Fearless Caregiver's video youtube.com
Tuesday, April 27, 2010
Hospice Volunteer Training Online - Choosing the Path of Service
ATTENTION: VOLUNTEER COORDINATORS
Your hospice agency can use this program to train your hospice volunteers on your own personalized site.
No set up fee
Free technical support
Site updated.
Sunday, April 25, 2010
Larry Beresford: Are Hospice Enrollments Declining?
Two recent web postings pose the question: why are fewer patients enrolling in hospice? That's a provocative question for a hospice industry that has known nothing but upward growth. But I'm not sure they answer the question: Are hospice enrollments declining? If they were declining now, we might not see conclusive data to prove it for another 12-18 months.
In his blog Palliative Care Success, Tim Cousounis says "The question why are referrals to hospice slowing? seems to be making the rounds these days," and he attributes the trend to perennial misconceptions about hospice coupled with more recent vitriolic attacks on hospice care such as the notorious "death panels."
Howard Gleckman, senior research associate at the Urban Institute, has a Feb. 18, 2010 column at Kaiser Health News that asks the same question. "Suddenly, many hospices are admitting fewer patients. Others are increasingly caring for people for just days or hours before they die." Gleckman points to a bad economy and "Medicare rules that unintentionally discourage doctors from referring all but those who are about to die."
The problems of misunderstanding, misconceptions and mistrust of hospice care by people confronting hard choices at the end of life have been around throughout the history of hospice in America, even as the number of people receiving hospice care has steadily grown, up to 1.45 million in 2008. Physicians' reluctance to bring up the "H" word with their terminally ill patients has been well-documented. The second-guessing of hospices' enrollment decisions by Medicare has also intensified recently, but is not a new phenomenon. A similar round of government scrutiny occurred in the mid-1990s. And still the trends of the number of hospices, number of patients served and total Medicare outlays have pointed steadily upward since the first U.S. hospice opened in 1974 and since Medicare began paying for hospice care in 1984.
I contacted a couple of leading hospice executives to ask them if the declining enrollments trend is true. One said that hospice patient census fluctuates up and down for all sorts of reasons, but that his agency's is up, after a sharp drop in 2008. But Samira Beckwith, CEO of the highly successful Hope Hospice and Palliative Care in Fort Myers, Florida, responds, "I think that everything [Gleckman] says in his article is true." One of the problems, she says, is that America's hospices still have not successfully communicated the idea that hospice care means "living" as fully and as well as possible until death comes. Instead, Americans have learned a little bit about hospice and believe it means "they have to die really soon if they say yes."
The MBAs who run fast food or pharmacy chains are taught that when your company or your industry stops growing, it is already dying. But is that the right model for a service designed to promote compassionate, individualized, quality of life-promoting care for dying patients and their families? Shouldn't hospice's goal be to offer a meaningful option to all those who might need it and want it, and who might qualify, according to the rules of those who would pay for it, as being terminally ill -- rather than just continuing to grow? And if there is a current decline in referrals, given the recent proliferation and rampant competition of mom-and-pop hospice providers, particularly in certain metro areas and in the states of Alabama, Mississippi and Oklahoma, perhaps what's happening now is what the economists might call a necessary market correction.
Wednesday, April 21, 2010
The Wednesday Letter
The Wednesday Letter
I found it again today. That moment of contentment when you know that all is right with the world and you are doing exactly what you are destined to do at the moment. The sadness of the day, the tension of certain parts of it, were enough to make someone ask, “how do you work in hospice?”.
Years ago I would have looked at this day and prevented the experience if at all possible. Today I cannot think of any career that I would rather pursue.
A prospective hospice patient asked me to let him wait a couple of days before he gets his feeding tube. His plea reminded my of my child asking me to not make him take his medicine when he was very young. I thought my heart would break. I told him the decision was not up to me. He said he would try to eat more and then said he had already been eating more.
I looked at him, barely a trace of a man due to the low weight. He had not actually spoken to me but wrote each word on a clipboard full of paper. His throat cancer was causing a lot of hindrances besides the physical pain. In a moment of a silent, passive tantrum, he wrote, “I am going to die anyway”.
I assured him I would speak to his oncologist and relay his wishes. Like a rubber duck at the carnival I went back and forth not only with the doctor's assistant and the patient but also with my emotions. There was no prize printed on me, just the activity of running back and forth with no indication of a change in direction. It was the patient's right to refuse any treatment. The medical advise was that the feeding tube would be a comfort measure and a way to provide enough nourishment to prevent the burning, painful hunger that would ensue. I am not sure if I had the right to act as the patient advocate or if I had the intelligence to act as the medical professional's voice. I just wanted to help and didn't know how.
