As hospitalists, we often care for patients who are nearing the end of life. For terminally ill patients, life-sustaining therapies such as mechanical ventilation or artificial nutrition are generally no longer indicated. Such interventions may even cause additional discomfort or prolong the dying process. Our responsibilities as clinicians are two-fold. First, how do we discuss these difficult issues with patients and family members? Second, how do we help patients transition from life-sustaining therapies to comfort-focused care?
II. Identify the Goal Behavior
Hospitalists play a key role in end-of-life care. Patients and families often need guidance as the focus of care shifts towards comfort. We can help by providing accurate information about prognosis and developing a treatment plan that reflects the patient’s priorities and goals.
These goals may include spending time with family, maximizing comfort, and returning home.
Life-sustaining therapies may need to be discontinued. Hospitalists should be skilled in facilitating these changes and preparing patients and loved ones for the dying process. It is important to emphasize that care is not simply “withdrawn.” Certain interventions may be discontinued, but additional medications and therapies will be added as needed to ensure comfort.
III. Describe a Step-by-Step approach/method to this problem.
Essential components in end-of-life decisions include the following:
A. Discuss the patient’s understanding of illness and overall goals of care. Note that code status is just one component of this discussion and not the primary objective of the conversation. See below for further discussion.
B. Discuss the role of specific therapies and consider discontinuing treatments that do not add to comfort such as:
Implantable cardioverter-defibrillator (ICD)
Fingerstick glucose monitoring
C. Discontinue medications that do not add to comfort. Examples include cholesterol-lowering agents and heparin injections. Some medications, such as nodal blockers, may be continued if a patient is prone to tachyarrythmias that may cause dyspnea or chest pain.
D. Add medications as needed to ensure comfort, including opioids for pain and dyspnea, benzodiazepines for anxiety, antipsychotics for delirium, anticholinergics for secretions.
E. Prioritize the psychosocial needs of both patient and family during this difficult time. Communicate regularly with the patient, family, and nursing staff. Involve palliative care, social work, or chaplaincy if needed for additional support.
F. Consider patient and family preferences for location of care. If a transition to home or facility is desired and seems realistic, notify the case manager early to begin planning.
UNDERSTANDING OF ILLNESS AND GOALS OF CARE
As hospitalists, we frequently see seriously ill patients who are nearing the end of life and unlikely to survive a resuscitation attempt. In our busy day-to-day responsibilities, it may be tempting to initiate a goals of care conversation with the hope of “getting the DNR (do not resuscitate).” However, these discussions should really take place in the wider context of a conversation about the patient’s (or loved one’s) understanding of the current illness and the overall goals of care.
One common pitfall is to initiate these discussions with a series of choices. If your heart were to stop or you were unable to breathe, would you want us to start cardiopulmonary resuscitation (CPR) and put a breathing tube down your mouth to help you breathe? How about shocks if you were in a lethal rhythm? Or medications to help your blood pressure if it were to drop?
Experts in communication and end-of-life care universally advise against this “menu” approach. It is more effective to approach these discussions with a communication framework in mind:
Clarify which individuals should be involved in these conversations (patient, health care proxy).
Determine whether there are specific preferences for decision-making (e.g., some patients may wish to avoid hearing details of their illness and choose to defer decision-making to a loved one).
Elicit patient’s/proxy’s understanding of illness.
Provide accurate information about patient’s condition, prognosis, and treatment options.
Elicit patient values, goals, priorities. Issues to explore may include perception of quality of life, what they hope to be able to achieve or maintain (e.g., level of alertness, independence), what conditions they might find unacceptable (e.g., unable to interact with loved ones), specific concerns and fears.
Recommend a plan of care that will most likely help the patient achieve his or her primary goals. Discuss treatments that can help the patient (e.g., managing fluid overload and dyspnea with medications) as well as interventions that are unlikely to be successful or even harmful (e.g., CPR).
This model of shared decision making assumes that the patient/decision-maker and the clinician are each experts in different aspects of the decision. The patient and family play a key role in identifying the patient’s personal values and priorities. The clinician provides expertise in the clinical picture and helps integrate the patient’s values into a plan of care.
