Oct 20

Dying In America Is Harder Than It Has To Be, IOM Says

stethoscopeBy Jenny Gold, Kaiser Health News Staff Writer

It is time for conversations about death to become a part of life.

That is one of the themes of a 500-page report, titled “Dying In America,” released by the Institute of Medicine.

The report suggests that the first end-of-life conversation could coincide with a cherished American milestone: getting a driver’s license at 16, the first time a person weighs what it means to be an organ donor. Follow-up conversations with a counselor, nurse or social worker should come at other points early in life, such as turning 18 or getting married. The idea, according to the IOM, is to “help normalize the advance care planning process by starting it early, to identify a health care agent, and to obtain guidance in the event of a rare catastrophic event.”

The IOM plans to spend the next year holding meetings around the country to spark conversations about the report’s findings and recommendations. ”The time is now for our nation to develop a modernized end-of-life care system,” said Dr. Victor Dzau, president of the IOM.

The 21-member IOM committee that authored the report grappled with the fact that most Americans have not documented their wishes for end-of-life care. A national survey in 2013 found that 90 percent of Americans believed it was important to have end-of-life care discussions with their families, yet less than 30 percent had done so. Those who have had the discussions tend to be white, higher-income, over 65, and have one or more chronic condition.

In response to these statistics, the IOM offers a new “life-cycle model of advance care planning” that envisions people having regular planning conversations as part of their primary care, and at the diagnosis of any chronic illnesses or genetic conditions. The conversation would continue at various turning points of a disease, when spiritual counseling might be offered, and then again in the final year of expected life.

The report also found that the American health care system is poorly equipped to care for patients at the end of life.  Despite efforts to improve access to hospice and palliative care over the past decade, the committee identified major gaps, including a shortage of doctors proficient in palliative care, reluctance among providers to have direct and honest conversations about end-of-life issues, and inadequate financial and organizational support for the needs of ailing and dying patients.

“We all share in common one reality: We’re all going to die,” said Dr. Philip Pizzo, co-chair of the committee, at the public release of the report Wednesday. “We have the ability to accomplish [a strong end-of-life care system], but we have a long way to go.”

Just talking about death and dying can ignite fear and controversy: Five years ago, the health law’s proposal for Medicare to reimburse doctors for counseling patients about living wills and advance directives became a rallying cry for Republican opponents of the law who warned about so-called “death panels.” The reimbursement provision was removed from the Affordable Care Act before it passed.

The IOM argues that the country cannot afford to wait any longer to have a less heated conversation, especially as the number of elderly Americans continues to grow with the aging of the baby boom generation.

“At a time when public leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better, and promote a reasoned and respectful public discourse on the subject,” write Dzau and Dr. Harvey Fineberg, the former president of the IOM, in a forward.

The report also addresses how to make palliative care – care that focuses on quality of life and pain control for people with serious illnesses – more prevalent and available to all patients.

Over the past decade, palliative medicine has become a widespread specialty.  But while 85 percent of hospitals with more than 300 beds now have palliative care services, many patients still may not have access to a specialist, including those who are not hospitalized or who live in rural areas.

To address the shortage, the committee writes, all clinicians regardless of specialty “should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management.” Medical schools are currently required to cover end-of-life care as part of their curriculum, but they offer an average of just 17 hours of training over all four years. And end-of-life care is not one of the crucial 15 topic areas for Step 3 of the medical licensing exams, the final step to becoming a practicing physician.

The committee calls for medical schools, accrediting boards and state regulatory agencies to bolster their end-of-life training and certification requirements.

Some private insurance plans have already started adopting some of the practices recommended in the report. “It’s not entirely altruistic,” said David Walker, co-chair of the committee. Private payers have the data to know that palliative and hospice care can save money at the end of life.

The IOM is an influential body that is the health arm of the National Academy of Sciences. Its mandate is to provide objective information to advise the public and policy makers. IOM reports are sometimes undertaken at the request of Congress, which can also fund the work. “Dying in America” was funded privately, however, by “a public-spirited donor” who wishes to remain anonymous, according to Dzau and Fineberg.

This article was produced by Kaiser Health News with support from The SCAN Foundation.

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.

Upcoming Event
The 11th Annual Fargo-Moorhead Caregiver Conference, “The Fearless Caregiver,” will be held this Wednesday, Oct. 22, 2014, at the Hjemkomst Center located at 202 1st Ave. N. in Moorhead, Minn. The half-day seminar begins at 9 a.m. A light brunch will be served.

The conference features expert panelists on variety of caregiving topics. Additionally, “The Caregiver Bill of Rights” will be presented by Sharon Dardis, RN, BSN, author and board member of the Minnesota Coalition for Death Education and Support.

The conference will close with light chair yoga led by a trained yoga instructor. Area vendors will also be onsite during the event. The event is free and open to the public, but registration is required. For questions or to register, please call Julie Marxen at (218) 299-5514. Click to download and print an 11th Annual Fargo-Moorhead Caregiver Conference agenda/registration form.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/10/20/dying-in-america-is-harder-than-it-has-to-be-iom-says/

Oct 07

True Grit: Patient Celebrates a Year on Hospice Care

Duane_1For 365 days, Duane, Hospice of the Red River Valley patient, has received hospice care in his home, with his beloved wife, JoAnn, by his side. Each day is an adventure that Duane has met with true grit, gratitude and a little humor.

