Happier with help for the holidays02/16/2015
By Ashley Horst
Hospice of the Panhandle
patient Christiane Van Hout has a big week in front of her.
She looks forward to spending
Christmas Eve with one of her two daughters, and then spending Christmas Day
with the other. As you hear her talk about her holidays in her lovely Belgian
accent, her excitement is contagious. What is also contagious is the love she
has for her hospice team.
The Berkeley Springs resident
credits Hospice of the Panhandle with allowing her to enjoy the holidays. Her
nurse, Renee Parsons, visits to make sure she is feeling well, answers any
questions that she has about taking care of herself and makes sure that she has
what she needs to be comfortable during the holidays.
Van Hout also loves the
several volunteers who visit with her. Sometimes they sit with her, but when
she feels up to it and the weather is cooperating, she and a volunteer will go
for a walk, which lifts her spirits. One volunteer, Karen Perry, even brought
her a small, pretty Christmas tree to help her celebrate because Van Hout, who
has lung cancer, won't put up a large tree this year.
Calling hospice, Van Hout
says, was the best thing she ever did for herself. An independent woman at the
age of 79, Van Hout, lives alone in her own home. She wants to stay in her own
home for as long as possible, and while she is supported by her two loving
daughters, she doesn't want to create undue concerns for them.
She explains how, when a
person has a serious illness as she does, the unexpected can happen, especially
in the middle of the night. With hospice, she has support 24 hours a day, seven
days a week, which translates into peace of mind for Van Hout and for her
With the holidays come
stress, even without the added anxiety of a serious illness. For patients
suffering serious illnesses, the holidays can bring hospital visits, pain and
other distressing symptoms. All of these can prevent someone from enjoying the
holidays with the ones they love. Hospice helps people in the last stages of
serious illness avoid these issues by providing care wherever they reside.
Hospice nurses work with
patients and their families to keep them comfortable during the holidays and
are available by phone all hours of the day or night to answer questions and
make visits should a crisis arise. Home health aides help patients with such
personal care as bathing, shampooing hair and trimming fingernails so that
patients can look their best when visiting with family and friends. Volunteers
make visits, sometimes bringing a plate of cookies or singing a carol.
The goal of hospice care is
to allow those with end-stage illnesses to be where they want to be - at home,
enjoying the holidays with family and friends.
For Christiane Van Hout, the
holidays mean being with her children and grandchildren without worrying about
her illness, because she knows that she has help whenever she might need it.
For more information about
hospice care, contact Hospice of the Panhandle at 304-264-0406 email@example.com. You can also go online
Hospice of the Panhandle provides compassionate end-of-life care to residents
of Berkeley, Hampshire, Jefferson or Morgan county.
Be an advocate this holiday season02/16/2015
By Maria Lorensen
I bumped into a friend
shortly after the Thanksgiving holiday. I knew she had had a houseful of
out-of-town guests, and I asked her if things in her life had gotten back to
normal, and she could breathe a little easier, now that the cooking, cleaning,
eating, cooking some more had subsided (at least for a brief time). She then
proceeded to tell me that while she had enjoyed the holiday, her husband's
elderly mother had had a stroke some weeks back, had been hospitalized, went to
rehab, and was now back in the hospital again. Doctors had thought she may have
had a heart attack during her second stay in the hospital.
My friend, a healthcare
professional, thought that her mother-in-law might even have pneumonia. Doctors
had ordered chest X-rays the day I had spoken to her.
My friend's sister-in-law,
the patient's daughter, was staying with her mom each night since she was first
hospitalized, and my friend's husband was making daily trips back and forth
from the hospital, exhausted even before the holidays had begun. His sister was
even more frazzled, rarely leaving her mother's side.
I asked my friend the
question: "Do you think she's ready for hospice?"
She responded, "I know
she wants to go home."
And I said, "You know we
can help her do that."
She proceeded to tell me that
her mother-in-law, a retired healthcare provider, was a stubborn woman, and
probably wouldn't want to think about hospice care, which, despite her
professional understanding, she would perceive as "giving up."
That patients don't want to
"give up" is one of those common concerns that those of us who work
at Hospice hear very often. None of us wants to give up - we are taught at an
early age that we should work hard, fight to the end, try to win the game.
But sometimes, winning may
not be an option. We grow weary. We just want to go home.
Studies have shown that most
patients, when facing the reality of a terminal illness, would prefer to spend
their remaining time in the comfort of their homes, surrounded by friends and
My friend promised that she
would try to nudge her husband and his sister to broach the subject of hospice
care with their mother. While she was familiar with what Hospice of the
Panhandle does, she acknowledged that having the conversation wouldn't be easy.
