Palliative Care in the Emergency Department: A Practical Overview of Why and How
- Mar 2nd, 2016
- Nikolai Schnittke
Authors: Nikolai Schnittke, MD (EM Resident Physician, BerbeeWalsh Department of Emergency Medicine, University of Wisconsin Hospital and Clinics) and Haleh Van Vliet, MD (@ – Clinical Instructor/Fellow, BerbeeWalsh Department of Emergency Medicine, University of Wisconsin Hospital and Clinics) // Edited by: Manpreet Singh, MD (@MPrizzleER – Clinical Instructor & Ultrasound/Med-Ed Fellow / Harbor-UCLA Medical Center) and Alex Koyfman, MD (@ – emDOCs.net Editor-in-Chief; EM Attending Physician, UT Southwestern Medical Center / Parkland Memorial Hospital)
The role of palliative medicine in emergency care has received increasing attention since ACEP’s decision in February of 2013 to join the American Board of Internal Medicine (ABIM) Foundation’s Choosing Wisely ® initiative.1-3 In an effort to maintain (and potentially improve) quality of care while reducing costs, ACEP identified discussions regarding hospice and palliative medicine (HPM) as one of ten opportunities for ED providers and their patients to eliminate low-yield and possibly harmful testing and treatments.4 The explicit directive is “Don’t delay engaging available palliative and hospice care services in the emergency department for patients likely to benefit.” 4 A number of resources have been developed to aid ED providers with such efforts. These include the Improving Palliative Medicine in Emergency Medicine (IPAL-EM) project through the Center to Advance Palliative Care (CAPC) 5 and the Education in Palliative and End-of-life Care for Emergency Medicine (EPEC®-EM) curriculum. 6 Of note, EM residency trained physicians are eligible to complete many HPM fellowships and may subsequently obtain HPM board certification. However, gaining such a high-level of expertise is not necessary. The following discussion addresses how simple, fundamental skills in HPM can significantly enhance your practice in emergency medicine.
So, what exactly is HPM? In short, palliative medicine targets anyone with chronic or functionally limiting disease processes. Hospice care branches off of this, focusing on individuals who are likely in their last six months of life. How does this relate to EM? We have all seen terminally ill patients actively considering or already enrolled in hospice care present to the ED requesting assistance with symptom control. On occasion, it may be overwhelmed family members facing the crisis of losing their loved-ones who bring the patient in, not knowing what else they can do or to whom else they can turn when confronted with the reality of death. Even more familiar to us are the critically ill individuals swaying on the fulcrum of life without any advance directives. Such situations represent a particularly difficult challenge in our time and resource limited settings. Large academic centers may have palliative medicine experts available for assistance, but patient acuity and/or other active obligations for palliative staff members can hinder consultation. And, of course, smaller community EDs lack such resources. Thus, developing the skills to care for this patient demographic can save you time and angst while offering patients and their loved-ones a better ED experience.
EM providers are very well positioned to incorporate HPM into their practice. Symptom management – whether nausea, pain, vertigo, physical agitation, or anxiety – is already a large part of what we do. We also know how to gain patient trust and build rapport quickly and effectively. As Dr. Candace Johnson of UT Southwestern once put it, “How many other providers go from hand-shake to rectal exam in under five minutes?” The key is how you approach the situation. Primary palliative medicine has been championed as the ideal approach to all patient care.7 It customizes patient care based on each individual’s values and priorities. For the hemodynamically unstable 24 year-old MVC patient who is otherwise healthy, diagnostic and life-prolonging interventions might be a high priority. For the dyspneic, 72 year-old chronic heart failure patient with multiple recent hospitalizations and significant comorbidities, improved symptom control and more quality time at home with loved-ones may possess greater value than diagnostic and life-prolonging interventions. Ultimately, you must know what matters most to the patient. Is it being able to attend their daughter’s wedding next week? Is it spending Christmas day fully enjoying the company of family and friends without excruciating pain and nausea? Once you know these answers, tailor your care accordingly. How does diagnosing and treating their pneumonia relate to their priorities? Will identification of a massive PE alter how the patient and their family move forward? This brings us to another important point: don’t forget the patient’s loved-ones. When the patient passes (whether that’s today or next year), the degree to which their family and friends emotionally suffer can be diminished if you help establish appropriate expectations and guide perspectives on illness and death accordingly.
