Monday, December 20, 2010

The First One

You don't go into hematology/oncology without knowing that at some point, one of your patients will die. You hope they won't, to be sure. However, statistics don't lie and no cancer center can completely beat the odds. I didn't know how long I would be at my new job before I lost my first patient. I wasn't sure if the death of a patient here would be different from the death of one of my former hospice patients.

Recently I lost my first patient, after almost 6 months working here. You might think that it was one of my brain tumor patients. That's who I thought the first loss would be. We're both wrong.

A teenager with sickle cell disease. It makes me so angry because this death could have been prevented. People with sickle cell can grow up to have healthy, productive lives. The operative word is CAN.

If you take your medications daily. If you keep your routine doctor appointments. If you take complications and side effects, from fevers to pain crises, seriously.

This teenager did not. There was a long history of non-compliance, some of which was the parent's fault, some of which could be explained by poverty, and some of which was completely this patient's choice. Even when struggling to breathe during what turned out to be the last few months of their life, this patient still did not take their hydroxyurea and other important medications. Yes, it was too late to reverse the lung damage and heart failure but their life could have been prolonged and they could have been so much more comfortable.

That's why I'm angry. This death should not have happened. If you have sickle cell and are reading this, I implore you to take your medications as prescribed and to keep in regular touch with your sickle cell provider. It can make a world of difference.

This teenager was so sweet, so polite, and deserved so much more. I'm glad that there was time for the patient to express their final wishes, for us to have a good palliative care discussion. They were able to go home and celebrate one last birthday with the family. They died in their mother's arms. As far as hospice goes, everything worked out beautifully.

If only it could have been prevented.

2 comments:

karen gerstenberger said...

I am so sorry for your loss, for the family's loss, and for this precious young person's passing. May he or she be at peace, be embraced in love and light, and be a teacher for others, through your words here. Each life matters.

Debra Stang said...

I am so sorry for the loss of your patient. I'm a hospice social worker and have worked with hundreds of patients who ultimately died...but I will never forget my first. He was a young AIDS patient who died shortly before the development of protease inhibitors. Like your client, he was a sweet young man, and losing him broke my heart. I wish you well as you heal from this loss.


Debra Stang
Alliant Professional Networking Specialist
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