A year ago, Duane left the hospital for the last time with a three-week prognosis. His persistent heart issues led to a pattern of hospital stays, a string of discharges, ambulance rides and numerous re-admissions. “When they told me I only had three weeks left, I was out of this world,” Duane described. “At the hospital, they told me I wouldn’t return home, and that was hard.”

After these experiences and the prognosis of three weeks to live, Duane told his family, “No more,” and he called Hospice of the Red River Valley. “I was looking for some help, and Hospice provided it,” Duane said. “I didn’t want my family to have to worry about me, especially my wife.”

With such a short amount of time left, Duane was determined to get all his personal affairs in order, including finances and insurance. “I drove my daughter nuts to get everything done,” he said. “I even sent her to the funeral home to make arrangements.”

Robyn, Hospice of the Red River Valley social work

er, helped Duane appoint his daughter as power of attorney. Robyn also assisted the couple in creating living wills, which was a pleasant surprise for Duane. “I didn’t know Hospice could help with so many things,” he said. “It was such a relief, and now, I feel good knowing that everything is taken care of.”

In addition to helping with his personal affairs, Hospice staff worked immediately to simplify Duane’s medications. “I’m happy to say I’m off most of the medications I was taking before I was on hospice,” Duane explained. “Every week Hospice comes in to take a look at my meds. It is a great, great feeling knowing a nurse is going to check in with us.”

Duane and Jerry

Duane with Hospice CNA, Jerry.

Duane is most grateful for the attentive care provided by his hospice certified nursing assistant (CNA), Jerry. “When Jerry started coming to the house, I started receiving showers consistently and more trips to the bathroom, but most importantly, he helped me regain my strength,” Duane said. “We’ve walked up and down these halls, many times.” With each careful stride of the 162-step journey, Duane and Jerry grow closer, talking about movies, their mutual affinity for John Wayne and life.

“It’s been a great relationship with Jerry; we’ve had a lot of good times,” Duane explained. “He’s been as nice to me as any person can be. There’s a lot of bologna passed between us.” “I think that has added a lot to my recovery, because I don’t even think about my heart problems when we’re visiting,” he said.

Jerry has developed a mutual fondness for Duane, as well. “I look forward to seeing him,” Jerry said. “He’s a great guy with a zest for life and a good attitude, no matter what he faces.” “I think Duane is a hospice success story because he’s chosen to utilize all of the services hospice can offer to him.”

Hospice of the Red River Valley Nurse Practitioner Michelle echoes Jerry’s feelings. “Duane is such a delight,” she said. “I think his embrace of hospice care has contributed to how well he’s done under our care. He’s really taking full advantage of everything hospice care offers. A lot of people don’t have the chance to celebrate a one-year anniversary on hospice care.”

Duane_2This past year has also offered Duane more moments to celebrate with his family—his 80th birthday, another Thanksgiving, Christmas and his 57th wedding anniversary. He doesn’t take this time on hospice care lightly, or what it’s meant to him. “I’m alive, and I truly believe I wouldn’t be here without Hospice,” he said. “Hospice takes care of you spiritually, medically and also offers friendship. It makes a difference when you’ve got somebody who cares; that does something for your heart.”

Despite outliving his original prognosis, Duane’s health continues to slowly decline, which makes him still eligible for hospice care. A member of Hospice’s medical team must regularly visit Duane to re-certify that he still meets the medical guidelines for care.

“Everyone who has come to our home from Hospice—Jerry, Robyn, Michelle, Tom—has a genuine interest in helping me; I appreciate that,” Duane shared. “I can’t emphasize what I think about hospice enough. I don’t care what anyone else says. My experience with hospice has been great.”

Upcoming Event
The 11th Annual Fargo-Moorhead Caregiver Conference, “The Fearless Caregiver,” will be held on Wednesday, Oct. 22, 2014, at the Hjemkomst Center located at 202 1st Ave. N. in Moorhead, Minn. The half-day seminar begins at 9 a.m. A light brunch will be served.

The conference features expert panelists on variety of caregiving topics. Additionally, “The Caregiver Bill of Rights” will be presented by Sharon Dardis, RN, BSN, author and board member of the Minnesota Coalition for Death Education and Support.

The conference will close with light chair yoga led by a trained yoga instructor. Area vendors will also be onsite during the event. The event is free and open to the public, but registration is required by Oct. 15. For questions or to register, please call Julie Marxen at (218) 299-5514.

