Skip to main content

Honoring Wishes: A Story by Nancy Lundebjerg

Have you ever read something that made you very sad? I did at the end of last week. It was an earlier post on this blog – Being Accused of Murder – that Dan Matlock had written. It’s frustrating, as I know all too well, this system of ours when it comes to letting – or not letting -- someone die.

The story below is the tale of a death when there isn’t a champion like Dan who is inside an institution and who stands up to speak for a patient. It’s the tail end of a story that began when a family caregiver was rescued from an endless round of diagnostic appointments by a geriatrician who said “here’s what we’re going to do” and laid out a practical course of action that covered the medical and social needs of the patient in question. It’s a tale of a death in a nursing home where hospice beds were very new and the culture change had been slow to follow. It’s been over a decade now and the story still makes me mad. It’s the story of my aunt, the story of how she died.

I wanted to share this story from my personal blog because I don’t want clinicians to ever despair at being that clinician who stands up for his or her patient at the end of life. Honoring someone’s wishes about how they want to die is the most important thing we can do for each other. I know, I’ve been there. I’m the family caregiver in this story.

So, thank you Dan for honoring your patient's wishes. I hope someone does that for me when it’s my turn to go.
I well remember those last days of my aunt's life. Her court appointed guardian, armed with all the health care proxies and orders that I needed, it was still a struggle to let her go. Sheila wasn't going out with her boots on -- no sirree, she was in the last throes of a full-blown dementia that had started out with self-reports of little people living in her ceiling. A warrior woman in a man's world -- her life is a story for another day.

When I tell about how she died, I will often say that I fought on multiple fronts so that we could let her go. It was the ending battle of a war that began when I first started to pay her bills. Sitting in her apartment, sorting paper, and gamely trying to carry on a normal conversation about those little people living in the ceiling.

 It was my friend Lisa (a young internist/psychiatrist on the cusp of completing her fellowship) who made the last argument that freed her -- who took up my fight, my burden, and bore it for me on those last few steps. I had arrived on her doorstep -- armed with all our favorite edible goodies and a story to tell. A story of a visit to a nursing home, an IV fluid having been started by the doctor on call, and a nurse that was crying about her baby. Her baby -- my aunt -- a woman who would have likely chosen to die much earlier in this journey if it had been left to her. The crying nurse who only meant the best. Who had called the doctor on call to ask that IV hydration be ordered. Made the call despite a clear notation on the chart -- no artificial nutrition or hydration. None. Nothing. Nada.

Yet, there was that IV, there was that crying nurse, and there was I -- unable to cause pain to someone in so much distress, with no strength to pull the plug -- for what seemed like the umpteenth time in a battle that had gone on far too long. Drained and spent by the last few weeks -- weeks of parsing out a palliative surgery (the surgeon’s and my preference) rather than a restorative surgery with a doctor who wanted to then go on to restorative surgery (her attending physician). Weeks that included learning that the nursing home DNR would not cover the ambulance or the hospital -- one needed one executed for each setting of care. That's three doctors' signatures, three times of saying, these are her wishes, she would want to die. Weeks that included a family meeting around the meaning of artificial nutrition -- how would my Aunt define it and what would she want? A family meeting where for the first time ever in all the years that my aunt resided there -- they wheeled her in to attend it. To preside in her diminished state over my decision on her behalf. A silent witness to my voicing that enough was enough.

"I just couldn't," I said that night after I told my sad tale of woe about the feelings of a nurse as they intersected with what I knew to be right. Feelings that so overpowered me with the rawness of the emotion that I couldn't pull that plug yet again. Looking back, I am in awe at the love that nurse had for her baby, my aunt. At the time, I dismissed it but it was true -- that was her baby and I was taking her away. Forever.

"You have to," Lisa said -- "if that IV runs all night, she could live another week." How stark, how cold those words must sound but they brought me comfort because I knew that -- even without the favorite foods - the next words out of her mouth would be: "I will call and take care of this." And, she did.