I told her that Hospice could even help on that front our nurses could pay a
visit in the hospital, just as they would in a person's home, talk about
I told her I would keep the
family in my thoughts, and asked for her to call if she needed more information
In my mind, I recalled a
conversation I had with my own parents, 16 years ago this month, in fact, when
my mother was hospitalized in another state, and it was apparent to my father
and me that she wasn't going to get better. She had been in and out of the
hospital multiple times in the last six months of her life, had contracted
pneumonia and a bacterial infection, had been to the rehab unit at the hospital
at least twice. When I asked Mom's doctor about hospice care, she took a
"let's-wait-and-see" attitude. Two days later, Mom became
non-responsive. One day later, she died.
I so wish that I would have
advocated a little more. I knew my mom was tired of fighting. I know she would
have wanted to be home.
During this holiday time,
perhaps you know someone or have a loved one suffering from a serious,
life-threatening illness, who wants to remain or get home comfortably.
You can be an advocate to
make this happen. Hospice can help.
For more information on
hospice care or services, contact Hospice of the Panhandle at 304-264-0406 or
check our website at www.hoscpiceotp.org
Maria Lorensen has been the development director for Hospice of the
Panhandle for six years. She can be reached at (304) 264-0406, ext. 1225, firstname.lastname@example.org
Medical providers need salute for selfless acts02/16/2015
By Margaret Cogswell
During November, Hospice of the Panhandle has been highlighting
the "heroes" in our midst - our patients, families, caregivers, staff
and volunteers - as part of our celebration of National Hospice and Palliative
Care Month. You've read about them in this newspaper, can read even more in our
upcoming Hospice Comforter magazine. We are grateful for how often we bear
witness to the acts our heroes perform - whether it be a simple act, like one
of our Certified Nursing Assistants giving a manicure to a patient at the
inpatient facility - or something more arduous, like a caregiver getting up at
all hours of the night to administer medication for her loved one's comfort.
There are so many heroes who
are involved in the care of our patients. Patients' physicians - specialists,
family practitioners, internal medicine practitioners, many of whom have been
caring for patients for decades - are heroes in our community as well. The
husband of one of our patients who passed away recently nominated his wife's
oncologist, Dr. Matthew Jones, as an "Everyday Hero."
He had this to say about Dr.
Jones: "(My wife) wanted so badly to keep her appointment with Dr. Jones
on Sept. 30 just so she could thank him for the way he treated us during our
monthly visits. No matter how busy or packed (the office was), he had a special
way of making us feel like we were the only ones in the building."
There are so many other
medical providers in the Eastern Panhandle who are heroes to their patients,
families and to our agency. We salute them for their selfless efforts, and we
appreciate the care that they offer to patients, day in and day out.
During this time of
Thanksgiving, we are truly grateful.
Dream Foundation, Hospice help man fulfill wish10/29/2014
By Maria Lorensen, Development Director
MARTINSBURG - Paul Stidham's 4-year-old black dachshund, Lieben, quietly licks his master's hand as Stidham talks excitedly about his upcoming adventure this weekend.
Just in time to celebrate Stidham's 59th birthday, tickets arrived Tuesday for Stidham, his sister and sister's husband to see Fleetwood Mac at the Verizon Center on Friday.
The tickets came courtesy of the Dream Foundation, a nonprofit national adult wish-granting organization that operates out of Santa Barbara, California, and through the efforts of Stidham's Hospice team, led by nursing assistant Tasha Prevette.
Stidham says he's looking forward to "having a ball" Friday evening, and especially meeting Stevie Nicks, who he agreed was "hot," backstage after the event. Stidham, who is a Marine, opened the package that arrived for him that included the tickets, room reservation confirmation, a hat and T-shirt and spending money in the presence of Hospice team nurse Carina Roberts and social worker Vicky Pennington-Carr.
"I'm really excited," Stidham said. "It should be great. Lindsey Buckingham is one of the most underrated guitarists of all time."
Stidham, who suffers from Chronic Obstructive Pulmonary Disease, has been a fan of the group since the early 1970s. He says the first album he ever purchased was the "Rumours," the group's blockbuster album released in 1977. It included songs like "Go Your Own Way" and "Don't Stop." Stidham's personal favorite, "Landslide," is a song written by Nicks and released two years earlier.
Stidham, and his sister, Genna Luke, his caregiver, said they began talking about Fleetwood Mac's concert several months ago when they heard the group was coming to D.C. They started checking on ticket prices. When members of their Hospice team learned of Stidham's interest in the band, they immediately got to work.
