Hospice Care

The hospice care movement was born out of the concern for doing something for terminally ill and dying patients. Once medical care services for our terminally ill patients were no longer of benefit and our physicians could do no more, we had to turn to another source of care. One of the main objectives of the medical staff is to prolong life at all costs. When the medical staff no longer has the upper hand or mastery over disease and death, that’s when alternative care, such as hospice care can be provided. The hospice practice as it is today and as it was in the past focused on the control of pain for the terminally ill. Hospice care not only manages pain control but it also focuses on the physical, psychological, social and spiritual needs of the patient and their families. Hospice care focuses on reducing high hospital cost for the terminally ill too. Once the hospice care movement was accepted into our society, society was ready to talk about death and dying and caring for terminally ill patients. Our society was ready to support the hospice care movement in whatever way thy could.

Committees were formed to discuss how to treat the terminally ill. This committee wanted to get involved. The community got involved as well as some of the other health care systems. Some of the health care systems wanted to develop hospice care at their facilities. Helping our terminally ill patients through the hospice care movement began to spread.

Hope for the terminally ill has been a major role in the healing process. Hope is necessary for human existence and the concept of maintaining hope until the end of life and beyond life has often been expressed by the terminally ill patient. Hospice care and hope had contributed to the patient’s peaceful end of life. Can terminally ill patients have hospice care and hope? First, lets define hope. Webster defines hope as “trust, reliance,” and as “desire accompanied by expression of or belief in fulfillment.” Hope for the patient with terminal illness has been the focus of care for the hospice care movement. However, for many hospice care patients, the emphasis has shifted to improving the quality of life and providing quality care. Hope with hospice care to the terminally ill patient may mean living without unnecessary pain or living a few more weeks or months. Hope in the hearts of hospice patients may be mixed with thoughts of miracles, faith, comfort, love, concern, disbelief and denial. (Jones, 1989 p. 30) In order to truly understand what hospice care is about, one must first understand where hospice originated from and how fast it has grown.

Hospice was first introduced in this country when Dame Cicely Saunders, who was in the process of establishing St. Christopher’s inpatient hospice in London. Dr. Saunders was a guest lecture at Yale University in 1963. Her lecture was on the concept of holistic hospice care to medical students, nurses, social workers and chaplains. Her lecture also included photos of terminally ill cancer patients and their families in London. Her lecture on hospice care showed the difference between before and after symptom control. This contact of care seem to have set off a chain reaction which resulted in the development of hospice care as we know it today.

Dr. Saunders is regarded as the founder of the modern hospice movement. Dr. Saunders founded St. Christopher in London in 1967. Her direction of care included the philosophy and techniques for treatment of the terminally ill. When planning St. Christopher, Dr. Saunders stated, “The name hospice, ‘a resting place for travelers or pilgrims’, was chosen because it something between a hospital and a home, with the skill of one and the hospitality, warmth, and the time of the other.”(the World Wide Web:http://www.cp-tel.net/pamnorth/history.htm, July 24, 1998, p. 1-2)

After Dr. Saunders lecture, the students at Yale University were so inspired that they opened such a facility in the United States. These students developed and eventually launched the hospice movement in the United States. In 1974, a Connecticut hospice nurse and a volunteer made their first hospice home care visit.

For six years, the Connecticut Hospice Home Care visited terminally ill patients. In 1980 the nation’s first specially-designed, free-standing hospice inpatient care center in Branford, Connecticut was established. In 1988 Connecticut hospice opened the Hospice Cottage to offer care for homeless patients.

Hospice care was practiced long before it was introduced to our civilized countries. There were many time frame for the development of hospice care. I will discuss six that was very significant to our history that helped develop the hospice movement in the United States. First, in the medieval period, hospice care were maintained by religious orders as resting places for pilgrims traveling to the Holy land. Second, in the 5th Century, St. Bridget of Ireland provided care to the lame, lost, sick and dying. Third, in the 11th and 12th Centuries, the hospital Knights of St. John cared for crusaders who would not recover. Fourth, in the mid-1980, Sister Mary Aikenhead and the Irish Sisters of Charity opened a hospice in Dublin to care for terminally ill persons. The modern hospice traces its roots directly to this institution established by Mother Mary, who view death as part of an eternal journey. Fifth, in 1900-1905 Cardinal Vaughn and Mother Mary established the first British hospice, St. Joseph in London. Six, in the early 1900, Dr. Cicely Saunders trained for several years at St. Joseph establishes St. Christopher’s Hospice in London. The United States hospice movement was shaped and molded by Dr. Saunders guidance. In 1974, the first hospice in the United States was opened: hospice of Connecticut in New Haven, Connecticut.

