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Grief Webinar Series–Join us!

Happy Thanksgiving! This week, the Thanksgiving holiday propels us into another holiday season. All around us, people seem to be planning and celebrating. Friends and family express thanks for their many blessings; Christmas music plays on the radio; holiday cards arrive in the mail; decorations are hung; and plans are made to reconnect with friends and family. But, amidst the joy, laughter and sparkle, for those grieving the loss of a loved one, this time of year is fraught with anxiety, stress and maybe even dread.

Over the years, Hospice of the Red River Valley has offered various articles and tips for coping with grief. And, this year, we are pleased to share grief information with you in our upcoming Confidence in Care webinar series. Please join us for this informational webinar series where you’ll learn about:

Anticipatory Grief
Tuesday, November 27, 2-3 p.m.
This webinar will define anticipatory grief and dispel myths associated with this type of grief. Participants will explore different types of anticipatory loss and identify challenges and issues faced by individuals and families dealing with anticipatory grief. Click here to register.

Grief and Loss Awareness
Tuesday, December 4, 2-3 p.m.
Participants in this webinar will learn about various types of grief, factors that influence grief and suggestions for successfully handling grief. They will also learn how to identify warning signs of complicated grief, and how to seek help for those dealing with complicated grief issues. Click here to register.

Professional Caregiver Grief and Grief in the Workplace
Tuesday, December 11, 2-3 p.m.
This webinar will provide a way for health care professionals to explore issues of grief and loss as it relates to their roles as professional caregivers. Participants will also learn strategies to help grieving co-workers. Click here to register.

Please note: While these webinars are intended for health care professionals (nurses, certified nursing assistants, social workers, chaplains, physicians, etc.), the series is free and open to anyone who might find value in this information.

This Thanksgiving, we are so thankful for you—our readers, supporters, advocates and partners in care. We are truly blessed to live and work in the communities we call home. Happy Thanksgiving!

For more information about Hospice of the Red River Valley, please visit our website or contact us at 1-800-237-4629.

There Is No “They”: Join us for an inspirational evening.

There Is No TheyOn Thursday, November 15, Hospice of the Red River Valley is pleased to host well-known national speaker, author and customer-care expert Larry Johnson as he presents, “There Is No ‘They.’” This presentation is free and open to the public. Please join us at the Holiday Inn of Fargo at 7 p.m.

According to Larry, “The title, ‘There Is No They,’ came from people asking about CJ’s status—wanting to know what ‘they’ said were her chances of waking up from the coma, or when ‘they’ thought she could have her stomach tube removed, or if ‘they’ thought she would ever talk or walk again. It was as if everyone interested thought there was some ‘they’ out there who was monitoring our experience to make sure everything was handled just right – and so did we. Unfortunately, we discovered that there simply was no ‘they.’ There was just us, and we had to find our own way. This was daunting because even at its best, health care is often disjointed and misdirected.”

This presentation, which is 20 percent informational and 80 percent inspirational, is ideal for professional caregivers and family caregivers. It will rekindle health care professionals’ and managers’ dedication to serve their patients and residents, and family caregivers to serve their loved ones. By the end of this presentation, the audience will better understand:

  1. How patients and their families talk to others about the care and services they receive at health care facilities. According to TARP, a well-known customer service survey company, happy customers are not as vocal as unhappy ones. The 5/11 rule tells us that on average, happy customers brag about you to five others while unhappy customers tell eleven others how awful you are.
  2. How managing perception creates the reality of care as much as the actual delivery does. Obviously, the quality of care delivered to patients is important. Unfortunately, patients and families have no way of judging that quality—they only know how they feel about it when it is happening—and that is what they talk about when they tell others about their experiences. Therefore, it is incumbent on all care providers to actively manage the perceptions their charges have of the care they receive.
  3. Why care and compassion are important. CJ and Larry will share the story of CJ’s accident and their four-year journey through the health care system.

Many times, the right hand doesn’t know what the left hand is doing. Additionally, institutionalization creates great losses for patients and their loved ones: loss of privacy, loss of independence, loss of control, and worst of all, loss of being perceived and respected as an adult human being.

Larry vividly remember the day he walked into CJ’s room at one of the nursing homes in which she stayed, and found her sitting in her wheelchair with her hair done in pigtails and a doll placed under her arm. He knew the staff member who did this meant well, but also realized she did not perceive CJ as the 57-year-old adult woman Larry knew and loved: the student who maintained a 4.0 GPA all through college; the brilliant mortgage banker who managed a team of 10 loan officers; the woman who achieved Life Master status as a tournament bridge player; an active contributor to various political causes; and the mother of a successful adult daughter.

