My nephew has been diagnosed with Leptomeningeal carcinomatosis just a couple of days ago and it is aggressive!!! He has not been able to walk or urinate on his own in the last couple of days. I can see how fast he is deteriorating and it's painful. After speaking with his doctors, him, and the family we decided that it has been a long battle fighting Ewing's Sarcoma (which originated in the lung and spread to his spine) and that treatment will for the most part will not help since it is diffuse in the brain and the spine, and it may prolong his life for a little, but what is it to gain a couple of days or weeks if it will only be miserable? I feel that we have exhausted all options from IT chemo, radiation, and Methotrexate is just not going to help in his situation. There is no cure just treatment which based on previous usage has not really helped and in some cases made things worse. We are at the point where we must decide hospice or home. Here is the problem with that: At home there are four children between the ages of 10-20, and they are very close. I am not sure if having him pass away in the home will be good psychologically for them in the long run. And how do we deal with it if he wants to come home? He is very protective of his three younger sisters, as he is the oldest. And it may work against us because emotionally it can become unbearable for him and his sisters, who look up to him. Any suggestion will help. I thank you all in advance.
Maggie Butnariu
Reply # - March 22, 2013, 09:07 AM
Reply To: Hospice or Home?
Maggie,
I am very sorry to hear of your nephew's diagnosis of leptomeningeal carcinomatosis and the rate of its progression. As you can see from my signature below, my wife had the same diagnosis and suffered from a number of rapidly advancing neurological symptoms. She was in the palliative care unit (PCU) in an attempt to bring her pain and other symptoms under control, and then returned home. I tried as best I could to provide round-the-clock care for her there, but it was very difficult as she could not stand or walk without help. After a little over a week I realized that I could not provide the same level of care as the wonderful staff at palliative care (which was also the hospice unit at our hospital). We returned to PCU, where she was very well cared for, where she had easy access to her oncologist and other medical professionals and where it was easy for her friends to visit. Four days after her return to PCU she passed away. Almost a year and a half later I still have a very warm spot in my heart for the PCU staff, whom I have visited several times since my wife's passing.
It was only the two of us at our home, which meant that most of the time I was alone as I watched her suffer, which broke my heart to experience. In your nephew's case, I don't see that bringing him home will be good for anyone, including your nephew. At hospice he will receive the attentive care he needs, and family and friends will be able to visit but also go home after their visits rather than seeing him suffer day and night. (Although I should say that if there is someone particularly close to him that does not want to leave his room, the PCU staff was very good at making sure I was comfortable spending nights on the couch in my wife's room, daily providing me with fresh sheets and blankets). I can tell you that I have never regretted for an instant our decision to return to PCU for my wife's final days.
I will keep you and your family in my thoughts,
JimC
Forum moderator
Reply # - March 22, 2013, 10:01 AM
Reply To: Hospice or Home?
Hi Maggie:
I just wanted to pop-in and say that I am so very sorry that your nephew and the rest of your are going through this awful madness. These decisions are so unbearable, but unfortunately must be made. I recall Jim C.'s experience while he and Liz were going through it, and I recall feeling so grateful that both he and Liz had such a great support system at the PCU. It was comforting during a time of great distress. We (my Mom) decided to be at home - - and after a bumpy start and a changing of the initial hospice group (who seemed incredibly incompetent), everything went very smoothly. Of course, other than my children who would visit their grandmother, there were no young children in the equation.
I think one key point to consider here is to find out what your nephew wants? Where does he believe will be most comfortable for him? I know that these are very difficult topics to bring up and speak about - - particularly with the patient himself or herself (and especially because your nephew is so young). But, even if he slightly prefers one option over the other, my humble opinion is that it should be given credence. Based on what you've written, and the fact that he is very protective of his little sisters, my hunch is that he will consider them when deciding where he wants to be.
I'm so sorry these desicions are on the front burner for your family. I wish all of you the best. . .
Laya
Reply # - March 22, 2013, 10:27 AM
Reply To: Hospice or Home?
Hi Maggie,
I had posted on your other thread expressing my support for you and your family. This is a very difficult time for all of you and I am so sorry.
My husband declined so rapidly that we were encouraged to go to Hospice. His Dr's at the hospital all felt it would be very difficult to care for him at home. We had my mother with stroke related difficulties at home and our 3 children ages 11-26. My kids and I stayed w/him around the clock at Hospice and they were very good to us. We had so many friends and family come to visit that would have been much more difficult to accomodate at home(at one point his room was jammed so full we couldn't fit anymore people). Looking back in hindsight, even though my husband initially wanted to go home and I wrestled with that, I know(and believe my husband did also)how hard it would have been not only because he needed so much assistance but also because of the emotional toll it would have taken afterward.
This is not an easy decision so I wish you and your family all the best in what is decided upon...
Lisa
Reply # - March 23, 2013, 07:11 AM
Reply To: Hospice or Home?
I'm sorry to hear about what your nephew and now whole family are facing. I'll say that I am often a proponent of home-based hospice, but if there's a situation in which I think that might not be a great choice, it's when there are children at home, for which it could be a traumatic experience. Hospice teams often do a great job of smoothing over rough edges, but there is a lot that is unpredictable about the dying process, and even reducing suffering (for the patient and, by extension, everyone around them) may not eliminate it.
As others have said, I think that his preferences, those of the rest of the family, and the range of alternative options available are all important points to take into consideration here.
Good luck.
-Dr. West