Many people are affected by end-of-life care in addition to the patient.

This study, while it has a number of limitations, suggests that patients and families need to have much more clinical information than they get from care-givers.

What Can You Do?

• Make a list of questions you have so that you don’t forget an important one. This list helps you make the best use of the time you have with the care-giver.
• If the nurse or doctor does not have time when you ask for a few minutes, ask when you may talk. Let the care-giver see your list to get an idea of how much time you need.
• If the patient is in the hospital, ask nurses for guidance. Experienced nurses are a rich source of information when they can grab the time.
• Many hospitals now have hospitalists, internal medicine specialists who act as the patient’s own doctor for one eight-hour shift. If your patient has a hospitalist, that doctor may be the one to talk to. Ask the nurse.
• Hospice care-givers, which is specifically for end-of-life supportive care, generally do a good job of this. If you have a patient who is dying, ask about hospice services inpatient or at home.

These are not conversations which are easy for care-givers to have. Nobody likes to deliver this kind of news, especially doctors. They are trained to find cures or, at least, improvement whenever possible.

It is rare that a good doctor feels as if he or she did a good job of breaking the news that the patient will die or is dying. It does not matter how many times they have had to do it, it does not get any easier.

If the patient has been in a hospital or other facility for a period of time, the care-givers may have become attached to your patient as well. I have heard many nurses say that they had a hard time when a favorite patient died. “He really was brave.” “She always thanked me and gave me that smile of hers.”

The bottom line is that everyone needs to work at communicating in the critical days toward the end of the patient’s life whether the patient is at home, in a hospital or other facility. You can start the conversation by preparing and finding the right professionals with whom you can talk.

Medpage Today

“Clinicians treating dying patients did well in managing pain but fell short on communicating with patients and their loved ones, researchers said.

“The findings, from a single-institution study, suggest that those who care for terminal patients also often failed to assess shortness of breath in a dying patient whose mechanical ventilation was withdrawn, according to Anne Walling, MD, of the University of California Los Angeles, and colleagues.

“But overall those caring for dying patients met 16 quality indicators 70% of the time, Walling and colleagues said in the June 28 issue of Archives of Internal Medicine. (Emphasis added)

“While aggressive medical care is the rule in U.S. hospitals, “when lifesaving treatments are unsuccessful, patients often die in the hospital with distressing symptoms while receiving burdensome care,” the authors said.”

Source: Medpage Today, June 29, 2010

Citation:Arch Intern Med 2010; 170(12): 1057-1063.