This week’s Lancet includes an article titled “The Death of Ivan Ilyich and pain relief at the end of life” authored by Guy Micco and GeriPal’s very own Alex Smith and Patrice Villars (it can be viewed for free if you register). This is a thought provoking article focused on the question of whether there is overuse of pharmaceuticals to treat various forms of suffering in hospice and palliative medicine. It also serves as a nice follow-up to Patrice’s post on the geriatric care of the hospice patient.
The authors argue that a good death, as seen through their interpretation of The Death of Ivan Ilyich, may include physical and existential suffering. Tolstoy’s character finds redemption in his suffering; he remains conscious through the agony of a prolonged and painful death and ends up with a greater understanding of life. The authors further argue that such a moment of clarity may no longer occur if we rely on practices that promote complete freedom from suffering through the over use of pharmaceuticals:
“What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?”
My immediate thoughts after reading this paragraph turned to the increasing use of symptom scores to assess quality in hospice and palliative medicine (just this week I finished reading one bereavement survey where the benchmark was NEVER having pain). By setting a one-size-fits-all benchmark of quality on complete pain relief we may be going against the very foundation of palliative care – respecting patients' and families' values and preferences regarding end-of-life care. Some patients may value lucidity over freedom from physical discomfort; recognizing this would be a true measure of quality in hospice and palliative care.
What do you think? Do we, as a hospice and palliative care community, have an over reliance on the pharmaceutical relief of suffering, whether it be from pain, anxiety, or “agitation”? Is Tolstoy’s idea of a good death “redemptive” for some leading to “self-understanding or spiritual awakening”? Did the authors misread Tolstoy (was his death even redemptive?)
20 comments:
This gets right to the heart of some of the taboos and challenges of palliative care. Very interesting and thought provoking!
If a patient makes an informed decision to suffer to their death - fine.
Let me put this on the WWW right now. When I die, and someone out there is the palliative care physician taking care of me - give me all the pain killers and sedatives available unless some burning bush teaches you to speak in tounges and tells you not to. Don't ever say "perhaps Dan needs this pain to complete his experience." - seriously, a real burning bush, not a dream.
Great article and great blog.
Dear Dan Matlock: I would like to thank you for your request to be at said future event, however I regret to inform you that due to scheduling conflict I am unable to attend. Let me inform you that if your goals for pain management change at the aforementioned future event the following can stand in for me:
1) a potato chip with a likeness to a certain religious figure,
2) Jeb Bush,
3) Dora the Explorer.
Please let me know if any of these will work for you.
Thank you,
The Burning Bush
This is very timely for me. I recently had a 60 yo pt in my in-pt hospice unit dying from metastatic cancer. When awake she often cried because she had only learned of her disease a few months ago and was struggling to deal with the existential aspects of it. She told me she didn't want to be over-medicated for pain and that she wanted to be awake. However, she became very delirious and agitated and so the staff ended up mediating her. Occasionally she would awaken and cry and the staff took that to mean she was in physical pain and gave her morphine. She never really woke up in the last days of her life.
I know she was likely physically comfortable during that time but am not sure we did her any favors on the existential front. It is hard to know what the right thing to do is.
My friend Avril Sawyer, from Vancouver, BC asked me to post the following:
I don't know how to blog so will put my comment here. I really agree with you over-medication of the elderly. My mother had a heart attack when she was 85 and was given enough medication to kill a horse. Amazingly she survived and went into a home at 88. She was only 95 pounds. The geriatrician there recognized the problem and slowly weaned her... Read More off almost eveything - in her last two years of life she gained back the 20 pounds she had lost and her quality of life definitely improved. Many doctors just don't understand that someone who weighs 200 pounds will need more medication than someone who is 100, and they give out the same dosage to all.
Fascinating and brave article. So much medicating of patients in hospitals is done to treat the nurses and doctors - in many instances medications are used as chemical restraints. We may say we are treating the patient's pain or discomfort when we see the patient crying out or trying to pull out lines and tubes, but it also makes our jobs easier to get patients to sleep and not cause a disturbance. It's not always clear whether we're doing what's best for the patient or doing what's best for everyone else (hospital staff, family members, etc).
