Palliative Care, Part 2: A How-To Guide

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Editor’s note: This is the second in a two-part series.

Michael is tired. The emergency department (ED) is inconceivably busy. The waiting room census keeps growing by leaps and bounds, while the hospital census remains fixed at capacity. And today, Michael’s desire and efforts to provide the best care — both to his swiftly cycling discharges and numerous pending admissions — are repeatedly met with frustration. He meets his next patient, Emily, who is also tired. But not from a hard day at work. She is tired from battling an aggressive cancer for months, and from an inability to find relief from the constant pain and suffering. Michael wants to provide her with the best care possible, but wonders if he has the time and expertise to do it.

While studies have found that initiating palliative care in the ED can be beneficial in reducing departmental visits and offloading health care expenditures, the reality is that the practical implementation of this can be challenging.1,2 What follows is a short guide to aid in the provision of palliative care within the ED. Included as part of this guide is a list of assessment tools providers can use to identify patients who may benefit from palliative care, symptom-based treatment guidelines, and a discussion on compassionate extubation of the acutely dying patient.

Informal Assessment Tools for Identifying Patients Who Might Benefit from Palliative Care

One method by which providers can rapidly identify patients who might benefit from palliative care treatments is by recognizing various factors or “red flags” that can be associated with increased palliative care needs. These flags can be categorized by symptoms, disease pathology, or signs.

A simpler approach, described in a recently published systematic review of palliative care assessment tools, is a process whereby providers ask themselves 2 simple questions: “Would you be surprised if the patient died within the next year?” and “Would you be surprised if the patient died on this hospital visit?”3 The answer “yes” to either of these questions can indicate
that the patient could benefit from palliative care.

Symptom-based identification comprises recognition of complaints such as dyspnea, pain, fatigue, anorexia, confusion, asthenia, and worry.3-6 The PAIN RULES mnemonic (Figure 1) highlights these and other common red flag symptoms that can be useful to providers as they attempt to identify patients who may benefit from palliative care interventions.

Figure 1. Symptom-Based Identification4

PAIN RULES
Pain
Anorexia and other appetite or oral intake related issues
Incontinence and other genitourinary symptoms
Nausea and other gastrointestinal symptoms (constipation, vomiting, diarrhea)
Respiratory symptoms (dyspnea, cough)
Ulcerations and other skin complaints
Level of functioning
Energy and other related issues such as fatigue or asthenia
Sedation, sleep, and other side effects of treatment

 

Figure 2. Diagnosis-Based Identification5

Neoplasm with widespread metastasis that is unresponsive to treatment
End-stage heart failure
End-stage chronic obstructive lung disease
Advanced dementia
Degenerative neurologic disease
End-stage acquired immunodeficiency syndrome
End-stage renal or hepatic disease
End-stage rheumatologic disease
Multisystem trauma with nonsurvivable injury
Multiorgan failure
Any chronic, progressive, debilitating disease

Clinical assessment or comprehension of ailment pathophysiology and associated prognosis can also be used to identify patients who can benefit from palliative care services. Zalenski and Zimny suggest a comprehensive disease-based list (Figure 2) to facilitate medical provider awareness and rapid identification upon presentation of patients with these diagnoses.4

Certain physical signs are particularly indicative of patients presenting in the acute stages of end of life. Recognizing the presence of these symptoms can be very useful to providers in determining which palliative care interventions may be appropriate for this special subset of patients. Although this assessment may be seemingly straightforward, specific studies have been performed examining patients with malignant disease and have found that the presence of the following specific signs has been associated with increased sensitivity and likelihood of death within a 72-hour period (Figure 3).5,6 Indicators specifically correlating with imminent death include increased drowsiness to awake ratio, increased use of opioids, cyanosis of the extremities, altered respirations with associated mandibular movement, and death rattle.7

Figure 3. Sign-Based Identification in Acutely Dying Patients12,13

Decreased urinary output
Drooping of nasolabial folds
Hyperextension of neck
Decreased responsiveness to verbal and visual stimuli
Inability to close eyelids
Grunting through vocal cords
Respirations with rapid mandibular movement
Presence of nonreactive pupils
Presence of Cheyne-Stokes breathing
Death rattle


Formal Assessment Tools: For the Exceptionally Detail-Oriented

Several formal multi-symptom and functional assessment tools have been developed to assist providers in quantifying symptom severity and identifying individuals who may benefit from palliative care interventions. Tools commonly used include the Brief Pain Inventory (BPI) and the revised Edmonton Symptom Assessment Scale; the latter (along with the Rotterdam Symptom Checklist) has been translated into several languages.

