Posts Tagged ‘hospice

Shedding New Light On Hospice Care: No Need To Wait For The ‘Brink Of Death’

Nurse checking a patient's blood pressure

The Biggest Misperception

A few weeks ago, Kathy Brandt’s 86-year-old mother was hospitalized in Florida after a fall. After rushing to her side, Brandt asked for a consult with a palliative care nurse.

“I wanted someone to make sure my mother was on the right medications,” Brandt said.

For all her expertise — Brandt advises end-of-life organizations across the country — she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.

“I was like — really?” Brandt remembered saying, struggling with shock.

It’s a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.

“The biggest misperception about hospice is that it’s ‘brink-of-death care,’” said Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.

In fact, hospice care often makes a considerable difference for those with months to live. “When someone is further out from death, we can really focus on enhancing their quality of life,” said Rachel Behrendt, senior vice president of Hospice of the Valley, which serves the Phoenix metropolitan area.

New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies.

What should seniors and their families, the largest users of hospice care, expect? It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:

Four Levels Of Care

Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that can’t be handled in any other setting.

With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.

Some hospices have their own general inpatient facilities and “it’s a common misconception that patients are sent to inpatient hospice to die,” said Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility, Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in inpatient hospice and sending them back home.”

Intermittent Care At Home

Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the latest report from the National Hospice and Palliative Care Organization.

While services vary depending on a patient’s needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.

Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient’s death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.

What families and patients often don’t realize: Hospice staff will not be in the home every day, around the clock. “Many people think that hospice will be there all the time, but it doesn’t work that way,” Brandt said. “The family is still the front line for providing day-to-day care.”

In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation with a hospice. “We get many self-referrals, as well as referrals from family and friends,” said Behrendt of Hospice of the Valley. Usually, a nurse will go out and do a preliminary assessment to determine if a person would qualify for hospice services.

To be admitted, two physicians — the patient’s primary care physician and the hospice physician — need to certify that the person’s life expectancy is six months or less, based on the anticipated trajectory of the patient’s underlying illness. And recertification will be required at regular intervals.

You Choose Your Physician

You have a right to keep your primary care physician or you can choose to have a hospice physician be in charge of your medical care.

At JourneyCare, the largest hospice in Illinois, “we prefer that the patient keeps their primary care physician because that physician knows them best,” said Dr. Mark Grzeskowiak, vice president of medical services.

These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient’s primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.

Concerns About Medications

“There’s a misconception that you’re going to be medicated to a highly sedated state in hospice,” said Dr. Christopher Kerr, chief executive officer and chief medical officer for Hospice Buffalo Inc. in upstate New York. “The reality is our primary goal is to increase quality wakefulness. Managing these medications is an art and we’re good at it.”

Family caregivers are on the front line since they’re responsible for administering pain medications such as morphine. “Absolutely, there’s a great deal of fear and anxiety around all the issues associated with giving medications,” said Cohn of Montgomery Hospice. “We try to reassure caregivers that the doses we start with are very small and we’ll see how the patient reacts and go slowly and deliberately from there.”

Because most hospice stays are short — the median length is only 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time, said Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients end up living longer than doctors anticipated.

If physicians can document continued decline in these patients — for instance, worsening pain or a noticeable advance in their underlying illness — they might be able to recertify them for ongoing hospice care. But if the patient is considered stable, they’ll be discharged, various experts said.

In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to a report from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. Expedited appeals of discharge decisions can be lodged with a Medicare quality improvement organization.

There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal help.

At The Very End

Almost 1 in 8 hospice patients don’t get visits from professional staff during their last two days of life, according to a study published in JAMA Internal Medicine last year. And this can leave families without needed support.

Some hospices have responded by creating programs specifically for people who have a very short time left to live. “We’ve put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,” said Ann Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.”

“One-third of our patients are here for less than seven days and often we get them in a crisis,” said Kerr of Hospice Buffalo. “We’ve had to repurpose our services to address the urgency and complexity of these patients’ needs and that means we have to be ever more present.” Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.

for Kaiser Health News

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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Five Ways Hospice Can Help

The vast majority of Americans say what they want at the end of life is to die in their own homes, as comfortable and pain-free as possible. The hospice philosophy is about making sure that a Patients prefer to stay at home. Grandfather and child.

patient’s experience reflects their wishes. Here are five ways that hospice helps to deliver this:

Hospice gives you comfort

Hospice professionals are experts at managing life-limiting illness. The hospice team ensures that medication, therapies and treatments all support a care plan that is centered on the patient’s goals. And hospice services can be offered wherever the patient calls home, allowing friends and family to visit freely—something they might not be able to do in a hospital ICU setting.

