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Realizing hospitals and nursing homes usually do not meet the needs of the dying, the hospice concept caught on like wildfire. Designing a place for people to die was a major goal successfully met in England when St. Christopher's Hospice was created. This has been copied over and over in the United States. Now, a hospice may be connected to a building or, as in our community, may consist of many volunteers that "help" the client through the stages of death.
Over 90% of the people taking advantage of a hospice have cancer. All of them are frail and most are terminal. Some are ambulatory. Some go in and out of the facility if there is one available. Some are in the facility to their end. Many have private rooms and are allowed to make it as close to their own room(s) at home as they wish. They may make the room an exact duplicate. Many are allowed to cook (or have a relative do so), have sex, etc. They are allowed to die in the room, sometimes with their friends present. They spend most of their days socializing with others that are dying instead of being isolated and lonely. If they want pain killers many hospices will allow the patient to determine the dosage - you might think they would try to take a laa-laa amount so dreamland would be permanent. Most are moderate in their intake because they value every second of life and don't want to "waste" it on drugs!
Well-planned hospices have the building constructed with the dying process in mind. There is a lot of window space so life is visible to the patient. Patients can go outdoors and intermingle with non-patients. Plants are abundant. Color is widely used. There might be an area similar to one's living room so patients can interact, possibly in front of a fireplace during the colder months. The morgue is usually placed on the main floor instead of the basement as it is in most hospitals. There should be a library.
The individual rooms can be structured so visitors "have an out." A small foyer, strategically-placed, allows visitors to come to grips with the patient's condition prior to announcing their presence. They also should be able to see the patient without the patient seeing them prior to entry. In that way those that have a change of heart about the visit can bolt.
In our county in New York there is no formal building for clients to go to. Instead there are well-trained volunteers that go to the home or hospital to provide comfort for the dying. The patient must be expected to die in 6 months or less. A long-time member and co-founder of this Hospice, Mrs. Laurie Schwartz, spent time with the kids in the Death Education class in order to give them the feel of its operation. The following is transcribed from her time with the students:
Q. Why did you get into the Hospice movement?
Mrs. Schwartz (Laurie): I've been doing this for 14 years. When I first started it was because my father was dying of cancer and I was 19. I wasn't supposed to know he was dying. There was this big mystery and no one really talked about it. He was told that he had arthritis. So my fear of death was really up there. I was afraid of it. I didn't want it to come into my life, and I didn't want it to affect me at all. So, since that happened some 25 years ago I've come to certain terms with it. I will say right now, for me, that I am not afraid of death. I see death as similar to getting in my car but, instead of coming into New Paltz, I go on my next journey. And, I think if you examine what most people refer to as a "fear of death", is it the "fear of death" or the "fear of dying"? Many people have a fear of dying which is distinct to being dead. Once you are dead you really don't know what's going to happen. I cannot speak to you about what death is, because I really don't know. What I say to people that I speak to is that there is a whole array of thoughts and beliefs about death. The one you believe in is probably the one you've been brought up in.
Q. Your job in Hospice is to make the client more comfortable with their death. How do you go about doing that?
Laurie: I can't make anybody feel anything. I let them know what their choices are. If somebody has a fear of death and they are into religion, we can connect them with their clergy. Many times all the client needs to do is speak. There is very little that can be said to a dying person that will make them feel better because the truth is they are not going to be better. Offering a listening ear may make them better on an emotional level. Many people are afraid they will not say the right thing. It's not so much what you say. It's how you are with the person. Do you reach out and touch them? Many people that are dying are not touched. They are not hugged. They are not visited. Then Hospice comes in and touches and hugs them and it eliminates some of the fear they have. They are the ones going through it and I can only assist them. We also assist the families of those that are dying.
Q. When one of your client's dies don't you feel it? Do you grieve? Do you go to the funeral?
Laurie: I feel it but I have been doing this for a long enough time so I know the difference between them and me. They are the ones that are going through it. I am assisting them. It's not my own personal life. I don't get depressed but I do get sad and there is a big difference between the two. You definitely feel it because these people become friends after a while. They are not just a "client." Sometimes I do go to the funeral.
Q. You say you are a listening post. What are some of the interesting things you have heard from the dying client?
Laurie: Many adults have as their first concern the welfare of their children. One divorced woman who was dying had 4 kids and she really wanted to know for herself that her kids were going to be taken care of by someone she wanted, who was not connected to her ex-husband. Another main concern is to avoid pain. Hospice works closely with doctors in order to moderate and eliminate pain. Paying the bills, especially the medical bills that are so common, is important to many. Dying is very expensive. Usually their concerns in life are similar to their concerns when dying.
Q. Do you get paid for working in Hospice.
Laurie: I don't get paid for this. The reason I am in this is because I get advice and wisdom from the clients. I go home after being with someone who is dying and things that I have taken for granted for the past 3 weeks are all of a sudden in my face. Things that I put off doing I don't put off anymore because I realize in any second that (the client) could be me. All those things you have put off saying should be said now.
Q. Are there people that join Hospice because they have psychological problem, or needs, and are using Hospice for their selfish interests?
Laurie: There is a screening followed by training that is designed to eliminate this problem. If they are found to have psychological problems, they are still allowed to complete the training but cannot be with a client. Some people come into the Hospice training because they want to feel better about death and dying. Let's assume my father died last year and I get a [dying] client that is similar to him. I cannot use the client to transfer my feelings for my father to them. I must approach the client with a totally clean slate. We have had some individuals that have had to be removed from the training and were "shifted" into office work.
Q. Have you seen the 5 stages of dying in the clients, especially the anger stage?
Laurie: I have seen the anger stage and it is often centered around food. You might make a meal for a client and after it is presented the client complains about it. They have the right to be angry but the anger is misdirected. The client might have to have it explained to them that it's not the type of food they are angry at, but it could be the fact they are unable to get out of the bed to make the food themselves. We have a lot of control over our lives. People that are dying often do not. So what you need to do with someone that is dying is to find ways for them to exercise control over their life. You might have them decide what color socks they want to wear instead of just taking a pair out of the drawer for them. The fact they have a definite time for when they will die makes one angry. But, any of us could die before the client.
Q. How do you find clients?
Laurie: We find clients through referrals. We don't go into the hospitals to find people that are dying, but we will speak with doctors, and we do a lot of public speaking. Family members often refer the client to us. However, the client still has the right to privacy. If they don't want Hospice we then try to find other support services.
Q. Do you ever have a client that desires to have sex?
Laurie: Yes. Usually the spouse has trouble handling it. Sex is an important part of life. Because this was an important part of their relationship why should it not continue just because someone is dying? There is a difference between sex and intercourse. What the patient is looking for is being close, intimacy. They want to know that their body is still okay and is still part of who the are. They want to be touched.
Q: Are you able to go home and discuss your clients with your family?
Laurie: If I learn something about me, then I might discuss it with them. Otherwise most of the discussions are held with other members of Hospice.
Q. Would it be possible to have one of the clients visit our Death education class.
Laurie: I think that is possible and will try to get one to do that.
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