Doctor will not approve any further treatments as he says it could have a fatal outcome for my dad. PC has spread to liver and PSAs are rising rapidly.
What can we expect moving forward? What are some ways this is likely to play out?
We are getting community resources together bc he is home. Any insights are welcome. To be clear, we are not looking for treatment ideas. That’s no longer an option. Am interested in what we can expect and how to navigate the final time we have with him. Thanks for understanding.
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I’m DEEP into palliative care ( kinda a cross between deep palliative and home hospice ) and have been for several years. If it were me, based on my own experience, I’d jump right onto the palliative care registry. They will fawn all over him, pester him to make sure he is happy and very comfortable, and if different treatments are available and warranted, you have a very powerful advocate in palliative care. I highly recommend it. Palliative care will seek to make both you and close family members comfortable as well. Nothing to “ face “ but “ make you smile care “. Lotsa perks come with palliative care too.
Just IMHO and from years of palliative care of my own.
Man, this has not been our experience of Palliative Care. We go to their office once a month and they ask Joe the same questions about pain, meds, etc., then listen to his lungs and heart and send us on our way. That office is the one that renews his oxy, so we continue to go…..
We get great help from pain management clinic! Joe has had multiple shots in his hips and back for pain. Going again next week to see what else they suggest cuz the pain is NOT being controlled by the shots and/or oxy. Maybe PSMA PET scan this week will explain what’s going on….And what might bring him relief.
You should contact your local Hospice society for advice and to learn about options. They are very caring and supportive people. They will have had lots of experience with patients who can't accept that they are nearing the end of life. They can offer you guidance in how best to approach your father. Best of luck.
highly recommend getting hospice involved. And taking advantage of all that they have to offer even if you don’t think he needs it at the moment. It is better to have the equipment on hand and not need it than it is to need it and not have it. I hope his remaining time is peaceful and pain free..
hi! My dad recently went through this same experience with significant mets to his liver and no treatment options left. He was referred to hospice mid December and was able to stay comfortably at home until he passed this week. Originally we were told he only had a few weeks left but we had a solid 3 months with him. He still maintained a great quality of life until a week before he passed. Hospice was amazing in guiding us through the process. If you live in an area with access to hospice supports I highly recommend contacting them as soon as possible. I think connecting with local caregiver support options is a good idea as it can be tough at times.
Palliative Care is very different depending on the provider, and where you are located.. At a hospital or clinic it generally is pain management only. From lots of experience with this, I suggest you interview to find a very good Hospice provider that is nonprofit (much better than for profit hospices that can also be not very compassionate) and have a consult for their range of services. Most offer excellent palliative services for patients like your father that will naturally evolve into more traditional hospice services when and as needed. Good providers also have caregiver and grief support for you and your family. Important to get him enrolled asap though. Best wishes for a good experience at a most difficult time.
I second Kaliber's rec to seek palliative care. At Kaiser in Northern California palliative care is separate from pain management. I find the palliative Care doctor to be very supportive of both my family and myself.
I highly recommend the book “Hope for the Best, Plan for the Rest” by Sammy Winemaker,MD. You probably won’t benefit from the early chapters, but I found the final chapters very helpful in dealing with my husband’s terminal condition. Dr Winemaker outlines what to expect and how to determine approximately where he fits on life’s timeline. The only part that I wasn’t prepared for was severe terminal agitation. It’s well worth having Hospice available for appropriate medications. My heart goes out to you.
many have found it to be 100% effective therapy for depression and are interested in a painless cancer-free eternity. What could be more relevant here?
suggest you book appt with a hospice group; they will come to you. They will advise you of all they offer. If your father is alert, involve him. He can decide what he wants them to do for him or not. Prayers for all at this difficult time. I’ve been there and hospice was wonderful!
If I may, I would like to suggest a series of posts made a few years ago by a fellow member as he gave us weekly updates of his experience after treatment stopped. His name was JimBarringer and his story was very moving and interesting as he described his final few weeks. Here is a link to one of his posts and most were titled “Hospice Journey”, followed by the date he was writing about.
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