Monday, September 17, 2018

The aim of the article was to assess outcomes for nursing home residents with advanced dementia who did and did not undergo surgical repair of a broken hip. Advanced dementia was defined as a Cognitive Performance Scale (CPS) of 5 or 6 and diagnosis of “dementia” or “Alzheimer disease.” By outcomes they meant survival (the primary outcome), pain, anti-psychotic use, physical restraints, pressure ulcers, and ambulatory status. The authors used the MDS (Minimum Data Set) assessment and linked this to Medicare claims to conduct a cohort study of 3,083 long-staying nursing home residents with advanced dementia and hip fracture.
They found, as have other studies of nursing home residents with hip fractures, that patients who underwent surgery had lower mortality rates (the literature stressed the importance of surgery within the first 24 hours). While 35% died within 6 months, and 61% within two years, the mortality was significantly greater in patients who did not have surgery. These results were greatest in the first 30 days; 11% mortality with surgery, 30% without surgery, and resulted in a median survival of 1.4 years with surgery versus 0.4 years if the patient did not undergo surgery. Adjustment attenuated the findings, but they remained significant.

Residents who underwent surgical repair also had less pain, less anti-psychotic drug use, physical restraint use and pressure ulcers; although once these results were adjusted for differences between the two groups there were no differences according to surgical repair. Interestingly the inverse probability of treatment waiting models, which adjusted for differences in characteristics before the hip fractures, suggested that there was less pain and fewer pressure ulcers among patients managed with surgery. (I need someone who knows more about statistics than me to explain why two different ways of statistical correction resulted in different secondary outcomes).
So, the question is how I should use these results in my patient:
1. Are the patients in this population relevant to the ones I care for? Well, as a hospital-based palliative care doctor these are exactly the kinds of patients for which I am consulted.
2. Are the outcomes that the authors measured the correct ones? Well, it seems to me that pain, survival, and restraints are all things that my patients’ families want to know about. Sadly, for these secondary outcomes they could only look at one point in time. Also, to have data on the secondary outcomes, the patient had to live at least six months (it has to do with when MDS data is collected). Thus, for a lot of the patients we do not have these secondary outcomes.
3. Were the two groups similar in characteristics prior to the operation? Sadly, the answer is no. Residents treated non-operatively were much more impaired at baseline. For example, 26% of the non-operative residents were completely dependent in activities of daily living as opposed to only 5% of the surgical residents. Moreover, despite the large number of variables in the MDS, it is likely there were differences between the two groups that were unmeasured that led the surgeons to choose not to do surgery. In addition, it is unclear whether the decision to do surgery was based on patient/family preferences. Thus, one does not know if the reason for the difference in outcomes was based on surgery or whether other variables led both to the decision to have surgery and the outcomes. This is a limitation of not doing a RCT. Finally, the outcomes could be due to a self-fulfilling hypothesis. Given the non-surgical patients’ greater illness/morbidity, there may have been a decision only to focus on comfort. Given this, the treatment these patients received was less focused on prolonging life and thus they died sooner. (This would have nothing to do with the impact of surgery on survival or clinical outcomes).
4. Were the circumstances and methods for detecting the outcome similar? The answer here is yes. The MDS is a very complete way of detecting the outcomes of interest. Although pain was evaluated by the health care provider rather than the patients, there is no reason to think that there would be differences based on which group they were in.
5. Was follow-up sufficiently complete? Again, the answer seems to be yes, although as previously noted, for patients who did not live six months we do not have any of the secondary outcomes.
6. Are the differences big enough that I should care? Again, the answer is at least with the primary outcome the difference did seem quite large as noted before, the secondary outcomes, differences, particularly after adjustment, are much smaller.
