Friday, May 24, 2013
Modal verb (n.): a verb such as can, must, may or will that is used with another verb (not a modal) to express possibility, obligation, permission, intention, etc.
- Most physicians discussed life-sustaining treatments and only discussed palliation after the patient revealed his preference against intubation.
- 54% of physicians used a "must" statement when discussing life-sustaining treatments (e.g. "Medically, he needs to go on a mechanical ventilator") with another 6% using "will" statements and 4% using "usually" statements (e.g. "usually, we put patients like you on a ventilator").
- Only 86 out of 114 physicians reached a point in the conversation where palliation was discussed, in spite of the man's wish for comfort measures over intubation.
Friday, May 24, 2013 by Lyle Fettig, MD ·
Wednesday, May 22, 2013
(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City. Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)
In the March issue of Pediatrics, Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on the audacious task of encouraging pediatricians to step into the role of decision maker for terminally ill children and, in doing so, help alleviate the burden of making decisions regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski call into question the practice of requiring the “opt-out” approach to CPR, and state that this “fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children.” The authors then provide two tenets on which physicians ought to base this action of taking over decision making for the parents of terminally ill children.
The first tenet is a brilliant description of the “therapeutic goal” of CPR, one that I would love to see come into more common use, to become as second nature in physicians minds’ as being able to state that “the therapeutic goal of antibiotics is to kill bacteria, or aid in the killing of bacteria.” The authors ask that physicians begin to look at the intervention of CPR in terms of its therapeutic goal being “not merely to resume spontaneous circulation but rather to provide circulation to vital organs to allow for the treatment of the underlying proximal and distal etiologies for the arrest.” This definition of the therapeutic goal of CPR was elucidated from the article by Bishop, et al, in their 2010 piece from the American Journal of Bioethics, which also asks physicians to rethink CPR’s utility based on its ability to address “the underlying disease process or…the distal causes of arrest.”
Perhaps it would.
If one looks at physician’s prescribing practices in terms of using antibiotics1, often despite guidelines and recommendations and clinical evidence that they are not going to aid in reaching a “therapeutic goal,” it seems unlikely that when it comes to holding back on THE intervention, that physicians will actually be able to commit to making a much bigger decision for their patients.
Let’s read that again, especially the part about “All treating providers agree…” Like adult patients facing a terminal illness, pediatric patients facing terminal illness often have a long list of treating providers. Just about any –ogist or –ivist may have some role on the treating team and could then be considered among the treating providers. The biggest challenge it seems is getting any group of physicians, who are highly educated and clearly very caring and committed providers, to agree on prognosis. Add in to that needing to agree on it publicly, perhaps in front of a patient or parent(s), and to remain consistent in it, along with the profound difficulties with prognostication itself in pediatric patients2, and I propose that the situations in which the criteria to move forward with physician derived DNR orders are going to be rare.
While my critique is in no way directed at the work of Clark and Dudzinski, who do a lovely job of outlining their objective, using case examples, and pulling in bioethical principles, especially as they apply to the unique nature of the parent-child relationship, I do find myself feeling critical of us practicing physicians and wondering if we are really up to this task. Is it in the nature of pediatricians to take this on? When I lecture on pediatric palliative care for our fellowship lecture series, I point out that as much as kids are not just “little adults,” and that they require a vastly different approach to providing them with palliative care, so is the same for pediatricians. Being med-peds trained, and working in both adult and pediatric palliative care, as well as a pediatric hospitalist, I can tell you: pediatricians are different. Much different from internists. It’s a gentleness of heart and spirit, an eternal optimism toward the world, a bruised but never relinquished hope that we really can make a difference, one child at a time. It’s what gives these people the ability to be the doctors that they are: serving kids and their families, advocating for children, and very often, retaining a certain sense of wonder at the world. These same qualities, though, when it comes to tough conversations, giving bad news, breaking the hearts of parents, do not work well. You think it’s hard to tell a wife or an adult child that the 87 year old patient is not going to recover from his cancer and that he is going to die? Imagine looking a parent in the eye and saying those same words. I think that’s why many of my colleagues, even seasoned adult palliative care providers, have looked at me and said, “Uuuuugh. How can you do what you do?” And most pediatricians’ responses? Well, let’s just say I often feel like I should relocate to the Island of Misfit Toys.
With this in mind, I am even more appreciative of any calls to action of the type in this article. End of life decision making in pediatrics is wrought with legal, moral, ethical, personal and emotional entanglements that vary widely. Attempts at creating a standard of practice, or at least suggesting one when it comes to end of life decision making for children seem so reasonable and necessary. A shining example is the work of Dr. Sarah Friebert and Dr. Kaci Osenga in creating a trigger list for perinatal palliative care consultation.3 Having these trigger lists helps raise an awareness of the need for appropriate pediatric palliative care, much like the “Check Engine” light on the dashboard alerts one to the need to do just that. Without the proper tools to look at the engine and address the issue, though, that light does little to actually fix the problem. Evidence shows us that, just like I have minimal comfort with opening the hood of my car, so do pediatric residents, fellows, and attendings themselves have minimal comfort in handling these difficult patient care situations. A study by Orgel, et al, noted that 75% of pediatric residents, 60% of pediatric fellows, 40% of pediatric attendings (general and subspecialty) felt their knowledge and comfort level in delivering bas news was “less than sufficient.” 4
What would we say if 40% of mechanics told us they felt their knowledge level was “less than sufficient” when it comes to helping us with that pesky “Check Engine” light? Or, what if 40% of intensivists felt their knowledge level was “less than sufficient” to intubate a patient, or run their pressors, or place a central line?
