Print
E-mail
Reprint

How to walk a dying patient and their family through an unimpeded natural death in the emergency department  

Mr. B presented to the ED acutely septic, likely secondary to an underlying pneumonia. He had advanced dementia and was functionally and cognitively declining at home. His recent life had been punctuated by trips back and forth to the hospital, as he succumbed to the repeated infections typical and expected in the final stages of dementia. We were able to contextualize this acute episode for the patient’s son. He was informed that all of these changes signaled that his father was indeed approaching the end of his life. As he shared personal information about his father, it became clear that attempting to artificially prolong his father’s life in his current condition would not be acceptable to him and that his father would choose a care plan that prioritized his comfort and quality rather than quantity of life.

Prior to the Goals of Care (GOC) discussion with the son, Mr. B was an acutely septic patient with a relatively straightforward treatment plan. In many ways, the discussion made him a more complicated patient, on a road less traveled in the ED: that of the naturally dying patient. Unimpeded natural death is rarely discussed in emergency medicine. And yet, EPs must be able to recognize the symptoms and patterns that are common in the last hours to days of life if they are to provide the high quality EOL care that such patients deserve.

Two Roads to Death
Two major pathways to death have been described: The easy and the difficult road (Figure 1). Depending on the road a patient takes, the intensity of ED management may vary significantly. For instance, some patients are highly symptomatic at the EOL, requiring intravenous medications and even continuous drips to maintain comfort while others can be managed by relatively simple oral regimens in the home setting, with the support of hospice services.

For symptoms like pain, the EM skill set proves sufficient as the management of healthy patients and those at the EOL is similar. EM treatment algorithms are less relevant, however, for symptoms like dehydration, delirium and dyspnea in the dying patient. For this reason, we will focus our attention on the unique approach to these common and often troublesome EOL issues.

1) Dehydration / Poor Oral Intake
Dehydration and poor oral intake are common reasons that patients present to the ED at the EOL1.While reversible causes of decreased oral intake such as thrush or nausea may be identified and treated, anorexia is a normal part of the final common pathway for all dying patients, particularly those with advanced dementia2. While being medically “normal,” a patient’s lack of interest in food can be particularly distressing to caregivers because providing food and nourishment is, in many cultures, a means of expressing love. Accordingly, there are both cognitive and emotional factors that must be addressed when counseling patients and families about anorexia and dehydration at the EOL.

Specific Interventions:
Communication:
a) Empathy: The provider must empathize with this distressing situation. Caregivers are burdened by personal, cultural, and religious mores, a wish to do everything for their loved one, and by a desire to never abandon someone who may have cared for them in a time of need.

b) Reassurance: Caregivers need to know that anorexia in and of itself does not cause distress to patients. It may even be protective by reducing the risk of aspiration and ensuring a comfortable dying process3.

c) Education: Many families and caregivers will inquire about the use of artificial nutrition and hydration (ANH) in their dying loved one. In those patients with dementia, there is a substantial body of evidence to inform the discussion about artificial nutrition (AN). AN does not prolong life, improve patient comfort, or decrease aspiration events4,5. In fact, feeding tubes can contribute to patient suffering by reducing human interaction, increasing the use of mechanical restraints, and prompting repeated ED visits and hospitalizations for complications6,7. In regards to artificial hydration, there is less evidence to guide use of this intervention, so judgment should inform whether a time-limited trial of intravenous fluids meet patient and family goals8.

Medical management: Focus on providing mucosal lubrication. This will relieve patient discomfort while also allowing caregivers to express their love, as an alternative to feeding. Cleaning swabs with artificial saliva for the mouth and artificial tears for the eyes can be used as needed to ensure patient comfort.

2) Dyspnea
Dyspnea, a subjective sensation of breathlessness, is reported by more than 50% of patients in the end stages of conditions like COPD, AIDS, cancer, and dementia9,10. It is distressing for the patient and generally difficult for caregivers to observe. The prevalence and severity both increase in the last 6 months of life11,12. Not surprisingly, it is one of the most common reasons that patients seek care in the ED at the EOL13. Some causes, such as fluid overload, anxiety, pain, and urinary retention are easily modifiable with minimal intervention. For many patients, however, dyspnea marks the final common pathway to death and invasive interventions are not only unhelpful, but burdensome and inappropriate. Fortunately, the symptomatic treatment of dyspnea is fairly consistent and effective across disease types when comfort is the primary goal of care.

