By: Allie Gips, M.D., Alison Jaworksi, M.D., and Emiliy Zametkin, M.D.
Case: An 82 year-old female with a past medical history of HTN, DM, CAD and cardiomyopathy with multiple recent admissions presents with shortness of breath. The patient had been admitted one week prior, during which time her condition had deteriorated significantly. The inpatient treatment team consulted the palliative care service during that admission, and on the basis of that consultation the patient and her family decided to focus on providing comfort (rather than curative) care. The patient was discharged home with a plan to initiate hospice services. The patient returns today with her son complaining of gradually worsening shortness of breath since discharge.
We know how to manage shortness of breath. As emergency medicine providers, we know how to obtain a focused history and perform the physical exam. We know how to use bedside ultrasound, how to read a chest x-ray, and what labs to order. And we know many ways to treat symptoms depending on the underlying etiology. The diagnostic and therapeutic options are not our focus in this case. Today, we want to focus on what makes this particular patient unique: she is a hospice patient. What do we need to do differently in the care of ED patients on hospice?
Why do hospice patients present to the Emergency Department?
We know that many emergency department (ED) visits at the end of life are “avoidable” (Alsirafy et al, Wallace et al). It is our job to ask the question, without suggesting fault on the part of the patient, family, or the hospice agency: why wasn’t this ED visit avoided?
In fact, hospice patients present to the ED for the same reasons as other patients: uncontrolled symptoms and/or fear. We often think of hospice as “comfort-focused care,” and if the patient is not comfortable, they will seek help. In addition, the family members of hospice patients must assume significant responsibility in making care decisions for their loved one, which can in and of itself be intimidating or overwhelming and lead to an ED presentation. These situations occur despite the presence of a visiting hospice nurse and/or a 24/7 hospice phone-consultation service. Because of these phenomena, ED providers must approach hospice patients a bit differently. Aside from the elements of a clinical evaluation, providers must figure out what resources they used prior to coming to the ED. If they didn’t reach out to the on-call service, why not? Do the patient and their family understand hospice and all of the implications? Do they understand their options for care? And, most importantly, are these options sufficient?
Always address goals of care.
What are your patient’s goals of care today? This is a good question to ask during any patient encounter, but especially with a hospice patient. A “chart biopsy” to find documentation of the patient’s goals of care is a good place to start, but it is only a start. Goals of care can be fluid and dynamic. The patient’s (and family’s) views and desires may have changed since their last visit, for a multitude of reasons. Or the patient and the provider may have interpreted the details of the hospice discussion differently. It is our job to ask.
Good questions to start with:
- What have doctors told you about your condition (cancer, heart failure, COPD, etc.)? What is your understanding of the current plan?
- It seems you have chosen to focus your healthcare on maintaining comfort rather than trying to cure your disease. Is this correct?
- It is my understanding that you would want as natural of a death as possible. Is that still what you want?
Remember: a goals of care discussion does not mean, “Do you want a tube down your throat? Do you want CPR?” These are the questions that matter to us. They may not be what matter most to our patients.
What additional treatment options should we consider in our hospice patients?
- Opioids! Opioids should be your go-to medication for pain. Opiates/opioids can also be very effective to treat shortness of breath in a hospice patient, as they can relieve air hunger. Remember that depending on their recent pain management plans, these patients may have high opioid tolerance, so review what they have used in the past to help figure out a starting dose. (Need help with your conversion from a fentanyl patch to oral morphine? Check out medcalc.com/narcotics.html)
- You may not be worried about the dangers of opioid addiction in these patients, as studies have shown that addiction is rare in patients being treated in palliative care (Porter). However, that doesn’t mean the patient and/or their family is not worried. If they are already prescribed opioids, are they taking them? How much? How often? If they are not taking them in effective doses and/or frequencies, why not? Studies have shown that families of patients with terminal cancer want more information about opioids (Okamoto et al). Offer them that information; help them feel more comfortable. Patients and families may need help understanding the difference between addiction – which is characterized by drug-seeking behavior – and physical dependence and tolerance – which are natural sequelae of long-term opioid use (Perron). They may also need treatment of their constipation; keep in mind that this is the one side effect of opioids that never goes away.
- Consider a multimodal approach to pain management. What is the underlying pathophysiological cause of the pain? Is this bone pain, muscle spasm, or neuropathic pain? Add medications that have been demonstrated to be effective in treating specific types of pain. For example, bone pain can be treated with bisphosphonates and NSAIDs. Baclofen and diazepam can be used to treat skeletal muscle spasms. Neuropathic pain is sometimes treated with gabapentin, clonidine, or TCAs. Some emergency medicine physicians may be unfamiliar (and uncomfortable) initiating treatment with some of these pharmacological therapies. However when your patient remains uncomfortable despite the conventional interventions above, provision of these less common medications could be the answer. Especially for patients already on these medications, it may be helpful to include them in your analgesic cocktail.