Click to download and print an 11th Annual Fargo-Moorhead Caregiver Conference agenda/registration form.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/10/07/true-grit-patient-celebrates-a-year-on-hospice-care/

Sep 23

Hospice Youth Journeys: Helping Kids Navigate through Grief & Uncertainty

Youth JourneysThrough creativity and imagery, Hospice of the Red River Valley Chaplain Tom Holtey shapes a safe and warm environment for youth to explore their grief emotions during Youth Journeys, a day-long grief workshop offered by Hospice of the Red River Valley for young people, ages 6-18, who have experienced the death of a loved one.

“I’ve been with Hospice for almost nine years now. During this time, I’ve discovered I need weekly group reflection, and daily personal reflection, to process my thoughts and feelings,” Holtey explained. “I believe reflections on thoughts and feelings—in a more physical way—can be a great way for youth to express their emotions, too.”

The Labyrinth
For many, the thought of reflecting on your thoughts and feelings might sound boring, especially for children. But at Youth Journeys, Holtey used a labyrinth—an elaborate combination of paths—that children walked on, or a finger labyrinth. He said, it’s helpful, and can be fun, for children of different ages and personalities to process their thoughts and feelings in a group setting and in individual ways.

“The labyrinth’s roots, in a large sense, can be traced back to hospice because hospices were places of rest for pilgrims traveling to the Holy Land,” Holtey explained. “For people unable to make the pilgrimage, a labyrinth was built in Chartres, France, at the Cathedral, to simulate the journey. I love that labyrinths have this hospice connection.” 

In addition to his personal life, Holtey has put labyrinths to good use in previous positions where he worked with youth as a camp director and pastor. “I’ve used it [labyrinth] to help redirect the energy of active kids and provide a connectedness, while harnessing creativity at the same time,” he shared. Whether he combines his musical talents—singing and playing instruments—while children march along the labyrinth, or they simply sit in a circle around it, Holtey finds this tool resonates with young people.

Youth Journeys
“All of the chaplains at Hospice of the Red River Valley are always looking for ways to assess and track the needs of those we work with,” he explained. “Using a labyrinth to help express emotions seemed like a natural fit for use at Youth Journeys,” he explained.

Youth Journeys_labyrinth-collageDuring last spring’s Youth Journeys, held in April, Holtey used a very large labyrinth “map” that covered the floor to engage and interact with youth, ranging from grade school to high school age. “I wanted to create a comfortable place where kids could be themselves and participate at their own pace,” he said. “I also wanted to create a foundation for the Hospice social workers and bereavement specialists who worked with the kids later in the day.”

Holtey encouraged participants to walk around the labyrinth at a pace comfortable to them. “I sat down in the middle of the labyrinth, and invited the kids to take a seat anywhere on it,” he described. “I expected them to either sit near the edge of it or not at all. And surprisingly, almost everybody immediately came right to the center.”

While the kids claimed their spot on the labyrinth, Holtey played his ukulele and gently discussed different emotions and how there are times we feel happy and other times we do not, and it’s OK to be yourself. “Similar to the different stages of grief, there’s no rule on what you should be feeling, and just because someone else is feeling a certain way, doesn’t mean you have to as well,” Holtey described. “A sense of community started to develop as kids began interacting with me and each other. You have your own space on the labyrinth, yet you are together.”

The conversation continued to flow into discussions about finding meaning in life’s events and how everyone has their own way of looking at and dealing with experiences based on his or her own system of values. “I wanted to convey the message that however each person handled the grief and loss of a loved one, it was OK and not a reflection on how much we loved the person who passed away,” he said.

As the group’s talk evolved, Holtey used a handout depicting a finger labyrinth and using feeling and thinking words to help assess the needs of each participant. “We talked about wellness and the different types: physical and spiritual,” he said. “And, how we [Hospice staff] wanted this to be a safe place for each child to share and feel.”

 The labyrinth activity helped set the tone—a comfortable environment where it’s OK to cry, smile and even laugh—and guidelines for the rest of the day, while providing a tangible metaphor for the grief journey. It is just one example of the types of activities that take place at Youth Journeys.

Looking Ahead
From season-to-season, the activities at Youth Journeys may change and evolve, but the dedication to helping youth explore and work through grief remains the same. “Youth Journeys is really all about kids; they get to be with peers and hear their stories,” Holtey said. “And our [Hospice’s] grief team is so good and in-tune with kids. They provide them with a safe place to be wherever they are in the grief process. It’s wonderful.”

Hospice of the Red River Valley will again offer Youth Journeys this fall on Saturday, October 4. Portions of the day will include parent/guardian participation. For more information about Youth Journeys, or to register, contact us at (800) 237-4629 or email questions@hrrv.org. Pre-registration is required by Monday, Sept. 29, 2014.

Youth Journeys is just one of many grief-related offerings that Hospice of the Red River Valley provides to our communities. In addition to this workshop, we also have support groups and classes, a grief resource library and an annual conference. If you or someone you know could benefit from grief support and resources, please contact us.

Tom Holtey has been working as a chaplain at Hospice of the Red River Valley for nine years.

In addition to grief support groups, Hospice of the Red River Valleys offers a number of classes, workshops and a conference in the fall. Please visit our website for more information about these upcoming opportunities.

