Libby and I were introduced to the idea of hospice several years ago by several friends and later learned a bit more from the book Dying Well by Ira Byock. It seemed to both of us that hospice was a great idea. That toward the end of life to make sure the quality of the time was maximized, rather than trying to keep life as long as possible, without regard to the dignity of the patient or the quality of their time. This prospective was reenforced by reading the book Dying Well by Ira Byock.
A few weeks ago Libby switched to hospice when we learned that there were no reasonable treatments left for the brain. Unfortunately, hospice and insurance tends to be a bit legalistic. They don’t want you to do things like chemo, even if chemo might be the most effective way to manage symptoms and improve quality of life. There was some hope that chemo for the liver growth might be an effective way to reduce the pain Libby was feeling with minimal side effectives. We arranged for Libby to start the chemo treatment a day before she switch to hospice knowing that hospice would be OK with finishing a treatment that was already started.
This week we were to assess how much the chemo helped. If it helped, Libby was going to do one more round. Unfortunately doing another round of chemo would mean we would have to temporarily pull Libby from the hospice system because you aren’t allow to start treatments like chemo and still be considered a hospice patient (e.g. moving to hospice could be considered premature).
This week we got the results about the effectiveness of the most recent round of chemo for the liver. As far as we can tell, it was completely ineffective. The liver cancer activity level increased significantly during the chemo treatment. Thankfully, Libby has very minimal side effects from the chemo, so at least she didn’t have a significant drop of quality of life for an ineffective treatments. It is clear more than before that hospice is the right thing.
The hospice folks are great. Everyone we have met views their hospice work as a calling. They are focused on helping the patient (and family) make the most of the time they have left. The hospice folks have been very understanding about Libby’s energy levels. They have been quick to point out ways to save energy (like using a wheel chair and then providing one) so what little energy Libby does have can be invested in things that matter. A second area they have been really helpful is pain management. For the last three years Libby has been struggling with finding treatments that would relieve her pain while still allowing her to think and function. Thanks to some changes the hospice folks suggested, Libby is now reporting average pain levels of 2 rather than 4 (on the typical 1-10 scale) that she has had for more of the last three years. We are very thankful for this change because not only is the pain less, but she has more energy for activities.
Last weekend we took a quick trip to happy hollow (san jose zoo) which we hadn’t been to in years. We used a wheelchair so Libby wouldn’t get overly tired. We had a great time remembering Helen’s youth. Helen’s first comments were about how she remembered everything being so much bigger. We had a great time. In the coming weeks we are looking to do a lot more little things that are fun for our family, but not to taxing for Libby. Visits (coffee, meals, etc) with friends and family, short trips in the bay area, etc. Next weekend we will be enjoying some family visiting and a party with friends and the family in town.