Hospice gives you peace

Beyond physical relief, hospice strives to help patients and families find emotional and spiritual comfort during what is often a very traumatic time. Hospice organizations are able to provide families with counselors, therapists, spiritual care advisors and bereavement professionals who can best support their struggles with death and grieving. These services are part of the hospice benefit, covered by Medicare, Medicaid or most private insurances.

Hospice gives you something extra

Hospice is not only about compassionate medical care and control of pain. Art and music therapists inspire joy; pet therapy and massages are offered at many programs as well.

Hospice gives caregivers guidance

Most families are not prepared to face the death of a loved one. In addition to caring for patients, hospice also offers services for families and loved ones that provide emotional support and advice to help family members become confident caregivers and adjust to the future with grief support for up to a year.

Hospice gives you more

Be it more joy, more love, or more quality of life in general, the goal of hospice is to offer patients the ability to enjoy the time they have remaining, and create meaningful memories for their families. Hospice offers more moments of life.

Learn more at www.MomentsofLife.org

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The 50th Anniversary of the Hospice Movement

This year marks the 50th anniversary of the hospice movement. It’s been an incredible success story. The Hospice Movement, including advances in palliative care and the introduction of holistic support, has been generally credited by the rise of two influential 20th century figures: (Dame) Dr. Cicely Saunders and Dr. Elisabeth Kübler-Ross.

An Unmet Need Recognized

Dame Cicely Saunders

Dame Cicely Saunders

Englishwoman Cicely Saunders was a medical social worker in 1948 when she developed a relationship with a dying Polish refugee that helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns, as well as palliative (pain and symptom management) comfort for their physical condition. Saunders began volunteering at a facility for the terminally ill poor, where a  physician convinced her that she could best influence the treatment of the terminally ill as a physician herself. Upon graduation from medical school in 1957, she accepted a permanent position in a hospice facility in East London, where she continued to research pain control.

Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit to Yale University. Her lecture, given to medical students, nurses, social workers and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.

St. Christopher's Hospice

St. Christopher’s Hospice

In 1967, Saunders established St. Christopher’s Hospice, the world’s first purpose-built hospice, in a London suburb. It was founded on the principles of combining teaching and clinical research and providing expert pain and symptom relief with holistic care to meet the physical, social, psychological and spiritual needs of its patients and those of their family and friends. Familiar comforts of home were made available to patients, from gardening to salon hairstyling. As Saunders’ protégé Dr. Richard Lamerton later explained, a patient’s home or a home-like setting was found to be essential as a part of therapy, versus a hospital – the last place to be when one needed peace and calm.

A Plea for Empowerment and Dignity

Elisabeth Kubler-Ross

Elisabeth Kubler-Ross

In Chicago, Swiss-born psychiatrist Elisabeth Kübler-Ross was formulating her own response to the treatment of terminally ill patients in late-1960s America. Married to an American physician, she observed what she considered inadequate social responses by his hospital toward its dying patients. She began a study that would lead to more than 500 interviews with terminally ill patients.

On Death and Dying was published in 1969 and became a bestseller. A revolutionarily insightful work, it identified five stages through which many terminally ill patients progress. These stages (denial, anger, bargaining, depression and acceptance) would become widely accepted in the decades that followed as ‘the five stages of grief’. Even into the 21st century, On Death and Dying would continue to be the gold standard for education on the subject. The book was more than a simple explanation of psychological expressions, however. Within it, Kübler-Ross made a plea for care in the patient’s home as opposed to treatment in an institutional setting. She further argued that patients should have a choice and the ability to participate in the decisions that affect their destiny, including patients’ rights to refuse treatment that they felt would not be beneficial or would not improve their quality of life.

