My Dad and Hospice - 1250322

15 posts / 0 new
Last post
sherrys
My Dad and Hospice - 1250322

Dad has been steadily declining. He sleeps 18-20+ hours a day, is barely eating, is very unsteady on his feet, always complains of pain, headache, and nausea and is generally just existing. We have been in contact with hospice and he is ready to enroll but his oncologist will NOT sign off on the paperwork. He had us bring him in yesterdsy to evaluate him. They gave him IV fluids and IV nausea medication and sent us home with a different med for nausea and 10 mg oxycodone.

The palliative care/pain management person talked to dad and he indicated he wanted to stop chemo but he said, "I'm not a dr., I don't know if it's working or not". Well, his scans are "stable" and his bloodwork is "good". So we told the palliative care people we wanted hospice because regardless of what the scans say, my dad is NOT stable. They just called me to tell me that the dr. wants us to give him the new meds for 2 weeks then come to see him on the 29th.

I am so upset. Why is he denying him hospice care when we have requested it??? I know that his PCP will sign off on it, but I am worried that if dad does do good and wants to start chemo again, that we will have burned our bridges. I read on here what the dying process is, and it seems to me that my dad is there.

Does it sound like I'm pushing him into hospice, as his dr. has indicated? I just do not know what to do.

Thanks for listening. :(

catdander
Reply To: My Dad and Hospice

Oh my gosh Sherry how awful. I don't have any valid input except to say how sorry I am that the doctor is making these decisions for you. Perhaps a conversation among the doctors and palliative care people need to confer.

Let me ask a doctor to reply and let's see what they think.

Janine

dr. weiss
Reply To: My Dad and Hospice

Sherry,

I'm so sorry to hear your story. In reading it, I'm whincing. Quality of life is the most important goal of care to most cancer patients (duration of life certainly also matters) and hospice can be very contributory to this. I'm horrified and very sorry to hear that your father has not been given ready access to hospice.

The situation that you describe is certainly consistent with the dying process. Very few patients who are as week as you describe will spontaneously improve. Certainly, if there is some recognizable, nameable cause to the decline (such as, for example, a urinary tract infection) that you can treat and make better, some patients will improve, but in the absence of this, a focus purely on comfort is appropriate.

In my practice, I routinely put weak patients on hospice with the understanding that if they should get stronger, we can reconsider this. The decision to enter hospice is never written on stone tablets.

Your describe your father as uncomfortable. Good hospice can be a very powerful tool to making a person more comfortable. Ideally, a doctor who is experienced at supervising hospice and invested in doing so is an important part of this tool. I keep contact with my hospice patients and their hospice nurses. From a human perspective, this can be conforting to my patient, to their caregivers and to me (while the occasional oncologist may seem like a robot, most of us are very human and are deeply affected by our patients). Further, from a technical perspective, I hope that I can be contributory to making the right medication and care decisions to actually achieve comfort--the hospice lable itself doesn't make someone comfortable, but rather good decisions made by the hopsice team do.

I don't know you, your father, your oncologist or his PCP well enough to have legit insite as to how to manage these relationships. However, I wouldn't let the hope of your father's improving stop you from utilizing hospice (TBC)

dr. weiss
Reply To: My Dad and Hospice

(Cont) stop you from utlizing hospice now. I highly doubt that the oncologist would actually refuse to treat him should he improve. If this did happen, then you really would need to think about whether you might prefer a different oncologist anyway.

catdander
Reply To: My Dad and Hospice

I think that last sentence is a very appropriate consideration. And of course all the former are what I bet Sherry is thinking too.

sherrys
Reply To: My Dad and Hospice

Dr. Weiss, thank you so much for your caring and thoughtful reply. I am feeling like the worst daughter in the world right now, but I know in my heart of hearts it's the right thing to do. To be fair, we loved the oncologist Dad has up to this point (although I did switch to a different one in the same practice for myself because I felt our personalities meshed better). Your reply has validated for me everything that I was thinking was right. My dad's PCP has signed off on hospice, but I was worried about offending his oncologist by going around him. I think that it's time that I put the focus of my worries where it belongs, and that is on my father.