Of course, these losses are often the unavoidable side effects of leaving critical health care in the hands of strangers. Most institutions do the best they can with the resources they have, but they are not family, and can never care for a loved one the way family would. They must follow procedures, policies, and processes to get the work done. This kind of care can’t help but be impersonal. Nor, with the numbers of people involved, can snafus and missteps always be avoided.

Please join us at “There Is No ‘They’” on Thursday, November 15 at 7 p.m. at the Holiday Inn. For more information about Larry and CJ’s story, please visit their website. For more information about Hospice of the Red River Valley, please visit our website or call us at (800) 237-4629.

Nearing the End of Life’s Journey: Understanding the Dying Process

By Michelle Langlie

When someone you love is dying, it can be a very scary time. Along with the sadness of facing the loss, you may feel everything is out of your control, especially if you don’t understand the dying process. I believe by educating families and caregivers, it enables them to “take back” some control. If you know what to expect during the dying process, it doesn’t have to be so scary.

I was with my mom and dad when the doctor told my dad there were no further treatment options for him. He reassured my dad that he had fought the disease with every option there was, and commended him on that fight. He told my dad he wasn’t giving up, and it was time to bring in additional support for both him and my mom. This was hard to hear, but my dad’s doctor gave us the gift of honesty. He gave us the gift of time—time to prepare, time to have family travel home to spend time together—and time to educate ourselves.

My dad and mom had a wonderful team of hospice staff, which provided them with lots of information. My mom read everything the staff brought. Even though I have worked for hospice for more than 12 years, I didn’t have to take on the burden of educating my family—my dad’s hospice team did that—allowing me be a daughter, and not my dad’s nurse. My mom was terrified of what was going to happen. Like most hospice family members, she had never taken care of someone who was dying. The material my mom read empowered her. She was educating family and friends who stopped by as my dad was dying. When we asked her questions, she was able to answer with confidence knowing the hospice staff had prepared her.

When I have taken care of people going through the dying process, I feel the most important thing I can offer is education. Everyone wants to know what to expect, how long it will take, and if his or her loved one is comfortable. I tell families that the dying process is unique for everyone. We are all individuals with different life experiences that have molded us into the people we are. Our personalities play a part in our dying process.

Hospice has wonderful resources describing the dying process, starting at three to six months prior to death and going through each step until death. Because we are all unique, the information is only a general guideline. For some patients, the dying process may go much faster than it will for the next patient.

The hospice staff members are the experts, and when my dad was dying, I wanted the best for him. Having this team on our side gave my family the education and support to know that when he passed, dad’s death was peaceful, dignified and pain-free.

I hope you’ll consider joining us for our upcoming webinar Life’s Journey: Nearing the End on Tuesday, Oct. 25. You can register for this free webinar on our website. During the webinar, I will explain the signs that indicate an individual is in the last months and days of life. We will also discuss the appropriate comfort measures to take as the dying process unfolds. Most importantly, there will be time for your questions. Through this webinar, I hope I can help educate and empower you and your loved ones.

Michelle Langlie is a provider relations coordinator for Hospice of the Red River Valley.

Understanding and Caring for Those with Dementia

By Roxanne Smedsrud, RN

When I was in junior high, my great-grandma Ree went to live in the nursing home in Devils Lake, N.D. She had dementia and could no longer care for herself.  At the time, I knew that dementia meant she couldn’t remember things, and I thought it was just a normal part of “getting old.” She lived many years in the nursing home, and after awhile didn’t know her family or friends. She stopped talking, lost weight, became weaker and spent most of her time sleeping, either in bed or a wheel chair. The year she died she had pneumonia several times and was hospitalized a couple of times because of it.

It wasn’t until years later when I was a staff nurse at hospice and working with dementia patients that I realized dementia wasn’t a normal part of “getting old.”  Dementia is a disease that causes impairments in language, memory, personality, behavior and judgment. It doesn’t only affect the memory, as I had thought for many years. It affects the whole mind and body. I have heard people say that dementia is the reverse order of development. If you think about it, this is true. We come into the world completely dependent on others for our needs, and for many advanced dementia patients, this is how they leave the world. Death is often caused by infection in the lungs, urinary tract or skin.

Dementia is the third leading cause of death among older American’s. Life expectancy is from 2-20 years after the onset of symptoms, with an average of 3-6 years, which is shorter than previously estimated. Approximately 70 percent of people with dementia die in the nursing home. Because of this, nursing homes are key providers of terminal care to dementia patients. Advanced dementia clearly meets accepted standards of an end-of-life condition, but it is not widely recognized as a terminal illness. Compared with other terminally ill patients, those with dementia receive less optimal pain control, have fewer advanced directives, undergo more burdensome interventions and receive less hospice care.  

