Saturday, January 29, 2011

Woman's Life Refutes a Hospice Myth - US News and World Report

By Dennis Thompson
HealthDay Reporter

FRIDAY, Jan. 28 (HealthDay News) -- Vailia Dennis says she is living proof that entering hospice doesn't mean you die on anyone else's timetable.

Dennis, 91, of Rancho Bernardo, Calif., signed up for hospice care 6½ years ago, after she was diagnosed with a fatal heart condition. At the time, she was told she'd have six months to live.

"The illness, the heart condition that I have, is one that should have and could have caused my death a long time ago, and just hasn't done it up until now," Dennis said. "Nobody knows why, and that's OK by me."

Dennis was 85 when her doctor gave her the bad news.

"The doctor wanted me to go in for open heart surgery," she said. "I refused, and I thought it made a lot of sense. I've seen people my age go in for open heart surgery and, when they come out, they aren't the same. They are more fragile."

Dennis promptly called San Diego Hospice and signed up for its care. She already knew that hospice care was what she wanted and needed.

"I have had three members of my family die at hospice," she said. "Hospice, to me, is like handing my problems to an angel. That's the way I feel about hospice."

Dennis still lives at home. Nurses and home health aides come by to check in on her condition and help her with household chores. A chaplain, one of her best friends, visits weekly.

"I didn't want to leave my home," she said. "My home's my home. That's where I'm staying."

She does struggle with symptoms from her heart condition. She experiences lightheadedness and eye impairment, has a hard time catching her breath and suffers head pain. When the symptoms come over her, she says, she sits still and takes oxygen and, before too long, feels better. She also has sustained some short-term memory loss as the heart condition starves her brain of oxygen.

But she's also having a lot of fun. She sits at her computer most days and writes recollections from her life. Other days, she's visited by family and friends.

"People drop in or I get wonderful phone calls, and I'm enjoying my life," Dennis said. "I'm not aware I'm doing that. It's just the way it is."

Hospice workers haven't had to help her family deal with their feelings about her death yet, Dennis said, but knowing that hospice will be there for them once she's gone is comforting.

"After death, hospice is so wonderful," she said. "The family doesn't become nonexistent after they've lost a loved one. There is loving care given to these people. When my uncle died, his wife sat by his bed and she would not leave his bed and would not stop holding his hand. They must have left her there for six or seven hours, with no one interfering."

When asked her reflections on her own impending death, Dennis seemed genuinely surprised by the question.

"I haven't even considered that," she said, chuckling. "I just keep living. I haven't considered it at all. There are no answers to why I keep going on, but I do. I know I am in the last stage of life, and that death is much closer than it has been. Am I frightened? No. Am I curious about what happens next? Yes -- but I'm not afraid."

"There is no reason to feel fear," she said. "Fear only makes you unhappy. It destroys what could be a day or two of pleasure. There are real pleasures that do exist, even if you are dying."

More information

A companion article offers information about hospice care.

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Echols: Hospice volunteers make a difference » Times Record News

Hospice of Wichita Falls offers guidance and support to individuals with life-limiting illnesses. In addition, families are helped as they travel down a path of what is often unfamiliar territory. "What makes Hospice of Wichita Falls so special in addition to their highly trained staff and excellent care," said one family member, "is the volunteers. They were all so kind and compassionate when our loved one was on hospice care."

Visitors only have to enter the doors and take a few short steps at Hospice of Wichita Falls before they run into a volunteer who is on a mission to meet a need. When one such volunteer was asked, "How can you possibly volunteer in such a painful area of people's lives? Doesn't it make you feel depressed knowing the people you are helping may not be here for long?" The volunteer smiles not only with her lips but with her eyes and says, "Hospice doesn't mean that death will occur soon. Yes, they focus on caring rather than curing but I can think of no better place or group of people I would want to have care for me or one of my loved ones than those at Hospice of Wichita Falls."

Another volunteer simply says, "How can I not serve in such a wonderful and caring place? When you volunteer at Hospice of Wichita Falls you meet extraordinary people. Some are employees who give of themselves day in and day out. Other times it may be a patient or a family member who needs comforting or just a cup of warm coffee. Sometimes all it takes is just being there or lending a listening ear. Besides, it challenges my spirit and fills my heart with warmth knowing I can help make a difference in another's life whether it's long-term or short."