- Benzodiazepines can be helpful for patients with shortness of breath whose symptoms have a strong anxiety component, and they can also be helpful in terminal delirium (you can also try haloperidol for terminal delirium). Remember that delirium should also be managed with non-pharmacological interventions. These include having family and friends present at the bedside, opening window blinds, clearly displaying the date and time of day for the patient to see, and by controlling lighting/sounds in the room. Similarly, shortness of breath can be addressed with supplemental oxygen administered by shovel masks, draining ascites or effusions, and by repositioning the patient (Macleod et al.)
- For the actively dying patient, one symptom that is often more troubling for families than patients is secretions. Good options for secretions: glycopyrrolate 0.2 mg IV Q6H, atropine ophthalmic 1 to 2 drops PO q 2-4 hours OR 0.2 – 0.4 mg IV, or a scopolamine patch (which will have a delayed onset of ~6 hours).
- Do not forget to address the cause of their symptoms insofar as it is possible within their goals of care. While it may not be possible to cure their underlying disease, you may be able to treat the acute cause of their symptoms today. Understanding the pathophysiology of each patient’s symptoms help us understand the best medications to treat our patient’s condition, which may bring comfort.
What additional disposition options should we consider in hospice patients? What are the myths about disposition for hospice patients that we should work to dispel?
- Myth: Hospice means do not hospitalize. As described above, hospice patients have more health resources than our average ED patients. However, that does not mean that home hospice is easy. It is challenging and often involves family members taking on new, daunting responsibilities. As such, it may be that your patient requires admission for a respite stay, or for aggressive symptom management, particularly at the end of life.
- Myth: Hospice means you have to die at home or in an actual hospice. Often, end of life symptoms can be appropriately managed at home. Sometimes though, symptoms become so severe that they may require admission for IV medications and frequent nursing care to achieve the comfort they sought when initiating hospice. If you are fortunate enough to work in a hospital or health system with a palliative care or hospice unit, great! Admit your patient to that service. But for most EM providers, these patients would need to be admitted to the general medical floor.
- Myth: DNR/DNI means do not place in the intensive care unit. This is a slightly different issue, but it is one that comes up frequently. “Do not resuscitate” does not imply “do not care” or “do not treat” (DNR Means Do Not Treat… and Other End-of-Life Care Myths). There are many reasons why patients require an ICU level of care, and the fact that someone has stated that they do not want a cardiopulmonary resuscitation does not mean that they do not want or do not deserve all of the other benefits of having a higher level of nursing care and medical attention. As with all of our patients, our job is to think about why a patient might require a certain level of care, why they would do poorly with a lower level of care, and then react accordingly.
Case wrap-up: The patient and her family were given the choice of whether they wanted admission versus discharge home with home hospice and increased diuresis. They felt uncomfortable dealing with these symptoms at home and said that they were not ready to watch her die. As such, they opted for admission. She was admitted to our oncology team, where she received diuresis for two days and then returned home, still on hospice.
Alsirafy, S.A., Raheem, A.A., Al-Zahrani, Mohammed, A.A., Sherisher, M.A., El-Kashif, A.T., & Ghanem, H.M. (2015). Emergency Department Visits at the End of Life of Patients with Terminal Cancer: Pattern, Causes, and Avoidability. American Journal of Hospice & Palliative Medicine, 1(5).
DNR Means Do Not Treat… and Other End-of-Life Care Myths. Emergency Physicians Monthly. Available at: http://epmonthly.com/article/dnr-means-do-not-treat-and-other-end-of-life-care-myths/
Macleod, R., Vella-Brincat, J., Macleod, S. The Palliative Care Handbook: Guidelines for Clinical Management and Symptom Control (8th ed.). Sydney: Crucial Colour, 2016. Available at: http://www.hospice.org.nz/resources/palliative-care-handbook.
Okamoto, Y., Tsuneto, S., Morita, T., Takagi, T., Shimizu, M. et al. (2016). Desirable Information of Opioids for Families of Patient with Terminal Cancer: The Bereaved Family Members’ Experiences and Recommendations. American Journal of Hospice & Palliative Medicine, 1(6).
Perron, V., Schonwetter, R. Assessment and Management of Pain in Palliative Care Patients. Cancer Control: Journal of the Moffitt Cancer Center. 2001;8(1). Available at http://www.medscape.com/viewarticle/409025.
Porter, J., Jick H. Addiction rare in patients being treated with narcottics. N Engl J Med. 1980;302:123.
Wallace, E.M., Cooney, M.C., Walsh, K., Conroy, M., & Twomey, F. (2012). Why do Palliative Care Patients Present to the Emergency Department? Avoidable or Unavoidable? American Journal of Hospice and Palliative Medicine, 30(3), 253-256.
Allie Gips, MD
Ali Jaworski, MD
Emily Zametkin, MBBS
Alex Sheng, MD
Jordan Spector, MD