Saturday, March 15, 2014

Hope in Hospice.

Let’s talk about the H word.


Six months ago, the word hospice to me meant that you are giving up and ready to die.  But now I am here to tell you that there is hope in hospice.

Michelle entered the care of the The Community Hospice only 4 days before her death.  I was blessed to be with Michelle during those last days and so I can attest to how invaluable their service was to her and the rest of my family.

I only have one regret in the experience and that is that we didn't seek out their help sooner.   If you have read Michelle's story, you know that she stopped chemotherapy treatments in June 2013 as her cancer did not respond to it.  She continued to have radiation treatment, but this was primarily to reduce the chronic pain she was experiencing.

Michelle and my family spent a lot of time in the hospital the last 4 months of her life.  It was a whirlwind of non-stop emergencies, one complication after another.   Her disease was progressing far faster than any of us imagined or realized at the time.

At this point, Michelle could have enrolled in hospice care.   But I can tell you, the word "hospice" to a cancer patient and their caregivers is terrifying.  The doctors did not talk about it, Michelle didn't want to say it and we didn't want to admit that her fight was coming to an end.  We all probably had it in the back of our minds but we certainly didn't discuss it.    In our world then, hospice meant that we were giving up hope and that she was ready to die and that was not acceptable for a 36 year old.  

While her disease was aggressive, it had only spread locally.  She did not have any disease in her liver, lungs or brain, common places for colon cancer to spread.  Besides the tumors in her abdomen, she was otherwise very healthy.  What she did struggle with was chronic nerve pain and persistent bowel obstructions.   What Michelle needed back in September was palliative care.

As described by the Community Hospice website, palliate care focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

I am not saying that palliative care would have changed the outcome but I do believe this service would have improved her journey.  It would have given her and her family the breathing room to really take a hard look at her disease progression and it would have improved her quality of life.   The palliative care service would have brought caring, compassionate nurses to her home.  They perhaps could have prevented or reduced the frequent emergency room visits that Michelle endured due to pain.   They could have taken care of the logistics of hospital beds, oxygen, prescriptions, coordinating doctor appointments and so on. It would have allowed Michelle and my family the time to focus on the important stuff and that is spending valuable time together.

What is the hope and the fighting for if you can not spend quality time with those you love?

What I realize now is that there is hope in hospice and it is a lesson we learned very late.  No one is ever prepared to take on a cancer diagnosis, often it is fly by the seat of your pants to make decisions and rearrange your whole life.  But I have hope that these lessons we learned can help others in a similar situation.   Perhaps someone reading this blog is in the same situation as Michelle was and will consider all the services that hospice offers without fear.  Perhaps this post will spark an important conversation that everyone is afraid to have.   Enrolling in these services is not about giving up.  It is asking for help and accepting help when it is most needed.

This is a blog post that has been on my mind for months.   For those on the Community Hospice mailing list, you may have been pleasantly surprised to open the donation request letter this week and see Michelle's beautiful face.  This letter was the spark I needed to share.    We are honored to have Michelle highlighted to demonstrate how important a hospice service is in a cancer patients life.

With much love,

No comments:

Post a Comment