What about those hospice patients who present to your ED as a FULL CODE? Despite popular belief, this is not a contradiction in terms. Being enrolled in hospice simply means that the patient is likely in their last six months of life. The patient (and family) should understand this, but may still elect “to go down in a blaze of glory” – i.e. CPR, intubation, the works. Your job is simply to ensure they understand all possible outcomes (e.g. prolonged ICU stay with a potentially very difficult decision for family/friends regarding whether/when to withdraw care versus a more graceful exit with the patient in a mental state that allows interaction with loved ones). Explicitly clarifying your position as an advocate and informative resource for the patient may help engage the patient and family/friends in a more productive/positive discussion regarding next steps. Along the same lines, do not equate “comfort-care” with “doing nothing.” Some recommend never using the term “comfort-care” because of its frequent association with lack of intervention. The successful practice of HPM actually necessitates a significant amount of work on the part of providers to ensure that the patient’s priorities are adequately met. Invasive procedures – such as paracentesis and thoracentesis – may be performed to alleviate respiratory distress or pain. Radiation therapy may be pursued to decrease discomfort related to tumor burden. Infections unrelated to the patient’s terminal illness may be aggressively treated. And nuances – such as need for or modality of supplemental O2 delivery – must be considered. Will the nasal cannula make the patient more agitated without offering other weighty benefits? Will the CPAP/non-rebreather hinder the patient’s ability to interact with loved-ones in their final moments? Again, the patient’s priorities should guide your decision-making.
For the ED physician, preventing adverse outcomes is most often front-and-center in our minds. Thus, redirecting focus to patient priorities may constitute a foreign process. Nonetheless, once you learn how to do this, you may find yourself – and your patients – more satisfied with the work that you do. After all, for a patient on his/her deathbed, receiving ineffective, costly, uncomfortable interventions in the final moments of life is the adverse outcome. As the initial point of contact with the healthcare system for any patient in crisis, the ED constitutes a platform that can determine illness and care trajectories. If we help patients make more informed decisions and establish appropriate expectations up-front, the ripple effect on the rest of the healthcare system could be game changing.
It’s a busy shift in your ED; all the critical care bays are filled with on-going resuscitations. You are providing discharge instructions to a patient in one of your smaller rooms when the charge nurse pops her head in. “I need to clear this room now,” she says, “There’s an unresponsive patient with no O2 sats.” You turn around to explain that your current patient is being discharged when you see this new patient: a cachectic man whose age could be anywhere from 50 to 110. Eyes closed. Spontaneous but labored respirations present. He is lying on a deflated air mattress on top of a hospital stretcher. You’ve seen these patients before. “Terminal, metastatic cancer” – the phrase flashes in your mind. As your discharged patient gets rapidly wheeled out, the usual resuscitation hubbub starts. IV. O2. Monitor. Glucose.
You are starting your assessment when the patient’s grandson walks up and introduces himself. The patient has end-stage pancreatic cancer and was just admitted at another hospital, a 4 hour drive away, he informs you. The providers at this other facility told the family that there was “nothing more to do”, but the patient stated “he wanted to go down swinging.” So he left AMA with his grandson who drove him to your institution hoping that a different team of physicians might provide more assistance. And of course, en route, the patient decompensated. What do you do next?
