“What we call the beginning is often the end
And to make an end is to make a beginning.
The end is where we start from.”
-T. S. Eliot
A few months ago I received what at the time seemed a routine phone call. One of my patients who had severe rheumatoid arthritis together with numerous other serious medical issues had been placed under hospice care. For the past three years she has been going downhill. She’s old; the immunosuppressive therapy that kept her pain-free and independent had also weakened her immune system to the point where she had repeated episodes of pneumonia. Her lungs were full of scar tissue (probably a result of longstanding arthritis) that made it impossible for her to survive without constant oxygen therapy. Her heart was failing, and her kidneys showed signs of distress.
During the latest of many recent hospitalizations the decision was made to stop all treatment and send her home to live out what time she had left in familiar surroundings. What we like to call dying with dignity. Her children called to find out if we could change the arthritis medicine (I had been treating her with intravenous infusions) to something that she could receive at home. They did not want her to be in pain if her arthritis flared up in the absence of therapy.
I asked one of my nurses to call in a new prescription. As usually happens to me when the time comes to part with one of my dear patients, I began to reminisce about the time that I met her, and what had transpired since.
She’s one of these souls who always seem to be “up.” I did not know her when she was healthy, but she told me that she was a retired office manager. It was obvious to me that she was used to running the show, and that her employers had been lucky to have her through so many years. She had four children; she liked to cook; she had been widowed more than twenty years before I met her. Even after all of her children left town and she became ill she refused to give up her home. She prized her independence and dreaded “being a burden” to anyone. In the office she was always all smiles; she pushed her oxygen tank with single minded determination, opened her own doors, and seldom complained. All of my staff was tremendously fond of her.
I decided that I needed to see her one more time; that I had to say good-bye. I called the daughter whose turn it was to be around (the children took two week shifts to help her; most came from far away) and set up a time for me to drop in.
Google maps led me to a small, old house on a very quiet street, in the middle of what we call a “changing neighborhood.” I was greeted by a daughter and the hospice nurse. A hospital bed had been brought into the living room. My sweet friend was sitting up on the side of her bed: spry; alert; smiling. Looking nothing like someone who’s supposed to have a terminal condition. Once I had a chance to sit and evaluate the situation, however, I realized that her optimism had misled me. She was using a lot of oxygen, she was still a bit short of breath even at rest, her face was swollen, and it took a lot of effort for her to even change positions.
We chatted for a while. We talked about the past: her jobs; her children; her hobbies. I slowly turned the conversation to her health. She told me that she was not in pain. She was eating well, and she had little trouble getting to the bathroom. I explained about the new medicine that I had prescribed. She said that even if she had no pain she still wanted to go on it.
“I still want to get well,” she said. I could not hold back a look of surprise.
“That’s what we all want, right? Maybe try a new treatment that helps?”
I became uncomfortable. Once under hospice care patients are not eligible to go back in the hospital for treatment (Unless they change their minds). She was not talking like someone who’s ready to die.
“I know I can’t go to the hospital,” she said, as if she could read my mind. “They told me.” She flashed the resigned, accepting smile I had grown so accustomed to. “I don’t want a breathing machine anyway; I told them that.” She looked about the room for a second.
“All of my doctors dumped me.” The smile gave way to the look of a woman who has lost her way. “My primary, the lung guy, the cancer specialist… They all said I did not need to come back.” Silence for a few seconds.
“Except you. You came to see me.” Another smile.
I began to explain about hospice and the medical director, but I caught myself. I realized that she was the one who needed to talk.
For still another one of many, many similar experiences I realized how flawed our existence is, and how imperfect are the solutions we formulate to muddle through life. A woman who will die soon wants to live. She’s not in pain; her kids love her; she enjoys her house and her very limited independence. She should be allowed to go on, but her body has abandoned her and there’s nothing that will bring her youth and vigor back. She will inevitably catch another infection, or her heart will give up, and at that moment is there any point in subjecting her to more needles and treatments? She wants to live but she wants to live well, she hates the idea of inconveniencing her family, and we cannot help her. We offer hospice as our answer.
To compound her distress we have made her feel abandoned. The same doctors that repeatedly saved her life have shed their mantle of authority to the hospice nurse and medical director, people she did not know two weeks before. She will probably never get to meet the hospice doctor. For years she has had these phone numbers memorized, knowing that she will get care when she’s in distress. Now there’s a new face and a new number. Even though she does not say so, it won’t be the same.
I stand up and I give her a hug. I get ready to leave.
“You’re not going to dump me.” More of a statement than a question.
“You can call any time you want,” I say. She smiles again.
“Can you bill Medicare for this?” Always taking care of business.
“I just came to say Hi. As a friend.”
Another smile; this one leads me to believe that she’s relieved and satisfied. Maybe this visit will make her trip into the unknown less stressful. Maybe our imperfect solution will be enough. Maybe.