My grandma died 30 years ago, on June 14, 1981, the day after my wedding. I wore my mom’s wedding dress for our wedding, the dress my mom wore when she married my dad. The dress grandma Ree made for her 23 years earlier. Even though my grandma was not able to be at our wedding, I felt her with me. I know in her way she needed to be there, and after the wedding she was able to let go.

Hospice of the Red River Valley is celebrating its 30th Anniversary this year.  It makes me wonder how things may have been different for my grandma had hospice care been available at that time.  Would she have needed to be hospitalized for the pneumonia? Would her family have chosen to continue to treat the infections? Would she have been more comfortable?  If you have a family member, loved one, or friend with advanced dementia, please call Hospice of the Red River Valley (800) 237-4629 for more information. We can do an assessment free of charge to see if they qualify for hospice services.

We also have two upcoming free educational webinars that will address the topic of dementia and end-of-life care. For health care professionals, I recommend our webinar on Sept. 13, Compassionate Care for Those with Dementia. For family members and caregivers, please consider attending our webinar on November 8, Memory Loss and End-of-Life Care, which we will be co-presenting with the Alzheimer’s Association. For information or to register, visit hrrv.org/webinars.

Roxanne Smedsrud has been a registered nurse with Hospice of the Red River Valley for 17 years. This past year, she began a new role in the organization as a provider relations coordinator. What she has most enjoyed about her career in hospice care is the wonderful people she gets a chance to meet.

Difficult Conversations: How to Talk about Hospice Care

By Mary Lou Dahms

Have you ever had something serious to say to someone, but you just couldn’t get the words out? Or, have you had an important question that you wanted to ask, but not sure you wanted to hear the answer? I’ll bet this has happened to most of us, and my guess is that for some, it has been related to health care decisions or wishes.

I do believe that the most important discussion we have with someone while they are living is about dying. And yet, even though we know we should talk about it, we don’t. It’s probably because we don’t want to think of life without them. But, I can guarantee you that talking about it will not bring their life to an end. In fact, it may very well bring some calm and relief.

For health care professionals, it may be especially difficult to talk to someone whose care has been entrusted to you, or someone for whom you should be a care advocate. It may feel as though the topic of end-of-life is not yours to bring up. However, you are in an ideal position to start the discussion, because you are so closely involved in that individual’s care. You know what you are seeing and the changes taking place and you are better positioned to offer choices.

Difficult Conversations is a free webinar we are offering on Thursday, May 12 at 4 p.m., and it is particularly geared to health care professionals. It focuses on the importance of having those talks, who should be involved in the discussion and how to get a dialogue going. We’ll share some tips about choosing the right time and place and even have some one-liners you can use to get the discussion off to a good start.

Yes, on the top ten list of things to talk about, dying may be number 11. But there is a way to take the apprehension – and even the fear – out of the conversation. Please join us for what we hope will be a helpful presentation.

For more information about upcoming webinars, or to register, visit: www.hrrv.org/webinars

Mary Lou Dahms is the director of marketing and public relations at Hospice of the Red River Valley.

When is a Patient Appropriate for Hospice Care?

By Janine Hanson, LPN

When a family hears the words “hospice care” for the first time, it can be scary. Although I have worked with Hospice of the Red River Valley for many years, I was still unprepared when we were faced with this decision for a family member. I realized first hand how difficult this decision can be when it involves someone you love.

Thankfully, we have wonderful staff who were able to support and provide teaching to our family during a crucial time. My family could not have gone through our journey without the help and care provided from Hospice. 

If you are a health care provider, we know how challenging and difficult it can be to determine if someone is appropriate for hospice care. We are also aware of how hard it can be to start that difficult conversation. We can help walk you through the process of first identifying hospice appropriate patients, and then with starting the difficult conversation. 

We are pleased to share this information with you in our upcoming webinars. Our first webinar, The Hospice Appropriate Patient, will take place Tuesday, May 10 from noon-1 p.m. The information we share in this free presentation will be helpful in recognizing the patients you care for who may benefit from hospice care. We will review the disease specific criteria that is mandated by Medicare for hospice admissions, and also “paint the picture” of the patients who may be eligible for our services.

We are very proud of the relationships we have with the facilities we partner with. Our hope is that this information will make you even more confident in calling us to provide care for your patients.