Along those same lines, it might not be a terrible thing to treat patients for the benefit of their family members, who must live with the memory of their loved one's death. If Ivan Ilyich's wife and children had the choice of seeing him die screaming (but coming to terms with his own life) vs. quietly sleeping, which would they choose?
Thank you for these comments! Dan, I appreciate the novel use of GeriPal for advance care planning. Avril, appreciate your comments and hope that you'll read Patrice's post on GeriPal about this issue.
NP Marian, thank you for sharing the case. You and LB have outlined some of the complexities of this issue: 1)how far does our obligation to respect a patient's preference extend in the face of treatable forms of suffering? and 2) In hospice the unit of care is the patient AND the family; as patient's lose capacity, how do we manage disagreement between patients previously stated wishes and those of the family?
Improved communication will help: "In some cases people become confused at the end of life, and in some cases for the safety of the patient and others, we give them calming medications." Or, "Your loved one expressed a strong desire to be as awake as possible, even in the face of physical pain. How can I respect his wish to be awake while balancing your concerns about his physical suffering?"
No easy answers...
Both before and since we sent this article to The Lancet, I've thought long and hard about the conundrum we posed. I don't even know what I am going to want when the time comes; though I think I know what I want now that the time hasn't come (symptom relief up the wazoo, like Dan Matlock!) How much less can I know what someone I am caring for wants as their life is ending? As NP Marion wrote, it's hard to know what the right thing to do is... but that's exactly the point (I think) of the article in question. It's hard, meaning not (necessarily) simply answering every groan or gurgle with a mind-altering drug. Treating a dying person's "total pain" means much more. No formula is available; no conversion chart; as Alex said, no easy answers.
I think the point of the article is to point out the dilemma, not to solve it. I think -like many things in life - that living the dilemma is the only way thru it. it can not be solved. The modern urge to chose one side of the dilemma and hold it as the truth is part of problem. And in our society the one side that gets chosen is always the biological medical side. See the book Medical Nemises for a long, polemic statement of the argument.
I certainly don't mean to minimize the importance of considering existential suffering with my previous comment. I simply fear someone imposing their existential values upon me - particularly in this country. I guess this is the value of advance directives.
That said, I have been reading a lot of Dora the explorer to my daughter lately and she can fix anything. Dora would be a great palliative care physician and I would trust her judgement. I suspect she has something in "backpack" to relieve all suffering unless that nasty Swiper the fox has already stolen it. Swiper no swiping!
I was inspired by the Lancet article to reread The Death of Ivan Ilyich and was struck by a number of things.
One, modern medicine. Doctors couldn’t agree on a diagnosis for this patient. Was it a floating kidney or something with the vermiform appendix? Today, medical science would be able to identify the problem, perform surgery if necessary, and extend the life of this patient considerably, I’m sure.
Two, before medicine had extensive diagnostic testing, doctors instinctively made more use of their senses. Doctors in the story comment on the change in appearance of the patient’s face over time, especially changes in the quality of the eyes.
Third, stress and modern times. Ivan Ilyich couldn’t stand his wife. His home life was frustrating and stressful. Whether or not this accounted for his disease, we recognize today that reducing stress and the antagonisms of our lives contribute to healing.
Fourth, the importance of honesty. One of the things that bothered Ivan Ilyich so much was that his family and friends maintained that he was merely sick and that he would eventually get better. They nagged him about taking his medicine on schedule, avoiding prohibited foods, and going to bed early. He knew he was dying and he was surrounded by people who weren’t honest enough to share this with him. His one comfort was a simple young servant who wasn’t afraid to acknowledge the truth. Unfortunately this is still a problem for some patients today.
Finally, I don’t feel I completely understand the transformative moment of the story, when Ivan Ilyich accepts his death. He believed he had been doing all the right things by living a conventional life – the wife, the children, his position as a judge. How could this painful death be happening to him?
