Posts Tagged ‘terminal illness

The Man in Overalls

Overalls

The volunteer called and said she would not be able to make her regular shift at the reception desk. As the Volunteer Coordinator, it fell to me to sit at the desk that afternoon. It happened to be a very busy day. Four patients were admitted in just two hours. I was frantically trying to keep up when a man clad in bib overalls came in the front door. He looked around slowly and approached the desk. He told me his wife was coming to the Hospice from M.D. Anderson Cancer Center that afternoon. He wanted to know what room she would be in. I gave him the information, offered him a cup of coffee and invited him to make himself comfortable while he waited for the ambulance to bring his wife.

After he got his coffee, I expected him to go into the family room or go to his wife’s room to wait. Instead, he just stood there, looking at me with woefully sad eyes. The silence was heavy. I didn’t really know what to say; lots of things were racing through my mind. I was searching for something brilliant, meaningful, perhaps even profound, to say to make him feel better. I was coming up with nothing when I remembered volunteer training. Maybe this was one of those times when silence was the best choice.

So, I stopped what I was doing, looked at him and smiled, just a little. With a heavy sigh, he put his callused hands up on the ledge and began to talk, very slowly. He talked of his wife’s cancer, of her pain and of his pain, as a result of hers. He talked about his daughter and how she helped so much. He talked about his wife wanting to stay with her sister if she stabilized enough to leave here. He said he really didn’t like staying anywhere except home but right now his wishes didn’t matter much. He said all he wanted was for her not to hurt, be as happy as she could be and make the most of the time she had left. He was willing to do whatever it took, even sleep in a strange bed, if that is what she wanted.

He looked off in the distance, shook his head and told me about the many people he and his wife had helped over the years. These same people were nowhere to be found now that they could use some friendly support. His eyes became teary as he shared how the parking lot attendant at M.D. Anderson had only charged him for one day’s parking after he lost his ticket and told her he had been there for at least three days.

He marveled at how a complete stranger could be so kind when lifelong friends didn’t even call. His voice cracked as he wondered out loud why these people couldn’t just say it was too hard to visit and see his wife so sick. Instead, they said nothing and their silence really hurt. He hung his head, wiped a tear from his cheek and asked where he could smoke. After I told him, he turned slowly and left, without another word.

I sat there quietly thinking about what had just occurred. I felt so privileged to have been allowed to listen as this gentle man poured out his hurts, to me, a stranger. I don’t know why he chose me, except maybe he took the silence that I wrestled with as an invitation to say what had probably been on his mind and in his heart for a very long time. I hope he felt better after he talked. I know listening to him was a gift for me. I learned valuable lessons from that man in bib overalls. I learned never to put off calling a hurting friend, even if I don’t know what to say. I know and I care says it all.

By the way, I also learned not to judge men in bib overalls!

-Patsy Piner, Houston Hospice Volunteer Coordinator

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Is Profit Seeking Trumping Care? Nonprofit vs. For Profit Hospice

The truth is, most people don’t think about hospice at all until it becomes a necessity. The concept of hospice is relatively new in the United States. However, as the number of hospice providers grows, with varying degrees of quality, it’s important to be informed. Hospice places its emphasis on quality of life with care that’s tailored to the unique needs of each individual and their support network. When curative treatments cease to help, the relief of palliative care can bring a new form of hope for terminally ill patients and their families, as hospice services help them make the most of their time together. In 2007, research published in the Journal of Pain and Symptom Management reported that hospice patients lived an average 29 days longer than similar patients who did not have hospice care.

When it came to the United States from England in the 1970s, the hospice movement began as a grass-roots campaign to address the unmet needs of patients with terminal illnesses. The benefits of this care were quickly recognized by the medical establishment. In a 1978 report, a U.S. Department of Health, Education, and Welfare task force noted both the altruistic and practical advantages of government support for hospice care: “The hospice movement as a concept for the care of the terminally ill and their families is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs. As such, it is the proper subject of federal support.” In 1982, Congress included a provision to create a Medicare hospice benefit in the Tax Equity and Fiscal Responsibility Act.

With hospice services covered by Medicare, what started as a purely charitable movement became a probable source of revenue. As a result, the number of for-profit agencies entering into the business of hospice has grown exponentially, with

alarming results. An article published by the Washington Post on May 3, 2014 entitled “Terminal neglect: How some hospices treat dying patients” reported that the quality of care provided by 920x1240hospices varies widely. A Washington Post investigation analyzed Medicare billing records for over 2,500 hospices, obtained an internal Medicare tally of nursing care in patients near death and reviewed complaint records at hundreds of hospices. At many hospices, they discovered that little care was provided for patients most in need. The investigation ascribed this absence of care to skimping on nurses, and to the failure of these hospices to have access to a facility where continuous crisis care could be provided. The investigation found that about 18 percent of U.S. hospices did not provide a single day of crisis care.

