Those who provide care for ill family members or friends are vital members of the health care team. Most of them have no formal training and rely to a great degree on what they learn from the attending physician and other healthcare professionals. Since so much care is provided in the home and few physicians make home visits, the following principles should serve as a guide to some of the things caregivers need from doctors.
Communication: Lay persons don’t understand technical, scientific language and may be reluctant to admit when they don not understand what the doctor is saying. The doctor should be sure the caregiver understands what is being said. Caregivers should make notes during conversations with the doctor and the doctor must ask the caregiver to repeat what they have been told to confirm 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 or she can be reached: office, answering service, perhaps pager, fax and e-mail address. 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 caregiver that there is no such thing as an inappropriate question. The doctor should encourage the caregiver the caregiver to write down any questions that arise and present them at the next opportunity. 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 caregiver concern when predicted changes do occur.
Medications: The doctor should provide the caregiver with a list of what side effects to look for. The doctor should indicate when the medications should be given. Also, the doctor should 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 (on a scale of 1 to 10) 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 to them, 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 listed here are available at no 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. The doctor, or someone who works with the doctor, must speak with the caregiver on a regular basis.
Recognition: Most people question their adequacy in providing care to a sick or disabled family member or friend. The doctor must let the caregiver know that his or her contribution is valuable and much appreciated. A word of thanks from the doctor helps sustain the morale of the caregiver. The doctor should also check to see that the caregiver is getting enough rest and adequate relief from other family or professional caregivers.
© 2001 Hospice Foundation of America
Reprinted with permission from Hospice Foundation of America. This article was excerpted from Caregiving and Loss