"That sounds exactly like what I would want. Hospice sounds like the way to go when it comes time."
"I don't ever want to be started on dialysis." I looked at the 80 year old woman perched in her wheelchair. She had just completed a short hospital stay for low blood count, also called anemia, where she had received a unit of blood and was sent back to her foster home. This was her first palliative care visit (read Post 1: What Exactly Does a Palliative Care Specialist Do?).
"Many people say this," I responded, "and they feel this way even after they are started on dialysis."
"But I mean it. I don't ever want to be started on dialysis. Never ever. I told my nephrologist," Ms. R adamantly shook her head.
"Have you and your nephrologist talked about what might happen to your body if your kidneys were to completely fail and you were not receiving dialysis?"
"No. What happens?"
"Well, if a person's kidneys were to completely fail and they were to not make urine, fluid may build up in their legs. They might have difficulty moving their legs because their legs are so heavy from fluid weight. They might get fluid build up in their lungs and become short of breath. Many people with kidney failure go to the emergency room for this."
"Oh, I didn't know this."
"Also, a type of waste called urea builds up, and the person might feel nauseated, lose their appetite, or become sleepy or confused. Dialysis might get started to remove this waste and improve these symptoms. Then again, sometimes people feel nauseated and fatigued from the dialysis process itself, so there may be trade-offs."
"This is what I do not want. Why would I want to go through a process that could make me feel worse?"
"To be honest, sometimes a person feels better, and sometimes a person feels worse."
Ms. R nodded without comment.
I continued, "Another major reason a person with complete kidney failure might end up in the emergency room is if the potassium level is at such a high level in the blood that it stops the electrical activity in the heart from working properly. They might end up in the emergency room for resuscitation attempts after their heart stops pumping (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ)."
"Oh. So people can die from kidney failure? I was told I have stage 4 to 5. Does that mean I have a terminal disease?"
"End stage kidney failure with certain lab values and symptoms is considered a terminal illness, whether someone dies suddenly from their heart not pumping due to the very high potassium level or they live for several months longer becoming weaker and more fatigued (read Post 9: How Terminal is Terminal?). Therefore, though many people say they would never want to start on dialysis, they usually agree to dialysis when they start experiencing uncomfortable symptoms or their nephrologist sees very concerning labwork."
Ms. R stared at me in stunned silence. Then she quietly exclaimed, "That sounds awful. It almost sounds like I have only bad choices. It's either suffer terrible symptoms or live my life hooked up to a machine for four hours every other day, practically half my waking hours. I just want to live out my life here, where it's comfortable, quiet, and peaceful. I want to crochet in my room. I want to listen to the gospel music that I like. I may not be able to do much anymore, but this is still something."
"Well, there are people who say, 'If I start getting any of those symptoms or feel uncomfortable from end stage kidney failure, give me medications to keep me comfortable! Give me medications for the nausea or the shortness of breath and keep me in my own home. I don't ever want to live a life where I'm hooked up to a machine every other day."
"Yes, that's it. That's what I would say. Can I have that?"
"Yes, you can. The people who help with this - keeping a person with complete kidney failure as comfortable as possible in their own home - would be hospice support. There might come a time when a person says, 'The next time I get sick, I don't want to call 911. I don't want to go to the hospital for the labs and the xrays and the noise. I want to remain at home and have the nurse and medications brought to me to keep me from suffering. I don't need to go through labs and xrays to find out what's going on. I already know I have kidney failure!' That would be the time to consider being evaluated for hospice support at home."
"That sounds exactly like what I would want. Hospice sounds like the way to go when it comes time. For now, I would be willing to go to the hospital for something quick and fixable like a blood transfusion for anemia. That did make me feel better. But I would not want to go to the hospital again and again for something that would not improve. And I definitely don't want to go to the hospital to START anything, like dialysis."
"Ms. R, thank you for sharing your wishes. It is so helpful to know what is most important to you so that I - and other healthcare providers - can give you the best possible medical recommendations (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). Have you talked to your medical power of attorneys about what you want [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)]?"
"No, no I haven't. I didn't even know that any of this could happen with kidney failure." "Would you like me to share what we discussed with your family, either now on the phone or in a future visit?"
Ms. R thought about this. "I think I would like to talk to my stepsons myself."
"That's fine. Let me know if you or your family have any questions. In the meantime, based on your goal of remaining as comfortable as possible at home, especially if there were a potential medical emergency due to end stage kidney failure in the future, I would recommend you learn more about what a hospice program could offer (read Post 2: Five Major Ways Palliative Care Differs from Hospice). Can I ask a hospice agency to contact you for a one time hospice education visit? Your family can join in as well."
"I would like that very much. Thank you for your time and thoughtfulness. I appreciate so much this information."