The investigation noted that the absence of crisis care at those hospices stands in stark contrast to most others, where such care is common. Medicare payment rates and their unintended financial incentives may be responsible. Providing routine care such as semiweekly nursing visits can be very lucrative. However, symptom management that requires continuous nursing care or inpatient care can be financially draining and logistically problematic, especially for smaller agencies.

An area of great concern is the burgeoning growth of home health care businesses that offer hospice. “For-profit home care agencies are bleeding Medicare; they raise costs by $3.3 billion each year and lower the quality of care for frail seniors,” said Dr. Steffie Woolhandler, professor of public health at CUNY’s Hunter College, lecturer at Harvard Medical School. “Letting for-profit companies into Medicare was a huge mistake that Congress needs to correct.”

William Cabin, assistant professor of social work at Temple University and lead author of a nationwide study published in the August 2014 issue of the journal Health Affairs said, “While our study is the first to show that profit-making has trumped patient care in Medicare’s home health program, that’s no surprise. A large body of research on hospitals, nursing homes, dialysis facilities, and HMOs has shown that for-profits deliver inferior care at inflated prices.”

Researchers believe that most hospices are providing quality care and many nurses in the field consider palliative medicine as much a calling as a job. When the hospice movement took root in the United States, hospice practitioners were typically part of religious groups, or were community-supported like the Texas Medical Center’s Houston Hospice. However, since for-profit businesses have come to dominate the industry, early planning and investigation of hospice care options is a necessity.

Karla Goolsby

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Celebrating Valentine’s Day as a Caretaker

Valentine’s Day is a holiday that people love to love or love to hate. Some people love the idea of having a whole day to celebrate their love for their friends, family, and that special someone. Other people believe Valentine’s Day is a made up holiday to generate card, chocolate and flower sales. Whatever your opinion is, as a caretaker acknowledging Valentine’s Day can benefit your loved one.

If you take away all of the commercialization of Valentine’s Day what is left? The answer is simple- love. Dedicating a whole day of love for the people in your life is a great way to realize how valuable they are. As a caretaker, you are already a laborer of love. Balancing work and family is stressful enough. You choose to become a primary caretaker because of your deep love for your family member or friend.

This Valentine’s Day, take some time to think about the love you have for the friend or family member you are taking care of. In the chaos of trying to create a successful balancing act, it’s easy to forget why you are a caretaker. Think about great memories shared between the two of you and talk about them with your sick loved one. You don’t have to buy flowers, chocolates, or cards to celebrate your love for each other.

Also, don’t forget to celebrate the love you have for yourself. Take a moment to think about your characteristics that make you unique and special. When you love yourself you can love others even more. Don’t let yourself forget your worth or that you are a strong, caring person. Give yourself a giant hug and compliment.

Even though Valentine’s Day can seem a little over the top and excessive, don’t forget the message of love. Let others in your life know that you love them even if it’s a simple phone call or letter. And celebrate the love you have for yourself.

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What Is Hospice Care?

Houston Hospice Staff

Houston Hospice Staff

When a patient with a severe illness decides that curative measures are no longer appropriate or effective, the option of hospice care is a compassionate, dignified and cost-effective end-of-life care option. When possible, the patient can receive treatment within his or her own home. The hospice team who visits the patient on a regular basis consists of a nurse, hospice aide, social worker, volunteer and chaplain. Staff physicians are consulted and are available when necessary.

 

The essence of Houston Hospice care is:

Following assessments in the areas of physical pain, emotional needs, spiritual issues, legal concerns and practical arrangements, the patient, family and physician approve a plan of care. Being involved in making the plan helps patients and families face the last stages of life more comfortably and confidently.

Patient care is provided by Houston Hospice in the home, in a nursing home or residential facility or in the Margaret Cullen Marshall Hospice Care Center which is located in the Texas Medical Center.

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When is Hospice an Appropriate Alternative?

Hospice care becomes an alternative when a patient has reached the last phases of a terminal illness and has been given a prognosis of six months or less.  The subject can be addressed at any time during the illness as physician and patient discuss treatment options.  When a patient chooses hospice, the decision to give up curative measures is made in favor of comfort care, focusing on pain management and symptom control, psychosocial support for both patient and family and ancillary services that lessen the burden of illness and care giving.

Please contact us or visit our web site  http://www.houstonhospice.org for more information.

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