Most caregivers have no formal training and rely to a great degree on what they learn from the attending physician and health care team. William Lamers, MD, one of the first physicians to develop a hospice program, offers the following principles to serve as a guide:
Communication Caregivers may not understand technical or scientific language — and may be reluctant to admit that they don't understand what the doctor is saying. Caregivers should make notes during the conversation with the doctor; then the doctor must ask the caregiver to repeat what they have been told to confirm that that what they heard is what the doctor indeed meant.
Contact Caregivers need to know how and when to communicate with the doctor. The doctor must provide the numbers where he can be reached: office, answering service, perhaps pager, fax, email. The doctor should also tell the caregiver what to do when the doctor or on-call doctor cannot be reached.
Questions The doctor should assure the caregivers that there is no such thing as a "dumb" question, and encourage them to write down any questions that arise. The doctor should tell the caregiver that it is better to ask a question than to assume anything.
Emergencies The doctor should let the caregiver know what constitutes an emergency and provide instructions about what to do and whom to notify.
Current Condition The doctor should provide the caregiver with an understanding of the patient's current physical and emotional condition in terms that a lay person can understand.
Anticipated Change The doctor should tell the caregiver about any changes that can be anticipated in the foreseeable future. This reduces the likelihood of needless concern when predicted changes do occur.
Medications The doctor should provide the caregiver with a list of the prescribed medications, what they are for, when they should be given, and possible side effects. The doctor should also tell the caregiver to request prescription refills before the weekend.
Records The doctor should tell the caregiver what records should be kept, including notes on bowel and bladder function, sleep, the presence of pain and any other evidence of discomfort. The caregiver should use these records when reporting to the doctor.
Resources The doctor should inform the patient and caregiver of any local resources that may be of assistance, including information about medical supplies, durable medical equipment, home-health agencies and sources of caregiver support.
Documents The doctor should encourage the patient to prepare documents regarding end-of-life care, including a will, durable power of attorney for health care, and orders regarding resuscitation. If the patient no longer has the capacity to make these decisions, the doctor should encourage the surrogate to prepare the documents.
Hospice At the same time end-of-life documents are discussed, the doctor should raise the question of hospice, especially if the patient has a life-threatening or incurable illness. Many of the services and supports are available at not cost to patients with a life expectancy of six months or less who opt for palliative rather than curative therapies.
Follow-up The doctor must assure the caregiver of continuing contact and speak with the caregiver on a regular basis.
Recognition Most people question their adequacy in providing care. The doctor must let the caregiver know that his or her contribution is valuable and much appreciated. A word of thanks helps sustain the morale of the caregiver. The doctor should also check to see that the caregiver is getting enough rest and adequate relief.
Adapted with permission from the author Caregiving and loss: family needs, professional responses. (Ed. By Kenneth Doka, Hospice Foundation of America, 2001).