While obtaining data from nonverbal patients can present additional chal­lenges, the Critical Care Pain Observation Tool and Behavioral Pain Scale have been created to help facilitate this.

Other tools useful in assessing functional status and individual needs include the Needs at the End-of-Life Screening Tool (NEST), the Patient-Reported Outcomes Measurement Information System, and the Palliative Performance Scale (PPS).

The Palliative Care and Rapid Emergency Screening (P-CaRES) tool, recently designed specifically for use within the ED, employs a stepwise system to assess whether patients may benefit from referral to palliative care (Figure 4).8,9 The tool assists providers in first assessing the presence of life-limiting illness. If such illness is identified, the tool guides providers in ascertaining unmet palliative care needs.

Figure 4. Brief Description of Palliative Care and Rapid Emergency Screening (P-CaRES) Tool10,11

Step 1 — Does the patient have a life-limiting illness?
Select all that apply and proceed to step 2 if one or more items are checked.
□  Advanced dementia or central nervous system disease
□  Advanced cancer
□  Advanced chronic obstructive pulmonary disease
□  Advanced heart failure
□  End-stage liver disease
□  Septic shock
□  Provider discretion: high chance of accelerated death
Step 2 — Does the patient have two or more unmet palliative care needs?
Select all that apply. If two or more are checked, referral for palliative care is recommended.
□  Frequent visits
□  Uncontrolled symptoms
□  Functional decline
□  Uncertainty about goals-of-care and/or caregiver distress
Would you be surprised if this patient died within 12 months?

 

Treatment Considerations: Advance Directives and Goals of Care

Various challenges exist regarding the possession, availability, and establishment of advance directives. Some researchers have found that only 21% to 46% of geriatric patients presenting to the ED possess written advance directives. Of these, existing advance directives were available to ED staff for only 1% to 44% of these patients.10 These data emphasize the need for providers to be confidently proficient in communicating with patients and family members regarding their goals of care in urgent situations.

Understanding patients’ attitudes regarding quality of life can assist providers in communicating with patients about advance directives and goals of care, and can guide practitioners in making treatment recommendations. Data from studies may prove valuable to health care providers in constructing a framework for conversations about advance directives and goals of care. For example, in response to a survey disseminated to patients aged 60 years and older with limited life expectancy, 74.4% of participants reported they would not prefer treatment if the outcome of the treatment was survival with severe functional impairment; 88.8% of participants reported they would not prefer treatment if the outcome was survival with cognitive impairment.11

Treatment Guidelines: Symptom-Based Recommendations

Because inadequately managed symptoms are among the primary reasons patients seek treatment in the ED at the end of life, it behooves providers to be well versed in the management of these complaints. The following comprise recommendations that can be used to treat and manage symptoms commonly experienced by terminally ill patients.

Dyspnea

Opioid administration is an effective pharmacologic intervention that has been studied extensively for use in managing dyspnea in terminally ill and acutely dying patients. Additional therapies for managing dyspnea include the use of oxygen, fans, and other medications (including benzodiazepines and low-dose ketamine for some patients).12 Intermittent positive pressure ventilation may be useful in treating dyspnea in the appropriate settings if symptoms are severe.13

Pain

While some literature has boasted theoretical synergistic analgesic effects by combining nonopioid medications with opioids, opioids continue to be the primary means of managing pain in terminally ill patients.14-16 Terminally ill patients may benefit from administration of a combination of long- and short-acting analgesics to maintain stable analgesic concentrations and consistently control symptoms. Adjuvant medications that may be used, depending on underlying pathology or concomitant medical conditions, include gabapentinoids, antidepressants, glucocorticoids, or anticholinergics. Medications that may be used in the acute care setting include ketamine and alpha-2 agonists (e.g., dexmedetomidine), both of which have been described in literature on multimodal management of acute pain.17-19