Upcoming Event
Tonight, Tuesday, Sept. 23 from 7-9 p.m., we are pleased to offer a FREE community event as part of our Journeying Home Conference. Douglas C. Smith, professional speaker, trainer, consultant and counselor, will present “Different Styles of Grieving, Different Styles of Healing.” Participants will explore different ways of grieving and ways to navigate grief and loss. The event will take place at Ramada Plaza & Suites, 1635 42nd St. S., Fargo, N.D. It is free and open to the public, no registration required and no CEUs provided. The event is sponsored in part by Forum Communications, Gate City Bank, Ramada Plaza & Suites and Enventis Foundation.

Smith has worked in hospitals, hospices and social service agencies. He is the author of several books, including The Tao of Dying, Caregiving: Hospice-Proven Techniques For Healing Body And Soul, Being A Wounded Healer and The Complete Book Of Counseling The Dying And The Grieving. He also has much experiential knowledge in the fields of terminal illness and grieving.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/09/23/hospice-youth-journeys-helping-kids-navigate-through-grief-uncertainty/

Sep 18

Hospice Hosts Journeying Home Conference Sept. 23-24!

Journeying Home 2014At Hospice of the Red River Valley, we’re committed to providing quality end-of-life care and education, including grief support and resources. We’re pleased to announce our annual Journeying Home Conference will take place Sept. 23-24, 2014, at the Ramada Plaza & Suites in Fargo.

The conference kicks off with a FREE community event on Tuesday, Sept. 23 from 7-9 p.m., open to the public with no registration required. Attendees will have the opportunity to learn from a professional speaker, counselor and expert on grief and loss, Douglas C. Smith. His inspiring and engaging presentation, “Different Styles of Grieving, Different Ways of Healing,” will help anyone who has experienced grief through his message of hope and healing. Participants will also have the chance to quietly reflect on their losses and honor their unique grief journeys.

On Wednesday, Sept. 24, health care professionals are invited to attend the daylong educational event. Smith will present, “Ethical and Spiritual Issues in End-of-Life Care.” Continuing education units/hours available at this program are 6.5 social work CEUs and 5.75 contact hours for nurses.* Registration is required for this portion of the conference. The conference fee is $99. Click here to register.

Please join us, and let others know about these events. For details, visit www.hrrv.org/journeyinghome or call (800) 237-4629.

About the Presenter
Douglas C. Smith is a professional speaker, trainer, consultant, counselor and expert on grief and loss. He has worked in hospitals, hospices, and social service agencies. He is the author of several books, including The Tao Of Dying, Caregiving: Hospice-Proven Techniques For Healing Body And Soul, Being A Wounded Healer, and The Complete Book Of Counseling The Dying And The Grieving. He also has much experiential knowledge in the fields of terminal illness and grieving, having lost to death a brother and two daughters.

*Hospice of the Red River Valley is an approved provider for continuing education for social workers in North Dakota. This continuing nursing education activity has been approved by the Arizona Nurses’ Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/09/18/hospice-hosts-journeying-home-conference-sept-23-24/

Sep 09

Loose Ends

Karin MobergBy Chaplain Karin Moberg

In the last year of Mom’s life she had become increasingly confined because of emphysema and COPD, until eventually she was living what we call in hospice, a “bed-to-chair” existence. Her oxygen tubing was long enough to stretch across her small one room apartment, while her nebulizer and inhalers sat on her end table within arm’s reach of her favorite chair.

She spent hours in her big, red floral patterned, antique winged-back chair—reading, watching the San Diego Padres, playing with her cat named Blue and crocheting.
Crocheting was probably her preferred form of handwork. It seemed like the click of the needles, soothed her similar to a mantra, calming her anxiety and easing her breathing. I wonder if this activity didn’t also enlarge her otherwise shrinking world by giving her a more expansive purpose, as she held one of her loved ones in mind with each new creation.

She took a certain pride in the notion that every completed piece had at least one mistake in it because nothing was perfect, insisting it was the imperfection that made a doily or afghan unique and special—compared to a factory-run product.

Her lovely flawed creations were special—not just because they were made by hand—but because they were made by her hand.

In the last week of her life, my brother Dave and I were going through her bags of unfinished projects. I thought of the 250 brown and cream granny squares I crocheted as a young adult—an afghan in the making. I kept that paper bag full of squares for years, thinking maybe someday I would finish it. I never did.

Mom’s impending death, like any, had a way of bringing unfinished business into focus, not by choice but by necessity.

As we sorted through a closet filled with all her homey but incomplete efforts, we discovered many loose ends. We didn’t want her precious work to unravel, so we asked her if she remembered how to tie up the ends.

My brother knelt in front of her holding one of her beautiful pineapple-patterned doilies in his hands. Mom was too weak, and her fingers would not cooperate. My brother said, “That’s ok, Mom; we’ll do it.”

In that tender failure, I experienced a fresh illumination of a larger truth. Since there is no perfect life—there is no perfect ending. We do the best we can, but something is always left hanging and unfinished; passed on to the next generation to complete or continue in its own way. In these thoughts, I felt strangely comforted and readied to carry on—as her daughter, and also as a hospice chaplain—encouraging and supporting patients and families in this final spiritual act of letting go.