Specific Interventions:
Communication:
Experiencing physical suffering at the EOL is a common fear amongst dying patients14. Since dyspnea is a very distressing symptom to patients, emphasize to both patients and families that there are effective treatments available for palliation.

Medical management: Opioids – As EPs generally have less experience administering opiates for acute dyspnea and there is little consensus on appropriate starting doses for dyspnea versus pain, physicians should follow the general rule of “start low and go slow.” In the opiate naïve patient, morphine 1 mg IV (or hydromorphone 0.2 mg IV) can be used as an initial starting dose.  If no effect is seen, the dose should be escalated in a step-wise manner, doubling the dose with repeated administration every 10-15 minutes, until relief is achieved. For opiate-tolerant patients, the common practice is to use 10% of patient’s 24 hour pain regimen for dyspnea15. One randomized trial was performed using 25% of 4 hour pain requirement dose as an initial regimen, which is shown to be effective in terminal cancer patients16. If available, in-house palliative care consultation may benefit to care for such patients.

Caregivers and medical colleagues commonly express concern that opiates may hasten the dying process. In fact, when carefully administered to target symptom relief, multiple studies have demonstrated the safety of opiates in this population. They neither hasten death nor have a significant impact on patient oxygenation17-20.

b) Oxygen – Hypoxia and dyspnea are often unrelated at the EOL. Accordingly, a large randomized trial has demonstrated that oxygen is no better than room air when used to relieve dyspnea in dying patients21. In some patients, however, particularly those with conditions like COPD, oxygen may be a useful palliative intervention. The EP may consider initiating a time-limited trial of supplemental oxygen, presuming the delivery device does not cause significant discomfort for the patient.

c) Fan – Nonpharmacologic agents like bedside fans may also play a role in the management of the acutely dyspneic patient. In a small randomized trial of patients with advanced illness, over half with underlying pulmonary disease, the use of a small, handheld fan significantly lowered the sensation of dyspnea22. While the precise physiological mechanism for this effect remains unclear, given the low cost and simplicity of this intervention, it should be considered, where available.

d) Anticholinergics – At the end of life, many patients lose the ability to tolerate and swallow their oral secretions23. As air passes over these pooled secretions in the posterior pharynx, a sound known as the “death rattle” is often generated. While this noise does not necessarily indicate patient discomfort, it can be distressing to family and friends at the bedside. Various anticholinergic drugs have been studied for their ability to mitigate this issue. The most commonly used agents are glycopyrrolate, atropine and scopolamine. There is little evidence demonstrating their efficacy over placebo24,25.

3) Delirium
Delirium is defined as an “abrupt change and fluctuation in alertness, consciousness, and cognition derived from a medical condition26.” It is the most common neuropsychiatric disorder in terminally ill patients27. As is the case for dyspnea, the prevalence of delirium increases as patients approach the end of life28. The clinical spectrum of delirium ranges from hypoactive (more common, often confused with depression) to hyperactive. Terminal delirium is reversible in 27% to 50% of cases. Nonetheless, terminal delirium portends a poor prognosis, ranging from weeks when reversible to days when irreversible29.  

Specific Interventions:
Communication:
Empathizing with caregivers is the key to a successful clinical encounter. It is incredibly difficult for caregivers to witness acute changes in their loved ones behavior and cognition, often meaning that they are “losing” their family member, prior to the actual death.

Reassure family members that their loved one is not “going crazy” by emphasizing that delirium is a normal part of the dying process in many patients. In addition, specific hallucinations like seeing deceased relatives are particularly common.

