In the Spirit of Medicine: you need to hold my hand

By Arne Vainio, M.D
News From Indian Country March 2011

Agnes came into my life on a Monday morning as I was finishing a weekend of call. My pager informed me my blocked schedule had been overridden as I had an extremely complicated, new patient with cancer who needed to be admitted to the hospital.

She was in a wheelchair and there was a social worker with her. She had over a hundred pages of medical records. She had been hospitalized in Nevada for vaginal bleeding and had been diagnosed with cancer of the cervix in the past few months, but didn't follow up for care after she was discharged. She had a history of alcoholism and a non-specified psychiatric disorder. From her records, homelessness and lack of insurance were huge barriers to her getting care.

She was anemic and had a transfusion in the hospital and was supposed to come in to start chemotherapy for her cancer. She was also in atrial fibrillation, which meant her heart was out of rhythm. She was started on Coumadin (a blood thinner) to prevent blood clots in her heart from causing a stroke. However, she didn’t follow up to monitor it and the Coumadin was stopped as her risk of bleeding was too high.

Since she was homeless and had no insurance, there was no way for her to get chemotherapy. She was enrolled on the Fond du Lac reservation, but had never lived there. She somehow ended up on a bus for Minnesota to see if she could find the treatment she needed. She arrived on the weekend and the social worker and nurses stayed with her in the casino as it was the only place they could find a room. I did a brief exam in the clinic and called one of the oncologists and we sent her to the hospital by ambulance.

A scan at the hospital showed the cancer had spread to her lungs and into the bony areas at the top of her chest and was now widely metastatic. Regular pap tests would have prevented this, but it was too late now and too late for chemotherapy to do anything. Her cancer had eroded into her bladder and bowel and was causing incontinence of urine and stool. She had a catheter placed for her urinary incontinence and passed a large blood clot through it. She then developed swelling in her left arm where her IV was. Another scan showed she had a large blood clot all around her bladder and another one in her arm. Since she was in the hospital, she was started on Coumadin again. Within two days she started having heavy vaginal bleeding from her cervical cancer. The Coumadin was stopped and she had a vaginal packing procedure done to try to put pressure on the cancer. She bled through all dressings and needed emergent radiation treatments to her pelvic area to cauterize her bleeding.

She still had no insurance and we were unable to get her into a hospice facility, so she ended up staying in the hospital for well over a month. When the Oncologist told her initially that her cancer was spread too far to treat, she didn’t believe him. By then, I already knew her well and she trusted me.

?Dr. Vainio, am I going to die? ?

?Yes.?

?And there’s nothing you can do? ?

?No.?

?I’m afraid to die. Should I be? ?

?I don’t know, Agnes. I don’t know.?

She was completely alone. She had no one back in Nevada and she told me of a son who was taken away from her when he was 3 years old. She didn’t know anyone on the reservation. Her only visitors were doctors and nurses, but no one she could sit with and just talk to. She gave me her sons name and where she thought he lived. I searched the name on the internet and found him. I called him and let him know her entire story as I knew it and her grim prognosis.

?I always wanted to find my mother and 16 years ago I did that. I went to Nevada and I spent 3 days with her. All she wanted to do was drink and she didn’t want anything to do with me. I’m glad you called me and I’m glad you’re her doctor. I have nothing in common with her and I wish her the best of luck.?

He sent her an envelope full of pictures, but she wouldn’t open it. ?It might make me too sad.?

She continued to dwindle. She wasn’t eating and she rarely drank anything. I always asked her what she wanted. ?A vanilla malt.? I brought her one, but she only took a sip. ?A hamburger.? She only took a tiny bite from the edge of it.

Ivy and I brought her Thanksgiving dinner from my sister’s house, but she only picked at that. She rarely got out of bed and the shades were always down.

She finally transferred to a nursing home and I didn’t see her on a regular basis. A few days before Christmas, the nursing home called me and said she was barely responsive and refused to sign the ?do not resuscitate? form required for her to be there for end of life care.

This was urgent and the supervisor at the clinic blocked out my morning schedule. Agnes was lying in bed and she was so wasted away I could clearly see the bony structure of her face, hands and chest. Her lips were cracked and her tongue was swollen and dry. Her eyes were sticky as she was too dry to make tears. She barely had enough energy to keep them open.

?Agnes. What do I need to do to have you sign this form??

?You need to hold my hand.?

So I did. I sat with her for that entire morning as she was getting ready to die. I asked her about her childhood, but she didn’t want to remember it. She was too weak to talk and she wanted me to tell her about my family. I told her about being a husband and a father and how important that was to me. I told her about my mother, my brothers and sisters and about growing up. I read my story about my cousin Frank to her and asked her if I could tell her story.

Yes. Please do.? She closed her eyes and fell asleep. She and I both knew this was the last time we would talk. I sat next to her and watched her sleep for a long time. She seemed more comfortable and more at peace.

As I finally let go of her hand, she slowly opened her eyes and smiled at me.

Thank you, Dr. Vainio. I’m not afraid anymore.?