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8. Hospizwoche
der Landesarbeitsgemeinschaft
Hospiz Berlin HOSPIZ WEEK SEMINARS at Lazarus Hospiz, Bernauer Strasse, Mitte |
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1st Speaker—Dr.
Gronemeyer, Professor at Universitat Gneissen “Hospice & Palliative Care in “…The hospice question is at the How will the European Culture
deal with the weakest of humanity?” Audience questions highlighted the needs for educated physicians, understanding of pain control versus assisted suicide, the heated debate on assisted suicide, the need for volunteers, nursing home improvement, and the competition between hospice and palliative medicine. 2nd Speaker—Virginia
Fry, MA, Director, Hospice & Palliative Care Council of VT, with Johannes
Introduced
by Herr Director Jurgen Schulz, Bjorn Schulz Foundation and Sonnenhof, children’s hospice. “We are grateful to have Virginia Fry here with us tonight—they have just flown in from the staff and children and families with caring and creativity. But that is not astonishing considering her 25 years of experience in hospice, and we can learn a lot from her. Welcome!” |
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“Thank you, Herr Schulz, for inviting me to “Hospiz in the (I speak only a little German, I am sorry!) But my new husband and Hannes Frank will translate. He knows this hospice work and we will explain this together, beginning with the BIG overview, progressing to stories of our patients and families--and we will do this with pictures! “Two years ago I never expected to come to Germany. I never WANTED to come to There are many things I admire about (Photo of the above) and the creation of the future (Photo—Potsdamer Platz). When Hannes and I began searching for “hospiz” in Herr Director Benno Bolze of RICAM Hospiz (Photos), who is here tonight. We compared statistics and stories of caring for the dying and their families. Herr Bolze then sent us to Herr Director Jurgen Schulz to visit his wonderful kinder hospiz, Sonnenhof (SunshineYard) in Pankow (Photos). How many of you have been to Sonnenhof? (about 8 of 100 people). Go! It is wonderful! I also got to teach many times with Hannes in his Lenau Schule in Kreuzberg, here in grieving techniques with children from 14 different cultures, mostly Islamic, and this was a very good bridge across the cultures. “Now!
To and Walmart—and yes, I am sorry for that. But we have also had hospices for more than 25 years! Here is a map (Diagram) of the where I live.
In with 13 home health hospice organizations caring for about 1200 hospice patients and their families, per year, with an additional
1300 palliative care patients. has one inpatient hospice with 14 beds. Here are the National Hospice & Palliative
Care Organization’s statistics on hospice in I will mention a few points—Of the 3,300 hospice organizations, 67% are not-for-profit, most are home-based care, with some inpatient facilities. Hospices ARE in the nursing homes in of hospice patients have cancer, and here are the other diagnoses. When I began 25 years ago, all hospice patients were dying of cancer. 40% of patients die in hospice within 7 days of admission. These are the people that just want to go home to die--and hospice helps them to get out of the hospital to do that. Here is a graph (Chart) showing the growth of hospices over more than 25 years. They are growing at a rate of about 100 programs a year, which is expected to increase as the population of those over 65
years will double in 20 years. “There!