So, what does this mean? In the end, as Johnston et al. summarized, the decision to have surgery depends a great deal on the surrogate decision-maker’s view about the patient’s quality of life preoperatively and what is most important postoperatively. I have to say that this article would, for many of my patients, lead me to do surgery and continue aggressive palliative care (the increased rate of ambulation postoperatively -10.7% in the patients with surgery versus 4.8% in those without surgery - would be a big factor for many families). While a randomized controlled file would be better, it is unlikely that one will ever be conducted. (I am given pause by the mostly negative data presented by Johnston on hip fracture repair. She points out, for example, there is the Cochran review of five randomized controlled trials that shows no difference in medical complications, mortality or long-term pain in conservative care versus surgery. While this is not a study of demented patients, it made me realize the data is controversial).
A coda: What I and the editorial found distressing were the high rates of pain and the low rates of hospice in severely demented patients even after they have hip fractures (particularly in the non-operative patients). It also was quite curious that the median time to utilize hospice was 56 days. Given this article, I wonder whether hospice should be discussed and/or recommended for all patients who have severe dementia and a hip fracture. This article should lead you to talk to your trauma surgeons and/or orthopedists to develop a routine palliative care or hospice consultation for these patients.
Robert Arnold, MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk (@VitalTalk). He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!) You can find him on Twitter at @rabob.
More Pallimed posts from Bob Arnold can be found here. More journal article reviews can be found here.
References
1. Berry SD, Rothbaum RR, Kiel DP, Lee Y, Mitchell SL. Association of clinical outcomes with surgical repair of hip fracture vs nonsurgical management in nursing home residents with advanced dementia [published online May 7, 2018]. JAMA Intern Med. doi:10.1001/jamainternmed.2018.0743
2. Mehr DR, Tatum PE, Crist BD. Hip Fractures in Patients With Advanced Dementia What Treatment Provides the Best Palliation? JAMA Intern Med. 2018;178(6):780–781. doi:10.1001/jamainternmed.2018.0822
3. Johnston CB, Holleran A, Ong T, McVeigh U, Ames E. Hip Fracture in the Setting of Limited Life Expectancy: The Importance of Considering Goals of Care and Prognosis. Journal of Palliative Medicine 2018 21:8, 1069-1073
4. Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA. 2000;284(1):47-52
Monday, September 17, 2018 by Pallimed Editor ·
Wednesday, August 31, 2016
by Christian Sinclair

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and a palliative care doctor at the University of Kansas. When he is not tossing out unread journals, you can usually find him playing a board game with his son.
Wednesday, August 31, 2016 by Christian Sinclair ·
Wednesday, August 17, 2016
We begin with an image of Sherwin Nuland as a bright-eyed third year medical student, cutting open a dead man’s chest and cupping his heart with bare hands.
After several moments of desperation, the man, James McCarty, roars a death rattle that stops Nuland in his tracks. We look upon a vivid scene of carnage and defeat—Nuland is soaked with sweat and blood, sobbing and “demanding that he live, screaming his name into his left ear as though he could hear me, and weeping all the time with the frustration and sorrow of my failure, his” (7). Dave, the intern on duty, comes into the room and holds Nuland “as if [they] were actors in an old World War II movie.” He patiently recounts the clinical and biological events that exonerate him of guilt, for McCarthy’s “death inevitably beyond [his] control,” and he had done “everything [he] could.” But what Nuland remembers most from his gentle ministrations is a statement that unravels over the course of the book: “Shep, now you know what it’s like to be a doctor” (8).
Nuland’s encounter with McCarthy serves as a microcosm of the recurring themes that arise from his systematic analysis of the multifaceted ways we approach death. In this failed act of heroism, we encounter the collateral damage of high-tech medicine’s pyrrhic war against death and disease, and the indifference and inevitable supremacy of nature. But it in his remorse that we are introduced to the power and comfort derived from understanding why a body fails, identifying its assailant, and redefining what it means to have a “death with dignity” and what it means to hope.
