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Critical Care Nurse. 2008;28: 84-94
Copyright © 2008 by the American Association of Critical-Care Nurses.
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Clinical Article
CE Article

End-of-Life Care in the Critical Care Unit for Patients With Heart Failure

Sue Wingate, RN, PhD, CRNP
Debra Lynn-McHale Wiegand, RN, MBE, PhD, CCRN


Sue Wingate is a cardiology nurse practitioner at Kaiser Permanente Mid-Atlantic States, Silver Spring, Maryland.

Debra Lynn-McHale Wiegand is an assistant professor at the University of Maryland School of Nursing, Baltimore, Maryland and is a staff nurse in the surgical cardiac care unit at Thomas Jefferson University Hospital in Philadelphia, Pennsylvania.

To purchase electronic or print reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809-2273 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.

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To learn more about end-of-life care, read "Providing a ‘Good Death’: Critical Care Nurses’ Suggestions for Improving End-of-Life Care" by Renea L. Beckstrand et al in the American Journal of Critical Care 2006:15:38–45.[Abstract/Free Full Text] Available at www.ajcconline.org.

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Financial Disclosures
None reported.

This article has been designated for CE credit. A closed-book, multiple-choice examination follows this article, which tests your knowledge of the following objectives:

  1. Discuss prognosis and treatment for patients with heart failure
  2. Review topics for end-of-life discussions
  3. Describe end-of-life care including honoring patients’ requests and providing comfort measures

Corresponding author: Sue Wingate, RN, PhD, CRNP, 12434 Galesville Dr, Gaithersburg, MD 20878 (e-mail: sjwingate{at}comcast.net).


More than 5 million persons in the United States have heart failure; among persons more than 65 years old, the incidence is 10 cases per 1000 population.1 Heart failure accounts for more hospitalizations than does any other condition, and the mortality rate is high: 1 in 5 patients dies within 1 year of diagnosis, and approximately 50% die within 5 years of diagnosis.1 Approximately 1 million patients are hospitalized yearly with acute decompensated heart failure (ADHF), and registry data indicate a 4% hospital mortality rate for patients with ADHF who have a primary or secondary diagnosis of heart failure at the time of hospitalization.2 The likelihood of death during ADHF is high, and rehospitalization is significantly greater than for patients who have a similar period of chronic but stable heart failure.3

Most deaths in hospitals in the United States occur in critical care units; 1 in 5 patients admitted to the units dies despite aggressive interventions.4 Most of these deaths involve a decision to stop aggressive treatments.4

In this article, we describe how critical care nurses can help hospitalized patients with advanced heart failure and the patients’ families at the patients’ end of life. We review the prognosis of heart failure and the clinical findings and treatments for ADHF and then discuss what to do when the treatment plan changes, how to have end-of-life discussions with patients and their families, and how to manage signs and symptoms at the end of life in patients with ADHF. Because little specific research is available on caring for patients with heart failure who are facing the end of life in the critical care unit, we used available data and clinical experience with patients with advanced heart failure and general literature on critical care patients facing the end of life.


CASE STUDY

AI, a 72-year-old woman, had had nonischemic cardiomyopathy for 5 years. She also had hypertension, atrial fibrillation, chronic kidney disease, and residual weakness in her left leg from a stroke. She had been admitted to the hospital twice in the past year for acute decompensated heart failure (ADHF). Now she had come to the emergency department because of progressive shortness of breath and dyspnea on exertion, orthopnea, a racing heart beat, ankle swelling, and a weight gain of 5.4 kg (12 lb) in the previous 2 weeks. Her vital signs, diagnostic findings, and medications are listed in the box (right). She had had an implantable cardioverter defibrillator (ICD) inserted 3 years ago because of episodes of ventricular tachycardia. She was married, had no children, and was accompanied by her husband. She does not have an advance directive.


CASE STUDY: FINDINGS AT HOSPITAL ADMISSION
Vital signs
    Blood pressure, mm Hg 88/54
    Heart rate, beats/min 142
    Respirations, number/min 36
    Oxygen saturation on room air, by pulse oximetry, % 85
Electrocardiographic findings Atrial fibrillation
Ventricular rate 142/min
Echocardiographic findings
    Size of left atrium, cm 4.8
    Size of left ventricle, cm 5.6
    Ejection fraction, % 55
    Size of left ventricle Moderate hypertrophy
    Relaxation Impaired
Laboratory tests
    Brain-type natriuretic peptide, pg/mL 2100
    Creatinine, mg/dL 2.4
    Urea nitrogen, mg/dL 55
    Potassium, mEq/L 4.8
    Hemoglobin, g/dL 10.4
    Sodium, mEq/L 130
Medications
    Metoprolol succinate 100 mg/d
    Furosemide 80 mg twice daily
    Lisinopril 20 mg/d
    Felodipine 10 mg/d
    Digoxin 0.125 mg every other day
    Warfarin As directed