Thank you again, and thank you Janine for your kind words and help.

drramchandran
Reply To: My Dad and Hospice

Dear Sherry,

I am sorry to hear this has been such a difficult road. You have interpreted the medical signals quite correctly. Signs of decline include sleeping much of the day and loss of appetite. As a palliative care physician and a medical oncologist I often do use hospice for periods of time when symptom management is most important. If the people I care for do better, more treatment is always on the table.

You are advocating for your father and are being an incredible daughter.

I am glad you have a physician who was able to help you to make these decisions in your PCP.

With warmest regards,
Dr. Ramchandran

sherrys
Reply To: My Dad and Hospice

Dr. Ramchandran, thank you for your reassurance. I spoke with my dad again this evening and he 100% wants to stop the chemo "for now". He is quite ready to go on hospice care, even though we didn't quite use the word. I think my dad is an intelligent man and he completely understands what he's doing. They are coming tomorrow for us to sign the papers. He has literally slept 22 of the last 24 hours and has eaten next to nothing. He keeps asking for nausea and pain medication. He is still optomistic that hospice care will make him feel better and he can go back to the senior center to play pool and visit with his friends. I just keep telling him I will take him when he feels better. I don't know if that will ever happen, but I do feel ok about our decision. It is so hard to loose him, but it is harder to watch him suffer. We put dogs down when they are ill and are told that it's the humane thing to do. Yet, with my dad, his oncologist is recommending he suffer longer. (Not that I'm saying we should euthanize him, lol). It makes no sense to me.

As always, GRACE has been a source of comfort and excellent advice. Thank you so much or taking the time to respond to me.

certain spring
Reply To: My Dad and Hospice

Just wanted to send good thoughts and to agree with what everyone is saying - that you are doing the right thing in attending to your father's comfort and his express wishes. Doctors, like patients, sometimes find it hard to let go.

laya d.
Reply To: My Dad and Hospice

Oh Sherry. . .this is all so very hard. I'm so sorry about this. I hope that the hospice team comes through for your Dad and that he starts feeling better. Don't worry about having hurt the Onc.'s feelings. He or she will get over it. . .And you are absolutely correct in saying that your primary focus right now needs to be on your Dad and his comfort.

With an extremely heavy heart,
Laya

delialolly1
Reply To: My Dad and Hospice

Sherry I just think that you are one amazing individual.

Blessings to you.

Lilorne

sherrys
Reply To: My Dad and Hospice

Thank you all so much. You are making me feel so much better about signing the hospice papers.

The rapid decline in my dad is frightening to watch. In the last 2 days, he has started hallucinating, isn't eating and is still sleeping most of the time. He talked yesterday about cats keeping him up at nght and moving his oxygen hoses out of the way because "the ship has to sail". Obviously there was no ship, and we don't have a cat.

I would think with the way he is walking and talking, he has brain mets, I just didn't think it would happen so fast. The hospice team has been amazing for the 2 days we've had them. They have told me that they think he has about a month left Honestly, watching him declining so rapidly and reading about end of life, I don't think it will be that long.

As much as I hate to loose him, I pray everyday that the Lord will have mercy and take him quickly. He's a good man and has lived a good life. He deserves it.

Dr West
Reply To: My Dad and Hospice

Sherry,

I just wanted to say that I definitely doing all of the right things, and that we're thinking of you.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

marisa93
Reply To: My Dad and Hospice

Sherry,

I am so sorry to hear of your dad's decline. Thinking of you and your family.

Lisa

sherrys
Reply To: My Dad and Hospice

Thank you Dr. West and Lisa. Knowing I have the support of my virtual friends means a lot.