Hospice of Wichita Falls has more than 200 volunteers that give of their skills in a variety of ways. Some volunteers are trained to work with patients and their families, allowing caregivers some free time to care for personal issues or simply receive some much needed rest. Other volunteers help with mailouts or work in the center helping wherever needed. They volunteer because they want to make a difference and they truly do. Our volunteers play an important role in making sure Hospice of Wichita Falls runs smoothly.

If you would like to help make a difference and join our wonderful team of staff and volunteers, please call Cindy or Mona at 940-691-0982. Our next training is from 1:30-4 p.m., each Thursday, March 10-31. Volunteering at Hospice of Wichita Falls is a gift to our patients, families, and friends as well as to our staff and the community.

Posted via email from Hospice Volunteer Training Online

Tuesday, January 25, 2011

Physician-author Gary McCarragher Launches Site to Promote End-of-Life Care and Offers Video Support for Terminally Ill and Their Caregivers

Dr. Gary McCarragher

Quote startProviding compassionate, end-of-life care defines the very essence of the universal anthem, 'Do unto others.'Quote end

Tampa, FL (PRWEB) January 25, 2011

Dr. Gary McCarragher, a hospice physician and writer, announced today the launch of his new Web site "Hospice - Care for Life" http://www.hospicecareforlife.com. The site offers a wide range of help for the terminally ill, their families and others who provide care and support.

The site is launched just as the United States' new healthcare law goes into effect in the midst of a national debate on the subject. McCarragher is an advocate of patients having voluntary consultations with their physicians to discuss advance care planning, consisting of advance care directives and end-of-life care planning. McCarragher was interviewed by NPR on the subject. His opinion pieces have been featured in the St. Petersburg Times and The Tampa Tribune.

McCarragher, http://www.garymccarragher.com, a native of Canada, is one of the few hospice physicians making himself available to the online public to answer questions about end-of-life care, advance care and grief following the death of a loved one.

"At the Hospice - Care For Life Web site, patients and their families will find a wealth of valuable information touching on all aspects of hospice and palliative care," McCarragher said. "Providing compassionate, humane, end-of-life care defines the very essence of the universal anthem 'do onto others.' If we dare to celebrate the value of human life and the human spirit, then we are duty-bound to each other to humanely administer to the dying. Hospice magnificently embodies these sacrosanct values. For the care and compassion it provides to our dying patients, in their most vulnerable time of life, I believe Hospice is among the most magnificent organizations ever created for humankind."

In addition to special areas dedicated to patients, families, healthcare providers and spiritual advisers, Dr. Gary McCarragher's Hospice - Care for Life site also includes articles from such luminaries as Dr. Ira Byock, author of Dying Well: The Prospect of Growth at the End of Life, who has been featured on CBS' 60 Minutes. There also is an insightful question-and-answer conversation with nationally recognized hospice expert, Dr. David McGrew.

While most of the information is dedicated to helping patients understand their choices of care and focusing on compassionate care through the end of life, the site also includes information for those who are grieving after the death of a loved one and includes a link to a national hospice advocacy network.

McCarragher, a graduate of renowned McGill University, teaches college-level anatomy. He performs in community theater and supports BLOOM Africa, a nonprofit charity supporting orphans.

McCarragher's Web site already has drawn praise from national experts on hospice and palliative care.

"I am delighted to read of your passion and the Web site you are creating. I truly support your efforts. Thank you for all you are doing," said Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, who has appeared on NPR's Talk of the Nation and been quoted in USA Today, among other publications.

Dr. David McGrew, president of Hospice & Palliative Physician Services of HPH Hospice, and a founding member and past president of the American Academy of Hospice and Palliative Medicine, said, "In a society characterized as 'death denying,' it is important to help individuals find answers to questions about end-of-life care. I applaud Dr. McCarragher's new Web site for its mission to connect patients and their caregivers with helpful information and compassionate support networks."