Enough of statistics! You know
we each come to hospice because of our stories. Here is a bit of mine. This is my 21 year-old brother, David (Drawing) who died in an accident when I was 27. I had worked in a children’s hospital for 5 years, and gone to nursing school. But I had surgery on both of my feet at the same time. And, as you know, you can’t be a nurse without two good feet! So I went back to art, like everyone in my family. But when David died—everything changed. In 1979 no one would talk about death. There were only 2 books in the library on death. There were no support groups. So I used my art to help me process David’s death (Painting.) And this helped me so much—that I went to asked them to make me their “Artist-in-Residence.” But they were not ready for this. So they sent me to the first hospice in is a
new frontier. There is room for an artist to work with the dying in hospice.” “In 1980 there were 26 Medicare Hospice
Demonstration Projects in the We had money to care for the dying at home and to try to prove three things: 1) That dying patients could be identified and cared for at home with good pain and symptom control, 2) That families could be supported adequately, and 3) Above all—that dying at home with hospice care was cheaper than dying in the hospital. We collected statistics for three years and proved all of this to be true, and Hospice Medicare became a benefit for every American
citizen over 65 years of age. It is important to note that the 65, and you have to be dying to be guaranteed
GOOD CARE in Now, many states pay for hospice Medicaid for the poor and the young, but some do not. Most private insurance companies have a hospice benefit of some kind, because it is
cheaper than hospital care. (Later, questions from the audience clarified
per diem
reimbursement rates, separate physician billing, financial shortfalls and necessary fundraising). “In 1980, when I approached my first hospice,
I persuaded the staff that dying is boring! Human beings are creative until death! Even a person in a coma creates carbon dioxide out of oxygen and changes the feeling of the space around him or her. Dying people have a right to be creative and learn and grow and give back life, until death! I began as a volunteer artist and in 6 months I was hired as staff and I have been doing this creative hospice work ever since. Ten years later I got a graduate degree in counseling. “We did not know how to care for the dying, so we learned from our patients. This is Evee (Drawing), the mother of one of our doctors. She had more tubes than anyone I have ever seen. But she was calm and serene and said, “All these people keep calling, and wanting to see me—like I am dying. And maybe I am! But I would rather be drawing!” We met many people like Mr. McKinney (Drawing #1 Before Hospice), who were alcoholic, abusive, angry and miserable. But with the kindness of strangers—and it MUST be strangers who do the care sometimes, when there has been so much hurt in the family—we could get him home. And we witnessed this “Hospice Miracle” (Drawing #2 At Home), of love and growth and healing in the family. When I was trained in hospice, there was no mention of children. We assumed we would only take care of the elderly. But soon we saw children caring for grandparents, and parents and siblings—and even as patients themselves—and we had to learn how to help. Lori taught me (Drawing—Daddy in Hospital Bed) as she drew herself bringing tea to her father who had metastasized melanoma. But we didn’t see that she had no hands! We didn’t see how helpless she felt! But we found ways for her to help her daddy and she drew this picture on
the day he was dying (Drawing— Daddy with Hearts). We didn’t know how to tell Lori that he was dying. No one wanted to tell her—not her mother or the doctor or the nurses or the social worker. But she came to my office that day and drew this picture. I was so moved by the love and happiness with which she filled the drawing--and I told her so. But then I asked her, “WHY is he so SMALL?” Lori stood up angrily, put her hands on her hips and shouted, “Because he’s DYING, STUPID!” And she knew! We learned that the children always know when dying is happening—they just don’t know what it means. And we had
to learn how to explain death to children. (Later, in questions with the audience, we explored these explanations
in detail). “In 1995, I wrote this book with the
children’s stories, so they could teach us and we could respond with creative strategies to help them to cope with dying and death and grieving (Photo of the book Part Of Me Died Too). We have also learned from dying children, like Ruth Ann Burbach (Photo in Belly Dancing veil), who need life to be full of joy and sometimes, even belly
dancing! ( and audience laughs). She confronted her own dying with courage and angels (Drawing of an Angel) and anguish. We found our patients had frightening dreams and
important dreams (Drawing of Mary’s Dream of the Horses). And we had to find ways to help them understand the meaning of these dreams and to find peace. We had to help doctors to understand the dying. I edited and illustrated this “Patient Care Magazine” (Photo) which went to 160,000 primary care physicians. Many articles and this Buddhist story explained
that we need warning that dying is coming—in order to live well and end our lives with peace. We need to find the strawberry—the JOY (Drawing of Hand Holding Strawberrry)—available in every day for our patients, our families and ourselves. Thank you for the important work you do in hospice! (Enthusiastic applause. After this 30 minute presentation, 45
minutes of questions followed. Here is a brief summary…) Is this hospice care being taught in medical
and nursing schools? Yes, in most colleges. But it is still rather new and these schools only recently added palliative care to their curriculums. I often have the opportunity to teach in these places. The medical students always want to know “How do we give BAD NEWS?” And that is a whole other subject! And there are protocols to help. How do you explain death to children? Very concretely. Death is STOPPING. You stop breathing, stop eating, stop moving stop sleeping…These are the important points. You can teach children that the dead body is an empty container and that what we loved of our dear person has separated from the body and is safe. We can do this with a Hand Game, so children will not fear what we do to dead
bodies. (Extensive explanation and demonstration followed) Is burial or cremation harder on children? It depends on how the subject is handled. Children need concrete ways to participate in both. They need to go to funerals and see that it is safe and peaceful and perhaps touch the coffin and the dirt where it is buried. My children were 4, 6, and 8 years old when they took their grandfather’s ashes up the ski mountain where he used to go and put his ashes into the snow so he could “SKI FREE!” This is a law you could change in reason of course, with your loved ones ashes. They belong to you, not the funeral business.
