That is how you feel when a good friend is dealing with her own palliative care family situation from afar. Even the best palliative care clinician can get trapped in the Western health merry-go-round and subsequent family sink hole.
Several months ago, Sam had been dealing with a cough, weakness and pneumonia and had been prescribed a variety of steroids, antibiotics and antifungals. He’d been receiving care at a very prominent healthcare facility. They would have surely picked up on a cancer after their thorough workup and after being seen by well-established and credentialed pulmonologists, right? Except that didn’t happen.
Sam now diagnosed with adenocarcinoma; pathology proven after a long overdue bronchoscopy, is now on 4 liters of oxygen, needs assistance to get out of bed, is unsteady even with a walker, is barely eating, has lost 20 pounds, and is now showing signs of confusion and delirium. This functional decline has been sudden in the eyes of the family and now the current talks center around awaiting molecular testing and full staging (with brain and PET scans he can barely make it to) followed by oncology appointments to discuss if he is a candidate for anything that might improve his quality of life or quantity of time.
The only problem is that Sam says he is a “stay at home kind of guy” and he and his wife, Millie, had always talked about “not suffering” and not being a burden. Things are going faster than expected and my friend, their daughter and an exceptional palliative care provider, does what has been ingrained in her. She has served to elicit so many goals in others and has protected so many from undue harm that she knows deep in her soul that it is time to do the same for her family. She calls hospice. They need support. They need information. They need help – this can’t wait.
Oh, but now the guilt sets in. The second guessing. All the “what ifs”. She would be so surprised if he didn’t have metastatic disease but can’t prove it. How do you justify your decisions? Your father wants peace. He wants to be at home. He doesn’t want to suffer. Your mother loves him dearly and is suffering just seeing him dwindle. Your family is mostly supportive but of course there are those who are skeptical of your actions. More family is due to come in to town, including other physician family. You are well known in your community. You decide to get advice (aka reassurance) from your physician colleagues back home.
You get a flurry of emails; bundles of initials describing “miracle” treatments and possible offerings available now from the oncology Gods…TKI’s, PD1’s, nibs and nabs. You second guess your decision. What if he could hold on? What if he does have just the right formula of gene mutation (even though he used to be a heavy smoker for years), what if he can just to make it to that oncology appointment (in two more weeks S/P two scans) and get one of those “miracle” concoctions?
“Am I doing the right thing?” she texts.
We spend hours going back and forth. Listening to the story, the heartache, the doubting of herself and her decisions. I feel her angst. It is agony. I remind her that she is THERE and the people giving medical advice are NOT THERE. They are not seeing what she sees. They don’t know him like she does. They don’t have her perspective. I remind her that she has good instincts. She is an amazing clinician. She can see and feel in her heart that her dad is dying right in front of her. She only wants to protect him; protect him physically and as well as his spirit. BUT what about those scans? What if he could get better? Did I jump the gun? And then hearing the remarks “You’re sending him to his grave” from certain family. More what ifs, more angst. Family can be so cruel.
“When in doubt, go back to the goals”
I text. You know what he wants. You know what your mom wants for him. It is so hard. I wish I was there. I can tell you are feeling all alone. You know what to do. I am here for you.
It’s going to be watch and wait and compromise and self-preservation. You may have to try to take him to the scans so you have the objective evidence you need for the fam. You may have to show them that he can’t make it out of the house to even get them. His body will tell you what do to. It has already. I am here for you. You know what to do.
Even if you go for the scans, you can do hospice right away thereafter. Even if you do hospice, you know you can come out and go see oncology if you can get him there in two weeks. If he is still with us. You know what to do. I am here for you.
Every few hours she texts with updates. I wait longingly for them. I hope they still come and that I didn’t say something wrong in the last text I sent that may have offended her and make things worse for her. More texts come and I am relieved to hear from her as I try to continue to empathize. It’s hard to just wait and only be able to give reassurance; to do palliative care from afar.
I hope for the best for Sam. I hope he dies soon and is in peace. I feel bad for thinking that. Instead, I quickly try to erase that thought and replace it with a happier reminiscing. I start to remember him; the few times we met as our families got together. The humor, how gregarious he was, his wisdom, his sense of confidence and reassurance. “Always better to play tennis or golf instead of football you know. You’ll have that lifelong” he said to my teen.
This brings a smile to my face and I share that with my friend. She sends a happy face emoji. I guess it’s those little things right now.
Harri Brackett, CNS, is the Lead Advance Practice Nurse for the UCHealth palliative care team. She is a frequent author of the MSPC blog. Join the interdisciplinary palliative care community by subscribing at cupallcare.org