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 wastedthe 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
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 moveshe said no. I asked
if she needed anythingshe 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:
I also spent some time with Cathy today. She seems to have ups and
downsbursts 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 roommaybe she is feeling more energy?
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.
became hopeful that she might regain strength over timeshe
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.
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.
makes me think about the boundaries we have as health care professionals.
I had not wanted to leave townafter 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
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 youno 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 timehow 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.
2004 Miriam's House Newsletter:
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.
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.
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.
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
Housenot 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.
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.
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.
a constant struggle for us at Miriam's House."
the struggle all professionals facethe 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.