Questions to consider
Have you appointed a health care proxy or surrogate decision maker? If so, have you previously discussed what your wishes would be if you were to fall ill and could not answer questions for yourself? It is crucial to include the surrogate decision maker in these decisions so that the patient’s wishes are in fact honored at the time of a medical crisis.
What do you understand about your (or loved one’s) illness? What are your expectations of the upcoming days/weeks/months? It is important to ensure that the patient and family have accurate information about the medical condition.
When you consider the current situation as well as the future, what is most important to you (or loved one)? This may include factors like living situation, spending time with family in a particular setting, returning to the hospital or avoiding rehospitalization, and functional status.
What do you understand about CPR and the resuscitation process? For many individuals, their only exposure to CPR is via television. One study found that television shows depicted a CPR success rate of 75%, and a 67% rate of successful discharge to home. It is important to correct these widespread misconceptions about the efficacy of CPR.
If you were to undergo CPR and survive, would this be an acceptable condition? For the great majority of patients who survive a resuscitation attempt, the future will likely include prolonged or permanent disability and dependency. While this is acceptable to some individuals, others would like to avoid this possibility if given a choice.
When a decision is made to transition to comfort-focused care, mechanical ventilation is often discontinued to allow a natural death process. Many hospitals have specific guidelines or policies for removal of mechanical ventilation, and it is important to consult these guidelines in advance. (Note that mechanical ventilation and endotracheal tube does not have to be discontinued in certain cases, such as when a patient is expected to die very quickly following the removal of inotropic support.)
Prior to discontinuation of mechanical ventilation:
Document what was discussed in the family meeting and document the decision to discontinue mechanical ventilation.
Discontinue paralytics and confirm the return of neuromuscular function (train of four).
Turn off alarms and monitors in the patient’s room.
Order comfort medications (such as opioids and anxiolytics) well in advance and ensure that medication is at the bedside in case immediate symptom relief is needed.
Consider who will be present at the time of extubation. Family members may choose to step outside briefly for the extubation.
Consider social work and chaplaincy support for loved ones.
The method of ventilator withdrawal will depend on several factors including the patient’s clinical picture, family preference, comfort, and clinician judgment.
Immediate extubation: mechanical ventilation and endotracheal tube are removed in one step, and comfort medications are given as needed. This method works well for patients who have a low volume of secretions and intact airway.
Terminal weaning: ventilator settings (rate, positive end-expiratory pressure (PEEP), oxygen) are reduced stepwise every few minutes while comfort medications are administered for any signs of respiratory distress. After ventilator support has been weaned, the endotracheal tube can be removed or attached to a T-piece in certain instances (when airway compromise is anticipated, such as in head and neck cancers or patients with no gag reflex).
Following ventilator withdrawal, the patient can be placed on room air or humidified air for comfort. Symptoms of dyspnea or tachypnea should be treated with opioids and anxiolytics as needed. Supplemental oxygen can be considered in patients who report dyspnea unrelieved by opioids. For patients who are obtunded or for patients who are otherwise comfortable, oxygen is generally not necessary and may inadvertently prolong the dying process.
Below are some reasonable starting doses. The exact dose needed will depend on several factors, including whether the patient is opioid naive versus tolerant, the degree of respiratory distress, and any underlying anxiety or delirium. Keep in mind that in the setting of acute symptoms, boluses will be more effective than titration of an infusion alone, as any changes in the infusion rate will take many hours to reach a new steady state.
Opioids (pain, dyspnea)
Morphine 2-10 milligrams (mg) intravenously (IV) every 15 minutes as needed (PRN)
Hydromorphone 0.5-2 mg IV every 15 minutes PRN
Fentanyl 25-100 micrograms (mcg) IV every 5 minutes PRN
An opioid infusion can be considered if a patient requires frequent bolus doses of opioids to maintain comfort. Infusion rate can be determined by the patient’s needs in the prior day or shift. There should still be an active order for bolus doses as needed for rapid relief of any breakthrough symptoms.