In addition to his medical career, McCarragher is working on a novel involving a physician who faces a crisis that threatens to end his career and jeopardize his personal relationships. Excerpts of the forthcoming novel are available on YouTube.

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Saturday, January 22, 2011

The Apple Farmer and the Hospice Marketer

As a young girl, Daddy would often have conversations with me about good customer service.

He spoke to me as though I had already chosen the career of marketing before I had even reached the age of 10.

Daddy believed in leading by example and often

displayed the courtesies of removing his hat as

he entered a room, opening doors for others, and

always responding with "Yes sir" or "Yes Ma'am"

as he spoke to youth and elders alike. 

"Try this apple" he would say to the customer. 

When the purchase was complete, I watched the

customer leave the premises of the apple house

with an overflowing bag.  If a dozen apples were

purchased you could bet at least 13 apples were in the bag.

My parents encouraged me with words of "you can be anything",

"you are no better than anyone else and no else is better than you",

and "I love you".

Daddy would often let me play with balancing the checkbook.  I

would fret as I saw a near 0 balance and feel relief as deposits

were figured into the scenario. 

Looking back, I can only surmise now that this early childhood

education has played a significant role in who I am now.

I love great customer service, I take great pride in good financial

stewardship (I am truly debt free and no one really believes that

except my husband), and I wonder sometimes if my purpose in

life is to be of service through understanding and encouragement.

In case you are in health care, I strongly suggest you find an

apple farmer to mentor you in your career.

They truly know how to plant the seeds, nourish growth and

celebrate with gratitude the yielded crop.

 

 

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Thursday, January 20, 2011

Change of Address: 10 Great Sites for Hospice Care and Why

When someone you care for is approaching the last days of their life, you will want those remaining days to be as comfortable as possible. That is what hospice care is all about. Whether you are in that position now or simply want to be informed ahead of time, the following sites can provide plenty of information and answers to your questions.

  1. Hospicenet.orgThis site is filled with information. It allows you to search for hospice providers. It has information for patients and caregivers. It also has information regarding hospice for children and dealing with bereavement. An excellent non-profit site.
  2. Hospicefoundation.orgThis is the official site of the Hospice Foundation of America. In addition to providing resources for patients and caregivers, this site has resources, classes and training materials for hospice providers and clergy. You’ll find links to all things hospice on this site.
  3. Cancer.orgThis is the site for the American Cancer Society. Since cancer is one of most common reasons for the use of hospice care, the American Cancer Society provides plenty of helpful information regarding hospice. Information like how to choose a hospice provider, who pays for the cost of hospice and much more.
  4. Thehomecaredirectory.comThis site allows you to search for home care services by location, first by state and then by city. Once you receive the list of providers in your city, you are able to request information online from the providers. The site provides a very thorough request form that allows you to customize your information request to meet your specific situation.
  5. Mayoclinic.comThe well known Mayo Clinic in Rochester, Minnesota provides some great information on hospice care. The site has a very thorough listing of criteria you should be looking for in a hospice provider. The Clinic also provides information for those wishing to serve local hospice providers in a volunteer capacity.
  6. Webmd.comWebmd is a great site for any medical information and hospice is no exception. The sites starts with an overview that explains exactly what hospice is, who it is for and the general services to expect from hospice providers. That is just the beginning to the information to be found on this site. The hospice section continues with more detailed information under additional subtitles.
  7. caringinfo.orgThis is another non-profit site that provides resources for all different stages of life and care.  It has information for those simply wanting to prepare for the future, individuals in end of life situations, caregivers and even information for employer’s regarding ways they can be supportive of employees dealing with their own or a loved one’s final days of life.
  8. nhpco.orgThis is the site for the National Hospice and Palliative Care Organization. There is plenty of information for everyone on this site but it appears to have some of the best resources for hospice providers. It includes links to education and conferences and current news regarding hospice care.
  9. nahc.orgThis is the official site of the National Association of Home Care and Hospice. This site is mainly focused on providing resources to hospice providers. It includes information regarding current legal issues, pending legislation and educational opportunities for hospice providers. It does also include information for consumers and media as well.
  10. Eldercare.govThis site is sponsored by the U.S. Department of Health and Human Services. It provides assistance in finding services regarding care of the elderly in specific locations. These service listings include hospice care but also include several other services related to caring for the elderly that may be helpful in a hospice situation as well.