How We Die: Reflections on Life’s Last Chapter, published in 1994, is a critically acclaimed demythologization of process of death. Winner of the National Book Award for Nonfiction, finalist for the Pulitzer Prize, and New York Times Best Seller, How We Die elucidates and renders approachable the “horsemen of death” that haunt our lives: heart failure, aging, Alzheimer’s, stroke, murder, suicide, AIDS, and cancer. Through a seamless integration of narrative with incisive scientific and philosophical analysis, Nuland, a practicing surgeon at Yale originally from the Bronx, draws from history, literature, and his own personal experiences to provide prescient insights on how we can reconcile our relentless scientific conquests with the disappearing “art of medicine,” and to no longer be afraid of ars moriendi—the art of dying.
Following a systematic approach of presenting central and supporting anecdotes that are first explained by revealing the biological underpinnings, then put into context with historical and contemporary practices, How We Die could be likened to a series of grand rounds, electrified with the emotional punch of a particularly inspirational TED Talk. Scientifically, death boils down to a matter of suffocation—“Man is an obligate aerobe,” and so is it that we fall into a permanent expiration as cells and tissues die from oxygen deprivation (118). In the multifarious ways this suffocation can manifest, Nuland transforms our ailments into the “mounted murderers” (264) that the battalions of modern medicine are pitted against—we face the tactical brilliance of AIDS as it patiently “[prepares] for a massive land invasion” (182); the “malevolent” and “immoral” cancer, “juvenile delinquents of cellular society” with “no other purpose than to destroy life” (208). And yet, in spite of the exponential advancements we have made in effective reconnaissance and honed weaponry, pushing the boundaries that nature has set against us, we have not yet been able to gracefully accept defeat. The “laboratory-based doctors” and “clinical warriors,” absorbed by the quest to diagnose, design, and carry out a cure (what Nuland calls “The Riddle), traffic hope to patients who are “less a human being and more a complicated challenge in intensive care” (149) without follow-through. And when failure is imminent, they cut their losses and tend to emotionally and physically disappear, leading often, as Nuland demonstrates from an account about the prolonged dying of his older brother that he himself sanctioned, to tragic consequences. As he reflects on his profession, he summarizes: “The Riddle is the doctor’s lodestone as an applied scientist; it is his albatross as a humane caregiver” (260).
But in the midst of the tragedy of illness and of medical abandonment, Nuland draws attention to the strength of patients and caregivers who have paved their own way towards a “good death.” For, a “good death” is redefined by the act of resolutely standing by the side of a partner lost to the ravages of Alzheimer’s, hosting one final Christmas dinner where cancer is secondary to bonhomie, or forming a “caregiving surround” of a family of friends to mourn another young life taken by AIDS. A “good death” reclaimed by the love and supportive presence that is made possible by the acknowledgement of disease, and the acceptance of death.
Nuland argues that our coveted vision of a “dignified death”—of being surrounded by loved ones in the comfort of one’s own bed, fading painlessly away with enough time to spare for profound parting words—is little more than a dream that makes the reality of dying all the more disappointing. From the lessons of his patients and his own failures, he calls for a personal redefinition of “hope”; for a “resurrection of the family doctor” and the “understanding of a longtime medical friend” (266); for patient empowerment through education, and the clarity that comes with realistic and informed expectations. As Nuland discovered, the key to overcoming The Riddle is to “listen more to the patient, and ask her less to listen to me” (253), to always remember that “[d]eath belongs to the dying and those who love them” (265).
As Nuland concludes: “Ars moriendi is ars viviendi: The art of dying is the art of living…Who has lived in dignity, dies in dignity” (268).
For further engagement:
-“How Electroshock Therapy Changed Me” - Nuland’s TED Talk about his history of mental illness, and overcoming crippling depression; a particular TED conference favorite.
-”The extraordinary power of ordinary people” - Another TED Talk by Nuland, on the idea of hope.
-“Terra Incognita” - Paul Kalinithi’s (author of When Breath Becomes Air) eulogy to Nuland.
Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.