Anxiety

Benzodiazepines are considered the first line of treatment for anxiety-related symptoms; as mentioned previously, they also may be used to alleviate anxiety associated with dyspnea. The choice of benzodiazepine should be dictated by desired time of onset and duration of action. Depending on the clinical situation, the faster onset of a medication such as lorazepam may be advantageous; in other situations, the longer duration of a medication such as midazolam may be optimal. Other agents that may be employed to alleviate anxiety include opioids such as morphine. In acutely dying patients with extreme anxiety that is refractory to these agents, palliative sedation with phenobarbital or propofol may be considered.20

Nausea and vomiting

The sensation of nausea and vomiting is associated with the regulation of serotonin, dopamine, acetylcholine, and histamine; hence, pharmacological interventions are centered around the manipulation of these neurotransmitters. Various antiemetic options include: ondansetron and other serotonin 5-hydro­xytryptamine-3 receptor antagonists; corticosteroids such as dexamethasone; metoclopramide, or dopamine antagonists such as haloperidol or droperidol; anticholinergics such as scopolamine; or antihistamines such as meclizine. These medications may be used in isolation or combination. Other options for controlling nausea include the use of agents such as dronabinol or tetrahydrocannabinol.

Secretions: Death Rattle and Xerostomia

Management of terminal secretions, through use of agents such as scopolamine, atropine, or glycopyrrolate, can be key in minimizing turbulent respirations and death rattle. Although data are limited, glycopyrrolate poses a theoretical benefit in that its structure, unlike that of other medications, does not allow passage through the blood–brain barrier; minimizing the potential for exacerbation of delirium. On the opposite spectrum, terminally ill patients may suffer from xerostomia, which can be treated by utilizing artificial saliva-like solutions, sprays, or gels, or pilocarpine.

Psychosis/Delirium

Antipsychotics are the first-line treatment for psychosis and both spectrums of delirium, and have been shown to be beneficial for terminal patients with various malignant and nonmalignant conditions. Agents such as chlorpromazine or haloperidol (both available in intramuscular forms), or second-generation antipsychotics such as quetiapine, may be used. Although not considered an additional treatment option for the general population, the use of opioids may additionally be utilized for terminally ill patients, particularly in cases in which symptoms may coexist with or be exacerbated by significant pain and associated agitation.

Hydration

Debate exists surrounding the practice of providing intravenous hydration to patients whose death is imminent, and data are mixed.21,22 Despite these mixed data, general recommendations hold that the decision to administer hydration to patients at the end of life should be made based on provider assessment of the potential risks of volume overload and worsening of bronchial secretions with the benefits of hydration.

Constipation

Iatrogenic or disease-induced constipation is a frequent complaint among terminally ill patients and should be considered upon commencement or escalation of opioid analgesic regimens. Stimulant laxatives, such as sennosides or bisacodyl, may be used to treat constipation. Options for osmotic laxatives include lactulose, sorbitol, polyethylene glycol, magnesium hydroxide, and magnesium citrate.

Treatment Guidelines — Compassionate Extubation

When extubation is indicated for patients at the end of life, the removal of ventilators should be done carefully, and extubation should be centered around patient and family values. Prior to withdrawing mechanical ventilation, loved ones should be allowed time with patients whose deaths are imminent.23

In managing extubation of terminally ill patients, providers should individualize treatment to ensure that the clinical situation, the values of the patient, and the patient’s preferences are considered.24 Because of the increased need for aggressive management of the patient’s symptoms after extubation, algorithms to guide the provision of care (as well as the providers administering this care) should allow for adequate preparation for extubation. Such preparation includes ensuring that medications for managing pain, anxiety, and dyspnea are readily available.25

Withdrawal of ventilator support can occur rapidly or via slow titration to allow the patient to adapt to spontaneous breathing upon extubation.26 Providers may experience discomfort or hesitation upon increasing the frequency and dosage of medication post-extubation; however, frequency and dosage of medication should first and foremost be dictated by a patient’s symptoms. Providers should be aware of and potentially prepare families for the possibility of increased respiratory distress caused by:

