LEXINGTON, Ky. (Nov. 30, 2011) — A study led by the University of Kentucky researcher Elaine Wittenberg-Lyles found that hospice family caregivers are "second order patients" themselves and require their own unique care needs.
The study, published in a recent issue of Qualitative Health Research, assessed the individual stressors that caregivers experience. The researchers recorded discussions between hospice caregivers and the intervention team. The caregivers were asked to identify and describe the most pressing problems or concerns they faced.
The study enrolled hospice caregivers who were 18 years of age or older and who did not have functional hearing loss, had mild to no cognitive impairment, and had at least a sixth grade education. In addition, all participants had to have access to a standard phone line. In total, the team collected discussions from 81 participants. The study was funded by the National Institute for Nursing Research.
Using a theoretical framework called Assessing Caregivers for Team interventions (ACT), the researchers coded participants' responses in one of three categories: primary stressors, which included talk that related to the performance of caregiving tasks; secondary stressors, talk about the personal impact of performing caregiving tasks; and intrapsychic stressors, talk about their thoughts, feelings and awareness of the caregiving role.
The ACT framework has been proposed as a way to understand caregiver strain and develop customized caregiver interventions to positively affect the caregiving experience and improve outcomes. The goal of the study was to describe the variances among stressors, targeting specific concerns for caregivers.
Wittenberg-Lyles, who holds a joint appointment in the UK College of Communications and the UK Markey Cancer Center, says the study further proved that caregivers are like patients themselves and should be routinely assessed for these stressors so that interventionists may help them with personalized resources and coping strategies.
"It doesn't matter how well educated you are," said Wittenberg-Lyles. "When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support."
Hospice is provided to patients who have an estimated life expectancy of six months or less. About 69 percent of hospice patients in the U.S. receive care at home from a family caregiver.
In Wittenberg-Lyles' study, nearly one-third of the hospice patients had a cancer diagnosis, and 21 percent had a primary or secondary diagnosis of Alzheimer's disease or dementia. Nearly 43 percent of caregivers were adult children of the patient, and roughly one-third were spouses/partners. In addition, an overwhelming majority of caregivers were women (79 percent).
Source: University of Kentucky
Wednesday, November 30, 2011
Family Caregivers are "Second Order Patients"
Sunday, September 18, 2011
Hospice for Heroes Motorcycle Run
Go online at http://rabuncountyveterans.com to donate in honor or memory of a veteran, or sponsor by joining us on the 100 mile motorcycle ride on October 15th, 2011 at the Clayton City Hall parking lot at 10 a.m. All registered riders/passengers will get a free lunch and t-shirt and a magnificent tour of the Northeast Georgia mountains during beautiful leaf season.
Call the Rabun County Chamber of Commerce for more information at 706-782-4812
Friday, August 26, 2011
Tuesday, August 9, 2011
What's not to "Like" about a dream?
Help raise awareness of hospice services so those in need benefit earlier from great care that focuses on living.
Go to the Regency Hospice - Hiawassee Face Book page and click on "Like".
Easy, free, and helpful. You can't beat that combination!
I think after you see the pictures of the dream come true for an 84 year old lady, you can't help but "Like" this page.
Go to this page and click "LIKE"
Sunday, August 7, 2011
Do you really think I keep doing this because I want to be depressed? Give Me A Break!
Great initiative by volunteer coordinator to enhance her volunteers' experiences. I love the quote,
“Do you really think I would visit dying people week after week for years so I could be depressed? Give me a break.”
Visit the blog at: http://janshospicevolunteers.wordpress.com/
Saturday, August 6, 2011
Healing Grief | Personal and Professional Insights from Robert A. Neimeyer, PhD
Thanks to @jen_c_taylor for opening the door to this video through her website: http://www.livinglifedyingdeath.com/
Tuesday, July 26, 2011
Hospice Insight from Volunteer Trainees
There have been times when the hospice volunteer training program took a back seat to my other responsibilities. I sat down tonight to grade the final essays of some recent trainees and the most amazing thing happened.
The tiredness of the day took a turn. I was almost in tears just trying to decide on what to cook for dinner and then I read the essays.
"I wish I had know all this when my mother was dying"
"I will be a better communicator"
"I am a nurse but also a volunteer"
"I am a street preacher and want to do as much as I can to help others".
Service, Service, Service!
All around my are people doing everything they can to learn about hospice care, enthusiastically wanting to be of service....and I complain of being tired???
I developed the course with many intentions but the results have surprised me many times over. I am continually blessed to read the heart felt statements and authenticity of intention that pours from those who take the course, digest the meaning and deliver a true desire to serve.
I hope I can grow up to take the right path just as they have done. I am truly blessed.
Monday, July 18, 2011
Survey says, "I want to die in the hospital"????