Lorazepam 0.5-2 mg oral (PO)/IV/sublingual (SL) every 2 hours PRN
Midazolam 1-3 mg IV every 1 hour PRN
Antipsychotics (delirium, restlessness)
Haloperidol 0.5-2 mg PO/IV/subcutaneous (SQ) every 4 hours PRN
Olanzapine 2.5-5 mg PO/SL every 4 hours PRN
Chlorpromazine 25-50 mg PO/IV every 4 hours PRN
(Note: chlorpromazine is one of the more sedating antipsychotics. This may be a desired side effect in certain circumstances, such as when a patient is very agitated.)
Exact anticholinergic agent available will depend on institution, check with pharmacy. Common options include:
Hyoscyamine 0.125-0.25 mg SL every 6 hours PRN
Glycopyrrolate 0.1-0.2 mg IV every 6 hours PRN
Atropine 1% ophthalmic solution 1-2 drops sublingual every 2 hours PRN
Scopolamine transdermal patch every 72 hours
Anticholinergic agents for secretions (“death rattle”) are often only partially effective. Another strategy is to reposition the patient to the side to facilitate drainage of oral secretions. It is also important to educate family members in advance that changes in respiration, including the “death rattle,” Cheyne-Stokes breathing, and apnea, are an expected part of the dying process. Patients are typically obtunded at this stage, and it may be helpful to assure loved ones that the patient is not conscious or suffering.
CARDIAC DEVICES: ICDS AND PACEMAKERS
Implantable cardioverter-defibrillators (ICDs) are widely used to prevent sudden cardiac death in patients with low ejection fraction and/or history of life-threatening tachyarrhythmia. In patients with a life-limiting or terminal disease, it is important to reevaluate the role of an ICD and consider whether deactivation is appropriate. Defibrillator shocks can adversely affect quality of life due to both physical pain and psychological stress.
Indications for deactivating an ICD include any of the following:
Patient and/or surrogate have decided on a do-not-resuscitate (DNR) status
Goals of care are focused on comfort and minimizing symptoms rather than on prolonging life
Patient is imminently dying
If possible, this discussion should include providers that have had a long-standing relationship with the patient, such as a primary care provider or primary cardiologist. In an urgent situation, such as when a patient is imminently dying and an ICD remains active, the device can be disabled by placing a donut magnet over the generator. These magnets should be readily available in emergency department (ED) and intensive care unit settings.
An ICD has the capacity to function independently as a pacemaker, and generally there is no need to discontinue the pacemaker function even in the dying patient. This also applies to standard pacemakers without the defibrillator function. If patients or family members express concern that a pacemaker might prolong the dying process, it is important to explain that a pacemaker is not a resuscitative device and generally does not keep patients alive longer. Death comes naturally from other processes, including metabolic/electrolyte abnormalities, hypotension, hypoxia, and fatal arrhythmia.
For dialysis patients, it is important to consider whether renal replacement therapy is achieving its intended goals of prolonging and maintaining a certain quality of life.
It may be appropriate to stop dialysis if:
Death is expected in the near future and dialysis seems to be prolonging the dying process, rather than maintaining an acceptable quality of life.
The burdens of dialysis, such as serious and recurrent medical complications, outweigh the potential benefit of prolonging life.
Quality of life has deteriorated to the point that prolonging life is no longer desirable based on the patient’s overall values.
There is general consensus amongst ethical and legal experts that stopping dialysis is an acceptable decision in the above circumstances. In fact, discontinuation of dialysis is an increasingly common cause of death among chronic dialysis patients. In the United States, dialysis is stopped in approximately one in five patients with end-stage renal disease prior to death. Observational studies have shown that the dying process for most patients is relatively comfortable, with progressive decline in consciousness from uremia. In one multicenter study of 131 patients who died after cessation of dialysis, mean survival was 8 days from the time of last dialysis. Five patients lived between 30-46 days.
Potential symptoms that may arise after dialysis is discontinued:
Decreased appetite: patients should be allowed to eat as much or as little as desired for comfort or pleasure. Family members may need education that eating is not important at this stage, and their loved one is not dying from a lack of nutrition.