Medical management
a) Address reversible etiologies:
In some patients, simple infections like UTIs and electrolyte abnormalities like hypercalcemia can be easily diagnosed and corrected. Organ system failures and hypoxic encephalopathy are generally irreversible or may require invasive treatments in terminal cancer patients.30 While awaiting resolution of the underlying problem, non-pharmacologic management of delirium should be attempted first, if safety permits. Patients should be placed in a quiet, well-lit room with compassionate and consistent attention from their caregivers. These conditions are often unattainable in the ED, but an effort should be made to keep familiar caregivers at the bedside at all times.

b). Pharmacologic treatment:
In patients who are actively dying, particularly those in the last hours to days of life, delirium is often irreversible, so the focus shifts to palliating this symptom, rather than reversing the underlying cause. The American Psychiatric Association recommends parenteral Haloperidol based on limited evidence in terminal AIDS patients with delirium. Starting doses of 0.5 to 1mg IV are typically used in the palliative care setting.31 While antipsychotics are the 1st line agents used to manage terminal delirium, benzodiazepines are often needed in conjunction to relieve severe agitation.

Disposition
While transitions of care at the EOL can be complex, a decision making model that incorporates both patient goals and overall symptom burden can assist emergency physicians in determining an appropriate disposition plan for the dying patient.

1. All Life-Sustaining Care Desired
Hospital Admission and "traditional" care + Palliative Care (PC) Consultation*

2. Comfort + “limited” life-sustaining care desired
Admission to regular medicine inpatient bed versus palliative care unit, with a time-limited trial of interventions like antibiotics or non-invasive positive pressure ventilation. A palliative care consult for those admitted to an inpatient bed will ensure optimum symptom management and goal-oriented patient care.

3. Comfort Care Only
a) Intensive Symptom Management required 4 Admit to palliative care unit or inpatient hospice
or

b) Manageable Symptoms in ED 4 Discharge with Home Hospice** or admit to palliative care unit until home with hospice (or similar) plan can be implemented.

alt



Case conclusion:
You stand at the bedside and give the patient repeated doses of morphine until he appears more comfortable. In total, it took 4 mg of morphine to achieve the desired effect, so you start the patient on a morphine regimen of 4 mg IV every 4 hours. His son asks what you will do to prevent his father from “starving to death” since he is not eating or drinking. You carefully communicate that all patients lose interest in food at the end of life and that this is a normal part of the dying process that is neither painful nor uncomfortable. In inquiring about the patient’s home situation, it becomes apparent that while he has six hours of assistance daily from a home attendant, his son is currently providing the remaining 18 hours of care that his father needs. As it is late in the afternoon, referrals for hospice and additional home care services cannot be arranged quickly enough to allow for the patient to transition home from the ED. Your hospital has recently opened an inpatient palliative care unit so you call the palliative care consultant, who agrees that this patient would be very appropriate for an admission to their unit. They thank you for ensuring that this patient received such high quality EOL care, particularly given how busy you must be managing an emergency department. They assure you that their staff can assume the challenges of disposition planning if the son decides that his father would indeed want to die at home. As it will be some time before the patient can be transported upstairs, your staff moves the patient and son into a private room in the ED. As you leave your shift that evening, you walk by the room and note the patient’s son, sitting by the bedside, holding his father’s hand. You are reminded of the famous Hippocrates quote about our role as physicians, to “cure sometimes, treat often, and comfort always.”

Acknowledgement
We want to extend our appreciation for Drs. Tara Liberman and Bethann Scarborough for their palliative medicine expertise, and Dr. David Marcus for his editorial inputs.

* Hospital-based palliative care service (HBPCS) can provides advanced symptom management at the EOL, in addition to ensuring GOC discussion upon admission. For hospitals with 50 or more beds, the prevalence of HBPCS has increased from 24% in 2000 to more than 52% in 2008. Although there is significant variability among regions, larger hospitals tend to have higher prevalence of HBPCS.32
** This plan will likely require involvement of case managers/social workers to coordinate and implement. The family must be capable of managing the physical, emotional and financial demands associated with caring for a terminally ill patient.

Bibliography

1 Barbera L, Taylor C, Dudgeon D. Why do patients with cancer visit the ED near the end of life? CMAJ 2010;182:563-568.

2 Mitchell SL. A 93-year-old man with advanced dementia and eating problems. JAMA 2007;298:2527-2536.

3 Ganzini L, Goy ER, Miller LL, et al. Nurses' experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med2003;349:359-65.

