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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I Remember Tommy: Coffee, Cigarettes, Harley Davidson and Hospice

Patsy Piner

Patsy Piner

I remember the first time I saw Tommy. He came for a tour of the Hospice with his aunts. He sat on the couch in the first floor family room where he nodded off several times while I answered the many questions his aunts asked. When we walked down the hall of the first floor, Tommy made comments and had questions too, “Don’t put me in no pink girly room. Do you have an orange and black room? Those are Harley Davidson colors. Manly colors – loved and revered by bikers.” Tommy was a biker, had a Harley and loved to talk about it. He had plans to ride again – just as soon as he felt better. He was here to get his medicines regulated so he could get on with his life. This hospice stuff was an inconvenience he was dealing with begrudgingly.

Tommy was young, in his early forties, and had pretty much lived life on his own terms until brain cancer stopped him in his tracks. He had dealt with the treatments and surgeries the best he knew how, with blend of humor, reality, anger and denial. A kind of cocktail that he partook of each day just to keep going. Little doses of each when needed so he could hear what he had to hear, see what he needed to see and do what must be done.  After his initial visit, Tommy was in the inpatient care center several times and we always knew when he was here. He had been a large man with an outgoing personality before cancer and treatments had taken their toll; his body had changed but his personality remained intact. He made his presence known.

Tommy was blessed by his loving family who took turns caring for him at home and being with him while he was here. The few times he was alone here, he had the volunteers and/or the staff jumping. We all knew Tommy. Ask anyone who met him while he was here what his two favorite things were and I am sure the response will be, “Coffee and cigarettes.” Tommy loved good coffee, particularly Blue Mountain from Central Market and his smokes. I could see Tommy from my desk, sitting outside drinking coffee, smoking, and visiting with his friends, old and new. A few times he managed to sneak out alone. He would sit on the bench, smoke a little and doze a little. On those occasions, I would walk over, gently wake him up, sit and chat for a moment so he could finish his cigarette safely. We would amble back to his room and he usually had me making fresh coffee before I went back to work. Old coffee was a no-no according to Tommy, so the Volunteer department bought a little coffee machine that made just enough to fill a travel cup. That was Tommy’s pot, Tommy’s cup and Tommy’s coffee.

When the last days of Tommy’s life were approaching, his family brought him back here for the end. I saw very little of Tommy that last time; he wasn’t going outside for a smoke and his coffee dispenser was idle. He was in his room on the 2nd floor quietly preparing to die. His mother held his hand and sang “Hush little baby, don’t you cry.” She wanted to be as close to him as she could get, so a nurse found a small plain wooden stool for her. She pulled it close to his bed and stayed there holding his hand and singing for hours. When the time came for Tommy to take his final breath, he did so while being cradled in his mother’s arms – one last time. After Tommy was gone, his mother wanted to do something meaningful in his memory. A simple wooden stool had made such a difference in her last hours with her son that she and her family and friends acted on a suggestion made by the nurse who was with Tommy when he died — every room should have a stool. Now, we have stools in every room and they are there because of Tommy, and his mom, and his family and his friends. Even though they are small plain wooden stools, there is nothing little or ordinary about what they will be used for. We will think of Tommy and his mom each time we see someone sitting on a plain wooden stool close to a bed, saying goodbye. —Patsy Piner is the Houston Hospice Volunteer Coordinator 

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Experiencing The Other Side Of Hospice Care: A Hospice Nurse And Her NFL Husband

I graduated from nursing school relatively late in life, at age 42, with the intention of working for Houston Hospice. My father had been on service in 2010 and, like so many with whom I work; I was inspired by this painful, albeit beautiful experience, and felt called to be a hospice nurse. I volunteered for Houston Hospice prior to graduation, hoping to become familiar with hospice services. After working a year on med surge at our local hospital, I was able to get on the Houston Hospice El Campo Team as an Admissions Nurse.

At this point, I must disclose that three months after graduating from nursing school, in September 2012, my dear husband and best friend, Bryan, was diagnosed with Hodgkin’s Lymphoma.

Bryan is phenomenal — a professional football player in the NFL, rancher and surfer; this man embodies strength. The morning before his diagnosis at the ER, he mowed the yard with a collapsed lung! Bryan fought through chemo for six months and when told that his cancer was unresponsive to treatment, he continued fighting on his own terms; holistically and spiritually. When I was hired by Lisa Machen, RN, PCM in July of 2013, she was well aware of Bryan’s condition, however she knew that my heart was in hospice and she believed, rightly so, that when his disease progression began causing issues, she and the El Campo Team would be here for Bryan and me both. In December of 2013, Bryan’s cancer was progressing to the point that hospice care was needed and both Dr. Barker and Lisa Machen came to our home to assess and admit him onto service.

