Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Thursday, April 26, 2012

Thoughts on Our Experience with Hospice


My experience with Julia and my interactions with other families dealing with a trisomy 18 diagnosis has changed the way I think and feel about hospice care, especially when babies are the patients involved. In pharmacy school, one of the classes I took was called Care of the Terminally Ill. Through the class I developed an understanding and considerable appreciation for the tenets of hospice care. Living wills and DNRs seemed so important for end of life care. I'm sure that is still true...but not with a newborn.

When we were discharged from the hospital when Julia was 2 days old, we enrolled in hospice care. Our doctors advised this as they anticipated that Julia only had a few days to live. To enroll in hospice care, we were required to sign a do not resuscitate (DNR) order. Yikes. We arrived home and that very afternoon were met by a nurse and a physician from the hospice agency. Neither had experience with trisomy 18 and were not trained in any kind of pediatrics. The first thing they gave us was a prescription for morphine to "keep Julia comfortable." This is a common practice in hospice care for patients of all ages, and while the purpose is not to hasten death, the tendency of morphine to depress or slow respirations can certainly contribute in vulnerable patients. They (hospice) then described one or two scenarios they thought would be the likely way Julia would pass away. They succeeded in frightening us, and we filled the morphine prescription that day. We watched every breath Julia took for the first 36-48 hours we were home. There was one scare the first night that made us wonder for a moment about using morphine, but we did not. Looking back, I think we were so focused on and frightened by the scenarios given to us that we were not able to use our good judgment and years of medical education to assess if morphine would have been appropriate. After all, Julia was not in pain or having difficulty breathing. She made some different sounds while she was breathing but then returned to normal. We decided to put the morphine away and we never considered it again.

Our experience with hospice over the subsequent weeks and months involved having a hospice nurse come to our house every other week to check on Julia. The nurse listened to Julia's heart, measured her pulse, and counted her respirations. She asked about Julia's eating but never brought a baby scale to check her weight. (We purchased one ourselves.) We went through three nurses in our 6 months on hospice. I cannot think of any ways in which we benefited from this.  Our needs with Julia were minimal, but that was all the more reason that hospice did not make sense for us.

When we talked about discontinuing hospice services, the agency cautioned us that if Julia passed away in our home without hospice care then we would be subjected to questioning and an investigation by the police.  If we were under hospice care, all we would do is contact hospice and the funeral home.  No paramedics, no police. It seemed to be another routine practice of hospice that was meant to comfort us but instead only frightened us. We decided that we wanted the paramedics to come if something happened.  We wanted her rushed to the hospital. We wanted her life saved if at all possible. We removed the DNR order from her records.

Other families of T18 babies I have spoken with who have discontinued hospice have felt similar to us. They report hospice nurses telling them at every visit that their babies were declining and probably would not last much longer. But here is the thing: they don't know that! They cannot know that! Not one of the hospice nurses thought Julia could make it to one year. Not one. It is very hard to trust hospice staff with a baby. Their normal patients are not babies. And they certainly have almost zero experience with babies living with trisomy 18. This is a huge quandry.  To obtain nursing care immediately after discharge from the hospital with a newborn, there is not really another route other than hospice.  The system -- medical and insurance --- is not set up that way. After a few months alternative care can be arranged, but that takes time and who knows how much time one will have?

I do know that not everyone in a similar situation to ours has a negative experience with hospice. However, when you want to give your baby every chance at life because they have shown that they can live and grow and learn in spite of their challenges, then hospice often just does not fit. We were much happier without hospice. Our regular doctors were much more responsive to us and helpful to us. We wanted to focus on her life. And that's what we did. We cancelled hospice and never regretted it.


Anonymous said...

Jenny, thank you for an excellent, reflective post. I have heard of some palliative care/hospice services that allow for active treatment for a baby with tri 13/18 while acknowledging the true risk that the child could pass away with little warning. On the other hand, many papers that have been published recently state that a child with disabilities such as exists with tri 13/18 should be considered a "dying child" on this basis alone. This is problematic.
Your comment on "suffering" is an important one. Good parents never want their child to suffer- it is something that we are most sensitive about. However, it is wrong for providers to scare parents with this. I know of a family whose baby with trisomy was born crying loudly and doing very well. He died 3 days later. His father told me that he had no idea how he had died because he didn't have apnea and his heart was not in failure- but what was important to him was "I know he didn't suffer." I wonder about the dosages of morphine prescribed and have heard they can be excessive. Nervous parents might fear that normal baby crying is an indication of suffering and actually cause their child's death by administering a respiratory-depressing dosage of morphine. How sad.

BR said...

Jenny, this is a very insightful blog post and its important that you wrote it. I'm so thankful to get to see behind the scenes of Julia's life.

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