It is through articles that place a call to action, such as Clark and Dudzinksi’s, that practitioner’s are given the opportunity to reflect on their own practice, to see that there are guidelines and support structures for dealing with these gut wrenching situations, and develop a skill set for use when the need arises. We need to have the skill set so that in those complex, difficult moments of crisis, we can feel the comfort that comes with a plan. We can guide our team, our learners, and most importantly, guide and support our patients and their families.
Wednesday, May 22, 2013 by Emily ·
Twitter is changing how data can be accessed, which will more than likely lead to the demise of @tweetchat. :(
— TweetChat (@TweetChat) May 4, 2013
Ok anyways this post is not really about how great #hpm tweetchat is and how to use it, and the wonderful community. You can read that in our previous pallimed post here.
@twitter I am among the 100s of 1,000s of #twitter fans distressed by your decision re: #tweetchat @tweetchatplease let us in on why/what
— Wayne McEvilly (@waynemcevilly) May 6, 2013
While nothing replaces the website based simplicity of Tweetchat.com if you are thinking of participating in our Wednesday night weekly chats you can always try HootSuite and Tweetdeck (app based) and a newer site called oneQube has recently sprung up promising to fill the void.
by Jeanette Ross ·
The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. P’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. P’s death. The next night, the bedside nurse charted several times that Mrs. P was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 92 year old woman, tied down and denied treatment for her suffering.
Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.
Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. P’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.
Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering. In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:
- Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
- Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
- Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
- Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866. (Sub Req'd)
2. Gallagher, A., (March 21, 2010) "Moral Distress and Moral Courage in Everyday Nursing Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16 No. 2. (Open Access)
3.Meltzer LS, Huckabay LM. Critical Care Nurses' Perceptions of Futile Care and Its Effect on Burnout. Am J Crit Care May 2004 13:202-208(Open Access)
4. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (Open Access)
"Moral Distress in Palliative Care Teams" presentation by Dr. David Weissman
Medical Futility Remains Leading Cause of Moral Distress among Nurses via Medical Futility Blog
by Christian Sinclair ·
Wednesday, May 8, 2013
At the insistence of her parents she reluctantly attends a youth Cancer Support Group. “Support Group featured a rotating cast of characters in various states of tumor-driven unwellness. Why did the cast rotate? A side effect of dying.”
However things drastically change when a gorgeous boy named Augustus “Gus” Waters suddenly appears at support group. Augustus Waters is seventeen, he has osteosarcoma and had part of a leg amputated. Gus and Hazel connect and the romance slowly blossoms.
The book portrays the relationships of Hazel and Gus with each other, with their parents/family, healthcare professionals, healthy kids, and other “cancer kids” while they live their limited life the best they can. It is clear how serious illness affects the already difficult teenage years.
Below are some “palliative” and quality of life (love) related quotes from the book:
- “Depression is a side effect of dying.” Hazel
- “Maybe 'okay' will be our 'always”
- “You gave me a forever within the numbered days, and I’m grateful.”- Hazel
- “That’s part of what I like about the book in some ways. It portrays death truthfully. You die in the middle of your life, in the middle of a sentence”
- You can follow John Green on twitter @realjohngreen
- You can follow John Green on youtube and watch some quirky videos
- Listen to the The Fault In Our Stars Music Video inspired by TFIOS book by Troye Sivan.
4. Read the lyrics of the song in #3 they are just inspiring.
5. You can re-read TFIOS wonderful quotes here. (spoiler alert )
6. Read the Q & A with John Green about TFIOS (spoiler alert)
7. Gather some friends and have a book club. (spoiler alert)
8. Learn about Esther Earl, to whom TFIOS is dedicated. Esther was a teenager who had Thyroid cancer and developed an online community of friends by video blogging. Esther was a nerdfighter who died of cancer in August of 2010. She and John Green were friends. Watch Esther's YouTube videos here and learn about the organization her family set up in her memory.
Wednesday, May 8, 2013 by Jeanette Ross ·
a. All medications and laboratory tests that do not promote comfort should be discontinued.
a. The family may wish to stay in the hospital, either with or without hospice. Given that roughly 70% of patients die within 24 hours of having life sustaining treatments stopped in the ICU, this is a reasonable option for the first day. Staying in the hospital for longer periods may not be the best option as the staff have competing responsibilities, hospitals are not set up to focus solely on comfort, and many hospitals have a 2-3 day time limit for in-hospital hospice.
b. For patients who have symptoms and are actively dying, the most appropriate location may be an inpatient hospice unit (either a stand alone unit or located in a long term care facility). These units are staffed by hospice nurses, social workers, and physicians and provide excellent palliative care as well as attention to families’ psychosocial and religious needs.
c. Taking the patient home with hospice may also be a good option for families, provided they have enough support and are willing to have their loved one at home. It is important to remember that when a patient is at home, hospices provide roughly 2-4 hours of care a day depending on the patient’s needs. Thus, the family needs to understand and be willing to provide basic comfort care for their loved one (with direction and guidance from the hospice).
*PRN = as needed
Original Case by Robert Arnold, MD, Edited by Christian Sinclair, MD
by Christian Sinclair ·