It is difficult to describe the blurred lines that can occur in these kinds of situations. Bryan’s Case Manager, Jackie Hooper, RN, is my friend, my mentor, my co-worker, and….my husband’s hospice nurse. Bryan is her patient but he is my life. I am able to be a calm patient advocate for all of our patients — but not for my husband. The phone calls, the hugs, the voice of reason given by Jackie through this process thus far are beyond words. In addition to feeling like I’ve been emotional for our team, Bryan is what we would all describe as a “difficult patient”! He may sleep 18 hours a day and then get up and decide to chop down a tree… or disappear to go fishing for hours without his phone. Trying to keep him safe and manage his symptoms, while encouraging his autonomy has been an arduous effort. Jackie has been wonderful at developing a rapport with him, educating Bryan and supporting his efforts to ‘be a man’ to his fullest. As a case manager, Jackie is a wonderful example of patient advocacy. She is proactive and yet equanimous at her core.

And then there is me, with a husband who’s a patient on hospice, still learning and finding my footing in my chosen field. Jackie, Lisa, and the rest of our team, have exemplified patience and support for me. Sharing hugs, a kind ear, and special notes and cards, they have managed to help me feel grounded and protected throughout this painful process. Pat Matthes, not a nurse but a wonderful social worker, has been such a pillar of support and reassurance. Victoria and Karen in our office, have been blessings as well, always available to share a hug or laugh with me. And then there’s Dr. Barker, what a true angel.

Knowing the ‘end result’ of Bryan’s illness does not lessen the journey that we are on. I truly cannot fathom walking this road without the Houston Hospice El Campo Team. The gratitude and love I feel for Jackie and Lisa, and the whole team is humbling and inspiring. These nurses are walking beside me, pulling ahead, and pushing behind when needed. I am inspired by them professionally and personally, and I am so very grateful.

Krista Caldwell, RN, Admission Nurse Houston Hospice El Campo

Krista and Bryan

Krista and Bryan

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Houston Hospice Nurses: Every Word, Every Action A Gift

I was surprised that within my first two months of working at Houston Hospice, a childhood friend contacted me to say that her grandmother was being admitted to our inpatient unit. She was 96 and very much beloved from a long life. After emergency brain surgery to remove a blood clot, she continued to have tiny, persistent strokes. Days of monitoring, setbacks, bad news, and countless decisions left the family’s nerves frayed. Then, they made the difficult decision to stop trying to save their loved one.

“Mimi” was admitted after business hours on a Tuesday. When I arrived at the room, the family was just getting settled, and we all started crying. Fortunately, I soon realized that the tears were more of relief and assurance than of sadness. The family told me that even though they had only been at Houston Hospice for a few minutes, they were already feeling at peace. Mimi seemed to be sleeping deeply and in the greatest comfort.

While I was there, the nurses and aides were remarkably gentle, professional, and accommodating. My friend and her mother were overwhelmed with the calm that these women transferred to them. Every action or word was a gift. I’ve heard great things about our inpatient unit staff, and I have been with my own mother for weeks in ICU and other recovery areas of a hospital setting to witness outstanding, attentive care — but our Houston Hospice nurses and aides take care to a whole new level. Their skill sets include wisdom and patience that I have never observed before. I cannot believe how proactive they are with questions and suggestions to anticipate patient and family needs.  A lot of wonderful people can be responsive, but when support persons are proactive in offering help, the effect is incredible.

My friend, her family, and I were amazed by Sarah, Darlene, Sophia, Ellen, and Kristin on the night shift – and all of the devoted nurses and aides at Houston Hospice.  THANK YOU for truly caring and for giving every patient and family the gentle help they so desperately need. You are shining examples for all of us.