"We started the process of getting the paperwork in order and it didn't take too terribly long," Pennington-Carr said. "We are just so thrilled that he's going to be able to get to do this. I may be more excited than Paul."
But maybe not as excited as his sister.
"I'm so happy for him, and happy to get to go along," Luke said. "I'm part of the package, and I'm great with that."
Luke, who has been caring for Stidham since February, and her husband will accompany Stidham to the Verizon Center, and will get to stay at a Hampton Inn nearby for two nights. They also receive funds to cover travel and meal expenses while they are away.
While Luke and her brother have had some challenging times since she began caring for him, she says she "wouldn't have it any other way. Families need to stick together." She credits Hospice for being a "great support" to her and her brother, and says she's convinced that her brother wouldn't be here if it weren't for the care that he's received.
"Hospice has been wonderful, and has really touched our heart," Luke said. "They helped so much with this (dream). We are thankful."
For more information, contact development director Maria Lorensen at 304-264-0406, ext. 1225 email@example.com.
True Heroes: Hospice patients and families conquer hardship10/28/2014
By Ashley Horst, Fundraising & Marketing Coordinator
We see so much on television and in the movies about superheroes. They have amazing strength, everlasting endurance and bravery in the face of challenges. Many have secret identities, showing one face to the world and then putting on their mask to go fight evil. Clark Kent as Superman, Bruce Wayne as Batman and Oliver Queen as Green Arrow come to mind. They don't fight because they want the glory. They fight because they see a need, often performing tasks that might cause themselves harm as a sacrifice to others.
In a recent episode of The Flash (spoiler alert!), the Flash (whose alter ego is mild-mannered, forensic scientist Barry Allen) takes on The Mist, a villain who can change his body into a toxic gas. During one of his encounters with The Mist, the Flash allows himself to be poisoned in order to help the team at S.T.A.R. Labs figure out how to stop this dangerous villain. Together they figure out how to defeat The Mist and, in the process, save Barry's surrogate dad.
This is one of many heroic stories being told today on television and in the movie theater. These stories are fictional, of course, scripted by writers, directed by directors, played by actors and actresses and then delivered to us via the magic of Hollywood. Many actors, writers and directors will win awards for their hard work, but not every hero wins an award.
We, at Hospice of the Panhandle, encounter heroes every day. Our patients and their caregivers are real life heroes. Many caregivers have their secret identities. They go to work, church and school with very few people knowing their caregiver identity and the tasks they will conquer when they get home. For example, we've seen teenagers care for seriously ill parents and grandparents with strength and bravery that their friends at school will never see. We frequently work with adult children who are caring for parents with dementia, often going for years with very little sleep and arranging their entire lives around the needs of their aging parents. Additionally, it is not uncommon for them to do this for one parent and then the other with only a very short break in between.
Just like in the episode of The Flash, caregivers often endure hardship themselves - lack of sleep, emotional turmoil, stress on relationships, financial hardship and much more - all in the name of love for the person for whom they are caring. And if you ask them, they would do it all over again.
A great example of this is (spoiler alert!) one of our Hospice Heroes who was nominated by hospice patient Frank Chavis. Chavis nominated his son, David, to receive an Everyday Hero award. In his nomination, Frank talks about how David, who was living in another state, gave up his job and his home to return to the area to care for his father. Without a hero like David, Frank would not be able to stay in his own home.
We are constantly in awe of the selflessness, strength, endurance and bravery displayed by our patients and their caregivers. During November, in honor of National Hospice and Palliative Care Month, we will be sharing the stories of our hospice heroes. You will be introduced to our patients and their families who have shared their stories with love, pride and gratitude for the people they consider their heroes. It is truly an honor to share these stories with you. It's also an honor to get to work alongside these real life heroes every day.
You can read about these heroes among us here in The Journal and in some of our published materials, as well as on the Hospice of the Panhandle website.
Ashley Horst is the marketing and fundraising coordinator at Hospice of the Panhandle, a 34-year-old nonprofit organization that provides professional medical care and volunteer support to individuals with end-stage illnesses. Horst can be reached at (304) 264-0406, ext. 1223, firstname.lastname@example.org.