Testimony Leads to Federal Support

In 1972, the United States Senate Special Committee on Aging conducted the first national hearings on the subject of death with dignity. Kübler-Ross was asked to testify. In her testimony, she capitalized on the opportunity to emphasize the benefits of patient care in the patient’s own home: “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving families and patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”

The impacts of Saunders and Kübler-Ross redefined hospice care across the globe: comprehensive care for the patient’s physical, social, psychological and spiritual needs; patient empowerment to make decisions about the type of care they wish to receive or not receive; emphasis on at-home care for best patient comfort when possible; and an expanded circle of care to include the patient’s family and friends.

In 1978, a report by 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.”

The Hospice Movement Comes to Houston

In 1980, Houston’s first hospice, Houston Hospice, was founded. The same year, New Age Hospice was formed, which later merged with  Houston Hospice. New Age Hospice’s primary organizer, Marion Wilson, was determined to establish a source of humane, caring responses for dying patients and their families, following the loss of three of her children.

In 1981 Houston Hospice (as New Age Hospice) began accepting patients. Its first Medical Director was Dr. Richard Lamerton, a revered

authority on care of the terminally ill who had been the first intern trained by Dame Cicely Saunders at St. Christopher’s Hospice in London.

A 1985 visit by Princess Diana to St. Joseph’s Hospice. One of its founders, Dr. Richard Lamerton, became the first Medical Director of Houston Hospice.

—Karla Goolsby, Houston Hospice Communications Specialist

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Veterans’ Day: A Reminder that Heroes Walk Among Us

frank_hay

Frank Hay

The 68-year-old courier has tried to put his memories of the unpopular war in Southeast Asia behind him. He certainly doesn’t think of himself as a hero. Nevertheless, while Frank Hay was making his rounds at Houston Hospice recently, his Vietnam Veteran ball cap was spotted by a staff member who thanked him for his service. He nodded his thanks and thought he’d be on his way until the staff member invited him to talk about the war. Houston Hospice is part of The National Hospice and Palliative Care Organization’s “We Honor Veterans” program. As a result of learning more about the needs of veterans and their families, staff members have a tendency to notice vets.

An 18-Year-Old in America

In 1966, 18-year-old Frank Hay and his family lived a quiet country life on the banks of a lake outside North Guilford, Connecticut. North Guilford is a pleasant town with a volunteer firehouse, a general store and a gas station. As a kid, Frank got a kick out of walking on the lake’s barely submerged island to the astonishment of visitors who thought he was walking on water. With a school career frustrated by dyslexia behind him, Frank went to work as a Railway Postal Clerk. He counted bags of mail that were loaded and unloaded from rail cars as part of the Railway Post Office (RPO). Frank’s family knew young men were being conscripted to assist with a conflict in a place called Vietnam, so they weren’t surprised when he was drafted.

Frank was sent to Fort Gordon, Georgia for pre-induction physical examinations and testing. His dyslexia caused the army to suspect he was faking to get out of service. However, additional testing revealed a high IQ and the kid who grew up deer hunting in the woods of Connecticut was trained to be a gunner on a helicopter. During basic training Frank recalls thinking the war was a game. “I thought we’d come in and say ‘John Wayne’s here. Step aside.’ The first time someone got shot, I thought, ‘Wow! This is real.”’

Confusing New World

military-1348281_640

Frank’s first impressions of Vietnam were clouded by confusion. “We’re in our own world in the U.S. and when you go there you realize things are not the same.” He felt disoriented to be in a place where people were so impoverished that they were forced to sell a child rather than part with a cow. Frank had been in Vietnam only seven months when his helicopter was hit by enemy fire and crashed killing the pilot and co-pilot. He was captured immediately by the enemy who took him into the jungle where they were holding other prisoners of war. There were no POW camps at that time so the enemy cut the sole of Frank’s foot to prevent him from escaping.

Prisoner of War

He remembers being moved constantly for 14 months. “I talked with other prisoners but I didn’t become close because a lot of them died. Some of them went loony.” Fellow POWs died of disease and starvation. Frank figures he lost about 50 pounds. “We’d stay in a hole dug in the ground with bars over it. They fed us rice and fish. I’ll never eat rice again.” During the constant moves, the prisoners were separated and brought back together. Whenever Frank’s foot began to heal, it was cut again. “I took my anger out on God. I’d say ‘Why did you let this happen?’ ‘Why don’t you do something?’ I couldn’t be mad at the enemy. They were soldiers too.”

