A Patient Advocate's View

Life is short.


I was just finishing a long day, having brought my client, age 72 to ECT, stopping at the drugstore and then going out to dinner with her. Everything was going great. The doctors had just reduced her shock treatments from twice a week to once a week and she was getting used to her new memory assisted living residence.

Just the week before, I had taken her to visit with another client, who was in a nursing home. It was disturbing to see someone who was physically fit, but who didn’t remember that her children were grown adults, compared to someone else who was in a wheel chair but had no signs of dementia. The person in the nursing home, age 68 was in a wheelchair since an accident injured her spine about 10 years ago. She was a former art teacher and continued to follow the museums and the opera. Because she required transfer by Hoyer lift, she had spent down her savings to pay for in-home aides. Now she was waiting almost a year to go back home, while the paperwork went through the Medicaid process.

Then, just as I was ready to get in the car, I received a call from a hospital saying that this other client, the one from the nursing home was being admitted to the CCU and could I come right away. This was about 9PM and I hate to drive in the dark, but I was the Health Care Agent and they needed someone to contact about her medical history. I had never been in this hospital, a little community medical center that was close to the nursing home. Glen Cove Hospital was easy to get to, and the emergency room entrance was right by the free parking. I ran in only to see my client being hooked up to all manor of tubes and machines.

I’m writing about this because most of the articles I see about caregiving refer to people in their 90’s, when you can understand that they will be near the end of life. Even in my past experience, most of the people for whom I am called in to produce a DNR or Do not Resuscitate Order are unconscious and therefore I am called upon to use the Health Care Proxy.

But, in this case, the patient was alert, albeit very frightened. The doctors did all they could for the next few days but finally told me that a decision would have to be made. Either the patient would require a tracheostomy and would remain on a ventilator. This would mean that she would not be able to go home, instead she would remain in the nursing home for the rest of her life. She would also require a feeding tube and would no longer be able to speak. Even though the ethics committee doctor tried to talk about the possibility that some people can get off the ventilator, the pulmonologist was kind enough to explain that this usually only happens to younger, healthier people. The reality was, that nothing else could be done to save this patient’s life, other than to give her the kind of life most people dread.

This wasn’t the first time that I was there when a patient had to decide if death was preferable to living without any enjoyment. But, this was the youngest person, someone who only a week before was planning on going home, someone who didn’t suffer from any other life threatening disease. No cancer, no heart problems. She had not written out an advanced directive to talk about her desire for or against being on a respirator, because she didn’t suffer from any illness. The doctors couldn’t explain why her body was just shutting down. A sweet nurse came in and gave the patient a sedative. She said I could leave and come back the next day, when the patient was less anxious.

I was given a traffic ticket the following morning, for running a red light on my way to the hospital. Once before during this hospitalization, the patient had been able to be weaned from the ventilator, and I hoped that I would find her sitting up, a miracle. But, no. The patient was still hooked up to all manor of tubes, although now her eyes were fully alert. She asked for a pad and pen. With the nurse, the doctors and myself at her bedside, the patient wrote out her directions. “If nothing else can be done to cure me and let me go home as I was, then I do not want to have the procedure.”

Over the next week, I came to think of this person as the bravest person I knew. She talked to me about her life and the things she cared about. She did not have any children, which was how I became her health agent and POA. She asked me to go to her apartment and get her will. When I returned with the will, she went over each line to explain to me why she had made each provision. We laughed about cheating death, since the tubes had been removed and so far, she was still alive. She told me that she was satisfied with her life. Then came the morning when the nurses called me at 6 am to say that the patient had passed peacefully during the night. I went to her room to say my final goodbye and found her watching TV and looking just as I had left her, only no longer breathing.

September 4, 2013 - Posted by | Uncategorized

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