SI conversion factors: To convert brain-type natriuretic peptide to ng/L and potassium and sodium to mmol/L, multiply by 1.0; to convert creatinine to µmol/L, multiply by 88.4; to convert urea nitrogen to mmol/L, multiply by 0.357; to convert hemoglobin to g/L, multiply by 10.

 


   Prognosis for Patients With Heart Failure
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Progression of heart failure is difficult to predict.5,6 Patients with heart failure have periods of stability, followed by exacerbations of illness, and then a return to a level slightly lower than the baseline level. As many as 30% to 50% of deaths in patients with heart failure are sudden and death often occurs in patients whose condition is otherwise compensated. Death due to progressive heart failure is usually preceded by severe signs and symptoms, frequent hospitalizations, and persistent clinical deterioration (see FigureGo).


Figure 1
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Figure Comprehensive heart failure care. 1 indicates first episode of heart failure; 2, stabilization; 3, exacerbations; 4, transplant or ventricular assist device; 5, end of life.
Reprinted with permission from Sarah J. Goodlin (copyright holder)

 
In the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments, 1312 patients with heart failure were followed up after discharge from the hospital.5 Among patients given a 50% or less chance of surviving 5 months, 53% were still alive 6 months after discharge, and among those given a 10% or less chance of surviving 6 months, 38% were still alive at 6 months. Lee et al6 developed the Enhanced Feedback for Effective Cardiac Treatment (EFFECT) scoring system for determining the risk for heart failure. The score gives 30-day and 1-year mortality rates based on data available during hospitalization (Table 1Go). The items in the scoring system highlight important determinants of mortality risk in ADHF. Table 2Go lists variables that have been linked to higher mortality in heart failure.69


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Table 1 EFFECT Heart Failure Risk Scoring Systema

 

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Table 2 Variables associated with higher mortality in heart failurea

 
When tools and clinical judgments are used to assess prognosis in a patient with heart failure, the patient’s record should be checked to determine whether he or she (especially any patient with systolic dysfunction) has been treated with appropriate medications, such as diuretics, angiotensin-converting enzyme inhibitors, vasodilators, β-adrenergic blockers, and aldosterone antagonists. Studies2,10 have indicated that these standard therapies are underused in patients with heart failure, and this underuse is a problem because these therapies can improve signs and symptoms and modify the course of the disease. If a patient has not tried standard therapies for which he or she is eligible, a course of these therapies should be instituted and determination made of whether the patient improves or is intolerant of or refractory to them.

At the time of admission to the critical care unit, predicting which patients with ADHF will live and which will die is difficult. Of utmost importance is whether or not a patient responds to treatment. Initial treatments may be unsuccessful, and more advanced ones may be needed.


   Clinical Findings in ADHF
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Most patients hospitalized with ADHF have systemic hypertension, preserved left ventricular ejection fraction, significant volume overload, and a predominance of congestive symptoms (dyspnea, edema). Patients with severely impaired systolic function, reduced blood pressure, and signs and symptoms due to poor end-organ perfusion are less common.10 Preserved ejection fraction cannot be distinguished from reduced ejection fraction on the basis of clinical findings; studies such as echocardiography are necessary.

ADHF is characterized by worsening renal function and persistent neurohormonal activation. Decompensation usually occurs without a fundamental change in underlying cardiac structure or function and often is due to inadequate or incorrect medications or to nonadherence to the treatment plan.10


   Treatment of ADHF
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Clinical trial data on the treatment of patients with ADHF is lacking; current guidelines are based on the best evidence available as well as consensus expert opinion. Treatment goals for patients with ADHF have been established by the Heart Failure Society of America (Table 3Go). Intravenous loop diuretics are used to decrease congestion. If congestion persists without symptomatic hypotension, vasodilators (nitroprusside, nitroglycerin, nesiritide) may be needed. Ultrafiltration may be used for patients refractory to diuretics. Inotropic agents (dobutamine, milrinone) are used to relieve signs and symptoms and improve end-organ function in patients with advanced heart failure, although use of these agents can increase mortality. Some patients may require hemodynamic monitoring to guide therapy. Oxygen is used if patients are hypoxic; patients in severe respiratory distress may require intubation and mechanical ventilation. Patients in cardiogenic shock may require multiple vasoactive agents and intra-aortic balloon pump therapy. Patients with advanced heart failure may be candidates for a ventricular assist device or heart transplantation. These treatments are highlighted in Table 4Go.


