Normally, topics for my columns are generated by some activity that stimulates my thoughts: a news event, something I have read, an encounter with a person or place. But this one is unusual in that the stimulus is of a personal nature.
Last week my stepfather, Del, passed away. I could say many wonderful things to eulogize him, for he was a wonderful husband to my mother and a wonderful friend and father. However this article is not about him, rather the process which occupied the last weeks of his 97 years of life. Here are personal observations about the hospice system that I thought might be worth sharing.
Death on television is generally portrayed differently than it often occurs in real life. And if one subscribes to the hospice philosophy, death is the final phase of life. Typically the unconscious patient in the ER is hooked to a monitor, beeping away until suddenly it flatlines. The heroic efforts of the medical staff come to naught and one of the staff has the heart-wrenching task of informing the family. Other scenes depict people dying quickly, from gunshot wounds, car crashes and the like.
But dying slowly, with pain, is seldom portrayed. It is a terrible experience, for the one who is ill, for the loved ones who care and even for the medical personnel who are unable to turn the course of events. What is the alternative when all hope is gone?
The National Hospice and Palliative Care Organization, or NHPCO, provides a brief history of the origin of the term “hospice.” It traces “back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, who founded the first modern hospice -- St. Christopher’s Hospice -- in a residential suburb of London.”
According to the NHPCO, “Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University.” Hospice care focused on making terminally ill patients comfortable by controlling their symptoms.
“Her lecture ... included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care” and “resulted in the development of hospice care as we know it today.”
The American Cancer Society promotes hospice care to provide “humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.” The goal “is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones,” often in their own homes. “Hospice care treats the person rather than the disease; it focuses on quality rather than length of life.”
I never really understood what hospice was all about. I knew it had something to do with easing the pain of those who were terminally ill. But in observing what was taking place and in talking with Rita, the hospice nurse, several key points were driven home.
Rita has been working in hospice for many years. I asked her how she felt about being constantly in the midst of death and dying. After several days of involvement in the process, I understood her answers. Rather than being depressed, she felt rewarded by the positive impact she was able to have on both the patient and the family. To her, the rewards were the ability to help ease pain, to deal with difficult health situations in the most dignified manner possible and to help loved ones go through the difficult transition.
She felt that death was not the key problem for the patient. Instead it was fear of the pain associated with dying, an area that hospice directly addresses, and concern about abandoning those who remain -- not being able to provide care or support for them any longer. By suggesting that loved ones provide reassurance that they can take care of themselves she was able to create a sense of peace. More than that all of the people who cared were, in a subtle manner, being helped to prepare themselves for the inevitable future.
A concept ran through my mind related to the finality of this last stage in life, one where terminal illness is involved. Securing comfort and reducing pain takes a person further and further away from reality as the disease expands its domination. As dosages of pain killers increase, the ability to think clearly and communicate and exercise normal bodily functions decrease. The message to me was that, before entering into a hospice situation the patient needs to finish anything that remains undone.
One last thought. The natural tendency when a loved one is in a dire health situation is to hope for a miracle. I’m referring to situations where medical science has exhausted its capabilities, and yet deterioration continues. The agony and sense of helplessness on the part of loving care givers often leads to frustration, anger and health problems. By focusing attention on easing the patient’s distress (and the transition), the hospice system helps loved ones to accept the inevitable. The loss is no less. But it seems that the emotional well-being of those who carry on is greatly enhanced.
Del lived many wonderful years. The last portion of his life was not so wonderful. But I can’t help but feel that hospice made those last few weeks so much better for him, and clearly for my mother, the family and all who loved and will miss him.
Dr. Melvyn Copen lives in both Georgia and Arizona. He is an educator and businessman who has worked and lived in many foreign countries and provides consulting services throughout the world. His column appears every other Wednesday. Please share your comments with him via email at melcopen@hotmail.com.
Last week my stepfather, Del, passed away. I could say many wonderful things to eulogize him, for he was a wonderful husband to my mother and a wonderful friend and father. However this article is not about him, rather the process which occupied the last weeks of his 97 years of life. Here are personal observations about the hospice system that I thought might be worth sharing.
Death on television is generally portrayed differently than it often occurs in real life. And if one subscribes to the hospice philosophy, death is the final phase of life. Typically the unconscious patient in the ER is hooked to a monitor, beeping away until suddenly it flatlines. The heroic efforts of the medical staff come to naught and one of the staff has the heart-wrenching task of informing the family. Other scenes depict people dying quickly, from gunshot wounds, car crashes and the like.
But dying slowly, with pain, is seldom portrayed. It is a terrible experience, for the one who is ill, for the loved ones who care and even for the medical personnel who are unable to turn the course of events. What is the alternative when all hope is gone?
The National Hospice and Palliative Care Organization, or NHPCO, provides a brief history of the origin of the term “hospice.” It traces “back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders, who founded the first modern hospice -- St. Christopher’s Hospice -- in a residential suburb of London.”
According to the NHPCO, “Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University.” Hospice care focused on making terminally ill patients comfortable by controlling their symptoms.
“Her lecture ... included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care” and “resulted in the development of hospice care as we know it today.”
The American Cancer Society promotes hospice care to provide “humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.” The goal “is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones,” often in their own homes. “Hospice care treats the person rather than the disease; it focuses on quality rather than length of life.”
I never really understood what hospice was all about. I knew it had something to do with easing the pain of those who were terminally ill. But in observing what was taking place and in talking with Rita, the hospice nurse, several key points were driven home.
Rita has been working in hospice for many years. I asked her how she felt about being constantly in the midst of death and dying. After several days of involvement in the process, I understood her answers. Rather than being depressed, she felt rewarded by the positive impact she was able to have on both the patient and the family. To her, the rewards were the ability to help ease pain, to deal with difficult health situations in the most dignified manner possible and to help loved ones go through the difficult transition.
She felt that death was not the key problem for the patient. Instead it was fear of the pain associated with dying, an area that hospice directly addresses, and concern about abandoning those who remain -- not being able to provide care or support for them any longer. By suggesting that loved ones provide reassurance that they can take care of themselves she was able to create a sense of peace. More than that all of the people who cared were, in a subtle manner, being helped to prepare themselves for the inevitable future.
A concept ran through my mind related to the finality of this last stage in life, one where terminal illness is involved. Securing comfort and reducing pain takes a person further and further away from reality as the disease expands its domination. As dosages of pain killers increase, the ability to think clearly and communicate and exercise normal bodily functions decrease. The message to me was that, before entering into a hospice situation the patient needs to finish anything that remains undone.
One last thought. The natural tendency when a loved one is in a dire health situation is to hope for a miracle. I’m referring to situations where medical science has exhausted its capabilities, and yet deterioration continues. The agony and sense of helplessness on the part of loving care givers often leads to frustration, anger and health problems. By focusing attention on easing the patient’s distress (and the transition), the hospice system helps loved ones to accept the inevitable. The loss is no less. But it seems that the emotional well-being of those who carry on is greatly enhanced.
Del lived many wonderful years. The last portion of his life was not so wonderful. But I can’t help but feel that hospice made those last few weeks so much better for him, and clearly for my mother, the family and all who loved and will miss him.
Dr. Melvyn Copen lives in both Georgia and Arizona. He is an educator and businessman who has worked and lived in many foreign countries and provides consulting services throughout the world. His column appears every other Wednesday. Please share your comments with him via email at melcopen@hotmail.com.