Learning to be Present . Ali C. Welch

Prior to starting medical school, I worked at a home for AIDS patients in Washington DC. On my second day at Miriam's House, a new resident, Cathy, moved in. She was a hospice patient. This first experience with the death of a patient was a valuable experience in how to serve these patients best. Cathy was very wasted—the closest thing to a human skeleton that I had ever witnessed. I was uncomfortable when she came into the dining room to eat. She was so skinny and had many sores on her skin. She spoke softly and it was clear she was too weak to speak or eat much. She spent most of her time in her room, and I remember barely seeing her in the next week or two. When I was working at night, I would usually stop by her room to check in and see if I could help her with anything. She always said "no," and I never pushed the issue. My journal entries from that time reflect my fear and anxiety in working with her. I think I was a little afraid to spend time with her and to experience her suffering.

8/25/01
I stopped in and spent some time with Cathy tonight. She didn't respond at first until I touched her. She was in the fetal position with her head and shoulder off the bed. I was so scared when I walked into the room. I offered to help her move—she said no. I asked if she needed anything—she said no. So I left. I feel I should have stayed with her a while. But it was dark and late and frankly I was uncomfortable. I am sorry that I could not do more for her.

A week later, I spent more time with her:

8/31/01
I also spent some time with Cathy today. She seems to have ups and downs—bursts of energy and lots of time where she looks miserable and close to death. She seems to be ready to let go at times, and then fighting for life at others. She is spending more time in the dining room and living room—maybe she is feeling more energy?

At the end of the night, I decided to check on her. I ended up staying with her well past the end of my shift. Sometimes I find it difficult to spend much time in the room. If she is not responding, I feel that I'm not really doing anything. I was happy that I was able to help her tonight. She indicated that she wanted something to drink. So I gave her some juice. She kept wanting more but was unable to sip it well. I grabbed some of the sponges on sticks and gave her juice that way. She devoured it! But she was impatient to get more. I found a small 3cc syringe in the nurse's office and decided to squirt juice into her mouth. I asked her if this was better and she said "Yes" loudly. She also kept asking for more. I spent over an hour slowly giving her squirts of juice.

I became hopeful that she might regain strength over time—she clearly wanted nourishment of some kind. She has not had much to eat or drink in days. At this point, I am mixed between wanting to help her regain health and wanting her pain and suffering to end. It seems she has more bad days than good. I feel like I'm very focused on finding a way to help her heal.

Oftentimes, when approaching patients, I want to think in terms of healing and curing. But it's not that simple. That evening, I was racking my brain to think of any way possible to help her eat, drink, and improve. The next morning, I left early and traveled to Durham, NC to visit some of my college friends who were still living there. I was hopeful about Cathy's improvement and several times I thought to call and check on her. I had left a long note for the other staff members to know about her increased energy and to let them know how to help her drink more fluids. I returned from Durham, hopeful to hear how Cathy was doing. At the start of my shift, the director told me she had passed away. She passed away the day after I had spent that late night with her. Life is so precious that sometimes when you start to regain hope, the end is near. I was disappointed. But I was not frustrated that she had died. I have always been able to feel peace at times of death. She was no longer suffering, and my faith told me that she was in a better place.

Cathy's passing makes me think about the boundaries we have as health care professionals. I had not wanted to leave town—after spending time with her, I wanted to be by her side. I wanted to be the one helping her get better. I also felt guilty that I was not there when she passed. I spent a three-day weekend enjoying myself and not knowing that she wouldn't be there when I returned. As a medical student, I have also found it hard to go home at times. Sometimes there is a patient who is struggling and I feel a responsibility and a personal desire to be there with them. I want to help patients and therefore I want to be there for them when they need help. It is not always easy to let go and head home at the end of a day.

I continued to think about Cathy and to be moved by this first experience with a dying patient. I felt the last evening I spent with her was a very special time. I thought about how I had been afraid to visit with her earlier. It was a combination of my fear and her defensiveness. I believe she was lonely and scared and wasn't sure she wanted to open up to others whom she didn't know very well. I am disappointed that I avoided her because of my fear. A PCA and I discussed this one day shortly after she passed.

10/10/01
Earlier today Susan was telling me about her cousin who had a skin disease which covered him in sores. She told me how he cried after they went to the DMV and everyone in line near him stared at him and backed away. She told me what she said: "It is hard to look at you. It is so much for someone to take in. It makes me want to cry sometimes. The easy thing is to look away and to stay away from you. But you are my cousin and I love you—no matter how you look." Then we talked about Cathy, and how she was extremely ill when she came to the house. She was skin and bones and covered in open sores. Her spirits were also very poor. Even her hospice nurse said she was unbearable to look at. Susan said that the first time she went to change her, she had a strong reaction when she saw her whole body, so frail and covered with sores and almost devoid of life. She said her eyes welled up with tears and she left the room thinking ‘there is no way I can do this'. But who would do it? Susan got herself together and went in to change her. When I saw Cathy, she was frightened. She had a very defensive attitude and often I would check in with her and then leave. I justified the briefness of my visits because she seemed to not want me there. Really, I think her attitude was a matter of pride. Also, it must feel terrible dealing with the slow onset of death and the lack of family presence. And I can understand why her family was not at her side all the time—how awful to see a loved one so frail and close to death for so long.