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Table 3 Treatment goals for patients admitted because of acute decompensated heart failurea

 

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Table 4 Interventions for acute decompensated heart failurea

 

CASE STUDY

AI was admitted to the coronary care unit because she had atrial fibrillation and ADHF. She was given oxygen via nasal cannula, intravenous diuretics, and intravenous β-adrenergic blockers and calcium channel antagonists to decrease her ventricular rate. As her ventricular rate became more controlled at 90 beats/min, her blood pressure was maintained at approximately 110/50 mm Hg. She had minimal diuresis with intravenous furosemide and remained dyspneic at rest, so a nitroglycerin infusion was started.

Her oxygen saturation remained less than 90%, and repeat chest radiography revealed a right lower lobe pneumonia. Her respiratory condition worsened, necessitating intubation and mechanical ventilation. AI was extubated after 2 days but required reintubation within 24 hours. She became hyperkalemic and required antitachycardia pacing for episodes of ventricular tachycardia; she also experienced 2 ICD shocks because of ventricular fibrillation. Although she was receiving amiodarone, she still had episodes of ventricular tachycardia. She communicated that she was becoming more fatigued and was fearful of additional ICD shocks and of being unable to breathe on her own.

 


   Changes in the Treatment Plan
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Difficult decisions must be made when patients do not respond to maximal medical and technological interventions. Questions that need to be asked include the following:

No single answer is appropriate for all patients. Further, changes in the treatment plan may differ on the basis of whether death is imminent or the patient has end-stage heart failure but can leave the hospital and be referred to home palliative or hospice care services. Often, no clearly recognized threshold exists between being very ill and actually dying.12

Plans should be developed for management of devices such as ventricular assist devices, pacemakers, and ICDs, if a plan has not previously been established via an advance directive. Although detailed review of these issues is beyond the scope of this article, if use of these devices is to be stopped, the discussion about this step with the patient and his or her family should include the patient’s prognosis, options other than device withdrawal, and what will happen if the device is withdrawn.13

A common issue for patients who may be discharged from the hospital is how to adjust oral cardiac medications to lessen the number of medications and their side effects while also providing palliation of symptoms and enhancing comfort. Holmes et al14 prepared a guide for evaluating the appropriateness of medications, taking into consideration remaining life expectancy, time until benefits are evident, goals of care, and treatment targets. When life expectancy is limited, goals of care are palliative, and treatment targets are focused on symptom management, drugs used should be ones that provide benefits in the shortest time. Suggestions include stopping warfarin if it is used for atrial fibrillation, because warfarin treatment for long-term stroke prevention entails frequent uncomfortable venipunctures. Statins are also used for long-term benefit and could be stopped. If symptomatic hypotension occurs, doses of vasodilators and/or β-adrenergic blockers could be decreased or stopped. If fatigue is overwhelming, and the heart rate does not increase too much with activity, use of β-blockers could be tapered off or stopped.


   End-of-Life Discussions
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Keeping communication open between each patient, the patient’s family, and the health care team is important.1520 End-of-life issues should be discussed with the patient (if cognitively unimpaired), key members of the patient’s family, and the patient’s primary health care providers (eg, attending physician, primary nurse, nurse practitioner).

It is important that members of the health care team present information together as a united group.21

Many patients with chronic heart failure have established relationships with their primary care physician, cardiologist, or nurse practitioner. Providers with such a relationship should be included in and may be the best persons to lead end-of-life discussions. Families of patients with life-threatening illnesses and injuries prefer having a consistent member of the health care team keep family members informed.18,20

Discussion should build on previous discussions with a patient and his or her family about the patient’s disease process. Clear, basic information should be provided about the patient’s current condition and anticipated prognosis; for example, "Mr O, your heart failure has worsened. The treatments are not working as effectively. We have some difficult decisions to make."

Goals of care should be discussed after the patient and the patient’s family have had time to absorb what was said, respond, and ask questions. As Norton and Bowers21 point out, the health care team often plants the seed, thus helping a patient and the patient’s family members understand the possibility that the patient might not survive. Supporting hope for recovery among patients and their families is important. However, if recovery is not possible, it is also important that the health care team redirect patients and patients’ family members to hope for relief of distressing symptoms and for comfort at the end of life.

