WINTER 2013

Myths about Hospice and Palliative CareHospice isn’t a place. And hospice care is not just about those who are dying. Hospice is a comprehensive kind of care that focuses on living. It’s about living as fully as possible, surrounded by family and friends, up until the end of life. Palliative care brings this special philosophy of care to people earlier in the course of a serious illness.

More than 1.5 million dying Americans are served by the nation’s hospice providers every year, reports the National Hospice and Palliative Care Organization. Yet there are many myths about hospice that keep people from getting this compassionate care when they need it most.

Myth: Hospice is where you go when there is nothing more a doctor can do. Reality: Hospice is a philosophy of care providing medical, emotional, and spiritual care focusing on comfort and quality of life.

Myth: Good care at the end of life is very expensive. Reality: Medicare beneficiaries pay little or nothing for hospice, and most insurance plans, HMOs and managed care plans include hospice coverage.

Myth: Hospice is only for the last few days of life. Reality: Hospice patients and families can receive care for six months or longer, depending upon the course of the illness.

Myth: Choosing hospice means giving up all medical treatment. Reality: Hospice places the patient and family at the center of the care-planning process and provides high-quality pain management and symptom control.

Myth: Everyone dies in a hospital. Reality: Hospice goes to the patient and family at home—whether that’s a private home, a nursing home or assisted living facility, or a hospice residence.

Myth: Hospice is only for cancer or AIDS patients. Reality: Fifty percent of hospice patients are diagnosed with conditions other than cancer or AIDS.

Myth: Families are not able to care for people with terminal illnesses. Reality: Hospice involves families and offers them professional support and training in caring for their loved ones.

Myth: Hospice is just for the elderly. Reality: Hospice serves anyone facing a life-limiting illness, regardless of age.

Myth: Hospice only focuses on the dying process. Reality: Hospice offers grief and bereavement services to family members and the community.

If this information about hospice surprises you, take the time to find out more. The best time to learn about hospice is before someone in your family is facing a health care crisis.

Myth vs. Reality

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Elizabeth Kübler-Ross was a pioneer in her field. She believed dying is a human process and not simply a series of biological events. As a result, she was one of the first to stress the need to humanize the care of dying patients with a holistic (“whole person”) approach. This included caring for the person’s emotional and spiritual needs in addition to the physical ones. Listening to the dying person’s story and needs became the model of holistic care within the hospice movement. The contributions of Kübler-Ross should not be under appreciated.

As helpful as the holistic theory was, however, there was a flaw. Kübler-Ross proposed that all dying people experience stages of reaction through the dying process. These stages include denial, anger, bargaining, depression, and finally acceptance. The flaw of the theory is that it dismisses diversity. Every illness is unique because every person is different. People should not be expected to function within some mechanical parameter as though they are androids.

In the fall newsletter, I discussed the danger of dismissing diversity. When the ill are reduced to physiology (everyone is pretty much the same), they become objects and their personhood is lost. Treatment may be care, but it is not necessarily care giving. In this article I would like to propose that care has no recipe.

Let’s discuss fear and diversity. I choose fear because some of the hospice patients I speak with naturally express fear. Some express fear of death. While they’re not afraid to die necessarily, they are afraid of how they will die. “What will the process of dying look like for me? Will I suffer? And what will happen to me when I die?” These are common questions. But even then people with the same fear experience it differently. Death is common

to all and yet all experience it in their own unique and personal way. These differences should never be dismissed because of some theory.

So how do we care for the dying? Sometimes it is helpful for the dying person (or ill or infirm) to know that others share their experiences. Fear, panic, confusion, depression, and anger, for example, are “normal” reactions upon hearing a diagnosis of a life ending disease. There is a fellowship of suffering. Knowing that others are afraid and panic, too, makes the person feel less peculiar. But the caregiver must know that the fear is uniquely their own and not just a stage. Saying, “My wife is afraid. She’s going through that fear stage just as expected,” dismisses her experience. Her experience just becomes “something everyone goes through.” Categorizing is easy and convenient. But it devastates her. Wouldn’t it be better to listen to her as she explores why she is afraid? The genuine caregiver is one who will listen and respond to her experiences. As one author says, “Caring has nothing to do with categories; it shows the person that her life is valued because it recognizes what makes her experience particular.” The caregiver’s challenge is to find ways to allow her to explore and express her needs.

Because we are human, we have the capacity to contemplate our own mortality. We all know that someday we will die. Elizabeth Kübler-Ross was right. The dying experience is a process. But you and I experience that process in our own unique way. The genuine caregiver recognizes this uniqueness. With a listening, witnessing, caring presence, the caregiver enters in knowing that care has no recipe.

