people are a vital link between us and the congressmen, who—being human—must rely on at least some help to keep pertinent issues in front of them. The time, attentiveness, substantive dialogue and, in one instance, tears from these individuals assured me that hospice matters to them and to our congressmen.

This is no time to ask Congress for more money. Wisely, this was not the purpose behind hospice representatives storming The Hill in late March. Rather, we were collectively asking for some grace and common sense in how the future of hospice is approached in health care reform, as inevitable change occurs. This is a message congressmen can get behind—and I believe they will.

Still, I was a voice of one. So, rather than telling you about some particularly unusual protests occurring on the Capitol lawn, describing the exquisite tulip beds on the grounds, or even getting into the details of our hospice “asks,” I am inviting you to raise YOUR voice on behalf of hospice care in America. Your voice, you see, is not only added to mine, it is more important than mine. Certainly, people on The Hill expect to hear from me; it is part of my job. But, YOU? You truly are the constituents from whom our congressmen want to hear. Do YOU value hospice care? Has it touched YOU or people for whom YOU care? Is the service important enough to protect into the future? Are rural residents as deserving of hospice care as those in our larger communities? If so, SPEAK UP!

Your voice has probably never mattered more to the hospice movement as it does right now. Changes in health care have to be made. Certainly, all of us as consumers realize this. Hospice of the Red River has been proactively making organizational changes for years, recognizing the inevitable. But unreasonable, unfunded mandates and disproportionate rate cuts will bring us to our knees. All we ask is for common sense and grace. And then, our collective passion for the hospice mission will survive the present turmoil. Just some common sense and a little grace.

I invite you to learn more about the HELP Hospice Act. Or, to learn more about what you can do to help, visit the Hospice Action Network. For more information about Hospice of the Red River Valley, visit our website or call 1-800-237-4629.

Please, raise your voice in support of hospice care. You WILL be heard—your voice matters!

Susan Fuglie is the executive director of Hospice of the Red River Valley.

Three Ways You Can HELP Hospice Care

Today is Hill Day 2012, and we’re asking Congress to HELP Hospice! In Washington, D.C. today, hospice advocates from around the country are meeting members of Congress to educate them on the challenges faced by community hospice organizations. Specifically, they are addressing the HELP Hospice bill. Even though you may not be in Washington, D.C., you can significantly add to the impact of this national effort by participating.

There are many ways to engage your political representatives and encourage policies that sustain and enhance access to hospice care.

  1. Contact your U.S. Representative and/or State legislators. Tell them you support the HELP Hospice Bill, and they should too.
  2. Write a letter in support of the HELP Hospice Bill to the editor of your local paper.
  3. Tell a friend.

Make your voice heard in support of hospice care. For more information about Hospice of the Red River Valley, visit our website or call (800) 237-4629.

Hospice Social Workers: Providing Support to Patients and Families

In honor of Social Worker Month in March, this post celebrates and recognizes the role of a hospice social worker. Our social workers focus on the individual needs of each patient and his or her family. The work they do varies in each setting, with each patient and within each family. They also have great knowledge and expertise in caregiving.

When the unthinkable happens and people are thrust into caregiving roles, they can’t help but be life changing experiences. Caregiving can bring out the best and worst in people. But, after the initial shock and disbelief settle, most caregivers find the strength within to get through physical and emotional challenges that come with caring for a loved one, and do so with grace and humor. We’re here to provide support for caregivers during what can be a very stressful time.

We frequently hear from patients at their family members, “We had no idea how much hospice could do.” The below illustrates how our social workers assist patients and their families. Learn more about the full breadth of hospice services.


What do hospice social workers do?
Hospice of the Red River Valley social workers are trained to assist patients and their caregivers during the end of life journey, and help in countless tangible and intangible ways. Here’s a sampling of how they provide support:

  • Assist patients in exploring non-medical ways of relieving pain and anxiety.
  • Assist patients in developing an individualized plan of care.
  • Educate a patient’s family so they may feel confident in their roles as caregivers.
  • Provide patients and their caregivers with advanced directives.
  • Allow patients and their families to discuss their concerns and fears openly and without judgment.
  • Identify community services that fit each individual situation, and assist with setting up services, such as meals on wheels, lifeline, and others.
  • Assist patients and caregivers in meeting their goals.
  • Help develop a plan if the patient is unable to be alone.
  • Keep family updated on a patient’s current status.
  • Provide caregivers with reading materials to support their role, including information to help them feel prepared for the time of death.
  • Guide patients in a transition from one living environment to another, or assist with facility placement.
  • Help patients and caregivers obtain financial assistance or resources.
  • Watch for and assist with safety concerns in a patient’s home.
  • Help fill gaps between what a patient needs and what is available to him or her.
  • Advocate for patients’ needs.
  • Help patients and caregivers understand the role of hospice and the hospice team.
  • Assist caregivers in finding support to maximize their strengths.
  • Help caregivers develop a plan for the time of death.
  • Provide age appropriate education and interventions to minor children.
  • Provide activities for children to allow them to express their feelings.
  • Offer patients and caregivers all of the information related to their care.

If you have questions about the role of a hospice social worker, or about hospice care, visit our website or call (800)237-4629.

Top 8 Hospice Care Myths

Hospice care is a set of specialty services designed specifically for individuals with late-stage illnesses and their loved ones, and includes medical, emotional, spiritual and grief support. Despite its many advantages, for both patients and their families, hospice is widely misunderstood. More often than not, hospice is synonymous with death, when in reality, its purpose is to enhance life.