She called, she got the doctor on call and the IV was removed. Just like that. And, a couple of days later, my aunt exited this world. It was fitting that she would exit on a Shrove Tuesday -- this gregarious woman who built a share house on Fire Island and filled it with laughter and good times. As I remarked to my Mom -- she left at the height of the party before the penance of lent and that is how she would have wanted it.

by: Nancy Lundebjerg


Amy Berman said…
Dear Nancy,
I know how important it was to support the wishes of your aunt. I felt that same caring from you when I was first diagnosed with cancer. You cheerfully offered to take me to appointments if I ever wanted help. You have the most kind heart, my friend. I find it comforting to know that your friend was there to support you and your aunt when needed. End of life stories are so rarely straightforward. It is common to see members of the healthcare team having divergent views. The best we can hope for is to draw on our supports as needed. In life-- as in death -- it takes a village. Much love, Amy Berman
Anonymous said…
Hi Nancy,

I read your posting on GeriPal about the end-of-life challenges you faced with your aunt. I had some similar experiences advocating for my Mom when she died three months ago. As in your experience, I had great assistance from her geriatrician PCP in navigating the hospital culture that seemed intent on invasive (painful) or other (unnecessary) procedures that would not have made a difference the inevitable outcome of her illness. However, everything changed once her PCP was able to convince her attendings to engage the palliative care team. Once we were supported in her (and our) wishes, she (and we) were able to let go. Her passing became one filled with kindness and compassion that allowed us simply to be present with her.
Dan Matlock said…

Wow, what a story. Thank you for sharing.

I certainly didn't mean to make anyone else sad with my sad story. Rather, I think your story and my story highlight how counter-culture this work can be.

I think there is a big push in palliative care to put a rosy image on things and not use the words "death." But I think part of what Nate Goldstein's study demonstrated was that these accusations are common. While I may need thicker skin, I was completely unprepared for it. We need to make sure that people who care for patients at the end of their lives are better prepared for swimming with the sharks.
Nancy Lundebjerg said…
My dear Amy, you know that I have watched your journey and your strength in that journey with admiration. And, I am still here if you need someone to help with getting to those pesky appointments (although I am not sure I was cheerful -- you must be thinking of someone else!). right back at you with the love, Nancy

Thanks Dan. We have a culture that does not use the words like death (and all its derivatives) easily. I have had to train myself to say "died" instead of passed away when I talk about my father, my aunt, my friends who have died. Lisa, although not a geriatrician or a palliative medicine doc, would be someone you would have liked to meet. She had focused her research in medical school and then residency on how physicians experience their "first death". It was fascinating stuff (she died before publishing) and I can well remember an internal medicine rounds where she brought clinicians who were among the most hardened to tears. Her undergraduate work as in cultural anthropology and she had a very good way of telling a story. I miss her. She had trained with the doctor on call and somewhere I have the two message apology he left on my answering machine after her call (but no answering machine to play it on).

I could see why palliative medicine would want to move away from the word death as the defining aspect of the field but am hoping that it is not also, in an unintended outcome, moving away from using words like death and dying and towards those gentler ways we have of talking about death -- passing, departed, gone.

As for the sadness, I am sad but also irritated that some ten years after my aunt died we are still hearing that kind of accusation. I like your analogy of swimming with the sharks -- I'm gonna put you down as a potential member of my team when the time comes! Your skin will be ready by then.

And "anonymous", I am sorry that you went through that with your mom but so glad that someone from our rank of geriatricians was able to help. We need more of those.


Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

Survival from severe sepsis: The infection is cured but all is not well

Severe sepsis is a syndrome marked by a severe infection that results in the failure of at least one major organ system: For example, pneumonia complicated by kidney failure. It is the most common non-cardiac cause of critical illness and is associated with a high mortality rate.

But what happens to those who survive their hospitalization for severe sepsis? An important study published in JAMA from Iwashyna and colleagues provides answers and tells us all is not well. When the patient leaves the hospital, the infection may be cured, but the patient and family will need to contend with a host of major new functional and cognitive deficits.

Iwashyna examined disability and cognitive outcomes among 516 survivors of severe sepsis. These subjects were Medicare enrollees who were participants in the Health and Retirement Study. The average age of patients was 77 years.

When interviewed after discharge, most survivors were left with major new deficits in their ability to live independently. …