Another point for using hospice. Social workers and case managers can help us as caregivers come to terms with the feelings that we can't deal with the death of a loved one at home.
A social worker once spent time with the wife of a patient who said she did not want her husband to die at home. "Please make sure it happens in a hospital".
The husband said he wanted to be at home but knew his wife could not handle it.
I wonder when we will be able to accept the death of a loved one at home? I certainly don't want to experience it but if my husband wants to be at home when he passes, that is where he will be and I hope he can do the same for me. Fortunately, we are not having to make that decision at this time of our lives so it is a perfect time to discuss it.
What's your thoughts about someone you love dying in their own home?
Saturday, July 16, 2011
When the Doctors Need Doctoring | Psychology Today
My first month as a medical intern, over 20 years ago, I learned many important things: how to distinguish heartburn from a heart attack, how to treat pneumonia and alcohol withdrawal, how to perform a spinal tap. What I did not learn was how to manage the stress of carrying an enormous workload and great responsibility while getting little sleep and eating a diet consisting of greasy food from the hospital cafeteria and candy bars from vending machines. Stress management was not taught because the stress of being a physician wasn't acknowledged. When we were tired, anxious, sad, or sick, we just kept working.
Like athletes and soldiers, we physicians pride ourselves on working through injury, pain, fatigue, and assorted conditions that might sideline other professionals. For decades, doctors have sacrificed their own health and comfort for the sake of their patients, an ideal that has been reinforced by various media, from the embittered and overworked physician in the 1950s film The Last Angry Man to the scores of hard-drinking medical professionals in Scrubs, House, and Grey's Anatomy.
It would not surprise most people to learn that doctors have higher rates of suicide, alcohol and substance abuse, and job burnout than most people. In the past we might have written off these problems as a natural consequence of doctors working long hours in a highly stressful job, an occupational hazard of people caring for sick people, regrettable but unavoidable.
Doctors could learn a lot about stress reduction from caregivers. Shouldn't someone develop a meditation just for health care providers?
Thursday, July 14, 2011
The truth behind the hospice numbers | Georgia Health News
Given the ever-escalating costs of care for those in the last year of life, it’s no surprise that Congress, MedPAC and the Centers for Medicare and Medicaid Services continue to search for ways to curb those costs. What is surprising, and in fact perplexing, is the focus on the one aspect of end-of-life care that we know saves money and improves the quality of those who receive it.
In the article “Hospice problems raise concerns on oversight,” Georgia Health News reporter Andy Miller points out the significant growth in the field and raises concerns of oversight. Yes, costs and access have increased significantly. However, a deeper understanding of what lies behind the numbers must be part of the discussion.
Nationwide, the number of patients served annually by hospice has grown from 700,000 in 2000 to more than 1.5 million. This growth reflects that more Americans are opting for compassionate, comprehensive, quality care at life’s end. Hospices are meeting the needs of those in their communities.
Back in 2000, for every person who received hospice care, there were two others who would have benefited from it but did not get it. Ten years ago, the majority of those served by hospice had some form of cancer, and their illnesses followed a fairly predictable path. Today, less than 40 percent of hospice patients have cancer, and hospice providers are serving more patients with complex illnesses, such as late-stage dementia, who have uncertain trajectories, making prognosis much more difficult.
A private residence remains the primary location of most hospice care in the U.S. However, hospices have been working diligently to reach people in need of care wherever they are. Hospice is available to people in nursing homes, assisted living facilities, hospitals and residential facilities. Research out of Brown University demonstrates that having hospice care in the nursing home not only benefits hospice patients but increases quality throughout the nursing home, an important factor during these times when quality is of increasing importance.
Medicare spending on hospice has risen to $12 billion annually, or 2 percent of Medicare’s budget. These are dollars well spent. Independent research out of Duke University has shown that for every Medicare beneficiary who utilizes hospice, Medicare saves about $2,300. In an atmosphere of reimbursement cuts, with average net margins of less than 3 percent (according to MedPAC statistics), the hospice community remains a fiscally responsible provider of cost-effective, quality health care.
The past decade has seen an increase in the number of hospices nationally. With growth, we have witnessed a handful of providers that have ignored compliance standards, or even commit fraud. However, the actions or experiences of a few should not be used to paint an image of the entire industry.
As in any sector of health care, cases of fraud can be found. Expecting hospice to be immune to these challenges is unrealistic. Yet the hospice community, led by the National Hospice and Palliative Care Organization, has acted quickly and decisively to respond to these issues, providing education, mentoring and resources to help hospice providers succeed in their mission and duty to deliver high-quality care to those in the last months of life.
