When Families Argue about Patient Care
You'll find yourself from time to time in an uncomfortable place — in the middle of family arguments and disagreements about a patient's care. There may be very good, sound, even reasonable reasons for not telling the patient something, but it may not be the best thing for the patient. Remember that you are not alone in this situation. Nurses enjoy a lot of autonomy and independence in their roles, but this is not the ideal situation for that.
To Inform the Patient?When the family doesn't want the patient to know about her prognosis, you need to listen to the family members and gather as much information about why they think this is a good idea. Perhaps they will convince you and perhaps you can gently persuade them to consider the fact that the patient has a right to know. At least until the M.D. is involved, you need to respect their wishes.
Nurses have a tendency to try to handle situations on their own. But you must remember that health care is a team activity. Beside you and the patient, the physician is also a primary team member. The team also includes your supervisor and the facility you work for, as well as coworkers and multidisciplinary team members who would be involved in this patient's care.
Next you need to gather information from the patient about what she understands to be her diagnosis and what she understands about the things the doctor has told her. This might be difficult to do if the family hovers constantly, but you need to try. Sometimes the patient is very much aware and knows that her family doesn't want her to know so she plays along with it. If that's the case, you just need to be sure to let the rest of the team know what's going on.
When you have gathered your information, go to your supervisor for advice and help. She will want you to notify the M.D., and perhaps he'll okay social services to intervene. Perhaps the M.D. agrees that not telling the patient her prognosis is the best way to handle this situation. If you disagree, then you need to consult again with your supervisor about how to proceed. Sometimes the situation calls for more action and perhaps an ethics committee needs to be convened and sometimes you just have to go along with the decision.
To Inform the Family?When the patient doesn't want the family to know about his illness, this can also be an uncomfortable situation, but patients have a right to privacy. In fact, with HIPAA rules, you pretty much have to act as if the patient has made this request unless you have his authorization to do otherwise.
As with any portion of the patient's care, if his privacy issues are adversely affecting his care or condition, you need to discuss this with the patient and the rest of the team. Discharge planning begins at admission. If his safety is going to be compromised because of secrecy, then the situation needs to be discussed as a component to his care.
For example, cancer has always been the big “don't tell” issue. Your patient, Mr. Johnson, doesn't want to burden his daughter with the news. She has three small children, a full time job, and just can't handle another thing right now. Mr. Johnson lives alone and will drive himself to his daily radiation treatments. He assures you he'll be okay, but he's having severe diarrhea and nausea with the first two treatments he's had in the hospital. How will he safely drive himself to and from the treatments and maintain his nutrition and hydration at home alone? He's stubborn and strong. He's taken care of himself for many years since his wife died. Mr. Johnson stresses that he doesn't want to burden his daughter. After the treatments are done and he's in remission, he'll tell her about the cancer, but not until then!
Does the M.D. know all this? Don't assume he does. Is this his long-time primary care physician (PCP) or an oncologist new to Mr. Johnson? Is he aware that Mr. Johnson is having this reaction? Is he aware that he lives alone and has these intentions?
If Mr. Johnson is going to drive himself to and from these treatments, he won't meet the homebound criteria for home health. You need to be sure the discharge planner involves social services so that they can provide him a list of resources. And you need to impress upon him the need for an emergency contact person who is aware of what he's going through. Mr. Johnson is an accident waiting to happen and while he's under your care, you and your facility have the responsibility to help him plan for his future care and to prepare him to go home and be safe.
Patients who live alone should always have a designated emergency contact person who knows their health care conditions and any ongoing treatments. This may not always be a family member, but the designated person should be someone with whom the patient checks in regularly. This person should be aware of and take responsibility for this role.
You have the responsibility to honor his requests for privacy, but you also have the responsibility to ensure that he understands the possible consequences. You have to make him responsible for his own health status and to advocate for his wellness. Just because he's being stubborn does not relieve you of the responsibility of educating him about his choices and possible outcomes.
