Anyone chosen palliative care? What are the last months/weeks like?

@rfherald, I can understand you're wanting to be prepared. As you can imagine, my answer is going to be "it depends and everyone is different." Having said that there are some things that you and your family can be aware of and prepared for. You might find this article from Virtual Hospice helpful:
– Final weeks and days: What to expect https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Final+weeks+and+days_+What+to+expect.aspx

The article is not cancer specific but I found it useful to read when my dad was diagnosed with stage 4 colon cancer. It helped me to be prepared. My father-in-law had metastatic prostate cancer and again we were better prepared as to what to expect. He had home hospice and we set up a hospital bed on the main floor so he could have a clear view through the picture window to the lake – the view for which he built the house.

Have you already had a palliative care consult? Have you considered also looking into hospice options for when that time comes?

rf herald,

I am not a medical professional, but did want to ensure you have conferred with a center of excellence in your condition - and, not just a local medical team?

rfherald,

Now that I have made my usual plea for folks to seek out a cancer center of excellence ... my sister, age 65, after a long battle with pancreatic cancer which entailed debilitating chemo and radiation (her condition was already quite weak due to a back injury), was not eligible for Whipple surgery due to having presented with ascites. Her plan was for chemo, followed by radiation called neoadjuvant process.

The ascites required repeated paracenteses, and then these began to be required less frequently, I believe, as her liver function decreased - metastasis was occurring at this point to her liver and lungs. She was not in pain until the last month or so when, after she entered home hospice, I administered morphine per hospice training and authorization.

Since you want to know what the last weeks or months are like, I will share with you what I have seen in the people I have known that have died. Like Colleen Young said, it seems like each person is different but I sure would have appreciated honest information when my mother was dying.

I had a friend that voluntarily went in hospice at home. In her case, she just gradually ended up in a wheel chair and then was obviously very drugged up for the last few weeks until she died. Based upon what happened with my mother, I think the drugged up option is the way to go.

My mother got ascites and had a procedure at a hospital that released all kinds of infection into her system and that is what killed her. She was totally mentally sharp at all times until she died. She described that she was suffering a lot after the infections were released (I use the plural because cultures identified at least two types of bacteria and two types of fungi). I do not think that my mother was administered enough morphine to make her comfortable and we had no one there to help. She was conscious that she could no longer breathe and there was nothing we could do. If at all possible, I would try to avoid that set of circumstances. She was in hospice at home but the nurse left and we were on our own.

My grandfather elected to have hospice at home and he was given enough medicine that he appeared to be totally asleep and unconscious. I would think that would be more pleasant. He was not a cancer patient, so I don't know if that is different.

You asked about palliative care, though, and not hospice. My mother had been enrolled in palliative care up until the last 24 hours of her life. The palliative care nurse that came to the house was very helpful, much like a nurse in a doctor's office. In each case, whether it be the palliative nurse or the hospice nurse, they claim to do "everything." I am not sure what they consider everything, but we really would only see them for a few minutes and the rest was up to us. I did think the services provided through the palliative care system were helpful. They did provide other people that would stop in for a brief visit if you wished, like social workers for example.

My father died in a hospital. He was not feeling well and got admitted. I no longer remember why. He was able to visit and so forth and died during the night. I guess what I am getting at here is that the cancer patients I have known seem to all have been able to talk and visit and so forth right until the end of their lives. From what I have seen, which is very limited, I still do not know the best way to go. It seems to me, from what I have seen and also what I have listened to on Doctor Radio, that having enough medication at the very end of life is very important. If you start to have respiratory failure or are experiencing tremendous suffering, it seems to me that having enough medicine to be unconscious would be the best option. I would think you would need medical professionals to help you know when that is happening. In the three cancer patients I have been close to, I guess the part that surprised me was how much they could be engaged in life with such horrible cancer. My mom got palliative chemo and that gave us an additional eight months that were a real blessing. I have often wondered what I could have done to reduce the suffering in the last month of her life.

I have wondered if it is better to die in a hospital hospice unit so you have medical professionals there to be sure you are administered enough morphine (or whatever medicine you are administered). I have heard the doctors on doctor radio advise that some of the really bad things that have been described happened because the patient did not have enough medicine. I do not like home hospice because it seemed to put the burden on me/us of being the health care professional and I felt totally unequipped to do that. On the other hand, most people seem to want to die at home.

I am sorry to write such a rambling response. Some of this is still really painful for me to think about. I am sorry you are going through this. God bless you and I will pray for you.

No, I have not but I will follow-up on all of your recommendations. Thank you.

No, but I will track one down. Thank you for the advice.

Thank you for your story. What was the purpose of the infection injection?

My experience with home hospice was good - I was trained in administering morphine.

It is a lot of responsibility, but someone must be the 24/7 caregiver, and be competent to administer narcotics.

If I wrote infection injection, I apologize. My mother had an infected gallbladder caused by a back-up from a failed biliary stent. When they went to try and drain it, they accidentally released several types of infection into her system and they could not control it. That is what ended up killing her.

I'm sorry. That had to be a very sad ending. I can't imagine.