One day while the prisoners were out of their holes for a move, their encampment came under fire from a U.S. Army helicopter. Everyone ran. Guards ran. Prisovietnam_1967ners ran — in all directions. Frank ended up half running and half hobbling with two other prisoners. “We just kept running until we ran into a U. S. Army unit.” He was taken to a field hospital where he was treated and debriefed. From there, Frank went to a VA hospital. After his injuries healed he was sent home.

People Asked Why I Was There

Frank didn’t stay in touch with any of the guys he met in Vietnam. He didn’t keep a uniform, or a photo or any memento of his service. “After the war, people asked why I was there and why I was fighting and killing. We were just soldiers on both sides. We were only doing what we were told. I just wanted to get on with my life.” Frank recalls being spit on and called a baby killer. He went to the VFW Hall in Guilford, Connecticut where he was ridiculed. “The other vets said that Vietnam was not really a war.” Frank resents being denied camaraderie at the hall. “In those days they had dances, parties and baseball games. Now it’s just a place to go drinking. I’m tired of older people coming up and shaking my hand. Where were you when I came home?”

Frank doesn’t like to talk about the war. But in an act of extreme generosity, he did. He did move on. He moved to Houston and, at 50, met and married his wife who hails from Buffalo, New York. Frank has no desire to return to Vietnam. The courier has moved on but some wounds remain.

We Honor Veterans

About Houston Hospice: As a leader in hospice care for people of all ages and all walks of life, nonprofit Houston Hospice provides for the distinct needs of Veterans and their families through its We Honor Veterans Program. Care is provided to patients and families in private homes and in residential facilities throughout Houston and 10 surrounding counties. Inpatient care is provided in the Houston Hospice Margaret Cullen Marshall Hospice Care Center in the Texas Medical Center. To learn more about the We Honor Veterans Program and other services, call 713-468-2441 or visit www.houstonhospice.org.

—Karla Goolsby, Houston Hospice Communication Specialist

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Taking a Lesson from Muhammad Ali

muhammad-ali-punch_2856798k

The Champ Did it Right

I’m one of those adults who doesn’t have an up-to-date will or a signed Medical Power of Attorney. I know better, and now, I’m going to take a lesson from the Champ, Muhammad Ali. His funeral was ten years in the making. An Ali family spokesperson said the boxing legend, acclaimed civil rights icon, and humanitarian personally planned the details of his funeral over a ten-year period. Because I work at a hospice and my husband is a pastor, I’m frequently in the know about the end-of-life wishes of elder friends. Here’s the thing though, this task is not just for the elderly.

Ask Questions

Ask Yourself Basic Questions

While it may feel scary or overwhelming to think about our own deaths, asking yourself basic questions about how and where you’d want to die is a critical first step. Would you prefer to be at home? Do you envision attempts to keep you from dying with resuscitation and life support measures or do you prefer a natural death? These are not easy conversations to have with our loved ones. But they are necessary ones if we want to leave this world on our own terms and ease the burden loved ones will face when it’s our time to go.

According the National Hospice and Palliative Care Organization, the very people we expect to help guide us through these conversations are not well prepared. A recent national poll found that while almost all doctors think having end-of-life conversations with their patients are important, nearly half said they frequently or sometimes feel unsure of what to say and less than one-third reported having had any formal training specifically on talking with patients and their families about end-of-life care. Because our medical culture default is set up first to keep people alive at all costs. Conversations about how to die can be seen as going in opposition to that cultural norm.

Legal surrogate

So, What to do?

Identify a legal surrogate decision maker. This person is someone you trust to follow your wishes if ever you are unable to communicate. Any adult can serve as your surrogate regardless of whether they are related to you or not.

Additionally, complete a living will or advance directive. This shouldn’t replace conversations with loved ones or your legal surrogate. However, completing these will express your values and wishes around life support and serve as a guide for loved ones and your healthcare providers. Houston Hospice provides complimentary packets filled with hard copies of information about how to start this important conversation along with Texas Medical Power of Attorney and Texas Directive to Physicians and Family or Surrogates forms. (Email kgoolsby@houstonhospice.org or call 713-677-7118 to request a packet.)