4 Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia..N Engl J Med. 2000 Jan 20;342(3):206-10.

5 Sampson EL, Candy B, Jones L. Enteral tube feeding. J Am Geriatr Soc for older people with advanced dementia. Cochrane Database of Systematic Reviews 2009, Issue 2. Art. No.: CD007209. DOI: 10.1002/14651858.CD007209.pub2.

6 Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365-1370.

7 Givens JL, Selby K, Goldfeld KS, and Mitchell SL. Hospital transfers of nursing home residents with advanced dementia. J Am Geriatr Soc 2012;60:905-9.

8 Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for palliative care patients. Cochrane Database Syst Rev. 2008 Apr 16;(2):CD006273. doi: 10.1002/14651858.CD006273.pub2.

9 Currow DC, Smith J, Davidson PM, Newton PJ, Agar MR, Abernethy AP. 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. 2010;39(4):680-90.

10 Reuben DB, Mor V. Dyspnea in terminally ill cancer patients. Chest. 1986;89(2):234-6.

11 Solano JP et al. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006;31(1):58.

12 Seow H et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol. 2011;29(9):1151

13 Wallace EM, Walsh J, Conroy M, Cooney MC, Twomey F. Why do Palliative Care Patients Present to the Emergency Department? Avoidable or Unavoidable? American Journal of Hospice and Palliative Medicine. 2012.

14 Steinhauser et al. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. JAMA. 2000;284(19):2476-2482.

15 Gordon-Williams RM and Dickerson AH: The management of pain, In: Oxford Textbook of Palliative Medicine, 4th ed.  Edited by S Kaasa, RK Portenoy, M Fallon. Oxford: Oxford University Press 2010; Chapt 10, pp587-1104.

16 Allard P et al. How effective are supplementary doses of opioids for dyspnea in terminally ill cancer patients? A randomized continuous sequential clinical trial. J Pain Symptom Manage. 199 Apr;17(4)256-65.

17 Morita T, et al. Effects of high dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Sympt Manage. 2001; 21:282-9.

18 Clemens KE, Klaschik E. Symptomatic Therapy of Dyspnea with Strong Opioids and Its Effect on Ventilation in Palliative Care Patients.Journal of Pain and Symptom Management. 2007;33(4):473

19 Clemens KE, Klaschik E. Effect of hydromorphone on ventilation in palliative care patients with dyspnea. Supportive Care in Cancer. 2007;16(1):93-9

20 Clemens KE, Quednau I, Klaschik E. Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: a prospective study. Supportive Care in Cancer. 2008;17(4):367-77.

21 Abernethy AP, McDonald CF, Frith PA, Clark K, Herndon JE, 2nd, Marcello J, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet. 2010;376(9743):784-93.

22 Galbraith S, Fagan P, Perkins P, Lynch A, Booth S. Does the Use of a Handheld Fan Improve Chronic Dyspnea? A Randomized, Controlled, Crossover Trial. Journal of Pain and Symptom Management. 2010;39(5):831-8.

23 Morita T, Ichiki T, Tsunoda J, et al. A prospective study on the dying process in terminally ill cancer patients. Am J Hosp Palliat Med. 1998;15(4):217-222.

24 Wee B, Hillier R. Interventions for noisy breathing in patients near to death. Cochrane Database Syst Rev. 2008(1):CD005177.

25 Wildiers H, Dhaenekint C, Demeulenaere P, et al. Atropine, hyoscine butylbromide, or scopolamine are equally effective for the treatment of death rattle in terminal care.J Pain Symptom Manage. 2009;38(1):124-133.

26 Breitbart W and Alici Y. Agitation and Delirium at the End of Life “We Couldn’t Manage Him”JAMA. 2008;300(24):2898-2910.

27 Pereira J et al. The frequency and clinical course of cognitive impairment in patients with terminal cancer. Cancer. 1997;79(4):835.

28 Lawlor PG et al. Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med. 2000 Mar 27;160(6):786-94.

29 Leonard M et al.  Reversibility of delirium in terminally ill patients and predictors of mortality. Palliative Medicine. 2008 Oct;22(7):848-54.

