NEW YORK--Dying can be a long process, not an isolated event, and much of it happens at home, said Nessa Coyle, RN, director of the supportive care program, Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center. Ms. Coyle suggested some guidelines for the challenging task of caring for the terminally ill at home during a Cancer Care, Inc. teleconference.
"Although most people take their last breath in a hospital, much of their care over a prolonged period happens at home. So to focus on where patients are going to take their last breath isn't the issue," Ms. Coyle said. "It's more a question of which treatments are going to improve the quality of their life, whatever time they have left and wherever it is spent."
Hospice programs are the centerpiece for helping families care for a dying member at home, yet only 14% of Americans have the benefit of such care when they are dying. "So there are a large number of patients in quite complicated progressive states who are being cared for at home without the benefit of a hospice program," she said.
To enable patients to spend their last days at home, their needs must be evaluated along with the ability of their family and support network to meet those needs.
The medical variables to be considered include the type of disease, the expectation of disease progression, the patient's present symptoms and how they are being addressed, and likely future symptoms. If hospice care is contemplated, the program should be evaluated to see if it provides the services a particular patient may require.
Health care professionals should also be aware of the family's medical problems, and any family member involved in the patient's care should be considered as a "second order patient," Ms. Coyle said.
"You may see a resurfacing of their medical problems when the person they are caring for is debilitated for a long time," she said. "You should become very sensitive to their needs and be supportive. The family's exhaustion needs to be acknowledged when the dying goes on for weeks and months. Often family members experience the same up and down emotional states as the patient."
The availability of community and medical support must be assessed, and Ms. Coyle offered a number of important questions to ask . She noted that once caregivers' availability is ascertained, the health professional should "give them specific assignments, and remember that their availability can change so the assessment must be ongoing."
Assessing the Dying Patients Support System for Home Care
Though the most critical point is a genuine desire on the part of the family to manage the situation at home, control of symptoms is essential if home care is to work. "If the patient has intractable pain, unrelieved shortness of breath, or intractable nausea and vomiting, the family cannot be expected to care for the patient at home," she said.
She noted that the individual who is dying may have an underlying delirium and can become confused. "This can be very frightening for family members, and they need to understand some of the reasons for it and ways of approaching it," she said. Such a symptom can be controlled, she added.
Families need help in recognizing that an emergency situation in the imminently dying has a different focus than when the goal of care is cure or prolongation of life. In the imminently dying where the goal of care is comfort, an emergency situation, for example, is an uncontrolled symptom. Therefore, 24-hour access to a physician or nurse skilled in symptom control is essential.
Ms. Coyle cautioned that health care professionals should not be wedded to the notion that "the only good death is a death at home." If a patient needs to be re-hospitalized for whatever reason, "it shouldn't be viewed as a failure," she said, "but should be built into the plan of care. You need a variety of options, depending on the needs of the family and patient, who should be considered a unit of care."
Spiritual needs, usually involving the meaning of the dying experience, should also be assessed in both the patient and family. For many families, caring for a dying family member at home adds a dimension to their lives that may have been previously missing, Ms. Coyle said.
"The intensity of this spiritual experience can be enormous. And there can be a tremendous void after the patient dies that may be difficult to fill," she said.
Thus, ongoing bereavement follow-up is important, especially if the caregivers have had intensive involvement with many health care practitioners during the dying process. "All those supports that were there when the patient was alive are no longer there when the individual dies," she said.
The health care professional needs to have a high level of clinical flexibility, good listening and communication skills, and the ability to cooperate with the patient and family in their experience, Ms. Coyle advised.
"This is their dying process," she said, "and our role is really to help facilitate what this individual and family want to achieve during this time."