Disclaimer: Links to How We Die are Amazon Affiliate links. A small percentage of any Amazon purchase from this link goes to supporting Pallimed efforts to share news and information about hospice and palliative care. - Ed.

Wednesday, August 17, 2016 by Pallimed Editor ·
Monday, August 15, 2016
What is a “lethal condition” really? How does the definition change as medical advances are made? Several times a year, I meet parents who’ve had providers tell them that their baby has a “lethal diagnosis” (or worse, that the diagnosis is “incompatible with life”) when testing detects trisomy 13 or trisomy 18. Such dire prognostication sets the stage for all future interactions with the health care community. For some, it becomes a rallying cry to prove providers wrong, for others it becomes a sealed fate. For all, it declares a level of certainty that we just do not have.
This summer, a paper published in JAMA by Katherine E. Nelson and colleagues sought to provide “more data about survival in general and after interventions” for families who have children diagnosed with trisomy 13 or trisomy 18. They conducted a retrospective, population-based cohort used linked health administrative databases for all children born in Ontario between 1 April 1991 and 31 March 2012 with a diagnostic code for trisomy 13 or trisomy 18. The data from this cohort confirms that survival is not as uncommon as once thought.
They found:
- Median survival of 12.5 days for children with trisomy 13 , and 9 days for children with trisomy 18
- The rate of deaths slowed around 3 months of age in children with trisomy 13, and 6 months of age in children with trisomy 18
- 1-year survival was 19.8 percent for children with trisomy 13, and 12.6 percent for children with trisomy 18
- 10-year survival was 12.9 percent for children with trisomy 13, and 9.8 percent for children with trisomy 18
- ~50% of all the children had an organ system with a congenital anomaly (most often cardiac)
While the researchers hope that the survival data presented can help “guide decision making” there are many factors that influence decision making that this study was not designed to delve into. First, the data did not include all prenatal diagnosis, only those surviving to birth. Second, as the authors point out, survival and quality of life are not one in the same. (Although commentator Dr. John Lantos noted, “The concept of quality of life is too vague and subjective to be helpful as a criterion for deciding about the appropriateness of treatment.”) Additionally, the data does not touch upon the decision-making itself – for instance, they did not report the percentage of deaths following decisions to withhold or withdrawal life-sustaining treatments.
So what do I take away from this study on the survival of children with either trisomy 13 or trisomy 18?
- It is time to change the language around the diagnosis of trisomy 13 and trisomy 18. These diagnoses are not universally “lethal” (since greater than 10% survive greater than 10 years) and all surgical interventions are not futile.
- Discussing prognosis and survival is still tough and filled with uncertainty. Which babies with trisomy 13 or trisomy 18 will die after a few days and which will live a decade? We still lack useful predictors of long-term survival when facing an individual family in a prenatal meeting.
References:
Nelson KE, Rosella, LC, Mahant S, Guttmann A. Survival and Surgical Interventions for Children with Trisomy 13 and 18. JAMA 2016; 316(4):420-429.
Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.
Photo Credit: Trisomy 13 via Wikimedia Commons
Monday, August 15, 2016 by Jenni Linebarger ·
Tuesday, September 16, 2014
(In preparation for the 9/17/14 #hpm Tweetchat, guest host Dr. William Rosenberg summarizes a few of the neurosurgical interventions which may be useful in palliative care. - Ed.)
There are three major ways that neurosurgery can alleviate pain:
1. Targeted Drug Delivery in which medication is delivered directly to the brain or spinal cord by way of a very small catheter placed in the spinal fluid. The catheter could be connected to a pump placed under the skin for longer term use. Alternatively, a procedure not much bigger than a spinal tap can be used to place the catheter and bring it out through the skin to an external pump.
When patients require doses of opioids and other medications which give them unacceptable side-effects, like clouding of consciousness, lethargy, loss of appetite, severe constipation, targeted drug delivery can often allow caregivers to reduce or even eliminate such medications, resulting in an improved quality of life and often better pain control.