CAREPastor Gregg TebeestHospice Chaplain

has no recipe

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Some of us deal with issues by turning inward, thinking about them, working things out in our minds. We look for quiet times and withdraw from others. Some of us find we figure things out best by talking about them. We seek out others with whom we can talk, but especially we seek out those who will really listen to us. Sometimes we just need to express our feelings about something. We want a kind, listening ear.

Did you ever have the experience of talking with someone and you realize the person is no longer looking at you but is looking over your shoulder past your ear at something else? Or perhaps the person you are talking to begins fiddling with a pen, glancing at the TV or talking to someone else without so much as an “excuse me”? Some people just do not pay attention well or become uncomfortable with what is being said.

Some folks listen then offer advice and try hard to “fix” our situation. That is frequently not what we want nor is it often very helpful. The following is from an unknown author taken from My Gift: Myself, a training guide for hospice volunteers by J. Nowack.

When I ask you to listen to me and you start giving advice,you have not done what I asked.When I ask you to listen to me and you begin to tell mewhy I shouldn’t feel that way, you are trampling on my feelings.When I ask you to listen to me and you feel you have to do something to solve my problem,you have failed me, strange as that may seem.Listen!All I asked was that you listen, not talk or do—just hear me.Advice is cheap...And I can do for myself.I am not helpless.Maybe discouraged and faltering, but not helpless.When you do something for me that I can and need to do for myself, you contribute to my fear and inadequacy.But when you accept as a simple fact that I do feel what I feel, no matter how irrational,Then I can quit trying to convince you and can get about the business of understandingwhat is behind this irrational feeling.And when that’s clear, the answers are obvious and I don’t need advice.Author Unknown

We just want someone to really listen, without giving advice, without telling us how to feel, without being distracted, without telling us they know just how we feel. We sense we are being listened to when we receive full attention, some eye contact, perhaps an occasional nodding of the head or “uh-huh”. Sometimes their telling us what they heard us say is helpful as is an empathic statement like, “This is a hard time for you”.

Listening is about being truly present with someone. It means giving full attention. It means ignoring external distractions as well as internal ones such as a discomfort or random thoughts. It does not require advising, fixing or talking. It is something we may want from others. It is also something we can offer others.

Mavis GehantHospice Social Worker

Listening: A GIFT WE SEEK AND CAN OFFER

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Shari Kleinjan has worked as a registered nurse for our home health and hospice agency for four years. In that role, she provides nursing care to patients and helps coordinate end of life services for our hospice patients. She works closely with patients and their caregivers, providing teaching on the end of life process, caregiving issues, etc.

Shari especially enjoys the teaching part of her job. She says that she loves to work with patients and their families because she gets to know them on a personal level. The work is so rewarding.

In addition to holding a degree as an RN, she also has an associates’ degree as a medical secretary. Previous work experience includes working five years at the Lake Preston Hospital and working at the Golden Living Center in Arlington as assistant director of nursing. She continues to work there on an as-needed basis.

Shari’s family includes her husband, Dan, who is a dairy farmer. She has two children; Ashley is 23 and is an RN at Sanford in ICU, and Ryan is 22 and will graduate from SDSU in May as an electrical engineer.

In her spare time, she enjoys cooking and baking, being with family and friends and doing anything related to the outdoors.

H O S P I C E T E A M S P O T L I G H T :

Shari Kleinjan

Shari Kleinjan

LaVerne Anderson 10/11/36 - 12/18/12

Julia Colwes 12/12/20 - 12/7/12

Marilyn Geise 7/14/27 - 10/20/12

Evelyn Glanzer 12/15/18 - 12/23/12

Wayne Haensel 5/21/36 - 11/22/12

Darlene Hofer 3/26/30 - 12/28/12

Joyce Kneip 4/1/29 - 12/17/12

Doris Kormendy 5/26/24 - 11/15/12

Nellie Mast 1/4/17 - 12/25/12

Violet Mielke 6/20/23 - 12/16/12

Melburn Munson 7/26/17 - 10/17/12

Charlotte Smith 1/15/37 - 11/7/12

Carol Strande 4/29/31-10/27/12

Brookings Health System Hospice would like to acknowledge with appreciation the following donations (received through 12/31/12):

Donation fromBrookings Chapter #15 OES

Donation fromArlene Hendrickson

Donation fromSt. Thomas More Catholic Church

Donation fromKathryn and James Berreth

We Extend Sympathy to the Families of Patients Lost through December 2012:

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Our goal is to raise $600,000 by June 1, 2013. Please join us and “Make this House a Home!” Give online at www.brookingshealth.org/foundation, mail donation to 300 Twenty-Second Avenue Brookings, SD 57006, or use the envelope enclosed.Brookings Health System is currently building a new skilled nursing facility, The Neighborhoods at Brookview. This $15 million facility was designed and built from the ground up as a state-of-the-art household model facility. This project together with the evolution to resident-centered culture elevates Brookings elder care from good to great. The residents and staff currently living and working at Brookview Manor anxiously await moving into their new house summer of 2013.