Volume overload: intravenous fluids are discouraged and any symptoms of dyspnea should be treated with opioids and anxiolytics as needed.
Delirium: signs of restlessness or agitation may be treated with antipsychotics if needed, such as haloperidol or olanzapine. However, most patients will experience a progressive decline in alertness, followed by somnolence and obtundation.
Patients and loved ones may ask about artificial nutrition near the end of life. Many experience tremendous emotional distress and fear that the patient will “starve to death.” However, for the vast majority of patients, including those with advanced cancer or dementia, artificial nutrition does not improve survival or quality of life.
Hospitalists can play a key role in educating patients and family members. Although families may worry that their loved one will experience hunger, patients rarely report hunger in the final stage of life, and some may live comfortably for weeks with minimal food and water. Forcing patients to eat may also cause emotional distress, nausea, and aspiration. It is important to point out that artificial nutrition and hydration may even cause unintended complications such as infection, aspiration, and volume overload.
Often family members who appear “overly” focused on nutritional intake are simply grasping for ways to nurture their loved one at the bedside. Clinicians can help family members redirect their efforts in ways that are helpful to the patient’s comfort. Patients may still enjoy small tastes of food as long as they are not pushed to a specific amount of intake. Even those previously deemed “aspiration risks” may have their diet liberalized, as long as they are not having any obvious signs of discomfort from aspiration. Thirst is a common complaint at the end of life (interestingly, this is unaffected by intravenous fluids). Family members can assist in moistening the patient’s mouth with swabs or providing ice chips. Small sips of fluid can be offered to those who are still alert and able to tolerate oral intake. Finally, family members should be encouraged to interact with their loved one through other means including touch, conversation, reading, and music.
IV. Common Pitfalls.
Don’t present the code status discussion as a “menu” of options. “If you were so sick that you were not able to breathe on your own, would you want us to help you breathe by putting a tube down your throat? How about CPR? And would you like medicines to help your blood pressure if it were to drop?” What reasonable person would not say “yes” when told there is something additional that could “help” them? We should be careful not to imply that every intervention is an equivalent choice on a menu of options, particularly when certain therapies are unlikely to be beneficial. It is vital that we first assess the patient’s understanding of his or her illness and discuss the potential outcomes of resuscitation before making a code status decision.
Don’t panic when asked about prognosis. Many clinicians worry they are ill-equipped to answer this question. However, what is most helpful for patients and family members may not be an exact prognosis. Sometimes general descriptions (hours to days, days to a few weeks, weeks to a few months) are what individuals need to be able to make some critical decisions. Should I take a leave of absence from work now or later? Should all the siblings mobilize soon to take mom home? Will dad make it to my wedding or should I move the date up? Is there time for me to fly back to my home country before I die?
Consider asking some of the following questions to better elucidate how you can help:
What are you most concerned about at this time?
How would information on prognosis help you and your family?
Would you do anything differently if you knew that time was short?
Don’t try to do everything alone. Sometimes patients and family members will continue to have great difficulty accepting or coping with terminal illness despite our best efforts. In particularly challenging cases, seek the help of additional colleagues, such as social work, chaplaincy, or palliative care. Remember also that some individuals will continue to struggle under these circumstances despite your best efforts.
V. National Standards, Core Indicators and Quality Measures.
The Society of Hospital Medicine has published a section on palliative care in “The Core Competencies in Hospital Medicine, A Framework For Curriculum Development”, which appears in a Supplement to the Journal of Hospital Medicine, Volume 1, Supplement 1 2006. This provides a full list of core competencies in palliative care. Those directly related to this discussion include:
Knowledge: assess the impact of interventions including feeding tubes, parenteral nutrition, mechanical ventilation, and intravenous fluids on patient comfort and prognosis.
Skills: conduct effective and compassionate family meetings; communicate effectively with patients and families about patient’s values and goals of care; assess and respond to patient’s symptoms.
Attitudes: convey diagnosis, prognosis, treatment, and support options available for patients and families in a clear, concise, compassionate, culturally sensitive and timely manner; determine patient and family understanding of severity of illness, prognosis and their role in determining the goals of their care.
