Ways to Maintain QOL in the Dying Process

August 1, 1997

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.

NEW YORK--Dying can be a long process, not an isolated event, and muchof it happens at home, said Nessa Coyle, RN, director of the supportivecare program, Pain and Palliative Care Service, Memorial Sloan-KetteringCancer Center. Ms. Coyle suggested some guidelines for the challengingtask of caring for the terminally ill at home during a Cancer Care, Inc.teleconference.

"Although most people take their last breath in a hospital, muchof their care over a prolonged period happens at home. So to focus on wherepatients are going to take their last breath isn't the issue," Ms.Coyle said. "It's more a question of which treatments are going toimprove the quality of their life, whatever time they have left and whereverit is spent."

Hospice programs are the centerpiece for helping families care for adying member at home, yet only 14% of Americans have the benefit of suchcare when they are dying. "So there are a large number of patientsin quite complicated progressive states who are being cared for at homewithout the benefit of a hospice program," she said.

To enable patients to spend their last days at home, their needs mustbe evaluated along with the ability of their family and support networkto meet those needs.

The medical variables to be considered include the type of disease,the expectation of disease progression, the patient's present symptomsand how they are being addressed, and likely future symptoms. If hospicecare is contemplated, the program should be evaluated to see if it providesthe services a particular patient may require.

Health care professionals should also be aware of the family's medicalproblems, and any family member involved in the patient's care should beconsidered as a "second order patient," Ms. Coyle said.

"You may see a resurfacing of their medical problems when the personthey are caring for is debilitated for a long time," she said. "Youshould become very sensitive to their needs and be supportive. The family'sexhaustion needs to be acknowledged when the dying goes on for weeks andmonths. Often family members experience the same up and down emotionalstates 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 notedthat once caregivers' availability is ascertained, the health professionalshould "give them specific assignments, and remember that their availabilitycan 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 thefamily to manage the situation at home, control of symptoms is essentialif home care is to work. "If the patient has intractable pain, unrelievedshortness of breath, or intractable nausea and vomiting, the family cannotbe expected to care for the patient at home," she said.

She noted that the individual who is dying may have an underlying deliriumand can become confused. "This can be very frightening for familymembers, and they need to understand some of the reasons for it and waysof approaching it," she said. Such a symptom can be controlled, sheadded.

Families need help in recognizing that an emergency situation in theimminently dying has a different focus than when the goal of care is cureor prolongation of life. In the imminently dying where the goal of careis comfort, an emergency situation, for example, is an uncontrolled symptom.Therefore, 24-hour access to a physician or nurse skilled in symptom controlis essential.

Ms. Coyle cautioned that health care professionals should not be weddedto the notion that "the only good death is a death at home."If a patient needs to be re-hospitalized for whatever reason, "itshouldn't be viewed as a failure," she said, "but should be builtinto the plan of care. You need a variety of options, depending on theneeds 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 livesthat may have been previously missing, Ms. Coyle said.

"The intensity of this spiritual experience can be enormous. Andthere can be a tremendous void after the patient dies that may be difficultto fill," she said.

Thus, ongoing bereavement follow-up is important, especially if thecaregivers have had intensive involvement with many health care practitionersduring the dying process. "All those supports that were there whenthe patient was alive are no longer there when the individual dies,"she said.

The health care professional needs to have a high level of clinicalflexibility, good listening and communication skills, and the ability tocooperate with the patient and family in their experience, Ms. Coyle advised.

"This is their dying process," she said, "and our roleis really to help facilitate what this individual and family want to achieveduring this time."