That same night, in spite of the loose ends, Mom whispered, “I’m ready, I’m ready.”

And I knew what she meant.

Karin Moberg is a chaplain at Hospice of the Red River Valley.

About Hospice of the Red River Valley
Hospice of the Red River Valley is an independent, not-for-profit hospice serving all, or portions of, 29 counties in North Dakota and Minnesota. Hospice care is intensive comfort care that alleviates pain and suffering, enhancing the quality of life for patients with life-limiting illnesses and their loved ones by addressing their medical, emotional, spiritual and grief needs. For more information, call toll free 800-237-4629, email questions@hrrv.org or visit www.hrrv.org.

Upcoming Event
Hospice of the Red River Valley is pleased to offer the 2014 Journeying Home Conference, Sept. 23-24. Douglas C. Smith, professional speaker, trainer, consultant and counselor, will present “Different Styles of Grieving, Different Styles of Healing” during a FREE community event on Sept. 23 from 7-9 p.m. This portion of the conference is free and open to the public.

On Sept. 24 from 8:45 a.m. to 4 p.m., he will present “Ethical and Spiritual Issues in End-of-Life Care.” This event is for health care professionals, and registration is required. Conference fee is $89 on or before Sept. 15, and $99 after Sept. 15. Continuing education units/hours available at this program. Click here to register.

Smith has worked in hospitals, hospices and social service agencies. He is the author of several books, including The Tao of Dying, Caregiving: Hospice-Proven Techniques For Healing Body And Soul, Being A Wounded Healer and The Complete Book Of Counseling The Dying And The Grieving. He also has much experiential knowledge in the fields of terminal illness and grieving.

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/09/09/loose-ends/

Aug 26

Ride the Red for Hospice on September 13!

Ride the RedFlint Communications invites you to gather your friends and family and join us for the
14th Annual Ride the Red to benefit
 Hospice of the Red River Valley!

When
Saturday, Sept. 13, 2014
Registration opens at 9 a.m.; the bike ride begins at 9:30 a.m.

Where
This non-competitive bike ride begins and ends at Fargo’s Trefoil Park, located at 1321 Elm St. N. Participants will follow the Fargo-Moorhead Recreation Trail; the mid-point is Lindenwood Park. The route is approximately 13 miles.

Rain Date
Saturday, Sept. 20, same time, same place.

The fee to register is $25, and all proceeds directly benefit Hospice of the Red River Valley. Children 12 and under ride FREE with a paid adult. Register by August 30 to guarantee your free t-shirt! In addition to the bike ride, attendees will enjoy coffee and breakfast pastries, and a chance to win door prizes, including a new bike!

Registration
Click here to register online.

“Like” the Ride the Red Facebook page to see updates and the bike trail map. Invite your friends and family to join the event on Facebook, too!

We hope to see you there! Let’s Ride the Red!

 


 

 

 

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/08/26/ride-the-red-for-hospice-on-september-13/

Aug 12

Hospice Nurse Practitioner, On Compassion & Kindness

Michelle Cooley

Michelle Cooley, Hospice of the Red River Valley nurse practitioner

We are all the same inside, and we all have the same basic needs—no matter our culture, age or road to travel. It’s a simple sentiment, but one in which Michelle Cooley, Hospice of the Red River Valley nurse practitioner, lives to the “T.” As a mother of three, grandmother of two, former foster parent and international exchange student host family mother, Michelle understands acts of love, compassion and kindness are far more rewarding long-term than the initial benefits they reap.

“It’s always been my belief that we can make the world a better place by helping one child or one person at a time,” Michelle explained. “I want to help out any way I can.” The calling to make a difference resonates not only in Michelle’s personal life, but also in her career choice—nursing.

For more than 30 years, she worked in the Grand Forks health care system as a registered nurse, then a nurse practitioner. Additionally, Michelle worked as an assistant clinical professor at the North Dakota College of Nursing in Grand Forks during much of the same time. After having raised her children with her husband, Michelle made the move to hospice care a few months ago when she joined Hospice of the Red River Valley. “It’s always something I wanted to do,” she explained. “I want to be there to help patients live the fullest life possible until the end.”

In her new role, Michelle travels the more than 25,000 square miles that encompass Hospice of the Red River Valley’s service area for face-to-face visits with patients. She also works closely with Hospice’s medical director to collaborate on comfort and end-of-life care for patients and provides expert guidance to Hospice nursing staff regarding patient care.

“I feel I can make a difference in the lives of patients and their families by being caring, compassionate and supportive,” Michelle said. “We’re all going to be there some day, and no matter if it’s just something little, or a larger issue the patient faces, I want to advocate for them—and help be their voice.”

During her short time at Hospice, it’s become apparent to Michelle that Hospice is the perfect fit, because like her, the other Hospice staff she has met takes their work very seriously. “I can see through everyone I’ve met at Hospice so far—even during orientation—it’s all about the patient and family,” Michelle explained. “It’s not a job to them [hospice staff]; it’s their mission. It takes a special kind of person to work in end-of-life care.”

