Hospice is about living, about giving people access to what they need so they will have the best possible quality of life during a difficult time. Patients who choose hospice have made the decision — along with their doctor and family — to change cure goals to comfort goals. That is, they are opting for palliative, or comfort, care. Therefore, the main medical intervention is symptom management, including pain control. Because pain can be experienced on many levels — physical, mental, emotional, and spiritual — the hospice team may intervene in any of these areas.
The "unit of care" in hospice is the patient and their loved ones, meaning that hospice cares for both the dying person and their family with a range of services. In addition, the family continues to receive help after the patient dies.
Many people mistakenly associate hospice only with sorrow. However, most hospice experiences include times of joy and peace and heartwarming closeness. People often comment that hospice experiences, although involving a death, give them a deeper understanding of life.
Choosing hospice care for oneself or a loved one can be a difficult decision. Patients and their families may have spent many months or years concentrating on curative care designed to halt the disease process, opting for chemotherapy, surgery, or radiation therapy. Hospice becomes appropriate when the focus on curing is no longer supporting quality of life. Whether they have come to this decision on their own, or their doctor has encouraged them to consider it, patients have decided they do not want to spend any more of the time they have left seeking aggressive curative care.
Hope and healing are always present in Hospice care. Healing may mean not the remission of cancer, but the resolution of distress in the family before death occurs. Or healing may mean that a certain symptom is controlled. A person may be seeking a cure for their spirit with the knowledge that they probably will not find a cure for their body.
Hospice never takes hope away. Hope may be a wish to see a friend or loved one who is traveling a great distance to be at the patient's side. Hope may be for comfort and peace for the patient, family and loved ones — both physically and spiritually.
The hospice team has special expertise in symptom management.
One important part of symptom management is management of physical pain. Pain management is truly an art, involving combinations of medications taken on a specific schedule. Hospice nurses work closely with patients, their personal physicians, and the rest of the hospice team so that patients can be free of pain without feeling "drugged up." Most of the time pain can be controlled. It's extremely rare for a person with competent medical management to die in pain.
A few of the other symptoms that hospice nurses can help relieve are nausea/vomiting, difficulty in breathing, agitation, and confusion. The nurses can also assist with dietary concerns.
Hospice nurses fill an important role in the care of dying patients by acting as a liaison between the patient and family and their personal physician. The value of this role expands when patients become too weak to make regular office visits. It is, therefore, helpful for a patient to enter hospice as early as is appropriate. The more familiar a nurse is with a patient and family, the clearer will be their understanding of the progress of the patient's illness as well as the environmental factors affecting the patient's well-being. Likewise, early referrals allow patients and families enough time to know and trust the hospice nurse before death comes.
Hospice nurses, in short, bring an array of skills to the task of developing a symptom management plan that anticipates problems and meshes as seamlessly as possible with the goals, hopes, and cultural backgrounds of their patients.