Below are the 8 most common myths about hospice care and the facts:

Myth #1: Hospice care is only for cancer patients.

Fact: Hospice care is for anyone with a late-stage illness, including Alzheimer’s, dementia, heart and lung diseases, renal failure, AIDS, and many other life-limiting diseases.

Myth #2: Hospice care is only for the elderly.

Fact: Hospice is for people of all ages—from infants to the elderly—who have a life expectancy of six months or less if the illness runs its normal course.

Myth #3: Hospice care is only provided in a home.

Fact: Hospice is provided in nursing homes, hospitals, assisted living facilities—anywhere an individual calls “home.”

Myth #4: Hospice care is expensive.

Fact: Hospice services—including medication and equipment related to the terminal diagnosis—are completely covered under the Medicare/Medicaid Hospice Benefit. Most private insurance carriers also offer a hospice benefit. Medications not related to the terminal diagnosis are the patient’s responsibility. Deductibles, co-pays and spend-downs are also the patient’s responsibility. Care and services from Hospice of the Red River Valley are provided to everyone who needs them, regardless of insurance coverage or ability to pay.

Myth #5: Hospice is for the last days of life.

Fact: Patients and families benefit most when hospice services are begun as soon as an individual learns of his or her terminal diagnosis. Hospice care, at any stage, but particularly early on, can significantly lighten the burden.

Myth #6: Hospice workers are all volunteers.

Fact: While trained volunteers may provide assistance to patients and families, the actual care is provided by highly specialized professional staff, including registered nurses, certified nursing assistants, social workers, chaplains and grief specialists.

Myth #7: Hospice is for people who have “no hope.”

Fact: Choosing hospice does not mean death is imminent. Hospice care neither hastens death nor prolongs life. With Hospice, the miracle isn’t the cure, it is in the caring. The Hospice team members are pain and symptom management experts. They provide support and pain relief so families can share quality time and meaningful, dignified, peaceful end-of-life experiences.

Myth #8: You can’t contact Hospice until your physician suggests hospice care.

Fact: Anyone may call at any time to learn about Hospice’s services at no obligation. A physician’s order is ultimately required for admission to the Hospice program.

To learn more about Hospice, contact us at 800-237-4629 or questions@hrrv.org.

30 Years of Compassionate End-of-Life Care

2011 marked 30 years of compassionate end-of-life care provided by Hospice of the Red River Valley throughout eastern North Dakota and northwestern Minnesota. As we begin 2012, we remember our roots with nostalgia and pride, and reflect on the values embraced by our early dreamers and believers—respect for the dignity of people, belief in the quality of life, a willingness to serve and a commitment to caring.

To celebrate 30 years, a collection of stories have been written about our earliest days, cherished memories, community supporters and those who have sustained the organization. We hope you’ll enjoy this collection:

In the Beginning: Staff Memories of Hospice’s Earliest Days
Hospice of the Red River Valley has fulfilled a vital need for dignified, compassionate end-of-life care since its inception 30 years ago. Several staff members have served the organization since its earliest years. Together, they reflect on the changes along the way and the memories they’ve shared as Hospice of the Red River Valley established a reputation for excellence. Read more. 

Pursuing Our Vision of Hospice
Personal experience was the driving force that prompted Dr. Campbell, a physician in Sanford’s Family Practice Department, to become an enthusiastic board member and medical director during Hospice of the Red River Valley’s early days. Read more. 

A Dream More Than Realized
Thirty years ago, a group of visionaries in Fargo, N.D. decided to make their dreams a reality by founding one of the first hospice programs in the region. Co-founder Joy Query recently shared the story of the organization’s grassroots’ beginnings. Read more.

Celebrating 30 Years of Fundraising Events: Pat Maris
Funds raised through special events have played a pivotal role in keeping hospice care available and accessible for the past 30 years. The Roger Maris Celebrity Golf Tournament is one of the longest-standing sources of financial support. Pat Maris, Roger’s widow, recently reflected on the tournament’s beginnings, and the family’s decision to support the work of Hospice of the Red River Valley. Read more. 

Celebrating 30 Years of Hospice Volunteers
Volunteers were critical to the inception of Hospice of the Red River Valley 30 years ago. Today, more than 500 volunteers share their time and kindness with patients and their families. Three of these volunteers— Leona, Gayle and Arlene—have served the organization since its earliest years. During their 56 years of combined volunteer service, they have spent thousands of hours providing companionship and caregiver relief to dozens of patients and families. Read more.

We have been honored to serve the Red River Valley for 30 years. Thank you to the thousands of donors and family members and the hundreds of staff and volunteers who have made this care possible through their support, trust, good will, plain hard work and the desire to do the right thing for individuals seeking peace and comfort at the end of life’s journey.

Do you have memories of your connection to Hospice of the Red River Valley over the past three decades? Please share your story with us through the comments feature.

Happy New Year!

Hospice Care: One Family’s Experience

With the support of Hospice of the Red River Valley, Bob and his daughters were able to care for their wife and mother at home during her final months. In this video, Bob and his granddaughter, Cari, share memories of their experience with Hospice and what it meant to their family.

To read more about Bob and his family’s story, click here.

If you have questions about how your loved one or family could benefit from hospice care, give us a call at (800) 237-4629 or email questions@hrrv.org.