  1. The patient’s transition to spontaneous ventilation
  2. Soft-tissue upper-airway obstruction
  3. Underlying pathological disease
  4. A combination of the aforementioned

After extubation is complete, providers must continually reassess patients to ensure symptoms are adequately controlled. If symptoms are refractory, providers may consider use of palliative sedation.27

Studies have been performed examin­ing how soon death occurs after the withdrawal of mechanical ventilation. One study found that patients typically die within 0.25 to 5.5 hours of extubation.28 The amount of time between extubation and death has been associated with the number of the patient’s organs involved in multisystem organ failure, requirements for vasopressors or intravenous fluid, and diagnosis on admission.29

Concluding Thoughts

Through this series and the stories of symbolic figures like Emily and Michael, it is our hope that we have demonstrated how the administration of palliative care may be beneficial for patients at the end of life, their medical providers, and the emergency departments to which they present. Although implementing palliative care in the ED may be difficult and challenging due to logistical barriers, it is additionally our hope that providers can use the ideas and recommendations outlined in this article to efficiently administer compassionate care to this significantly prevalent subset of our patients.

References

  1. Henson LA, Gao W, Higginson IJ, et al. Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis. J Clin Oncol. 2015;33(4):370-376.
  2. Smith AK, McCarthy E, Weber E, et al. Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there. Health Aff 2012;31(6):1277-1285.
  3. George N, Phillips E, Zaurova M, Song C, Lamba S, Grudzen C. Palliative care screening and assessment in the emergency department: a systematic review. J Pain Symptom Manage. 2016:51(1):108-19.e2.
  4. Zalenski RJ, Zimny E. Palliative Care. In: Tintinalli JE, Stapczynski J, Ma O, Yealy DM, Meckler GD, Cline DM. eds. Tintinalli’s Emergency Medicine: A Comprehensive Study Guide, 8eNew York, NY: McGraw-Hill; 2016.
  5. Hui D, dos Santos R, Chisholm G, et al. Clinical signs of impending death in cancer patients. Oncologist. 2014;19(6):681-687.
  6. Hui D, Dos Santos R, Chisholm G, Bansal S, Souza Crovador C, Bruera E. Bedside clinical signs associated with impending death in patients with advanced cancer: preliminary findings of a prospective, longitudinal cohort study. Cancer. 2015;121(6):960-967.
  7. Morita A, Ichiki T, Tsunoda J, Inoue S, Chihara S. A prospective study on the dying process in terminally ill cancer patients. Am J Hosp Palliat Care. 1998;15(4):217-222.
  8. George N, Barrett N, McPeake L, Goett R, Anderson K, Baird J. Content validation of a novel screening tool to identify emergency department patients with significant palliative care needs. Acad Emerg Med. 2015;22(7):823-837.
  9. Bowman J, George N, Barrett N, Anderson K, Dove-Maguire K, Baird J. Acceptability and reliability of a novel palliative care screening tool among emergency department providers. Acad Emerg Med. 2016;23(6):694-702.
  10. Oulton J, Rhodes SM, Howe C, Fain MJ, Mohler MJ. Advance directives for older adults in the emergency department: a systematic review. J Palliat Med. 2015;18(6):500-505.
  11. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346:1061.
  12. Shreves A, Pour T. Emergency management of dyspnea in dying patients. Emerg Med Pract. 2013;15(5):1-19.
  13. Cuomo A, Delmastro M, Ceriana P, et al. Noninvasive mechanical ventilation as a palliative treatment of acute respiratory failure in patients with end-stage solid cancer. Palliat Med. 2004;18(7):602-610.
  14. Ong CK, Seymour RA, Lirk P, Merry AF. Combining paracetamol (acetaminophen) with nonsteroidal anti-inflammatory drugs: a qualitative systematic review of analgesic efficacy for acute postoperative pain. Anesth Analg. 2010;110:1170.
