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Hospice care means taking care of the whole person - body, mind, spirit, heart and soul - at the end of life. It looks at dying as something natural and personal. The goal is to support the best quality of life a person can have during this time. Palliative care follows the same principles but extends them to a broader population that could benefit from receiving this kind of care earlier in their illness. Hospice programs have become one of the most successful ``models of care'' for the terminally ill. In Juneau, hospice and palliative care can be provided in the home, nursing home, or hospital, and may include trained community volunteers in addition to the professional team members. Compassion, comfort and dignity are a high priority. This article outlines the key medical treatments available for those at the end of life.
Physical pain is by far the most common problem encountered by a hospice team. Because of continued advances in the treatment of pain, almost all pain can be treated in a satisfactory way that allows comfort and some activity. Currently, narcotic medications are the mainstays of treatment. Morphine sulfate is commonly used and now comes in a long-acting, slow-release pill that is given two to three times a day. For ``breakthrough'' pain, a ``rescue dose'' of fast-acting liquid morphine can be given orally.
When patients cannot take anything by mouth, there is a medicated narcotic patch called Duragesic that adheres to the skin and lasts up to three days per patch. Finally, a narcotic infusion can be administered via electronic infusion pump when necessary. It is important to understand that there is no upper limit to narcotic dosages. The dose should be increased as needed.
Although physical dependence and addiction are often concerns for the person and family, these concerns should not prevent the use of opioids to control the pain in the dying person. Two different studies illustrate how rare the development of addiction is in the treatment of cancer pain. In one study, only one out of 500 patients treated with morphine developed addictive behavior; in the other, four out of 11,000 patients.
Non-opioid analgesics are also used extensively. Unlike narcotics, these medications have definite dosage limits but can work well in conjunction with narcotics. These include acetaminophen (Tylenol), aspirin, and non-steroidal anti-inflammatory drugs such as ibuprofen and steroids like dexamethasone (Decadron) or prednisone.
Other techniques of pain control include using anesthesia (infusions of opioids into the spinal canal), neurosurgery (procedures such as cutting nerves near the spinal cord or in the spinal cord itself), physical therapy, relaxation techniques, neurostimulation with a TENS unit and acupuncture. Still other modalities are helpful such as massage, music, fans, soothing touches and talk. Personal care of the person can, and should, be taught to family and friends. It is important for them to participate in care throughout the dying process.
As death approaches, many symptoms arise that need treatment. Shortness of breath can be treated quite effectively with oxygen, morphine and Valium-like medications. A scopolamine patch may decrease secretions that develop when swallowing becomes difficult. IV medications may need to be used, but Sub-Q (under skin) or sublingual (under tongue) routes can be used as well. Restlessness or delirium can be treated with sedatives. Occasionally, side effects of narcotics do become intolerable, but a switch to a different narcotic can be made.
When care transitions from curative to comfort (or palliative), there should be a frank discussion among the patient, family and treatment team about management of terminal illness symptoms. Spiritual suffering, defined as a sense of loss of meaning, hope and wholeness, is common. Much spiritual healing and growth can occur if caregivers, listening fully and in a non-judgmental way, truly come to understand their loved one's wishes and allow the patient to choose the quality of life desired during the dying process. Early referral to hospice is helpful to deal with the many important issues that arise. And when all these issues and concerns are discussed - resolved to the fullest extent possible - one can see a peace that occurs in the patient and family.
As you can see, palliative care requires a well-coordinated multidisciplinary team emphasizing quality of life and choice for the dying person and family. It is so very important to preserve independence and dignity during a time when the patient can feel very much ``out of control.''
Bob Urata is the medical director for Hospice and Home Care of Juneau.