For more information or to register for upcoming webinars, please visit: http://www.hrrv.org/webinars.php

Janine Hanson, LPN, is a provider relations coordinator for Hospice of the Red River Valley (HRRV).  Janine has been with HRRV for 11 years, and has also worked in patient care for 9 years as an LPN visit nurse.  Janine is very passionate about her work, the mission of HRRV and the services Hospice provides.

Difficult Conversations: Tips for Health Care Providers on Starting the Hospice Conversation with Patients and Families

By Janine Hanson, LPN

For many health care providers working in assisted living facilities, nursing homes and other environments, beginning a conversation about hospice care with a resident, patient or family member can be extremely difficult. Yet, as a trusted source of information, you can play an important role in ensuring patients are informed about—and receive—the most appropriate care available to them.

First, know that it is OK to talk about hospice care:

  • It doesn’t mean there’s nothing else that can be done,
  • It doesn’t mean there is no hope,
  • It doesn’t mean dying is coming soon,
  • It doesn’t have to be scary; it can actually be comforting, and
  • It can be the right thing to do.

When should I talk about hospice care?
There are a number of circumstances that may lead you to consider talking about hospice care with the patient, family member and/or the patient’s primary physician:

  • Following diagnosis of terminal illness
  • After repeated hospitalizations or trips to the emergency room
  • When you are seeing consistent decline
  • With family and resident at care conferences
  • When resident and/or family is requesting no further treatment or doctor visits

How do I start the conversation?
Choose a private, relaxed time when you can have a one-on-one discussion with the patient or their family member without distractions. Be sure that the patient or family member is comfortable.

Looking for an opening in the conversation will make the discussion easier; such as when the resident refers to his or her condition, or perhaps talks about “giving up” on treatment. Similarly, wait until a family member refers to their loved one’s condition.

A list of sample conversation starters for residents or patients, as well as family members, is available on our website. 

Most importantly, remember to ask and then listen. Ask open ended questions—those without a “yes’ or “no” answer to get the conversation going. Let the patient respond; your silence is OK. If need be, prompt the patient with additional questions. If there is resistance, you may need to postpone the conversation. Accept the person’s response, and don’t judge. Remember that your opinions and their wishes may be different

Additional tips:

  • Offer to call Hospice to set up a visit
  • If a Hospice staff member is in the facility, he/she will be able to answer questions
  • Offer to be a part of the conversation, or let the family visit with Hospice alone
  • Offer Hospice material whether a visit is scheduled or not
  • If resident/family member is not ready to talk, encourage them to let you know when they are

Remember, additional information about hospice care is available on our website, or by calling Hospice of the Red River Valley at (800) 237-4629. To all of our partners in care—thank you so much for all you do.

Janine Hanson, LPN, is a provider relations coordinator for Hospice of the Red River Valley (HRRV).  Janine has been with HRRV for 11 years, and has also worked in patient care for 9 years as an LPN visit nurse.  Janine is very passionate about her work, the mission of HRRV and the services Hospice provides.

The Need for Advanced Care Planning

By Susan Fuglie, executive director

The New York Times  reports, “The Obama administration, reversing course, will revise a Medicare regulation to delete references to end-of-life planning as part of the annual physical examinations covered under the new health care law.” According to the Times, “The move is an abrupt shift; coming just days after the new policy took effect on Jan. 1. … While administration officials cited procedural reasons for changing the rule, it was clear that political concerns were also a factor.”

I’m not writing this to make a political statement. The issue of Medicare compensating physicians for the time taken to talk with patients about end-of-life choices and planning, however, has received significant press—again—in the past week, and I need to speak up. As an impassioned hospice professional, I am deeply disappointed that this kind of planning between a patient and physician will not be encouraged and reimbursed by Medicare. However, my message is not about politics, Medicare or hospice. It’s about YOU and the people you love.

You see, the fundamental issue remains: advance care planning allows a person to make his or her wishes and care preferences known before being faced with a medical crisis. Advance care planning is simply smart life planning—and can be one of the greatest gifts a person can ever give to loved ones.

This is a deeply personal issue for me, and a tribute to my parents. Here’s the thing: they planned for the ends of their lives. They planned openly, lovingly and legally. Their advance directives and durable powers of attorney for health care were not only in order, but in the hands of family members and appropriate health care providers. And, they were backed up with years of casual, comfortable talk about what they would want, and why.

My mom suffered a massive brain hemorrhage; my dad, a heart attack in the late stages of Parkinson’s disease and dementia. In spite of their end-of-life preparation, many of our decisions during those last days and hours were very grey and difficult. So, please don’t think I’m suggesting that the planning makes all of this easy; it doesn’t. But, I can’t imagine what these family crises would have been like without the guidance my parents had provided. In our situations, hospice care ensured that they both died comfortably and peacefully; their planning ensured that we were also comfortable and at peace with the responsibilities that rested upon us.