A number of systematic frameworks have been suggested to approach the end-of-life discussion.8-12 It is important to remember that the end-of-life discussion may not be a single conversation but rather a longitudinal process, depending on the circumstances you are confronting. Having a system will serve you well, even when time is exquisitely limited. Most of the approaches proposed in the literature share the following basic outline:
- Prepare for the end-of-life discussion
- Obtain information
- Assess willingness to hear information
- Provide information
- Respond to emotions
- Review and summarize
1) Prepare for the end-of-life discussion
Treat this interaction as a procedure. We have all heard that 90% of any procedure is set-up and preparation. You wouldn’t want to place a central line in the middle of an ED hallway or get midway through a difficult intubation only to find out your oxygen source isn’t hooked up. Similarly, this procedure involves foresight and set up. Know the location of the family room in your ED. If you don’t have a family room, consider discussing this with your administration. If the family room is busy, have a back-up plan: the triage room, an office room, a room in your flexible care area? Discussing EOL issues is anxiety provoking enough as it is. A busy ED hallway or cramped room with an active resuscitation may distract discussants and hinder their ability to participate in and truly understand the conversation. However, there are definitely circumstances when no other option is available; an authentically empathic, non-patronizing demeanor combined with a calm but confident communication style can foster a palpably better climate for your discussion in such sub-optimal settings. In addition to the location, identify the players: from the ED team, who will be leading the conversation and who will be contributing their perspective as needed – e.g. social work? chaplain? or just you? From the patient’s side, is the patient him/her-self able to participate (never assume that the patient can’t hear you if you decide to proceed with the conversation in the ED room)? Do you need to, or will time allow you to, wait for family members to arrive? As you are getting ready to start the discussion, make sure that everyone present is as comfortable as possible under the circumstances. Optimally, family/friends will be seated. If there is no seat for you and time is of the essence, consider squatting/kneeling at their eye-level so that you appear less threatening or at least more attentive and collaborative.
2) Obtain information
First, find out what the patient and/or family know about their condition. Be as specific as possible and pay attention to subtle clues. Explicitly ask about functional status at baseline and the patient’s opinions on this. Are they living independently? Do they need assistance for toileting or feeding? Are such factors a source of frustration for them? This not only helps you obtain an HPI but also provides insight into perceptions on quality of life while eliciting expectations and possible goals-of-care. Pay attention to the patient’s coping mechanism: are they in denial, are they depressed, do they joke about their illness? Engage the patient and the family in a way that resonates with them. Assess their degree of medical literacy. Does the patient say that the cancer has spread or do they say that they have pulmonary metastases? Don’t talk down to an educated patient and don’t overwhelm a relatively uneducated patient.
3) Assess the willingness of the patient and family to hear information
While most patients and families are engaged in their care and want to know as much as possible, this is not always the case. As a patient approaches end-of-life, they and/or their family may be in denial; this is a normal grief reaction. Some patients wish to be removed from medical decision-making when they learn about a terminal illness and do not want to hear about their prognosis. If a patient or family does not wish to hear information, discuss other potential avenues of conversation: would they like to discuss a treatment plan, goals-of-care, or is there a point person in the family whom you could engage in further conversation? On rare occasions, the answer to all of these questions will be “no”, and you will need to defer the discussion. However, by starting with the above steps, you will at least establish the notion that this conversation is important and that it will likely be broached again.
4) Provide information
Help the patient make informed decisions by sharing knowledge that is relevant to the situation at hand. Use appropriate language that accommodates the patient’s educational level. Tailor the conversation to their most immediate needs: describe what you think is happening to the patient in the ED rather than attempt to prognosticate the unknown. We tend to jump to this step prematurely. However, paying attention to the above steps will help you share your knowledge in a less abrupt manner. Sometimes, a warning shot is warranted: “I’m afraid, based on what we know now, that your illness is progressing” rather than “Your mother is dying.” Be careful not to spend too much time on this. For example, most families don’t want to hear how many rounds of epinephrine have been given. They want to know the result.
