Dying is the biggest event in one’s life. A person, aware of their imminent death, must be afforded the opportunity to do this with dignity.
Hospice is a concept….not a place. The care of a terminally ill person may take place anywhere a nurse, trained in the Hospice Philosophy, is available. Care of a terminally ill patient differs drastically from the care of a patient who is expected to be cured, or rehabilitated or an elderly, long term care patient.
The term “palliative care” is sometimes used in the United States to designate a regimen of care with the goal of keeping the terminally ill patient as pain free as possible while allowing them to be as alert and aware. Hospice care is more. A hospice nurse is trained, not only in the care of a person who is dying, but in the support of the family and extended family.
In addition to excellent bedside care, a hospice nurse is sensitive to the phases the patient is experiencing and is there to listen while assessing pain level and monitoring medication. A dying patient should not be expected to turn on a nurse call light and rate their pain on a scale of one to ten in order to be properly medicated nor have to wait until the next dose is due four hours later. Medication must be given before pain returns, not after the pain has escalated.
A dying patient should not be urged to eat or drink. They will not die of starvation. They will die of their disease process. It is a normal response by the family to want to try to get the patient to take food, however, but it could only cause additional stress for the patient. Keeping the mouth, tongue and lips clean and moist with swabs is essential. Simply putting water in a patient’s mouth may allow the fluid to enter the lungs. The patient will not die of dehydration, in fact dehydration is a natural form of anesthesia.
Bowel and bladder functions may be a source of severe discomfort. Narcotics may cause constipation. The hospice nurse will be aware of the patient’s bodily functions and remedy the situation before it causes additional pain. Frequently, decubitus ulcers (bedsores) caused by pressure on bony prominences occur when a patient has been on bedrest for an extended time. Poor diet, lacking sufficient protein, contributes to skin break-down. Relieving the pressure by turning and repositioning every two hours, keeping the areas clean and dry, and gentle massage helps prevent decubitus ulcers. After they appear, it is very difficult to cure them.
Dying is the greatest event in one’s life. A person, aware of their imminent death, must be given the opportunity to talk about death. It is understandable that this is difficult for a family. They may say “Let’s not talk about that now. You’ll feel better tomorrow.” Refusing to listen to the patient diminishes the importance of their death. Listening to what the person is experiencing emotionally, without judging or interrupting is an important duty of a hospice nurse.
When the patient reaches the stage of actively dying, family members at the bedside, may notice the extremities are becoming cold and may appear bluish and “mottled”. In their desire to “hold on” to the loved one, or delay the moment of death, they may want to massage the legs and hands. Not only does this not, in any way, delay death, it is disturbing to the patient. Those at the bedside should, gently, be made aware that this is not helpful…
It may, also, be beneficial to instruct those at the bedside to refrain from requesting the patient to do anything that would require a response or action, such as : “Squeeze my hand if you can hear me” or “blink your eyes”. The dying patient is preparing emotionally and should be allowed a quiet and peaceful time without external stimuli. It is believed that hearing is the last of the senses to leave the human body. Discussing funeral arrangements or dividing assets should take place elsewhere. Talking softly at the bedside may be comforting to the patient and catharsis for the family.
A patient may be clinging to life, feeling they are abandoning their loved ones and need “permission” to “let go”. Hospice nurses are sensitive to grief, not only the grief of those at the bedside, but the grief the patient is experiencing, grief for the life they are losing.
Hospice will do nothing to extend life, neither will hospice do anything to shorten life.
Contributed by: Margaret Hall Simpson, RNBSN
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