By Dr. Kenneth Scott, DO, CMD
The first time I met Sarah was upon admission to our facility. She was pleasant and welcoming as I introduced myself as the doctor in charge of making sure her stay went well.
One of her first questions was, “How long do I have to stay?” Sarah was an 85-year-old woman who had fallen at home and was not able to get up on her own. The paramedics had found her on the floor and in pain. A trip to the ER revealed a pelvic fracture, and she had difficulty walking because of the pain she was experiencing.
After a three-day stay in the hospital, she was transferred to our facility for ongoing rehab. I explained that our goal would be to get her home as soon as we could, but we needed to make sure she was as safe as possible and able to ambulate around her apartment. She agreed, albeit reluctantly.
As we look into Sarah’s case further, we’ll see that we had sound medical reasons why she should remain under our rehab facility’s care, but she also had a good reason to leave against medical advice (AMA). The conundrum lies in whether current practice guidelines allow for the best possible compromise that protects the interests of both parties.
A Difficult Situation
Over the next three days, Sarah continuously asked about going home. On day four, the nurse called and asked me to speak with her because she was threatening to leave on her own if we didn’t discharge her.
At the bedside, I found Sarah to be alert, decisional, and adamant about going home that very day. Probing about the rush to exit the facility, I learned that Sarah had a 90-year-old husband at home who had dementia. She was his only caregiver. Finally, it was easy to understand why she was so determined to return home, even at the expense of her own health interests.
I knew Sarah had family in the area and suggested that they could help her husband while we continued to help her recuperate. She reported that she had called them, and none of the family was willing to help take care of him in her absence. She insisted that she leave right then and there.
I called the daughter and got no reassurance that they were looking after Sarah’s husband, nor did she offer support in trying to keep Sarah at our facility for further therapy. The daughter basically said, “She’ll do whatever she wants no matter what I say.”
It was clear to me that Sarah was in a difficult situation. She was worried about her husband and had made up her mind to leave.
Leaving Against Medical Advice
A safe discharge involves an entire team. Thus, I called social services to see what they knew about Sarah’s situation and what they could offer in support. I called rehab to see how Sarah was coming along and get advice about outpatient therapy and what would be safest for her. I talked to her nurse to make sure we had medications to send home with Sarah; she was a diabetic with high blood pressure and hyperlipidemia.
While each department was taking care of details, Sarah became more frustrated with the delay. She began calling the nursing station repeatedly, asking to arrange a ride home. As time progressed, she became more frustrated and stated that she knew her rights: We could not keep her there against her will.
At this point, the rehab department called to tell me that they could not agree with her discharge. Her risk of falling at home again was too high. As far as they were concerned, she would need to leave against medical advice (AMA).
Once this decision was made, processes began to grind to a halt. Social services responded that if she was leaving AMA, she would need to find her own ride. Nursing responded that medications could not be sent with her if she was to sign out without medical approval.
Situations like Sarah’s put a doctor in the difficult position of knowing a patient isn’t physically ready to leave a facility’s care but still wanting to help them navigate their checkout and subsequent self-care in the safest and most caring way available.
How to Best Help AMA Patients
As Sarah’s case so perfectly illustrates, patients who leave nursing homes against medical advice provide a unique problem for health care workers. Close to 50 percent of patients in most nursing homes have some degree of cognitive impairment, which adds another layer to the complexity of whether they are able to make such a decision safely, increasing the risk to the clinician and facility in allowing them to leave.
For patients deemed competent to make their own decisions, David Alfandre, MD, a health care ethicist at the VA National Center for Ethics in Health Care, urges physicians to view AMA discharges as a sign the health care team can do better. Such discharges, Alfandre says in a 2017 interview in Today’s Hospitalist, may be a potential marker of low-quality care and can reduce patients’ likelihood of follow-up.
As Alfandre sees it, physicians have a responsibility to provide informed consent for patients with “a range of available options and make it clear what the differences are between those options, including no inpatient treatment.”
Many health care teams believe that once a patient has signed out AMA, they are relieved of all responsibility and, in essence, can wash their hands of any further decision-making for the patient at that point. As a result, patients often leave facilities without prescriptions, follow-up plans, or extra help, whether that be home health, home or outpatient therapy, or PCP follow-up.
Bioethicists disagree with that stance and suggest that team members do everything in their power to provide the needed resources for success once the patient walks out the door. Their grievances notwithstanding, one study cited in the same Today’s Hospitalist story found that only 21 percent of patients that left AMA were given prescriptions, and only 26 percent were given plans for follow-up care.
That, in my opinion, is not good treatment for an AMA patient. When you’re talking about someone who has a good reason for leaving, they are attempting to make the best decision they can for the situation they’re in. As medical professionals, we ought to be helping that person as much as possible.
Furthermore, a study cited by the Journal of the American Medical Association Network concluded,
Individuals discharged AMA have higher odds of 30-day readmission at significant cost to the health care system and lower in-hospital mortality rates compared with non-AMA patients. Patients discharged AMA are also more likely to be readmitted to different hospitals and to have earlier bounce-back readmissions, which may reflect dissatisfaction with their initial episode of care.
The system needs to do better.
Forward-Thinking Approaches Needed
In the nursing home environment, AMA discharges can often be averted by enlisting the aid of family members to reason with the patient and then stepping up efforts to improve a patient’s individual needs. When that is not possible, providing support where able to help ensure a better outcome is preferred.
Although not ideal, in Sarah’s case, providing home health and home/outpatient physical therapy could potentially allow her the opportunity to be at home and help her husband while continuing to improve her ability to ambulate safely. Since she was going to leave AMA anyway, ambulating down the hallway of the nursing home could certainly result in her falling there as easily as she could at home. Instead of insisting that she find her own way home, providing her transportation and conducting a home check could prevent another fall by removing obstacles to safe ambulation in her house. In assessing the home situation, other issues may come to light that could help her and her husband live independently for a while longer, which was clearly her goal.
In the skilled nursing home situation, most medications prescribed for a patient have been ordered and paid for by the patient’s Part D insurance. Those medications actually belong to the patient. If they are not sent home with the patient, they must be destroyed once they have left the pharmacy. Although medical judgment should come into play—for example, not sending home a bunch of narcotics that could be harmful—if Sarah did not have her blood pressure or diabetes medications at home, not sending these medications with her could help to ensure her failure and rapid return to the hospital. Just because someone refuses to stay in the hospital or nursing home does not mean that they will not be compliant with taking their medications on their own.
Finally, the rehab team cannot write an AMA order in the chart. As the leader of the team, the doctor is responsible for that order and for making sure that the best coordination of care is achieved in each case. Getting the whole team on the same page can be difficult, especially with AMA cases and nursing home policies that may get in the way. The medical director of the facility should be aware of policies a nursing home might have that, for instance, would not allow a patient to be discharged with their medications if signing out AMA. Talking through these policies ahead of time with the heads of departments could help relieve the stress that always occurs when a patient threatens to leave against medical advice.
In the hospital, patients can actually elope rather than wait to sign out AMA. “Elopement” takes on a whole new meaning in the post-acute and long-term care setting, with its own array of reporting structures created by the state and federal government—often associated with tags and potential fines. Being prepared ahead of time for a potential AMA and talking with the team about how to approach these problems with a coordinated effort can lead to a reduction in rehospitalizations, improvement in patient and family satisfaction, and ultimately a better patient outcome.
After all, as physicians dedicated to senior care, would we rather be viewed as compassionate or paternalistic? The answer seems obvious.