5) Respond to emotions
There is no right way to do this, but there are definitely some very wrong ways. Be aware of your own emotional style and how this may be perceived or interpreted by others. The biggest mistake is to skip this step entirely. It doesn’t matter how wooden you sound, if you make an effort to respond to and empathize with the emotions of the patient and/or family, they will notice. That being said, try to avoid blanket statements such as “I am so sorry.” If you have any inkling of the patient’s/family’s perspective and coping mechanism, customize your response accordingly. First, allow the patient/relative to have an emotional response and bear witness to it. Next, connect the emotional response to the news by giving it a name. For example, “You seem angry… Can you tell me what’s on your mind?” 9 Finally, time permitting, repeat the cycle of emotional response until the intensity has diminished. More fully addressing the patient’s/relative’s reaction, attitudes, and feelings will facilitate next steps.
6) Summarize the discussion and formulate a medical plan
Your last action is to summarize the previous discussion. If something is unclear, this is the time to readdress it. Consider asking the patient or family to rate the following three categories in order of importance to the patient: 1) life prolongation, 2) quality of life, 3) comfort. Finally formulate the medical plan as it pertains to the current situation in the ED.
What about the EOL discussion in a case where your patient is actively dying? Just as a cordis placed during a code might not be placed under ideal conditions, the general procedure still follows the same basic step-wise outline. In a situation where there is an active threat to the ABCs, consider the following two priorities:
- Identifying any advanced directives.
- Identifying the patient’s surrogate decision maker.
Once these two objectives are achieved, engage the patient and/or the surrogate decision makers by using the general outline above as much as possible under the given time constraints. In such scenarios, your priorities should include Step 2 (obtaining information about the patient’s values as they relate to goals of care and life-sustaining treatments) and Step 4 (providing information on the course the patient’s condition may take if life-sustaining treatments are/are not pursued). While some patients do value life-sustaining treatment for the sake of life-prolongation only, most will strongly weigh the likelihood of a good cognitive or functional outcome. Below are some pearls and pitfalls to consider when discussing EOL and life sustaining treatments.9
|Preparation||“Do you know his/her code status?”||“I need to ask about your loved one’s values and priorities so that I can manage his/her condition.”|
|Obtain information||“Do you understand what is happening with your loved one?”||“What have the doctors told you about your loved one’s condition?”
“How have things been recently?”
|Obtaining information specifically about goals of care||“Would you/he/she want to be resuscitated/intubated/have chest compressions/have everything done?”||“Knowing that time is short, what would you/your loved one say is most important?”
“What are your hopes for yourself/him/her when you look into the future?”
“What worries you most when thinking about the future?”
|Assess willingness to hear information||Bluntly deliver information or prognostication without a “warning shot” or optimizing patient/family preparedness.
For example, “So the CT scan shows bleeding in his/her brain.”
|“We have some serious news to share with you about your/your loved one’s condition. Is that something you would like to discuss more right now?”|
|Provide information||“Your loved one has x hours to live.”
“There is nothing more we can do.”
| “His/her illness has progressed despite our best efforts to control it.”
“Based on what I see, I think that he/she is dying.”
“I wish we had more options for treatment but I think we have exhausted all of our resources.”
|Respond to emotions||“I am sorry.”||“This must be incredibly hard to hear.”
“I can not imagine how scary this must be.”
“I really wish things were different.”
“You seem surprised. What are your thoughts right now?”
|Summarize and formulate plan||“Let us just keep her comfortable.”||“Based on what you have told me, I recommend that we focus more on aggressive symptom management (as opposed to diagnosis or treatment of the condition itself).”
“We will refocus our efforts on his/her priorities and make this as dignified and comfortable an experience as possible.”
“We will make sure we use all our resources to support him/her and all of you in these final moments of his/her life.”
“We will allow her to have a natural, peaceful death.”
“We will not artificially prolong the process of dying.”
|Specific discussion of CPR||“Do you want us to resuscitate your loved one?”
“Do you want us to press on his/her chest and break his/her ribs?”
“Is your loved one full code or DNR?”
|“Your loved one is close to death, and we expect that at some point soon his/her heart will stop. Given the severity of his/her illness, our recommendation would be to allow a natural death, rather than trying to restart his/her heart when it stops, which could cause the patient more pain and suffering.”