You paid for this service—it is your free choice! (Applause) How do you begin with patients--to teach them
to draw? I don’t begin with drawing unless they already want to do this. That is too intimidating for most people. I begin with this clay (demonstration
and passing of the clay to the audience) and we make then we twist the different colored worms together and roll them into a small ball. Then we can press the thumb into the ball and rub it smooth to make a “Worry Stone.” This clay can be baked in one’s own oven and then kept in your pocket or “Memory Box,” to hang onto during the dying, and to remember the loved one after death. And the children love to make fat worms like this…then a truck runs over them and they get “squished dead!” like this…and then they roll up into a spiral and open up into a ROSE! And death is transformed! How do we involve the community with hospice? By making Hospice BIGGER than dying! We go to schools and teach in the health classes about grieving many things we lose in life as well as helping the dying and bereaved. We go to workplaces and help employees when there has been a death. Hospices respond to sudden deaths in the community, so there is support and follow up through hospice bereavement programs. Many hospice workers have experienced sudden death, as I did, and they were driven to find better ways to help survivors. And this makes hospice relevant to the larger community. How do you get the Hospice message out into
the public? We make friends with our local newspapers and media and find patients and families who are willing to tell their stories to the public. One of our patients wanted to go to luau, a BIG DYING PARTY, and the paper told the story of a young dying woman being full of LIFE, with the help of hospice! The art and creative care help to convey the idea to the community that hospice is not just about the sadness and suffering of the dying and their families, but about living well in the face of death and being supported in bereavement. How do you get financial support for hospice
from the community? Donations of time and money are necessary for hospices to work well. These media stories help to publicize fundraising events, like foot races and golf tournaments, and to recruit volunteers for hospice. In every town in our state, people can vote for the town to support this form of public nursing through money for home health and hospice. What do you do with YOUR drawings? Do you make an exhibit? No! I just use them for teaching, like today. The children’s have been published in this book, Part Of Me Died Too. But I have not done this with my own drawings. What is your typical Monday like? Oh! That’s my long day! From7:30-8:30am I listen to voice mail messages(often 40), return phone calls and plan the day and week for clinical visits and teaching in schools, hospitals, etc.
From hospices and answer emails and plan the next meetings and conferences. From meeting of nurses, aides, therapists and discuss
the business of care giving until Then I go home and feed my children. At run the Bereavement Support Group with my colleague, usually attended by 8-12 grieving adults.
And at POSTSCRIPT from Virginia Fry— “I would like to add-- that I hear and
understand your challenges in finding volunteers. But young people, like old people, often have
a deep interest in death and dying. Young people are looking for connection and meaning in their lives. Helping Hospice can create a lifetime of commitment to community and service through
the personal growth that being with the dying brings to a young
person. Hospice can save their lives!
It saved mine. Thank
you and Good Luck.” |