Whatever one’s politics, advance care planning is NOT about limiting or rationing care. It’s not about hastening death. It’s not about saving money or taking away an individual’s choices.

Advance care planning IS about examining options, planning and communicating the choices that YOU want—either to limit treatments, accept all treatments or something in between.

To carry out a loved one’s wishes at the end of life is a profound act of love. But, how can you do it if you don’t know what someone wants; if you haven’t talked; if you haven’t planned?

Susan Fuglie joined Hospice of the Red River Valley in 1995.  As Executive Director, she is responsible for ensuring the highest standards of quality care, integrity in all business practices, and program development to meet changing needs within the organization’s service area.

 Information that can guide you in understanding various care options at the end of life is readily available through resources such as these:

Advanced Health Care Planning Resource Guide for North Dakotans (and others) available through Hospice of the Red River Valley: www.HRRV.org or 1-800-237-4629

Diagnosing and Addressing Pain in Dementia Patients

By Roxanne Smedsrud, RN

Because of their disease, many dementia patients are unable to report that they have pain. For family members or other caregivers of dementia patients, this can be a cause of concern. 

In my years as a hospice nurse, I’ve learned you can sometimes ask dementia patients repeatedly if they are experiencing pain, and they will answer “no.”  Often the biggest challenge is getting others to see that the patient is hurting, and allowing pain medications to be administered.

As an example, we once admitted a gentleman named Tom* at the nursing home. Tom had dementia, along with several other diseases, and also a history of depression. At the time of admission, he was extremely verbally abusive to the nursing home staff, and made very serious threats to their safety. When asked if he had pain, he always said “no.”

When I first met Tom, I asked if he had discomfort, and he told me his back hurt. I asked if he would like me to get him something for pain and he told me, “No, that Tylenol doesn’t do anything.” When I asked if he would try something stronger to help him be more comfortable, he said “yes.”

We started a very low dose of medication, gradually increasing it until he was comfortable. I saw Tom 10 days later and he looked like a different man. He was pleasant, the threats had ceased, and he was even sleeping some at night.

If you’re caring for a dementia patient, one of the best ways to determine comfort is to look at his or her face. Grimacing, frowning or furrowed brow all can indicate pain. Anxiety, agitation, constant pacing and inability to sit still can also indicate pain. They may also holler or yell because they hurt and are unable to express this.  

If you are caring for a dementia patient at home who is not on hospice services, I would suggest calling the patient’s physician and report what you are seeing. If the patient is in a nursing home or assisted living and hospice is not involved, bring it to the attention of the staff or physicians. 

Whether the patient is at home or in a facility, if you do not get the response you are hoping for—and the patient remains uncomfortable—I would encourage you to call Hospice of the Red River Valley to get more information about our services. We could assess the patient and see if they are appropriate for hospice at this time.

Hospice nurses are specially trained in this type of pain and symptom management. Many times, starting the patient on a small dose of pain medication is the first step. If pain is the culprit, we usually start to see improvement in the patient within a few days.

 * Name has been changed to protect privacy

Roxanne Smedsrud has been a registered nurse with Hospice of the Red River Valley for 16 years. She recently began a new role in the organization as a provider relations coordinator. What she has most enjoyed about her career in hospice care is the wonderful people she gets a chance to meet.

September is Pain Awareness Month. For more information about pain and symptom management in hospice care, visit the resources section of our website: http://www.hrrv.org/resources-articles.php

Celebrating Assisted Living Week

It’s National Assisted Living Week, and during this time each year we like to extend our gratitude to our partners in care working in assisted living facilities throughout our service area.

Many times, people are surprised to learn that hospice care is available in assisted living facilities, nursing homes or even hospitals—wherever a patient calls “home.”

In assisted living facilities, Hospice staff does not take over care, but rather combines their skills and expertise with facility staff. In this situation, we take the lead in directing symptom management and comfort, rather than aggressive treatment. And, Hospice staff members provide emotional and spiritual support regarding end-of-life issues.

In addition to members of our patient care teams, Hospice of the Red River Valley also has a team of provider relations coordinators who work closely with the staff in assisted living and long-term care facilities to ensure residents with limited life expectancy have access to hospice care.

An article in our most recent issue of Touching Lives magazine features an inside look at an assisted living facility’s partnership with Hospice of the Red River Valley. I encourage you to read more about this wonderful partnership here: http://www.hrrv.org/pdf/CelebratingLife.pdf . Please let us know what you think by commenting below.