Authors: Taylor Douglas; Naomi Rebollo Rodriguez
Edited by: Nicole Anthony; Wesley Chan
Many patients present to the Emergency Department (ED) with the chief complaint of shortness of breath. There are myriad causes and extensive treatments available. However, what about the patient who has dyspnea because they have a terminal illness or is in the active stage of dying? They may come in due to unmanageable symptoms, family distress, or lack of outpatient support. What can be offered to these patients in the ED setting?
Goals of Care
Ask patients and their family about which documents have been completed and which previous discussions have taken place that convey the patient’s preferences in the event that they are unable to communicate.
Common advance directive documents include:
– Physician/medical orders for life-sustaining treatment (POLST/MOLST)
– Do not resuscitate (DNR) order
– Do not intubate (DNI) order
– Living will
– Durable healthcare power-of-attorney (POA)
– Health Care Proxy (HCP)
It is important to understand who is making decisions (patient, surrogate, or one of the above legal decision makers) before completing the appropriate paperwork. All patients can and should designate an HCP to make decisions for them if/when they are unable. This designation does not go into effect until they are determined to be unable to make decisions for themselves and can be completed in any setting (clinic, ED, hospital). A medical POA is a similar designation. If a surrogate states they are the HCP and/or POA, copies of the forms should be added to the medical record as soon as possible.
If none of the above documentation is available, start the conversation in the ED with the patient and/or their healthcare surrogate. It is important to normalize the conversation and make everyone understand that it is common for you as a healthcare provider. Ask what they understand about their condition, what is important for them, and what they are hoping for. In general, it is helpful to determine if quantity vs quality of life is the goal of their treatment. It is also important to stop here if it is clear that the patient’s and/or their family’s understanding and expectations are completely disparate from their diagnosis or prognosis. Further conversations can occur at a later date/time during the inpatient stay. In the ED, however, the appropriate next step is to proceed with routine care at this time.
Never ask “Do you want everything done?” as no one has any idea what “everything” truly entails. This can make surrogates feel that they are withholding care from their loved one. If a patient volunteers that they want everything done, ask them what that means to them and use this as an entry into a further conversation about their goals.
Based on the discussion of the patient’s goals and expectations, provide the option of a comfortable, natural death, free from machines, when appropriate, as an alternative to more invasive interventions. However, do not feel obligated to prognosticate; instead, discuss concerns about limited life expectancy or the medical futility of certain interventions.
Discuss the risks and benefits of intubation and cardiac resuscitation like you would with any other procedure. Explain that in a chronically ill patient, extubation might not ever be possible. Make families aware of the role of CPR in chronically ill and debilitated patients and how CPR will not reverse or have any effect on the underlying pathology. Make families aware that if the patient were to survive CPR and intubation, they will have a different, more debilitated baseline after recovery and will likely be dependent to perform ADLs.[11]
Remember that surrogates and/or proxies should be guided by the patient’s previously expressed wishes OR substituted judgment, so ask them to try to determine what decision the patient would make if he/she were able.
History and Physical Exam
Ask the patient and/or surrogates about the patient’s prior level of function (ability to perform ADLs) and any recent changes. Additionally, assess for symptoms of dysphagia, dry mouth, anorexia, as well as drowsiness, somnolence, and cognitive impairment. These questions are helpful to identify the rate of decline and determine what interventions will be appropriate (e.g. oral vs intravenous medication). Ask which medications are being used to manage symptoms at home, whether they have been effective, and which side effects have occurred.
Methods to assess dyspnea
Ask the patient, family, and/or caregivers to describe the symptoms of dyspnea that they experience or observe. A simple 0 to 10 scale (similar to that of the commonly used pain scale) can be employed in an alert and participatory patient. Focus on breathing patterns, gasping, or labored breathing. Involve the caregivers, especially if the patient cannot express their symptoms. Include nursing colleagues in the assessment as well, as they can assist with determining if interventions have been effective.
Figure 1. Nonverbal Pain Scale. Table from Kabes et. al.[3]
Figure 2. Pain Assessment in Advanced Dementia (PAINAD) Scale. Scored 0 to 2 (from left to right). Table from Lane et al.[4]
Management
Once goals of care have been established and history and physical exam completed, make recommendations to the patient and/or surrogate based on their identified philosophy of treatment. Treatment should be based on goals of care, not prognosis. In most patients, a symptom-focused approach will be most appropriate. However, some patients and their surrogates may choose a problem-based approach instead. Guided by the goals-of-care discussions, order diagnostic studies to identify any abnormalities for which the patient would want treatment for (e.g. transfusion for anemia or thoracentesis for pleural effusion). If symptom-focused treatment is preferred, deescalate interventions and consider discontinuing unnecessary monitoring (e.g. pulse oximetry and/or cardiac telemetry).
Figure 3. Flowchart to demonstrate when usual care is appropriate.
If a patient is already enrolled in hospice, contact the facility early as they can be a helpful resource. Hospice servicers have a 24-hour line that can put you in contact with an RN or doctor on call. They should be aware that the patient has had to seek emergency care, however, due to the circumstances, the patient or surrogate may not have been able to notify them.
Multiple pharmacologic and non-pharmacologic interventions can be used to manage a patient’s dyspnea. Mainstays of treatment include opioids and supplemental oxygen. Benzodiazepines (such as lorazepam) should only be used if anxiety is suspected as a major contributor. Environmental modifications include handheld fans directed at the patient’s face, frequent suctioning and repositioning, and involvement of social work and chaplain services, if available.