2. Neurostimulation is the use of electrical stimulation, through small electrodes placed via needle or small incision, to reduce pain. It is especially effective with neuropathic pain (the pain caused by an injured or damaged nerve that sends erroneous signals to the brain causing the perception of burning, itching ,swelling or other kinds of pain). One can stimulate a peripheral nerve, the spinal cord or even the brain (“deep brain stimulation”) to achieve pain control, depending on the circumstances.
Often neurostimulation is not considered in the context of palliative care. But, in such a setting, neuropathic pain can be difficult to address. It is possible to place a neurostimulation lead under the skin and bring it out to an external control (pulse generator). In this way, hard-to-control pain (e.g., after radiation, chemotherapy or the surgical injury of a nerve) can often be addressed without the additional incision and expense of an implanted pulse generator (as is used in non-palliative care settings).
3. Neuroablation is the interruption of certain pain pathways in the brain or spinal cord to achieve pain control. These can be very effective and often will allow the patient to drastically decrease or even eliminate the pain medication s/he is taking. There are a number of such procedures available, depending on the details of the pain. Percutaneous cordotomy, myelotomy and nucleotractotomy are outpatient, CT-guided procedures, done under local anesthesia through a needle, that interrupt the pain pathways for different locations.
Cingulotomy is a procedure done under brief general anesthesia in which a computer is used to target two areas of the brain to interrupt pathways related to suffering. It can be very effective in treating the “suffering” component of pain. Recently, it was found to be effective in treating the air hunger associated with a lung tumor in a case report (see reference here).
Radiosurgical hypophesectomy is a non-invasive, single visit, outpatient procedure targeting the pituitary gland (hypophysis). It is based on decades of experience with surgically removing the pituitary gland for diffuse pain from bone metastases (cancer that has traveled to the bone). No one knows how it works, but it can be very effective. And, since it is completely non-invasive, the risks are very low. Even pituitary function is usually preserved and, if it is affected, hormones can easily be replaced.
References and Resources
Smith TJ, Staats PS, Deer T, Stearns LJ, Rauck RL, Boortz-Marx RL, Buchser E, Català E, Bryce DA, Coyne PJ, Pool GE; Implantable Drug Delivery Systems Study Group (2002). Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug-related toxicity, and survival. Journal of Clinical Oncology 20 (19), 4040-9 PMID: 12351602 (OPEN ACCESS PDF)
Stearns L, Boortz-Marx R, Du Pen S, Friehs G, Gordon M, Halyard M, Herbst L, Kiser J (2005). Intrathecal drug delivery for the management of cancer pain: a multidisciplinary consensus of best clinical practices. The Journal of Supportive Oncology, 3 (6), 399-408 PMID: 16350425
Raslan AM, Cetas JS, McCartney S, Burchiel KJ (2011). Destructive procedures for control of cancer pain: the case for cordotomy. Journal of Neurosurgery, 114 (1), 155-70 PMID: 20690810
Hayashi M, Taira T, Chernov M, Fukuoka S, Liscak R, Yu CP, Ho RT, Regis J, Katayama Y, Kawakami Y, Hori T (2002). Gamma knife surgery for cancer pain-pituitary gland-stalk ablation: a multicenter prospective protocol since 2002. Journal of Neurosurgery, 97 (5 Suppl), 433-7 PMID: 12507070
What: #hpm chat on Twitter
When: Wed 9/17/2014 - 9p ET/ 6p PT
Host: Dr. William Rosenberg Follow @wsrosenbergmd
Facebook Event Listing: https://www.facebook.com/events/1443430942595064/
Topics:
T1 What has been your experience, if at all, with neurosurgical procedures for palliative care?
T2 Where do you see such procedures fitting into the overall palliative care of patients?
T3 What aspects of these procedures could be modified or changed to make them more beneficial to suffering patients?
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using nurph.com, for ease of following.
We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur
(An earlier version of this post appeared first on Dr. Rosenberg's website Center for the Relief of Pain. - Ed.)
