An elderly woman arrives from a nursing home with acute respiratory distress and altered mental status. She is febrile, hypoxic and hypotensive. She has moderate retractions, increased secretions and significantly diminished lung sounds. She has a signed current DNR/DNI.
A case-based approach to understanding how a palliative care/EM partnership could improve the care of our ED patients and their families.
An elderly woman arrives from a nursing home with acute respiratory distress and altered mental status. She is febrile, hypoxic and hypotensive. She has moderate retractions, increased secretions and significantly diminished lung sounds. She has a signed current DNR/DNI. You crank up the oxygen on the non-rebreather and call the respiratory therapist for bipap, but as the X-ray tech shows you the preliminary images of the socked-in lower lobe consolidations you know things are not going to go well. Your charge nurse arrives with the patient’s elderly husband and middle-aged children, and everyone is staring at you like deer in the headlights.
As nearly 380,000 patients die in emergency departments annually, we as EPs are all-too-familiar with death and dying. It is ironic, therefore, that we devote so little training and continuing education to the subject. Studies show that most emergency departments could benefit from developing better educational resources and best practice guidelines around end-of-life care (Quest, Annals of EM 2009).
How would you have handled the elderly woman in the initial scenario? Basic care should include updating the family, confirming the patient’s DNR status, ensuring the patient is comfortable and making a bed decision. A well thought out electronic medical record End of Life (EOL) set of orders could take things a step further, and cue us to ensure that the patient still receives high quality EOL care as we go on to manage other patients. Orders might include: flagging the bed (so the patient is not inadvertently moved into the hallway), turning off of all monitors, prn med orders (opioids, anti-nausea, benzos and anti-cholinergics for increased secretions), consult for spiritual services and/or social worker, and the dispatch of a trained volunteer or designated staff member to assist the family with their immediate logistics (enough chairs, rotating relatives from waiting room, etc). An excellent online resource for additional ideas can be found online at www.eperc.mcw.edu
An older dialysis patient presents with a dense right-sided hemiplegia. He is minimally responsive with a decreased gag reflex and his cat scan shows a large intraparenchymal bleed. He is currently a full code. His family, including his health care proxy, are waiting in the consult room.
There are several different ways this scenario can play out:
Aggressive care. As EPs this has been our traditional default mindset. No gag + full code = endotracheal tube + ICU.
Care measures only. The patient’s code status is changed and he is admitted to the floor.
Direct hospice placement. The patient’s code status is changed and he is directly placed from the ED to a hospice bed in the outside community.
Although there are multiple human and system variables that affect which of these three scenarios play out, one of the biggest ones is the individual EP’s communication skills. No matter how skillful you are at talking to patients, end-of-life conversations are awkward, difficult and uncomfortable and most of us did not get much training in how to handle them. Subtle differences in wording can lead to very different care decisions. For example, imagine how these two statements in the consult room may impact the health care proxy’s decision:
Your father has had a large stroke and is bleeding into his brain. He is not protecting his ability to swallow and breath. I see he is a full code and if we want to do everything to keep him alive we need to put a tube down his throat right now to help him breath. Do you want us to do that?
Your father has had a large bleed into his brain that has led to a devastating stroke. He is unconscious and can’t talk or move the right side of his body. Right now he is having trouble breathing and appears to be in the dying process. We have some difficult decisions to make. Even with the most aggressive medical care I believe that he is still quite likely to die and that if he does live he will likely have an extremely limited quality of life. He probably would not be able to breath or eat without surgically placed tubes and would likely require around the clock nursing care. He also would have minimal ability to communicate. If your father was here right now and could understand this conversation what would he want us to do?
Plant the Seed
Words matter and most of us could use a little primer on how to phrase these difficult conversations more effectively. Dr. Ashley Shreves has created an excellent podcast on this topic, available as episode #93 on www.emcrit.org. In the podcast Shreves suggests that as trained physicians we are the ones that usually have a better grasp of the medical complexities and nuances of a situation. As such, it should often be our responsibility to step up and help shoulder some of the burden of the decision making. Consider using a phrase like this to open the conversation, “I know this is really overwhelming, if it helps I can share with you my suggestions and what I might do if someone I loved was in this difficult situation.”
