Morning Rounds: Family, Social Connections Can Play Critical Role in Health Care Decisions
TO YOUR HEALTH -
Thursday, March 19, 2015 8:46 AM
For most physicians, most of the time, medical decisions are pretty clear-cut.
If a patient is sick, we help them get well so they can have a better quality of life. But when our therapies are no longer enough, particularly at the end of life, the decisions become more difficult. That's when family and friends are most important.
I learned this early on in my medical career while serving as a resident at a large hospital in California. One of my patients was an elderly woman in her 80s who was dying. Her organs were beginning to fail. She had an infection and pneumonia and she was in increasing discomfort.
For a time, she had been in the intensive care unit breathing with the assistance of a ventilator, or breathing machine. Her condition had improved for a short time and she was able to get off the ventilator, but she soon relapsed and it became clear that she was not going to get better.
This woman had a grandson who visited almost every day. He would sit and talk and just spend time with her. His visits were the high point of her day.
Since his grandmother could no longer speak for herself and we were not able to connect with other family members, we talked with him about her options. He agreed we should continue to give her care but not put her back on the ventilator. Essentially, we would allow her to die, since we could no longer offer her either quality of life or hope of recovery.
About a day later, I was called up to the woman's room, where there were about a dozen irate family members. They berated the young man for agreeing not to use every medical option available and demanded that the woman be kept alive as long as possible.
So we put her back into the intensive care unit, where she needed a ventilator to breath and we used every medical means at our disposal to keep her alive another three weeks, as she slowly wasted away.
During this period, the rest of the family visited the woman exactly once.
Providing invasive and uncomfortable medical care for someone who has little chance of recovery is sometimes referred to as "flogging" in the medical world. It is a harsh term, but it is descriptive of how it feels to provide care that seems unnecessarily uncomfortable when there is no hope of recovery.
Doctors are trained from medical school to preserve life. But at the end of life, when medicine has few answers, quality of life becomes an important consideration.
Family and friends who have ongoing relationships with patients, who visit them and talk to them, add immeasurably to their quality of life.When patients can't speak for themselves, family members who understand the patient are their best advocates. They tend to make decisions that find a balance between quality of life and treatment.
Familiar faces and social bonds are even more important when it comes to the treatment of people with dementia, a large and growing group of patients for which medicine currently has few therapies.
What works best for patients with Alzheimer's or another type of dementia is being treated in familiar surroundings by people they recognize. Family members who help caregivers understand a patient better, who know what kind of activities or music they like, are enormously helpful. Regular visits from family add immeasurably to patients' quality of life.
When family members are not involved, as advocates and members of the caregiving team, outcomes are often not good.
While I was working a shift in the Emergency Department of a large urban hospital, an elderly man with dementia was one of our patients.
He lived alone and had no family nearby and had become confused and increasingly agitated. We first tried to calm him by assigning a nurse to spend time with him, but when the man became increasingly agitated, he was given medications to calm him.
When we did reach his family, they were too far away and too busy to visit. They asked us to find an appropriate placement and they weren't happy when we told them there were few options.
Unfortunately, because of the difficulty and expense of caring for people with dementia who become violent, it can be very difficult to place those patients. Medications can help control symptoms, but too much can shorten life.
For that patient, as for an increasing number of patients in our aging society, the answer, so far as we have one, is an all-hands-on-deck approach, with family, providers and, to a lesser extent, medication all playing a role.
I can't recall what the ultimate outcome was for that particular patient, but I remember thinking, after talking to his family, that for him the outlook was not a good one.
Mark Fourre, MD, is an emergency physician and Chief Medical Officer of Lincoln County Healthcare, the parent company of Miles Memorial Hospital and St. Andrews Hospital. He also serves on Lincoln County Healthcare's Board of Trustees. Prior to joining Lincoln County Healthcare, Dr. Fourre was attending faculty at Maine Medical Center, where he developed the Emergency Medicine ]Residency Program and served as Residency Director.