There has been a growing recognition in recent years that patients near the end of life need a different kind of care – treatment that focuses on controlling symptoms, like pain and anxiety, rather than attempting to cure a disease. Most doctors and nurses aren’t trained to handle this transition and, until recently, haven’t had the information and tools necessary to do it well. That is changing.
Researchers are beginning to probe the effectiveness of common interventions, often finding they don’t live up to hopes or expectations. For example, recent studies have found that neither antibiotics nor feeding tubes help patients with advanced dementia; they don’t improve quality of life, or even extend life.
“There is no good prognostication - no blood test - to help us know when a patient with advanced dementia is coming toward the end of life,” says Jody Comart, director of palliative care for Hebrew SeniorLife, which runs the Institute for Aging Research in Boston. “Recent research has shown us that when a patient with advanced dementia begins to have eating problems, swallowing problems, and multiple infections, time may be short. This is hugely important for families who are trying to make a good decision on behalf of their loved one."
This kind of research is changing the standard of care and can empower families and healthcare providers to make different - and better - decisions. For example, a dementia patient who is still eating well and enjoying music, but develops a gall bladder problem, could be a candidate for surgery. A patient who is losing weight and getting lots of infections probably needs palliative care.
But to make those kinds of decisions, families and caregivers need to be talking to each other in a meaningful way. Comart says many doctors and nurses are reluctant to initiate such conversations, either because they find them personally uncomfortable, or because they feel unprepared. Justin Sanders, associate director of innovation for the Serious Illness Care Program at Ariadne Labs, agrees.
“They're not well prepared to discuss the kinds of things that matter most to patients when they approach the end of life ,” says Sanders. "Our [palliative care] specialists are trained in, not only symptom management for patients with advanced illness of many types, but also in the types of communication that help people and families cope with that illness and prepare for what may come."
Figuring out what needs to go into those conversations, and how best to discuss such difficult topics, is the goal of research at Ariadne Labs. They have developed a Serious Illness Conversation Guide that helps healthcare providers discuss patients' values, their goals and wishes. It may sound unscientific, but Comart and Sanders say there's a decade worth of data showing that good communication leads to better endings.