Based on the sum of her experiences in nursing and with Hospice so far, Michelle is thoroughly excited about the months to come as she becomes more immersed in her role, working closely with patients. “It’s [hospice care] a good reminder to really appreciate what you might otherwise take for granted,” she said. “Dying is such a natural part of living, and I want to make that experience as comfortable as possible for the patient and the patient’s family while advocating for both.”

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/08/12/hospice-nurse-practitioner-on-compassion-kindness/

Jul 29

Every Gift Counts: Donations to Hospice Patients Provide Immeasurable Support

Jane BartholomayBy Jane Bartholomay

If you knew you had just a few months left to laugh, love and live, how would you choose to spend your final days or weeks? For some faced with a terminal illness, the choice is clear—comfortably and surrounded by loved ones, which means accepting hospice care.

What services does Hospice provide?
When that decision is made—to transfer from curative care to comfort care—and Hospice of the Red River Valley becomes involved, the meaningful work of supporting that person’s end-of-life wishes takes form. A detailed, patient-specific plan of care is designed by a team of hospice care specialists, including a registered nurse (RN), licensed social worker, chaplain and volunteer coordinator. All services, equipment and medication related to the individual’s terminal diagnosis become a part of the compassionate, end-of-life care the person deserves.

In addition to caring for each patient, Hospice supports the patient’s family members through caregiver education—teaching caregivers how to provide direct care for their loved ones—and grief support services for up to 13 months after a death. Grief support is provided based on each person’s individual comfort level and may include one-on-one visits, phone calls and educational materials. Hospice of the Red River Valley also offers support groups open to the communities we serve.

Why does it matter?
We need you. While some of our services are reimbursed through Medicare, Medicaid or private insurance, Hospice of the Red River Valley cares for anyone who meets the medical guidelines for care, regardless of insurance coverage, ability to pay or distance from a major city. As a not-for-profit organization serving 29 counties in North Dakota and Minnesota, patients are cared for in the setting of their choice—wherever they call home, including private residences, assisted living facilities, nursing homes and hospitals.

In 2013, we cared for an average of 278 patients each day—many of whom resided in rural areas. Donations and community support make our work possible—ensuring everyone who qualifies for hospice has access to care that can lead to a more comfortable life and more moments with loved ones. Deliberate acts of generosity also provide much needed support for families during their most difficult times.

Every gift, your gift—no matter its size or form—provides immeasurable support for the care and aid of patients and their families throughout our service region, helping each person live the last months and weeks to the fullest surrounded by those who matter most.

How can I help?
Contributions to Hospice of the Red River Valley come in many forms, and all gifts to Hospice of the Red River Valley are tax deductible, as determined by the law.

There are so many types of gifts you can give:

We are often reminded of how the care provided during difficult times has touched the lives of those involved. Recently, we received this note from a family member whose mother was served by Hospice of the Red River Valley. “Thank you so much for the gentle and compassionate care given to our mother. Words cannot describe the depth of our gratitude. You were always there when we needed you.”

For more information on opportunities to support Hospice of the Red River Valley, please call (800) 237-4629, email or visit our website.

Jane Bartholomay is a development officer at Hospice of the Red River Valley.

 

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/07/29/every-gift-counts-donations-to-hospice-patients-provide-immeasurable-support/

Jul 15

Caregiving 101

Sharon Dardisby Sharon Dardis

Editor’s note: Hospice of the Red River Valley is fortunate to have wonderful guest bloggers contribute to our blog. This blog is written by Sharon Dardis, former Hospice of the Red River Valley employee, and republishing or reprinting any part of this article, The Caregiver Bill of Rights or Top 10 List is prohibited without prior written permission by the author, Sharon Dardis.

This story has a happy ending, and retelling it still feels like therapy. Four years ago, I was thrust into the role of caregiver for my husband who became suddenly, critically ill. I learned hard lessons about advocating and caregiving. Just a month short of retirement, and claiming he had no warning signs, Stan was struck with a serious bout of sepsis. He nearly died. Afterward, he said he thought his aches and pains were “pending retirement.” Since I’m a nurse, I felt somehow I’d failed him. I should have seen or suspected something. The next four months of my life as a caregiver began early in the morning of April 1, 2010, with a call to 911. When I called our kids later that day to say their dad was in ICU, our son asked, “April Fools, right, Mom?” 

Conscious Caregiver
As a nurse, I always thought I knew the ropes—navigating the maze of medical care with a loved one would be easier for me because of my experience. I seriously think it may have made the experience more difficult. Early on, a friend and fellow nurse suggested I keep a journal, recording not only my feelings but also information, names, lab results, appointments, who called, who said what, etc. It was good advice; it helped me to not feel completely out of control. (I still flip through it occasionally, reprocessing the experience.) But I think keeping a journal made the medical community nervous. There I sat, notebook in hand, pen poised as the latest specialist recounted the newest findings. It came in handy, and in several cases, was helpful, in Stan’s recovery (and my own mental stability). I also recorded my thoughts or things Stan said or did.