As was reported by Georgia Health News, hospice leadership has repeatedly called for more consistent and timely oversight of providers. NHPCO continues to lead the field in supporting legislation introduced in the Senate mandating CMS surveys of hospice programs at least as frequently as every three years.
Well before health care reform, a voluntary Quality Partners program, with self-assessments and other resources and tools to assist providers with quality measures and performance improvement, was created by NHPCO.
In addition, NHPCO has consistently supported the “aggregate financial cap” that places a limit on the amount of Medicare payment for all Medicare beneficiaries served by a hospice in a year.
Recently, concerns over the growth of for-profit providers in the field have surfaced in the media. Hospice – which began as a volunteer-led, grass-roots movement in the United States in the late 1970s – has moved beyond the all-volunteer organization. Now the hospice community reflects the broader health care industry in the nation. NHPCO research shows that patients served by both for-profit and non-profit hospices receive high-quality care.
Attention has also turned to patients who have received long lengths of service. (NHPCO research shows that in 2009, 11.8 percent of patients remained under hospice care for longer than 180 days). However, MedPAC, Congress and CMS have ignored the other end of the spectrum, offering no solutions to the problems with short lengths of stay – problems that have not changed in a decade.
More than a third of patients cared for by hospices die in seven days or less. When a patient or family receives care for such a brief period, it is incredibly difficult for hospice providers to transform the experience of the patient and family from crisis care to compassionate care.
Every aspect of health care must be reviewed to ensure that taxpayer dollars are being optimized to ensure that people receive the best possible care. But we must ensure that in our efforts to cut costs, we do not unintentionally prevent patients and families from accessing the most comprehensive, cost-effective, patient-centered care – hospice. Individuals who are facing the end of life, and their family caregivers, deserve the best humankind has to offer – and that is hospice.
J. Donald Schumacher is the president and CEO of the National Hospice and Palliative Care Organization, the nation’s oldest and largest leadership organization representing hospice and palliative care providers and professionals.
Enrollment Keys on Hospice Volunteer Training Online
Hospice Volunteer Training Online - VC FAQ on Prezi
A quick demo for hospice volunteer coordinators.
Saturday, July 9, 2011
Discovering the Spirituality of Hospice
Recruitment ads for hospice volunteers consistently proclaim the rewards of helping others. Surprisingly, very little is said about how the volunteer and all the hospice staff are the ones whose spirituality is enhanced once given the opportunity to work with the hospice patients.
There are no fireworks and harps paying tribute to your selflessness as you sit with the dying patient or care for an overly tired caregiver. The magic of hospice lies in the moments of silence. The silence is a tool and the foundation for the act of being present; witnessing the validity of life and the tragedy of broken hearts.
What is Their Story?
Walking into the hospital room, a middle aged woman looked up from her task of feeding lunch to her mother. She seemed startled that I was there. Just a couple of hours earlier this daughter was the one requesting I come speak to her and her father about hospice services for her mother.
Doctors do a fine job of explaining the need for hospice but until the family understands and agrees, nothing will happen in the way of a hospice admission. My job as a hospice care consultant is to go to the family wherever they are - home, hospital, long term care facility - and explain the benefits of hospice.
I have always considered this initial consultation as being the most important conversation in the cycle of hospice services. It can be the end or the beginning of the end of life conversation but without appropriate understanding, the chance to participate in a benefit that increases the comfort and peace a patient and family will feel during this crises can be compromised with the initial conversation.
Walking into the room, the daughter was courteous but distracted. Feeding her mother was not the focused effort although she attempted to make it appear that way. I immediately recognized the daughter was looking at her father. She was fearful about the ensuing conversation and the affect it would have on him. The daughter didn't say it but I could hear her fears with my heart.
The father was an elderly gentleman who was busy doing small tasks like tidying the area next to the hospital bed, straightening the covers over his wife's feet, and intermittent moments of staring out the window. The view was taking his attention. It was not a tremendous landscape or sunset. The view was a memory of him and his wife during a lifetime of living.
I apologized for interrupting the meal and began to back out of the room.
My day had been hectic and started with a change of scheduled appointments. Starting in one county to make visits to doctors to talk about why they should refer to hospice and ending up in an entirely different county to provide a hospice consultation and now I would have to wait. The daughter and father had no idea that this slight change in my schedule included an hour long drive to the hospital and the longer I had to wait the longer it would be before going home. Hot weather, tired feet from following what seemed like acres of hospital hallways to find this patient, and starting to feel the emptiness of my own hunger, I knew my personal agenda could not play a part in this conversation.
All my own issues dissipated when I noticed the man sit on the bed beside his wife as his daughter fed her.
What is their story?