30 Morita, T et al. Underlying pathologies and their associations with clinical features in terminal delirium of cancer patients. J Pain Symptom Manage. 2001 Dec;22(6):997-1006.

31 Jackson KC, Lipman AG. Drug therapy for delirium in terminally ill patients. Cochrane Database Syst Rev. 2004;(2):CD004770.

32 Goldsmith B et al. Variability in Access to Hospital palliative Care in the United States. J Palliat Med. 2008  Oct;11(8):1094-102.

33 http://epec.net/, accessed February 10th, 2013

34 http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts, accessed February 10th, 2013

35 http://www.capc.org/ipal/ipal-em, accessed February 10th, 2013

 



 

Comments   

# Thank you Mr. BRandall Levin, M.D. 2013-05-08 10:24
Outstanding article. Kudos to Dr Ouchi and Shreves.
You may ask, why am I thanking the patient. I am thanking the patient because he was there for the doctors to be there for him - to be true to their healing spirit in caring and comforting him.
The last lines of the article say it all.
"As you leave your shift that evening, you walk by the room and note the patient’s son, sitting by the bedside, holding his father’s hand. You are reminded of the famous Hippocrates quote about our role as physicians, to “cure sometimes, treat often, and comfort always.”
Thank you for allowing me to be able to connect to my learned competencies and skills, but most importantly to connect to my humanity and inner healing strengths. You have validated that I am in the right profession. I will sleep well tonight
Reply
# MD FACEP FAAHPMDenise Waugh 2013-05-10 22:36
Having struggled for over 25 years to provide technology mixed with the appropriate mix of humanity, I eventually turned to a fellowship in Hospice and Palliative Medicine. It was like a weight had been removed from my shoulders. I regained my zeal for the science and art of medicine. The communication skills and pain and symptom management were much more extensive than what I learned in training or from the school of hard knocks.

I am so excited that young doctors like Dr. Ouchi and Dr. Shreves are embracing Palliative Care principals at such an early point in their careers. It truly gives me hope for the future. I believe staying in contact with our humanity is a HUGE step toward job enjoyment and longevity! Thank you Kei and Ashley!
Reply
# AND vs. CPR: A time for every seasonCharles A. Pilcher MD FACEP 2013-05-13 19:07
I applaud your approach. "Allow Natural Death" (AND) is a far more humane approach than our traditional options in the situation you describe. "Do you want to be coded?" "Do you want us to do CPR if your heart stops?" or even "Do you want to be DNR?" are horribly insensitive questions I have heard.
Some of my most memorable encounters with patients and their families have been advising the terminally ill that they indeed do have the option to "die a natural death." So many are tired of the repeated re-admissions. Having a physician willing to offer a non-invasive natural option removes a huge burden wherein all too many patients feel that their only option is to comply with the plans of their physician and the (often unspoken) expectations of their family.
There is an excellent article published in USA Today back in 2009 that discusses Dr. Ouchi's and Shreve's approach. Follow this link:http://usatoday30.usatoday.com/news/health/2009-03-02-DNR-natural-death_N.htm?csp=34
A superb booklet entitled "Hard Choices for Loving People" is a must-read for any physician dealing with EOL issues. It describes the pros and cons of many of our interventions, as well as the physiology of dying. Written by Chaplain Hank Dunn, it is available on his website, http://hankdunn.com/.
Reply
# This is cura personalis-- thank youSusan Mulroney 2013-05-22 18:57
This is an outstanding guide to EOL care. Every time I take my father to the ER, I worry about these issues, and it's a relief to see clear descriptions of respectful and humane treatment of EOL patients. Thank you. [I'm so gratified to have been part of Dr Ouchi's medical education, and that he and his colleague(s) are doing the best for the patients and their families. Kudos to you both.]
Reply

Add comment

Security code
Refresh

Popular Authors

  • Greg Henry
  • Rick Bukata
  • Mark Plaster
  • Kevin Klauer
  • Jesse Pines
  • David Newman
  • Rich Levitan
  • Ghazala Sharieff
  • Nicholas Genes
  • Jeannette Wolfe
  • William Sullivan
  • Michael Silverman

Earn CME Credit