"I don't want to be on dialysis, and I'm afraid of what will happen if I don't start dialysis. What should I do?"
Mr. K and his wife are an older couple with gentle mannerisms. Mrs. K has mild dementia. She frequently misplaces the debit card and her driver's license, so Mr. K keeps them for her. As a palliative care physician (Read Post 1: What Exactly Does a Palliative Care Specialist Do?), I see her and her husband after the nephrologist recommends she start dialysis for nausea, loss of appetite, and leg swelling symptoms caused by her end stage kidney failure.
"Medical Decision Making 101. Let's answer these five questions, make your medical decision, and don't feel regret.
Remind yourself as often as you need to that you made the best decision you could with all the information you had at the time.
No one can predict the future. Sometimes we make the best decision we can, and the outcome is still bad! 'I stopped at the 4 way stop sign and looked all ways before I made my right turn. I made the best decision I could at the time. Unfortunately, another driver didn't see their stop sign and rear ended me. Looking back, with all that I could see at the time, I would make that same decision to stop at the stop sign before making my right turn. Sometimes bad things happen anyway that is out of my control. I did the best I could at the time.'"
What are the five things a person should consider when trying to make the "right" healthcare decision?
1. Priorities, also known as goals of care (Read Post 7: I Want the Best Care Possible for ME - Part 1 of 2)
I want to stay with my husband for as long as possible. I want to be able to walk around my garden. I don't want my sons to worry about me.
2. Prognosis range (Read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis)
I went to the dialysis education class and talked to some people They said the average life expectancy is two to four years? That's shorter than I expected.
But the alternative is dying within weeks, maybe months, without dialysis.
3. Potential risks
It sounds like the usual - death, infection, low blood pressure, heart attack, stroke...that's if I start dialysis.
If I don't start dialysis, I was told fluid would build up in my legs and lungs, and I could become short of breath. I could become nauseated or confused from build up of waste. My potassium level could get so high that I could go into cardiac arrest and die.
To be honest, it sounds risky either way.
4. Potential burdens
If I say yes to dialysis, I won't be able to travel to Denver very much to see my sons. My husband would have to drive me to the dialysis center three times every week. I would be hooked up to a machine for three or four hours each time. I might feel too tired after dialysis to do anything else that day.
If I say no to dialysis, I would be given medications to keep me comfortable, to keep me from feeling short of breath or nauseated. My husband might have to see me like that and worry about me, and I would never want that. Knowing my husband is dealing with my being sick would be a big burden to me.
5. Potential benefit
I get a few more years with dialysis. Dialysis could potentially make me feel more comfortable by taking off this extra fluid and making me feel less nauseated.
I didn't get an exact number, but it sounds like I wouldn't have much time if I don't do dialysis. In fact, Dr. M mentioned hospice, so I'm going to guess "not long." I really don't see any benefit to not doing dialysis.
Based on Mrs. K's priorities, the potential benefits of dialysis outweigh the potential burdens and risks. She starts undergoing dialysis sessions on Mondays, Wednesdays, and Fridays.
Mr. K and Mrs. K develop a new routine. Mrs. K goes to dialysis on Mondays, Wednesdays, and Fridays, and spends the rest of those days in bed. This is Mr. K's "free time." "I like to walk on the treadmill when I'm home. I sometimes take my truck and go fishing if the weather's nice." On Tuesday, Thursday, and Saturday afternoons, Mrs. K has the energy to work in her garden. "I feel like myself on those days."
For two years, Mrs. K's dementia remains stable. Then she becomes lost in her garden. A few days later, she cries out in alarm when attempting to pull her shirt over her head. "She didn't know how to find the sleeves and pull her head through the neck hole, so she panicked."
Five months later, Mrs. K cannot figure out what to do with the shampoo in her hand. Mr. K helps her bathe twice weekly. He helps clean her and change her adult diapers because Mrs. K sometimes does not realize when she needs to use the bathroom.
"It is what it is," Mr. K shrugs, "I'm just focused on getting through the day with no major issues. That's a big win."
Another five months pass. Mrs. K no longer greets me when I see her. She is in bed most of each day, moaning. "She does that all day. She eats a few bites each morning and drinks a few sips each lunch. "
Mr. K tries to turn her in bed every couple hours, but it is hard to maintain this at night. On some mornings, he finds her in the same position he had left her the night before. "She's too weak to turn herself in bed." Mrs. K becomes frightened at the dialysis center, and Mr. K struggles to gently hold her in place while attempting to calm her with his words. "The anxiety is bad. Even with the anxiety medication Dr. M prescribed, the anxiety gets so bad sometimes, we can't finish her dialysis session."
"She's suffering. What do I do?"
We discuss the five things a person should consider when trying to make the right healthcare decision for them.
1. Priorities, also known as goals of care
Every day she is suffering. She doesn't understand dialysis, and it frightens her. I just want her to stop suffering.
2. Prognosis range (Read Post 9: How Terminal is Terminal?) Dr. M talked to me about this. He said we could make her comfortable with medications and stop dialysis. She would last about a week.
If we continued dialysis...it would be more weeks like this.
3. Potential risks
She will die either way.
4. Potential burdens
Continuing dialysis would mean more suffering. Me holding her down, and her not understanding why.
Stopping dialysis would mean no more suffering.
5. Potential benefits
I don't see the point in continuing dialysis. She has no quality of life.
Without dialysis, she wouldn't suffer anymore. I know this. It's just...we've been together fifty four years, and she's the love of my life.
Mr. K meets with two hospice agencies, to learn what they have to offer and in what ways they would help his wife if they were to let go of dialysis (read Post 2: Five Major Ways Palliative Care Differs from Hospice). He speaks with their sons, who fly down from Denver to see their mom. He takes his wife to dialysis another Monday, Wednesday, and Friday. That Friday, he says goodbye to his wife's usual dialysis nurse. When they arrive home, he feeds his wife a few sips of chicken soup, and he finishes two bowls for lunch. He picks up a name card and calls the number for the first hospice agency.
Mrs. K dies a few days later, calm and in bed with her husband and sons sitting next to her.
"We made the best possible decisions with the information we had at the time. We don't regret starting dialysis. It gave us two more good years. And we don't regret stopping dialysis. She's not suffering anymore."
(Read Post 59: Medical Decision Making 201 and Post 67: The Difference Between "Potential" and "Likely" for more suggestions on making big medical decisions.)