Medical Power of Attorney

Knowledge is Power

Next, familiarize yourself with palliative and hospice care. Palliative medical care focuses on helping seriously ill patients and their families and provides and extra layer of support to address symptoms and the stress of being ill during any phase of treatment.

Hospice utilizes palliative care, plus it adds additional end-of-life medical, social, emotional and spiritual support for patients who have been diagnosed with a life-limiting illness and their families. Hospice care can be provided at home, in an assisted living community, or in an inpatient care setting. Most people do not want to die in a hospital. However, when ill, all roads lead to hospitalization and once in the hospital, many barriers can prevent a transition home. It’s important that loved ones and healthcare providers know your preference in advance.

Most of us won’t need to spend 10 years planning as Ali did. But we need to think carefully about our values and wishes and, most importantly, we need to share our wishes with loved ones.

—Karla Goolsby, Houston Hospice Communication Specialist

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Houston Hospice Volunteer of the Year

WP_20150514_11_58_32_Pro_peIt Wouldn’t Be Monday Without Debbie

Eleven-year volunteer, Debbie Hoelscher, has been named volunteer of the year by Houston Hospice. As a nonprofit organization, Houston Hospice relies upon over 300 volunteers to help set the tone for the compassionate care patients and families receive. Since 2003, Debbie Hoelscher has volunteered in both the inpatient care center and in patients’ homes. Volunteer Coordinator, Patsy Piner said, “It wouldn’t be Monday at hospice without Debbie here tending the flowers, tending the patients, and bringing serenity and calmness into our lives.”

Volunteering With Hospice Isn’t For Everyone

About her work in hospice Debbie states, “The families truly appreciate the smallest gift of your time and doing this type of work gives me a great sense of gratefulness.” Debbie also trains incoming volunteers and many have noted her ability to engage and be at ease with patients and their families. Ms. Piner added, “We often say that volunteering with hospice is not for everyone, but Debbie has a gift for this type of work and we are glad she spends her Mondays with us.”

Volunteers are an integral part of nonprofit Houston Hospice’s team; serving patients and families with caring expertise in the Houston Hospice care center, in patients’ homes and in assisted living facilities. To learn more about volunteering at Houston Hospice, call 713-467 7423 or visit www.houstonhospice.org.

-Karla Goolsby, Houston Hospice Communication Specialist

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Pat Matthes: A Heart for Hospice

After a long career dedicated to helping others, Bay City native, Pat Matthes, is retiring at the end of May. Pat has served as a Social Worker for Houston Hospice for thirteen years.

Pat Matthes

Pat Matthes

During that time, he regularly traveled throughout a 50-mile radius of his El Campo office; helping patients and families during their times of greatest need.

Pat’s career as a Social Worker began in 1976. During an almost 40-year career he worked in private practice, helped special needs patients in Bay City, and tried his hand at Hospital Administration before filling a rewarding niche as a Social Worker for Houston Hospice. “I love my job very much,” said Pat. “I love the team. I love the people at Houston Hospice. They’re a class act.” When asked what he’ll miss most Pat answered, “I’m going to miss hearing people’s stories. There are always beautiful stories in hospice.”

Pat’s colleagues anticipate that his absence will be strongly felt. Houston Hospice Professional Relations Liaison, Tiffany Livanec said, “If there was a national ‘Heart of Hospice’ award, Pat would certainly be the recipient. I’ve rarely met anyone who didn’t know him, and I’ve never met anyone who didn’t sing his praises. He will definitely be greatly missed.”

Volunteer Coordinator, Gloria Garza said of Pat, “We have been together for so many years with Houston Hospice – El Campo. He is an amazing, compassionate and kind soul. I am greatly going to miss my friend!”

Pat’s not exactly sure what he’ll do in retirement, but he knows it will involve helping people. He plans to volunteer for First Baptist Church of Bay City where he’s a member. Pat said he likes building things and looks forward to helping the Baptist Men’s Association, a group that provides assistance in the aftermath of disaster. He said he might consider volunteering with hospitals and hospice too.

Houston Hospice is Houston’s only nonprofit hospice, providing care for patients and families throughout ten counties. To learn more about Pat’s retirement celebration or the local services offered by Houston Hospice, visit www.houstonhospice.org, or call 979-578-0314 or 800-420-6193.

-Karla Goolsby, Houston Hospice Communication Specialist

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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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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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