Recovery
We were lucky. After three different hospitals, a second ambulance ride, scans, massive antibiotics, and finally, major surgery, I took Stan home to recover with another two months of IVs and therapy. He had experienced good care. His recovery complete, he dove into his “new life,” suffering no ill effects. Today, he’s healthy and, like me, very, very grateful. 

He remembers little of those intense four months. Only a month into it, he did attend his retirement party. Fiercely proud and not wanting to go unless he could “stand tall and be coherent,” (but still in significant pain) his doctor commented, “You want both?” We stood together that day, addressing his guests with a short talk titled, “Top10 Things We Would Have Rather Not Learned This Month.” He let me help him prepare these short remarks, which was very much unlike him. It was not how he had planned his retirement send off. We took turns presenting; it felt surreal. It took another two months before Stan was fully himself again. Like all caregivers, I believe I came away with some hard lessons learned. 

Caregiver Bill of Rights
After a particularly bad day, I left Stan’s hospital room in tears; actually, I was hysterical. I knew I was exhausted and worried, but I was also frustrated and sad, and writing helped express my concerns. I pounded out my own “Caregiver Bill of Rights,” taking into account some of the experiences I had as the “responsible caregiver.” Stan was my husband; I was his advocate. It never felt easy and rereading what I’d written later, it was pretty clear. This kind of caregiving was complicated.

I suspect if every caregiver on the planet wrote their own bill of rights for caregivers, there would be as many different versions as there are people. Since each caregiving situation is different and every person is up against a unique set of problems, there are a million ways to approach the topic of the self-care and preservation of those who provide care to loved ones.

Google “Bill of Rights for Caregivers,” and you’ll find many affirming approaches to this proposition. Jo Horne presents a helpful list of reasons to believe caring for ones’ self is “not an act of selfishness.” She reminds us that to survive, we need to first take care of ourselves. Not knowing her story, nor who she might have cared for, I read between the lines. She understands, I suspect from experience, that to stay a strong and effective caregiver, one needs to take good care of oneself.

I think many of these well-worded and carefully constructed “documents,” meant to help instruct and support others in the art of caregiving, are born of personal trials; hard-won, hands-on, days, weeks, months, years of attending to those who need us. It’s never an easy road.

Sherri Snelling, CEO of Caregiving Club and author of “A Cast of Caregivers” has another version, one that speaks not only to self-care and preservation but also beyond, to what to we should be able to expect from the health care team, employers, our family and friends, as well as public, private and even national resources. 

You’re Not Alone
I never dreamt I’d be in a situation that would prompt me to craft my own Caregiver Bill of Rights. I suppose it’s like writing a letter in a fit of passion; sometimes it’s better to wait before you send it out or maybe never send it at all, tear it up or bury it in some drawer. But in my case, my own Caregiver Bill of Rights was written just as I came to the end of my rope. Tears streaming down my face, I was forced to admit, even though I was a nurse, or maybe because I was, I felt powerless and exhausted. Once I pounded out my thoughts, took a breath and thought about it, it felt good. I felt better. I suspect I’m not alone. 

What follows is what I wished for as a caregiver; my own Caregiver Bill of Rights. Rereading it, I think what I wanted most was to be heard and acknowledged. I’ve left my version mostly unedited, as a reminder of that difficult time. Caregivers are fragile. A smile, a kind word goes a long way in helping ease what is often a long and difficult road. Three cheers for caregivers everywhere! 

Caregivers Bill of Rights: Regarding Clinic Visits, Home Care and Hospitalization of Loved Ones
By Sharon Dardis, May 2010

  • Within legal and confidentiality parameters, I have the right to act as an advocate for my loved one’s health care and medical treatments.
  • I have the right to ask questions on his/her behalf, to be with them during exams and cares and to take informed notes, including test results and procedures, to be a more effective, informed caregiver, without fear of intimidation from medical and/or support staff.
  • I have the right to clear explanations with understandable instructions, including homecare before discharge from the hospital setting.
  • I have the right to have caregiving questions answered promptly when I call the doctors and nurses.
  • I have the right to not be intimidated or put down for my advocacy role, by gatekeepers for the doctors, nurses, nursing assistants, clinic appointment staff or other medical personal.
  • As the primary caregiver for my loved one, I have the right to respect, and even compassion, from all medical staff and personnel, including non-medical personnel.
  • I have the right to expect courteous and kind attention from all health care workers as I advocate for my ill loved one. I have the right to expect the best medical care available for my loved one. I have the right to request second opinions or transfers if the care for my loved one seems inadequate or substandard.
  • I have the right to be with my loved one as long as it doesn’t impede the tasks of those caring for him or her.
  • In so much as caregiving demands both physical and emotional energy, I have the right to a championing of my role from medical personnel, to empower me and my cares, rather than being given an impression I am somehow intruding or in the way.
  • I have a right to wear a big button that says, “I am a CAREGIVER! Caregiving Counts!” to remind people of the important role I play in my loved one’s recovery. (The downside of this is that, really, every one of us is a caregiver in one way or another. We should all be wearing “treat me kindly” buttons!)