In addition to treating pain, opioids are thought to suppress the patient’s awareness of their shortness of breath.[8,10] They do not hasten death when dosed correctly.[7] The best dosing method is to start low and increase slowly. There are no ceiling doses for these oral and intravenous medications, so doses should be increased until comfort is achieved.[7] Hold parameters should always be placed; some suggestions include respiratory rate < 8/min, systolic BP < 80 mm Hg, and/or patient or family refusal.
Recommended initial doses and titrations:
Opioid-naive starting doses:
– 1-2 mg morphine IV
– 0.1-0.2 mg hydromorphone IV
– 12.5-25 mcg fentanyl IV
1. Opioid tolerant – 10% of total daily opioid dose
2. Reassess and re-dose every 10 minutes
3. Titrate in 25-50% increments
4. Consider continuous infusion once a good response has been achieved
A trial of oxygen by nasal cannula is appropriate in any patient with dyspnea. However, it should be discontinued if burdensome to the patient and/or ineffective. Non-invasive positive pressure ventilation (NIPPV) and high-flow nasal cannula (HFNC) can be considered if in line with goals of care. Of the two, HFNC is preferred as it allows for comfort, communication, and oral feeding/medications. It is important to know and to share with patients and surrogates that patients at the end-of-life requiring HFNC have high mortality and may require inpatient hospice in the event that it is not available in the outpatient setting – this is often the case.
Another important consideration is the management of secretions. Although the appearance and sounds of secretions can be extremely distressing to surrogates and caregivers, secretions are not necessarily indicative of patient discomfort. Repositioning and suctioning should always be tried first. If medications are required or requested, multiple options exist:
– Atropine 1% ophthalmic solution, 1-2 drops orally every 2-4 hours
– Atropine 0.2-0.4 mg IV every 2-4 hours
– Glycopyrrolate 0.2 mg parenteral every 6 hours (takes 6-8 hours to act, can start in the ED for future benefit)
– Scopolamine patch transdermal (takes 6-8 hours to act, consider if IV access lost)
For all patients at the end of life, including those without dyspnea, involve patient relations to ensure visitors can be present with the patient. Loosening visitor restrictions and providing a physical space in which visitors can wait nearby are simple modifications that allow greater comfort for the patient and their visitors.
Disposition
There are many options depending on the patient’s goals of care and medical needs. Patients and their surrogates may not be prepared to make a decision on disposition while in the ED. When available, palliative care should be consulted to assist with disposition decisions. Additionally, social work should be engaged to initiate the conversation and answer any questions. Discharge from the ED can be considered in patients who qualify for home hospice, have good medical and social support, and have achieved symptom control in the ED. For all other patients, inpatient admission or observation stay is appropriate to further control symptoms and/or explore other disposition options such as inpatient hospice or subacute nursing facility with hospice capabilities.
References
1. Bailey, C., Murphy, R., & Porock, D. (2011). Trajectories of end-of-life care in the emergency department. Annals of Emergency Medicine, 57(4), 362–369. https://doi.org/10.1016/j.annemergmed.2010.10.010
2. Currow, D.C., Smith, J., Davidson, P.M., Newton, P.J., Agar, M.R., & Abernethy, A.P. (2010). Do the Trajectories of Dyspnea Differ in Prevalence and Intensity By Diagnosis at the End of Life? A Consecutive Cohort Study. Journal of Pain and Symptom Management, 39(4), 680–690. https://doi.org/10.1016/j.jpainsymman.2009.09.017
3. Kabes, A.M., Graves, J.K., & Norris, J. (2009). Further validation of the nonverbal pain scale in intensive care patients. Critical care nurse, 29(1), 59-66. https://doi.org/10.4037/ccn2009992
4. Lane, P., Kuntupis, M., MacDonald, S., McCarthy, P., Panke, J., Warden, V., & Volicer, L. (2003). A pain assessment tool for people with advanced Alzheimer’s and other progressive dementias. Home healthcare nurse. 21, 32-7. https://doi.org/10.1097/00004045-200301000-00007
5. NCI Dictionary of Cancer terms. National Cancer Institute. Retrieved June 24, 2022, from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/death-rattle
6. Odhner, M., Wegman, D., Freeland, N., Steinmetz, A., & Ingersoll, G. L. (2003). Assessing Pain Control in Nonverbal Critically Ill Adults. Dimensions of Critical Care Nursing, 22(6), 260–267. https://doi.org/10.1097/00003465-200311000-00010
7. Pasternak, G. W. (2007). When it comes to opiates, just say NO. Journal of Clinical Investigation, 117(11), 3185–3187. https://doi.org/10.1172/JCI34035
8. Peiffer, C. (2011). Morphine-induced Relief of Dyspnea: What Are the Mechanisms? American Journal of Respiratory and Critical Care Medicine, 184(8), 867–869. https://doi.org/10.1164/rccm.201108-1436ED
9. Quill, T.E., Arnold, R., & Back, A.L. (2007). Annals of Internal Medicine Perspective. Annals of Internal Medicine, 146(4), 301–306. http://www.annals.org/content/146/4/301.short
10. Shreves, Ashley. Pour, T. (2018). Management of Dyspnea in the Dying Patient. EB Medicine – Emergency Medicine Practice, 20(7), 1–20.
11. van Gijn, M.S., Frijns, D., van de Glind, E.M., van Munster, B., & Hamaker, M.E. (2014). The chance of survival and the functional outcome after in-hospital cardiopulmonary resuscitation in older people: a systematic review. Age Ageing. 43(4), 456-463. doi:10.1093/ageing/afu035
12. Warden, V., Hurley, A.C., & Volicer, L. (2003). Development and Psychometric Evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. Journal of the American Medical Directors Association, 4(1), 9–15. https://doi.org/10.1097/00130535-200301000-00002
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