Aggressive treatments may be continued for a period. For example, a member of the health care team might say, "Let’s continue all treatments for another 48 hours. Let’s talk again tomorrow morning and the following morning and evaluate the treatment plan." If treatments are futile, not beneficial, or disproportionately burdensome, they can be stopped.22

Early family meetings (held within 72 hours of a patient’s admission to critical care) increase the consensus of a patient’s family and health care provider related to goals of patient care and early palliative care.16 Hall et al23 found that early discussions of goals of care resulted in less cardiopulmonary resuscitation and decreased time from admission to the critical care unit to withdrawal of life-sustaining therapy for patients in whom death was determined to be inevitable.


   Treatment Decisions
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Patients with heart failure are admitted to the hospital in acute distress, and life-saving interventions may be rapidly initiated. If at any time, it is determined that a patient would not want treatments that have already started, the treatments can be stopped.

Decision Making by Patients
Patients who are capable of making decisions have the right to informed decision making. The voluntary choice of a competent and informed patient should determine whether or not life-sustaining therapy is initiated, continued, or withdrawn.24 Patients may change their minds about treatment preferences that previously had been articulated in an advance directive.


CASE STUDY

According to the EFFECT risk score (Table 1Go), AI had a poor prognosis: a 30-day score of 153 (mortality risk, 59%) and a 1-year score of 163 (mortality risk, 78.8%). This hospitalization was also her third one in a year for ADHF. The intensivist, critical care nurse, and social worker met with AI and her husband. The health care team reviewed her current situation, noting that her respiratory condition was not improving, her kidney function was worsening, and that the poor kidney function made it hard to keep her fluid status stable. They also noted that the ICD might continue to provide shocks. The team noted that mechanical ventilation could continue but that a tracheostomy would be recommended soon. They asked if AI and her husband wanted to consider deactivating the ICD and whether AI wanted to undergo cardiopulmonary resuscitation if it was needed.

AI said she did not know the ICD could be deactivated. In response, the health care team talked about deactivation and the real possibility of sudden death from a fatal arrhythmia as well as the possibility of repeated shocks if the ICD was not deactivated. AI said that she wanted the ICD deactivated; someone from the cardiology service came to the unit and reprogrammed the device so that it would not deliver shocks. AI and her husband wanted to try another 48 hours of mechanical ventilation to see if she improved. After 48 hours, AI’s respiratory status had not improved, and she reported that she was too tired to proceed with a tracheostomy; she wanted to withdraw therapies.

 

Decision Making by Patients’ Families
Advance directives help families of critically ill patients make end-of-life treatment decisions.19,2529 However, most patients admitted to critical care do not have advance directives; for example, less than 25% of people in the United States have executed an advance directive.3033

If a patient does not have an advance directive, decision makers in the patient’s family are encouraged to articulate what the patient would want. The family can be helped by shared decision making.34,35 Language that "implies shared decision making (eg, ‘In our best clinical judgment, your loved one has essentially no chance to regain the quality of life you say he would want’) in contrast to language that implies a completely neutral stance (eg, ‘It’s up to you to decide’)" is helpful to families.29(p439)


   End of Life
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
Preparing for a patient’s end of life is extremely important. Goals of care should focus on achieving the best possible death for the patient and compassionate care for both the patient and the patient’s family.21,36 Nursing interventions are summarized in Table 5Go.


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Table 5 Summary of nursing actions/interventions at the end of life

 
Patients often experience distressing symptoms at the end-of-life.3739 Critical care nurses have reported that dying patients often (31%) or sometimes (47%) received inadequate pain medication.37 Patients’ family members have reported that hospitalized patients experienced severe pain, dyspnea, and confusion during the last 3 days of the patients’ lives.38 In a study by Tolle et al,39 patients’ family members reported that more hospitalized patients (44%) experienced moderate to severe pain during the last week of life than did people dying at home (34%) or those dying in a nursing home (27%).

Location of Death
Every effort should be made to honor the requests of a patient and his or her family for the patient’s preferred location of death. Many patients and their families are fine with continuing care in the hospital setting. Other patients and their families prefer that the patient die at home. A social worker can usually assist in planning for a patient’s transfer home. The palliative care team can coordinate care at home or collaborate with a local hospice agency to facilitate a smooth transition to care in the home setting.

