This interview is the eighth in a series of brief chats between CFAH president and founder, Jessie Gruman, and experts our CFAH William Ziff Fellows who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
Carol Alter is concerned that 'there is an assumption that every patient has a spouse or partner or daughter to help with the health decision making. But, 'there often isn't.
Gruman: What stands out for you as a particularly important focus of patient engagement?
Alter: I am interested in what an individual is able to do for themselves. What are their strengths and weaknesses? To what extent can they be engaged? And to what extent can the system facilitate that?
Gruman: How does this play out in your work as a psychiatrist?
Alter: I am now running the consultation-liaison service at Georgetown Hospital, so we see patients referred by their medical teams if there are concerns about psychiatric disorders or for other coping or mental health concerns. I saw a person recently who had developed paraplegia (inability to walk) after having spinal surgery. At the time we saw him it was not clear whether his functioning would improve or not. ' His medical team wanted us to help with his anxiety. The man is divorced, in his 50's, retired from the government, but now working on his own as a consultant.' He has no kids, no partner, but he has a group of friends and an active church community, all of whom live about 60 miles away from the hospital.
Gruman: What is going to happen to him now?
Alter: Even though the medical team says they have explained the medical situation to him, including explanations regarding timing, chances for potential improvement (or not), next steps etc., he states that no one has told him anything about his condition or next steps. He is extremely upset; he can't process the information. He is resentful because he feels like he is being told what to do. It looks like he will be sent to a sub-acute rehab facility where at most he would get 2 hours of physical therapy a day and that's all. Who is helping him think about this? Who is advocating for him to get more or better? If he had family, they would be advocating, Why are you sending him to this place? Why not another? What treatment has the best chance of return to functioning?
Gruman: Who is responsible in such a case?
Alter: While the hospital and the medical team have the responsibility to meet the patient's needs for care, safety and comfort, there is also an assumption that every patient has 'people' who provide support to them. What happens if the patient doesn't have a father, mother, spouse or child to help guide the way?' While our hospital has implemented a number of quality based initiatives to improve patient communication, discharge planning and care coordination, they all rely upon an active, engaged patient or family in order to be maximally effective.' If the patient can't fully advocate for themselves and if there is no one to do that on their behalf, the hospital is limited in what it can do to provide additional resources to be sure the patient is receiving the best discharge.
Gruman: I thought hospitals had to be prepared for such situations
Alter: On one end of the spectrum, if someone lacks the cognitive capacity, the hospital and the legal system invoke a set of actions which allow others to help with decision making or to assure that the patients' best interests are considered fairly.' But what if someone is cognitively intact, but has no social support, and they can't adequately advocate for themselves?
For this patient, the primary physician said, 'We spent hours with him.'' But this man needs something else. He's anxious, worried, alone, afraid. He's sick. He can't bring everything to the table that he needs to do to make decisions. The system assumes that there will be someone there. There often isn't.
More patient engagement inteviews with our Ziff fellows by Jessie Gruman