(Edit - 9/17/2014 - added links to transcript and analytics - Ed.)
Tuesday, September 16, 2014 by Christian Sinclair ·
Sunday, June 19, 2011
Here is the video (link to original post):
Below are some of my favorite lines/segments because they emphasize the frustrating weaknesses of our current approach to care of the critically ill:
"His functional score is -2, which means death within minutes."There are other little gems I don't want to spoil that will make sense to anyone who has worked in the hospital, and for the non health care professionals reading this post I think anyone who has had a loved one critically ill will recognize some of these absurd situations that divorce the care of the numbers from the care of the patient. This point is highlighted in my favorite line of the video which is repeated over and over again from both the hospitalist and the ICU nurse:
'The cardiologist who orders a stat echo, EKG Q1 hour, and a iTunes enhanced pacemaker so he can bill for music therapy.'
"'Everyone deserves to die with a normal BMP."
"I'm taking care of him...but not really."
Listen all the way to the end to get a sense of what HH really thinks about palliative care in the hospital. He has been a big supporter of palliative care and he gets the fact that palliative care should be far upstream from just dying patients in the ICU. For examples see some of his other posts:

End of Life Care Discussion Should Occur Before Death
The Power of Love: Going to Dialysis Hell and Back
Leave your thoughts here but also go to Happy Hospitalist's blog and leave comments there because it is pretty popular and our thoughts might get to people outside our normal blogging circles
Sunday, June 19, 2011 by Christian Sinclair ·
Thursday, April 14, 2011
I can't get enough of this month's Surgical Clinics of North America (April 2011). Thoughtfully presented, the entire issue creates a three dimensional view of palliative care in surgery.
Dedicated to Jack Zimmerman, MD, FACS, who helped establish one of the first hospices in the US while Chief of Surgery at Church Home and Hospital in the 1970s, Surgical Clinics of North America presents a well-rounded and well-thought through collection of papers on Updates in Palliative Surgery. Geoffrey Dunn's introduction outlines the successes of our field, while also honestly presenting the challenges to its growth - from the limited research funding to the heated political arena, even daring to use the term "death panel." He generously credits our field with as being "a timely lens through which the socioeconomic and spiritual bankruptcy of the current health care system [...]"
Here is the Table of Contents (no article is open access, there are some free editorials):
Thursday, April 14, 2011 by Unknown ·
Tuesday, April 20, 2010
[Edit 9/9/10: Welcome New York Times Readers! Please feel free to leave a comment and let us know you are here. And if you are looking for more surgical related posts, click here. For first-time readers of Pallimed check out our FAQ. And lastly you may be interested in our Arts & Humanities sister blog. - Sinclair]
An 85 year old woman with hypertension and ischemic cardiomyopathy presents to the emergency room late one night with severe abdominal pain. She is found to have a large, and leaking, abdominal aortic aneurysm. The on-call vascular surgeon comes in from home in the middle of the night and has a half-hour long conversation with the patient and her children about attempting an operative repair. The surgeon knows the chances of the patient surviving the immediate surgery aren't great, perhaps 60%, and the post-operative period will likely be rocky - days in the ICU, maybe longer, with a good chance of needing mechanical ventilation for that long or longer, not to mention acute kidney injury, need for dialysis, and stroke. The alternative is an almost certain death for the patient within a day or two, although the patient can be made very comfortable. The patient is told all of this, agrees to the procedure, and 3 days later is still ventilated, anuric, and needs CVVH (continuous hemodialysis). Her family at this point asks, insists, that dialysis not be started and the patient be removed from the ventilator and allowed to die comfortably. 'She wouldn't want any of this.' You, the palliative consultant, get the consult call from the SICU (surgery intensive care unit) case manager, because the surgeon is so upset and angry this is happening she couldn't bring herself to call you herself.*
Sound familiar?