To clarify, the ultimate goal here is not to make all patients with projected dire outcomes DNR/DNI in the ED – there are many instances that after talking to the family it is clear that they need more time either logistically (like flying a relative home) or psychologically (they are simply too overwhelmed) to make long term decisions. But having an honest conversation with the family about projected realistic outcomes does often help families make decisions that better align the patient’s values with ED actions. In addition, these conversations plant the seed for future discussions with the ICU or hospitalists. Of note, although most of these conversations clearly have a sense of urgency, it is important to respect the enormity of what we are asking families to contemplate. If at all possible, try and give them time to process their options. Often a trial of bipap can buy a few minutes and may ultimately help the family avoid the additional emotional roller coaster of a hastily placed and then removed endotrachial tube.
Even if we all develop the communication skills of Dr. Phil, asking families to make complex medical decisions during an acute crisis still requires time and focus, both of which may be on short supply during a busy ER shift. Wouldn’t it be great if we could get some real time help to manage these difficult situations? That may seem like a pie in the sky idea but there is already a precedent for the calling of extra resources in other EM situations, such as with trauma, acute stroke and STEMI. So why not have a similar structure in place for end-of-life care? What if a “Code Sunset” summoned an integrated palliative care team or a group of ED “champions” to facilitate EOL decision making? It certainly seems well aligned with the new model of patient-centered care, plus given the finances (30% of Medicare is spent by 5% of patients, of whom 80% are in laskt month of life), it would undoubtedly pay for itself. Some EDs have already piloted these programs. Waugh (J of palliative care 2010) describes 78 ED consults at Scripps in which the hospice team was able to place 29 patients directly into a hospice program. Tellingly Waugh notes, “There is an assumption that all patients want maximal intervention. However, I have found that many want reassurance of care and comfort around the end of life and that does not necessarily include life-prolonging measures”. Although more research is needed, these programs show great potential in helping our patients while easing our own clinical load.
Palliative Care Referrals
Case 3. A patient with advanced Alzheimer’s presents after pulling her G tube out. This is her third ED visit in the last month for the same problem. She is agitated and screaming and will need to be sedated for tube reinsertion.
Case 4. A middle aged woman with metastatic ovarian CA presents with nausea and vomiting suggestive of a recurrent partial small bowel obstruction. She is a single parent who lives with her three teenage daughters and her functional ability to independently care for herself has greatly declined since her last visit.
Case 5. An older morbidly obese cirrhotic, dialysis patient with endstage congestive heart failure and an ejection fraction of 10% presents with increased shortness of breath, fluid overload and mental status change for the fifth time in two months.
Elective ED Palliative Care Referrals: As EPs we have a unique vantage point from which to identify patients who are beginning to fall through the outpatient medical cracks, many of whom would benefit from an elective palliative care referral. Preliminary work by Grudzen (Academic Emergency Med 2010) suggests that up to 18% of elderly emergency department patients may be appropriate for palliative care services. Ultimately getting patients better connected to networks that can help them develop and coordinate long term care plans could be one of the biggest advantages of an EM/palliative care partnership. Referring patients while they are still relatively stable allows patients to receive all of the benefits of palliative care while still giving them time to ask questions and process options. The long-term payoff would be that more patients would have more defined EOL plans and that these plans would be more likely to be shared with their health care proxy. Ahhh, now wouldn’t that be nice?
As Bob Dylan sang, “Times they are a-changin.” For the sake of our patients, and our specialty, it is time we acknowledged and supported the role of palliative care in emergency medicine.
Jeannette Wolfe is an Associate Professor of Emergency Medicine at Tufts School of Medicine’s Baystate campus. In 2012 Dr. Wolfe was recognized by AWAEM as one of the “Inspiring Women in Academic Emergency Medicine”
All questions about the appropriate timing, or not, of palliative care depend on physicians realizing that futile treatments prolong suffering.
To use only one of your examples, Alzheimers patients always progress to dysphagia, a pre-terminal harbinger, and should not be fed through tubes to assuage the grief of a family (or pander to their ignorance as to what it accomplishes).
We do no favors, or show our skill or empathy for humanity, by initiating or continuing treatments that do harm wit no benefit.