I explained to the man how his doctor wanted him to be comfortable. He nodded in understanding. I at least was able to assure him that the other procedures that had been suggested could be decided upon later. Other suggestion included pulling his teeth, surgery to his neck and back, etc. As the patient said, “I am going to die anyway”.
I was caught right in the middle of the tug of war that is played at the end. I had to step back and think whether the plans were beneficial or causing suffering. Why is death not a clear cut path of being here and then not being here. There are always complications.
Then I remembered.
Nothing in hospice has to be permanent. He could start or stop whatever he wanted to. I actually got stuck on a decision when the whole theory behind comfort care is to know there is no permanent decision. A thought today can be an activity tomorrow or a long forgotten plan by next week. That's why so many people do not choose hospice – the permanence of non-doing; the perception that nothing more will be done.
One other lesson occurred when I found myself being judgmental. I said, “I bet you're ready to get out of here, aren't you?” referring to the ICU room where daylight and dark are places on the other side of a shaded window. The man just shrugged and I was amazed. How could I assume he wanted to go home? Here he had people who cared for him. At home he would be basically alone.
On the way home from the consultation, I was entertained by intimidating mountains and humble valleys. Birds flying in a “ring around the roses” fashion while they hovered over my path. The late afternoon sky looked like a painting of perfection and I was feeling totally gratified for the experience I had minutes earlier.
I know why I do the type work I do. To help people find their way and sometimes to remind me that I will always have lessons to learn.
On a clipboard in a hospital room tonight, a man wrote a note to me that said, “Thank you. You did help me.”
Perfect contentment.
Tuesday, April 20, 2010
LESSONS FROM HOSPICE #1 « Luann Udell
When someone is going through something profound and difficult, sometimes all that’s needed to make it bearable is the presence of another human being. A hand to hold in the dark. The soothing rhythm of someone breathing along with you.
It’s been a year since my initial training as a hospice volunteer. An amazing year.
I’ve had several assignments–clients–since then, too. As powerful as the training was, putting it into action is even more so.
As a “recovering fixer”, I was not surprised that the hardest thing to do as a hospice volunteer is…..
Nothing.
They told us that, they warned us. I thought I got it, too. (Remember how I let go of being full of knowing…?)
It was harder than I thought!
Every time I felt compelled to “do something” or “fix something”, it always became clear that was not my task.
Troubled family relationships? There’s a hospice social worker for that. Pain and disability? There’s a hospice physician and a hospice nurse for that. Light housework, feeding, cleaning? There’s a hospice nursing assistant for that. Questions about the soul, heaven, the afterlife, whether there IS an afterlife? There is always their minister or priest, or the hospice chaplain for that.
“Doing” was very hard to let go of.
As a hospice volunteer, all I had to do was be there.
Because that is what a volunteer does. We just show up. Sometimes, all we do is sit.
If we need to be there but the client doesn’t want us to–say, a spouse or family simply need respite care–we read a book in another room and simply give peace-of-mind to those who just need to get out for a cup of coffee or a haircut.
If the client asks for a volunteer and later they change their mind, then we come for a little while–then leave.
If the client simply wants someone there to hold their hand, that is what we do best.
We can be the most expendable part of the team, or the most important, for a few moments, a few days or few weeks.
But here’s what’s certain–it’s impossible to try to be the best.
It’s very hard to be the best “be-er” in hospice care.
In a world where we are encouraged to always be our best (like the sad little refrain in Joss Whedon’s TV series Dollhouse), it is very hard to let go of that.
Even as I urge myself and others to recognize the creative spirit in ourselves, to nurture the skills, talents and passion within, it was profound to learn another truth:
Sometimes, all you have to be is….human.
Was it boring? Never.
There is something deep and real about serving in this way. I will have to work my way toward recognizing what that is over the next few months…or years.
Was it depressing? Not really. There is something about being allowed into this person’s life, at this time, with all the clarity that brings to your heart, that made it always poignant, and often exhilarating.
And oddly, I think it made me cherish my art all the more, even knowing that it could be taken away from me in a heartbeat. Even knowing (because I’ve seen it) that there will come a day when I would leave it all behind without a thought, without a regret.
So the first gift of hospice is to recognize the power of simply being.
Tomorrow I will share another gift of hospice.
Hospice Volunteer Training Online
Who Benefits from Online Training?
The course is perfect for anyone wanting to know about the hospice philosophy of care:
- Those desiring to be of service to others
- Medical Professionals
- Church Members
- Clubs and Civic Organizations
- Long Term Care Staff
- Individuals and Caregivers
- Students
- Busy professionals that can't attend full day training sessions
Certificates are available online at no charge after completion of the course.
Hospice Agency information: http://www.volunteertrainingonline.com/hospices/
Course site: http://www.volunteertrainingonline.com/courses
Subscribe to:
Posts (Atom)
Posts
