Doctor wants to stop treatment, patient doesn't want to give up

Perhaps you should get another opinion from a facility of excellence. If they have a recommendation to extend his life then that might be your choice. If they come back with the same recommendation then at least you will know the concerted opinions of the experts. Good luck to you and your Dad

@concernedadvocate, this is a very difficult position for all of you to be in. It sounds like your father might be hearing "we're giving up on you." But the doctor is trying to say "I don't want you to suffer."

@hbp's suggestion is a good one, if you are able to seek the opinion from another facility. I understand that your father may be too frail to move, but you might ask about a virtual review of his records.

Another option to consider might be to seek the services of an oncology social worker. See more in this article written by Mayo oncology social workers:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

An oncology social worker can be a liaison between the clinical team and the patient and their family and advocates. They can help bridge the communication gaps. I would also request a medical translator/interpreter. With these people on your team, you, your father and his physician may be able to come to a shared decision that respects your father's wishes and well being.

@concernedadvocate Welcome to Mayo Clinic Connect! You, obviously, are very concerned about your father and the treatment he is being given. I was a nurse on an oncology unit for about 11 years and we had many situations just like you are experiencing. We actually had an educational inservice on the situation, focusing on the law as it concerned the patient and doctor’s rights. The doctor doesn’t make his decision lightly. He asks his peers for advice, reads the patient chart over and over, and weighs all of this before making a decision.
You and your father can ask for further treatment, but you will only get it from a doctor who doesn’t agree with the no treatment decision. You can move your father to another hospital, if he can find another doctor willing to accept him and his wish for further treatment.
I know this is not what you wanted to hear, but this is the way it is today. I certainly agree with @colleenyoung about including an oncology social worker in the discussions. You might also include the hospital chaplain ( they are non-denominational) and excellent in talking to the patient and family.
What are your father’s wishes?

I would recommend meeting with a hospice doctor. Most hospitals have a doctor specializing in palliative care and hospice, or you can call whatever local hospice service there is. They can give you an alternative viewpoint, which you can listen to and accept or reject.

Many people think hospice is for the final few days. My mother was on hospice for years (like Jimmy Carter). The service and meds are so helpful that she went off hospice twice, then back on a few months later.

I know it's hard but to me, with experiences I have had, it sounds like you are dealing with a wise and caring doctor who wants to avoid further suffering. It is hard being in the position of advocacy and decisions. I've been there. I think a second or even third opinion will help you.

But, again, I hope you can include a good conversation with a hospice doctor. They give you a new toolbox for comfort and quality of life.

@concernedadvocate I have come back to your post several times, reading it and the responses you have been given here. I understand the feeling of "what if we try...?" We have been there with my Dad, my Mom, my Mother-in-law, and most recently my sister-in-law so I understand how it feels wrong to "give up."

I think Colleen's and Becky's suggestions that you bring the oncology social worker, a chaplain and a medical translator into the discussion are important, as much for you as for Dad. They can help both of you understand what is involved in the additional treatments you are reading about, what the effects might be, and what hospice might look like instead.

What you need to understand is why your Dad wants more treatment - with multiple mets from his lung cancer, limited or no tolerance for chemo, and the inability to walk, he is unlikely to return to his former life. So what would life look like going forward? Does he understand he is unlikely to "go home and be like before"? Does he want to go through more treatment if instead he will be wheelchair bound and dependent, even after tolerating more side effects from whatever treatments he might try? Is he doing this because he feels like family wants him to?

Our parents each chose at a certain point to forego more treatment and take palliative measures to be as comfortable as possible. In their last weeks/months they were each able to visit with family and friends, and my Dad even managed to take a trip to his much-loved winter home. Each passed peacefully on their own terms, surrounded by loved ones, after having the opportunity to say their good-byes.

My sister-in-law, on the other hand has chosen chemo and all of its side effects, which have rendered her so weak and sick that she has done nothing the past few months except manage her pain. Most of the time she is too ill to interact with her grandkids and great-grandkids, but she will not call in hospice because to her it means "giving up." Her quality of life is pretty poor, and very stressful for her loved ones.

So as you can see, it is important to figure out what is important - quality time or fighting to the last breath.

There are no easy answers. Every time I talk to my sister-in-law, I cry afterward, because she is fighting so hard to keep breathing that I don't think she is really living.

@concernedadvocate this is such a tough time. I found the no more treatment visit with my Dad's cancer the hardest of all. He did not argue about it, but followed recommendation to bring in hospice. I think he was tired of side effects and mentally felt there was no way out. He was comfortable and well cared for in his own home until death.
Your Dad's doctor has seen how chemo side effects can be the cause of a hastened death by weakening a frail body further. That is how he makes his recommendations. I would hope there is a doctor out there who would fulfill your father's wishes of more treatment, but if not, reconsider that their viewpoint may be correct for offering the longest life to enjoy, rather than suffer.
I have know people who said that their time spent on hospice was the absolute best of all medical care. If his disease is not curable at this point, then perhaps hospice or palliative care will give him comfort and acceptance, rather than the belief that he is giving up. Talking with a hospice social worker would be helpful. A second opinion from a referral type cancer center, even if virtual visit, would be helpful.
A Dr. Ed Creagan from Mayo who specialized in palliative care has a couple of good books to read. I love his book "How Not to be My Patient" with many suggestions for doing all that you can for your own health preservation. Explore Immune therapies like Beta Glucan for strengthening your own ability to fight cancer. Medicinal mushrooms are another complimentary therapy that can be used on your own. Another good book: "The Rebel's Apothecary" By J. Sansouci. I have used an immune therapy for 12 years after my initial cancer surgery and chemo/radiation. When traditional treatment stops or takes a break, doing these other therapies gives you the feeling that you are still fighting cancer, not just waiting for it to come back. Using something that doesn't hurt you with side effects, and might help you, can be a positive thing. My Mayo oncologist feels that these other things I have done have caused my cancer to behave abnormally with less aggressive behavior, and allowed me to respond better to my last immunotherapy drug. I feel that everything I am doing is helping to prolong my life, and attitude is so important. Perhaps this could help your Dad also.

He would still like treatment if anyone is willing to give it to him.

He is already receiving palliative care. We spoke with hospice, but from the sound of it, once people are on that service, they can't get anymore treatment and the hospice will take over. How would that even work, to be on and then off hospice?

"What you need to understand is why your Dad wants more treatment - with multiple mets from his lung cancer, limited or no tolerance for chemo, and the inability to walk, he is unlikely to return to his former life. So what would life look like going forward? Does he understand he is unlikely to "go home and be like before"? Does he want to go through more treatment if instead he will be wheelchair bound and dependent, even after tolerating more side effects from whatever treatments he might try? Is he doing this because he feels like family wants him to?"

He's at a 50-60 performance scale right now. He understands he's not getting back to 100, and he's come to terms with being wheelchair bound and dependent. He can't walk and he's somewhat weak, but he's still able to feed himself, wash himself, wipe, and everything else. His view is that he's willing to trade some pain and discomfort for more time.

Dear @concernedadvocate ,
So sorry to hear about your dad. For my dad we chose to go with the doctors recommendations. He was ok with it when the cost vs benefits of further tx were explained and he had a better overall perspective. The focus moved to the quality of life that he could still experience. His "comfort care" included medication for pain and medication to take the edge off any anxiety. It was hard to watch him deteriorate but there was reasonable consolation seeing him not in pain and not having to experience any more procedures that could prolong suffering.

I hope you and your dad can benefit from a care team/family meeting to help with a plan that's agreeable as Becky and Colleen have alluded to.

Prayers for your dad and family.
Ernie