Hospice Receives Donation from Military Order of the Purple Heart10/28/2014
Maria Lorensen, development director, Hospice of the Panhandle, accepts a donation of $200 from James H. Grose, commander, Chapter 646, Military Order of the Purple Heart of Martinsburg. Hospice takes special care in the treatment of veterans, and the donation represents recognition for their caring service and is intended to make the final posting of their veteran patients comfortable. The presentation included a tour of the new and impressive facility by Lorensen, who said they accommodate palliative care needs of patients from Berkeley, Jefferson, Hampshire and Grant counties. The Military Order of the Purple Heart is comprised of combat wounded veterans and maintains a local chapter in Martinsburg. It meets at 6:30 p.m. the first Wednesday of each month at the American Legion, 125 W. Race St. Interested combat-wounded veterans may contact Grose at 304-582-1941.
Hospice Achieves Commendation for Program10/28/2014
KEARNEYSVILLE - A Hospice of the Panhandle veterans program instituted three years ago in partnership with the VA has achieved the highest level for honoring veterans.
The "We Honor Veterans" program was begun at Hospice of the Panhandle in 2011 and was designed to better serve veteran patients, who make up about 25 percent of hospice's patients. The program represents a partnership among hospices around the country, the VA and the National Hospice and Palliative Care Organization.
"It is always our desire to give patients excellent care, and we have always been aware of our veterans," said Tricia Lawrence, hospice's volunteer coordinator. "The 'We Honor Veterans' program represents a concerted effort to assure that our veteran patients are recognized and thanked for their service."
Since being instituted at Hospice of the Panhandle, "We Honor Veterans" has recognized hundreds of veterans who are hospice patients.
There are four levels of the We Honor Veterans program. The first level of the program involves establishing tools to recognize veterans, assuring that staff and volunteers are aware of patient veterans' status and educating the community. The second level builds upon the first, and requests more venues in which presentations can be made about the program (such as churches and before community groups). At hospice, the agency added a "veteran-to-veteran" program wherein veteran volunteers routinely visit veteran patients. John Sherwood, Hospice's volunteer of the year and an Army veteran, participates in the veteran-to-veteran program.
"What a privilege it is to hear their stories," Sherwood said. "Some of them have never told them before."
The third level commendation builds upon the other two levels and also focuses on helping veterans access benefits. Finally, the fourth level builds on the previous levels while requiring an annual review.
As part of the We Honor Veterans program, Hospice of the Panhandle added a special honor ceremony for veterans who die in the inpatient facility. When a veteran passes, a veteran volunteer or staff member performs a solemn ceremony wherein the American flag is draped over the patient as he or she is escorted from the building. These ceremonies are performed at any hour - day or night. Lawrence said family members appreciate the ceremony and are touched by the effort made to recognize the veteran's service - especially at the end of his or her life.
"Watching an honor ceremony is very moving," Lawrence said. "I have been a part of them at the inpatient facility and staff members are very attentive to the families, and their strong emotions, at the time of the veteran's death."
Hospice of the Panhandle will continue its commitment to providing excellent care to veterans, Lawrence said.
"Veterans as a whole are so important to this country - they've taken care of us, and now it's our turn to take care of them."
While the recognition is important, what's more significant is how much additional awareness of veterans has been created as a result of the We Honor Veterans program.
"I don't think a lot of staff had really known or understood the extent of what our veterans had experienced," Lawrence said. "The staff members have a much better understanding. It's always a part of the conversation."
For more information about Hospice of the Panhandle, call 304-264-0406
Coping with the Grief You Feel Before a Loss10/28/2014
By Daniel Speis, Coordinator of Grief Support & Spiritual Care Services
Grief is one of those experiences in life that unless you've been through it, it's difficult to understand. Simply put, anytime we lose something or someone in our life that we are attached to, we experience grief; and the more profound and deep the loss, the more profound and deep the grief. A powerful phenomenon, grief affects us with emotionally intense pain, but what most people are not often aware of is that grief can also affect us physically, mentally, and even socially and spiritually. Grief is truly a "whole-person" experience - it is not simply an emotion.
But this isn't the only time you can experience some of the reactions of grief. In fact, when you have a loved one who is seriously ill with perhaps only a short time to live, you can also find yourself experiencing some reactions of grief. This is what is referred to as anticipatory grief - the grief you start feeling before the loss, and even your loved one may experience anticipatory grief as they start realizing that soon they will leave their loved ones behind.
Many people will ask how to cope with this anticipatory grief. Let me say that there is no single correct answer, and although there is nothing we can do to fully prepare for life without our loved one, there are some suggestions that may help.
Take one day at a time. Although this phrase is cliche, it's true. Live today as if this were the last day with your loved one. Enjoy your time together, but don't be afraid to allow yourself to feel the pain and sorrow, and don't be afraid to allow your loved one to do the same, because facing our pain and working through it can lead to healing by acknowledging what both of you are going through.
Also, don't worry about what tomorrow brings; stay present in the moment today. We all too often focus on the future, or worry about the past, and we forget how to live in today.