“It is very unlikely that an attempted resuscitation would be successful; in the rare chance that his/her heart did restart, he/she would most likely have a prolonged stay in the ICU with ultimately the same end-point, death.”
“If you agree with our recommendation, we will place an order in the chart so that other members of the team know to allow for your loved one to have a natural death.”
|Specific discussion of intubation/mechanical ventilation||“Do you want us to intubate your loved one?”||“Did your loved one have any thoughts or preferences about the use of life support at the end of his/her life?”
“This procedure would involve inserting a tube down is her/her throat and through the trachea so that a nearby machine could breathe for him/her.”
“We are concerned that placing him/her on this machine may only prolong his/her experience dying.
There is a strong possibility that when he/she does pass, he/she will still be attached to this machine in the ICU and not in the state which you remember him/her. It can make saying goodbye much more difficult.”
Adapted from Shreves, A.
With the patient hooked up to the monitor, sinus tachycardia at a rate of 130 with frequent PVCs is evident. Initial POC glucose is 93. SpO2 tracing (attached to the patient’s ear lobe) demonstrates intermittent waveforms with values hovering around 85%. Occasional gurgling sounds are evident with the patient’s spontaneous but labored respirations, which occur at a rate of 25. Pulses are thready and initial BP is 89/57. Intercostal retractions are present with mild tracheal tugging. Aggressive sternal rub elicits subtle signs of agitation but no verbal response and no eye opening. Pupils are 3 mm bilaterally and minimally responsive to light.
His grandson stands at the entrance to the ED room, appearing overwhelmed. You go stand next to him and he states that his own father (the patient’s son) has not been on speaking terms with the patient for many years. The grandson is the only family member who has an active relationship with the patient; he struggled with alcoholism through most of his life. He was hospitalized this week after a home health nurse found him to be unusually dyspneic. At the outside hospital, “it looked like he had worsening cancer in his lungs” despite ongoing radiation treatments. Prior to hospitalization, the patient was living independently in an apartment but had progressive difficulty caring for himself. He started using a walker 3 months ago and had two falls at home over the past month. He was not on home oxygen. Transition to a nursing home had been broached but the patient was fiercely independent and refused to consider this.
You explain to the grandson that the patient may have a number of different life-threatening disease processes at this time, such as a heart attack, large blood clot in his lungs, or a stroke. You state, “I hate to be abrupt but if his heart was to stop beating, do you think he would want us to push on his chest to help push blood through his body?” The grandson states “I think so, but I’m really not sure. We did want to talk about that stuff.” You explain that the patient is not breathing well at this time and you are concerned that he may have fluid from his mouth draining into his lungs that could cause further life-threatening problems. Typically, the next step would be placement of a breathing tube with a machine then breathing for him. However, there is a strong possibility that if you place the tube, it may never come out and he could die with the tube still in place. The breathing tube is rather uncomfortable for patients and usually requires sedation to be tolerated. You state, “Given that your grandfather valued his independence, do you think he would want us to be doing all this for him?” “I’m really not sure,” responds the grandson looking scared. He continues “You know I brought him here because he wasn’t ready to stop trying. He was a fighter.” You respond “It sounds like he has already put up quite a fight. How long ago was he first diagnosed?” “Two years,” states the grandson, “They had told him he only had 6 months left, but he made it all the way till now.” You respond, “That’s really impressive. He sounds like a strong-willed man. That being said, I highly suspect an acute life-threatening problem right now. We could do lots of different procedures to diagnose and treat him, which might prolong his life anywhere from hours to days to weeks, potentially