The Joint Commission has also launched an Advanced Certification in Palliative Care Program. Joint Commission accredited hospitals are eligible to apply for the advanced certification. Key components include a formal, organized palliative care program led by an interdisciplinary team, leadership support of the program’s goals, a special focus on patient and family engagement, processes which support coordination of care and communication across care settings and providers, and the use of evidence-based national guidelines or expert consensus to guide patient care.
The certification standards were built on The National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care and the National Quality Forum’s National Framework and Preferred Practices for Palliative and Hospice Care Quality
VI. What’s the evidence?
References and Additional Reading
Back, A, Arnold, R, Tulsky, J. “Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope”. 2009.
Blinderman, CD, Billings, JA. “Comfort Care for Patients Dying in the Hospital”. N Engl J Med. vol. 373. 2015. pp. 2549-2561.
Cohen, LM, Germain, MJ, Poppel, DM. “Practical considerations in dialysis withdrawal: "to have that option is a blessing"”. JAMA. vol. 289. 2003. pp. 2113-9.
Cohen, LM, Germain, MJ, Poppel, DM, Woods, AL, Pekow, PS, Kjellstrand, CM. “Dying well after discontinuing the life-support treatment of dialysis”. Arch Intern Med. vol. 160. 2000. pp. 2513-8.
“The core competencies in hospital medicine: a framework for curriculum development by the society of hospital medicine”. J Hosp Med. vol. 1. 2006. pp. 2-95.
Diem, SJ, Lantos, JD, Tulsky, JA. “Cardiopulmonary resuscitation on television. Miracles and misinformation”. N Engl J Med. vol. 334. 1996. pp. 1578-82.
Galla, J. “Clinical practice guideline on shared decision-making in the appropriate initiation and withdrawal from dialysis”. J Am Soc Nephrol. vol. 11. 2000. pp. 1340-1342.
Goldstein, N, Morrison, R. “Evidence-Based Practice in Palliative Medicine”. 2013.
Lampert, R, Hayes, DL, Annas, GJ, Farley, MA, Goldstein, NE, Hamilton, RM, Kay, GN, Kramer, DB, Mueller, PS, Padeletti, L, Pozuelo, L, Schoenfeld, MH, Vardas, PE, Wiegand, DL, Zellner, R. “HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy”. Heart Rhythm. vol. 7. 2010. pp. 1008-26.
Meier, DE, Ahronheim, JC, Morris, J, Baskin-Lyons, S, Morrison, RS. “High Short-term Mortality in Hospitalized Patients With Advanced Dementia: Lack of Benefit of Tube Feeding”. Arch Intern Med. vol. 161. 2001. pp. 594-599.
Pantilat, S, Anderson, W, Gonzales, M. “Hospital-Based Palliative Medicine: A Practical, Evidence-Based Approach”. 2015.
Quill, TE, Arnold, R, Back, Al. “Discussing Treatment Preferences With Patients Who Want “Everything””. Ann Int Med. vol. 151. 2009. pp. 345-349.
Troug, RD, Campbell, ML, Curtis, JR, Haas, CE, Luce, JM, Rubenfeld, GD, Rushton, CH, Kaufman, DC. “American Academy of Critical Care Medicine: Recommendation for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine”. Crit Care Med. vol. 36. 2008. pp. 953-963.
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- I. Problem/Challenge.
- II. Identify the Goal Behavior
- III. Describe a Step-by-Step approach/method to this problem.
- UNDERSTANDING OF ILLNESS AND GOALS OF CARE
- Questions to consider
- MECHANICAL VENTILATION
- Ventilator withdrawal
- COMFORT MEDICATIONS
- Opioids (pain, dyspnea)
- Benzodiazepines (anxiety)
- Antipsychotics (delirium, restlessness)
- Anticholinergics (secretions)
- CARDIAC DEVICES: ICDS AND PACEMAKERS
- ARTIFICIAL NUTRITION
- IV. Common Pitfalls.
- V. National Standards, Core Indicators and Quality Measures.
- VI. What’s the evidence?