  15. Hyllested M, Jones S, Pedersen JL, Kehlet H. Comparative effect of paracetamol, NSAIDs or their combination in postoperative pain management: a qualitative review. Br J Anaesth. 2002;88(2):199-214.
  16. Dahl JB, Nielsen RV, Wetterslev J, et al. Post-operative analgesic effects of paracetamol, NSAIDs, glucocorticoids, gabapentinoids and their combinations: a topical review. Acta Anaesthesiol Scand. 2014;58(10):1165-1181.
  17. Subramaniam K, Subramaniam B, Steinbrook RA. Ketamine as adjuvant analgesic to opiods: a quantitative and qualitative systematic review. Anesth Analg. 2006(99(2):482-495.
  18. De Kock M, Crochet B, Morimont C, Scholtes JL. Intravenous or epidural clonidine for intra- and postoperative analgesia. Anesthesiology. 1993;79(3):525-531.
  19. Lin H, Faraklas I, Sampson C, Saffle JR, Cochran A. Use of dexmedetomidine for sedation in critically ill mechanically ventilated pediatric burn patients. J Burn Care Res. 2011;32(1):98-103.
  20. McWilliams K, Keeley PW, Waterhouse ET. Propofol for terminal sedation in palliative care: a systematic review. J Palliat Med. 2010;13(1):73-76.
  21. Bruera E, Hui D, Dalal S et al. Parenteral hydration in patients with advanced cancer:a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol. 2013;31(1):111-118.
  22. Nakajima N, Hata Y, Kusumuto K. A clinical study on the influence of hydration volume on the signs of terminally ill cancer patients with abdominal malignancies. J Palliat Med. 2013;16(2):185-189.
  23. White DB. Withholding and withdrawing ventilatory support in adults in the intensive care unit. UpToDate. http://www.uptodate.com/contents/withholding-and-withdrawing-ventilatory-support-in-adults-in-the-intensive-care-unit. Updated June 24, 2016. Accessed September 26, 2016.
  24. White DB. Withholding and withdrawing ventilatory support in adults in the intensive care unit. UpToDate. http://www.uptodate.com/contents/withholding-and-withdrawing-ventilatory-support-in-adults-in-the-intensive-care-unit. Updated June 24, 2016. Accessed September 26, 2016.
  25. White DB. Withholding and withdrawing ventilatory support in adults in the intensive care unit. UpToDate. http://www.uptodate.com/contents/withholding-and-withdrawing-ventilatory-support-in-adults-in-the-intensive-care-unit. Updated June 24, 2016. Accessed September 26, 2016.
  26. White DB. Withholding and withdrawing ventilatory support in adults in the intensive care unit. UpToDate. http://www.uptodate.com/contents/withholding-and-withdrawing-ventilatory-support-in-adults-in-the-intensive-care-unit. Updated June 24, 2016. Accessed September 26, 2016.
  27. Cherny N. Palliative sedation. UpToDate. http://www.uptodate.com/contents/palliative-sedation?source=see_link&sectionName=INDICATIONS&anchor=H21551878#H21551878. Updated June 1, 2016. Accessed September 26, 2016.
  28. Cooke CR, Hotchkin DL, Engelberg RA, Rubinson L, Curtis JR. Predictors of time to death after terminal withdrawal of mechanical ventilation in the ICU. Chest. 2010;138(2):289-297.
  29. Cooke CR, Hotchkin DL, Engelberg RA, Rubinson L, Curtis JR. Predictors of time to death after terminal withdrawal of mechanical ventilation in the ICU. Chest. 2010;138(2):289-297.
Christina Creel-Bulos, RN-BSN, MD

Christina Creel-Bulos, RN-BSN, MD

Emergency Medicine Resident, Washington University in St. Louis, St. Louis, MO
Christina Creel-Bulos, RN-BSN, MD

Latest posts by Christina Creel-Bulos, RN-BSN, MD (see all)

Laura E. Creel, MA

Laura E. Creel, MA

Manager of Academic Support Services, Florida International University Wertheim College of Medicine, Miami, FL
Laura E. Creel, MA

Latest posts by Laura E. Creel, MA (see all)

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