This seems like the magical question that comes to mind anytime I do a consultation. I really want to know who the people are and especially who they thought they once were. While it was true that I was an hour from home, it was also true that this family was an hour from home. We lived in the same county yet I had to drive 50 miles to do the consultation in the hospital. I mentioned the fact we were both quite a long way from home as I was backing out the door and all of a sudden I was invited back into the room and into their lives.
The husband spoke of meeting his bride to be at a a company picnic more than 60 years ago and courting the old fashioned way. He took her as his bride and made her his life. They lived comfortably surrounded by the love of family and friends. There were no words spoken about clinical expectations of hospice and only a few words discussing needs for personal care and nursing assistance. They were open to a chaplain visit but felt they had plenty of spiritual support from their local church and community of friends. The volunteer services would be nice should the daughter or father need to go to town to run errands. I remember wishing I could be their volunteer. There was so much life to value here and the remembrances came so easily.
I grew tremendously that day as I found a way to eliminate by own personal frustrations by asking "what is their story?". The lesson has been with me for every consultation and does not dissapoint me with the resulting answer to the question. This husband could still see his wife as a beautiful young woman who was vibrant, fun loving and his partner in all things. He saw a beauty that I thought I could physically see by the time I left the hospital room. Wrinkles and gray could not camouflage the beauty of this couple even now as the young bride of more than 60 years waited in a hospital bed for her last days in this partnership.
Later that night, I kissed my husband and told him I loved him. I made the kind of wish you make as you blow out the candles of a birthday cake. I wished for us to forever see each other's beauty.
That's what hospice does for you.
Friday, July 8, 2011
Thursday, July 7, 2011
10 Ways to Be a Difference Maker as a Hospice Volunteer
#1 Take the hospice volunteer training program online
#2 Explain your role as a volunteer to your personal health care provider
#3 Find out a patient's most valued accomplishment
#4 Give the caregiver a hand massage
#5 Encourage laughter
#6 Learn - and share - good meditation practices
#7 Enjoy examining spiritual truths - yours and your patient's
#8 Listen intently and learn to revel in silent friendships
#9 Use healing intentions frequently in thought
#10 Share, learn, grow, love - be a hospice volunteer at heart with all your relationships
Aricia LaFrance Blog; Asking for Help
There is a general misunderstanding that you are supposed to know how to do everything on your own. This is an especially pervasive belief among helpers and healers.
Helpers and healers are notoriously bad about being able to receive. Giving – they’re all over that. Nurturing – no one better. But being able to ask for help, let alone accept a kindness – that’s a challenge.
Maybe it would help to know that by asking for help you are almost certain to learn a something new and that will help your clients. You expand your knowledge base when you ask for help. You build community. You allow yourself to feel uplifted and energized – and that’s good for everyone in your life.
A strong sense of community emerges and we’re starting to see how collaborative friendships (doesn’t this sound better than strategic alliances?) help everyone.
When you’re uncertain of your next step, consider reaching out to your community to ask for feedback, advice, ideas and suggestions. Consider asking for help. If you’re a helper or healer you may be shocked at the overwhelming response you get after years of uplifting others.
Let me know how it works out!
This post is a great reminder to seek the balance of receiving and giving.
Letter To The Editor: Hospices Are Serving A Critical Need - Kaiser Health News
Letter To The Editor: Hospices Are Serving A Critical Need - Kaiser Health News
Sunday, May 8, 2011
Friday, April 29, 2011
Dr. Danny Sands: Knowledge is Power
Learn how to reach and engage today's digital health consumers with innovative technologies.
Sample Newsletter. We respect your privacy and never sell or rent our subscriber lists.
Wednesday, March 23, 2011
A New Response to "How Long Do I Have?"
Anyone in hospice service will tell you they have been asked by a family or a patient the question "how long?" and we all have our own personalized responses which most often include?
No one knows without a doubt how long they will live. I could leave this room and be in an accident and lose my life long before you lose yours.
Once familiar with their nurse, a family may here that the time is drawing near. "Better call in the family".
I am completely filled with gratitude and awe for the words spoken by a physician's assistant recently to a patient and his family when confronted with the "how long?" question.
The patient, male, middle aged, and not ready to hear the harsh answer asked the P.A. after a lengthy discussion about his cancer how long it would be (before he dies). The family sat still and the patient waited knowingly and yet also displayed reserve and lack of knowing.
"When you were born, your mother carried you for 9 months before you came into this world. It's time now, son, for you to begin the journey back to the source. It is what it is and you need to prepare to go back there."
While the trajectory of the illness gives the doctor a great clue to how long someone will live, it does not address the appropriate communication to family and the patient at different intervals of the intial news.
Whatever your opinion of this response, I believe there will come a time when a family and patients would find great comfort in such sentiments.
After all, we are all returning to the source; plant, animal, or human we are in that wonderful cycle of life and I am grateful for those who hold our hands on this journey.
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