As we can see from the past and the present, the hospice movement was established to provide care for our terminally ill patients. Hospice care is a bridge between life and death. The hospice movement is a response to the traditional way ding is handled by the medical staff, and society.

To fully understand hospice, we must define hospice. What is hospice? First and most important hospice is not a place, but a concept of caring that provides comfort and support to terminally ill patients and their families. Hospice care involves the holistic approach for terminally ill patients with a prognosis of six months or less to live. Hospice care addresses the following needs of the terminally ill patient: psychological, emotional and spiritual concerns as well as the physical care. Hospice care also involves a team of individuals who share their loving by doing. Other services that hospice care provides are counseling and bereavement for family members. Hospice care is available in the patient’s home, nursing home, and hospital facility.

The goals of hospice care are: to control pain and other symptoms, to help patient and family members deal with psychological issues and family concerns. Palliative care and making sure the quality of life are emphasized, rather than cure of the disease or extending life. Pain control is stressed, but not only physical pain but “total pain” - mental, physical, social and spiritual.

Hospice care today differs from other types of health care. First, it differs in the fact that it offers ease from a chronic disease rather than a cure. Second, hospice care treats the person and the not disease. Hospice care involves a team of interdisciplinary members who addresses the medical, emotional, physical, psychological and spiritual needs of the patient and family. Third, hospice care emphasizes quality of health care rather than length of life. Hospice care neither stops or postpones death. It affirms life and regards dying as a normal process that we all must encounter. Fourth, hospice care involves the entire family. Everyone is involved in the patient’s care and all decision making. Hospice care offers help and support to patient and family seven days a week, 24-hours a day. Finally, hospice care supports the surviving families for one year after the death of the terminally ill patient.

As the hospice care movement continue to increase in our society and all over the world, the impact on how hospice care affects the patient, the family and the provider is an issues of whether quality health care is being provided. The question we must ask is: Is hospice care being provided more in the home environment or in the hospital environment? First, the patient should have the right to decide on what type of care they desire. “Informed consent” is a myth. When a patient arrives at the hospital, a multitude of decisions are made about his or her care and the patient is never consulted.” (Paris, 1998, p. 1259) Legally, the patient has the right to decide on how they want to die but they are not always given that right. These rights are sometimes invaded by their physicians. The physician at times finds it difficult to state that a patient is terminally ill. The physician must first uphold the medical model where there is life there is hope and preserve life as long as he can. (Woolf, 1997, p.205) On the other hand, the family of the terminally ill patient do not want to let go of their love ones. They feel with modern technology that they should keep their love ones as long as possible. The hospice patient view his/her rights another way. They want to die with dignity. Family members feel that they will be left alone or maybe they feel guilty for not doing more for their family member when they were more alert and were able to do for themselves. I guess we all feel some guilty at times because we could have done more and we didn’t.

As we continue to improve the patient’s quality of life through hospice care, we must provide patient and family support, team support, pain control and bereavement. Patient and family support is detrimental to helping the patient to cope with death. As human beings we have problems dealing with death and loss. Hospice patients need support to get through each and every day and that includes lots of communication. Not only verbal communication but physical communication. By touching these individuals we are letting them know that we truly love and care for them. Touching reassures them of that quality of life. Hospice care needs team support of care also. This team includes the medical staff, social workers, volunteers, the minister and everyone else involved in the patient’s care. Hospice care stresses that we treat the person and not just the disease. In treating the whole person, we must not forget about management of pain. We want the patient to have as less pain as possible. We must control the patient’s pain and make them as comfortable as possible. When death has knocked at the terminally ill patient’s door, the surviving family will need hospice care to get them through the loss of their love one. Family members who has shared in the care of their terminally ill loved one copes tremendously well after the death. Family members who have participated in the active care and support of their loved ones have no reasons to have any guilty feelings.