Critical Care Medicine has a fascinating qualitative study about surgeons and end of life care which speaks directly to this, and similar, situation. It's an excellent paper for the teaching file, particularly for fellows who don't have surgical backgrounds (which I assume is most, but thankfully not all, HPM (hospice and palliative medicine fellows these days).
The paper presents a small qualitative study of 10 physicians (mostly surgeons; a few non-surgeons who do extensive work in SICUs) at two institutions who participate in high-risk procedures, and involves extensive open-ended interviews about end of life care post-operatively, and attitudes towards advance directives, based on specialty specific cases presented to the surgeons (cases which present similar scenarios as far as I can tell to the one I described above). A grounded theory approach was used to establish and describe the themes that emerge. Most of the paper simply describes those themes.
The major theme they identify is described as such:
Respondents described a complicated relationship involving negotiation with patients who require high-risk surgical procedures. According to physicians, this interaction creates an informal contract between the surgeon and patient in which the patient not only consents to the operative procedure, but commits to the postoperative surgical care anticipated by the surgeon. We have named this implicitly understood contract “surgical buy-in.”What they describe is that the surgeons either feel an implicit contract exists between the patient and the surgeon that if the surgeon is going to attempt this risky procedure, and that the patient consents to this, that they are consenting to (what generally seems to be an ill-defined) post-operative period in which essentially the surgeon decides what is necessary and appropriate care/treatments. While not actually stated in the paper, my sense is that there is an affinity between the reality that intraoperatively the surgeon has tremendous latitude in deciding how to proceed to make the surgery successful (you don't consent the patient mid-operation about whether or not to ligate the hypogastric artery), and the latitude they feel is necessary to ensure the success of the post-operative period. It's a 'package deal' (this language is used by a subject).
The surgeons described that part of the informed consent process for the surgery involves this, although it seems that at times this is frequently implicit (my sense here is that the expectation is that if the surgeon describes what could happen post-operatively and the patient still agrees to the procedure, then there is an implicit consent/agreement to all the post-operative care that the surgeon feels is necessary to keep the patient alive). The length of time needed post-operatively also does not seem to be explicitly defined by the surgeons in this process (which seems very understandable to an extent - the distinction between 7 days and 8, or 14 and 21, are arbitrary and in reality are patient-specific, and dependent on what actual complications occur, etc. etc.).
They also describe the surgeons' description of grief, guilt, frustration, and culpability when these events happen. There is a distinct sense of betrayal as well - that the surgeon told the patient this could happen, the patient agreed to take the risks, and when things don't go well immediately, the patient (or family) wants to stop, even when the surgeon thinks there is a chance s/he could pull the patient through. A key quote:
Respondents described situations in which requests for limiting postoperative care were denied. Surgeons' rationale for this course was based on the patient's potential for recovery: “For example, you know some people get pneumonia, but 90% are able to get through it and get off the ventilator and . . . that is sort of a bump in the road to that, and from my point of view you have to be willing to endure that on some level if we think you are recoverable.” Surgeons noted that this approach was paternalistic and even might be contrary to wishes expressed in the patient's AD but felt that the patient's potential for recovery as well as the preoperative negotiation permitted the continuation of aggressive support.
In my experiences with these situations the sense of betrayal and self-doubt are very acute for the surgeons. Colleagues have described to me acute feelings of causing harm to a patient: putting them through a major procedure and the post-operative care, for 'nothing,' when they could have just made the patient comfortable in the first place (for emergent procedures) or at least avoided the pain, cost, and human effort of an elective procedure. If they had known the post-op care would have been unacceptable to the patient they wouldn't have done the procedure in the first place - these were surgeons who were comfortable with their patients declining life-saving operations (they enact appropriate symptom-directed treatment and call the palliative care team) - and didn't feel like they were pressuring their patients into operations, or hiding from them what the post-operative course could involve.