Patients at the End of Life
Patients’ requests should be honored. Patients may want specific members of their family (eg, children, pets, and extended family members) or special friends to say final goodbyes. The health care team should honor any particular end-of-life religious and cultural practices a patient may have. Patients should be assured that the primary goal during the dying process is comfort and that their privacy and dignity will be maintained. Nonessential monitors and equipment should be removed, and alarms should be turned off.


CASE STUDY

Before withdrawal of ventilatory support, AI was given morphine and diazepam to relieve congestion, provide analgesia, and decrease anxiety. Her cardiac monitor was turned off. Her husband remained at her side, assisting the nurse with AI’s care, until AI died approximately 24 hours later. At the nursing staff ’s suggestion, he participated in a bereavement support group a few months after AI’s death.

 

Infusions of analgesics and sedatives are commonly administered to prevent discomfort at the end of life. Analgesics have been used in 65% to 86% of patients having life-sustaining therapy withdrawn.4042 Morphine has been administered in rates starting at 2 mg/h.28,41,4349 Sedatives (diazepam, midazolam) have been administered at rates starting at 1 mg/h.41,43,45,47,48

Dyspnea and air hunger are the most frequent symptoms experienced by patients with heart failure at the end of life.50 Diuretics and morphine (intravenous or buccal) ease congestion, and anxiolytics may decrease anxiety related to the dyspnea. Even if patients are not hypoxic, a trial of oxygen therapy is warranted; oxygen may not improve physiological parameters, but it often decreases dyspnea.50 Placing patients in the position of most comfort for breathing and even using fans to circulate air are helpful. If patients have paroxysmal nocturnal dyspnea or orthopnea, 2.54 cm (1 in) of nitroglycerin paste topically at bedtime may provide relief. For loud, wet respirations, anticholinergics such as oral hyoscyamine or transdermal scopolamine can be used.

Patients’ Families at the End of Life
It is important that the health care team support a patient’s family throughout the dying process. As one critical care nurse described, "We’re with people in the most traumatic, beautiful, horrendous experiences in their lives, but you can make a difference in someone’s death."51(p61)

Patients’ families should be prepared for the dying process.52 They should be told that the process is unpredictable and that no way exists of knowing how long it may take. Families should also be prepared for what to expect (eg, decreasing consciousness, changes in breathing, changes in skin color, cooling of skin, and, possibly, reflexive movements). They may also be told that peripheral blood pressure becomes more difficult to measure by auscultation and peripheral pulses more difficult to detect by palpation because blood flow is shunted to essential organs.

A patient’s family members should be told that they have unlimited access to be with the patient. They also can help as they want with caring for the patient (eg, giving final baths, applying lotion). Creating a private, comfortable environment for the family is important.

In a study53 of the satisfaction of patients’ family members with care provided to dying patients in critical care, 91% of family members reported that their loved one was comfortable in the final hours of life, and the majority of the family members (88%) felt supported by the health care team. In a study of family members of patients who died in critical care, Levy et al54 found that pain was managed most or all of the time for 88% of the patients and that 79% of the patients died with dignity.


   Bereavement
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
How critical care nurses help families accept the death of a family member and deal with the initial stages of grief may influence the families’ subsequent experiences.55 Resources such as pastoral care and bereavement specialists should be used. A follow-up appointment with the provider who managed a patient’s heart failure may be helpful for closure. An opportunity for families to meet with a hospital physician, nurse, social worker, or clergy at a future time for a follow-up discussion may also be useful.56 In addition, patients’ family members have found it helpful to have hospital staff call them and send them cards after the death.57 Nurses, physicians, and other staff members who have taken care of patients who die while in the hospital may also benefit from follow-up group discussion and specialized staff bereavement services, if available.


   Conclusion
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 
More than 1 million patients are hospitalized yearly with ADHF and are at increased risk for death during the hospital stay. During hospitalization, patients may not respond to aggressive therapy and/or they may decide to withdraw or withhold therapies if the therapies become burdensome or the patients think the therapies are futile. Critical care nurses are key to helping patients and patients’ families recognize these issues, discuss treatment preferences, and manage signs and symptoms at the end of life. The ability of the health care team "to assess symptoms, administer medications, and provide other forms of support and comfort may be the single most important component of effective palliative care for a critically ill patient."58(pN7)


   PRIME POINTS
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 


   References
 Top
 Prognosis for Patients With...
 Clinical Findings in ADHF
 Treatment of ADHF
 Changes in the Treatment...
 End-of-Life Discussions
 Treatment Decisions
 End of Life
 Bereavement
 Conclusion
 PRIME POINTS
 References
 

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