Martha Cambell, Houston Hospice Community Outreach Coordinator

holding hands

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Houston Hospice Nurses: Life Matters And This Is What It’s All About

As I walk the halls of Houston Hospice’s inpatient unit, whispers can be heard coming from multiple patient rooms. Peering into one room, a nurse is seen comforting an elderly man wondering what life might be like when his wife of 54 years will no longer be at his side. Across the hall, a nurse listens as a teenage boy asks her what heaven might be like when he gets there; nervous that he won’t know anyone when he gets there. Continuing down the hall, I see into the room on the left, a nurse is teaching a man’s sister how to administer his medications in preparation for him to go home; something he has been longing for since the day he found out he was ill. In the room up ahead to the right a nurse works diligently at the bedside of her newly-admitted 31 year old patient to get the pain caused by her breast cancer managed as the patient’s parents stand watching with tears streaming down their faces. I continue walking the hall, and I feel an overwhelming sense of pride for my wonderful team of nurses.

Here at Houston Hospice, the inpatient unit nurses provide a full-spectrum of physical, emotional, psychosocial, and spiritual care with the goal of preventing suffering and relieving symptoms to support the best possible quality of care for our patients and their families. As we enter National Nurses Week 2014, I would like to recognize and sincerely thank each and every Houston Hospice inpatient unit nurse as they are leaders in providing uncompromising and compassionate end-of-life care to our patients and families.

“And what nursing has to do … is to put the patient in the best condition for nature to act upon him.” – Florence Nightingale, Notes on Nursing: What it is and what it is not.

Thank you, nurses, for all you do,

Jessica Rousseaux
Inpatient Unit Patient Care Managerholding hands

 

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The Joy of Living as Shared by a Hospice Patient

 

April 10, 2012—Another Hospice volunteer and I sit at the bedside of an animated, talkative 97-year-old African American woman whom I’ll call “Louise.” Her thin face is haloed with a white cotton turban, and her eyes sparkle with good humor. She tells us that she fell in her home and broke a hip, the first broken bone in her long life and her first time having to go to a hospital. She was able to reach the phone to call for help, and she waited quietly lying on the floor until her sister arrived.

 

While the doctors were examining her, they found that Louise had metastasized cancer. Today she reminisces about picking cotton and corn as a child on her family’s riverside farm in the small town of Edna, Texas. Louise never married, but after finishing elementary school, she worked as a housekeeper for a couple who moved north to Chicago. When the husband died, she followed the ailing wife to a retirement community in Florida and cared for her until her death. Nineteen years ago, Louise moved back to Texas to be near her extended family. She lists the names of her siblings and nieces and nephews, and gives us their birth dates. When I asked the date of her own birthday, she boasts, “I’ll turn 98 on April 21.” She says, “People tell me that I have lots of stories to tell.” Joan and I assure her that she surely does. Louise still has a group of friends whom she wants to notify about where she is. Some are in nursing homes, and they still manage to stay in touch.

 

April 17, 2012—Louise is delighted to see me again and asks me to switch off the TV that the nurses have left on for her entertainment. She’d much rather chat and regale me with the same stories she told me the week before.  She is excited about her upcoming 98th birthday party on April 21 and tells me she always hoped she’d live to be 100. When the preacher from her neighborhood Baptist church arrives to pray with her, she treats him with deep respect. I leave them to their prayers and encounter Anne, the social worker in the hallway. She says that Louise is too healthy to stay at the inpatient unit of Hospice, and that paperwork is in motion to have her transferred to another facility.

 

April 24, 2012—I notice a bunch of shiny balloons still inflated on the ceiling in one corner of the room. Louise tells me about her cousins, nieces, nephews and step-sister escorting her in a wheel chair to celebrate her birthday in the courtyard with soup and ice cream and other soft foods “that I can eat with my dentures.” I hear all about the music and presents and laughter, and suddenly Louise is quiet. We both realize that the party’s over and that unless a miracle occurs it’s the last birthday she will celebrate.

 

I ask if she’d like me to read her some psalms. Louise responds, “Whatever you do for me, honey, I accept gratefully.” But before I reach for her Bible, she recites aloud by memory part of Psalm #23 and the entire Lord’s Prayer.  She confides, “I say those words every morning as soon as I’m awake and repeat them at bedtime, when I send prayers to any loved ones who are especially needy.” Louise reminisces about singing spirituals in her Baptist-Methodist farmland church. I sing Swing Low Sweet Chariot, Joshua Fought the Battle of Jericho and Amazing Grace with her, and she chimes in, with a grin on her emaciated face. Afterwards, Louise admits, “I can’t sing worth a darn, but if someone else is singing, I can’t help but join in. I don’t understand the words to modern songs, but those spirituals bring me right back to my childhood.” Just as I’m leaving the room, a hospice volunteer named Loretta visits with her 4-pound “therapy dog,” Gigi—small and gentle enough to cuddle up next to Louise, who claims to be frightened of big dogs.