I think it's a very different perspective from what our patients/families feel in these situations (I'm speaking here about personal experience as a palliative consultant, so I should acknowledge that I'm describing a self-selected group of patients/families). Most of the time I've witnessed these events the patients/families are grateful: they knew it was a long-shot, the doctors gave it their best shot, Mom knew there was a chance this would happen but was hoping it wouldn't, and it's ok that it didn't work out, now please can you make sure that Mom doesn't get a tracheostomy? The 'problem' per se is not that the patient didn't know the risks, it was that they agreed to the surgery hoping none of that would happen. And, yes now I'm introducing a boxing metaphor, the idea of going 'one or two rounds' then throwing in the towel is just plain fine with the patient/family. It is of course not fine with the surgeon, who thought the patient was agreeing to a lot more, and may not have decided to proceed with the operation in the first place knowing that there was a 2 round limit.
It's a very different perspective than what we (and I'm not completely sure how I'd define what I mean by 'we' there - internists, family docs, palliative clinicians, etc.) bring to end of life situations. Patient gets pneumonia and respiratory failure, wants to be full code and agrees to ICU level care, goes to the unit, gets intubated, and 10 days later when he can't be weaned from the vent, the patient or family says 'no he'd never want this, he wouldn't want a tracheostomy or gastrostomy tube, unhook him and make him comfortable.' Generally most of us are just fine with this, we feel we did our best, patient didn't get any better, trach/PEGs suck, and even if there's a chance he'll live he has the right to say no to this. It is very different for surgical patients, perhaps because what happens is a consequence of the surgery (at least from one perspective). In addition, I think this is due to a sense of deep personal responsibility that most non-surgeons don't have, and can't have (although as I've been thinking about this since reading the paper I wonder if there are similarities here with stem cell transplanters/BMT docs).
I have a distinct memory of one of my attendings, early on in my palliative fellowship, talking with me about surgeons. Those of us who didn't go through surgical training tend to think of surgeons as some sort of different species of physician: there's a stereotype of the egotistical, cowboy-hero surgeon who'll never give up, is unrealistic about 'his' patients' chances of living through the surgery and recovery, etc. (Obviously not everyone feels this way about surgeons, but I certainly went through my residency internalizing some similar caricature of my surgical colleagues). My attending told me something like 'Surgeons have a bond with their patients that is much stronger than internists. If you cut someone open, it changes your relationship with the patient in a way that internists just don't have.' I thought to myself at the time that that was really weird. Surgeons are cold heartless scapel jockeys - how could they have a bond deeper than my patient-centered, humanistic, whole-person approach? Well like a good fellow I remembered what he said, and slowly came to realize he was right.
Ignoring any argument about whether this bond/relationship is any qualitatively 'deeper' or 'better', or if this applies to all surgeons etc. (because clearly the humanistic patient-centered approach doesn't apply to all non-surgeons), let's just agree that it is different and different in a way that's important to understand, and appreciate, and respect in our role as palliative consultants. I think I entered palliative care training not understanding, and certainly not respecting, my surgical colleagues' different set of challenges, passions, and boundary issues, and I've come over the years to enjoy working with surgeons really more than any other specialty that consults me. The 'challenges' and 'boundary issues' can be pretty intense, but they're at least more interesting than internist X not wanting to tell patient Y that their end-stage-dyspnea at rest-20m 6 minute walk test-COPD is a terminal illness because it might make the patient cry and how can you be sure anyway?
I've probably broken some blog etiquette by writing a post this long, so I'm not going to talk about how these situations can be prevented (or if they can be; part of me doubts they can, at least for emergent procedures), or how one walks the thin line as a consultant in these situations (advocating for a patient, but also responding to a devastated, or disappointed, or angry colleague) - please feel free to discuss this in the comments.
*This is not a description of a real case I've encountered, although I've seen variations of these events frequently, but a narration of a case similar to what it sounds like they presented in this study.
While I'm disclosing things, I should probably mention that I work with 2 of the authors of this study, and for sure know at least one subject (who told me as much).
Tuesday, April 20, 2010 by Drew Rosielle MD ·