End of life situations are difficult for any family to deal with. Becoming informed about the resources available to you and your loved one can certainly ease some of the stress involved.

Posted via email from Hospice Volunteer Training Online

Wednesday, January 12, 2011

Can Good Care Produce Bad Health?

http://www.jhartfound.org/blog/?p=2765 Can Good Care Produce Bad Health? Amy Berman Tuesday, January 11, 2011 15:19 For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was. My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important. © iStockphoto.com/belterz At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia. The building was beautiful, the staff attentive. They even assigned a nurse, whom they assured would follow me throughout my course of care. I had no doubt that the care would be top-notch. Everything changed when my mother and I sat down with the physician. He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach. “All of my patients use this protocol,” he said. I was shocked. “Does this mean I could get better?” I asked. “No, this is not a cure.” he answered. “But if you respond to the treatment, you might live longer, although there are no guarantees.” My goals are to maximize my quality of life so I can live, work, and enjoy my family with the least pain and the most function. Would I undergo a year or more of grueling, debilitating treatment only to live with spinal fractures if the cancer progressed? Would the treatment strip me of the quality of life I enjoy now? I wouldn’t be cured by the treatment. Would I get the possibility of quantity and no quality? I pressed him. “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.” His brow furrowed. “Well, you don’t want to look at the cancer, do you?” He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary. Right now, I feel fine. I can work. I am pain free. Did I want to trade that for a slim chance of a little extra time (no guarantees, of course)? Would they be years of living, or years of suffering? “But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.” He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied. Inwardly, I shook my head. Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease. To me, there were real drawbacks. Undergo aggressive therapy that might buy me a longer life…at what cost? I might never recover my health for the limited period of time I might have following the aggressive treatment. This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival. He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones. Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing. I returned to my original oncologist. I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment. What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.” We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.

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Tuesday, January 11, 2011

Ethics: When the Patient and Family Members Disagree | Pallium India

The patient in the next bed

credit: mynameisharsha

An article by Dr Robert L Fine from Dallas, Texas, USA in the Journal of Pain and Symptom Management (Vol 40, No.4, October 2010) highlights the importance of patient-centered care.

He asks, what would you do when the patient who has gone through dialysis for many years, at the end of his life expresses a wish not to be resuscitated and then becomes too weak to argue, and the family insists on resuscitation for “religious reasons”?

The obvious answer would be to go by the patient’s wishes, but it is not an easy thing for the team to do, when faced with the angry family. (In India, often, the family would simply take the patient away to a high-tech hospital in the face of such confrontation).

Dr Fine suggests that often physicians “acquiesce to the most insistent voice in the room”. The patient is weak and is less liable to be heard any longer!

He says, ‘among the rationalizations… for such avoidance behaviors are, “I’m getting paid to do the wrong thing, but that’s the system we live in and it’s not my problem to fix”, or the more cynical, “The patient should have chosen a better family”. Another common excuse….is “Dead patients don’t sue, but angry relatives do”.

The author goes on to explain the importance of keeping the focus on the patient. Taking decision-making away from individuals to “ethical committees” can help resolve the problem. Indeed!

Keeping the Patient at the Center of Patient- and Family-Centered Care

Abstract – The practice of palliative care typically refers to the focus of treatment as the patient and family. Tending to the needs of both patients and their families is usually good, but what should clinicians do when they perceive the best interests, needs, or treatment preferences of the patient are in conflict with those of the family or other surrogate?

Physicians may be able to suppress the inevitable moral cognitive dissonance of such circumstances, write orders, and walk away, but other health care professionals, especially nurses, may not have it so easy. This article suggests practical steps to obviate conflict in such circumstances before offering an ethical analysis focusing on notions of autonomy, beneficence, and true caring for patients, especially those near the end of life.

The limitations of surrogate decision makers are considered and legal liability concerns are briefly explored, ultimately leading to the conclusion that keeping the patient at the center is sine qua non of patient- and family-centered care.

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