 

May 1, 2012—I arrive with my guitar to accompany our spirituals, eager to see Louise, and I’m stunned by her transformation. She is asleep in her bed, without all the pillows that usually prop up her back. Her body looks tiny, and now that her mouth is free of dentures, her face is shrunken. She is breathing so lightly that her chest barely moves. I decide to sing quietly at her bedside. She makes no response, and I hope that the familiar melodies are reaching her on a subconscious level. I realize that once her 98th birthday party has come and gone, and everyone she loves has shown up to honor her, Louise is ready to let go of life. She is tired and doesn’t want to be transferred to a long-term care facility. Silently bidding her farewell, I slip out of the room. I know that it’s likely that this is my last view of her. Louise has given me the gift of her joie de vivre, and I feel grateful to her.

–Houston Hospice volunteer, Ginger Clarkson

Volunteerplayingguitarandsingingtopatient

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Lessons from a Butterfly Family: Parenting a Dying Child


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Thuy Hanh Trinh, MD Earns Fellow Status from the American Academy of Hospice and Palliative Medicine

Hanh Trinh Photo white background 11-2013

Thuy Hanh Thi Trinh, MD, MBA, FAAFP, WCC, of Houston, TX, recently earned the designation Fellow of the American Academy of Hospice and Palliative Medicine. The Academy is the professional organization for physicians who care for patients with serious illness.  Advancement to fellowship status within the academy honors dedication to and scholarship in the field of the hospice and palliative medicine. This distinction represents a minimum of 5 years of membership, participation in AAHPM activities, letters of recommendation, and board certification in hospice and palliative medicine.

 

Dr. Trinh is Associate Medical Director at Houston Hospice in Houston, Texas. She received her medical degree from Louisiana State University Health Science Center in New Orleans and trained in family medicine at Baylor College of Medicine.  Following residency, she completed her geriatric fellowship at Baylor College of Medicine and her palliative medicine fellowship at M.D. Anderson Cancer Center. She joined Houston Hospice in 2007 and serves as the Education Liaison.

She will receive the designation during the Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association in San Diego, California on Saturday, March 15, 2014.

The American Academy of Hospice and Palliative Medicine’s membership includes more than 4,900 physicians and other healthcare professional committed to improving the care of patients with serious or life-threatening conditions. Since 1988, AAHPM has supported hospice and palliative medicine through advancement of clinical practice standards, fostering research, providing education, and through public policy advocacy.

To learn more about Houston Hospice please visit www.houstonhospice.org.

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Expansion of the Margaret Cullen Marshall Hospice Care Center Becomes Reality

IMG_8196

Ribbon Cutting in Spring 2014

The expansion of the Margaret Cullen Marshall Hospice Care Center became a reality in 2013 with the build out of the third floor. The groundbreaking ceremony was held at the end of April and construction on the third floor began in May. Forney Construction, the primary contractor of the project, completed the job in October. Patients began occupying the third floor at the end of October. Thanks to the philanthropic community and the employee’s response to the capital campaign who made filling this need possible.

Renovations for the first and second floors are expected to be completed by Spring 2014. This completion along with the third floor build out will provide an additional
12 patient rooms at the Texas Medical Center facility. This allows Houston Hospice to be more effective in serving patients and families. 

To find out more about the Houston Hospice capital campaign please visit www.houstonhospice.org.

 

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Houston Hospice Capital Campaign Video: Dianne Gilbert, RN, PCM

 

Construction is well under way on the Houston Hospice Margaret Cullen Marshall Hospice Care Center, but we still need your support. Twelve patient rooms are being added to our third floor to allow us to provide inpatient hospice care for additional patients. In the clip above, Mark Howard, Houston Hospice Financial Development Committee Member, interviews Dianne Gilbert, RN, PCM about why she thinks the additional inpatient space is needed. Dianne interfaces with patients every day and knows firsthand the impact the additional rooms will make. Gilbert said, “At 3 in the morning when I get a phone call that there is someone at the end of their life or there is someone in great pain . . . we need to be able to bring those patients in so that we can help them control their pain or provide them comfort in their final days.” Gilbert sees between 40-60 patients weekly.

For additional information about the capital campaign please visit www.houstonhospice.org.

 

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