During my psychiatry rotation as a third year medical student, we were consulted to see a medical patient and to evaluate her for depression or an adjustment disorder. She was a young African-American with several young children. Her doctors had just given her a diagnosis of AIDS and she did not want her family to know she was HIV positive. She was very sick and when we met her it was clear that she was in a great deal of physical and emotional distress. She immediately made me think of my experiences with Cathy. I wanted to spend more time with her. I learned throughout my year at Miriam's House that often it is the intangible that helps the patients feel more whole. I wrote an email to Carol later that week about this patient. She asked if she could quote it in the next mailing from Miriam's House.

Winter 2004 Miriam's House Newsletter:

"As Tim and I had just begun mulling over what to say in this appeal letter, I received an email message from Alison, a former resident intern. She was responding to a periodic update I send out to former interns as a way to keep connected and to let them know what is going on in the lives of the residents and staff of Miriam's House. Alison, in her reflections, said something beautiful that struck me so powerfully I got her permission to share it with you. Alison is a third-year medical school student:

School is going well. I have been doing psychiatry and it is a great learning experience for me. It's also helpful to have experienced some of the patients' perspective of things. I can never know what circumstances they come from, or how they think about things. But the time at Miriam's House has helped me to have a little more insight. One of the patients on our service was a 36 year old female who was recently diagnosed with AIDS. She has two children that do not know about her HIV status and she did not want any family to visit and find out. She was very wasted from the disease when she came into the hospital and was in a lot of pain. On rounds one day, the attending asked her how she was feeling. She said "I just want someone to sit through the pain with me, so I don't have to lay here alone." I had two thoughts on this.

First, I thought: finally, something I know how to do. And then this was followed by realizing that as medical students and as doctors, we don't get the time to do the little things too often. We continued rounds by seeing the next patient on our list. I intended to go back when I had some free time, but never did. I prayed that someone found the time to sit with her. I also remembered the times I sat with residents at Miriam's House.

The work of an intern is hard - it often feels like no work at all, but it is REAL work. And it's a time to be with people in ways no other job allows. I'm so thankful for that experience. I hope all this year's interns continue to appreciate and embrace the unique opportunity before them.

Alison writes specifically about and for the interns at Miriam's House. Yet what she describes is the struggle at the heart of the work of Miriam's House—not only for the interns but for the rest of the staff also. Alison raises the question about the real and the REAL work of any of us who offer care to others, whether it is at work, in our family, or among friends.

There is no intention to create a dichotomy, an either/ or: the fact is that real work and REAL work need to be integrated. People need technology, medicines, nursing care, case management and a well-run organization, as did Alison's patient living with AIDS: she needed the doctor's expertise and care so that she could regain health. And this is not in any way to denigrate the real work that we professionals do to improve quality and length of life.

But we create the either/ or in our institutions: our institutions reflect the division in our own spirit. What Alison reminds us is that real work and REAL work need to go hand-in-hand, and that without REAL work, something terribly important of heart and spirit is lost. Her caring heart feels the sorrow of that and understands the significance of a lesson deeply learned at Miriam's House.

It is a constant struggle for us at Miriam's House."

Carol describes the struggle all professionals face—the balance between the "necessary" work and the work that provides us with the strength to continue to work hard. I know that I personally need these moments of sharing and simply being with the patients I work with as a way to sustain my spirit. The paperwork, insurance companies and other daily obstacles can wear down most physicians. I'm quite certain that none of us chose to go to medical school to argue with insurance companies or to spend half of our day on paperwork. Early in my clinical rotations, I was surprised by how little time we spend with each patient on a daily basis. We spend a great deal of time talking about the patients, ordering tests, following up on results and planning for their discharge and follow up appointments. However, we only spend about five or ten minutes each morning with the patients and we may or may not stop back to see them later in the day. Unfortunately, the stuff that keeps us so busy is exactly what needs to be done to care for the patients, but I can't help but feel that something is missing.

This first experience with death taught me gently that we shouldn't avoid people who are suffering. Time is precious. I should face my fears and get to know people. It took me almost four weeks to spend any great amount of time with Cathy and to be attentive to her needs and desires. Although it is often difficult to find the time to spend with patients and simply acknowledge their suffering, I try to use this memory of Cathy's last weeks as an inspiration to take a few moments with them.