But first, we need your help to “Make this House a Home. ” Donations to the Foundation will help fill this beautiful new house with love and life including landscaping, pianos, art from South Dakota artists, piped-in oxygen and new mattresses for each resident room, game tables, a bus and bus garage. These and other additions will help the residents feel at home and provide a warm welcome to family and community visitors.

2 Households

2 Households 2 Households

Phone: (605) 696-8855E-mail: foundation@brookingshealth.org

Thank You!

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Dr. Richard HolmHospice Medical Director

An 80 something year old gentleman came into my office a few months ago with a new lump on his neck. It didn’t hurt; he had no sores in his mouth, and he noted nothing else unusual, except that he had been recently widowed and he missed his wife terribly.

On exam there was a hard lump behind his ear and jaw measuring about the shape and size of an olive. My initial exam of ear canals, hearing, nasal passages, mouth, tongue, and throat found him to be normal. His voice was clear and there were no palpable irregularities of the trachea, which was positioned midline in his neck.

I sent him to the Ears-Nose-and-Throat (ENT) specialist to take a direct look with a scope at the back of the nose, throat, and vocal cords, and

to remove or biopsy the lump. The scope exam was clear, but after the biopsy of the lump, the microscopic exam brought the diagnosis of metastatic squamous cell carcinoma of the head and neck, with occult primary.

In other words his cancer started from skin-like thin sheets of cells that commonly line the upper airways, and the term “occult” is medical lingo for a cancer that has spread from another site but the original “primary” site remains a mystery. I remember another case of a metastatic cancer first discovered in the brain, but on autopsy the occult primary was from the lung. The medical meaning of occult is nothing mystical or magical, just unknown, and sometimes devastating.

Looking for the source of such a head and neck cancer I did some research and learned of the

following risk factors for squamous cancer of the head and neck: exposure to excessive amounts of alcohol; tobacco smoke or chew; wood dust; fine nickel and metal particles; formaldehyde; preserved or salted foods; paan (an addictive leaf or nut chewed in Southeast Asia); and bitter mate (a tea-like beverage sipped in South America).

Our patient is a typical retired college professor originally from a farm on the Dakota prairie, with little tobacco, wood, industrial, or travel history, only having lived a dedicated life helping students and savoring time with his wife.

For now, after removing the nodule, we’ve provided no other treatment; our patient is doing fine. And still the origin for the cancer remains occult.

Here rises a tale of mystery dealing with the occult.

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Are you interested in becoming a Hospice Volunteer?We would like to have you join us! Our hospice program utilizes volunteers in a variety of ways at all levels of skill, from providing companionship to a hospice patient and their family, to assisting with meals, to doing administrative work in our office. We are in need of more compassionate and caring men and women. If you’re interested in volunteering, call Mavis at (605) 696-7700 for more information.

V O L U N T E E R S P O T L I G H T :

Carrie LawCarrie Law is one of the newest volunteers in the hospice program. She grew up on a farm north of Watertown near Florence, S.D. Carrie got to know her future husband, Dave, when she was in eighth grade. Political science and broadcast journalism were her majors as an undergraduate at SDSU. After graduating, Carrie became a TV producer for the Extension Service for the show “Today’s Ag”. She and her husband have three children, Maci, 12, Jackson, 9, and Jacob, 6. Carrie obtained a masters degree in communication and is the Director of Communication and Government Relations at Sioux Valley Energy.

Carrie became acquainted with the benefits of hospice care five years ago when her family utilized hospice for the care of her mother. She said the nurses were very supportive and she does not know how her family would have managed without them. “It was such a good experience.”

She saw that working in hospice is something she could do, visiting with clients and being supportive. Carrie says she has enjoyed her experience with her client, learning about her background and what she enjoyed doing. Carrie believes it is important to provide companionship particularly to clients who may not have family near by or friends who can visit.

At home Carrie enjoys activities with their children. She also likes to experience new restaurants. Carrie is very involved in her church, First Lutheran, having just finished four years of being on the church council. Currently she is involved in youth activities, the Wednesday evening program “Journey” with the pre-school group, and is part of the worship team at the contemporary service.

Carrie Law

We welcome Carrie to the Hospice Volunteer Program!

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Hospice News is published by Brookings Health System. This publication in no way seeks to serve as substitute for professional medical care. Consult your physician before undertaking any form of medical treatment or adopting any exercise program or dietary guidelines.

300 Twenty-Second AvenueBrookings, SD 57006

ADDRESS SERVICE REQUESTED

Hospice Volunteer Meeting…………………………Last Monday of each month

Grief Education Series………………………….Beginning March 7th and every following Thursday for six weeks, with a break the week before Easter. There will be two classes each Thursday; 1 - 2:20 p.m. and 6:30 - 8 p.m.

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