May 01, 2010

Mrs. MN, a 74-year-old female, was admitted for short-term rehabilitation after an inpatient hospitalization for treatment of her ongoing small-cell lung carcinoma. She was anemic, neutropenic, and markedly deconditioned. Her plan was to return home with her husband of 47 years and her adult son. She had another son who lived about 300 miles away.

There was nothing in her admission paperwork that stood out as unusual.

Soon after her admission, Mrs. MN's out-of-town son, “Adam,” met our social worker and me, as medical director, in my nursing home office. He informed us that he, too, was a social worker, with a master's degree, who worked in adult protective services in his city. He said he wanted us to know some background on his mother and family.

Mrs. MN, he said, had always been the powerhouse. Well organized and intelligent, she made sure the needs of her family were met. He said she disliked doctors and hadn't sought medical attention for her weight loss and shortness of breath for many months, until she was quite disabled. She remained mentally intact and retained the capacity to make informed decisions.

Unfortunately, neither the father, Mr. N, nor the at-home, younger son, “Seth,” was as capable. Seth suffered from the sequelae of a closed-head motorcycle injury, leaving him with short-term memory loss and disordered decision making. He would try to be helpful and attentive but would become distracted and forget what he had meant to do.

Without seeming to know it, Seth could act sexually inappropriate toward females. Mr. N was an abusive former alcoholic who professed his love for his wife but often didn't follow through, said Adam.

Although they declared otherwise, neither Mr. N nor Seth could care for themselves without Mrs. MN's direction, let alone care for her. Adam reported that his mother's oncologist had contacted the local human services department to report suspicion of neglect or abuse, but after the county worker's visit, nothing further had come of the issue.

Adam said he was concerned about his family: How would Mrs. MN do at home in the care of family members incapable of the job? How could home health care workers support his mother at home if she refused their visits, as she had in the past? What if brother Seth or Mr. N made inappropriate gestures to the health aides? What would become of his brother and father if the powerhouse of the family were to succumb to her cancer? Should he move back to his hometown to be an advocate for his mother and the rest of his family?

We advised Adam that we would discuss all of this at our interdisciplinary team meeting and try to help him make a decision about relocating.

Interdisciplinary Team Meeting

Nurse Manager: Mrs. MN has been treated with three rounds of chemotherapy and has several more rounds planned. However, according to her oncologist, she is too debilitated to continue with chemo. Since her latest round, her weight has continued to fall, but her oncologist hoped that she could be “beefed up” if he admitted her to the hospital and gave her as many calories as she could consume. However, in the hospital it became impossible to determine her caloric intake: Her husband and her son ate food from her tray.

Dietician: Mrs. MN currently weighs 95 pounds, with a body mass index of 17 kg/m

Social Worker: The out-of-state son is correct about inappropriate behaviors. Both father and son have made sexual innuendoes to the staff. The son has asked a number of CNAs to go out for a drink with him. The women have said that he won't take “no” for an answer. When I spoke with him about this, he apologized and said it wouldn't happen again. But he seems to forget. So I have made “No dates or drinks here” a little game between us, at which he always smiles.

The father, however, is a malicious piece of work. When our receptionist handed him change from a meal purchase, he squeezed the bills in her hand and repeatedly asked “Do you know how to make a hormone?” and wouldn't release his grip. When she realized he wasn't letting go despite her demand, she said she would call 911 with her free hand. He laughed and said she just misunderstood.

Nursing Home Administrator: I spoke with Mr. N after that incident and advised him that if I receive a single report of his verbally or physically abusing my staff, I would have the police escort him out of the building for the duration of his wife's stay. The father and son are in our facility in excess of 10 hours daily. I wish they were less attentive so that Mrs. MN could rehab and be discharged. I have advised both Mr. N and Seth that they must limit their visiting to Mrs. MN's room only. I do not want Seth hanging out at the nurse's station or in the staff break room. Mr. N denied the receptionist's version of the event, but I reiterated the new ground rules.

Physical Therapist: Mrs. MN comes to therapy only reluctantly. About 75% of the time, she tells us she's either too tired or in too much pain to be able to participate in strengthening exercises.

Three Weeks Later

Mrs. MN had grown weaker, but she told her physical therapist that her oncologist said her cancer was in remission, though that seemed absurd. She also said that she would be ready to discharge home as soon as her Medicare days were over.

However, she required the assistance of two people to transfer from a bed to a wheelchair or from a wheelchair to a toilet. The physical therapist judged that Mrs. MN would be unsafe at home and would not recommend it.

I called Mrs. MN's oncologist, who said that her tumor was responsive to chemotherapy but not in remission. He also had been frustrated with her and her family because her nutrition at home had been so poor that it was preventing her from receiving the chemo on schedule. “Her functional status is so poor that she would be considered hospice appropriate if she chose not to continue with this aggressive treatment. If she hasn't made improvement in her blood counts by her next appointment, we must discuss palliative care.”

Family Meeting

Attending were Mrs. MN, Mr. N, Seth, and the social worker, nurse manager, physical therapist, and medical director.

Physical Therapist: At this point, we have reached a plateau in therapy. Mrs. MN is unable to support any of her own weight.

Nurse Manager: We have been successful in pain control with the use of a fentanyl patch. She has some breakthrough pain, but usually hydrocodone works satisfactorily.

Medical Director: Mrs. MN, you have said that you want to be discharged home as soon as you finish therapy here. However, you will need help when you are at home. I am aware that your husband and your son live with you, but they will need additional help.

Your home care choices are visiting nurses ordered by your physician under Medicare; home health aides who are paid directly by you that can help with any personal care or housekeeping tasks; or hospice care, which is a Medicare benefit for those patients who have limited life expectancy, want to be home with their families, and are willing to forgo aggressive treatment. What are your thoughts?

Mrs. MN: I want to be home with my family, but I reject the choices you have described. I don't see why I should hire strangers to make my meals and help with my bath when my husband can do this. I don't want to hear about hospice. It is for someone who is dying, and I am not ready to do that.

Social Worker: You need two people to help; what if your husband is getting the groceries when you need to be toileted?

Mrs. MN: Well then, I will just have to wait to go to the bathroom until he returns home, won't I? Since I have an upcoming appointment with the oncologist, we can delay any decision about home care until after he reviews my newest CT scans. For now, we will continue as we have.

Outcome

We never reached a satisfactory home plan for Mrs. MN. Following her next oncology appointment, she returned to our facility with a hospice referral, but she sustained respiratory arrest and died within 48 hours. After her funeral, her husband and Seth had an altercation, which forced the son out of the family home. He said he is considering moving to his brother Adam's home.

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