Attend to unfinished business. Say what you need to say, and do the things you need to do. So often people experience regrets after their loved one has died, wishing they had been able to say something or do something. Now is the time to do or say those things. Say "I love you," and find ways to show it. If you need to ask for forgiveness, ask for it. If you need to offer forgiveness, offer it. Make amends, make peace and find closure.
Take care of the practical concerns now. Is there a will? Are there advance directives of your loved one's wishes for care at end of life? Do you know what they want after they die? Do you know where all the important papers are? Although these are mundane tasks, they are tasks that must be attended to, and if attended to now, can save heartache and headache later.
Draw on others for support. Don't go through the pain of your loss alone. Turn to others with whom you can share your thoughts and feelings. So often we try to "be brave," or "be strong," and somehow we get the idea that this means we can't ask for help or be vulnerable with others for being perceived as weak or cowardly. In fact, seeking help from others actually enables us, in fact, to continue being brave and strong.
Find a way to say goodbye. Probably the hardest part of anticipatory grief is the knowledge that at some unknown point in the future, your loved one will die. Often we try to protect ourselves and our loved one by avoiding talking about death, but during the course of a known terminal illness we have the opportunity to find a way to say goodbye in a way that we wouldn't if our loved one were to die suddenly and without warning. How to say goodbye may look different from person to person. For some, it may be actually saying the word "goodbye." Others may offer assurance to their loved one that they will be OK, and that it's OK for them to die. Regardless, don't be afraid to talk about death as it will offer you and your loved one the opportunity for peace, healing and closure; an opportunity that once lost, is forever gone.
Death is frightening, grief can be terrible and learning that your loved one has a terminal illness can be devastating, but it can also usher in a time to make new memories, find peace and healing and deepen the love you have with your loved one as you cope with the grief you feel before the loss.
Daniel Speis is the coordinator of Grief Support and Spiritual Care Services for Hospice of the Panhandle. He can be reached at 304-264-0406, ext. 1111, email@example.com.
Talking to Your Doctor About End-of-life Care10/28/2014
By Dr. Sarah Phillips, Medical Director
Discussing end-of-life issues can be intimidating. Thinking about one's own mortality is difficult. But the reality is we are all on this journey that will someday come to an end. Hospice care strives to make the last leg of the journey as comfortable as possible, focusing on quality of life as the quantity shortens.
A patient's health care is a shared responsibility of the patient and their doctor. As with any relationship, communication is key. Throughout most of our lives, the conversations with our doctors are focused on preventive and curative measures. It is not until the conclusion of our life that we need to shift that focus to comfort measures.
Because so much of the patient-doctor interactions surround promoting a healthy life, neither party has devoted much, if any, time to discussing the end of life. As a hospice provider, all of my patients are in the final stages of their lives, and I cannot begin to stress how important these difficult but necessary conversations are.
I hear time and time again from hospice patients that they wish they would have enrolled in hospice sooner. So what are the barriers to accessing hospice? I feel that there are two primary obstacles at play. First, the misconception that hospice means giving up or a hastened death. While hospice care does not focus on curing an illness, the goal is to control symptoms so that the patient can have the best quality of life in the months, weeks, days or hours they have remaining.
The second major obstacle in accessing hospice care is feeling comfortable talking about it. A co-worker of mine often says, "No one wants to grow up and be in hospice." How true that is. In general, death is a scary prospect, but one we will all face one day. So let's eliminate some of that fear and uncertainty. Let's talk about it. Easier said than done, but I have found that just as in life, having a plan around something, being confident that you have the support you need and knowing that you will be cared for, eases the anxiety and fear of the unknown that surrounds death.
I want to empower patients to talk to their doctors about their plans and wishes for their end-of-life care. Doctors are not mind-readers, trust me. We need to hear your concerns, fears and wishes. There are so many factors that impact a person's healthcare-finances, transportation, religious beliefs, cultural beliefs and family support, just to name a few. Medicine is much more than treating a disease. It is about looking at the person as a whole and taking into account not only the physical needs, but the emotional, mental and spiritual needs as well. This approach is critically important at the end of life.
Hospice is a wonderful resource that aims to help patients, families and physicians accomplish this holistic approach. Death is the inevitable conclusion of life. We all deserve comfort, care and support as our journey in this world comes to a close.
Let hospice help.
I want to close with an excerpt from the Hippocratic Oath. This is an oath that physicians take as they enter their medical careers. The oath reads:
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon's knife or the chemist's drug.