The cost of health care continues to sky rocket in our society today. Modern technology continues to climb the ladder that keeps health cost so high. Modern technology is great but is it

affecting the quality of patient care? Hospice care costs are lower than hospital costs because hospice care is geared toward good quality care and less technology. When terminally ill patients are treated in hospitals, cost can be extremely high because of all the technical devices we must use to keep an individual alive. Room and board per day is extremely high too. Most hospice care are done in the patient’s home reducing the patients room and board tremendously. Our modern technology is geared toward the cure of chronic diseases which with the terminally ill patient there is no cure. Why then should hospice care patients pay for unnecessary services and the use of equipment when there is no cure? We shouldn’t forget either, hospice care is not cheap. Operating costs are high and we do have to include staff salaries also. Overall cost per patient for hospice care patients is less than acute care hospital patients. Most hospice care costs are funded by our federal government. I would like to see in the future funding for health professionals’ education on end-of-life-care. I feel that our medical staff needs to be educated more about the availability of hospice care as a resource.

In conclusion, I am greatful for the hospice movement both abroad and here in the United States. Its a great feeling to know that God gave these hospice care individuals the insight and the love in their hearts to reach out and help those in need. Through the hospice care movement, terminally ill patients are provided with love, care, and support. Hospice care is a program designed from the heart to help the terminally ill patient and their family. Although hospice care began centuries ago, its love, practices, and concerns for other people has continued to grow. Hospice patients, even though they are terminally ill and death is evident, need to know that they are still part of a loving and caring family. They know that they are suffering, but to know that a loved one is there is the best medicine they could ever receive. The hospice movement has provided terminally ill patients an environment were dying can be a natural process. Hospice patients are in homes where there is beauty, lots of love, family talking and laughing ,and sharing everyday life happenings. Whereas if the patient were in the hospital environment, they would be in sterile surroundings with doctors, nurses, and machines. The hospital setting is such a cold and demeaning environment. Its a burden for all involved, but the patient can bear this burden better when their love ones are around constantly. Hospice care today shares love that we all should have for each other especially during the end of one’s life. In my research, I observed one thing, the love of the people who saw a need to open up a hospice care program. Once the terminally ill patient accepts the fact that death is near and that they can let go and let God take control they have a peace within that could only come from God. Its good to know that through the hospice care movement families have become closer and stronger and supportive toward each other. Hospice care has helped families to put whatever has caused them to not be a family behind them and totally concentrate on the terminally ill patient. The bond that has grown between families from hospice care services will be cherished in each family member’s heart. Not only has hospice care bonded families together, it has also strengthen the relationships of everyone involved. Hospice care has had such a positive influence on me that I have decided to volunteer my services. Through the hospice care movement new friendships and relationships were developed. It is such a rewarding feeling to know that you have served the needs of someone, especially a terminally ill patient. God has put each of us here on this earth to serve others. I have found through hospice care that we must serve with love which comes from the heart. Hospice care throughout the United States and Canada is a movement that everyone is aware of. The hospice movement is like wildfire it continues to spread. There are currently 2,500 hospices in all 50 states and Puerto Rico. Its as if the hospice care movement has spread sunshine, joy, and love into terminally ill patients when death is near. Through the hospice care movement, the patient can focus on living a fulfilling life until God calls him/her home. Hospice care has touched the souls of many individuals, not only the patient, but families, friends, the medical staff, the minister, and the community. Hospice care is a community within a community of families and friends lending a helpful hand to provide support and love that is so much needed in the terminally ill patient’s life. No one wants to give up their loved one but when the end comes the terminally ill patient will know within his/her heart that they were loved and cared for inspite of their illness. They will remember that they were still part of a family, and that they were able to make decisions regarding family issues. Through hospice care, the terminally ill patient can die with dignity and pride because they were part of a family that loved them and supported them.

Bibliography: the World Wide Web:http://www.cp-tel.net/pamnorth/history.htm, July 24, 1998, p. 1-2)