Since Tolstoy’s story is a work of art, it’s open to interpretation. The meaning for me is that, in the transforming moment, Ivan Ilyich saw through the false promise of “keeping up appearances.” Adhering to society’s expectations does not guarantee a good life or a good death. When he let go of this – which is what his painful suffering allowed him to do -- he was able to die in peace.
I’m reminded of the letter that the doctor writes (and doesn’t send) to his son near the end of Right of Thirst, by doctor/novelist Frank Huyler. “I spent too many years chasing something I couldn’t even name, for reasons that I didn’t understand. But in the end none of us are as complicated as we’d like to think. … I spent most of my adult life trying to prove that … I was significant in some larger way. What I didn’t realize is that no one cared but me. … Please remember that the world is indifferent not only to our fates, but also to the work we do. That matters only to us.”
Jan, thank you for your thoughts on Ivan Ilych, and for the quote from Huyler. I think you nailed the meaning of the book's end. In plain English, Ivan Ilych realizes his life has been a sham, that he's been a jerk to his family, and what he thought was important (upward mobility in high society) was really worth nothing in the end. He has a moment of redemption at the very end of his life. The question you raise, that I'll put out there, is did his redemptive moment come through his experience of suffering, or in spite of it? I think you're right that it was tied to his experience of suffering, but the story is open to interpretation...
I like your blog by the way! I've added The Health Culture to our "favorite blogs" list.
I know this thread is a little old, but it just occurred to me that there is a beautiful adaptation of the short story by Akira Kurosawa called "Ikiru" (which means "To Live") and it's about a man who believes he's dying of terminal cancer though the MDs won't tell him, and how he changes his life and leaves a lasting mark on his community. It might seem a little slow to some, but I found it heart-wrenching. It gets 100% on the Rotten Tomatoes website , with over 30 reviews.
I’ve found the Lancet article, and the discussion here, very thought provoking. It’s a brave idea to put out there -- that it might be beneficial to allow patients to experience their pain and suffering as part of the ultimate meaning of life and death.
I believe that all medical practitioners bring their human compassion and empathy to their patients. But physicians have to go against the exclusively scientific assumptions of biomedicine -- in which they have been so extensively trained -- to do this. The end of life, and pain and suffering at any point during life, call out for meaning. But meaning is not the central focus or task of biomedicine.
For the patient, and the patient’s family, the physician is an important witness to their suffering. So it’s only natural that they should reach out to the physician for a meaningful interpretation of what’s at stake in their suffering.
One thing I noticed in Jane Brody’s Guide to the Great Beyond (she’s a New York Times health columnist and the book is about preparing for death) is her animosity towards doctors who “abandon” their patients when there’s nothing more they can do medically. It seems a good friend of hers had this experience and it made a deep impression on her. I would guess that a willingness to relate to patients who are going to die under your care is part of a medical student’s decision about what type of medicine they’re willing to practice.
I have more thoughts, but I’m still in the process of collecting them. Thank you, Alex, for the link.
I immediately saw a parallel between this issue and the issue of pain relief for labor and birth. One major difference, of course, is that when it's all over, the new mom can reflect on her experience; the same cannot be said about the dying person (as far as I know anyway...) But too often I have heard others talking about the amount of noise a birthing woman is making, that sounds like an expression of pain, and felt some not so subtle pressure to "do something for her."
Until I read this post I hadn't considered the possibility of declining meds should I be in for a
long drawn-out and painful dying process. Now it's something to consider, just as I would ask any pregnant woman to carefully assess the options for pain relief in labor and not make a knee-jerk decision to accept medication.
We midwives have a saying: women birth as they live. Perhaps this applies to dying as well.