There comes a time when a cure is no longer possible. This doesn't mean failure on the part of the physician or the patient. It is the natural cycle of life. Your doctor is dedicated to caring for you throughout all stages of your journey. The end is just as important as the beginning and the middle.
Talk about it.
Dr. Sarah Phillips is the medical director for Hospice of the Panhandle. For more information about hospice care, call 304-264-0406.
Difficult Conversations You Will Be Glad You Had10/28/2014
By Bill White, Community & Provider Relations Director
Like many others of my generation, I had to deal with the death of a parent recently. Dad was 91 when he passed away in January and had lived a full and blessed life. Nevertheless, his passing was still a very difficult and emotional time. Some days it still is.
As part of the "greatest generation," my father was very good at addressing difficult issues when they arose, usually with little fanfare. That is how he approached end-of-life issues. My mother and my siblings all knew what Dad wanted when his time came; he wanted to die at home if possible and he did not want any heroic measures that might extend the quantity but reduce the quality of life. Dad had a living will and designated a medical power of attorney, and more importantly, he told us all what he wanted. The decisions we had to make at the end of his life, while not easy, were made with the confidence we were doing what he wanted. Probably the most difficult decision for the family was determining when to disconnect all life support for my father. I think we may have felt as if we were giving up too soon, or felt guilty that we had not done all we could, had he not been clear in letting us know his wishes.
For many, conversations about end-of-life issues are very difficult. No one wants to think about a loved one dying, so if the topic comes up many just change the subject. My whole family is very thankful that Dad would not let us do that. In fact, most of us are so grateful that we have addressed these issues with our own children. Having these difficult conversations is just part of being a responsible adult, even if we are currently in good health and have reasonable expectations of living a long time.
There are a number of end-of-life decisions that may need to be addressed. Questions can range from "Under what circumstances would I want to receive life-support treatment and for how long?" to "Who would be the best person to make decisions for me if I am not able?" to "At what point might I want to consider hospice care as opposed to aggressive treatment of a disease?" There are no answers to these questions that are right for everyone. Each person is unique. Even if a person decides what he or she would like at this time, the decision may change in the future. Fortunately, documents used to record these decisions can be changed easily and as frequently as needed.
There are a number of other areas that may need consideration, such as financial and legal concerns, spiritual or religious concerns, funeral preferences and many other areas. Fortunately, many resources exist that may help you ask the right questions, and some may even help in finding the answer right for you. For example, Hospice of the Panhandle will host a program Oct. 16 that includes a lawyer, a minister, a funeral director and a Hospice representative to help people better understand possible end-of-life issues. More information will be available when the date gets closer.
There are no right or wrong ways to start these difficult conversations. Sometimes the person who is ill will begin the conversation. Other times it may be a caregiver, or a doctor. If you don't know how your loved ones would answer these questions, or if they don't know your preferences, then I encourage you to take the initiative. It may be uncomfortable at first, but you may be surprised at how sharing this personal information may even improve your relationship. From personal experience, I can tell you it is much better to have had these difficult conversations before you need to make decisions.
Bill White is the community and provider relations director for Hospice of the Panhandle. He can be reached at or (304) 264-0406, ext. 1216.
Myths about Hospice and End-of-life Care10/28/2014
By Ashley Horst, Fundraising & Marketing Coordinator
There are some things that frighten me - unknown bumps in the night and spiders, for example. Luckily, these are things that are relatively short-lived, momentary thoughts or fears that quickly go away.
Then there are things that truly, deep down terrify me, like having to face the loss of a loved one. I know I'm not alone in this fear. According to the National Institute of Mental Health, 68 percent of Americans fear death. I think this fear extends beyond our own death to the thought of those closest to us dying.
So we don't talk about it, even when faced with a serious illness. We're afraid that if we talk about it, it will happen. Well, talking about it isn't going to change if it will or won't happen. It also won't change our need for end-of-life care, so we might as well clear the air. Let's get some of the myths about hospice, or end-of-life, care out there so that we can stop letting fear keep us from having this very important conversation.
Myth No. 1: If I suggest hospice, my loved one will give up or feel like I'm giving up on him or her.
Recently, I spoke with a patient's mother about her experience with calling hospice for her daughter who has a rare disease. She said that she was resistant to call because she didn't want to give up hope or put a time limit on her daughter. Fortunately her daughter's doctor and some friends convinced her that she needed the help that hospice offered. She soon realized that having hospice care for her daughter didn't require them to give up hope. Instead, they are surrounded by a team of caregivers who uplift them and provide her with the help she needs to care for her daughter at home.
