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.
"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
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
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,"
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."