I found this article on another perspective of pain medication thought-provoking. I do agree that suffering has many dimensions and is not limited to the physical. However, I firmly believe that many physicians and nurses do not take adequate time to complete an appropriate pain assessment and one that should include both pharmacologic and non-pharmacologic interventions. It is a sad pathetic commentary when 50% of patients die with moderate to severe pain. What kind of a society have we evolved into? Each situation is unique to the patient and family but thank goodness we have pain medications. My mother recently died and she had to have massive doses of morphine during her final 24 hrs. I was glad I was there at her bedside along with the hospice and nursing home staff to ensure she was not having pain. Until we have appropriate end of life education including effective pain management programs in our medical and nursing programs, our patients will continue to suffer.
Gloria Lewis, MSN, MHA, RN, CCM
Palliative Care Nurse
Kaiser Antioch Medical Center
Having sat for many days & nights around the clock
with both dying parents (stroke/heart & lung cancer),
I feel STRONGLY that it is not up to US to
decide that the dying should endure OUR concept
of THEIR existential experience. After the stroke, my
mother's head pain was so excruciating that I
asked for whatever was strongest to help relieve
her pain. The risks of morphine were explained to
me & I explained to my mother its potential to stop
her breathing. Not a big whiner in general, I knew
she meant the pain was unbearable. She chose the
morphine & died 6 days later. There was NO WAY I
would have preferred her to suffer to earn some sort
of end-of-life Brownie badge.
If the dying can't answer, another thing to consider is
how did S/HE choose to handle physical pain during
life? For example, I had wisdom teeth extracted without
meds during the procedure and had a homebirth. Those
aren't common choices. Deciding the dying should suffer
for their ____ (what?) is like my deciding you should
rely on meditation for your dental work or giving birth.
Not my right, is it? I won't choose to suffer if my mind is too
weak or disoriented to help myself through it. Drugs 4 me then. I asked about dying parents, "What's the risk .. that s/he'll die from it?" No such thing as too much when dying.
Having sat for many days & nights around the clock
with both dying parents (stroke/heart & lung cancer),
I feel STRONGLY that it is not up to US to
decide that the dying should endure OUR concept
of THEIR existential experience. After the stroke, my
mother's head pain was so excruciating that I
asked for whatever was strongest to help relieve
her pain. The risks of morphine were explained to
me & I explained to my mother its potential to stop
her breathing. Not a big whiner in general, I knew
she meant the pain was unbearable. She chose the
morphine & died 6 days later. There was NO WAY I
would have preferred her to suffer to earn some sort
of end-of-life Brownie badge.
If the dying can't answer, another thing to consider is
how did S/HE choose to handle physical pain during
life? For example, I had wisdom teeth extracted without
meds during the procedure and had a homebirth. Those
aren't common choices. Deciding the dying should suffer
for their ____ (what?) is like my deciding you should
rely on meditation for your dental work or giving birth.
Not my right, is it? I won't choose to suffer if my mind is too
weak or disoriented to help myself through it. Drugs 4 me then. I asked about dying parents, "What's the risk .. that s/he'll die from it?" No such thing as too much when dying.
Carl Jung and other developmental psychologists write that in the second half of life the goal is to find meaning and to let go of our wounds. As we mature, suffering helps us to do that. For some of us, this won't happen until we are dying. This is psychological need that should not be easily dismissed.
Many of the posts seem to suggest the choice is between medication to sedation or no medication. Perhaps the answer is somewhere in the middle-- the right amount of medication.
Well said Sara. I couldn't agree more.
A common response is . . . the answer isn't easy. Which is precisely why palliative and hospice medicine is different than other areas of medicine - certainly not to imply that neurosurgery, hematology, primary care, etc are "easy", - but the thing that is different about palliative medicine is the degree to which the care is so individualized. Not just to the specifics of care, but also to the degree to which we make a concerted effort to tailor the care to the expressed needs of the patient & family - eg. "I want to be alert enough to talk to my grandkids, I'm willing to 'suffer' a bit more for that pleasure." It is precisely this struggle to do the individually right thing (medically, spiritually, existentially) for this unique patient that makes what we do so different and difficult.
Post a Comment