longer. But even if he did improve enough to leave the hospital, he would most likely have to be in a nursing home at least for rehab.” “He would hate that,” states the grandson quietly. “It sounds like you love your grandfather and have put in a lot of effort to help him. At this point, however, I think it might make more sense for us to focus on his comfort and manage his symptoms without pursuing invasive procedures or aggressive diagnostic measures that at the end of the day may only prolong his suffering.” The grandson stands quietly looking at his grandfather. Heart rate is now down-trending to the 100s. Repeat BP is 74/39 with NS bolus infusing. Only his carotid pulse is palpable. No SpO2 waveforms are detectable although respirations remain unchanged. Staff have brought the airway cart to the bedside and are looking at you. You tell the grandson, “Based on how his vital signs are changing right now, he does appear to be dying. I cannot imagine how overwhelming this must be. Again, I would recommend that we focus on his comfort and not cause additional pain by placing larger IVs, placing a breathing tube, or pushing on his chest to help his heart.” His grandson nods sadly in agreement and acceptance. You clarify in a soft voice, “Does this sound okay to you then?” Again, the grandson nods, this time stating “yes” in a more confident although quiet tone. You pull a chair up to the bedside and invite the grandson to sit down. You ask the nurse to administer 2 mg IV morphine and request that the hospitalist be paged. You ask the grandson if he would like for a chaplain to be present, he states “No, that’s not necessary.” You discuss the case with the hospitalist who agrees to take the patient upstairs ASAP as your ED waiting room appears to be overflowing. You ask the nurse to remove all monitors from the patient and explain to the grandson that you are working to make the patient more comfortable. The patient gets moved to the floor 15 minutes later and is pronounced dead 30 min after you sign his chart. The family declines autopsy.
The above case conclusion is just one of several ways that the scenario could play out or be optimally managed in the ED based on information provided by the patient’s grandson, his emotional response, and any conflicting/supporting information present in the medical chart. The case could potentially take an infinite number of directions based on a variety of such variables. Regardless, the basic suggestions above should enhance your ability to handle the situation in a smooth, ethical, and timely manner.13,14
References / Further Reading
- Goett, R. Fetzer, M. Aberger, K. Rosenberg, M. (2015, June). Why Palliative Care? Why Now? ACEP Now. 36(4). Retrieved from http://www.acepnow.com/article/emergency-physicians-should-provide-palliative-care-options/
- Rosenberg, M. Parker, R. (2014, Jan). Emergency Physicians Can Help Ensure Patients Receive Quality End-of-Life Care. ACEP Now. 33(1). Retrieved from http://www.acepnow.com/article/emergency-physicians-can-help-ensure-patients-receive-quality-end-life-care/
- DeSandre, P.L., Quest, T.E., Lamba, S., Lawson, R.R. “Integrating Palliative Care in the Emergency Department: How to Jump‐Start the Process.” AAHPM & HPNA Annual Assembly. San Diego, CA March 14, 2014.
- Quill, T.E. Abernethy, A.P. Generalist plus specialist palliative care – creating a more sustainable model. N Engl J Med. 2013;368(13):1173–1175.
- You, J.J. Fowler, R.A. Heyland, D.K. Just ask: discussing goals of care with patients in hospital with serious illness. Can Med Assoc J. 2014;186(6):425–431.
- Shreves, A. Marcolini, E. End of life/palliative care/ethics. Em Med Clin N Am. 2014;32(4):955–974.
- Narayanan, V, Bista B, Koshy C. “BREAKS” Protocol for breaking bad news. Indian J Pal Care. 2010;16(2):61–65.
- Baile, W.F. et al. SPIKES – A six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist. 2000;5(4):302–311.
- Fried, T.R. Bradley, E.H. Towle, V.R. Allore, H. Understanding the treatment preferences of seriously ill patients. N Engl J Med, Vol. 346, No. 14. 1061–1066.
- Shearer, F.M. Rogers, I.R. Monterosso, L. Ross-Adjie, G. Rogers, J.R. Understanding emergency department staff needs and perceptions in the provision of palliative care. Em Med Australasia. 2014;26(3):249–255.
- Smith, A.K et al. Am I Doing the Right Thing? Provider Perspectives on Improving. Palliative Care in the Emergency Department. Ann of Em Med. 2009;54(1):86–93.