by KJ Page, RN-BC, LNHA

“Almost everyone dies.”  These were the first words spoken by the physician at the start of the family meeting. 

Working in long-term care, in skilled nursing facilities, let me start by admitting my distress at this statement.  In all fairness, this physician did not know me, or what I do; I immediately gave up hope.

I quietly countered with: “Wow, in California, there is no way out alive, everyone dies.” Not willing to take the lifeline I threw to her, she responded with: “Well, sooner or later they die.”

The meeting went downhill from there.  Rose (I changed her name to represent the flowers she hates but grew with a nearly religious fervor in past years) is 85, diabetic, and now is in end-stage renal disease. She had an advance directive we spent agonizing hours over at a time when she was not in a medical crisis. She was very clear about no dialysis. She made me promise her I would help her get her way when the time came.  Since she lives on the Right Coast and I live on the Left, her son who lives with her gets to be the Agent. I am the second call if he won’t respond or freaks out. She wrote that into the DPOA.

The reason I insisted on this meeting, having flown to the East Coast in a mad dash after getting the 5 am phone call: “Mom was rushed to the hospital with kidney failure. They want her on dialysis and she is saying no. We need you here. All the plans are changing.” 

The doctor informed us that she knew Rose well (having met her the day before in the Emergency Room)  and further informed us rather proudly that she had finally talked Rose into dialysis by focusing on how terrible it would be to die with no urine output because of her renal failure. How sad it would be to leave her husband and sons. Rose agreed not to leave them, so she was started on dialysis that same day. 

I was in shock. I managed to ask about the Advance Directive and all the many (rather good strong) reasons Rose had for not wanting dialysis. The doctor assured us that living a good life on dialysis is what she should have and what she wants and she has already torn up the old advance directive and given her a new form. This new MOLST (Medical Orders for Life Sustaining Treatment) was now in effect for full treatment. And yes, I did ask about the mortality of end-stage renal disease in an 85 year old diabetic and didn’t that impact the dialysis life expectancy of the ten good years she was talking about.  She shrugged and spoke to my father-in-law about how easy it will be to take her to and from dialysis three days a week, that age is not always the deciding factor.   

Even though I was in a different state in a different part of the country, it was a Magnet Hospital so I had expectations of at least basic care and service delivery.  “I want to see the Palliative Care physician.” Ok, so I was interrupting. “Oh,” she pointed to the blue embroidery on an old fashioned long white lab coat;  “I am the palliative doctor.”

At that point I had to leave the room. Rose was transferred to the dialysis unit of the hospital and from there to a dedicated dialysis SNF, where three rows of ten spa chairs are filled, two shifts, seven days a week in rotation from the residents of that SNF.  (Clearly in conflict of interest territory.)  Personally, I don’t care if Rose gets dialysis or not. I do care about having her get the care she wants and not something someone else decides is better for her, going against her strongly held beliefs.  She keeps asking me to promise I won’t let her sons or her husband talk her into staying on dialysis when she is ready to stop. 

This, to me, is a perfect example of HOW NOT TO honor someone’s wishes. So many things were wrong on so many levels I didn’t even know where to start. Talking with Rose, about how and why she changed her mind, she explained that the doctor did tell her how horrible it would be to die of blood poisoning which would happen if she didn’t get dialysis.  The doctor told her how painful a death it could be so she decided she had better try dialysis since she didn’t want to die in terrible pain or to be poisoned. The doctor pointed out that her husband and sons all wanted her to stay alive. Nothing I could say helped at that point. 

It is now three months later. Rose was discharged from the SNF in six days to home. Home care has been somewhat helpful, despite telling her that she can’t have both PT and OT services, regardless of the need, during the same week.  She is picked up by wheelchair van and taken to and from a neighborhood dialysis center from 4PM to 9 PM three days a week.   Rose has been to the hospital ER four times in those three months; three times for Clostridioides difficile (C. diff.) colitis and once for venous access issues. Short of asking her every day if she wishes to continue with dialysis, we have reached a general consensus of symptoms to watch for and if they occur she might change her mind and decide to stop the treatments. Usually, she agrees her life is ‘tolerable’ and ‘ok,’ which is actually high praise from a woman who raised eight sons alone in a small blue-collar New England town and is more than used to ‘suffering through’ life. 

This is a cautionary story of what not to do when someone comes to the hospital in a medical crisis. Certainly people can and do and many should change their mind about what they may or may not want for themselves. We need to be sure we are basing our conversations on fact and science, not pandering to fear and misperceptions. There is no reason in this century for anyone to die a horrible death, even if they refuse dialysis and have no urine output. Pain management and symptom management have improved well past the terrible scenario this misguided physician stressed to my mother-in-law. 

What happens next is as much a mystery as it ever is.  The family will navigate the next crisis hopefully without the unhelpful input from this palliative care physician. Rose created a list of symptoms, on her own, compiled from a Renal Disease website. She has posted those terrible horrible symptoms on the refrigerator door with her MOLST form – still full treatment, and a note that reminds her son that she wants to stop dialysis when she wants to stop dialysis. I can only hope for and dread that next phone call.