Additionally, the time frame that her daughter's doctor had predicted has come and gone and her daughter is still being cared for by hospice. This is not uncommon. Some people live longer than expected when receiving hospice care because their pain and symptoms are controlled in their own homes where they are most comfortable.
Myth No. 2: If I have hospice, I can't see my doctor anymore.
Like we are comfortable in our own homes, we are also comfortable with our own doctors who, for many of us, have been caring for us for years. These are the medical professionals who we trust the most because they know our lives and our histories. They've delivered good news to us with a smile and held our hand when the news wasn't so good. We want them to walk our final journey with us.
With hospice, you don't have to give up that security. You can continue to see your own doctor as long as you are able. In fact, Hospice of the Panhandle has worked with over 125 different physicians so far this year. One local physician told us that the Hospice nurses are his eyes, ears and stethoscopes. They keep him up-to-date on what's happening with his patients who have hospice, since the nurses see them more frequently than he can. It's a partnership that results in the best care possible for people with end-stage illnesses.
Myth No. 3: You have to have only days left to live to have hospice.
In 2013, half of all Hospice of the Panhandle patients received hospice care for more than a month. More than 200 of those patients were cared for by Hospice for more than three months. Additionally, 70 patients left hospice care because they no longer met the Medicare guideline to be eligible for hospice care. They improved under hospice care to the point where they no longer qualified!
The guideline set by Medicare is that if a person's serious illness follows a normal path, his or her physician would expect that person to have a life expectancy of six months or less. That is the guideline. The reality is that we don't have a crystal ball and can't predict the future. We can make an educated guess based on science and experience, but that does not make it so. This means that some people receive hospice care for several months when their doctor predicted that they would only live for a few weeks. Others receive care for a few weeks when it was predicted that they would be with us for months.
The truth to the matter is that there are great benefits to having hospice care for more than a few days or weeks. When hospice is invited to care for you earlier rather than later in the disease process, your pain and other symptoms can be prevented from spiraling out of control. Your caregivers can get extra support before they become overwhelmed. You can avoid trips to the emergency room because you have the support of a medical team just a phone call away. You can preserve your quality of life as much as possible.
Talking about hospice really is talking about quality of life. It's about making a decision to focus on living the best life we can when we know that we aren't going to live forever. Looking at it this way may help us face our fear of talking about end-of-life care. It's kind of like turning on the light to see what went bump in the night.
Ashley Horst is the Marketing and Fundraising Coordinator for Hospice of the Panhandle. She has helped educate the community on hospice and end-of-life care during her work there for the last six years.
For more information about hospice care, call 304-264-0406.
Hospice nurse shares her stories on Capitol Hill07/16/2014
KEARNEYSVILLE - Ask hospice nurse Renee Bledsoe about the favorite part of her job and the answer is immediate: "I touch lives every day. How many people can say that?" she says as her eyes light up.
Bledsoe, a nurse at Hospice of the Panhandle since 2009, recently spent two days in Washington, D.C., on Capitol Hill, telling West Virginia's congressional representatives about her work every day, and why she believes it's so vitally important.
Bledsoe is a crisis care nurse, meaning that she often will work an entire shift at the bedside of a critically ill hospice patient, monitoring his or her symptoms, pain management, medications and other needs, as well as the needs of his or her family members. She is also a Certified Hospice and Palliative Licensed Nurse (CHPLN).
"(What I do) is really the only bedside nursing on the planet," Bledsoe said. "My goal every day is to empower families to let them know that they are the right ones to be taking care of their loved ones, primarily at home."
Before coming to work at Hospice of the Panhandle in 2009, Bledsoe worked at Shenandoah Nursing Home in Charles Town. She says that's where she was introduced to the concept of hospice care. She liked meeting the staff from Hospice of the Panhandle, and appreciated the work hospice staff performed in the nursing home.
"I think I really came to love hospice back then, and when the opportunity presented itself, I got the chance to come here," she said.
There haven't been any second thoughts.
In addition to doing crisis care, she can make regular nursing visits, as well as assist in hospice's new inpatient facility. She gets to work in all four counties that hospice serves, gets to know all the staff and enjoys doing "a little bit of everything."
One of her most memorable experiences since coming to work at the agency - and one she shared with congressional staffers - is the entire weekend she spent with a family, who lived out in the country. It was the weekend of Dec. 18-19, 2009, and nearly 2 feet of snow fell in the region.
"I was snowed in - they were a farm family living in a remote area - and the patriarch of the family was very ill," Bledsoe said. "It was a time I'll never forget."
Bledsoe also told congressional staffers about helping a grandmother care for her young grandson. The grandmother was having difficulty coping; Bledsoe was able to make her feel more comfortable and competent about what she was doing.