Sharon Dardis, RN, BSN, is a former Hospice of the Red River Valley employee. Beginning as a volunteer, she later became a hospice staff nurse and bereavement specialist. Sharon developed and facilitated “Kids Grieve, Too,” for Hospice, a support and educational program for young people experiencing the death of a loved one. Moving to the Twin Cities in 1993, she helped develop and coordinate “Kids In Grief” another children’s grief support group in Stillwater, Minn. Now retired, Sharon is a board member of the Minnesota Coalition for Death Education and Support and also edits their quarterly newsletter, “Coalition News.” In 2000, Sharon coauthored and published, “As I Journey On: Meditations for Those Facing Death.” The proud mother of three and grandmother of eight, Sharon spends her time with husband, Stan, in St. Paul, Minn., and Alpine, Wyo.

Editor’s note: Republishing or reprinting any part of this article, The Caregiver Bill of Rights or Top 10 List is prohibited without prior written permission by the author, Sharon Dardis.

 

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/07/15/caregiving-101/

Jun 30

A Brit with a Big Heart: One Volunteer’s Experience with Hospice

Hazel MeidlingerMore than 4,000 miles away and 50 years ago, while growing up in Leicester, England, Hazel Meidlinger couldn’t have imagined the significant role Hospice would play in her life. She was familiar with the concept of hospice care because of its English roots, a movement started by Dame Cicely Saunders in 1948. “I heartily believed in hospice long before it was started in America because I recognized the importance of that type of care at the end of life,” Hazel explained. “I’m very much in-tune with it.” But as she busied herself with establishing a family, Hazel didn’t think much about hospice until many years later when a volunteer opportunity arose.

A Family Formed
While still in England, Hazel met the love of her life, Harold, while he was stationed there for the U.S. Air Force. Soon after they met, the couple married and welcomed the first of four children into their family. In 1955, Harold completed his service in the Air Force, and the Meidlinger family transplanted to America, making Council Bluffs, Iowa, their first home abroad. In the early 70s, the family, which had increased by three more girls, moved to Fargo, N.D., for Harold’s work, and Hazel continued to be a stay-at-home “mum”—raising their children.

Right Place, Right Time
It wasn’t until after their girls were grown that Hazel sought to continue volunteering as she did in Iowa. “Back in Iowa, I was somewhat involved in animal rescue, and I enjoyed that experience, and I wanted to do something here after the girls were gone from the house,” Hazel said. Her good works began at Dakota Hospital where she helped run the gift shop, and she said the experience was “just delightful.”

While working at the hospital, Hazel met two individuals who were instrumental in getting her involved with Heirlooms, an upscale resale store benefitting Hospice of the Red River Valley (HRRV). “I thought the whole concept of Heirlooms was just really neat,” Hazel explained. “Hospice was just getting the store started, and after listening to a presentation about the story of Hospice of the Red River Valley and their idea for Heirlooms, I just knew I had to help.”

Since the store’s inception in 2003, an upbeat, merry Hazel has greeted Heirlooms patrons at the front counter on Saturday afternoons, and even in her 80s, she wouldn’t have it any other way. “I look forward to my volunteering there, and I’ve never even thought about stopping,” she said. “I’m going to continue volunteering at Heirlooms as long as they’ll have me.”

Staffed by more than 70 volunteers, Heirlooms isn’t just a place of business to Hazel, but rather it’s a place with a wonderful atmosphere where she considers everyone as friends. She frequently sees familiar faces from the community. “I love the people there—both volunteers and shoppers, and I don’t consider what I do work because it’s such a pleasure,” Hazel described. “The other volunteers and the management staff are just wonderful.”

Something More
In early 2014, Hazel’s experience with Hospice of the Red River Valley deepened when her husband, Harold, began receiving care. For many years prior, Hazel looked after her husband who suffered from dementia, and when it was time for Hospice, Hazel welcomed the help. “I didn’t feel like the world was on my shoulders anymore; I didn’t feel alone,” she explained. “Even though my husband wasn’t on hospice care for very long, the Hospice staff was a great comfort and help to me and my family.” Hazel described his primary Hospice registered nurse as “kindness herself” and added the staff was always “very concerned with her husband’s care.”

Shortly after Harold began hospice care, he passed away, but Hazel remains grateful for the cares he received. “Now that I’ve seen the way Hospice helped our family, it’s all the more reason for me to continue supporting the organization,” she said. “I saw firsthand the kind of care people are receiving, and it’s so important because we’re all going to be there one day. I totally believe in Hospice.”

As the days go by and Hazel’s journey continues, she looks forward to the weekends when she works at Heirlooms. Smiling, Hazel added, “I feel great when I’m there and knowing that my work helps support such a wonderful organization that has given so much to others.”

Permanent link to this article: http://hospicerrvblog.areavoices.com/2014/06/30/a-brit-with-a-big-heart-one-volunteers-experience-with-hospice/

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