Look at the Hand

I was working as a case manager with a local hospice when my grandmother was diagnosed with lung cancer. She was in her late 70s, had been smoking for 60 years and had dealt with severe bouts of chronic bronchitis most of her life. The day she entered the hospital, I flew to Tampa. At first we thought she had a bad case of pneumonia. We thought she was dying. I slept on an air mattress in the room with her for about a week until we knew she would survive it. During this week we were told her pneumonia was due to a cancerous tumor obstructing her lower lung. She made it past the pneumonia, now all we had to deal with was her cancer.

I had hoped she would die peacefully with pneumonia because there was already talk of chemotherapy and radiation on my petite, chain-smoking, lung-scarred grandmother. She told me if the oncologist said she should fight it, she would. The surgeon told us, as did another physician, that it would not be advisable to pursue cure-directed treatments in her condition. She chose to believe the oncologist. He told her of the statistics that said she could beat it. They say there is a bad apple in every bunch.

I was chomping at the bit. I had to keep quiet. My grandmother and mother did not want to hear anything I had to say because anything that came out of my mouth was ‘hospice.’ When I would begin to talk, her eyes would glaze over. My mom would get an irritated look or tone and it was clear that I was to be quiet. I cried so hard—alone—because I knew what was coming for her and I knew she wouldn’t survive it.

She suffered a lot. Her symptoms were poorly managed, yet with what we know in the palliative care arena, they could have been easy to treat. She was nauseated, extremely agitated, very scared, not able to be alone and when she wasn’t in the above states she was highly anxious. All this manifested in her being irritable most of the time with fits of anger. She quit smoking but was not offered a nicotine patch, only a mildanti-nausea drug and a very low dose of anti-anxiety medication because she could become “addicted.”

Every time I talked with my grandmother and mother and they told me of the things that were going on, I would suggest something and they would say “…if it gets to that point, we’ll try it…” I started off in the beginning begging that she try ‘whatever’ now because what I was suggesting was OK for anyone. I told them she didn’t have to be dying to use these medicines that worked. As time went on, I quit suggesting.

Her last 5 months were spent in misery, ever hoping that she was going to win the fight and never getting better, just getting worse. She was never told that maybe it was time to let go of these treatments that were not beneficial and that were only causing her misery. She entered hospice about a week before she died. She was not managed well with them either. She had an agitation they never did get under control. In my practice I had not had a patient yet, that presented as she did, that our team could not get under control. They were not using the medication we used in our agency. My mom wanted me to not ’stir things up’ and anger the nice hospice folks. I thought I was going to die from the pain I felt.

When my mom and I left to arrange her funeral she was virtually unconscious. I say ‘virtually’ because she was still moving, fighting—it was unrelenting. My mom and I were gone 20 minutes when my sister called me and told me to bring my mom back quick. My grandmother died just before we got there.

There was no dignity for her those last 5 months of her life and she was a very proud woman. She was intelligent, beautiful, articulate, a seeker of knowledge and one of the people in my life who gave me the kind of warm and fuzzy love I still crave. She was a pistol for sure and she was my teddy bear.

The symptom control information we have in the hospice world is appropriate for those not on hospice. It was appropriate for her during the time of her chemo and radiation and it would have changed her life. It is appropriate for those seeking cure-directed treatment. It is appropriate for anyone who is living a very uncomfortable life as they deal with a life-threatening illness. Studies are showing this type of symptom management is even appropriate for those having shoulder, knee and back surgery and for those living with lung and heart disease who are far from hospice appropriateness.

My grandmother couldn’t listen to me. Over time, with more and more of this information entering the mainstream, and as more and more people are relieved from their distress, the message will spread pretty quickly that suffering is unacceptable.

I hope you can hear me.