Bledsoe was the only hospice representative from West Virginia who traveled to Capitol Hill to discuss issues hospices around the nation are attempting to resolve with the Centers for Medicare and Medicaid Services (CMS). CMS has issued recent guidelines that have the effect of hospice patients being denied certain medications because of a lack of a review system. Hospice representatives were seeking to have the guidelines delayed.
Bledsoe was able to meet with staffers from the congressional offices of U.S. Sens. Jay Rockefeller and Joe Manchin and Rep. Shelley Moore Capito. She dropped off materials at the offices of Reps. Nick Joe Rahall and David McKinley. Sen. Rockefeller, as chair of the Senate subcommittee on health care, was co-author of a letter to delay the implementation of the guidelines; Sen. Manchin has signed on to that letter. Rep. Capito has added her name to the letter on the House side as well.
"Renee did a great job explaining her work and the Part D guidance issue," said Capito legislative director Adam Tomlinson.
Bledsoe said she asked each of the congressional representatives about their hospice experiences. Realizing that many were relatively young professionals, she listened to their stories about their grandparents, parents, other family members and friends.
"I told them that as a crisis care nurse I care for people of all ages," she said. "They seemed as eager to share their stories as I was to tell mine. Everyone could relate to what we do."
As for her trip to Washington, Bledsoe says that she remains neutral when it comes to politics, but she feels passionate about the work she does and was glad to be able to share the message about hospice with the staffs of the senators and congressional members. "Talking about hospice and what we do is easy for me, because hospice makes a difference and I want people to know that we are here for them if they or a loved one should need our help."
And she was able to listen to their stories as well.
For more information about Hospice of the Panhandle's services, call 304-264-0406.
Hospice Nurse Visits Capitol Hill08/08/2013
MARTINSBURG – When Barb Mason was asked if she was interested in making a trip to Washington, D.C. to visit West Virginia’s congressional delegation on Hospice Advocacy Day, she was only the slightest bit hesitant – after all, providing excellent nursing care is her forte, not speaking to congresswomen and senators. Two days after returning she calls the trip "The best thing I’ve ever done.”
Mason has been a registered nurse for Hospice of the Panhandle for the past 4½ years. During that time, she’s seen many changes in the organization, in federal regulations, and as a result of sequestration. She understands that the agency, like many other hospices around the nation, has had to adapt to the changing Medicare landscape and tighten its belt. But she also understands one thing hasn’t changed - that patient and family care is delivered competently and compassionately.
"I just love hospice work,” Mason said. "There’s so much value in what we do.”
Before coming to Hospice of the Panhandle to care for patients who face life-limiting illness, she worked on the obstetrics ward at Berkeley Medical Center.
"Some people thought it was an about-face in what I did, but I really saw lots of similarities,” Mason said. "Taking care of those at the beginning and the end of life is such a privilege.”
The focus of Mason’s visit in late July, coordinated by the National Hospice and Palliative Care Organization (NHPCO), was to spend time with congressional representatives, or their staffers, and tell the stories of hospice. Mason traveled to D.C. on July 29, meeting with NHPCO representatives and hospice staff from all over the U.S. That day, she and other workers brainstormed ideas of what to share with congressional staff.
"The following day, I shared two stories – one of a 5-month-old baby who I took care of, and the other about a 61-year-old man,” she said. "People don’t often think of us taking care of babies, but we do. And we made such a difference in that family’s life.”
The 61-year-old had been discharged to hospice from John Hopkins and died just hours after being admitted to the program. Mason explained to congressional staff how devastated the gentleman’s wife was, and how hospice helped her through an incredibly difficult time.
Mason originally was supposed to visit congressional staff from Sens. Jay Rockefeller and Joe Manchin’s offices, as well as U.S. Rep. Shelley Moore Capito. When she got to the brainstorming session the first day, representatives told her that no other hospice staff from West Virginia opted to attend advocacy day. So at the last minute, Mason added two other offices – U.S. Reps. David McKinley and Nick Joe Rahall - to her list.
"I had to hustle to get to all of them, but I made it,” she said. She added that all the staff members, as well as Rep. Capito, who met with her personally, were supportive of hospice.
"They (the congressional staffers and Congresswoman Capito) all had their own hospice stories that they told me,” Mason said. "Every place I went…I became less and less nervous because people were telling me what their experiences were.”
Mason, who hadn’t visited the nation’s capital since she went on a sixth-grade field trip, said the experience left her "beaming” and proud of her life’s work.
"It’s nothing to take lightly,” she said.